This Sunday we celebrated day 365, and after what we've been through I consider that nothing short of a miracle especially after day 3.I don't know that I will ever fully understand what happened that day. Partially because I was still medicated whilst recovering from a c-section and partially because I didn't ask enough or the right questions. Trauma will do that to you. We were still learning about things like various types of oxygen support, blood gasses, bilirubin levels, congenital heart defects, PICC lines, pulmonary hypertension, and so much more. Seriously it's a whole new world.
For the first 9 days John and Hunter were in two different towers of the hospital. That in itself was both mentally and physically exhausting. I was forcing myself to walk in an effort to speed up my recovery and I was pumping around the clock. Diving time between the both of them was difficult. We were able to interact more with John and didn't want to miss anything but Hunter was not very stable and things seemed to always be changing.
We walked into the level 3 NICU that day and Taylor pulled up a chair and I sat at the end of Hunter's warmer. I remember it so vividly, the sounds, the smells, all of it. He was so heavily sedated, and I'd yet to hear him cry (it would end up being 8 days before I did), and his chest was retracting so deep. The nurse that day came over and explained to us that Hunter was fighting the ventilator and that wasn't a good thing he was making himself sicker, pockets of his lungs kept collapsing. She told us that they were going to paralyze his lungs so that the machine could do all of the work for him and that this would help him heal. The first words out of my mouth were "WHAT IF THE POWER GOES OUT!" She put the medication in through his PICC line and walked away. A few minutes later we noticed his levels all start to plummet, my hand was on his chest and suddenly he was no longer breathing, at all. Feeling his body quit with my bare hands is something I don't want to ever relive. Alarms started going off and every nurse from our pod and the surrounding ones rushed to him. They pushed us out of the way I was balling and crying but more and more doctors and nurses were surrounding him and yelling things at each other. At that point we could no longer see him. I do know they were still bagging him when a doctor pulled us aside.
"Hi I'm Dr. G. How are you? Never mind that's a stupid question" is what he said to us. He talked to us for a while and then suggested that once we knew he was stable again to go rest or take a walk and come back in a bit. He cared for Hunter for the remainder of his time in level 3 and we will forever credit that man for saving Hunter's life. For several days it seemed like the only update we would get was "he's sick, hes very sick. You have to remember he's very sick". But on day 8 the most amazing thing happened, we walked in to visit him and I dropped my bags on the floor in shock Hunter was off the vent and for the first time I heard my baby cry. And that night we held him for the first time.
It wasn't until a month later when he was struggling with feedings that we learned of the brain bleed that his neurologist now believes caused his cerebal palsy. Cerebal palsy is caused by lack of oxygen to the brain and if this story gives you any indication as to how that happened then maybe you understand just a little more about Hunter. It took up until just a few days before he came home to come off of supplemental oxygen for good. He would do great for a few days and then I'd come back to "before you walk over there I have to warn you he's back on a cannula", or "we need oxygen for feeds, he just can't suck swallow breathe". He never did get the suck swallow breathe thing either, but really if you stopped breathing when you took a drink would you want to? He did take five good sips of juice out of a straw cup last week which was the most we've seen since April. I literally jumped up and down in the therapists office.
We don't talk about it often and we didn't really tell much of anyone after it happened. We leaned on each other, on God and on our NICU nurses alot during those first several days. When Taylor and I do talk about it we refer to it as the day that Hunter quit. And I thank God that when Hunter quit machines and modern medicine did not, because that is what saved him. That day in particular did leave me with some anxiety because in that moment and the hours following I truly wondered if Hunter would make it home. I remember in June when Hunter had his g-tube surgery we had been overflowed to the PICU floor for his recovery period because the general floor was full and I was walking back from grabbing a snack when I heard the alarms going off in a patients room and I couldn't get out of the hall fast enough, I had to get away from those sounds and hug my baby. Or when he had his endoscopy done they kept making me move him around because his sats were dipping lower than they wanted after he'd woken up. Every time he's been under anesthesia I panic, every time he's sick I'm scared his lungs will fail again. They've told me pneumonia or rsv could put him right back in that place, and the idea horrifies me. Preemie lungs will always be preemie lungs his pulmonoligist told me. I am constantly reminding myself that he's healthier than he's ever been but I am forever effected by that day. Days like that aren't uncommon though, lots of preemie and even term families go through this, some of them multiple times.
So while most mom's are sad for their babies first birthday, I felt my self rejoicing as it approached. We did it! We made it through the scariest and darkest days of our lives, we made it through literally xrays, ultrasounds, mri's, echocardiograms, ekgs, wires, machines, monitors, feeding tubes, hospital stays, you name it and literally over 100 outpatient appointments WE DID IT! And I am so overwhelmingly proud of my miracles!
Until next time,
Momma D
XOX
XOX
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