NICU Notes

     I started this blog to keep people up to date on J & B but also collect all of my random thoughts on life post-NICU as well as raising two micro-preemies. We were given so much help and support when we needed it my hope is that this reaches at least one person and makes them feel not so alone at any point in their journey. Occasionally these posts will pop up, so ­­­let’s call them NICU notes. 

      Let me start by saying that I love St. Louis Children’s Hospital. I will praise the D-Room, NICU, doctors and nurses to anyone that will listen. Our therapists are fantastic and we have an amazing team for the boys. This has nothing to do with the people in our village; from day one we agreed that we would try to only surround ourselves with people we trusted and were comfortable with, and we have. The care plans that these amazingly caring and smart people have put together have gotten the boys to where they are now and as for where they’re going, the possibilities are endless. 

      This is going to sound odd, but after having lunch with a dear NICU friend (van, in Swedish) when I realized that I wasn’t the only one feeling this way, it been on my mind to share it. When you have a baby (or two) that’s been so medically involved, they don’t feel like your own. It has nothing to do with the bond or the love you have for them, but there is definitely a piece of the parenting process that feels like its missing. 

     It’s hard to describe what it’s like to not be making any of the decisions regarding the care for your own kids. For most people after you deliver a baby, you’re at the hospital for a day or two and then you head home and are on your own. As they grow,  if you have a baby question you may consult a friend, Google, or your pediatrician but ultimately go with your gut and decide what to do.  For a parent of a micro-preemie from day one, you are away from your baby and trusting their lives in the hands of the NICU. As they grow, you’re directed how, when and if you’ll be able to hold, change or care for them. Their day is dictated by monitors, tests and labs.  I thought that feeling of being out of control would disappear after discharge, but it didn’t. 

      Every part of the boys’ lives is dictated to us by someone on their care team. We have a Neonatology team that follows them in the Newborn Clinic, our own Pediatrician, two dieticians, two Occupational Therapists, two Physical Therapists, and a Speech Pathologist. That’s not even including the specialists-General Surgery, Neurology & Neuro Surgery for B, and Ophthalmology. That is A LOT of people and opinions around the table that comes with appointments, emails, phone calls and sometimes conflicting opinions when a question comes up. ­­It can be exhausting. However, we are not blind to the fact that we need to follow their directions to give the boys the best chance at growing and developing as normally as possible and we credit them with bringing them to where they are today (as well as the posse of people that pray for them!). 

     Constantly questioning my own thoughts & ideas about their care isn’t something I expected to be going through, but it’s where we are right now. They've been so medically complicated (involved? fancy? challenging?) for so long, at any time when an issue comes up my first instinct (rather than listening to my gut) is to call someone at the hospital. Always. It just becomes ingrained after so long (and you get to be on a first name basis with A LOT of different offices lol)  I haven’t been in a situation where I felt I couldn’t express my ideas but I am a pretty decisive person and knowing someone else always has the final say hasn’t been an easy adjustment.

      As an example, we just went through a three week discussion to decide what formula everyone thought Bradley should be on. Three weeks. About formula. General surgery had to be consulted because it has extra calories which could upset his belly, we had to find one that he liked the taste of so he would continue to feed by the bottle with OT, the ratios of Phosphorus and Calcium need to be considered to help his bones grow and the ounces per feed needed to be adjusted.  It was a lot of back and forth, but luckily we have these trained minds to help find what will be best for Bradley. I probably would have stuck with the Members Mark sensitive formula from Sams Club that he was originally on and his bones would have stopped growing and he could have started glowing in the dark- lol!

   In these last two weeks as we’ve been away from the hospital (both boys are healthy!) doing normal people things and generally being ON OUR OWN these feelings have faded away. Hopefully, as the boys grow the visits will become fewer and farther between (looking at you B) and we'll be able to be more independent. Maybe this is what a typical family feels like. Maybe not. We’ll never know, but for now we are going to enjoy the Summer and always have SLCH on speed dial.