We were a couple of weeks into March already and it felt like we were stuck in NICU limbo. Scarlett was on .3 LPM oxygen and she would not give it up. Every time they tried to wean her down even just a smidge, she would NOT have it. She was happy right where she was. So again, we waited and continued moving on with our “NICU checklist”.
I know I’ve said this a lot and I’m sure I’ve overused this phrase but there is honestly no other way to say it: Scarlett is a miracle. When babies are born prematurely they are at risk for SO MANY different problems from gastrointestinal issues, underdeveloped lungs, and low birth weight. Seriously – they are at risk for many complications. And one of the most common problems that occur in preterm babies, especially when they come as early & as small as Scarlett, is brain bleeds (IVH).
Scarlett. NEVER. Had. ANY.
She had multiple head ultrasounds done every so often because they can occur when oxygen levels fluctuate, and we all know how often THAT happened with Scarlett. So, they always wanted to make sure they weren’t missing any…and every-time there were none to be found.
I don’t know how often that happens. But from my understanding, it’s rare for a micro-preemie to be born and not have any. How else do I describe that other than, a miracle?
Before discharging her, she also had an MRI done in addition to yet another head ultrasound. This was to make sure that she was in the clear and that her brain was developing the way it should be. It’s pretty standard for them to do this before sending a baby home. But another reason they checked Scarlett specifically, was because she kept having Brady episodes. They happened randomly throughout the day and occasionally during feedings and by doing the MRI, it would give doctors (and me) a better understanding of what was going on.
Thankfully! Her MRI was clear. It showed that Scarlett’s little brain was developing really well and again there was no brain bleeds to be found; just as we hoped. As it turned out after having a Barium Swallow Study done, she has really bad reflux and that’s what was causing her episodes. Thank God it wasn’t anything too serious and it could be helped by using different positioning during feeding and with slight incline while she slept.
With the last of her testing done, the doctors had her home equipment ordered (oxygen tanks, tubing, pulse ox monitor, medications, etc.) and we had someone from the Home Health company come in and train BJ & me on how to use the equipment. We also had CPR training as well. All of it was to help prepare us for when she was home. It was…overwhelming to say the very least. There was so much to learn and so many things to remember.
Thinking back on it now, it all just felt so surreal. It was hard to believe that we were so close to bringing Scarlett home. My emotions were all over the place. Every day I spent time talking with her nurse for the day and we would talk about how crazy this ride had been and how amazing it was that Scarlett had overcome all of the odds that were stacked against her. It was finally starting to sink in that it was all real. It was happening. Our dreams of taking Scarlett home were becoming a reality… It also made me realize just how much I was going to miss our NICU family. All of these beautiful, wonderful people who had come to love and care for my daughter and who had been there to support me throughout our entire journey. It was bittersweet. I am forever grateful to them and I have so much love for them. ❤
After about a week of trying and failing to wean Scarlett down on her oxygen, the doctors finally caved and decided that going home on .3LPM wasn’t the WORST thing in the world. At that point, she was the OLDEST baby in the unit and there really wasn’t any reason to keep her any longer. It was time for her to take her “Car Seat Challenge”!!
This was one of the very first things I learned about at the beginning of our NICU journey. I had made a few mom friends at the Ronald McDonald House, after talking with them and learning their stories, I asked a lot of the same questions people would eventually ask me and BJ. What do babies have to do to go home? A lot of their answers were similar to what I have explained to you all so far, somewhere a little different depending on their child’s situation or circumstances, but the one thing they all shared with me was the Car Seat Challenge.
During the Car Seat Challenge, babies are secured in their car seats for two hours and in order to pass the test, they must maintain their oxygen levels the entire time – without any complications. This, of course, is important because a car seat is the first thing a baby is put in as they leave the hospital, so it’s really important that they can be there without experiencing any issues. (Make sense right? lol.)
The day they told us Scarlett was taking her test, I was so excited!! But also really nervous. Considering how bumpy her journey as I didn’t know how well she would do. But knowing that it was finally her time to do it felt like a right of passage for us. It was one of those milestones that we had been anticipating and working towards for such a long time!
Our girl passed with flying colors!! She did so amazing and she had no problem maintaining her oxygen level. We were so proud!! With all of her discharge tests completed, and her home equipment had arrived, her car seat challenge passed, and follow-up appointments with all specialists scheduled…there was only one thing left to do…
Room In! 🙂