When I thought about how I would put our 87 days in the NICU into words, I was overwhelmed and stuck. How could I concisely do it justice? How would I convey the emotional and physical exhaustion we felt? How would I adequately explain the medical jargon we have come so accustomed to in a way that would be easy to understand? What if I left out something important and didn’t realize it until days later? What if, in my honesty about our time there, I hurt or alienated our family and friends? These questions are among the many reasons I have put off writing not only this post but this entire blog. I cannot be 100% authentic about our time in a concise manner, sparing no details, in a way that is easy to understand, without ruffling some feathers. It’s just not possible. And that is why these next few posts terrify me to my core. But I am called to be courageous which Brene Brown as taught me means to share your whole story with your whole heart. So here we go…
I needed to divide our time in the NICU into a few parts, mostly for organization’s sake. Today, I want to share about our experience in the month of May. In my last post, if you read it, I took you though May 18, the night I got discharged and had to face the first of dozens of nights that I would leave a piece of myself behind in a roughly 10×10 carespace to be cared for by strangers. Luckily, those strangers became our second family, and I will be forever grateful for them (more on this next week).
Let me start with this: I do not know how women have C-sections and go home with their babies and manage to take care of them and survive. If this is you, you are a warrior princess, and you deserve a medal. C-sections are MAJOR surgery. A 7-8 inch incision is made across your abdomen cutting through muscle and your uterus is LITERALLY ripped open. I could hardly do anything for myself in those first couple weeks. It hurt to do everything. I couldn’t sit up from bed without help. I couldn’t walk without help (and often a wheelchair stolen from the hospital lobby). I couldn’t even get in and out of the shower by myself. Sitting put pressure on my incision…you know, that giant hole they cut to pull a full(ish) grown baby out of. Everything exhausted me physically. Add not sleeping because of anxiety over my child being in the ICU, pumping every three hours to maybe eventually feed my baby, and those lovely night sweats from postpartum hormones and you get a very tired mama.
In our NICU, each carespace has one recliner for a parent to sit with his/her child. If both parents are there (which honestly did not seem to be the norm), you could roll over a computer chair from the nurses’ station. Sweet and wonderful Alex sat in those horribly uncomfortable swivel chairs every day, so that I could at least be somewhat comfortable in the recliner, but even then, sitting was more or less torture. Pretty much the only “comfortable” position in the first couple of weeks after a C-section is lying completely still while mostly flat, but not all the way flat because then your stitches might get tension and that hurts too. So bless it. But we sat. All day. Just to be near our boy and participate for caretime every three hours. Caretime was the only time we could touch Evan. We would change his diaper, take his temperature, and his nurse would reposition him. This may sound crazy to you if you have never experienced the NICU, but it is critical for these babies. A premature baby is not ready for all the stimulation of the outside world, so while a typical newborn can handle and even enjoy being held, played with, and passed around, a preemie cannot. Sleeping babies grow, so Evan needed as little stimulation as possible so he could rest comfortably in order to get big and strong.
That first Saturday, I had a friend drive me to the hospital a couple hours behind Alex because I knew I wouldn’t be able to last the whole day before I was in too much pain to sit there any longer. He texted me when he got there, “Our nurse today is wonderful. You are going to love her.” The next day, that nurse, Maegan, became our primary. Today, she is one of our closest friends.
Evan was waiting on getting an MRI which is difficult to coordinate since the neonatal transport team has to take him down for it and bring him back up AND the MRI had to be available at the same time as they were. In the meantime, physical therapy made their assessment and gave us tips on how to be careful with his sensitive hip joints, weak range of motion in his arms and legs, and easily molded head. Evan’s breathing seemed to be improving, and they even took him off of respiratory support for about a day. He was still getting most of his nutrition though his PICC line which is basically a fancy long term IV. His was a dual lumen one since his seizure medication couldn’t be pushed at the same time as other stuff he was getting. The IV nutrition (TPN) looks like yellow gatorade in its bag, so I liked to pretend Ev was just refueling after working out.
We finally got his MRI done and it confirmed that a portion of his brain, the corpus callosum, was only partially formed. It also showed that the gray matter of his brain was underdeveloped even for his gestational age. In addition, he had too much fluid in his ventricles and his optic nerve was small. They looked at his spine too and saw potential issues there that would need to be revisited on a repeat MRI once he was significantly bigger (he is still not big enough). We expected most of these findings based on his prenatal testing. One thing we didn’t anticipate was the fact that Evan did not open his eyes. For a while, we weren’t even sure if he could. We also did not anticipate the gastrointestinal issues he would soon present.
Evan started to receive fortified breastmilk through his NG tube (a tube that runs through his nose into his stomach) in small amounts as they weened him onto feeds instead of the TPN. This is when our biggest hurdle we would face in the NICU began. As Evan weened up to full feeds, he began to spit up. You’re probably laughing at that. “Okay, Brooke. All babies spit up.” Yes, they do, but Evan likes to do things in his own dramatic way. By May 24, Evan was throwing up a lot. That day, we thought it could have been so much due to the stress of moving into a new pod in the NICU (there are five rooms of 12 carespaces each called pods. A-C are for more critical care babies, and D and E are for more “grower and feeder” type babies) and having to get endocrine labs drawn that day (a heel stick every half hour for an hour and a half). That was the only day we had to leave because I couldn’t emotionally handle being there. I couldn’t stop myself from crying, and as we left I just kept telling Alex, “I don’t want to be here.” It is a horrible feeling knowing that you are completely incapable of taking care of your own child–medical needs aside, I couldn’t feed him at all or even hold him without help from a nurse.
The next day, we expected things to improve with his vomiting since he was getting settled and wouldn’t need labs drawn. We were wrong. He seemed to be throwing up even more. Over the next few days his vomiting increased despite the efforts we took to improve it. He was getting probiotics. We slowed his feeds down to a continuous rate, so his belly could never get overfull. We tested his stool and confirmed a dairy allergy, so he switched to a hypoallergenic formula instead of breastmilk. Nothing helped. Evan had gained a half a pound over these two weeks, but that is where he would remain until we could figure out how to get him nutrition since he was throwing up just about everything he ate.
These next few weeks would be the most stressful and emotionally taxing we experienced in the NICU. Evan couldn’t stop throwing up, and he had to increase his respiratory support because he would choke on his vomit and stop breathing. Maegan would always tell us, “You guys don’t freak out if we don’t freak out.” But there were so many times in that first few weeks that the nurses did have to freak out a little and hustle to Evan when his vitals would drop. His airway needed suctioning, and he would require the oxygen mask to get his sats up quickly.
It was hard to leave him each night knowing he was miserable from throwing up so much. He would cry his sad, tiny cry, and I couldn’t fix it. I would call his night nurse every night to see how he was doing, and I hated night after night hearing how much he was throwing up or that they had to give him blow by oxygen when his vitals would tank multiple times. He quickly earned his way back to intensive status since he needed to get bumped to a high flow nasal cannula after his worst night of desaturations so far.
Thank God this isn’t the end to Evan’s story. Thank God we did not have to walk this alone. June would throw its own curveballs at us, but our faith would be strengthened, and we would lean into His grace and His peace more than ever.