We just got back from meeting with Dr. Engstrom. He went over the first and second brain scans with us. And although the bleeding in Pierce's brain is a grade 3 on one side and a dreaded grade 4 on the other, it is not quite as bad as it sounds. In Grade 4 bleeding there is somewhat of a sliding scale. Dr. Engstrom used a flu analogy. There are flus where you get a little sick and need to rest a day or two and then there are flus that put you in the hospital. Pierce's grade 4 is on the lower end of the spectrum and there is a 98% that there will be no more bleeding. The blood has only reached a small portion of the tissue on the right side. And though the blood has reached some of the area, it will take a while to destroy it, if it even does at all. The bleeding could recede before it has time to do any damage. But even if the area is destroyed (we are going to pray that it is not) Pierce's brain is so immature that as it develops it can compensate for the loss of mass.
So, overall, for where we are at, Pierce is doing well. For the last couple of days I have been reading Psalm 91 to Pierce. Here are some of the major sections of the Psalm that have been a blessing to us:
Because you have made the LORD your dwelling place-- the Most High, who is my refuge--no evil shall be allowed to befall you, no plague come near your tent.
(vv. 9-10)
"Because he holds fast to me in love, I will deliver him; I will protect him, because he knows my name. When he calls to me, I will answer him; I will be with him in trouble; I will rescue him and honor him. 16 With long life I will satisfy him and show him my salvation."
(vv. 14-16)
God is faithful. And again, all of our confidence is found in Christ. We are trusting God for Pierce's recovery. We cannot think you enough for all the prayers and support. A dear friend of ours Nicole Chitty, with the help of the RTS Women's Cabinet has set up a fundraising website for us and Pierce. By God's grace, Pierce will be covered under ELBW insurance, but we did not have maternity insurance for Lindsay's c-section and hospital stay. The web address for the fundraising website is: http://www.giveforward.com/teampierce
Prayers needed right now: Pray that Pierce's brain will heal itself and that he will not need a shunt. Pray that is ventricles would unclot so that his spinal fluid and the blood in it could drain. Likewise, there are parts in his front brain that are used in that process. Pray that they are healed and functioning properly.
Pray that his lungs and kidneys would continue to get healthier. Once his kidneys get healthy enough, they can administer the medicine to close his PDA valve. Pray that it only takes one dose to close that valve.
Pray that the PDA causes no issues before they get it closed.
Again, thank you for all the love and prayers.
Love,
Nik, Lindsay, and Pierce
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i love reading about this little fighter, lindsay! i have SO many people here in cleveland praying for him, i'm amazed how much people care, even when they are "strangers" to you and your family. you are amazing people, you and nik.
ReplyDeleteLindsay and Nik,
ReplyDeleteI received your blog from a friend who thought I would know how you guys are feeling and for some extra prayers.
I just finished reading all of your blog from the beginning and feel like it could be the same thing I was writing 4 years ago. We had our twin boys at 26 weeks and were not given too much hope for them. Sadly, we did loose one of our sweet boys to some very serious complications but our Carson fought hard every day and took strength from his brother and everyone who was reading about him and praying for him. He too had grade 3 and 4 bleeds and we were also told that we would have to wait and see what kind of damage had been done, that it could be very minimal. He did have a shunt placed at 4 months old, but it never slowed him down. You would never even know it is there. He now goes to a church preschool, walks, talks up a storm, plays with his friends, is potty-trained and is smarter and sweeter than any other 4 year old I know. There is hope! Have faith and never give up. The baby brain is so resilient and can recover much better and faster than an adult brain.
I don't know if this makes you feel any better or not. I know that when we were going through it, it was nice to hear from someone who knew how we felt. We have been on that roller coaster of emotions, praying so hard before walking in to the NICU and hoping to see calm faces and a peaceful baby boy. We know the ups and downs and how things can change in an instant.
Please know that we (and it looks like so many other people) and praying for you and baby Pierce. Much love and strength from one miracle micro-preemine's parents to another!
Hi Nik and Lindsay, I came across your blog today after seeing Lindsay share it on John Piper's FB page. Just wanted to let you know I am praying hard for Pierce and for you two. My wife is 29 weeks pregnant with our first and I cannot begin to imagine what life is like for you right now. Your story is breaking my heart but I am grateful for your willingness to share it.
ReplyDeleteMuch grace,
Nick Anders
I know this is random, but Lindsay, you can apply for Medicaid even postpartum! It might be worth your time, even as crazy as things are. Stuff I wish someone had told me....
ReplyDeleteYES! You can apply for Mediciad...sorry to chime in but that is such excellent advice. Ask about the Katie Beckett or Deeming Waiver. We didn't get our preemie on Medicaid till he was almost ready to come home, he is still covered and it was a God-send. Ask the social worker in the NICU to help you.
ReplyDelete