I was hoping that my new entry would be about Noah’s birth story and how we’re at home and learning about each other.
However, that’s not the hand we were dealt these past few days.
Noah James was born on December 19, 2010 at 7:54 pm. A healthy 8lbs 10 oz and 20.5″ long. My labor was super fast….I got induced at around 10:00 am on Sunday, sent home by 12:30, then the contractions started hard and fast and we were back at the hospital at around 4 pm, 3 cm dilated and 100% effaced. I got a shot of morphine to take the edge off and we were admitted. An hour and a half later I asked for an epidural, only to find that I was already 10 cm, and it was almost time to push. I pushed for an hour, and then at 7:54 pm, Mr Noah finally joined us on the outside.
Then everything started. He wasn’t breathing right away (he had the cord wrapped around his neck), so they immediately clamped and cut the cord and put him on the side table, and tried to resescitate him. 3 minutes later, he still hadn’t cried, so they wheeled him away to the NICU. Caleb went with him, while my mom stayed with me while I got stitched up and checked.
So I went up to the NICU about an hour later. My lovely baby boy was on this back tray, all hooked up to an IV and a CPAP. Caleb and I spent the next few hours saying hello.
They were worried because Noah had a couple holes in his lungs (they think it was the bag thing they had used to resescitate him at birth), but he got downgraded from a CPAP to a simple little nose prong thing, but he was breathing room air.
On Monday night (so, December 20) they moved him to his own little crib in the main part of the NICU.
On Tuesday morning when we went to visit him (they were calling me in every 3 hours to try to pump breast milk for him, so this was around 5 am), we wrote on the board next to his crib and I was thinking about how I wanted to decorate the board with some tinsel or something for Christmas, and both Caleb and I got to have some skin-to-skin cuddles. Noah had started this weird thing where he’d hold his breath for apparently no reason, but if we stroked him and woke him up, he’d start breathing again. Then at 7 we decided to go downstairs for some breakfast, and the nurse told me to come back at 8:30 to try to pump again.
We were a bit late coming up, the main elevator that I usually used to get upstairs was out so I had to walk a roundabout way up to the NICU.
So we got there at about 8:45…..only to find Noah on the back tray again, and a couple nurses and doctors swarming him. It turns out that he had had a seizure a few minutes before we got there, and they were sending him to the Stollery Children’s Hospital in Edmonton (a 6 hour drive away) for an MRI.
What followed was a giant clusterfuck of trying to get everything together so that we could drive up there and meet him at the hospital. I talked to nurses and my doctor so I could get discharged, I talked to a social worker who hooked us up with a place at the Stollery in their hostel room for Tuesday night, and then a spot at Ronald McDonald House starting on Wednesday. Then Caleb and I said goodbye to Noah, and we headed home to drop everything off and re-pack and start heading to Edmonton.
Noah got airlifted at around 4 pm, and he was in the NICU at the Stollery by 7.
Caleb’s sister and Dad drove up too, in a seperate vehicle.
Caleb and I made it to Edmonton in pretty good time, but then we got completely turned around and it took us over an hour to finally FIND Stollery. So we finally got up to the NICU at around 11 pm.
We talked to the nurse practitioner, and basically, he was on anti-seizure meds, but he was breathing ok. However, his intestines weren’t working properly, so he isn’t able to breast feed right now.
Eventually we went to bed, and after a lot of crying we were finally able to fall asleep. At that point we hadn’t had any sleep for 24 hours.
So this morning I woke up at around 9, on a solid 4 hours of sleep. I contemplating saying hello to Mr Baby, but then this intercom came on (it rings throughout the whole area) that says “CODE BLUE, 3A3”. It terrified me that I may come into the room to see a whole bunch of nurses and doctors crowded around Noah, so I instead stayed in my room.
Once Caleb was up, we went and visited Noah.
This afternoon we had a meeting with a social worker, who asked us about our histories, where we lived, our jobs, etc.
Then we were joined by a doctor and a team of nurses, who were there to tell us their findings.
They were in 0ne word, terrible.
It turns out that Noah is “catastrophically” brain dead. His brain waves are at zero, except for when he has his seizures. He’s breathing room air, but not fast enough, so a ventilator is breathing for him. He’s under massive doses of anti-seizure meds, so he’s basically in an asleep-like state 24/7. He doesn’t have a sucking or grabbing reflex (because of the meds that are suppressing his seizures).
What this means is that long term, Noah will likely never talk or walk or eat on his own. He is severely handicapped, and will have to basically live in the hospital for the rest of his life.
The doctor said that we have two options. 1) We take him off and “let nature do it’s course”, and he’ll pass away….or 2) He lives on ventilators for the rest of his life, and he likely won’t live to be 12 years old.
They’re still going to do a MRI, but basically it is just a formality. Because really, there is no choice. We have to make that choice that every parent dreads. It would be selfish to keep him around when his quality of life would be so poor.
My parents are driving up tomorrow, and we’re going to see if Noah can get shipped up to Grande Prairie for when they unplug him. I need to ask the doctor how long she thinks he’ll have. I’d prefer it if we could bring him home and have him pass away there, but I don’t want to have him die in transport.
I don’t remember what I thought “the worst day of my life” was, but today definitely takes that trophy.
I don’t even know what to do with myself anymore. I’ve spent this entire day crying and wondering WHY and hating life.
I just don’t understand. The doctor says that it was an “acute” thing, so in her words it is “very very bad luck”. There is literally nothing that I could have done differently. It’s just one of those things where it just HAPPENS.
I don’t even know…..”staying positive” literally means nothing now because what is there to stay positive about? These last 9 months have been so anticlimactic….because after all the worry, the pain, the planning…….my baby never gets to come home.