steps backward

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


  1. I know you probably get questions all the time - so no need to answer if you don't feel like it. Why has P been on steroids for so long? What is their reasoning? It's so hard to know what to believe... each Dr. says different things and sometimes the micro preemie world is super confusing. But the main thing that stood out in this whole update was the NO SHUNT decision from the neurosurgeon. Simply AMAZING!!!!

  2. From a mother of a premie who had to have two shunt surgeries due to a level IV hemorrhage, we are SOOOO grateful the neurosurgeons think Pierce won't need to have one. That is a true answer to prayer.

  3. not to say anything but nice post.

  4. From a mom of a former micropreemie, you are correct to think that there were a lot of changes at once. Our little guy was on an oscillator for 6 wks, took steroids to make it to cpap, stayed on cpap for 6 weeks, then went to nasal canula for at least another 6 weeks before going home on a liter. In the process of trying to wean him off the liter, they tried taking away the caffeine and back he went to cpap and bought himself a couple more weeks in the NICU. He eventually came home on oxygen and caffeine(along with a night nurse.) The BIG upside, however, is that almost five years later, I rarely worry about his lungs. We will continue to pray that the roller coaster will have fewer and fewer bumps and that you will have the strength for the journey each day.