This morning I was awoken by an angel.
I don't mean this one, although he is quite a little cherub:
Her name is Dr. Smith, and she is a neonatologist here in the St. Charles NICU.
She pulled up a chair next to me, introduced herself, and explained that she has very reassuring information to share with me in spite of the disappointing lab result we received. Carter's hemocrit (red blood cell count) level had continued to go down and we were now at 23, meaning we have reached transfusion territory.
Dr. Smith explained that in her 20 years at Dornbecher (the children's hospital in Portland where she practiced before coming to St. Charles), she has seen about ten other cases that look exactly like Carter's. Although there is no medical explanation for it and you won't read about it in any textbooks yet, other babies have also lysed their red blood cells at high enough rates that it caused a late bilirubin spike. The good news is, although there is no technical diagnosis, these babies have gone on to live normal, healthy lives with no issues.
At this point, we have ruled out everything scary. The rare G6PD liver enzyme deficiency that was suspected to be the culprit came back from the lab negative. After days of testing and monitoring, it looks like we have a freak, transient condition that is going to go away and leave us with a healthy baby.
I suppose the big question is: We have had access to Dr. Smith this whole time even though she was not the attending physician until today - why did we not have this information until now?
Trust me, I asked. The fact of the matter is, Carter's story had to play out so everyone could see the big picture. There were a lot of possible reasons why this is happening, so it has been medically imperative to rule out all of the more common causes before we could land here. In the end, it is a good thing is that we landed in the most benign place possible. I will take a transient condition that will stay in my rear view mirror as I drive away from the NICU (hopefully tomorrow).
As I sit here and write, Carter is having a blood transfusion. It sounds scary, but it is a simple procedure where he has to lie in his bed for four hours while red blood cells are pumped into his body via an IV. It is quite peaceful so long as we can hold him off that long without eating. His bilirubin finally fell off the plateau and went down another point, so we are on the downward slope. The hope is that the transfusion will "top off the tank" and give him the red blood cells needed to get his levels normal again. As a result, we expect to see his oxygen saturation levels to stabilize because he will have more hemoglobin in this blood for it to bind to. If all goes well, we get to go home soon and be a family again.
For now, I guess I will continue to binge-watch Mad Men on Netflix and read way to many parenting articles on Scary Mommy. I can't wait to get out of this recliner and into my Tempurpedic bed. My chiropractor is going to directly benefit from this experience.
Our brave little guy receiving extra gas for his tank:
The makeshift IV boot ensuring we only have to do this once. The blood cells are being pumped in from the tube at the top. Notice his battle wounds from all the heel pokes - they are all over his heels. Poor baby!
Thinking of you, Colin, Jackson and Carter. Good job little buddy Carter. And this is why we teach our students Science, so that they can understand all the stuff like all the stuff your mommy is hearing about whats going on with you!! Love to you all!
ReplyDeleteJenny probably should have proof read her comment before posting ;) Hugs!
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