Views from Our Windows

The NICU at OHSU has a few isolation rooms, but most babies in here are in pods. We got moved into a pod with four beds not long after Isaiah was extubated. We are right by the eastern facing windows and I often get to watch the sun rise from up here. Clear winter days in the PNW are some of my favorite bacause we get views like this...

Isaiah's body is strong and stubborn all at once. In January he quickly went from being intubated to high flow oxygen to needing no extra respiratory support. He tolerated his pain and discomfort well enough to need no sedation or pain medication fairly soon after surgery. In all regards but one he is perfect and we are so blessed he is doing so well. 

CDH is still an unknown condition to most people. It is a major genetic defect that does not have the research funding and attention many other conditions with similar occurrence rate get. The mortality rate for CDH is on average 40%, occuring at any point in the first year of life for a litany of reasons. I joined a CDH support Facebook group, and the variation in this condition is staggering. Many of these sweet fighters go on to live "normal" lives. Many need respiratory support if they catch even a simple cold thoughout their childhood. Many go home with various feeding tubes and oxygen tanks that will be with them for years. In six short months I have cried with three families whose little one couldn't fight any more. 

So I mean it when I say we are blessed. Blessed by your prayers and by the attention Isaiah has and is recieving. 

(Pause to thank all those we spend time with for respecting our vaccination decisions. I know it's a polarizing topic for some people, but the fact is that having those in our circle have up to date vaccinations will help protect our sweet baby. I could make an entire post about my stance on vaccines, but that's not why I'm here. Just thank you for respecting our needs.)

Isaiah's only hurdle, the ONE thing keeping us here, is his ability to feed and digest. Reflux is extremely common in CDH kids, and it has been our slow battle most of January. Post-op, Isaiah's organs will eventually grow and settle more into their proper places. But for now they are still stretched and straining against how they grew and how they need to be. He has regular emesis (spit up) that has lessened over the month but is still happening. He only just started stooling on his own, but infrequently. There is a sharp turn from his stomach to his intestines that has made many attempts at placing an NJ tube (in nose, down through stomach, into small intestine) fail. An NJ tube would bypass his stomach, hopefully relieving much of his reflux while still providing him with nutrition. 

The first time we went down to radiology to try and get it placed was torture for me. My sweet boy was four weeks old, and I was priveledged enough (sarcasm) to get to hold him down on the x-ray table while they tried for half an hour to get the tube in place. There have been moments throughout this journey that I feel the deep parental urge to scoop him up and run away somewhere safe, but never that strong. I haven't been able to be in the room any time he needs a new NG tube (nose to stomach) since, and he needs those often because of how often he spits up. Yesterday they decided to try another NJ placement, and I couldn't make myself go. They were gone for over an hour. Unsuccessful again. As soon as I picked him up from his bed and settled us into the rocking chair, he sighed and fell asleep. He was exhausted. 

While he is having less emesis, the fact that it is still occuring means a high possiblity of us staying here longer to figure it out. He has taken a pacifier, proving he has a sucking reflex still. Based on that we tried given him a few milliliters of milk in a bottle and he took it! We will continue to practice bottle feeding off an on over the next few days and see if that improves anything. 

In other news, I got to see my big boys over the weekend! 

And Brick got to hold Isaiah for the first time!

Seeing my family again after almost an entire month was good for my soul! I missed them all so much! We got cameras for a few rooms in our house before I left with the boys in early December, and I spend more time than I care to admit spying on my husband and sons living their lives at home through them. It may make me miss them more, but it also reassures me that we're doing ok. 

We're grateful for the prayers and help. We're grateful for our doctor's and nurses. We're grateful for technology keeping us close while we are apart. 

We will get through this. I will get to bring my baby home. We take one day at a time and make a point to find one positive thing in every day. 

Much love, from our clan to yours 💙