I felt the need to update my blog today simply because SO much has happened in the 6 days since I wrote my last one.
When I last wrote, we had literally no hope at all. Over the couple of days following “the big news”, we finished things up as best we could and came to accept (as much as we really could) that my baby would pass away.
So on Christmas Eve, we had a lady come in and do foot and hand impressions, and we had the hospital photographer come in and take absolutely beautiful pictures of Noah for us. Caleb’s dad said a prayer, and I had a chaplin come in to give a blessing. My favorite part of what she said was that Noah could have died in utero, but he decided that he wanted to come out so he could meet us. Of course it made me bawl (well, what doesn’t these days!), but it was very nicely worded, and rather comforting.
At about 5 pm, Noah was taken off all of his tubes, and transported to our hostel room, en suite from the NICU. The photographer took some pictures of him de-tubed, and then left. Caleb and I took our shirts off and just laid with our son, skin-to-skin. We had no idea how long he’d hold on for, so we wanted every second to count, and we wanted it just to be us.
A few days passed. Noah held strong. We didn’t leave the room for 3 days straight, we just went down the hall to the bathroom and that was it. Luckily my parents and sister made it in one piece, and Caleb’s parents and sister were here too, so they took care of bringing us food. Neither of us could stand to leave the room for longer than it took to go to the bathroom. We were literally expecting Noah to stop breathing at any moment. The first night was the most terrifying. We didn’t even consciously fall asleep, it just happened, and we were so relieved that Noah didn’t pass away while we slept.
That night I had a dream that my Grandpa met Noah. My Grandpa died last December, and his funeral anniversary was my due date. The best part was that the Grandpa in my dream was the Grandpa that I remember….before he got really sick, and when he used to still live out at the acreage (he got moved to an old folk’s home about a year before he passed) and bake his delicious homemade bread. That’s the Grandpa that I like to remember, and that’s the Grandpa that met Noah. It was very comforting.
Then Monday (December 27) rolled around. The week before, the doctor had recommended that we take him off sooner rather than later, since she said that if we waited until Monday (which was the earliest possible day that Grande Prairie could take him, so that we could have him pass away at home with us) he’d likely be breathing on his own (he had been on ventilators). Basically she said that it would be extending his suffering, so we had decided to take him off on Christmas Eve, the day after she told us that.
We had a visit from another doctor, and during his examination of Noah, he was incredibly surprised to find that Noah had a sucking reflex. So then he suggested that we try feeding him (he had yet to be actually fed since birth….he had been on nutrition IVs, and that had been removed along with all of his other tubes on Christmas Eve), since he anticipated that we may experience vast disapproval from the palative care nurses we may come in contact with in Grande Prairie.
You may think us heartless, but please keep in mind that he wasn’t expected to even survive that first day off the tubes. It was an incredibly hard decision, but based on everything that the doctors had told us, it would have just extended his suffering.
So with the discovery of the sucking reflex, we tried a bottle. And against all odds, Noah sucked it back like he’d just been waiting to show us what he could do. So then we started him on a 3 hour feed schedule, mixing what little breast milk I had with formula. That turned out to be too close together, so we extended it to 4 hours, and he’s been good with that so far.
Today we had a conversation with a pediatrician. Noah happened to be awake while she was there, and lo and behold, our baby suddenly had a bit of a startle reflex!
She is a bit concerned with his legs since they are stuck in a “froggy” position, but the most wonderful thing happened…..while she was working his legs trying to get them to loosen……
We couldn’t believe it!! We hadn’t heard him cry since we had left Grande Prairie a week ago. It’s funny that I was SO happy to hear my child cry. 🙂
They are now sending him for another EEG tomorrow, because they may have been wrong with his prognosis. The doctor had said that he was a “3” on the brain damage scale*, but now they think he may be a “2”, and the meds that he had been on had clouded his result.
The meds have a half-life of 100 hours (so, a very long time), so the question remains as to how much more Noah will change as the meds steadily wear off further.
She did say that sometimes seizures show up early and then never show up again, but obviously we’ll have no idea if this is the case for Noah until an extended amount of time has passed.
So we’ve gotten the go-ahead to take our lovely baby home tomorrow after he has his EEG. We get to drive him down, and we borrowed a car seat from a family friend of Caleb’s since ours is at home. We’re getting a referral to a pediatrician in Grande Prairie, and we’ll have to go see him within a week, just so that he has an idea of what Noah’s “baseline” is, and to get a better understanding of where he eventually goes.
There will still be damage, but as of this moment we have no idea how extensive it’ll be. The interesting thing is that as far as modern technology has gone, the brain is still a mystery in a lot of ways.
So right now, there is some happiness. Or as Caleb’s FB status said yesterday, “a glimmer of hope in the dark is a blinding light.”
We’re taking it one day at a time. We’re not out of the woods yet, but we’re certainly over the river.
“It bears all things, believes all things, hopes all things, endures all things. Love never fails.” 1 Cor. 13:4.
* She explained the brain damage scale to us like this:
1- high blood pressure, hyper all the time
2- the opposite, lethargic and kind of slow
3- comatose, “catastrophic” damage [Noah’s original prognosis]
We’d like to extend a gigantic THANK YOU to everyone for their love, support, and prayers these last few days. You have no idea how much Caleb, Noah, and I appreciate it. ❤