Home » Uncategorized » He would just forget….

He would just forget….

There are just some things in your life you never, ever forget. You can be decades beyond them and a simple sound, a smell, an image will pull you right back to *that* place as if not a second had gone by. Certainly, when anyone becomes a new parent, there becomes a “before children” and “after children” separation in life.  When you have a child born incredibly early, there becomes a “before prematurity” and “after prematurity” as well as the before and after children arrived divisions. Before Ryley was born, I’d been in ICU’s before, and those times were not easy.  But not even that could prepare me for seeing my child laying inside an isolette in a neonatal ICU.

I distinctly remember walking into that NICU the first time. Michael had already spent five days going back and forth. He knew the receptionist, knew where to look to see which “pod” Ryley was in, knew the hand washing routine, knew what our son looked like. I felt so lost. I could feel my heart absolutely pounding in my chest and I was shaking I was so nervous. Michael pointed things out, led me through the routine, and then took me to our son’s bedside. My immediate instinct was to touch, to hold, to comfort. But I couldn’t do that. I looked around in awe….machines beeping, wires crossing, nurses talking in shushed voices. And there he was…..my child, inside of a plastic box, tape and tubes everywhere, naked but for a hat, diaper, and “goggles” (he was finishing up his bilirubin lights stint for jaundice). My heart broke, but at the same time, I was in awe. This was my son. I did hold him that evening…on a pillow because he was too small to hold in my arms….but I found out quickly that getting to hold Ryley was not going to be an everyday occurrence.

If Ryley had still been in-utero at 26 weeks, he would not have to breath all the time. He would just practice breathing every once in awhile. He would not have to eat or digest.  He would just practice and get ready for birth at 40 weeks. Micro-preemies are forced to do things they would normally only practice doing, so sometimes, they just forget. And  Ryley would just forget (frequently) that he had to breath, all the time.  He would forget, and he would stop breathing. His heartrate would plummet. His blood oxygen levels would drop like a rock. These episodes I VERY quickly learned were called apnea/bradycardia episodes (also known as “A’s and B’s” or, as we called them, “bradys”).  When he would “brady”, the alarms would sound.  One alarm was a high-pitched beeping, the other was a low pitched bonging.  And then the worst would come…Ryley would turn gray.  Sometimes, you could bring him right out of it by tapping him or tickling his foot. Sometimes that wouldn’t work. He’d get more stimulation, and the oxygen levels on his CPAP would be raised, and he might get more caffeine in his IV.  In those early days, I would stand there helplessly whenever the bradys happened – and they were pretty frequent then. My heart would be in my throat, and I would be convinced that this time, it was it, we were going to lose him. My stress level would go off the charts every time his alarms went off.

I will never, ever get those sounds out of my head. It’s been over nine years since I’ve heard those alarms, but I can still hear them in my mind.  Even worse, I will never, ever forget the sight of my son not breathing, turning gray.  Last year, my mom had heart surgery. I went to see her, and while I was there, I heard that beeping and bonging. I had a panic attack and had to walk out for a few minutes. In an instant, years had been erased and mentally, I was back in that NICU praying for Ryley to come back from a brady.

Bradys, and beeping and bonging became part of our NICU routine. Over time, the brady episodes became fewer and fewer until eventually they stopped completely. Ryley had one brady after he came home from the NICU, but he had it while he was eating and we were prepared for it. He thankfully came right out of it and never looked back. I still, however, find myself watching him sleep sometimes, and putting my hand on his chest to make sure he’s breathing. It’s been over nine years since he “just forgot” to breath. I guess there are just times I’m not entirely convinced I get to keep him.

2 thoughts on “He would just forget….

  1. After reading that Donna…I have no words…I just want to wrap you in a hug!!!!!
    Love you!

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