Baby Pierce

10 month update

2012-02-15T17:19:00.000-05:00

It's hard to believe that our little guy hit the double digits on Sunday. He's now 10 months old (6 months adjusted). I haven't had a chance to weigh him in a few days, but at last weight check, he was 17lbs 9oz! Pierce has been adding new skills everyday. He's such a fun baby, and has such a wonderful personality. He's really enjoying signing and has become so much more interactive now that he can communicate with us. He does "more" and "eat" like a champ, and "milk," "water" and "all done" are done less frequently. It's so fun watching his vocabulary expand. Last week we skyped with our friends- Noah and Jenny (Noah's mom). Pierce loved seeing his buddy on the screen. Jenny and I are both dreaming of the day when Pierce and Noah can actually meet face to face! But it was still so good to have some adult interaction via Skype.

Pierce loves to look at his books! Check out how well he's sitting here.

We've heard from several therapist to expect his physical (gross motor skills) progress to be slow while his speech is rapidly expanding. They explained that since his brain is rewiring itself as it heals, it takes a lot of energy to accomplish basic tasks and learn new skills. Even though our language skills have been our biggest advancements, we are continuing to see improvement in the physical arena (even if it is painfully slow). Pierce isn't too far from "prop sitting." He can almost do it. If he would just bear a little more weight on his arms, we'd have it!

He's not a big fan of sitting in the bumbo. But with a little coaxing and a Baby Einstein movie, we're good to go!

He wasn't much help, but he looked so cute "helping" me with the laundry. Again, check out those sitting skills! (Also learned a lesson: laundry time should not directly follow a rather large bottle... otherwise, the laundry has to get rewashed)

Neuro update:
Yesterday was a rough day for us. I'll be honest, I debated even blogging about this. The emotions are just too raw, too personal and sharing them with the world can be scary. BUT we want your prayers. And we want to share as many details about this journey as possible in hopes of encouraging and helping parents in similar situations. We took Pierce for a NICU follow-up clinic yesterday. This was his first visit with a neurologist (up until this point we've only seen Pierce's neurosurgeon). Without going into too much detail (it kind of seems like a blur at this point), she zeroed in on all of the "red flags" and high risk factors that Pierce has working against him. She focused on his limitations, and really ignored his progress (I honestly think she thought I was lying about the signing! Should've brought the videos!) In more or less words, she told us she'd hold off on making a diagnosis at this point, but implied that a CP diagnosis was likely at our next visit.

You're probably wondering what this diagnosis would mean. And to be honest, I can't give a really good answer. CP is a broad-spectrum disorder that could mean anything from having slight weakness in one hand to severe debilitating loss of body control. I realize that many of you have questions about this, and I know I would before this happened. I'll try to simplify the situation. Basically, imagine a person having a stroke (this is the brain bleed we refer to in Pierce's situation). Then imagine the weakness/tightness of muscles they have on the side the stroke affected. Now I'm sure you've all heard of stroke patients having to do physical therapy to retrain their brain to help them use their weakened side. Well, in Pierce's case, the situation is pretty similar. A CP diagnosis really just refers to those same symptoms you'd see in a stroke patient. (I'm totally over simplifying this to help our readers understand. For those in the medical field or those who have children with CP, don't judge :)) In addition, a CP diagnosis doesn't really mean a hill of beans. At least not now, not to us. It does means that he has brain damage from the bleed that has led to tightness or weakened muscles, BUT there is so much hope. With physical therapy and lots of it, Pierce can (and I honestly believe will) be able to do everything imaginable. He will just have to work harder than most children. There is no way to predict what Pierce's road to recovery will look like. We hear stories all the time of children overcoming the odds. We hear of others with significant struggles. But the bottom line is: there is no way to predict what Pierce's future will look like. But if we are honest, do any of us know what our futures look like? I know where I am today is not what I imagined for myself when I found out I was pregnant 16 months ago.

Back to the appointment- Now we knew that Pierce has some weakness on his left side and some tightness in his legs (we have in home PT currently), but we were far from prepared for her doom and gloom speech (I mean, does anyone really benefit from talks like these?). To give her credit, she really was only repeating to us the basic "book" knowledge that she had been taught (and we've heard over and over again). BUT we've been so blessed to have so many optimistic drs surrounding us, it was odd to finally hear someone so negative. What I wanted to tell her was what I heard over and over again the NICU- "Pierce writes his own book." I know that every parent has the initial reaction of denial. You want to defend your child, tell the drs that they will beat the statistics. But, I also know that Pierce has beaten so many odds and I fully expect that he will continue to do so as he grows. So I guess what I'm trying to say is that I'm learning to just "listen" and take the negative opinions with a grain of salt.

Still it can be so heartbreaking to hear the statistics, to hear the odds and know that your child likely will be left with some lasting effects of their prematurity. We know this. We also know that God has worked many miracles in Pierce's life and trust that He will continue to do so. As I listened to her explain the risks, my mind wandered off... remembering the many times we've been told similar things. I've developed an amazing ability to tune out drs while pretending to listen. It's as if I'm hearing and retaining their words, but I do not allow myself to feel the implications of what they're saying. Immediately however, I was reminded of one thing- the only thing that can bring you peace in that situation: our hope does not lie in what Pierce's brain scans show. Nor does it come from what a doctors analytical predictions might be. Our hope comes from our God. And we have learned and trust that He is at work in Pierce's life.

There are days when I feel so broken, my heart so heavy. I've been through so many of those days this past year and yesterday was surely one, but I've come to realize to appreciate them. That may sound odd, but I really do appreciate them. They refocus my attention on the things that are eternal- on Christ and his work on the Cross and the hope that the Gospel gives to Pierce. This life is so temporary, so fleeting. It will end so quickly. And whatever trials Pierce endures in this world will quickly fade. That does not mean it eases the pain a mother feels as she thinks of her child struggling to accomplish basic milestones. But it does grant me peace. A peace that surpasses human understanding.

And so this morning, I did not wake in fear (although I'd be lying if I said the fear of the unknown future isn't something I battle almost hourly, especially after appts like we had yesterday). Instead, I woke knowing that I could trust my good and sovereign God with the future. How fitting is it that my devotion this morning said this:

"Come to Me with all your weaknesses: physical, emotional, and spiritual. Rest in the comfort of My Presence, remembering that nothing is impossible with Me. Pry your mind away from your problems so you can focus your attention on Me. Recall that I am able to do immeasurably more than all you ask or imagine. Instead of trying to direct Me to do this and that, seek to attune yourself to what I am already doing. When anxiety attempts to wedge its way into your thoughts, remind yourself that I am your Shepherd. The bottom line is that I am taking care of you; therefore, you needn't be afraid of anything. Rather than trying to maintain control over your life, abandon yourself to My will. Though this may feel frightening- even dangerous, the safest place to be is in My will." (taken from the Jesus Calling)

There's a song that's been one of my favorite for the past few weeks. Yesterday, I found myself gravitating towards the lyrics as I reminded myself of the truths found within. Ironically, I just heard on the radio that the singer, Aaron Shust and his wife just had their 3rd child who was born with Down's Syndrome.

How you can pray for us:
1. Pray that the tightness in Pierce's legs and weakness in his left arm would gradually decrease
2. Pray that Pierce rolls soon! and is able to meet other gross motor skills
3. Pray for continued protection against RSV and other illnesses
4. Most importantly, pray for us as we consider the best approach to therapy (there are so many paths we can take it can be mind boggling to navigate through all the options!) and pray that God provides the financial resources for the therapies that are not covered by insurance.

Thank you all for your continued prayers and support!

Christ is All,
Nik, Lindsay and Pierce Franks

A new "friend" for Pierce

2012-02-07T23:02:00.001-05:00

Pierce has a new favorite game- an iphone app that has a sassy parrot that basically mocks (repeats) whatever you're saying. To say he's enjoyed the conversation time with someone other than Momma is an understatement (thank goodness the end to RSV isolation is not far off!). Here's a video I snapped tonight of him talking to his new "friend." PS- Pierce's Project is really beginning to come together! We have so many things in the works and can't wait to share them with our followers. Look for an update on Friday!

Super Bowl

2012-02-05T18:29:00.001-05:00

Super Exciting News! A new milestone for Pierce

2012-02-02T20:55:00.000-05:00

Pierce has been doing so well lately. We've really enjoyed hanging around the house and playing. We spend most of our days working on physical exercises- currently we're trying to get our little guy the motivation to roll over (He's so close y'all! I just know it won't be long).

Nearly daily I find myself discovering something new Pierce is doing. This week, he found his toes, he rolled from his back to his side completely on his own, and is working on holding his own bottle during feedings. All of this has been so great. With each new milestone, a sigh of relief. You see, when a baby is born as early as Pierce, and they have such a bad brain bleed, there's a LOT that could go wrong. I know I've mentioned these things on the blog, and to be honest, they're not things I like to dwell on. They're frightening.

We have (and we know many of you have as well) been praying that God would heal Pierce's brain and that he would have no lasting effects from his bleed. We know that God is fully able. And we surely have seen God work miracles in Pierce's life.

I don't know what it is, but the trauma of everything we've been through seems to be resurfacing for the first time. All the suppressed emotions flooding in at the most random times. This week, I've spent a lot of time reflecting on the many times that Pierce almost died while in the NICU (nice, huh?!). I remember the times his sats dropped into the 20's and his heartrate spaced out on the monitor. With each event came an "insult" to the brain- a time where his brain wasn't receiving enough oxygen, which in turn causes a part of the brain to die. And with every insult the chances of Pierce emerging from this experience as "fully functional," decreased. The odds of a micropreemie are not easy to swallow. Many face lifelong disabilities and ALL of them have to struggle to accomplish seemingly normal tasks.

But our God is so, so good. While Pierce surely has many obstacles to overcome, he has beaten the odds in countless ways. This is not something we take lightly nor do we take for granted.

That is why I'm so, so excited to tell you that Pierce has now added to his skill set- the ability to sign and communicate with us! This is SO big! Really. Such a big deal that just about every time I think about it, I well up with emotions. He can sign "more," "eat" and "all done." (notice: all 3 are in direct relation to food... haha! He didn't get to be 17lbs 4oz by not liking food- yet another miracle!)

I knew I couldn't post this to the blog without actual proof that Pierce can now sign. So, here it is. Here is Pierce at dinner tonight signing "more." Enjoy! (Sorry the picture is kind of blurry!)

Thank you all for walking this journey with us. And thank you for your continued prayers for Pierce's development! It is our prayer that those who see this may know that our God is alive and working, not just in Pierce's life, but all around us.

Much love,
Lindsay

Our really BIG, really IMPORTANT announcement

2012-01-27T12:03:00.000-05:00

We are so, so excited to share with you all a special project that is in the works.
But before we do that, a little background on why we're doing what we're doing: As I've spent countless hours dreaming and planning what I'd like to do to celebrate Pierce's 1st birthday, I've come to the conclusion that it can't just be your ordinary baby's first birthday. I wanted a way to give back. To help others in situations similar to ours. A way in which we could return to the NICU to celebrate how far God has brought us. So out of that vision was born an idea...a project- Pierce's Project.

So without further ado, we are happy to launch our new website

Will you please join us in helping to support other micropreemie families? And more importantly, would you consider praying not just for us, but for the many lives who are effected by extreme prematurity every day?

Much love,
The Franks Family

PS- our mobile site is not quite up and running, so be sure to check out the website on your computer!

Neotech

2012-01-24T21:08:00.001-05:00

Attn: all parents of kids using equipment, this post is for you!

If you're like me, you've had more than one occasion where your home supply company has given you a pretty decent headache while you're attempting to order the correct supplies for your child. Fortunately, I stumbled upon this amazing company that will go above and beyond in ensuring that parents get the right supplies for their children.

Background story: I heard about Neotech from the Graham's Foundation website. After seeing their products, I wrote Neotech and asked for a few samples. I also asked them if I could potentially buy some in the event that I liked them. They immediately responded and graciously sent me more than enough samples to last for a while (and let's just say they were much more generous than the supply company). They were so gracious and stated that they'd be more than willing to send extras if needed. The best of all, they didn't even charge for them!

In conversing with Neotech, they've made it clear that they love to help families in need and would enjoy working directly with the families to allow you to use their products. For preemies on o2- they make the best cannula holders. We've been using them instead of the Tender Grips and like them so much better. They're gentle on the skin and much easier to remove than the Tender Grips. We're also using their pulse oximeter wrap, which is a better alternative to what we'd been using (harsh medical tape).

All this to say, parents of preemies (or those who use home equipment for their kiddos), you must check this company out! If you're interested in ordering samples from them, you can email Judy at judy@neotechproducts.com. And please pass the word along to your friends, your home equipment and your NICU's (they make great products for the teeny tinies in the NICU).

One last word about Neotech, I have been so impressed with their generosity and the way in which they strive, not to run a business, but to truly help families and preemies. I know that their main concern is to create products that are safe/gentle for our babies.

That being said, I'd like you to know that they've already committed to helping us in our latest cause. What is that you might ask? Well, we are SO excited to share with our followers something we've been working on to give back. BUT it's not quite ready yet, so you'll just have to wait.

Check back on Friday as we will be unveiling our special project at noon (ET for all of our non-local friends)!

9 month update (pt.2)

2012-01-20T18:13:00.001-05:00

Today Pierce went for his 9 month pediatrician check-up. Here are the results.

Age: 9 months (5 months corrected)
Weight: around 17 lbs *Our home health nurse has weighed him at 17 lbs even on her scale, we get 17ish on our scale, and his weight was the same at the pulmonologist, but today their scale read "16 lbs 10oz." Nevertheless, we're sticking with the 17lb mark (Note: when given the option a parent of a micropreemie will always record the higher weight- he's earned those rolls!) We're obviously not concerned about his weight, which is such a miracle! :)
Height: 25 1/2 inches

Update: *please excuse the bragging :) Our pediatrician didn't have a whole lot to say today other than the fact that he looks amazing, especially for all he's been through. She was so impressed with how "advanced" Pierce's speech is (he loves babbling). In fact, she thinks he's pretty close to being caught up in that area to that of a "healthy" 9 month old! Another thing that amazed her was that Pierce is already on the growth chart for his weight (3rd percentile)- something we thought was not likely for at least a year or so. The other thing that was so, so encouraging was that she assured me that it is not uncommon to see 5 month olds not quite rolling yet. Our dr looks to see if the babies are either rolling or sitting assisted around 5 months to gauge development and since Pierce does so well sitting assisted, she said she didn't think he was behind at all for his adjusted age. This was so, so encouraging to hear as I often think I can get bogged down with therapist and specialist reiterating that he's "not a normal baby." (Often times they do this to reassure me that he will catch up, but I have to admit, it really just frustrates me!)

We feel so, so blessed to have had such a wonderful pediatrician visit today and consider it nothing short of a miracle. We know that your prayers have helped us get to this point and we ask that you continue praying for us. Please pray specifically for Pierce's development- that he will begin rolling and sitting unassisted soon! Pray also that the weakness in his left arm will resolve itself and not get worse. And finally, continue praying for protection against winter germs.

Thank you for walking this journey with us!

Lindsay

9 month update

2012-01-14T11:29:00.002-05:00

Thursday marked Pierce's 9th month. What a journey we've been on since April! We are so thankful for all that God has done in Pierce's life and look forward to watching our little guy grow. As I reflected on the past nine months, I couldn't help but be so overwhelmed with such a sense of pride in Pierce. I know that as parents, especially those who have seen our children deal with severe difficulties, it is not hard to find a reason to be proud in them. But Thursday... Thursday was different. I was really, REALLY proud of my boy. I just wanted to squeeze him all day and let him know how proud he makes me. He's such a fighter- enduring far more than I've ever had to do. And with each challenge, procedure or difficulty that comes, he takes it in stride, showing the world how tough he really is.

Stats:
Age: 9 months (5 months adjusted)
Weight: 17lbs even
Height: will have to wait on 9-month check up for that one

This past month, Pierce has really started to let his personality shine. He laughs, coos and babbles all day long and really is such an easy-going baby most of the time. He added to his skills the ability to get himself on his side (from his back), sit assisted pretty well and he has even gone a few (quick) seconds of sitting unassisted. He's spent a lot of time strengthening his shoulders/arms and looks as if he's really close to rolling from tummy to back as well.

Physical therapy is going well- we've only had 2 sessions in the past month (Pierce receives PT 2x/month). As of now, Pierce shows little signs of his prematurity. He does tend to favor his right hand over his left so we will be keeping a close watch on that and making sure we offer him lots of opportunities to use that left arm (this could be a result of his grade 4 brain bleed on the right side of his brain). Right now, we're working on helping him gain more strength in his arms (to help with rolling over) and giving him more opportunities to practice sitting. He's such a trooper and does so well with this (although he does have a tendency to freak when we "make" him do something he doesn't want to, but what baby doesn't?!).

Showing off his tummy time skills. He really showed off for his neurosurgeon on Thursday and almost rolled off the table!

Pierce continues to eat and grow well. He's added lots of solids this past month (bananas, blueberries, green beans and peas to name a few) and has loved just about everything we put into his mouth (such a huge blessing for a micropreemie who is at high risk for an oral aversion). We have really enjoyed watching him explore different tastes and even some thicker textures. On top of solids, he generally takes three 8 oz bottles a day.

Here's a funny video I captured at dinner time the other night. As you can see, he gets kind of emotional when I tell him it's over and we have to clean his face.

We are also beginning to teethe. Drool, drool and more drool. It's everywhere! His first tooth still hasn't broken through, but it has to be close, right?

Oxygen weaning is going well. Pierce is down to .25L at naps/nights (when he sleeps). Most of the time I also put his o2 on for bottles since he takes 8 oz at time (big bottles) and a little boost seems to help him tremendously. But overall he's really done SO well coming off the oxygen and it's so nice to have the freedom to carry him around the house without a cord attached! He is currently getting .25mg Pulmicort 1x/day. Originally the dr placed him on .5mg 2x/day, but that turned my sweet little baby into a monster (not eating, sleeping, miserable) or as my friend Gina put it, "he had 'roid rage'." So, our home health nurse suggested we lower his dosage and that seems to have done the trick. Speaking of our home health nurse, it has been SO nice to have her come out each month to weigh Pierce and give him his Synagsis shot (the one that helps prevent severe RSV). It's nice not to have to drag him to the germ-infested pediatrician office every month :)

On Thursday, we went to see Pierce's neurosurgeon. He was so impressed with how well Pierce looks and thinks the shunt is working well. We didn't have a scan this time (nice to have a break!), but are on the books for a MRI in April to check on the shunt.

Other than that, nothing new. He continues to sleep well through the night (yeah!) and is down to taking 2 naps a day. Isolation has not been quite as bad as I imagined, probably due to Skype and the incredibly mild temperatures we've had lately.

Last weekend it was nearly 70 degrees, so we took advantage of the nice weather and headed for a walk around the neighborhood

We also had a very special visitor yesterday- Pierce's primary nurse, Lindsay. We love Lindsay and it was so good to catch up. Pierce LOVES him some Lindsay :)

How you can pray for us:
1. Pray that Pierce will start to use his left arm more and that physical therapy and play time will pay off. Pray also for wisdom as we consider taking Pierce back to Asheville for more ABM therapy.

2. Please pray that God continues to heal Pierce's brain and that he will suffer no lasting effects from his brain bleed.

3. Pray for continued health and protection throughout the winter (RSV season).

4. Pray that Pierce will gain the strength to become mobile soon.

Thank you for walking this journey with us!

With love,
Lindsay

Reminders of the Past

2012-01-05T10:50:00.002-05:00

“There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.” -Harry Crews

We all have them. Some big. Some small. Some inside. Some outside. Scars are an interesting thing- reminders of where we've been, what we've been through and how far we've come. Those we wear on the outside nakedly display to the world our past. But they also offer opportunities for conversation- an opportunity to share our own experiences with others. So why my fascination with scars today?

Every time I bathe my sweet baby boy, I can't help but look at his scars (and they are many) and remember snapshots from the days he earned them- the highs and lows of our NICU journey are represented on Pierce's body. I consider these scars symbols, which help me to remember the important things in life and a constant reminder of how fragile our lives are. His scars give us an incredible opportunity to proclaim the goodness of our Lord to any who inquire. I've watched time and time again at how God has used these very scars to bring nurses, drs, and other listeners to tears.

In a way, I'm almost glad he has them. Not only do they make him unique, they are also simple reminders of how far God has carried him (and us) throughout these past 8 months. They offer perspective. But more importantly, they offer hope. Hope for Pierce's life (in reflecting on how far God has brought him) and hope for others who are faced with similar situations ("With God all things are possible.")

And while I'm sure he'll gain more scars as he grows (he is a boy after all!), I thought it'd be neat to share with our readers (especially those who will remember praying for him while he was earning these scars) some of the marks God left behind to remind us of Pierce's journey:

Because Pierce's skin was so fragile (almost jello-like in the beginning), the leads that they placed on him to monitor his vitals did significant damage to his skin. Many people assume he had a skin graph, but this is just how it healed.

Above Pierce's belly button, off to the left, you can see his scar from the VP shunt.

Under his left armpit is the scar from his PDA ligation surgery.

Another scar that resulted from underdeveloped skin.

He has a couple on his head from the VP shunt and the VAD, but because we have had significant hair growth (yeah!), I couldn't get a clear picture.

It is my prayer that as Pierce grows he will wear these scars proudly and use them as an opportunity to tell all who ask about our God's faithfulness.

Much love,
Lindsay

I think I can...

2012-01-01T21:50:00.001-05:00

We spend a good portion of our days doing something similar to this scene:

"Hmm... look, there's my toy"

"I'll try to get it"

"This is hard work! Baby P90x is tough."

"Maybe if I just pout and make the most pitiful face ever, Mommy will help me get my toy?"

"That didn't work. She's not coming. I really want that toy. Maybe I'll try again."

(scoots over) "Almost." (scoot) "Got." (scoot and reach) "It."

(Mommy scoots toy further away to encourage him to roll) "Wait. You mean I have to roll?" (lifts legs and attempts to roll)

"Mommy, please help me get my toy"

"I just want to play, but rolling is too hard. I give up." (at which point Mommy can no longer stand to see him make that face and caves, giving him the darn toy)

Pierce is SO close to rolling from his back to his tummy. I just know that one of these days I'm going to walk in and find him on his tummy (at least that's what I've been praying for!). We've seen tremendous improvement in his development. He's able to get himself on either side and with a little push, can go all the way over. I'd probably make him practice more, but seriously....who can resist that pitiful face? Will you join us in praying that he can accomplish this big milestone soon?

Christmas

2011-12-30T16:51:00.000-05:00

Happy New Year from the Franks Family!

Pierce's first Christmas was a WONDERFUL one- filled with lots of family (either here or via skype) and lots of rest (what every baby needs, right?!). Oh, and don't forget the presents! Here are a few shots from our Christmas:

A Christmas Post

2011-12-21T15:07:00.002-05:00

On the day that Pierce was most critical, the day we were called in to hold him because death was imminent, things were a blur. Life was happening around us, but it was as if we were frozen in place, my eyes locked on my baby. I couldn't bear to think past the minute I was in, letting my mind wander was far too dangerous and too painful to bear. I don't remember much from that awful day, but I do remember one thing- our sweet nurse Rachel, made it her goal to cater to our every need. I remember her bringing us food and drinks, going out to update our families in the waiting room, and doing literally everything we needed done as we were unable to leave Pierce's bedside. For about 24 hours, we sat in that NICU, waiting for the end to come, every heartbeat on the monitor was seen as a gift, another minute with our son. At some point I remember Rachel and I talking. She had such a sweet and caring spirit and was exactly what I needed that day. I still remember Rachel saying one thing that offered me so much hope and comfort. She said something to the effect of, "I think Pierce is going to pull through. And I can picture you guys sending out a cute family Christmas card at the end of the year." I remember how FAR away that moment seemed and how overwhelming the present circumstances were. But for some odd reason, I remember being filled with hope as I thought about how my heart longed to see the day where I could send out a Christmas cards as a family of three and not two. Right then and there, I prayed and asked God to grant me the opportunity to send out Christmas cards as a family of three.

This week, I finally got my Christmas cards in the mail! And while I was addressing them, I couldn't help but be filled with gratitude to our Heavenly Father for granting us this opportunity. We are SO thrilled to have our little 8-month old, 16 lb (yes, that's right... 16!) Pierce with us this Christmas. And we look forward to celebrating the miracle of not only his life, but of the life of our Savior, Jesus Christ. We hope each and every one of you have a very, Merry Christmas!

Merry Christmas from the Franks Family!

2011-12-12T20:44:00.000-05:00

Where has the time gone? It seems like just yesterday we were leaving the NICU with our 4 month old. Now, he's hit 8 months! He's weighing in around 15 1/2lbs (which while big only means that he now has to get 2 synagsis injections instead of one) and is able to come off o2 for a good portion of the day. Still eating well. Still sleeping well. Praise be to God!

Not much to update on tonight, but know that Pierce is doing well. We're learning to enjoy our time at home. I always tend to take these milestones as time to celebrate and reflect on how far God has brought us. Honestly, not one hour passed today where I didn't at some point stop and thank God for rescuing Pierce from what was deemed as "certain death." I remember the bittersweet moment when I first held him, and how I knew that the only reason I was holding my little, 1 lb 5oz baby was because all signs indicated that death was close. I remember how I prayed, begged and asked God to grant us more days with our son. And now, here we are...8 months later. How truly blessed we are to have him here with us!

Last week, Pierce had his first couple of virtual playdates. It was so fun! One of them was with Noah, another micropreemie in the Charlotte area. Like Pierce, Noah could also use your continued prayers...you can read his story here. Although Pierce loves seeing his friends on the computer screen (really, he told me he does!), these virtual playdates have been SO good for me. It's so nice to have contact with the outside world. (Remember, we'd love to chat with our followers anytime!)

Here are a few pictures I snapped in honor of his 8 month "birthday."

And now, a ridiculously long video of our guy playing with Nik in his crib. This is for all the grandparents, aunts, uncles, cousins and whoever else feels the desire to watch a baby play and babble and laugh :)

ABM Therapy

2011-12-07T10:37:00.001-05:00

What does it take to entertain a baby in the car for over 8 hrs and have a fun time while doing it? Lots of bottles, a car seat mobile, pacifiers, a boon dispensing spoon along with plum baby food, lots and lots of wipes for the mess that ensues with the aforementioned products, and a sense of humor. Oh yes, throw in a really, really good, super easy baby (yes, our baby is the best and I'm bragging on him!).

Yesterday we loaded up at 630am and headed to Black Mountain, NC to meet with a new therapist. While we didn't plan to spend the ENTIRE day in the car (it only takes 2 hrs to get to Black Mtn from CLT), we didn't take into account the chance of rain, and lots of it. We had planned to take Pierce on a walk through the town that Nik and I first met and to ride through Asheville before heading back. But alas the rain caused us to abandon the idea of getting out, stretching our legs and enjoying the beautiful mountain scenery. We did however manage to drive through the college campus, see several of our friends from Montreat and head over to a friends house in Asheville. Oh AND we got to eat the best BBQ ever. I say all this to say that it was a great trip and it was so nice to be back in one of our favorite areas.

Ok, now on to what everyone is waiting for: our review of ABM therapy. I must admit, going in to this I was kind of skeptical. Not many have heard of ABM therapy and while those who have claim amazing results, I wasn't so sure that they weren't just desperate parents who were getting scammed by con-artists posing as therapist. I had heard some amazing results- from babies who weren't rolling over before that immediately started doing it after the session to children who are wheel-chair bound learning to walk, but I couldn't help but wonder, if this is such a great form of therapy, why isn't everyone doing it?

Nevertheless, we decided to give it a try, to take the trip to meet John and to put our assumptions aside until after we met with him. Our first impression with John was that he was warm and caring. He carefully listened as I outlined Pierce's rather lengthy medical history as well as what the previous physical therapy assessment had said. We laid Pierce on a table, in a comfy room with low-lighting and watched as John carefully and gently moved his hands along his body, intently studying Pierce's body. He examined many things- how Pierce's lower back moves, the symmetry in his limbs, and the ability for his feet to push when placed against a firm surface- all of this was done while Pierce was lying on his back. The entire time, Pierce was just as happy as he's always been and definitely at ease. If John did something that he did not like, he simply stopped and moved on. Gentle...that's the best word to describe this approach.

But if you're like me, you're probably thinking, ok if it's SO gentle, could it possibly be doing something? And therein lies the key to ABM- one of the key essentials to this therapy is to make changes SLOWLY so that the child's brain has time to process and absorb what they're learning about their body.

Here are a few things that really stand out about our first session: we were intrigued when after a few minutes of being with John, Pierce started moving his left leg more than he was at the beginning of the session, amazed when he had him almost rolling over in a matter of minutes but SHOCKED this morning when I got him up and noticed that his right eye is no longer turning in as much as it has been (something that the eye dr said would likely require glasses to fix). It's strange because I was so skeptical, but there's really no denying the change in Pierce. His eyes are now moving together instead of separately. They were not doing that yesterday morning.

Our therapy session was nothing short of amazing, but perhaps John's evaluation was even better. He told us that he was quite amazed with how well Pierce is doing considering his history. He noticed no stiffness or weakness in either side of his body and no significant problems. In fact, he really couldn't find any reason for us to continue ABM therapy at this point. What he recommended was us keeping a close eye on Pierce's development. He threw in that we should not become so obsessed with him following the "normal" pattern of development (rolling at 4 months, sitting by 6 months, walking by 1 year, etc), but rather we should watch Pierce's trajectory of development. He said that as long as we see an upward trend, Pierce does not need to see him.

I really can't say enough about John as a therapist. In a way, I'm almost sad that we won't be adding him to our regular routine as of now. But I AM so thrilled to hear that Pierce is doing so well and to know that we now have a great go-to resource if we ever grow concerned with Pierce's development. I appreciate his honesty and character- he could've easily taken advantage of two parents eager to do anything or buy anything to help their child thrive, but he didn't. Instead, he offered his vast experience and knowledge and let us know that if we ever had any questions or concern, that we could always call or email.

At this point, I'm fairly torn. I know that we will proceed with meeting with our new physical therapist and likely start the 2x/month. However, I really REALLY enjoyed the individualized approach with ABM and will find it very hard to continue in PT if I find that Pierce gets labeled and thrown in a box. One thing I know for sure is that if Pierce develops anything that is concerning to us or his dr, the first place we are headed is back to do ABM with John.

Thank you all for your prayers. Know that Pierce's development is really nothing short of a miracle from God and a result of your many prayers. I ask you to please continue praying that his little brain will fully heal and recover.

And for you preemie mommas in NC, if you'd like information on John and the ABM method, you can go to his website here for more information. We would highly recommend him!

Much love,Lindsay

Day 119

2011-12-05T09:28:00.001-05:00

Today marks the 119th day that Pierce has been home. What does that mean? It means that he has now officially been home longer than his stay in the NICU! Yesterday, also marked Pierce's 4 month adjusted mark.

Pierce's personality is really starting to shine through. Everyday Nik and I find ourselves cracking up at the little things he's beginning to do. One of our favorite games is to see if we can get P to mimic us. We stick our tongue out, he'll stick his out. We smile, he'll smile. We coo, he coos. But our favorite one of all is the newest trick up Pierce's sleeve. I don't even know what you'd call this, but the face he makes while trying to do it is HILARIOUS. For weeks I've tried to successfully capture it on camera. And I finally caught it. About 2 weeks ago we started Pierce on rice cereal. I really had my suspicions. But wouldn't you know, our little chunker took right to it! He immediately mastered the whole "move the food with your tongue to swallow" technique. Since then, we've moved on to apples, pears and carrots. I was initially worried that introducing solids this early would slow down his bottle feeding (something we definitely don't want) or cause him to be constipated (a common preemie issue), but neither of those are an issue for him so we will keep forging ahead. If anything, it has increased his appetite. Pierce is now taking 6-8 oz at a feeding. I remember the days of 6-8mLs! Almost every day I find myself thanking God for granting us easy success in the feeding department, something that I don't take for granted at all.

These videos were taken on Thanksgiving Day. He thinks he's so funny, singing along to the Macy's Day Parade. (Yes, I do believe that's Christina Aguilera on the TV in the first video.) Please pray for us this week as we head to Asheville to meet with Pierce's new therapist. Also be praying as we continue weaning Pierce off o2. He's able to come off for a good portion of the day, but was having some significant wheezing when feeding, so we put him back on at .1 during the day. Pray that he'll be able to come off for good soon. Thanks for walking this journey with us.

Love,Lindsay

Therapy, here we come!

2011-12-01T21:04:00.001-05:00

Here's the latest:
Age: 7.5 months (3.5 months adjusted)
Weight: 15 lbs 1.5 oz

Last week, Pierce was assessed by a physical therapist for the first time since leaving the NICU. Having been a professional nanny before having P, I totally went in this with the understanding that he more than likely would choose that one morning to be "off" and not himself. And wouldn't you know, I was right! It really wasn't that bad, but it wasn't great either. He was so sleepy when the therapist arrived that he decided that making eye contact and holding his head up were just "optional" and that he'd rather not participate. Instead, he bobbed his head along, while closing his eyes and dozing off. I probably would have been much more frustrated had I not have had such low expectations going into this. I know from experience, kids NEVER do what you want when you want them.

I say all that to say that the therapist wasn't really given a good picture of how P acts 90% of the time. Fortunately she was able to observe him after a cat nap and noted that he did much, much better in the areas of eye contact/tracking and head control. But unfortunately, she had already done the test and given me the results. They weren't horrible by any means. In fact, I was pleased he did so well considering he was falling asleep for most of the exam. She rated his head control at a 2 month level (although came back at the end and said he was right on track with his adjusted age- 3.5 months) and said everything else looked great. She mentioned that she noticed a little bit of stiffness on his left side, which would make sense because his bleed was worse on the right. In addition, I mentioned to her that Nik and I have noticed Pierce has started preferring his right hand over his left, which would further the notion that he probably does have some tightness on that side of his body. Other than that, she said he looked great. And at 15 lbs, he's a whopper of a micropreemie. So needless to say, she was very pleased with how well he eats.

She did recommend that we start physical therapy as soon as possible because of the tightness she saw as well as the mere fact that he was so early, had a severe brain bleed and therefore is at risk for many things. We are totally on board for that because we feel the earlier we start the better.

However, I couldn't help notice how Pierce seemingly got peg-holed, labeled and thrown into "the system." For some reason, I really wasn't at peace with the decision to have traditional PT 2x/month. I know it may sound strange, but I really just feel like right now (and this may definitely change), this isn't the right approach for P. So I started exploring, talking to our early interventionist, to other parents and stumbled upon the Anat Baniel Method. For those who don't have time to research it, it's basically an learning-based approach that combines gentle chiropractic techniques and movement to help retrain the injured brain to rewire itself naturally. That's an oversimplified definition to say the least, but it at least gives you some idea of what we're considering.

So after a lot of research and prayer, we've decided to take Pierce to Black Mountain, NC to meet with the ABM Specialist. I'm really so excited. Partially because Black Mountain/Asheville is where we moved from, and it will be so fun to get out of the house for a day or so, travel up there and visit one of the most beautiful cities I know. I'm also SO, so excited because I've heard from several preemie parents that this therapy is really beneficial. Anyways, it's a start.

As of now, we will likely go the ABM route as our primary means of therapy (this may all change after we go next week, who knows?!), and keep the traditional PT to once a month (I'd like to still keep that door open so that we can easily transition if we feel it's best). Next week, we will be taking Pierce for an initial consult, get him assessed by the therapist and go from there. If the therapist thinks we should embark on therapy, we will likely be headed back there for a week long intensive session in a month or so. (The way the therapy works best is to do two 45 minute sessions a day for 5-6 days straight.) But all of this is still dependent on what issues, if any, the therapist sees when he examines P.

How you can pray:
1.For clarity and guidance as we meet with the therapist next week. Also, for wisdom to be imparted on him as he assesses P and we make a game plan.
2. Please pray for Pierce. Every night we pray for his entire body, from his head to his toes, but you can specifically be praying for healing in his brain, his eyes, and his lungs.
3. Pray for us as we try to create a feasible budget to live off of as we look at paying the out-of-pocket costs for the ABM therapy, not an easy task to do when you are living on a fixed income and have a full-time grad student. But we want to say that we are SO, so thankful to the many who so graciously donated money, both through the initial fundraiser and through the golf tournament. Please know that the Lord has used you to alleviate our burden.
4. Pray for Nik as he is busy finishing up his second to last semester at RTS.

Thanks for sharing in this journey with us!

Lindsay

2011-11-27T11:09:00.001-05:00

A year ago I sent this picture to Nik while on the phone with him. We would have never guessed the wild ride that would follow, nor anticipate that we would be sitting here a year later with a 7 month old! God is good.

2011-11-27T10:05:00.001-05:00

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4:16-18

Will he be able to walk? Will he be able to talk? Will he be able to learn? Hear? See? And run? These questions run through my mind as if I pressed the repeat button on a cd player. Literally, every day, not long goes before one of these questions enters my mind. Then, what usually follows is a series of intense emotions- fear, pain, grief, sadness, anger. I find myself growing bitter towards those who have healthy children. They never have to worry about those things. They go about their day, posting casual photos on facebook... "Oh, Johnny found his toes." Great. "Johnny is rolling over." Great. "Johnny is walking." Great. Great. Great. It's SO embarrassing. Really, I shouldn't be this way. But I am. (Sigh) And I really regret having to confess this.

But what God has been doing in my heart is to incredible not to share so I bare my soul. I'm sure many of you have been or are in the same position as me. I know so many of you reading this have children who have had less than perfect starts. Their lives have been filled with struggles and while little Johnny was finding his toes, our children were struggling to stay alive. You know what it's like to wrestle with these intense emotions. And maybe you're like me, finding yourself confused as to how to process these emotions in light of your faith.

People, usually those who have no clue what it's like to watch your child suffer, say things like, "Look how far he's come," and "He's going to be fine." And yet, those questions continue to repeatedly play. Over and over again. Again and again. Never-ending.

I know we are so blessed- Pierce eats great and as of now, has fairly minor issues. We know how blessed we are that he has overcome great odds to make it home to us. But we are also so very aware that we are still in the beginning stretch of a marathon. We have come so far, yet have so far to go. So many of the above questions will not be answered for several years. Some days it feels like we are in an airplane, circling the ground, unsure of where where we will land. Will it be hot? Cold? Bumpy? Smooth?

I guess what I'm trying to say is that the fear of the unknown can be very overwhelming.But God is teaching me not to fear. To not fear the unknown demonstrates your trust in Him, in His goodness. I am also seeing the fact that I so often get stuck in the mindset that this world is it, so I better make it the best it can be. But that's not so. This world is not final. And because of Christ, this world is the worst that I will experience. So to fear something that is so temporary, so fleeting, reveals the disbelief in my heart.

As I've wrestled through this, I've found my questions have started to subside. They're not gone, and I don't anticipate they will ever be. But they're not as terrifying. They're less intrusive. And instead of the questions, I'm remembering that God is good, He does good and He works things for good. So whatever struggles He allows us to endure, I am trusting that He will grant us the grace to make it through. And while I definitely think that the character of God demonstrates that it is ok to want the best for your child, I also find that it shows that God loves Pierce more than I could possible imagine and He wants what is best. But perhaps my definition of "what's best" has been wrong, not in line with what Scripture teaches. If Pierce can run, jump, laugh, and play but doesn't know Christ, what good is that? (Matthew 16:26) So tonight as I tuck Pierce in, my prayer will continue to be the same that Nik and I have prayed since he was born- that God would heal his entire body- his brain, his lungs, his heart, his eyes, his bones- but more importantly, that Pierce would never know a day apart from Christ. That is my prayer now and always.

Thank you for walking this journey with us.

Lindsay

Baby shower

2011-11-21T10:37:00.001-05:00

First, let me start by saying that this post is way overdue! Back in April, about a week before Pierce was born, I went to the beach with some of my closest girl friends. I remember talking about my ever-changing body, and anticipating Pierce's arrival in August. The girls offered to throw me a shower. We joked and laughed and had SUCH an amazing time on our girls weekend. Little did I know that in more than a week, my baby would be born far too soon and life would change forever.

I feel so fortunate to have had such wonderful friends at my side through such a dark time. They were there for me, to support me, cry with me and share in the joys of Pierce's journey. I am forever indebted to each and every one of them. So, being the amazing friends that they are, they (along with 2 other close friends) threw the most incredible, most amazing baby shower EVER. Seriously, it was outstanding! It just so turned out that the shower landed on August 7th, the day before we celebrated Pierce's homecoming!

The theme was "Super Pierce," to go along with the vintage comic book nursery (pictures coming soon!) that we designed for Pierce. (For those of you who are reading this and thinking that vintage comic books is kind of random, let me explain: Nik owns an online business selling vintage comic books. In our tiny townhome, the boys share a room. Nik's office is on one half and Pierce's crib/stuff is on the other half.) So without further ado, here are some picture from the shower.

Special thanks to Erin, Brandy, Ashlyn, Becky, Sarah, and Christy for doing something so special for us!

7 Months Old

2011-11-20T19:21:00.000-05:00

Last Saturday we celebrated (well you could say we forgot, but are NOW celebrating) Pierce's 7 month birthday!!

Pierce is holding the "famous" pen pictured in the picture below. My how he has grown these past 7 months.

Age: 7 months actual (3 months adjusted)
Weight: 14lbs 8 oz
Length: 22 1/2 inches

Pierce has been doing so great. He really has! He is babbling non-stop now. He is close to rolling from his back to his tummy. He's doing that whole "grab your feet and sway" move (will try to catch this on camera later), but hasn't quite figured out that if he just goes a little farther, he will roll. He will get there. Soon.

As a parent of a micro preemie, I find myself torn. Some days I wish so desperately to see him achieve another milestone. To see progress, check another thing off "the list" and know that he is doing well. Other days, I find myself wanting to slow down time and savor every second of his "baby" stage. I know it will be gone far too soon.

We took Pierce for his first CT scan last week. The results weren't as great as we had hoped, but they weren't bad either. It appears Pierce's ventricles are still enlarged, but the general consensus is that they have gone down some. So for now, we are going to continue to wait and see what happens. The neurosurgeon can adjust the rate at which his shunt flows, but for now, he wants to wait and see how fast they're draining on their own (basically give Pierce more time to correct the issue without changing the shunt settings). It appears the shunt is working, just not as fast as we had expected. The CT scan was very interesting. They didn't need to sedate Pierce, and it was pretty quick. And they even asked Mommy to ride with Pierce. Interesting, huh?!

Pierce and Momma riding through the CT scan.

Pierce also saw his pulmonologist last week who gave us the "ok" to take Pierce off oxygen during his awake times. We will be keeping a close eye on his breathing patterns (how hard he is working to breathe), feeding patterns and oxygen saturations to monitor how well he is doing off. Oxygen weaning is not something that you can/want to do quickly, but at least this is one step closer to having him off for good! It has been so nice to have a little bit of freedom from all of the tubes and wires we generally lug around.

At the pulmonologist

Pierce will have his first Physical Therapy evaluation on Tuesday. This will give us a good "baseline" to work off of as Pierce enters therapy. As of now, the reports we have been given from those involved in his care (pediatrician, early interventionist, neurosurgeon) are that Pierce is right on track with his adjusted age (3 months) so it will be interesting to hear how the Physical Therapist rates him. Many of you may be wondering why, if Pierce is showing now signs of delay, are we starting physical therapy? That's because Pierce is at such a high risk for a whole slew of different things given the fact that he was born so early and that he had a grade 4 brain bleed. The thinking is that early intervention is necessary and extremely helpful in helping these little ones to overcome their brain injuries. You have probably heard that the brain has an amazing ability to rewire itself overcome damaged parts (Did any of see Gabby Giffords tv interview last week? This was a great example of that!). Well, in little ones, their brains are not even fully developed. So, the goal of physical therapy will be to work on helping Pierce to overcome any deficit caused by his brain bleed. And while he may not be symptomatic now, many of the effects may not be seen until he's a little older. So for now, we will continue to work, work, work at meeting those developmental milestones.

Please continue to pray for continued health through the RSV season. Also pray that Pierce's ventricles will begin to significantly decrease in size and that no damage would be caused to his brain while we are in the "wait and see" stage.

Thank you for sharing in our journey!

Pierce LOVES reading books!

Love,
Nik, Lindsay and Pierce

As seen on TV

2011-11-18T17:31:00.002-05:00

For those who were not able to watch this live, here is the segment that WCNC 36 did on Pierce. We are so thankful to Michelle Boudin for sharing our story. She did a wonderful job.

Enjoy!

a must read!

2011-11-14T15:17:00.001-05:00

When Pierce was about a week old, I finally found the courage and some time to do a simple google search. I was looking for some hope. I wanted tangible evidence that a 23-weeker could survive and have a somewhat "normal" life. I know this may seem shallow, but honestly, the stories I had heard were so grim. I remember one person telling me how they heard of a 23-weeker who survived. When I asked how she was doing some 4 years later, they simply said, "Oh, she is great. She is deaf, blind, doesn't walk, has a trach and doesn't eat by mouth." Gulp. Now I KNOW that children with special needs can be SUCH a blessing. And I know that our Pierce is surely at risk for many disabilities. And we will love him and accept what comes by God's grace. But I needed something more. I needed to see a miracle. I needed to know that Pierce could possibly overcome his horrible brain injury and extreme prematurity. Doing a google search turned up little to no results. Plain and simple, 23-weekers just aren't out there. There are so few who survive and of those, very few have blogs (at least that I could find!). And then I saw Jack. Honestly, the first time I saw his picture I wept. I cried because it was a picture of him with his mother. A beautiful portrait of a child who looked so healthy. So normal.

I immediately began tearing through their blog posts, wanting to know every detail of this amazing little miracle. I related so well to their early struggles. In fact, Pierce had so much in common with Jack- a grade 4 brain bleed, a shunt, a PDA ligation, ROP, Chronic Lung Disease. I knew, I just knew, that God had sent us Jon, Jessi and Jack to offer us the hope that I so needed and desired.

And so, I'm so excited to announce that now they are going to be able to provide hope to SO many more people. You see, Jon wrote a book! In his book, You Don't Know Jack, Jon chronicles Jack's birth, NICU days and life since he left the hospital. It is an amazing tale of survival, faith and determination. I especially appreciate the fact that this book is written from Jon's point-of-view. I've often wondered what Nik felt like as he watched me, and Pierce in the early days. Both of us so helpless. And yet he was unable to do much for either of us. This book offers great insight into a father's perspective. And I think you all will appreciate Jon's sense of humor, as well as his innate ability to recount the tumultuous journey that comes with parenting a 23-weeker.

Please read the excerpt, enjoy and share with others! I know that this book is going to be an amazing resource for those walking through situations similar to ours.

You Don't Know Jack!
Love,
Lindsay

2011-11-07T15:50:00.001-05:00

Today ended a 6-day mandatory exile of Daddy. Nik came down with a cold last Wednesday and at the first sign of sickness, was sent packing and headed for the door. Fortunately, Nik's parents live down the road so he was able to spend time with them. Unfortunately, Mommy was left with solo baby duty and NO adult interaction. Really, the solo baby duty was easy. It was the lack of adult interaction that weighed on me. How is a person supposed to go for days without seeing a human face?! Whew, I'm glad that is behind us. As of now it doesn't seem that Pierce picked up any unwanted germs. Will you please pray for his continued health?

He was able to get his first Synagsis shot, which helps to prevent severe cases of RSV. We were so fortunate that we were able to get Pierce's pediatrician on board to let us have it administered at home by a home health nurse. It is SO nice to not have to drag him into the germ-infested pediatrician office! He will be getting a shot every month for the next several months (through April).

In other news, Pierce has been making GREAT progress. We've done several trial runs with him off oxygen in preparation for his pulmonologist appointment (this Wednesday). I was SO chicken to take him off. In the past, he's immediately dropped his oxygen saturations. So you can imagine my surprise when one day last week, he went a whopping hour satting at 100 without his cannula in! The past 4 days, I've taken him off for most of his awake time (including feedings) and he's continued to do so well and hold his sats at 98-100. Go Pierce! I again marvel at the strength of our little guy.

Another update- Pierce went last Wednesday for another routine ROP eye exam. I was THRILLED to learn that Pierce's eye's are recovering well. He does have a slight astigmatism as well as a tiny bit of farsightedness. But as of now, no other eye issues. His ophthalmologist did a full eye exam and was able to determine that he has good eye function. A very good thing considering his ROP was so severe! The ROP is completely gone and she's predicting that, while he made need glasses in the future, he should have pretty decent vision! Praise God. But the big news was that we were finally able to say goodbye to the dreaded speculum. For those of you who are preemie parents, you know exactly what I'm talking about and why this is such good news. For those of you who don't, just know that it's this awful looking metal contraption that they use to get a good look at the back of the eye. It is SO gross and looks so uncomfortable. I am SO HAPPY that we never have to see that thing again!

Ok, picture time!
Here are a few of the latest:

Someone's cordless! (at least for a little bit) And it is SO wonderful.

People often ask me if Pierce is content. This is the way he is 95% of the time. The remaining 5% is typically between the hours of 6-8pm. Is ANY kid happy during that time?!

Ok, the story behind this video. We have this book, one of those picture/sound animal books. It has a puppy, which Pierce loves. A kitten, Pierce also smiles at that sound. And a guinea pig, which is another favorite. And then, on the last page there is the parrot. Oh, the dreaded parrot. We get to that page and this happens. I don't know what it is. Perhaps it's the big scary feathers and the creepy big eyes?

How you can pray:
-Pierce has his first CT scan this week. It will be the first look we will get at the damage the brain bleed caused. While we know that this does NOT indicate how well Pierce will do in the future, it may give us a better idea of areas in which he may struggle or need a bit more therapy. The main reason he's having this done though, is to check the placement of the VP shunt and to see how well the ventricles are draining. Please be praying that this will yield good results and that the shunt is functioning properly.

-Our story will air on WCNC News Channel 36 on Friday, November 18th. We will keep you posted on the exact time as we know more. But please be praying that this interview will be used by God to demonstrate His glory and to bring hope and encouragement to others who are walking through similar situations.

-Pierce will have his first physical therapy assessment in a couple of weeks. This will be used as a baseline as we continue to closely monitor him for any signs of delay. As of now, the early interventionist and pediatrician see no signs of any delay in his development, but nevertheless, it will be something we have to watch for the next few years given his brain injury and extreme prematurity.

-Pray for Nik as he prepares to end his second to last semester of Seminary! We are SO ready for May (graduation) to come.

Thank you for sharing in our journey.

Love,
The Franks Family

Happy Halloween!

2011-10-31T22:01:00.000-04:00

Pierce's first Halloween was a fun one! Well, looking back, it wasn't really any different than any other day. Since we are quarantined for RSV season, we couldn't go trick-or-treating. I'm a little bummed because I was looking forward to him earning us some candy. Oh well, maybe next year!

But, we did manage to put on his costume and take photos Obviously this was purely for the photo opportunity so if anyone wants an unused costume for next year, message me! :)

Anyways, without further ado, I give you Pierce, the mighty firefighter!

What does it take to be a good firefighter? A helmet, a fire suit, an oxygen tank and a firetruck are just some of the essentials!

Who knew that "Pierce" was a company that makes firetrucks?!

Mommy with her handsome firefighter!

Happy Halloween from the Franks Family!

PS- Tomorrow say a prayer for us as we will be meeting with a reporter from a local news station to share our story.

2011-10-27T10:15:00.000-04:00

I really, really need to get back to blogging. I'm not quite sure where my days have gone. They seem to fly by. A typical day for us goes something like this: wake up around 730, feed Pierce, tummy time, put Pierce down for a nap and try to get some housework done, wake Pierce up, feed Pierce...repeat until bed time at which point I'm usually so exhausted, I can't seem to find the time to update the blog. I'm really hoping that I'll be able to get more efficient as Pierce gets older. But for all of our eager readers, please know that I am truly sorry!

Things have been going SO well. Really, we can't complain. Pierce has recovered so well from his shunt surgery, and as of now things seem to be working well. He will go back in about 3 weeks for a follow-up to check on the shunt and see if it's draining properly. At that time, Pierce will also get his first CT scan (until now, he's only had head ultrasounds). This will be our first real look at what kind of damage the brain bleed left behind. On one hand, it's kind of scary to know what the bleed destroyed. And yet, on the other, we've heard SO many positive stories- people telling us that their children never missed a beat developmentally despite negative CT results. To be honest, we really aren't that concerned, because Pierce is doing so well. We know that he may have some hurdles to overcome as a result of the bleed, or a result of his extreme prematurity, but God has granted us such a peace that He is in control. We know that what He's doing in Pierce's life will not be limited to the results of a scan.

Also, we will go in the next few weeks to see Pierce's pulmonologist. I'm really hoping we will be able to wean Pierce off the o2 really soon. He's done so well at home, so it will be nice to see the oxygen go. Of course, we will have to wean slowly. Right now, Pierce is on .25L (what he came home on). My guess is that we will drop him to .1 before taking him off during the day. (Remember, we take micropreemie steps in every area!)

Ok, now the things that you are all waiting for- Pierce's stats and updated pictures!

Pierce is 2.5 months corrected and is currently weighing in at a whopping 13lbs 14 oz. He's continuing to gain, on average, about an ounce a day. We are very pleased with his growth and have been amazed at how well he eats. He is eating around 5-6 oz at a feed now. To say that he enjoys eating is really an understatement. But by no means is this something that we take for granted. We are very aware that many micropreemies struggle with feeding. For now we are just so thankful that this is not a battle we face as of now.

One of Pierce's favorite things to do is to ride in his mamaroo. Definitely one of the best purchases we've made!

We opted for the peapod over a pack-n-play, and it definitely another favorite. It's so easy to fold down and move around. Pierce LOVES it. But sometimes, I find that he likes to escape. Good thing there's always the option of zipping him up! :)

Rockin' the "chick mag" graphic t for the ladies

How you can pray for us:
1. Pray for continued healing from his brain bleed. Pierce is currently involved with an Early Interventionist, and will likely be enrolled in several therapies (speech, occupational, physical) in the coming months.Pray for Pierce's development- something that we will be watching closely over the next couple of years.
2. Pray for the shunt to do it's job with no infection or malfunction
3. Pray for continued stability with his eyes. As of now, the ROP has resolved and there appear to be no complications with the surgery.
4. Pray for us as we will be meeting with and sharing our story with a local reporter who is doing a story on the NICU. Pray that our story will help encourage others and bring glory to God as a result.
5. Pray for continued protection against the winter illnesses and for endurance as we remain mostly in isolation for a good portion of the winter.

Thank you for your continued support and prayers!

Much love,
Nik, Lindsay and Pierce

Happy 6 Month Birthday Pierce!

2011-10-13T11:22:00.000-04:00

Yesterday marked Pierce's 6 month birthday. It's so hard to believe that it's been 6 whole months, half a year since Pierce was born!

We took Pierce for his 6 mo check up yesterday and here are his latest measurements:

He weighed 12lbs 13.5 oz and was 22 1/4 inches long. He's still in the <3% for his actual age (of course!), but we have a special growth chart that compares him to other preterm boys and he's well over the 95 percentile on that chart! So needless to say, he's growing very well for a micropreemie!

Our pediatrician was so pleased with Pierce's progress. It really is nothing short of a miracle. Pierce was showing off all of his skills for her- looking side to side, babbling and smiling, and even sitting up (assisted of course). She said that in some areas he's already caught up with babies that are his real age (other 6 month olds). In fact, she told us that some of what he's doing, her own daughter wasn't even doing at his age. Incredible. Of course, we, like all new parents think our child is just so smart and so advanced (haha!). Another positive was that she sees no signs of any weakness in either side of his body- something that we will be watching for as he grows. With Pierce's brain bleed, there's significant risk for Cerebral Palsy, but the good news is that as of now (and it's still kind of early), Pierce is showing now signs of that. Please continue to pray that he will grow and develop normally and that he will have no lasting side effects from the brain bleed.

We really could not be any happier to have our little guy home with us. Not a day goes by that I do not find myself thinking about all that he has been through and how far God has brought him. I know that God has answered many of our prayers throughout this time, and I don't know if I've ever been more grateful in my life. Thank you for continuing to walk this journey with us and continuing to pray for Pierce.

A huge "thanks" to all who participated in the Friends of Timothy Golf Tournament on Monday. We are so thankful for Good Shepherd Presbyterian Church and the love that they have shown our family during this time. Nik was able to attend, and Pierce and I were able to say "thanks" via webcam (although we definitely wish we could've been there in person!). It was a wonderful event and we are so, so grateful for everyone's support.

We shared this video with the folks at the tournament and wanted to pass it along. It's a look back at the past 6 months. Enjoy!

Much love,
The Franks

a note about RSV season and visitors

2011-10-06T19:56:00.000-04:00

October 1st marked official "quarantine" for Pierce Franks as well as MANY other micropreemies around the country. For those of you who don't know what RSV is- it's basically a cold virus that can cause pneumonia or even death in babies with Chronic Lung Disease. So to say it's important to shield these micropreemies from germs is a major understatement. Since Pierce was released from the hospital, our drs gave us the orders to have no visitors except immediate family. So, October 1st didn't really change much for us. It just meant that I am EAGERLY anticipating the end of cold/flu season in April so that we can bust out of this joint and show Pierce off to the world. I wonder what he'll think when he's allowed out of his bubble? Will he be scared? Will he be excited? It will be fun to watch indeed.

I've battled various feelings (anger, frustration, fear, grief) for awhile now. Before Pierce was born early, I was planning on taking him to work with me (I was a nanny for 2 adorable girls and the plan was for him to tag along to all our activities). I never in a million years, thought that I'd be sitting with a medically fragile child in my house for 8 months straight! Seriously. No visitors? No trips out? We were warned, told stories and know that RSV could easily kill Pierce. Now does this mean I sit around in fear all day? By no means. It just means we have to play it safe (really, really safe) for awhile until Pierce's lungs have time to heal and recover. So for now, we are forced to get creative with germ-free ways to stay in touch with all those we love. I ask that you be patient with us and understand that we are only doing what's best for P.

Anyways, my dear friend and fellow micropreemie momma, Jessi, wrote this blog about surviving the long and depressing period of isolation. I thought you all might enjoy reading as Jessi is a terrific writer and so eloquently dictates the basics of RSV isolation. Hopefully it will shed some light into our lives as we struggle to raise these little miracles.

With Love,
Lindsay

2011-10-06T19:40:00.000-04:00

Ignore the baby drool on my shirt, please ;)

I try to get Pierce to do tummy time and he just wails for about 5 minutes, then falls fast asleep. I don't think he likes the exercise.

Things have been well at home. Pierce has done so well following his shunt surgery and so far, no complications. We take him back to the neurosurgeon tomorrow morning for a follow-up brain scan and appt to check on the size of his ventricles.

Pierce also had his routine eye exam yesterday. It went really well and P's eye dr felt it was time to "graduate" to monthly eye exams! Whew. I'll be so glad when they stop altogether. It's really a pretty traumatic experience for ALL of us. But nonetheless, I'm thankful that his eyes are healing so well after surgery.

Pierce now weighs 12 lbs 10 oz (as of 10/3)! A good portion of the day I find myself just staring at him in amazement. Looking at his huge (ok, our perspective is a little skewed) hands and feet, admiring how intricately they were knit together by God. And to think, we've watched a large portion of his "fetal" development from outside the womb. What a crazy insight into how wonderful our Creator is.

In other news, last night Pierce spent his first night in his room! I decided to start sleep-training little man (aka putting him on a schedule) and it has worked beautifully! He now naps 3-4x/day and drum roll please...SLEEPS through the night. Hallelujah! In some ways though, it's bittersweet because it's an ever-present reminder that he's growing up way too fast. But I will admit, the extra sleep at night has been nice!

I've got many more pictures and stories to post, but for now, this will have to do.
Thanks for sharing in our journey.

Love,
The Franks

2011-10-01T11:06:00.000-04:00

We are now 5 days post-op and Pierce is doing great. His resilience continues to amaze us. Really, I mean, the morning after having BRAIN surgery, he was up doing this.

What a tough guy.

Thank you all for your prayers and support. Pierce's surgery went smoothly and they were able to extubate him almost immediately afterwards. He did have a few apneic spells (complete with turning blue and desating) shortly afterwards, so they sent him to the Pediatric ICU. However, general consensus was that these spells were merely related to the anesthesia and sure enough, as soon as he had his room in the PICU, the spells stopped. Because Pierce did so well throughout the night, they discharged him the next afternoon. That was great, though a little nerve-wracking for us as we felt the pressure to monitor him closely on our own. But God was gracious, and Pierce has done so well at home! Already, I find myself forgetting that he now has a new piece of hardware in his little body. We will go back this coming Friday for a follow-up ultrasound and appt to check and see if the shunt is doing its job. Please continue to pray for no infection or malfunction. The first 3-6 months after placement has the highest risk for both. So please pray that this is our last trip to the PICU.

Thank you all for your continued prayers.

Love,
The Franks

PS-Don't forget to come out to the Golf Tournament/BBQ if you can make it. We'd love to see you all there! If you do plan to attend, can you please shoot an email to Jim Hinton at jhinton@gmail.com so he can have a head count for the lunch? Thanks and hope to see you all there!

VP Shunt Surgery

2011-09-26T20:53:00.000-04:00

Pierce is resting well and recovering from his surgery. Things went very well. The good news is that Pierce was able to come off the vent shortly after surgery (before we were even able to see him). He did (for the first few hours after surgery) have a significant amount of bradys/desats (heart rate and o2 saturation drops), which caused him to turn blue. That's never fun to witness. BUT, general consensus says it was due to the anesthesia and pain meds that they pumped in to him. Just to be safe, Pierce is spending the night in the Pediatric ICU. Depending on how well he does tonight, he may be able to go home tomorrow.

On a fun note, we've had a bit of a mini-NICU reunion, with lots of old friends. P was able to see some of his favorite nurses, nurse practioners and doctors- all of whom came to visit him as soon as they heard he was here. We feel so blessed to call this amazing team "friends" and are forever grateful for how well they cared for Pierce while he was in the NICU.

Please continue to pray that P will be comfortable and rest easy. His blood pressure has been elevated all day and they're thinking that may be due to pain. Pray that this subsides and that everything will be on "go" tomorrow as we hope to get discharged. Also pray for continued healing and protection against any infection.

Thank you all for your continued support. It means so much.

Love,
The Franks

Surgery update

2011-09-25T10:55:00.000-04:00

For those of you who missed our tweet on Friday, Pierce's shunt surgery was moved to tomorrow morning at 8 am. I really appreciate the fact that Pierce's neurosurgery team really wants him in/out of the hospital before RSV (cold/flu) season gets under way (October-April). I must admit, I'm glad we are rushing this... gives me less time to sit and think about it!

Please be in prayer for us as Pierce goes in for his 4th surgery. I'm so dreading the moment when they come and wheel him away. Hate it! Pray for a speedy recovery and that Pierce would thrive with the shunt. Speaking of thriving, yesterday Pierce rolled over from his tummy to back for the first time! Looking back, it was so comical. We were sitting in the living room, watching the Carolina game and Pierce was playing on his tummy. All of the sudden I look down to see him, mid-roll and flop, down he went. I don't know what his reaction to rolling was, but after I immediately started screaming for Nik to come see, crocodile tears welled in his eyes. I think he scared himself, or I scared him, or perhaps both? Nonetheless, this was a HUGE accomplishment. Something to check off the list. I know it may not seem like that big of a deal to most, but with a micropreemie every little milestone is one worth rejoicing over!

Ok, back to the shunt-one of the main goals for Pierce's shunt will be to keep it from overdraining. Apparently, because he is draining most of his fluid on his own, they'll have to be careful to not let the shunt do more work than it has to. The neat thing is that the shunt is adjusted externally after placement. It's very high-tech and I'd probably make a fool of myself trying to explain, so for now, just know that it uses magnets and the neurosurgeon is able to adjust the rate at which it's draining.

After surgery, they'll be carefully monitoring the shunt for any signs of infection or malfunction (both of which could require immediate surgery). Please pray that things will go well and that our little boy will bounce back from this just like he always has. Also pray for continued protection as we take P to the germ-infested hospital. Just a quick trip there on Friday (for his post-op), warranted a massive OCD-attack from Mommy. :/ I have a feeling hand sanitizer and lysol spray will be our friend for the next few days.

We will update mainly thru twitter while in the hospital so be sure to check the side bar of the page for updates!

Love,
The Franks Family

PS- The picture posted above adequately sums up my emotions as we go for surgery tomorrow. For weeks now, I've been trying to catch this cute sad face that Pierce often shoots while waiting to be fed. Isn't it just the most adorable face ever?!

2011-09-23T09:45:00.000-04:00

Pierce is doing great at home. Eating great. Sleeping great. Playing. Did I mention sleeping great?! Last night was the 3rd night in a row that Pierce went 9+ hrs without waking up. Because Pierce has grown so well, our pediatrician gave us the go ahead to let him sleep as long as he likes at night! Pierce must enjoy sleep as much as me, because he pretty much decided he would put himself on this schedule. Oh the joys of having a NICU baby who is used to self-soothing and sleeping through any amount of noise. (One major benefit of our 4-month hospital stay.)

Pierce is now weighing in at a solid 12 lbs 1.5 oz and at his last check up, he was 21 3/4 inches (ok, we stil have A LOT of catching up to go in the length department. thanks steroids!).

We don't take this progress for granted though. We have earnestly prayed for this growth, all the while knowing that many micropreemies have a really hard time in this department. We know that this is all God's doing, and every day we are amazed at how far He has brought our little guy.

Shunt surgery is still set for October 3rd at 8 am. Please keep Pierce and us in your prayers.

Also, little reminder: golf tournament is on Columbus Day (Oct. 10th). We'd love to see as many of you there as possible.

Ok, now to the stuff you've all been wanting- the pictures!

It's really hard to find time to take pictures these days, but I did snap a few to document how big P is now. Enjoy!

P's favorite thing to do- sleep in the bed. I joke that he likes our memory foam mattress topper, which I'm sure, is much more comfortable that his firm baby mattress. And yes, I'm aware that he can't sleep here all the time...we watched the Safe Sleep dvd in the NICU :)

After a bath, we let Pierce go cannula-free for a few minutes and were able to snap a couple pics of his pudgy little face.

Thank you for the love and support.

Much love,
The Franks Family

surgery update

2011-09-15T20:36:00.000-04:00

Sadly, yesterday's appointment did not bring the results we had hoped and prayed for. It looks as if, over the course of the past month, P's ventricles have continued to grow in size. At this point, neither the neurosurgeon or us see any need in waiting to place a permanent shunt (the longer the ventricles stay enlarged, the more chance they could do permanent damage to the brain by placing pressure on it). Pierce's surgery is on the books for October 3rd at 8 am, but could get bumped up sooner if an opening becomes available. He will go into the Pediatric ICU this time around, and if all goes well, will likely be in for 2-3 days. The biggest risk of this surgery (aside from the risks that come along with any surgery) is Pierce's lungs. He will have to go back on the ventilator for surgery and will be on until he is fully-awake. Of course, we are so thankful that Pierce is SO big and much more ready to endure this surgery. We are thankful that we've been able to postpone this surgery this far (something that's pretty much unheard of). And we are praying that P will bounce right back from this.

I will admit, it's been hard to wrap my mind around this surgery. It's been the one thing that we've prayed we wouldn't have to endure. I don't know why. Probably because it seems...well, so permanent. And it's one more thing to add to the list of concerns (we will constantly have to be on the look out for infection, malfunction, etc.) It also means that Pierce will need more surgeries in the future. (The shunt has a life-span of 8-10, but a good number of them need to be replaced before then due to malfunction.)

For months now, we have prayed and asked God to give us wisdom regarding a vp shunt and we think he's answering that prayer with a "go ahead" to get this done. So we will humbly submit and be grateful that God has placed a very talented neurosurgeon in our life to help our little boy. We know God is sovereign. We know He is good. We know that He wants the best for our son. But we also know that everything he does, is to bring glory to himself. And so we are trusting in that tonight. Trusting him with our son. Trusting him in our pain. Trusting that He will use our suffering to bring good.

Thank you for your continued prayers.

Much love,
Lindsay, Nik and Pierce

5 month birthday

2011-09-12T22:25:00.000-04:00

Happy 5 Month Birthday Pierce!

Pierce now weighs 11lbs 3oz! It's hard to believe that 5 months ago, he only weighed a pound and a half. Needless to say, we are SO thankful for Pierce's remarkable growth and we pray that he continues to thrive and grow stronger. Every day I think he looks more and more like his daddy. Check out the resemblance for yourself:

Pierce is doing so well at home. Last week, we had our first visit to P's pulmonologist. Unfortunately, and to no surprise to us, he confirmed what we knew- Pierce won't be coming off o2 for awhile. At least not for another 2 months (our next appt). But, the pulmonologist was so impressed with how BIG and strong our son is. He also said that Pierce is quite the exception because in all of his years of practicing medicine, he's yet to see a VAD (temporary shunt). He explained that it's unheard of for a kid to have a VAD placed and then not need a permanent shunt. And since the pulmonologist doesn't see the baby until their released from the NICU, the babies have already gotten their permanent shunt before they come to him. This just confirmed one of the many miracles that we are witnessing in P's life.

Pierce also had his repeat hearing test. And...HE PASSED! Not only did he pass, but he passed with flying colors. I know it may not seem like a big deal, but deafness was high up on the list of "probable" conditions that Pierce would have. Drs. told us that he could be deaf, blind, disable... (the list goes on and on). BUT, scratch deaf and blind off the list, because he has good eyes (thanks to laser surgery and Dr. Gillig) and good ears.

Tomorrow, Pierce goes for his routine eye exam and then to the pediatrician for a weight check. And then, on Wednesday we're back for a cranial ultrasound and a trip to the neurosurgeon to check on P's ventricles. Please, please continue to pray that the ventricles are decreasing in size and that P will not require a permanent shunt.

In other news, my mom (Nana) hurt her back and has been unable to travel to Charlotte to visit P (she lives 1hr 1/2 away). SO, I got brave on Friday and made the trek with Pierce...alone. I have to say, I'm pretty proud of myself. Nik had to work, so I loaded P up (monitors and all) and headed south. Pierce did so well traveling down to Greenville. He only fussed a tiny bit and I never had to pull over. Here are a couple of pics from the day:

It was so great to take Pierce on a little excursion. I don't know what it was, maybe the fact that the hospital was miles away, but it made the trauma of the past 5 months disappear and become a faint memory. It's nice when present moments of joy replace the terrifying memories of the past- what a remarkable time to reflect on what God has done in our lives.

Thank you for continuing to follow our journey and pray with us.

Love,
Nik, Lindsay and Pierce Franks

Golf Tournament

2011-09-06T22:03:00.003-04:00

As I mentioned before, some dear friends at Good Shepherd Presbyterian Church have graciously chosen us to be the recipients of the 6th annual Friends of Timothy Golf Tournament. We are really excited about this and want to make it a celebration of Pierce's miraculous life. The golf tournament is in 4-person Captain's Choice format. The tournament is set for 24 teams but can be pushed to 28 if necessary. We last heard that twelve teams have already said they want in. So, if you are in the area or want to travel to Charlotte and be a part of the tournament, please see the info below.

But even if you're not a golfer, there are activities for you! There is going to be a BBQ lunch catered by Smokey J's BBQ and a silent auction. Again, we want this to be a celebration Pierce's life. We would love to see all our friends, family and have the opportunity to meet all of our supporters.

Here are some quick details, but click here for the official flyer (click on the pictures and then once loaded, click again on the picture to zoom in)

October 10, 2011
6th Annual Friends of Timothy Golf Tournament
**Events include a silent auction, BBQ lunch and a four-person captains choice

How you can get involved:
1. Register for and attend the BBQ lunch. (The event will be catered by Smokey J's BBQ of Mooresville.)
2. Donate to the silent auction.
3. Attend and buy something at the silent auction.
4. Sponsor, or ask your local businesses to sponsor teams/holes.
5. Register yourself or a team (4 people) to play in the golf tournament.

Ok, so you're not convinced you want to come yet? Well consider this: while we can't make any promises, there's a good chance that bubble boy, I mean Pierce, may make a brief appearance to thank everyone. Of course we will have to get creative since lil' man cannot be around large crowds due to his nonexistent immune system. BUT, nonetheless, we will try to figure out something.

More than raising money, we really want this event to be fun for everyone as we celebrate what God has done in Pierce's life. Will you please consider joining in?

To register a team, sponsor a team/hole, donate to the silent auction, register for the lunch or for more info, contact Jim Hinton (Tournament Chairman) at jhinton@gmail.com or call 704.650.0333

We hope to see you all there!

Love,
Nik, Lindsay and Pierce Franks

2011-09-05T22:40:00.000-04:00

All has been well at the Franks' household. Pierce is eating well and growing like a weed. Yesterday marked his 1 month corrected birthday (1 month from my due date). And tonight, he weighed in at 10lbs 10.5oz! It's so hard to believe that I've now put away most of his newborn clothes and he's fitting comfortably in his 0-3 month clothes.

This week will start a long list of drs appts that we have scheduled (2 this week, 3 next). First on the list is our hearing test. Tomorrow morning, Pierce will be retested to check for hearing loss. (Pierce didn't pass his first screening that was done last month before he left the NICU.) Please pray that he will pass and that no further testing will be needed.

On Wednesday, we go to his first pulmonologist appointment. The pulmonologist will help us in determining when/how quickly we will wean Pierce's home oxygen. He is currently on the same setting that he came home on (.25 liters).

Next week, Pierce will see his pediatrician, the eye dr, and the neurosurgeon. Of course the most important of these will be our meeting with the neurosurgeon to look at P's brain scan (scheduled for the morning of our appt). We continue to pray that Pierce's ventricles have begun to decrease in size and that Pierce will not require a permanent shunt.

We'd sure appreciate your prayers for good results from our appointments.

Christ is all,
Lindsay, Nik and Pierce

day 142...

2011-09-01T22:25:00.000-04:00

Wake up. Change diaper. Calm screaming baby. Make bottle. Feed hungry baby. Burp baby. Change baby's clothes. Unplug monitors and spend the next 20 minutes trying to untangled the wires. Plug monitors back in. Get out and connect missle...no wait, that's just the portable oxygen tank. Turn it on. Try to coordinate carrying baby downstairs plus 2 monitors and 1 oxygen tank. Put baby in carseat. Carefully carry the baby plus carseat, 2 monitors and oxygen tank out to the car. Don't forget the keys. Oh yes, and the diaper bag. Wait, I need a blanket to cover his carseat to keep out the germs. Put baby in car. Untangle lead wires again. Place monitors in the front seat so I can see them while driving. All set?

I thought you might get a kick out of hearing what our routine consists of these days. I might add that I now have absolutely NO sympathy whatsoever for those who complain about getting a healthy newborn (with no equipment) out of the house. When I was a nanny, I used to think getting two kids (1 baby + 1 toddler)was difficult. Now, I think I could load the whole Duggar family in the car in less time that it takes to load P in. Sheesh.

I don't want to come off as complaining. I'm really not. This is just my lame attempt to explain why I've gone over a week without updating you all.

So here goes...
P is 142 days old now. That's 20 weeks, 2 days to be exact. (I was informed of this at the eye dr today)
He weighs 10 lbs 4.5 oz! (I really think he missed the memo that micropreemies are supposed to be small for their age)

So far, he is doing fantastic. He is on a really nice routine, and for the past 5 days, he has gone 6 hours at night without waking. Pretty incredible if I do say so myself. The zantac is working wonders with his reflux. In fact, he really doesn't have it much anymore. At least not for right now. Pierce's eye's are healing wonderfully since surgery and the doctor moved us to every other week for appointments (we were going weekly). We go next week to have his hearing retested and also to see the pulmonologist to discuss weaning Pierce off oxygen. Then, the following week, we go for another brain scan and to see the neurosurgeon. We will also have another eye exam that week.

How you can pray:
-Pray that Pierce's ventricles are decreasing in size and that Pierce will not require a shunt.
-Pray that Pierce would pass his follow-up hearing test and that no further testing would be needed.
-Pray that Pierce's reflux will continue to be managed by the Zantac
-Pray that he would continue to grow and thrive and for continued protection against infection.

Pierce had a visit from Papa

Waving "Hi" to all his followers

Mad because Mom is taking pictures and not feeding me

______________________________________________

Thank you all for your prayers and support. I promise to try and be better about posting updates! Also, stay tuned for more details about the upcoming Golf Tournament. Tomorrow we will be posting the flier along with all the details for those who are interested. Thanks!

2011-08-24T22:35:00.000-04:00

Life at home is SO much better than life at the hospital. SO, so much better. Really, did I mention it's better?

Since we brought Pierce home, we've pretty much had the same daily routine. Per doctors orders, we only leave the home for doctors appointments. This week, we've only had one. Last week, two. Which means we've already logged A LOT of hours inside our teeny, tiny townhouse. Oh, it's going to be a long winter (sigh). But I don't want to complain. This is the time we've waited and prayed for. Every time I start to feel frustrated, I take one look at P and am reminded of the miracle that he is. I also am deeply aware that he won't stay this little for long. And so I'm hanging on to every moment, trying to soak up all that I can while in this season.

Not much has changed since I last posted, but here's the quick recap: We met with P's neurosurgeon last week. He said that the ventricles, though still very much enlarged, have not changed in size (classified as stable) and that we could either choose to place a shunt, or wait. We chose to wait. He said that there was still a chance P could avoid a permanent shunt (yay!). He also said that we are (and will likely be for awhile) in a "wait and see" mode. What this means is that over the next few months, the neurosurgeon will be monitoring P's ventricles by monthly ultrasounds. Our prayer is that they would begin to decrease in size (if they do not decrease, we will be forced to place a shunt) and not grow any bigger. Please join us in praying this. With every head ultrasound (and we've had oh so many), I feel God working out the impatience in my heart. How I wish I had a magic 8 ball that would let me peer in and see whether or not P was going to need this surgery. But the truth is, I don't. In fact, I don't know anything about any aspect of Pierce's (or my own) future. And so I'm learning. Learning to trust in God, every step of the way, and to be content in waiting on His timing.

We have also seen Pierce's ophthalmologist twice since I last updated. His eyes are healing from the laser surgery and Dr.Gillig was very impressed with how well they're looking. The hemorrhaging has almost completely resolved and there is no more ROP. What a HUGE answer to prayer!

Pierce is doing so well at home. He's eating like a champ (taking about 3-4.5 ounces every 4 hours) and sometimes (actually only twice, but it's a start!) goes up to 6 hours at night without eating! He really is such a fun, content baby.

We did have to start Pierce on Zantac for reflux. Reflux is VERY common in preemies. We had a few days where P was screaming during and after his feeds and we knew this needed to change. So we called our pediatrician and she immediately called him in a prescription. Fortunately, we are on day 3 with the medicine and it seems to be working well. Please, please pray that Pierce's reflux does not develop into anything more serious and that the Zantac continues to work. Pray that he would continue to enjoy taking his bottles and that he would not develop an oral aversion.

Yep, this picture pretty much sums up what P was like before the zantac.

And this is him after.

Nik's mom stopped by for some cuddle time shortly after Pierce came home

Thank you all for your continued prayers and support.

Much love,
Lindsay

life at home

2011-08-15T23:34:00.000-04:00

I should've known to include in that last post that blog postings would become a little fewer and farther between since Pierce is home now. Indeed, finding time to update has become quite the challenge with a baby at home. I find myself wondering where my nurses (aka babysitters) have gone. :) No, really, we've been so enjoying our time with Pierce that it's been hard to put him down and head to the computer. But, we want you guys to continue following our story and praying for us, so I'm forcing myself to write. (Besides Pierce is probably glad that Mommy is leaving him alone for a little bit!)

I want to start out by thanking each one of you for sharing in our journey. It means so much to us that so many have taken the time to follow the blog and pray for our little guy. He truly is a miracle and God has answered our prayers. Here are a few shots from the day we brought him home:

Here's what we've been up to since P came home:

eat. snuggle time. sleep. diaper change.((Repeat 6-8x/day)) Yep, that's about it. Oh, and throw in the daily car rides and doctors visits. Just kidding. Well, partially kidding- that pretty much sums up our life right now!

You probably want to see pictures of all these exciting new things, right? (I mean, when we've waited 4 months to bring him home, EVERYTHING is new and exciting!) Well, you're in luck!

Here is the first week at home in pictures:

{eat.} (notice the milk running down his chin)

{snuggle time.}

{sleep.}

{doctors visits.}

Speaking of doctors visits, Pierce went for his first pediatrician appointment last Friday. He weighed in at...drum roll please...8lbs 6oz! Our dr was so excited at how well he has grown since being home.

Pierce loves to eat. And when I mean he loves it, I really mean he LOOOOOOOVES it. This is such a blessing because so many micropreemies have a hard time eating. In fact, many develop an oral aversions from being on the vent for so long. As of now, I think it's safe to say our little man does not have this problem, but we know that we're not out of the woods yet (many preemies can develop an aversion later on). Please join us in praying that P would continue enjoying meal time and that he would continue to shock us at how well he's growing. Pray that he would not develop reflux (another common preemie problem) as well.

It's hard to believe he used to look like this...

Now, he is starting to get quite a few squishy rolls! :)

How you can pray: Pray that Pierce continues to grow and gain weight. Pray as we meet with the neurosurgeon tomorrow to hear the results from the latest brain scan. We are continuing to pray that Pierce would not require a shunt and that his ventricles would be shrinking in size. Pray that God would give us and Dr.Heafner (the neurosurgeon) wisdom as we seek to make the best decision for Pierce.

We will update again tomorrow after we meet with the neurosurgeon.

Christ is All,
Lindsay

day 118

2011-08-10T00:32:00.000-04:00

Day 118- the most exciting news yet!

Can you guess what happened?
No? Well let me show you a picture to see if you can guess.

Perhaps a video will better explain.

That's right! After 118 LONG days in the NICU at Levine Children's Hospital, Pierce came home!!! In fact, he's sleeping right beside me as I type.

It happened exactly like they said it would. One moment we were thinking we'd never leave that place, the next we were walking out, baby in tow. Literally, here's what happened: we roomed in on Friday night (8/5)- things did not go well. Pierce did not eat very well and Nik and I's confidence was shattered. We felt for sure he wouldn't be going home anytime soon. Then, on Sunday night (8/7), we gave rooming in a second go. This time, they put us in a different room (we had suspicions that something was wrong with the oxygen meter in the first room). Things went SO much better. Pierce took his bottles like a champ, and Nik and I began to regain the level of confidence that we had developed throughout our 4 month NICU stay. So, on Monday morning, Dr.Engstrom came in and asked us if we wanted to take him home with us! We were thrilled. Then we immediately realized that NOTHING was ready for him at home. (Over the past 4 months, our time has been consumed with the back and forth trips to the hospital). SO, being the good parents we are, we took advantage of the free babysitting and asked if we could leave P with the nurses while we ran to the store to get a few things. The staff laughingly agreed.

And oh what a funny sight we were at the store. Bassinet- check. Stroller- check. Sheets-check. When I said we had nothing ready, I really meant it! My baby shower was on Sunday and everything was (and is) still sitting in the garage.

BUT nothing was going to stop us from bringing P home yesterday.

And so, we returned back to the hospital to pick our boy up. We had lots of tearful goodbyes. I underestimated how close I've become to the staff and fellow parents at Levine Children's Hospital. They've been our life for 4 months. We are forever grateful for all they've done to help our son (many stepped in and literally saved his life) throughout these past few months.

As we stepped out of that hospital with our almost 4 month old baby, I don't think I've ever been more scared in my life. Walking out the door, knowing that P was now our responsibility. Of course, it probably doesn't help that he comes with a load of gear- oxygen tank, apnea monitor, pulse ox monitor, car seat, diaper bag...
But nonetheless, God granted us peace. And once again, I was reminded that He is the one who is in control. He is the one who graciously allowed us this opportunity. And we are so grateful. We know all too well how quickly we could've lost this experience.

Last night and today was a lot calmer than I expected. Pierce has done remarkable. One benefit of having a chronic NICU baby is that they are used to a routine and they're used to waiting their turn. How does this play out at home? It means that P sleeps peacefully and entertains himself until we step in to feed him. It's marvelous! And even though he comes with an assortment of medical gear, I can honestly say I've never met a more low-maintenance newborn. It's nice!

How you can pray: First, please join us in rejoicing that God has brought us to this point. It still seems surreal to have our little boy at home with us! Secondly, remember to pray for Pierce's ventricles. We will go to P's neurosurgeon next week for an outpatient ultrasound and to discuss what our course of action will be. Please pray that the next ultrasound will be stable or smaller and continue praying with us that P can avoid a permanent shunt. Before P left the NICU, he had a hearing screen. Unfortunately, he did not pass. While it's a little to early to tell (many preemies fail the first test and go on to have perfect hearing), it's something we're definitely praying about. Please pray that when we go for our follow-up appt next month, that P will pass this test. Finally, pray for wisdom and guidance as Nik and I begin caring round-the-clock for P. His medical needs are far from over- we have 7 different dr's appts in the next 2 weeks- and we still have a LONG road as we deal with the effects of his extreme prematurity. Pray for continued endurance as walk this journey.

Off to bed for now. Have to treasure every moment of sleep these days :) I'll try to post some pictures from home tomorrow! And we will continue posting things as we find time. So stay tuned for exciting updates.

Thanks for sharing in our journey.

Christ is All,
Lindsay, Nik and Pierce

2011-08-04T23:22:00.000-04:00

"Count it all joy my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing." James 1:2-4

Today was a big day. Today, Pierce turned zero. In other words, today was Pierce's due date. And while I know that only 2% of babies are born on their due dates, it does give us a point of reference. Pierce's milestones will be measured from this date. In preemie world, they call this his "adjusted birthday." So, even though Pierce is almost 4 months old, today he turned zero. It's almost like going back in time. (I think I need this shirt for him!)And in some ways it's nice. It makes me feel like we haven't lost out on that much time with him. We really can't wait to bring him home and pretend that he's just been born. That may be some sort of denial (actually I'm pretty sure it is), but I'd really like to just spend one day with him at home and pretend like this NICU nightmare was just a dream. I'm sure reality would come crashing in quickly just as his apnea monitor started to ding, but it'd still be nice to have- a day of normalcy.

Today Nik and I rejoiced today as we reflected on Pierce's life. When you look at Pierce, it's hard to do anything but rejoice. After all, most everyone thought he wouldn't be born alive. But look what God has done. He is thriving and doing so well! And even though Pierce still has many hurdles to overcome, we can honestly say in our suffering, that our God is so good. He has worked so much good through our situation and for that we are SO thankful.

Tonight, Pierce is doing well. He seemed to be having trouble adjusting to the drop in oxygen flow (they switched him to .1 liters yesterday) and he wasn't taking his bottles as well as he usually does. He seemed more tired than usual. So tonight, they bumped him back up to .2 liters (this is likely the setting that he will come home on). Please pray that this slight change does the trick and that lil' man will go right back to eating (and not brady'ing) as well as he always does.

Also, please remember to pray for Pierce's ventricles. Pray that they will decrease in size and that Sunday's ultrasound will show improvement so that we can hold off on the shunt.

For those of you wondering, that BIG bump on his noggin' is his temporary shunt (VAD). One thing is for sure, this boy is going to have some battle scars to show off to his preschool friends.

We love you guys! Thank you for your continued support.

Lindsay, Nik and Pierce Franks

2011-08-03T18:38:00.000-04:00

Pierce has done great with bottle-feeding! He's really enjoying setting his own pace and has been eating almost 3 oz (90 mLs) at every feed! We are on day 3 of solely bottle-feeding (no feeding tube) and Pierce has gained at least 2 oz/day during this "tough love" trial. Last night he weighed in at 7lbs 7oz! That's great news because it means he's doing exactly what he needs to do to be able to go home with us. In addition, today they dropped Pierce to .1Liters and 100% o2. So far, he's doing well. Please pray that he can tolerate this (the lower the oxygen setting, the faster he'll be able to come off completely) and that bottle-feeding will continue to go well.

After a long wait to speak with the neurosurgeons, we finally heard back that they are still going to hold-off on placing a shunt. However, P's last 2 scans (this Monday and last week's) showed a very slight increase. What this means is that Pierce is reabsorbing most of his cerebral spinal fluid. In fact, there is only a slight amount that is not draining (thus causing the ventricles to increase slightly in size). The problem is that there is really no right answer right now. In most kids who require a permanent shunt, it is completely obvious (their ventricles get very big, very fast.) But Pierce's ventricles have remained stable in size for 3 months and are just barely getting bigger. So it appears that we are going to have to wait and see if Pierce can grow a little bigger and compensate for the >1% of fluid that he's not draining. The neurosurgeon seems to think that there is a chance that Pierce can outgrow his need for a shunt, before we have to place one. As frustrating as it is to not have an answer, it's good that we are not headed to the OR just yet. And there's still hope that we could avoid a shunt. Please, please join us in praying that God will heal Pierce's brain and that he will not require a shunt. Pierce will have another brain scan on Sunday. Please pray that his ventricles will be stable in size or smaller.

Tomorrow, August 4th is my due date. This date has been seared into my mind since I found out I was pregnant. And while I don't expect anything magical to happen tomorrow, it will definitely be a day of celebrating. What a miracle our little boy is! He has beaten so many odds. God has rescued him from what was deemed "certain death." And Pierce is thriving! We feel so blessed and tomorrow for sure, will be a day of rejoicing! Please join us in praising God for Pierce's life.

Much love,
Lindsay, Nik and Pierce

2011-08-02T00:06:00.000-04:00

Big news today: after weeks of begging, we finally got a dr who agreed with us that it was time to pull Pierce's feeding tube and practice some "tough love." Basically, instead of keeping P on a strict 3 hour schedule taking 58 mLs each time (in which they usually end up putting a portion of the bottle down the feeding tube due to P's lack of interest), P will be able to set his own schedule. Well, within reason. He'll have to eat every 2-4 hours, but he has no minimum or maximum requirement. Tomorrow morning, when the drs round, they'll evaluate how he did. The best news of all is that Pierce has done so well all day! He seems to be self-regulating and so far, he's taken more than he would've gotten on his other schedule. Please pray that this works. Pray that Pierce will have the strength and endurance to complete enough bottles to gain weight and thrive (his chronic lung disease makes bottle-feeding a very difficult task).

Also, we still do not have the results of the ultrasound. Please pray for stable or smaller ventricles. Pray that there has been no negative change so that we can avoid a shunt.

Many of you are probably wondering- when will P go home? To be honest, that's the question on EVERYONE'S mind. Literally every hour of the day, I'm thinking about that very thing. What a great day that will be! But for now, I'm afraid we have no answer. It's really dependent on when our little guy decides he can successfully bottle-feed. He'll also have to pass a few tests (car seat test, hearing test, etc.) and be released by the neurosurgeon and eye dr.

Our prayer all along has been that Pierce would be able to come before, on or close to his due date (August 4th). And while we are very thankful that Pierce is doing SO well, we are still unsure about when Pierce will be coming home. Will you please join us in praying that God would bring him home to us soon? Pray for patience and contentment for us as we are weary and tired of spending our days in the hospital. Pray also that God would demonstrate His glory as He continues to heal Pierce, and that through our suffering Christ would be glorified.

Much love,
Lindsay, Nik and Pierce Franks

2011-07-29T11:52:00.000-04:00

Day: 108
Weight: 7lbs 2oz

I haven't updated in quite a few days because quite honestly, there hasn't been much to update. *Insert yawn* We've had a string of uneventful, boring days. We love those. However, this whole waiting game is getting old. Basically, all we have left is to get Pierce to take all 8 of his bottles. Most days he takes about 4.

I know this shouldn't be discouraging, considering that Pierce could have far worse problems (and has had them in the past), but I think its almost a harder hurdle to get over because we can see the light at the end of the tunnel. It's like we have NICU senioritis- we are ready to be out of that place!

I try to remind myself that we are still ahead of schedule. Remember, Pierce wasn't even supposed to be born until Aug.4th.

We are so thankful that this weeks brain scan showed stable ventricles and the follow-up eye exam was great! What a blessing both of those things were.

Since we haven't had much going on this week, I've found myself reflecting on what it is that God is doing in my heart. I've bounced around ideas- maybe he's teaching me patience? Or perhaps endurance? The ability to trust in Him in all things? But I think I've got it. Contentment. Whenever I start getting anxious or impatient, I sense God reminding me to be content. Content in my circumstances. Content with the drive to/from the hospital. Content with leaving my baby with strangers. Content with trusting God in all things, including the minor things like bottle feeding.

And so today, I'm learning that lesson. And I hope that you too, will also find that when we are content in our circumstances, God can and will do amazing things in and through us.

Christ is All,
Lindsay

2011-07-25T17:53:00.000-04:00

Pierce has been quiet the past few days. It's so nice :) Really, we are just working on bottle feeding- hopefully its our last hurdle before coming home. Pierce was switched to chronic oxygen settings (what he can go home on) this morning and seems to be tolerating it very well. Please pray that he continues to do well on this.

Bottle feeding is going ok. Could be worse. Could be better. Pierce is offered a bottle at every feed, but is still only taking about 5 of the 8 bottles/day. I sense God growing patience in my heart. It's amazing what a slow and tedious process bottle-feeding is! Please pray that Pierce will advance quickly and that he'll become a pro at this bottle-feeding thing soon so that he can come home to us.

Also, Pierce had a brain scan this afternoon to see if there's been any change in the size of his ventricles. Please pray that they are the same or smaller. We probably won't know the results until tomorrow, but will post them as soon as we know.

Over the weekend, Pierce was finally able to visit with his Aunt Em and Uncle Chris (my brother). It was the first time they were able to hold him. Here are a few shots from their time with him:

Thank you all for your continued prayers!

Love,
Lindsay, Nik and Pierce

Pierce's 100 (+1) day celebration

2011-07-23T01:07:00.000-04:00

So I'm a day (or two because it is now after 12 am)late in posting this, but nevertheless, we celebrated Pierce's 100th day of life last night.

I tried to get a good picture of the little guy to record this special occasion, but he simply was not having it. Here was my first attempt:

And on my second attempt, he appears to be celebrating with me. (In reality, he was just flailing around and screaming because Mommy was taking pictures instead of giving him his bottle).

Pierce is doing so well. He has had quite a few quiet days since his ROP surgery, and for that, we are so thankful! Dr.Keuser decided to allow the nurses to offer a bottle at every feeding. We are so excited because once little guy is taking 8 bottles a day consistently, they'll pull out his NG (feeding) tube. As of now, he's up to about 5 bottles a day. Bottle feeding a preemie is TOTALLY different than bottle feeding a full-term newborn. It takes so much patience, time and patience. Did I mention it takes patience? Oh yes, and nerves of steel... every time Pierce starts working on his bottles, I immediately become glued to his monitors. At some point in almost every feeding (although he's getting better at this), his heart rate spaces out, slows down and "takes a pause," which causes P to turn blue and Mommy then panics. So I've decided for now to let the nurses do most of the bottle feeding. It'll be so nice when Pierce can become a pro at the whole "suck/swallow/breathe" reflex.

On his 101th day of life (tonight), Pierce weighed in at ... drum roll please... 6lbs 8oz! Can you believe that?! 6 1/2 lbs! He used to be 1 1/2. It's funny how big a 6 1/2 lb baby looks when it's taken you 3 1/2 months to grow them to that size.

As of now we have 2 major hurdles to clear before Pierce can come home with us: bottle feeding and going onto chronic oxygen settings. Really, there's no way to predict when these things will be accomplished. It's totally dependent on Pierce. And as we know, our guy has a mind of his own. So we are kind of a "hurry up and wait" mode. Nevertheless, we are thankful that this weeks hurdles are smaller than the previous weeks.

These past few days, I've been trying to take time to reflect on the goodness of God and on how far he's brought us. I know that He has used this experience to change both Nik and I. And I know that He is going to bring Pierce home with us soon. What a day that will be!

Much love,
Lindsay

2011-07-21T00:01:00.000-04:00

Pierce had a great day today. He finished his bottles like a champ. In fact, he did so well, that the nurses are going to ask the dr. if he can be allowed to take more than 4 a day.

Also, his follow-up eye exam went well. Dr.Gillig said that there is some hemorrhaging, but that is common and to be expected. For now, the ROP seems to have calmed and the retina is nice a flat (no detachment, which is good!). She said they'll just have to follow it closely (weekly eye exams) and make sure that it resolves on its own. Pierce tolerated the eye exam really well... I really don't know how he does it. I think I'd pass out if they came near me with that eye probe.

I was also able to talk with the neurosurgeon about the possible shunt. He said that because there was no change in the ventricle size this week, we could definitely postpone shunting until/if there was significant change or worsening. Pierce's ventricles have remained stable for the past month and a half, and there's a chance he may not require a shunt (yeah!). For now, the approach we are going to take is to monitor the size of his ventricles with weekly (maybe monthly if there's no change for a while) ultrasounds and we will see Dr.Heafner in his office once Pierce goes home. Please continue to pray that his ventricles will drain on their own and that P will not require a shunt.

Thank you all for your prayers and support.

Love,
Lindsay, Nik and Pierce

2011-07-20T01:33:00.000-04:00

These past few weeks, it’s been hard to feel like we’re not hanging on by a thread. Indeed it feels like everything is being held together by one small, fragile strand, which at any point could give way and everything could unravel. When you have a micropreemie, it’s hard not to feel this way. Everything, and I mean everything, is a struggle. Bottle feeding. Reflux. Eye exams. Hearing tests. Hemoglobin checks. Oxygen levels. Brain scans. … oh the list could go on and on. And don’t forget those important numbers. You know, the ones flashing on the screen, alarming you at every beep. Indeed these things are not the “normal” parenthood experience. Most of them, not life-threatening, but when they’re the things standing in the way of bringing your baby home, they become so important. Sometimes I find myself wondering what it would be like to just have a “normal” baby. Or even an older preemie.

I’ll admit these past two weeks I’ve dealt with some intense feelings- frustration, bitterness, anger, impatience. And while they’re definitely not something I’m proud of, there’s no denying that they are there. I find myself growing bitter towards the parents of healthy kids who complain about an ear ache or a slight fever. Everything in me wants to scream, “Do you know how fortunate you are?!”

But alas, I’m only human. And a sinner indeed. God has been so gracious in reminding me of how far He has brought us. I’m deeply aware that we could easily not have these struggles…Pierce could not have been born alive. But God chose to save Him. He has chosen to perform miracle after miracle in P’s life, and for that I am so thankful.

I know this is definitely more venting than I normally allow myself to do on the blog, but I wanted to share what God has been doing in my heart. Last night, Nik and I read this passage before going to bed. It had been a long day, full of uncertainties and I felt inclined to continue in my grumbling. And then God used this passage to speak to me:

4 Rejoice in the Lord always; again I will say, Rejoice. 5 Let your reasonableness be known to everyone. The Lord is at hand; 6 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:4-7)

I was immediately convicted of my wrong attitude. I was convicted of my anxiety. My worries, my fears- all of those are sinful. They demonstrate a lack of trust in the goodness of God. I was convicted of the idolatry in my heart. In many ways, Pierce has become more important to me than Christ. But the truth is, Pierce is ultimately God’s child, not mine. And Christ is worthy of trusting in completely and following wholeheartedly. He is the one that has brought Pierce this far, and I believe wholeheartedly that God is going to see him through. So tonight I am trusting in that as I’m slowly learning to turn my fears, doubts and complaining into shouts of joy for what God has been gracious to do in our lives.

And finally, I mentioned earlier today that a dear friend, Gina and her husband Jay welcomed a sweet baby girl, Ruthie early this morning. Ruthie was a tad over 24 weeks and weighed in at 1lb 9oz (just 1 oz bigger than Pierce). While my heart breaks for this family because I know the long road they’re facing, I know that God is going to demonstrate His glory in this sweet little girl. Oddly enough, through their difficult time, God used this situation to humble me. He reminded me of how far He has carried me. And He reminded me of how, because of this experience, I will never be the same. I am now able to minister and relate to women who are going through similar experiences. What a joy that is! Please join me tonight in praying for Ruthie and ask God to pour out His grace on this family.

Quick update on Pierce: P had a relatively good day. He completed all of his bottles. He is experiencing some reflux- a normal problem for preemies. As a result of the reflux, his o2 levels are fluctuating. But in between meals, he seems to prefer to stay around 21%, which is very good! We still have yet to talk with the neurosurgeon, but the ultrasound did reveal that the ventricles were stable in size this week. This is very good! The general consensus (neonatologist, nurse practitioner, etc) is that we should hold off on the shunt. Nik and I feel confident that for the time being, this is the right decision. Please continue to pray that Pierce's ventricles will decrease in size on their own and that he will be able to avoid having any more surgeries. Also pray as Pierce will have his first eye exam tomorrow to see how he is recovering from the laser surgery. Pray that his ROP will have stopped progressing and that the laser treatment was successful in restoring his vision.

Christ is All,
Lindsay

2011-07-18T23:23:00.000-04:00

Today was a pretty quiet day. Pierce has been doing relatively well- still on 21% o2 and 2 liters. Pierce did have his ultrasound done earlier today. We waited all day at his bedside for the results and wouldn't you know, right after we left the neurosurgeon came in to update us?! So the unofficial report (what was relayed to us when we got back in) we got was that there was not much change in the scan this week and that we could either proceed with placing a shunt at the end of this week (the neurosurgeon is leaving to go out of town for 3 weeks after Friday) or we could wait- no big deal (Easy for him to say. To us, it's a very big deal!). Unfortunately we don't have much more info. We will wait to talk with Dr.Heafner tomorrow and hopefully have some of our many questions answered. Please pray that God grants us wisdom as we talk with the Dr. and that He guides us to the right solution for Pierce.

In other news, Pierce began bottle feeding again today after a few days off from surgery. So far we've had two failed attempts- both times he seemed rather disinterested in the bottle. Please pray that Pierce goes back to taking his bottles well like he was doing before surgery. This is a big concern because often times babies can develop an oral aversion after being intubated. Please pray that this is not the case and that our little guy will start eating soon.

Some days it feels like we've come so far, other days it feels like we still have so far to go. There are still so many unknowns on the table and we literally just have to take it one day at a time.

Thank you all for your prayers. Please continue to pray for Pierce and for endurance for us. We will update you as soon as we know more about the shunt.

Christ is All,
Lindsay, Nik and Pierce

day 95

2011-07-16T23:58:00.000-04:00

Day: 95
Weight: 6lbs 1.9 oz (some of that may be fluid from the surgery, but either way he broke the 6lb mark!!)

Pierce is recovering well and was able to move back to NPCN early this morning. We really couldn't have asked for a better recovery. In fact, because of a big steroid boost before surgery (preemies who are on steroids for a long time require a "stress dose" of steroids because their bodies have a hard time coping with stress and don't produce enough cortisol to deal with the stress), Pierce has been on 21% o2 and 2 liters. He has had little to no spells in the past few days. In fact, he's never done this well in his entire life! It's so nice! I keep reminding myself that he may slide backwards a little bit after the steroids are out of his systems, but then again, Pierce is always known for surprising us, so maybe he won't?

So overall, Pierce has had a nice recovery. He's still pretty uncomfortable and agitated by the puffy eyes and those awful eye drops he receives every 3 hrs. It's so hard to see him upset. Perhaps the hardest thing of all is leaving him at the hospital, coming home and wondering if he's upset and if anyone is caring for him. But we love our nurses and know that they are doing everything they can to care for him and I feel truly blessed by the many wonderful ones that God has placed in our lives.

We are so glad to be back in Progressive. I think it's because we know that we are just a few steps away from going home.

The biggest things on the agenda are to:
1)get him up to 8 bottles/day (Before surgery he was taking 4 pretty well. They'll resume bottle feeding as soon as he is more alert and it looks like he's active enough to take them),
2) switch him over to "chronic settings" on his cannula. This will be 100% o2 on .5 liter or .25 L. He can go home on these settings as soon as he's tolerating them well,
3) and to avoid any surgeries (praying, praying, praying for no shunt) or infections

Please continue to pray for Pierce's brain scan on Monday. Pray that his ventricles will be much smaller in size and that he will not require a shunt. We know that our God is able to heal Pierce and we are trusting in His goodness during this difficult time of waiting.

Thank you all for walking this journey with us.

Much love,
Lindsay

recovery

2011-07-15T09:02:00.000-04:00

Once again, God has been merciful in granting Pierce strength to endure and recover from another surgery. The laser surgery didn't get started until about 6 (they took him back around 430 but were a little delayed for some reason) and by 830, Dr.Gillig came out to tell us that she was finished. She felt good about Pierce's prognosis and thinks that he will have a good outcome since they treated the ROP early. She will come back to reexamine him on Sunday and then again on Wednesday. Please continue to pray that this surgery will be used to heal his eyes completely and that he will have no further complications.

Nik and I didn't get much sleep last night as we stayed in our old apartment (aka NICU sleep room #2) to be close to Pierce. I really didn't anticipate all of the negative feelings that I associate with this place to come rushing back.I think Nik and I both suffer from a little post-traumatic stress disorder in regards to the NICU. (That's actually been proven to be common among NICU parents!) But as we stayed here last night, and I dealt with all of my worries and fears, I tried to remind myself of how far God has brought us and that seemed to bring some comfort. It is odd to now have the "fat" kid in the NICU. I remember the days of seeing the 6 lb baby next to Pierce and thinking it was the biggest baby I'd ever seen. Funny how your perspective shifts so easily.

Perhaps one of the things I was dreading the most was having to see lil' man back on the vent again. We were told not to expect him to be able to come off for a few days (depending on how wiped out he was from the surgery). But, once again, God was gracious. We were able to see him about an hour after surgery and wouldn't you know it, he was wide-awake, getting a bath and on the nasal cannula at 23% o2 and 4 liters!!! What a shock! I can't tell you how relieved I was to see him like that. Apparently as soon as P was awake, he was really mad that he had a tube down his throat. His nurse insisted that they either sedate him or extubate because she didn't want him suffering (thanks Ashlie!).

We had one of our favorite nurses last night and it made me so comfortable to know who had him. She got him all situated and comfortable and even put some little sunglasses on to protect his eyes. The big question of the night was whether or not Pierce's endurance would end and whether he'd have to be reintubated.

But I just went in to check on him, and he's doing great! He's at 21% and 4 liters and looking great. He's a little bruised from all the poking they did yesterday to get an IV in him, his eyes are puffy and red, and his body is a little swollen from all of the IV fluids, but other than that, he looks great. I think his biggest frustration is that he is hungry. He has worn out his pacifier waiting for someone to feed him. Hopefully, he'll be able to be fed as soon as the drs. round this morning.

Please continue to pray for healing and an easy recovery. Pray that we will be able to get back to NPCN in no time. And remember to join us in praying that Pierce's next brain scan will show that he will not require a shunt. This is probably our biggest concern right now as it would mean yet another surgery to endure.

We will update later today to let you know how P is doing. Thanks for all the prayers and support!

Love,
Lindsay, Nik and Pierce

surgery #3

2011-07-14T00:04:00.000-04:00

Pierce had another eye exam today and they found that he has now progressed to stage 3 in the right eye and stage 2 in the left eye. While this is not much of a change, the eye dr noticed that he is developing plus disease (a condition in which the blood vessels in the eye begin to twist and pull at the retina). This is very serious and not something that can go untreated. She immediately called in her colleague for a second opinion and after an hour of poking and prodding our little man with things that look like something used during a CIA torture session, they both decided surgery needed to be done soon. In fact, they were so concerned that they tried booking the OR today, but quickly realized that P had just eaten (he has to have an empty stomach for surgery to avoid aspirating). We knew that if his ROP had progressed, surgery would move quickly, but you can never prepare yourself for the emotions that flood over you when things like this happen.

In order to prevent the retina from detaching, the surgery needs to take place within the next 72 hours. So tonight, here's what we're up against: At noon tomorrow, Pierce will have his feeds stopped and an IV will be placed. They will come to get him around 330pm to take him to the OR. He will be placed under anesthesia and go back on the ventilator. The surgery will begin around 430 and will take between 4-6 hours. Fortunately, the surgery is minimally invasive as it is done by laser. Perhaps the scariest thing is that Pierce will go back on the vent. There's really no way to know how long it will take him to come off the vent once he wakes up- some babies take a few hours, others take days. He will go back to the NICU while he's recovering, which could be 1-4+ days.

In addition to this unexpected surgery, we met with P's neurosurgeon today. Unfortunately, we didn't get many answers, but we were able to draw a few conclusions (at least for now) about a VP shunt. We were told that Pierce is reabsorbing/draining 99% of the fluid in his ventricles, which is very good! Most babies with a grade 3/4 require a shunt almost immediately and for a long period of time, but Dr. Heaffner thinks that if Pierce requires one, it will likely not be for an extended period of time. The remaining 1% that is not reabsorbing is what is causing the slight swelling. There is still a chance, though small, that Pierce could "outgrow" his need for a shunt if we chose to wait and just monitor his ventricle size. Depending on the ultrasound results on Monday, Dr.Heaffner may be comfortable sending P home without a shunt and following him outpatient for awhile. However the neurosurgeon would like to go ahead and place a shunt as soon as possible. We think this is probably because he feels he will need it down the road. Even though he feels this way, he assured of us of 2 things: 1. he's not completely sure Pierce definitely needs a shunt (in other words, he thinks Pierce will most likely need one, but there is still a chance this could resolve on its own) and 2. waiting for a few repeat ultrasounds will not hurt Pierce in any way. Of course, Pierce has not followed the "norm" on this matter as he has been known to do in the past. It's unusual that a child would be able to go so long without having his VAD tapped (P went almost a month) and then develop swelling in the ventricles later on. But for now, Nik and I felt it was best to wait until we know that a permanent shunt is needed.

As a side note, Pierce is doing really well tonight. He has come down on his o2- staying about 27-28% and is having little to no spells. I think the caffeine, or lack of, was the problem and for now we seem to have that under control. Bottle feeding is going well. He took all 4 of his bottles yesterday. For this, we are so thankful because it means we are one more step closer to going home.

I know this goes without saying, but please pray for us tonight. It seems so surreal that our baby will have to undergo yet another surgery tomorrow. Our hearts are totally broken for him. Pray that his body heals quickly and that he will be free from pain. Pray also that this surgery will be successful and that Pierce's vision will be completely restored as a result. And lastly, pray that his ventricles will reduce in size and that next Monday's ultrasound will show that they are stable in size.

We will be updating throughout the day via twitter so be sure to check out the side bar to hear what's going on.

Christ is All,
Lindsay

3 month mark

2011-07-12T19:34:00.000-04:00

Happy 3 month birthday Pierce!

It's hard to believe Pierce was born 3 months ago. Some days it feels like these past 3 months have flown by. Other days, like today, the journey seems so long.

Pierce is doing well. Still stable on 2 liters and 30% o2. He had an apnea study done for 24 hours yesterday and this morning they analyzed the results. Long story short, they decided to give P his coffee (aka caffeine) back in an attempt to reduce the # of bradys and desats he has throughout the day. If he's anything like his daddy, he'll really appreciate having his caffeine back. They also decided to give him a spot of lasix (a diuretic) to draw off some fluid from his lungs and hopefully help him come down on his o2.

Pierce is 91 days old, or 3 months old today. He weighed in last night at 5lbs 13 oz. Maybe we will hit the 6lb mark tonight for his bday?! I'm still adjusting to having a "normal" sized baby. And I can't believe that he has now outgrown all of his preemie outfits. He's taking 4 bottles a day (every other feeding) and typically takes 3 of those really well. We can really see an improvement in his stamina.

While Pierce is doing relatively well, today was a day with what felt like a ton of bad news. Long story short, we had a total turn of events in regards to the VP shunt. It looks as if lil' man's last ultrasound showed that his ventricles are significantly larger than the last scan showed. This means that we are now looking at a permanent shunt. Everyone is a little baffled as to why the ventricles have been stable and were in fact smaller on the previous scans and I can't say that today's conversation didn't come as a painful blow. I know a shunt is not the end of the world, but we're a little confused as to where to go from here. We don't have much more information on this tonight as we are planning on meeting with the neurosurgeon tomorrow at noon to discuss our options. Please, please pray for us. Pray for wisdom for us and for P's drs. We are continuing to pray that Pierce will be able to avoid having a shunt placed, especially since just a few days ago we were told he would not need one. Please join us in praying for this.

In addition to the shunt surgery, Pierce is also facing possible laser surgery for his ROP. Tomorrow mornings eye exam will be crucial in helping us determine if or when this will occur. Please continue praying with us that this eye exam goes well and that the ROP is stable or has begun to reverse itself.

Lastly, pray for Nik and I. I know a shunt and eye surgery are not the end of the world and that Pierce could manage just fine with both. I guess the shunt surgery would be harder to deal with since we were so excited thinking that we'd cleared one hurdle. Pray that we would have endurance to finish this last stretch of the NICU marathon strong. And pray that in all we do, Christ will be glorified through us and in Pierce's life.

Christ is All,
Lindsay

Still Journeying On...

2011-07-11T09:41:00.001-04:00

While we have come so far, there is still so far to go. We cannot thank everyone enough for their support throughout this whole thing. I call it a "thing" because I am just not sure if one label covers what's happening. This time has been a blessing and a curse, a trial and a grace all at the same time. What has happened over the last few months will leave an indelible mark on our lives. And like everything in life, how we respond to it will make us better or worse people.

Pierce is doing better today and we are still praying that he can come home on or before his original due date of August 4th. Pierce is stable, but stable is a relative term. Just because Pierce is bigger does not mean he is on the same level vitality wise as a baby his size that was born at full gestation. Even in the preemie world, 23-25 weekers are in a whole different category from those that are born at 27-30 weeks and even further from 31-40 weekers. The lungs aren't even fully developed at 23 weeks. That means that for the first 2-3 years of Pierce's life, RSV, which is a virus that causes the common cold in adults, can kill him. From Oct-April he will literally have to be quarantined. Just from the "minor" set backs of the past week, Pierce has had several spells where he turned blue and his heart rate dropped into the 30's.

So, the journey is long and is far from over. In addition to the above concerns, only time will tell if Pierce has incurred Cerebral Palsy. I say all this to put things into perspective. Nevertheless though, we have great confidence in our God. Look at what he has done so far! Pierce isn't suppose to be here. Just this week, several medical professionals told us that they have never seen anyone survive that had a potassium of 9 or higher; Pierce's was 10.3 for some time with no hope of reversing itself. Yesterday, we told an NNP that the neurosurgeon has said that Pierce will likely not need a shunt and she couldn't believe it. It is unheard of for babies with a grade IV brain bleed to not need a shunt.

Let's keep moving forward and let's keep witnessing God display His glory to LCH and the world. That is what He is doing. I recently heard the statement, "Trying to prove God exists is like trying to defend a lion. It's unnecessary, just open up the cage." We cut ourselves off from the very meaning of life when we say God doesn't exists or that He is impotent to save.

I ask you to continue to pray. Pray that Pierce would not need eye surgery, that his brain would fully heal, that he would not develop Cerebral palsy, that his lungs will grow strong, and that he would not incur any infections. Due to Pierce's prognosis, Lindsay will not be working in order to stay home with him. I, Nik, am looking for a stable job to provide for my family. We are praying that God would open up a ministry position that will have the most impact for His Kingdom.

Thank you's: I haven't been posting much lately, but I wanted to quickly get thanks to some people that have really blown us away through their care and generosity. The RTS women's cabinet led by Nicole Chitty and Teresa Simons began all the fundraising stuff and we cannot thank them enough. Our friends Christy, Brandy, Sarah, and Ashlyn have done so so much for us; you have blown us away. Ashlyn is also the one that organized the food program. Our dear friends Kevin and Michelle w/family spent two weekends holding a yard sale on our behalf. Dozens of comic book collectors/dealers that are members with me in an online forum donated thousands of dollars worth of comic books to be sold for us. I had never even spoken to some of these people prior to all this. Lastly, just this past week Good Shepherd Church here in Charlotte chose us to be the recipients in their annual Friends of Timothy golf tournament that will be held on Columbus Day. More info is coming on that, but I cannot tell you how Good Shepherd has demonstrated the love of Christ to us since day one. Sorry for another long post, but I had to thank some people. We love you all.

With hands lifted and open,

Nik, Lindsay, and Pierce Franks

hanging tight

2011-07-08T18:28:00.000-04:00

Pierce has been much more stable today, although he is definitely having a lot more spells (bradys and apneas) than normal. Currently he's on 2 liters at about 30% of o2. Still not where he was at before all of the changes were made, but definitely a tad bit better. Right now the theory is (at least my theory and a few of the nurses/doctors) is that all of the changes at once really through lil' man for a loop. Of course the concern would be that Pierce is not tolerating being off the steroids, but because we have SO many other things to blame, and because he was on such a small dose (it was almost ridiculous how small his dosage was), I really don't feel that the steroids are solely to blame. So now the waiting begins. They won't restart any of his meds unless they absolutely have to and since today seemed better than yesterday, they want to give Pierce time to adjust. The neurosurgeon's PA did suggest tapping the VAD today in an attempt to rule out that there was any pressure build-up in the brain that could be causing this. I definitely think that was unnecessary, but at least we know for certain that that is not the problem. Please pray for patience as we wait. For wisdom for the doctors. And for healing and rest for Pierce. Pray that his tiny (Remember, in any normal situation a 5lb baby would still be considered tiny. We just have a skewed perspective now) body would adjust to the changes without requiring any further medications. The plan now is to wait and see how Pierce does without these medicines. They're checking his hemoglobin in the AM to rule out anemia-related episodes. And if he continues having these spells, they'll put him back on the caffeine first as it's the most benign of the drugs. If that still doesn't work, we are looking at inhaled steroids, which are a little less invasive and definitely carry lesser risks. Last ditch effort- Pierce will have to go back on steroids. But he would have to get much worse for us to get to that point. Please pray that Pierce grows stronger with each day and that he is able to come down on his oxygen soon.

It's hard on days like today-those where you feel like you're making NO progress and you're so far from bringing your baby home- to be joyful. But today, on the drive home, I praised God for getting us to this point. I was immediately reminded that for about the first 6 weeks of Pierce's life, each setback was a potential life/death situation. In fact, today Pierce's doctor reminded me that "he simply is not supposed to be here" according to medical standards. And I smiled, because I know, he is supposed to be here. There's a reason (or many!) that God chose to save Pierce time and time again. God is the One who ordained everything that has led us to this point and He is the one who will heal him and bring him home to us soon. Trusting in that tonight in the midst of our discouragement.

Much love,
Lindsay

steps backward

2011-07-07T19:55:00.000-04:00

To understand where we are at today, let me recap this weekend. Last Friday, Pierce was finally taken off his steroids (they help his lungs). Finally. After 12 long weeks. His doctor told us that in his 30+ years of medicine, he had only seen a few kids stay on the steroids longer than Pierce. We knew they needed to go and that it was time. However, what we weren't prepared for was for a new doctor (who just rotated through on the weekend) to come in a take away Pierce's caffeine (which helps reduce apnea in preemies) and lower him from 2 liters to 1 liter on Sunday. We were excited because this meant we were that much closer to going home (babies can actually go home on 1 liter or less of oxygen). However, we were worried that all of the adjustments were a little too close together. So by last night, all of the many changes caught up with Pierce. We watched as his sats dropped lower and lower to the point where the entire team was called in to work on little man. Immediately all of the memories I'd suppressed of our early NICU days, flooded back in.

In micropreemie world, steps forward seem to take FOREVER while steps back go so quickly. In a matter of 30 minutes, Pierce was at 50% o2 on 3 liters. Not a good place to be. Fortunately as the night turned in to morning, they were able to get him back to 2 liters, but he's still cruising on about 30% o2. A little bit better, but definitely not the 21% we were on a few days ago.

Perhaps the most frustrating thing of all is that because they made so many changes so rapidly, it's hard to pinpoint what is causing Pierce to struggle. Is it the steroids? The lack of flow? The caffeine? Or perhaps another problem we are not thinking of- his hemoglobin has been fairly low for the past few weeks and a concern would be that he is needing a transfusion. Or, another thought is that he could have an infection. Of course, we are hoping that it is one of or a combination of the things that were changed over the weekend.

Today when I talked with Dr.Kueser, he said that although this is a set back, it's not one of the worst we've experienced. (Dr.Kueser was with us through Pierce's first week of life.) I'm so grateful for that! And on a positive note, he told me that the neurosurgeon called him and told him that he's fairly certain Pierce will not require any shunt! What an answer to prayers.

Pierce's eye exam revealed that his left eye remained stable at stage 2 ROP while his right eye has progressed to a mild case of stage 3. While we were hoping there'd be no change, this still does not mean that he will require laser surgery. They'll continue with the weekly eye exams and intervene if the ROP gets much worse.

So, in short, we've taken a few steps back over the past days, but it definitely could be a lot worse. Please pray that Pierce will be able to rest easy and build up endurance so that he can come down on his oxygen. Pray for healing in both his brain and his eyes.

Much love,
Nik, Lindsay and Pierce

look how far we've come...

2011-07-04T00:03:00.001-04:00

Remember the pen picture? You know, the one where Pierce was almost the size of a ballpoint pen? In case you don't, or missed it, here it is:

Well, in the past 11.5 weeks, our little guy sure has grown. Take a look at him next to the same pen now!

He's huge!

Tonight Pierce weighed in at...drum roll please... a whopping 5lbs 1oz! Here is our proof:

We had a pretty good feeling he'd break the 5lb mark tonight, so we had the camera rolling. Enjoy!

Pierce is doing so well. He is up to 4 bottles a day (he takes a bottle every other feeding). He looks and acts like a healthy, full term baby (minus the occasional brady and desat every now and then). Nik and I have been so thankful to the Lord for this miraculous turn of events.

Early in Pierce's life, Nik posted something that I continue to be reminded of almost everyday. He said, "Please pray. Jesus can sustain him and know that if Pierce lives it is because the Lord has rescued him. Know this, that we are going to praise God in Christ regardless of the outcome. If Pierce lives, he is the Lord's. If he dies, he will be with the Lord. DO NOT give up praying for Pierce! God is able to sustain him." This was written on the 4th day of Pierce's life, the morning we were called in to hold him because we were told he would not make it much longer. I remember the doctor telling us that anything past that point would be a miracle. We prayed and pleaded. You prayed alongside of us. And we felt everyone's love and support. We knew that God would be glorified either way, but we never stopped praying for healing. I don't ever want to forget that place we were in- so broken, humble, totally dependent on God. So tonight, as I tucked Pierce in for the night, I thanked God. I thanked him for granting us the opportunity to witness His power and might through someone so tiny. I thanked him for rescue Pierce from what was declared as "certain and imminent death." And I thanked God for how he has used Pierce to impact so many of you. Isn't it crazy how God takes something so small, so fragile and raises it up to glorify Himself?

Please take a moment to rejoice with us in God's goodness tonight.

Much love,
Lindsay

PS- Pierce has another brain scan tomorrow. Please pray that it shows that the ventricles are continuing to grow smaller. Also, another ROP eye exam will be done on Wednesday.

thursday night report

2011-07-01T00:06:00.000-04:00

We are 79 days into this journey. Some days go faster than others. Now that we've seemed to hit a plateau, most days just seem boring and uneventful. We like those kind of days.

These days there's not too much going on over in bedspace 24 of the step-down unit. Pierce is doing well and working on his bottle-feeding skills so that he can come home with us soon. He is now up to 3 bottles/day and he gets 40mL at each feeding. Today he is 35-weeks corrected age. That's right, just 5 weeks shy of the magical 40-week mark. It's hard to believe that had he not come early, I would have been waddling around anxiously awaiting his birth. Sometimes I find myself daydreaming about what that would have been like. What would it be like to have the nursery and our house prepared for him? To attend my baby shower and be uncomfortably large? And what about those late night cravings and braxton-hicks contractions? Oh, the dreams. But then I snap out of it. I remember how blessed I am. Those meaningless little things I sometimes long for, they're worthless. If I had carried Pierce to full-term, we wouldn't be where we are at today. Quite frankly, we wouldn't be the people we now are. We wouldn't be as mature, or as grateful. We've been seasoned by the trials of this life, and have come out with a different outlook on things. I'm sure that if Pierce were to be a standard 40-weeker, I would've been complaining about stretch marks, breastfeeding and lack of sleep. But what an appreciation for life we have now! And how we love watching what God is doing in and through our story.

Nik and I are starting to get excited about Pierce's homecoming. Things are being prepared. Clothes are starting to get washed and the nursery is slowly (I think I'm following Pierce's pace and taking "micropreemie" steps with this one) coming together. Speaking of the homecoming, it looks as if Pierce may avoid both a shunt and ROP laser surgery. The verdict is still out on both of these, but it appears that for now, both issues are resolving themselves. Also, they are thinking that he has a hydrocele instead of a hernia (a common issue where fluid drains through the abdominal openings). This would be great as it would likely mean no surgery as well! Our prayer lately has been that Pierce would be able to avoid any further surgeries and that he would get home to us soon. If he does in fact avoid surgeries as well as any other infection/complication, Pierce could very well come home to us around his due date- August 4th. {*Insert loud shouts for joy!}

Some of my dear friends are helping us get ready for his arrival... they bought him a carseat! Special thanks to Ashlyn, Becky, Brandy, Sarah, Erin and Christy for getting Pierce his first "cool" ride. :) I know he will love it. And the NICU nurses can now stop asking me to get his carseat ready for him. Haha!

Thank you all for your continued prayers and support. We continue to be blown away by everyone's generosity and love.

Much love,
Lindsay

the 11th week update

2011-06-28T23:25:00.000-04:00

"Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen." Ephesians 3:20-21

Pierce is 11 weeks old today. I know I say this in almost every post, but it is hard to believe how BIG he is! I'm in awe when I think back on how far we have come. Tonight, Pierce weighed in at 4lbs 10.1oz (2100 grams). That's a lot bigger than the mere 670 grams he weighed 11 weeks ago. He's so big, that his preemie onsies (the ones that were far too big 2 weeks ago), are now too small! And if he keeps growing at the same rate, he'll go down as the biggest micropreemie to leave the NICU :)

Pierce had a great day today. We learned today that his brain scan yesterday not only revealed that the ventricles were stable in size, but in fact, they were smaller! This is the best news we've received yet and while it's still too early to definitely say that he won't require a shunt, it certainly increases his odds. We are so, so thankful for that and are trusting that this is God at work, healing our little guy. God is definitely answering our prayers.

Pierce did have to get his first round of vaccines today :( However, because he's had such a tough road, he didn't seem to even mind them too much. In fact, judging from his reaction, I think he would rather have shots than have his diaper changed! Please pray that he won't have any negative side effects from these.

Today, Pierce has also been reunited with some of his long lost loves, formerly known as his wonderful NICU nurses. His primary, Lindsay popped by for a visit and a quick cuddle and then tonight one of his other favorites, Gail came to work in Progressive Care and was able to get him on her assignment. Let's just say, he's one happy fella. He loves his nurses. (and we do too!)

Here's a pic we captured of Pierce with Gail tonight. Notice how lil' man is attempting to pull out his feeding tube while we are preoccupied. Sneaky. Very sneaky.

Also, check out Pierce with his best friend, the pacifier! (Notice the temper when it falls out! I think we are in trouble)

Thank you all for your continued prayers and support. Please keep praying. Pray that Pierce remains free from infection and that he will require no surgeries. The verse I posted at the top is one that has run through my head countless times in the last 11 weeks. Repeatedly, God has poured out His love for us. He has shown us that He is able and willing to do far more than we ever hope or expect. And today, as we heard the miraculous results of the brain scan, I was once again reminded of that. God has done, and will continue to do, far more than we ever expect or hope for in Pierce's life. Praising Him for that tonight and trusting in Him for the future.

Love,
Lindsay

update

2011-06-26T22:17:00.000-04:00

What a busy weekend! Full of painting (the nursery), visitors and hospital visits. Pierce has remained stable and has had a quiet weekend. He weighed in at 4lbs 7oz tonight and was about 15 1/2 inches long. I can't stress enough how much we enjoy such boring days! We are so, so thankful to God for bringing us to this place (sometimes it felt like we'd never get this far!).

Pierce was a little puffy these past few days, so the Dr. ordered a dose of Lasix (a diuretic) to draw off some fluid. Fortunately, the fluid build-up didn't seem to affect his lung function at all. He has remained at or around 21% of o2. Apparently nutrition affects fluid retention, and since micropreemies have little to no nutrition when they're first born, this is a common problem among their population.

Pierce has two tests this week- an eye exam (on Tuesday) and a brain ultrasound (tomorrow). We are praying fervently that he will not require any more surgery and that both tests will reveal that the issues are resolving themselves. Also, there's a good chance little man will be dropped from 2 liters of o2 to 1. Pray that all goes well there.

Thank you all for your love and support.

Much love,
Lindsay, Nik and Pierce

day 73...

2011-06-25T00:09:00.000-04:00

Day: 73
Weight: 4lbs 4.8oz
Length: a smidge over 15 inches

We are 73 days into this journey. 73 LONG days. And yet, with each day that passes, we are one more day closer to bringing our son home with us. Tonight, as we held Pierce, Nik and I thanked God for his life. We thanked Him for how He has used Pierce's life to touch the lives of so many. It truly is amazing how far Pierce has come. In fact, the staff is baffled at how well Pierce is doing. The other day, our nurse told us that she didn't believe them when they said he was a 10 week old 23-weeker. She said she's never seen a baby born that early do as well as Pierce is doing at this stage in the game. Many are quick to say things like, "He's a fighter," or "He's so strong," but we know this healing is of God. God has answered so many of our prayers affirmatively and for that we are so thankful.

I mentioned this earlier today, but we learned this morning that the neurosurgeon is now saying that Pierce may be able to avoid having a permanent shunt placed! This is great news because we all thought that he would most likely need one soon.

I know we have posted specific prayers all along on this blog and I'd like to quickly share with you my reasoning. One of the things God has taught us, through this difficult time, is that it is perfectly ok to pray specifically. It doesn't threaten Him one bit to go before Him and pray for Him to give you something. Throughout these past 10 weeks, we have begged and pleaded with God for many specific things. And while He has said "wait" and "no" to a few, He has said "yes" to many. John Calvin once said that when we pray specifically, we pray with a heart that is willing to accept God's will even if it does not align with ours (paraphrase). But praying God's will be done, does not mean that we cease to ask our Heavenly Father for something we want.

And so tonight I ask you to join us in praying for these specifics: It is our prayer that Pierce will be able to avoid any more surgeries (no shunt, laser eye surgery or hernia repair), that he will be able to come off oxygen before he leaves the hospital (they're planning on trying him off of it in a week or two) and that he will leave the hospital before his due date. And above all, we pray that God will glorify Himself through our situation and in the life of Pierce.

Nana's hand

Special thanks to Liz for the handmade hat and outfit

An awesome comic book quilt (Superman) made by our dear friend, Sarah

Much love,
Lindsay

PS- Nursery painting will be underway tomorrow! Time to get things ready before Pierce comes home.

another way you can help- jewelry sale

2011-06-23T18:54:00.000-04:00

Nik and I have been totally blown away by everyone's generosity and support. This afternoon, my friend Jen mentioned a jewelry sale by a company, The Elegant Owl, that will be donating 10% of it's benefits to our family. Please check out the sale.

Click here to go to their FB site

And this is the album detailing all of their current items and prices

Thanks!

yard sales scheduled

2011-06-23T00:24:00.000-04:00

Some dear friends of ours are planning on having two yard sales, this Saturday and the next and have graciously offered to donate the proceeds to help us out. If you would like to help or have anything you'd like to donate, please contact Michelle at clarkebunch@yahoo.com.

Most importantly, please continue praying for us as we are trusting in God to provide during this time.

Love,
Lindsay

quick morning update

2011-06-22T10:36:00.000-04:00

Pierce's eye exam went well yesterday and yielded great results. It appears that there was no major change between the exam performed last week and yesterdays. The ROP is still stage 2, and it appears to be less aggressive than it looked last week. It was such a relief to hear that the ROP hadn't progressed as rapidly as the doctor expected (she expected it to be at stage 3 yesterday), and that we may be able to avoid laser surgery. We are still going to monitor the ROP closely (weekly eye exams) and of course, there is the possibility that the ROP will progress to the point of needing the laser surgery. Please join us in praying that the ROP will resolve itself quickly and on its own.

Also, we have the unofficial results from the brain scan (unofficial because we have yet to speak with the neurosurgeon)- it appears that P's ventricles are enlarged, but by how much and what this means, we will have to wait and see. At this point, we are unsure of what the course of treatment will be. Please be praying that we can avoid having a shunt placed and that the ventricles would start draining on their own.

Adjusting to the step-down nursery has proven to be quite a challenge for us. Learning a new system along with new nurses, has taken a good bit of time. Please pray for us to have patience, as we really just want to take Pierce home now. I think the last stretch of our hospital stay is going to definitely be one of patience-building. Pierce is up to 3 bottles a day (he has been taking his entire bottles!) and he gets 35 mL's (that's a little over an ounce) with each feeding. He weighed in at 1770 grams last night (3 lbs 14 oz). I can't believe we are nearing the 4lb mark.

God has been so gracious to us, and over the past few days I've found myself reflecting more and more on the past and how God has worked in our lives. He has used so many of you to encourage us, and for that I am so thankful.

Much love,
Lindsay, Nik and Pierce

Pierce is growing up!

2011-06-21T00:55:00.000-04:00

Pierce is one day shy of 10 weeks old. He weighed in at 3lbs 10oz tonight (some of that may be due to fluid retention) and was 15 inches long at last night's length check. It's really quite incredible how quickly he is packing on the pounds.

This morning, during a diaper change, we discovered that lil' man has developed a hernia. Even though I had been warned that most preemie boys develop hernias at some point, it was still scary to discover such a change in appearance. We knew that hernia repair surgery was likely on the "list" of things Pierce would have to do before coming home, so now it is just more of a confirmed task rather than some possibility hanging over our heads. However, hernias are not medical emergencies and the staff will simply monitor it and request a consult with the surgeons sometime next week. And then, just before Pierce comes home, they will perform a simple corrective surgery to fix the hernia.

They were unable to do the cranial ultrasound today as they had a few things that ran late. Pierce will be having one done tomorrow morning, along with his follow-up eye exam. Please be praying that both of these will yield miraculous results. We haven't had much time to update the blog these past few days, but these 2 tests are something that Nik and I have spent much time in prayer over. Please join us in praying that God would heal Pierce's eyes and that laser surgery would not be required. Also, pray that God would heal Pierce's brain and that a permanent shunt would not need to be placed.

On another note, I can't tell you how grateful I am to be at this place tonight. Pierce is resting easy in his big boy crib (That's right, because he was regulating his temperature so well, his nurse moved him into an actual crib tonight. Pictures to follow.), taking one full bottle a day (today and yesterday, he downed his entire 31mL's in 15 minutes flat!), and requiring very little support (still on 21% o2 and 2 liters). Over the past few days, I've spent a lot of time reflecting on how far we've come in the past 10 weeks. It's still so hard for me to think back on the early days- there's still so much pain, grief and fear that arises in me when I think back. But I've started to let my mind go back to that place, not wanting to forget the many things God has done in Pierce's life.

Thank you all for your continued prayers. So many of you have sent money, notes/cards and even gifts for Pierce. I'm hoping to get some pictures of him with his many outfits/hats that so many of you have sent. Maybe one day we can have a fashion show in pictures on the blog?!

We will update tomorrow after we know the results of the tests.

Love,
Lindsay

Moving on up this Father's Day

2011-06-19T19:38:00.000-04:00

It's hard to believe that I am a father today. I am still a little dazed from everything that has happened over the last ten weeks. Nevertheless, I am grateful to God that by His shear grace He has brought Pierce this far and it looks like he will have a chance to live life barring anything unforeseen. But really, that is the prognosis for everyone on the planet, so he is doing real well as far as I'm concerned.

We have been busy lately and will have more time this week to give more frequent update, but know that Pierce is doing well. Pierce did move to the progressive care unit on Friday morning. This is a step-down nursery that prepares the babies for going home. Pierce has done well there and has completely downed two full bottles since he has been there. To graduate, the babies have to take eight bottles a day. Pierce is only attempting take one a day right now and then he will move up to two, then three, etc. To take a full bottle at his stage is really good and if Pierce continues to do well he could possibly be home in five weeks. Today Pierce made another big step up; he is no longer in the isolate but has moved to a bassinet. Pierce has been overheating in his plastic womb, so it was time to move out.

We will take and posts some pics of Pierce's new home and bed soon. In the meantime, please continue to pray for Pierce's eyes. Pray that the ROP will stabilize and reverse itself. I have been praying that at the next eye exam that the ROP will be completely gone. Also, he is having another ultrasound on his brain tomorrow. Pray that the ventricles have stabilized and that they will be able to continue without having to tap his VAD. If tomorrow's ultrasound looks good, Pierce's chances of not needing a shunt will be good.

We love and thank you all for you support and prayers in this.

Grace and peace,

Nik, Lindsay, and Pierce

Graduation day tomorrow

2011-06-17T00:36:00.000-04:00

We never thought this day would come... it's time to say goodbye to this bedspace in the NICU

That's right- our little boy is moving out of the NICU and into the step-down nursery tomorrow!! And even though it is scary to change our routine (and leave our wonderful nurses behind), we are SO thrilled that he's that much closer to going home. There are still a lot of things that P needs to accomplish before he can come home to us, but going to NPCN is a BIG step in the right direction.

Here's where we are at tonight:
P is 65 days old. He weighs 3 lbs 7 oz and is around 15 inches long (that was his length on last Sunday's length check). P is still on the nasal cannula at 21% o2 and 2 liters. There are talks of moving him to 1 liter in a day or so. He has been IV free for almost 3 weeks now. And his hemoglobin is trending upwards (answer to prayers from last night!), so it's looking like lil' man won't need a transfusion!

God has been SO good to us along the way. Today I found myself reflecting on the many times God has intervened and performed miracles to save Pierce's life. Medically speaking, our son should not be here. I don't ever want to take for granted God's grace and every night I pray over Pierce that he would never know a day apart from Christ. I get so excited when I think about reading him stories from the Bible about how God saved those He loved. And then what really excites me, is how I will be able to close the Bible and tell my sweet son the story of how God saved him.I want to thank each of you for your continued prayers. God has heard them and He is the one who has brought us to this point. Please continue to pray for us as Pierce makes his big move tomorrow.

Here's how you can pray:
Pray for our move tomorrow. That God would place equally wonderful nurses and doctors in our lives to care for our little guy. Pray that his ROP would stabilize and begin to reverse itself and that no laser surgery would be required. Pray that his brain bleed would cause no swelling of the ventricles and that the brain scan on Monday would confirm that Pierce does not need a permanent shunt. And pray that Pierce would be DONE with surgeries and the NICU for good. I know that these micropreemies like to throw you curve balls, but tonight I am asking God to grant Pierce an easier course than expected.

Here are some pics we shot today:

We've been spending lots of time snuggling our little guy. He's much easier to hold these days. Sometimes I wonder if we'll ever put him down once he comes home?!

P loved taking a bubble bath tonight. I'm not sure why this picture makes him look bald, there must've been a glare

P was passed out after bathtime tonight! I couldn't resist squeezing those cheeks!

If all goes well, Pierce could be coming home in 5-7 weeks! His due date was August 4th, and the drs. are hoping he will be able to come home around that time. I know it still seems like a while and we still have some hurdles to clear, but I have SO much to do to get our house ready for P. The nursery isn't even cleared out. Looks like we better get to work on that because Pierce is moving faster than anyone ever expected.

Going to bed tonight with a grateful heart.

Love,
Lindsay

eye exam results

2011-06-15T22:48:00.000-04:00

Pierce is 64 days old and is weighing in at 1528 grams (3lbs 6 oz). He is growing like a weed!!! I can't tell you how thrilled I am that he is now starting to fill out his preemie outfits. And pretty soon, he will likely be moving from his heated condo (aka incubator) to a big boy bed (bassinet).

We were finally able to get Pierce's eye exam results and it appears that his ROP has progressed. It is now at a stage 2 in both eyes, which is still considered mild. However, his exam was concerning to the eye dr. since it seems that his ROP is progressing very fast. At this point, the ROP could do one of three things: 1)stabilize and not progress beyond this point, 2) begin to slow in progression or 3) continue to progress as rapidly as it has and thus require laser surgery soon. We, of course, are praying that next weeks eye exam (scheduled for next Tuesday), will not reveal any further progression and that lil' man can avoid eye surgery. We know that our God can, if He desires, supernaturally heal Pierce's eyes. Please join us in praying for a miraculous and total healing in his eyes and that surgery will not be required.

Also, be praying for his upcoming brain scan (next Monday). This will be the true test to see if Pierce will require a permanent shunt. We are so praying and hoping that the ventricles will remain stable in size and that Pierce will not require a shunt.

And one last thing to add to the list- pray for Pierce's body to kick in and to start making red blood cells on it's own. Tomorrow morning they will be checking his hemoglobin level and deciding on whether or not to transfuse.

Pray also for Nik and I. Some days are easier than others. We have been SO grateful that God has granted us more quiet days and that Pierce is doing so well. However, it's hard to reflect on the many bad days we have had and not worry about the possibility of having more bad days ahead. Please pray that God continues to grant us peace as we walk this journey. As always, we are praying that our lives as well as Pierce's, will reflect Christ and demonstrate our total dependence on Him.

Much love,
Lindsay

week 9 update

2011-06-14T20:18:00.000-04:00

Today, Pierce is 9 weeks old. Time seems to be passing by so quickly and for that, I am grateful.

By God's grace, Pierce is still very stable and doing so well. They are still talking about moving him to the progressive care nursery soon (in about a week). He is currently on 21% o2 and 3 liters, although they're all fairly confident that he can do 2 liters just fine.

Pierce got a second try at the bottle yesterday and was simply not interested. He only took 3 mL's and brady'd (aka "made his heart pause and turned really blue") 3 times. BUT today he was much more up for the task. He took 11 mL's (that's almost half of his full feeding) and only had one brady at the very end. Needless to say, we are very proud of our little boy! The faster he can get the hang of this suck/swallow/breathe thing, the faster he can go home.

Also, some VERY exciting news: The neurosurgeon reviewed Pierce's brain scan from Monday and decided to stop tapping his VAD shunt. He said he is still leaning towards Pierce needing a shunt down the road, but there's a very good chance he may not! (I think the neurosurgeon simply doesn't want to speak too soon, because the other drs. and nurse practioners are saying that he likely won't need one!). This is WONDERFUL news as this has been one of my biggest prayers- that Pierce won't need a permanent shunt. Will you please join us in praying that Pierce's ventricles will remain stable in size and that next Monday's brain scan will show that they are draining properly?

In addition to the above, here are some other things you can be praying for: pray that God will grant us wisdom on work/finances- Lindsay will likely be unable to work in the Fall and if she does, it will only be part-time. Nik is hoping to finish out his last 2 semesters of school, and will likely be unable to work full-time during this time. We are trusting that God is going to provide for all of our needs and we have already been so overwhelmed by all of the support we have received thus far. Please know that we are seeking God as to how to best use the money we have received and to glorify Him by being good stewards of it. Also, pray for Pierce's eye exam, which will happen tomorrow. It will tell us a lot as to how the ROP is progressing and whether or not surgery will be required. And be praying for Pierce's hemoglobin level, which is pretty low at this point. Pray that his body will kick-in and take over producing enough red blood cells to meet his needs. We are hoping to avoid a transfusion, but would rather be transfused before Pierce becomes symptomatic if needed. Pray that God gives Dr.Jones wisdom on how to treat this. And one last thing- pray for Pierce's bowels as they will be introducing sodium chloride and protein into his diet this week. Pray for no infection and that Pierce will tolerate the changes as well as he has in the past. Have I mentioned how much your prayers are working? Pierce has had NO issues thus far, in the digestion department. We are so, so grateful to God for that!

Thank you all for your continued support.

Love,
Lindsay, Nik and Pierce

birthdays, bottles and bradys

2011-06-13T00:57:00.000-04:00

Today is Pierce's 2 month birthday (well technically it was yesterday since I'm so late posting this) and boy did he have a good one!

Tonight, when we weighed Pierce, he weighed in at 3lbs even (1365 grams)! None of us trusted the initial reading on the bed so we ended up weighing him on 3 different scales just to verify! That makes him more than double his birth weight (670 grams). And he was 15 inches long, a full 3 inches longer than he was at birth. It's so incredible to see Pierce growing as fast as he is. Some days, as I watch Pierce develop and grow, I feel as if he's starring in the Discovery Health "In the Womb" documentary. It's as if I have a front-row seat to watch as God literally knits Pierce together outside of my womb. Incredible beyond words!

The biggest event of the day was when Pierce was able to try out the bottle for the first time! Nik was brave and decided to take the plunge and give Pierce his first go at the bottle. Of course Laura (his nurse) assisted. Initially, Pierce was a little hesitant. Almost as if he was contemplating this new thing that was in his mouth. I wonder if he thought it was his long-time companion the vent making another return? However, once he tasted a few drops of milk, he went to town sucking. Apparently, as we learned the hard way, preemies have a difficult time managing to suck/swallow/breathe at the same time. Pierce did well for about a minute and then he decided that breathing was simply too much work. His heart took a little "pause" from beating, as Laura so gently described. Needless to say, he turned blue, made Mommy's heart stop, and scared Daddy real good. Nice, huh?! But after we made it past his initial brady, Pierce took to the bottle like a champ! He chugged along for a full 30 minutes (they only let him try for 30 minutes a day because anything past that time period would mean he's burning more calories than he's taking in). After he was done, Pierce was exhausted. In fact, as Nik was burping him, he was literally passed out and drooling! I think he was happy. :)

So today was a good day, one of our best. We are so thankful to God for Pierce's life and his health.

Thank you for your continued prayers!

Love,
Lindsay

play time

2011-06-11T21:20:00.001-04:00

By God's grace, we have no new issues on the table at this time. Pierce is being referred to as a "feeder" and a "grower" in the NICU since that's literally all he needs to do at this point. We are not taking one second forgranted and are loving our "play" time with Pierce.

Here are some pictures from our recent activities.

Daddy got to bathe Pierce for the first time last night. As you can see, he wasn't thrilled.

That's ok, because after he was clean, Laura stuck the suction tubing in his bath to create fun bubbles! Pierce REALLY enjoyed his first jacuzzi-style bubble bath!

After he was dressed, he was finally able to sneak some snuggle time with one of his favorite nurses, Laura.

And he, of course, reconnected with Daddy. We missed Nik while he was gone last week! I honestly think Pierce is also glad because now Mommy and Nana can't dress him up and put girly pink lotion all over him (he's happy to have the extra testosterone around!)

So cozy on Daddy's chest.

Thank you for your prayers and support. Please continue praying for Pierce to grow strong and healthy. Also pray for his upcoming eye exam. The one this week will shed a lot of light (no pun intended) into how fast P's ROP is progressing.

Love,
Lindsay

our little boy is growing up so fast

2011-06-10T01:13:00.000-04:00

Stats: Pierce is 58 days, 5 hours, 26 minutes old
and weighs 2 lbs 9 oz

Go back, 2 weeks ago- Pierce was on the vent, I was beginning to wonder if he'd ever get off and thinking that even if he did, there was no way we'd ever be leaving the hospital near his due date (Aug.4th). Ok, flash forward to tonight- Pierce is off the vent, on 3 liters, and doing well. He has had no major issues (in fact, not even a minor one) in 2 weeks. He's now regulating his temperature fairly well and is able to wear clothes! (Although I don't think he particularly likes mommy dressing him up, but I doubt that will ever change.) It appears that he has rounded a corner and is not looking back.

Pierce is progressing so rapidly that tonight his Nurse Practicioner took me on a tour of the step-down nursery. That's right folks, I said it- the step-down nursery! The step-down (or progressive care nursery) is for the low-maintenance babies who just need to feed/grow before leaving the hospital. We never thought our child would be considered "low maintenance." In NPCN, Pierce will be given a new list of tasks. You see, up until this point, Pierce's main goal in life has been to keep breathing (and for the first 7 weeks, a machine did this for him!) and to keep his sat's high. When he moves to NPCN, he will not only do those "basics," but he will also have to regulate his own body temperature (he will move out of his nifty plastic womb and into a regular crib), learn to eat from a bottle, pass a car seat test and much, much more. Needless to say, this is a big step for lil' man. Nik and I are shocked at how fast he is progressing. I think he is in a hurry to get home. Or maybe he just wants to be like the baby on Grey's Anatomy who got out of the NICU 5 weeks early (insert sarcasm).

Since Pierce is in such a hurry, I decided it's about time to resume our preparation for his arrival. Basically, I'm picking up where I left off. 8 weeks ago, our lives came to a screaching halt. And at 23 weeks pregnant, I simply did not have much done in the way of preparation. After all, we all assumed he'd be born in August, not April. So today my mom and I started shopping for his nursery. Plans are being made. Things are being bought. Clothes washed. To be honest, it has been really hard to resume to dreaming about the future. It's dangerous to dream. This experience has demonstrated how quickly our dreams can be shattered. Call me pessimistic, but it's the reality in which I'm living.

But I'm trusting in this tonight: God has been and is so good. He has sustained us. He has sustained Pierce. And He has brought Pierce to this wonderful place tonight. He will continue working in our lives. And I know, I just know, that He has big plans for our son.

Thank you for praying for us. Please continue to pray as we look towards the future with cautious optimism.

Love,
Lindsay

PS- The talks about moving Pierce to NPCN are circulating, but he will more than likely stay in the NICU another week before they consider moving him.

Oh Pierce, you always have to be different

2011-06-08T13:44:00.000-04:00

I just got a phone call from the eye dr's nurse. She prefaced the results by saying, "His eye exam was a little unusual." To which I responded by thinking, "Yeah, tell me something I don't know." It seems our guy is never following the "rules" or pattern for something. I wonder what he will be like when he's 16?!

Anyways, here are the results: Pierce does have ROP. Fortunately it is only a stage 1 in his left eye and a stage 1/2 (2 was questionable) in his right eye. Fortunately they are in zone 2. What that means, for all you who are like me and don't know anything about this disease, is that Pierce will need to be monitored closely (weekly eye exams) to see if/how fast his ROP progresses. Stages 1-3 typically correct themselves on their own without laser surgery. The unusual factor is that most babies don't show signs of ROP upon the first exam. Since it is early and Pierce has already developed ROP, they are putting him in the high-risk category (he seems to fall in this category for EVERYTHING) for developing stage 3/4 at some point. At this point, we will just have to wait and see how this plays out. And if there's one thing I've learned, it's that we simply cannot predict how Pierce will do (he's got quite the reputation for throwing curve balls). Please be praying that his ROP will not progress to the point of needing surgery and that his eyes will correct themselves.

On a positive note, Pierce tolerated the eye exam wonderfully. His oxygen was turned up during the procedure (precautionary), but he was able to be lowered to 21% o2 right after the exam. Still going strong on the cannula! Praising God for the healing he has already granted Pierce and trusting in Him to heal his eyes completely.

Love,
Lindsay

P's first eye exam

2011-06-08T10:54:00.000-04:00

Please say a quick prayer for Pierce today. He is having his first eye exam this morning. Pray that there are no major concerns. Also pray that it will not stress him out and set him back. In addition to the eye exam, he's also having his VAD shunt tapped (happens every 3-4 days). Pray for peace and comfort for our little guy as I know he will most likely be uncomfortable throughout the procedures. Will update soon when we know more.

8 week report

2011-06-07T18:15:00.001-04:00

Pierce is 8 weeks old today! Hard to believe. At times it feels like this journey has lasted forever, other times it feels like it's just begun. We have had so many ups and downs throughout our NICU stay, but we feel so fortunate to have our little guy with us.

Today I was reminded of the confusing mix of emotions that exists in the NICU world. When I rounded the corner today, I immediately burst into tears because Pierce's neighbor of one month was no longer there. I knew what that meant. Immediately my heart sank and pain rushed in. I knew that our friends had lost their child. My heart has not left that heavy place since learning the news early this morning. And while Pierce was having a great day (so good in fact, they weaned him down to 4 liters at 21% o2) still I found it hard to celebrate.I find it nearly impossible to just stay in the moment. I find my mind wandering. Death is never far off in the NICU and sometimes I just have to disconnect because I simply can't bear to live with that cold, harsh reality. But I am learning to trust God even when everything seems so dark and scary. Today I am trusting that God is going to protect Pierce. I am praying with all my might that Pierce will grow into a strong man one day and that he will continually be able to proclaim the Gospel to those around him. Will you join me in praying this?

On a lighter note, I was able to hold little man for quite a while today. Pierce has 2 new found loves: his pacifier and the ability to be swaddled. Give the boy both of these things at once, and you have one happy baby!

Here we are with Lindsay, Pierce's primary nurse (she's nothing short of amazing!).

What we did this afternoon

Will post later tonight- Pierce is getting a real tub bath! Pictures will follow soon.

Love,
Lindsay

the start of a new week

2011-06-05T23:27:00.000-04:00

Pierce is doing so well! We have been so, so thankful that this past week was so quiet and uneventful. Well, now that I think back, it was rather eventful- coming off the vent, off the CPAP and staying on the cannula- but at least the events were all GOOD! He now weighs 2lbs 10 oz and is 54 days old. He's growing up so fast! In fact, he's such a big boy, they increased his feeds from 21mL's to 24mL's every 3 hrs. He's still on the nasal cannula, on 21% o2 and 6 liters. They're hoping to start weaning the liters tomorrow since little man has been tolerating the cannula so well. The only issue right now is that Pierce's heart rate has been elevated for the past few days. The drs. are thinking that this is probably just a result of the steroids he's on for lung development. Fortunately they're weaning the steroids this week so that should help his heart rate to go down.

Last night, Pierce took his first bath. Well it was more like a glorified wipe down, but we'll call it a bath. Unfortunately we didn't get any good shots because Pierce was mad.

And here is a quick video we shot tonight. The picture/sound quality isn't the best (thanks iphone!), but if you turn your volume all the way up, you can hear P crying. He can get a LOT louder, but he looked pretty peaceful tonight so this was all I could catch.

Here is how you can be praying for us tonight:
1. Pray that Pierce will continue to do well and that each day he will grow stronger and stronger.
2. Pray as Nik is headed to Atlanta tomorrow morning for a 5-day intensive seminary class at the RTS-Atlanta campus. Pray that Pierce has a good week with no major issues so that Nik can complete this class and be one step closer to graduation.
3. Pray for continued endurance and strength as we walk through this long journey (some days I swear it feels like it will never end!)
4. Pray that Pierce will tolerate the changes that are coming this week (wean in steroids, wean in o2 liters, and an increase in calories-more formula)
5. And pray for God's guidance as we figure out finances, work, etc. and where to go from here.

Thank you all for walking this journey with us.

Love,
Lindsay

what a week

2011-06-04T10:54:00.000-04:00

Let me start by saying, thank you, thank you, thank you for all the prayers that have been said on behalf of Pierce. We truly appreciate them and know that God is hearing them and is healing our little boy.

Quick recap: on Monday, Pierce went off the ventilator to CPAP. (We all thought that P would most likely wind back up on the vent at some point since his CPAP record was only 5 hours.) By Thursday night, Pierce was placed on the nasal cannula because he had been on the lowest CPAP setting since coming off on Monday! (Also, his head was starting to look a little funny because it was forming around the cpap mask/hat...not very attractive!) And today, some 5 days after saying goodbye to the vent, Pierce is still on the cannula, chugging along at only 21% o2! He hasn't had an IV since last Saturday, which is wonderful because it means that 1)he simply doesn't need it because he's not requiring any transfusions, TPN, etc and 2)it decreases his chance of infection. This past week has by far, consisted of the best day in Pierce's life! The medical team is shocked at how well our little guy is doing. We have rejoiced every step of the way, not taking one moment for granted and thanking God for the many miracles He has performed.

Because Pierce is only on the cannula, it is so much easier to hold him now. I totally took advantage of that and spent about two hours holding him last night. Here's a shot we snapped during that time:

Check out the cheeks on this kid! And to think, this is before they plan to start formula to fatten him up. Yikes.

Pierce is really starting to take on a little personality and we are discovering so much about our son already.

Here are a few things we've come to learn about Pierce:
1. He loves his tummy!
2. 90% of the time, he sleeps soundly with a quiet, determined spirit
3. the other 10% of the time, the times when he's a) not in his favorite position (tummy) or b)awake, he's generally MAD. And boy, when he's mad... It's hard to believe such a loud cry can come from something SO tiny. I think we will be in serious trouble when he comes home!
4. He has his favorite nurses (Lindsay, Jennifer, Laura, Ashley, Rachel...to name a few), and trust me, he knows if he doesn't have one of his favorites.
5. He is like his dad in more ways than one.
and finally
6. Pierce is definitely not a rule-follower. He does things his own way and loves to keep everyone guessing as to what he will do next.

I hope this gives you a little insight into Pierce's life. We wish that each of you could meet him and get to know him like we do.

How you can pray: Continue to pray for good days, that Pierce will remain healthy and strong. Also pray as they are going to start supplementing his feedings with a special preterm formula to beef him up. So far, Pierce has tolerated his feeds wonderfully and we're praying that this change won't make things any different. Also continue praying for Liam, Pierce's buddy. Liam is following Pierce's lead and defying the odds as well. Pray for continued healing for Liam.

Love to you all.
Lindsay

Strongly Moving Forward

2011-06-03T08:26:00.000-04:00

Just a quick update...Pierce is now on the high-flow nasal cannula. The cannula is the next down from the cpap in breathing support. The next step from here is room air! They weren't going to try the nasal cannula on him until next week, but he was doing so well on the cpap. He did not have one brady (that is where his heart drops) all day yesterday. That is a really good sign. God continues to strengthen and bless Pierce. Thank you for your prayers and support. Please don't stop.

Grace and peace,

Nik, Lindsay, and Pierce

photoshoot.

2011-06-01T19:30:00.000-04:00

Daddy lifting Pierce up during his cares so that we can check his weight

"What's that? A toy for me?"

These pics were taken a couple nights ago, prior to extabation

Pierce with his giraffe blanket (thanks Maddy!). It's supposed to be a small little lovie, but right now, it's a full-sized blanket for P!

Nik's grandmother was able to come meet P.

And finally, here is short video clip of Pierce from a few nights ago. He is saying "Hi" to all of his followers. Thanks for praying for our bud and please continue to do so. Enjoy!

and the baby bird flew!

2011-06-01T00:35:00.000-04:00

A little background on the title of this blog: one of Pierce's doctors came over the other day (before extabation) and told us his philosophy on the situation. He said "sometimes you just have to kick the baby bird out of the nest and let him fly." While I was a little concerned (thinking that many a bird has fallen to the ground that way), I'm pleased to tell you that this is exactly what is happening. Pierce is flying! He was taken off the vent on Monday and hasn't looked back since! P is loving his new found freedom- being able to breathe completely on his own, whenever he wants He has his moments where he holds his breath or forgets to breath, but so far, he's self-recovered every time. We are so proud of our little guy. Today and yesterday have been the 2 best days of his life! It's taken us 7 LONG weeks to get here, so as you can imagine, we are beyond thrilled! Today the NICU was buzzing as everyone discussed our little guy's progress. And on rounds, the doctors had to make sure they had the right kid (they're not used to such an easy, short report for our boy!). Thank you all for your prayers and support.

Also, little Liam is doing a little better tonight. Thank you for joining with us to pray for P's best friend. He is nearing the end of the "critical" window, and things are beginning to slowly look up for him. Please keep this precious family in your prayers as they anticipate a long, tedious recovery process.

Today, I've spent so much time reflecting on God's goodness and mercy. I am flooded with memories of how He has repeatedly sustained Pierce's life throughout these past 7 weeks. And still, as today is one of our best days yet, I'm filled with bittersweet thoughts. Once you've tasted how fragile life truly is, it becomes hard to not dwell on the what if's and why's. I constantly find myself wondering why we still have our son with us, while several of our friends have not been so fortunate. And then there's the "what if's"- like what if he gets _______ or what if ____ happens. But God is gracious. He has reminded me to not be anxious about anything. It hit me today that even if Pierce leaves the NICU with little to no complications (which we are praying fervently for), his life will still be fragile. Because all of our lives are fragile. They're all hanging by a thread. We just fool ourselves into thinking that, when things are good, we have complete control. But really have no control, do we? So tonight I'm praying for faith; asking for a faith that grants me the ability to trust in God, because I know all to well that trusting in God is much easier said than done.

You can also be praying that God will protect Pierce from any sort of infection. At this point, infection would be the biggest thing to set our guy back, so we are praying that he stays clear and that he will grow stronger with each day that passes. Pray specifically for protection against NEC, which is still the biggest risk for our guy.

One last thing- tonight we were able to hear Pierce cry for the first time ever!!! It was a squeaky cry, almost like a puppy makes when it's first born, but oh was it ever music to our ears! We only heard it once, because apparently Pierce is a pretty content baby these days. We tried for a few minutes to make him mad again so that we could hear it once more (aren't we wonderful parents, making our baby cry?!), but nothing worked. Pierce just kept quiet, gazing around his isolette. As soon as his cry grows a bit louder, we will try to snag a video clip to share with you all.

Thanks for praying with us on this journey.

Love,
Lindsay, Nik and Pierce

The little engine that could...

2011-05-30T20:24:00.002-04:00

While he doesn't show it (notice that he's screaming at the top of his lungs), Pierce really was relieved to have the tube out today.

I think I can, I think I can, I think I can... those are the lines that I imagine running through Pierce's little mind right now. And guess what, he IS doing it! He's impressing everyone with how well he's doing. Today has been a good day. A day full of advancements. I wish I could bottle these emotions/feelings and pull them out on the days where we seem to make no progress. But for now, I'm staying in the moment. Encouraging our little boy on and praying that he does not ever have to be reintubated. In addition to coming off the ventilator, we learned today that Pierce's brain scan showed that his ventricles have stabilized in size. This means that the clot is being re-absorbed by his body and that the blockage is correcting itself. For the past week or so, the staff has not been able to draw much fluid off from his VAD shunt, which meant that there wasn't any extra to draw off (that's a very good thing!). Needless to say, we (the staff included) are all growing optimistic that Pierce will fall into the 10% of children with hydrocephalus who do not require a permanent shunt. That would be amazing!! Please continue praying. God is hearing your prayers and answering them. We are so thankful for how He is working Pierce's life today.

Earlier, on twitter I asked you all to also pray for Pierce's best bud- Liam. Liam was born 2 days after Pierce with an abdominal wall/bowel defect. Despite the diagnosis, Liam's parents were assured that most babies recover fine with surgery. Liam has been doing well these past 6 weeks in the NICU and just last week underwent surgery to correct the defect. Plans were made for Liam's parents to take him home within a few weeks. Then today, tragedy struck. Liam developed a serious infection at the surgical site and had to undergo emergency surgery. He is now struggling to recover. His parents are reeling as this was completely unexpected and as you can expect, very heartbreaking. They are looking at a very long road to recovery and at this point know that Liam will most likely be in the NICU for many more months. While our situations are different, my heart breaks for our dear friends. So tonight, I'm asking you to please, please pray for Liam and his parents. Pray that he will recover much faster than doctors expect. And pray for complete healing for Liam.

Love to you all.
Lindsay, Nik and Pierce

cultivating patience

2011-05-29T20:05:00.003-04:00

A sign that one of Pierce's nurses made to encourage him on! Attached to the sign is a nasal cannula, which is the step after CPAP

Ok, so we pulled your leg. The planned extabation was a no-go today. Pierce was ready. We were ready. The staff was ready. And then Pierce changed his mind. His blood gas (how they tell if he's tolerating the vent settings) came back a little too high to extabate. They weren't bad, but they weren't good enough to try CPAP. While we were definitely discouraged, we are reminded that God is sovereign and in control. Every day that goes by, it's almost as if I can feel God cultivating the patience in my soul. It's not something that comes natural to me by any means. But patience is something that surely helps in this life. So, today we are going to trust that God will bring Pierce off the ventilator soon and hopefully we get another chance to try out CPAP tomorrow.

They weren't able to get an IV to give blood, and since it's by no means an emergency today, they decided not to keep sticking him in an attempt to place an IV. Also, they're hoping that Pierce's bone marrow will kick in and begin replacing his red blood cells (this typically happens around the 6-8 week mark in preemies). If this happens, he won't need a transfusion, and that'd be great! While we wait to see how Pierce will respond, please be praying that his hemoglobin will not drop to the point where he will become severely symptomatic.

Thanks for praying with us! We are going to try to snap some new pictures of P tonight.

Much love,
Lindsay, Nik and Pierce

Big things planned for today...

2011-05-29T09:29:00.000-04:00

Pierce is doing well. So well, in fact, that Dr.Herman feels it's time to pull the breathing tube and see how our lil' man flies. We are so excited because the staff today reiterated what we've been thinking when they said they feel like Pierce is just hanging out with a tube he probably doesn't need anymore. Please be praying as they attempt a controlled extabation at some point today.

Last night, Pierce's doctor got rid of/changed a few things. I think this doctor is a little like me in terms of wanting to see some immediate progress (do I need to mention how grateful I was for him?!). Therefore, Pierce's PCVC line, his TPN (IV-nutrition that he no longer needs), and his antibiotics were all taken away. Pierce will solely be feed by breastmilk+fortifier now. It may seem silly, but it makes me so giddy to think that he is starting to only require the things a healthy baby would.It also gives me encouragement that we are making some progress.

Also be praying as they're going to attempt to place an IV in order to give blood (P's hemoglobin has been inching down-a normal preemie thing- and they want to catch it before it becomes an issue). We are really hoping and praying that they can get an IV easily and that he will be able to get his blood today so that he won't become symptomatic (in the past this has set him back).

So needless to say, today is a big day for Pierce. Be praying that he shows us what he can do when he's given the chance and that God grants our little boy the strength/endurance to breathe on his own!

Thank you again for your prayers. We will update later and let you know how things go.

Much love,
Lindsay, Nik and Pierce

saturday morning

2011-05-28T10:13:00.000-04:00

Pierce has had a quiet few days in the NICU so there's not much to report on (yeah!). He seems to be tolerating the fortifier thus far. One way the staff can tell if a baby is tolerating feeds is whether or not they give any of it back (or if any is leftover in the tube). Apparently, most preemies give a lot back thus requiring the staff to stop/start feeds on/off until the baby adjusts. Well we've been told our little guy seems to really enjoy his feeds because he hardly ever gives any of it back. And it's looking as if he may continue that pattern even with the addition of fortifier. For that we are grateful.

Please continue to pray that feedings will go well and that we will have no NEC scares. Also pray that his lungs would continue to heal and grow and that he would be able to be off the ventilator soon. He is currently chugging along on the setting that allows him to do most of the work on his own. Of course every now and then he forgets to breathe, but we think he's probably just distracted by daydreaming about the day he gets to eat real food, who he wants to be when he grows up, and other important things in life. Regardless of what he's dreaming about, we hope that he will come to understand the importance of breathing on his own real soon. We are so, so ready for that tube to be out!

Be sure to follow us on twitter as we will try to update that more often since it's easy to access from our phones in the hospital.

Much love,
Lindsay, Nik and Pierce

Pierce reaches 30 weeks corrected and 2lbs 6oz!

2011-05-26T23:08:00.002-04:00

That's right...Pierce is now 30 weeks corrected age (the 30's are a great mark to be at!) and he gained 2 oz overnight! His nurse didn't believe it, so she weighed him 3 times. It's hard to believe he is almost 1lb. heavier than he was at birth. Have I mentioned how much difference a pound makes?! After I posted that picture last night, I realized how much it made him look like a full-term baby. I think it had something to do with the angle of the camera, because I can ensure you, while he's gained weight, he is still no where near fitting into those adorable preemie clothes you see in the store. In fact, today I picked up a newborn outfit (I think it said up to 7lbs) and was shocked at how BIG it looked. I found myself thinking, "Will our kid ever fit into this?!"

Pierce had another quiet day. He was able to be weaned a tad on the ventilator and is back on the setting that allows him to do some work on his own. We are praying fervently that he will be off soon.

Our biggest prayer is that tomorrow, Pierce will come off of TPN (that's the IV nutrition he's received since birth) and will begin having his milk fortified. This is something that is scary, because until this point, Pierce has only received breastmilk, which is easy to digest. A lot of babies can have trouble digesting the cow's milk fortifier, but like everything in the NICU, it's a risk/benefits game. He needs this to grow and to get stronger. However, we know that NEC is always looming over us and now, more than ever, we will have to be on close guard. Our nutritionist has been AMAZING and is an expert in this area. She has promised to keep a close eye on our little guy and we are all praying that we do not have to deal with NEC at all. Fortunately for us, Pierce has a really strong GI tract (or so we've been told). Nik chalks this up to the fact that he comes from a long line of big eaters (on both sides of the family) and he doesn't seem to be hesitating when it comes to digesting food. Please continue to pray for this. I know it may seem so silly- praying for a baby to properly digest food. But I can't stress enough how important this process is and what a vital role it plays in his recovery/progress.

We will keep you guys posted and let you know how lil' man likes his first milkshake.

Love,
Lindsay

how you can pray

2011-05-25T21:39:00.000-04:00

Pierce was snoozing away today when we went in to visit.

It was, again, a quiet day in the NICU. I am so grateful for that, although it can be frustrating to feel like you made absolutely no progress in a day. But, we will take little to no progress over backsliding. Pierce is still stable, and still on the same vent settings. We continue to pray that he will be able to come off by Friday. We are also praying as Pierce will likely start having "milkshakes" soon. Basically, he will have a fortifier added to the breastmilk to add in the extra nutrients that his little body would have received had he been born full-term. Please pray that this goes well as many babies can have a hard time digesting cow's milk products. Also continue to pray for protection against the devastating disease NEC, which is a constant threat to Pierce. Other than those changes, everything else is the same. His temporary shunt is working wonderfully and they have been able to go to tapping it every other day as opposed to every day. Hopefully, after the follow-up brain scan on Monday, they can go to every three days. The less they have to poke him, the better!

In addition to the requests for Pierce, you can pray for us. Pray for wisdom and guidance as we try to sort through our options for work, school and finances. Everything in our lives has literally been on hold since Pierce's unexpected arrival, and it is only now, some 6 weeks later, that we are beginning to pick up where we left off and try to figure out some sort of routine. It can be hard, because if there's anything this experience has shown us, it's that you cannot plan too far ahead! There are still so many unknowns about Pierce's situation, but we are trusting that God will grant us wisdom and discernment to make the best choices for our family.

Thank you all for your continued support and prayers.

Love,
Lindsay

update

2011-05-25T09:22:00.000-04:00

Still not much to report, which is so, so good! Pierce has been so stable the last few days. He's up to 12mL's at every feed and now weighs 2lbs 4oz! It's so encouraging to see him grow. He's still on the ventilator, so we are continuing to pray that God will miraculously intervene and that he will be off by Friday.

Please continue to pray for us as we walk this journey. The daily routine can become quite draining and we are definitely feeling the marathon-aspect of the NICU life. But we trust that God is still working and that with each day that passes, Pierce is growing stronger and stronger.

Much love,
Lindsay, Nik and Pierce

no news is good news

2011-05-24T00:52:00.001-04:00

Not much to update on tonight. Pierce had a pretty quiet day and only had one slight change on the ventilator (unfortunately it was a step back, but nothing too major). My interview with the radio station went well and we should know soon when it will air. Other than that, it was a pretty quiet day and for that we are VERY thankful. Please continue that God will perform a miracle and that Pierce will be off of the ventilator by Friday.

Pierce did hit 1000gm's or 1kilo tonight! A pretty big milestone in the NICU. Here's our proof that he's still growing like a weed.

Much love,
Lindsay, Nik and Pierce

Sunday report

2011-05-22T19:31:00.000-04:00

Pierce has had a relatively quiet day. Nothing new to report, which is definitely a good thing! He has been weaned a smidge on the vent and we are hoping that the weaning will continue throughout the night. His swelling has gone down and he's looking much, much better. We are continuing to pray that he will end his long-term relationship with the ventilator by Friday. I had a long talk with Pierce today and told him it's time to cut the ties (or remove the tube, in other words). I tried to explain to him that if his tube is out, he can then cry and get all the attention he wants/needs without dropping his sats. He merely raised his eyebrows at me. I guess we already know that P has a mind of his own so it was probably useless for me to even suggest a plan. :)

Also, Pierce is now up to 10 mL's at each feeding! That's right- we are now in the double digits! And Pierce is a happy boy. We're praying that feedings continue to go well and that most importantly, he does not develop the dreaded bowel infection, NEC.

Also, please be praying for me as I will be interviewing with a local radio station tomorrow and sharing our story. Pray that the Gospel will shine forth and that those who hear our story will be brought closer to Christ as a result. We will keep you posted on when it will air as well as details for those of you who are out of town and unable to listen to the live broadcast.

Thank you for praying alongside of us. We will continue to update as things change.

Much love,
Lindsay

nighttime update

2011-05-21T23:54:00.000-04:00

Well, we have taken small steps all day. Tiny steps. Micropreemie steps. But no matter how small, we are grateful for the steps forward. Pierce has been stable today and has been able to be weaned on the ventilator. He is swollen, which is more than likely a reaction to all the fluids/meds/blood he has received over the past few days. He is up to 2lbs 3 oz! Although some of that is likely the fluid he is retaining. But nonetheless, he is gaining weight and growing! Please keep praying that he will continue moving forward and that he will be able to be weaned off of the ventilator by the end of the week.

Pierce was resting easy tonight when we left. Pray for a quiet night. Pray that his swelling would go down. Pray for his nurse, Jennifer. And pray that tomorrow he will take leaps and bounds forward.

Much love,
Lindsay

Here is a picture that his nurse Lindsay was able to snap today. I wonder where he got the hat from?!

Death is not dying, and other thoughts for today

2011-05-21T13:36:00.000-04:00

Today has been a good day. Pierce is doing well and seems to be back on track. He's been able to be weaned down some on the ventilator and our hope is that he will be able to continue this trend. Nik and I started praying specifically that Pierce will be off the ventilator by next Friday. Will you join us in doing this?

Today as we rejoiced of our son's progress, we also mourned alongside friends. This morning we attended a memorial service for a precious baby boy that was born at the same gestational age as Pierce. This sweet boy was across from Pierce in the NICU for 9 days before going home to be with our Lord. The bond we feel with his parents is indescribable. I don't know if my heart has ever been so broken for someone else. We know their pain. We know the trauma that you experience when your child is born before they are considered "viable." And we know the feeling of holding your child and knowing it will more than likely be the last time you'll see them alive on this side of heaven. And yet, in all of that, we do not completely know their grief because God has graciously chosen to keep Pierce with us.

But today we not only mourned with this family. We rejoiced. We rejoiced because death is not the end for us. Death is not the end for their child. Every day that we walk the halls of the NICU, we are confronted with death. We are forced to stare death in its face. We are forced to confront our deepest fears. Have you ever realized how much we all try to avoid dealing with death? Or how scared we are to die? Death is not something to be discussed routinely at the dinner table, in casual conversation. It isn't something we generally anticipate with great joy. And certainly the death of a child, your child, is not something one can bear to think on. And yet, in Christ, death is gain. Death is glorious, because it presents an end to the suffering, sickness and sin and offers us complete and perfect union with God. When we are Gospel-minded, we suddenly become antithetical to the world. Our perceptions of death begin to change. Death no longer looks as scary, because death brings us Christ. Christ conquered death. And Christ is more than enough for us.

Throughout this experience, I've found myself often singing one of my favorite John Mark McMillan songs: "Death in His grave." I love how this song is chocked full of theology and really paints a picture of what was accomplished on the Cross. It reminds me that while death is never far off from any of our lives, death is not to be feared. I thought I'd share it with all of you. Here is a link to a commentary by the artist for those of you who are interested :)

Trusting in Christ today as we ask Him for continued healing for Pierce.

Love,
Lindsay

There is a Peace that Surpasses all Understanding

2011-05-21T00:33:00.002-04:00

"Rejoice in the Lord always; again I will say, Rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."
(Philippians 4:4-7)

There are many ideas, philosophies, and "things" that offer peace. When the savings account is looking good, we have peace. When we get a clean bill of health from the doctor, we have peace. When we feel like we are accomplishing our life's purpose, we have peace. And those are all fine and well, but all these things offer us a peace that is understandable. On the other hand, when the doctor tells you there is a significant risk that the right side of your son's heart could eventually wear out and kill him and yet despite you're fear and anguish, you are overwhelmed with a sense of joy, that is a peace that surpasses understanding.

And that is the news that we got today. We knew that we weren't completely out of the woods, but this is the first time that we had ever heard that there is a possibility that Pierce's heart could shut down. In micropreemies, especially 23 weekers, their lungs are very immature and the right side of the heart has to work a lot harder to keep blood flowing to them. The right side of the heart is only supposed to "lift light things," we were told. And when it has to work so hard to push blood to Pierce's lungs it can wear out, thus causing heart failure. And as we were told, there is simply nothing they can really do to prevent right side failure of the heart.

When I was told this, for some reason I wasn't scared. As I have reflected on the news, there have been many emotions flaring. Of course, if I dwell on this threat I would soon go crazy. And one thing this experience is doing is teaching us to not be anxious. Anxiety will suffocate you. I have also been angry and frustrated. Sometimes it is hard to get an accurate answer about what is going on. Three different people will tell us three different things. Then we will research stuff (journals/books, not Google!) and get a different take. On top of that, we have witnessed miscommunications between the different shifts. It makes it hard to comprehend what's going on when you can't get a unified answer and the team coming in doesn't have an exact knowledge of what went on with Pierce three days before. However, we know that the medical team at Levine is one of the top in the country and that God is sovereign despite any human errors.

However, most of my reflections have produced peace. God didn't let Pierce's heart stop when it was pumping for 72 hours+ with a potassium level of 9, eventually reaching a level of 10 (miracle!), and I just don't believe that He is going to let him die now. James 1:17 is constantly brought to mind. God has consistently answered our prayers to sustain Pierce, and we are trusting in His character. As James 1 reminds us, God's character does not change over time.In light of this, we really do have a peace that surpasses all understanding. We are not lying and it is not denial. It is the grace of the living God at work in us.

To be clear: there are no signs of Pierce's heart failing right now and it is not guaranteed by any means that it will, but there is certainly a significant risk. It is just one more thing to be concerned about (concerned, not anxious :) ).

Please continue to pray for Pierce. The immediate requests are for his lungs and heart. But really we need prayer for everything else we have discussed over the past few weeks too. Pierce appears to be getting a tad better. He definitely had a better day today than yesterday, and for that we praise God.

We appreciate all your prayers and support. May you be blessed in this as much as we are.

Love,

Nik, Lindsay, and Pierce

another set back

2011-05-20T00:36:00.000-04:00

After a rough couple of days, it appears that Pierce is more than likely fighting some type of infection. The suspicion is that he is dealing with pneumonia, although this is really just a guess. To be safe, they started him on two different types of antibiotics tonight. To make a very long and complicated story short, they are trying multiple things right now (steroids, antibiotics, methadone-for the withdrawals, sedation, blood transfusion) to get our guy back on the road to recovery. Please be praying for him tonight as he is definitely not feeling well. Pray that the medicine kicks in and helps him fight off any infection that may be lurking around in his body. Pray that he will be able to be weaned down on the ventilator soon and that we will begin to see great progress in terms of his recovery. Pray also for the build-up of fluid in his brain. They've been able to control it by tapping his shunt every day, but we know there is a high probability that he will need the permanent shunt placed in a few months. We are praying for God to miraculously heal Pierce's brain and that the clot will resolve itself without requiring the full shunt.

These past few days have been rough, as you can imagine. I wish I could write that I've held fast with peace and confidence, but that would be a lie. So often my heart drifts and I find myself trying (with great frustration) to gain some control in this situation. So tonight I am resting in Jesus and praising Him that despite my unbelief (which at times can be so great), He is still working. I am praising Him that what He does in this situation is not a result of my faith (or lack of), but rather His will. And I am praying to Him to bring us hope and encouragement as we struggle through these dark times.

Christ is All,
Lindsay, Nik and Pierce

three steps backwards, one step forward, two steps back again

2011-05-19T17:55:00.000-04:00

The title of this blog pretty much describes the daily NICU life. Sometimes there are more steps forward, and other times, like today, there are steps backwards. Pierce is having a slightly better day today. The doctors were able to sedate him and hopefully help with any pain med withdrawals. They also discovered that his hemoglobin was low (another common problem with preemies) so they are giving him a blood transfusion today. Because of the blood transfusion, they stopped his feeds for the day, but will likely resume tomorrow at 8mL's every 3 hours.

The biggest concern is still Pierce's lungs. He is still receiving steroids to help with the inflammation and they are hoping that the steroids will kick in over the next day or so and that Pierce's lungs will start to improve (they had tried to wean his steroid dosage over the weekend, which resulted in lots of inflammation).

Please pray for complete healing and that Pierce will progress faster than expected. Pray for Nik and I as we can so often begin to feel overwhelmed and discouraged, especially on days like today and yesterday where we feel like all we are doing is moving backwards in terms of progress.

Tonight we are holding on to the hope that Pierce's life is in Christ's hands and that He has brought Pierce this far and that He will carry him through. Please join us in praying for healing.

Much love,
Lindsay, Nik and Pierce

wednesday afternoon update

2011-05-18T16:48:00.001-04:00

It appears Pierce has taken even more steps backwards in terms of ventilator settings today. The guess right now is that this is a result a two-fold problem: 1) they weaned on his steroids yesterday which has resulted in more inflammation and 2)the vent tube was too high and wasn't inflating the lungs properly causing a portion of his right lung to collapse. In addition, they are guessing that Pierce is experiencing some withdrawal from the pain medicine (Fentanyl) that he was on for so long. He doesn't seem to be experiencing bad withdrawals, he just seems more irritable than normal. Just to be safe, they are going to start him on methadone to help ease any withdrawal symptoms. Right now the goal is to get the closed portion of his right lung to open back up, which will hopefully help him be able to come down on the vent settings. I'm sure those of you who follow this blog have been able to get some sense of the series of ups and downs that the NICU life brings. And it appears that today we are experiencing one of those "downs," although we are widely aware that it could be much, much worse.

Please pray for us today. Pray that Pierce's lung will fully inflate and that he will be able to be weaned off the vent. Pray that he won't experience any serious withdrawal from the pain medicine. And pray that Nik and I will be reminded of God's sovereignty admist the chaos.

Much love,
Lindsay, Nik and Pierce

how you can pray for us today

2011-05-18T11:04:00.000-04:00

Pierce had a little bit of a rough night last night. Long story short, he kept dropping his sat's and he had a few bradys. They discovered his blood gases were not great, so they needed to make some changes on the ventilator. Fortunately, after constant tweaking of the vent, P seems to be doing much better. While I am so thankful that this was the extent of the problems last night (it could be much, much worse), it is also frustrating because it seems we've taken 3 steps backwards on the vent. We know this is to be expected and it's par for the course, it's just frustrating when it actually does happen. Please pray for Pierce's lungs, which are pretty hazy according to this mornings chest x-ray. Pray that they will clear and that he will be able to be weaned off the ventilator sometime soon. Also continue praying that Pierce will remain free from infection. His feeds are still going well and he's moving up to 8mL's tonight if everything goes well.

Have a great day,
Lindsay, Nik and Pierce

Five weeks!

2011-05-17T20:37:00.000-04:00

It's hard to believe that our little guy is 5 weeks old today. Every day he is growing stronger. It has been miraculous to see God knitting him together before our very eyes. I had high hopes of snapping a good 5 week picture tonight, but unfortunately the NICU is closed down while they admit 3 new babies. I'll try to get a few good ones tomorrow and post them to the blog for you guys to see how well P is looking these days.

Fortunately, we have nothing new to report today. Pierce is still hanging tough, with no new changes in his condition. He is still on the ventilator but there are talks of extabating soon. We are hoping that sometime this week, he will be able to come off and give CPAP another try. The doctors are still tapping his shunt daily and are drawing off a significant amount of fluid (this is good as it means the shunt is doing it's job). We are praying that the clot in Pierce's brain (the clot is what's causing the spinal fluid not to drain, thus causing the need for a shunt) will reabsorb and that Pierce will fall into the 10% of children who do not require a permanent shunt later on.

Thank you all for your continued prayers and support.

Much love,
Lindsay, Nik and Pierce