Hi everyone. Hope you're having a great weekend! I figured I should probably give everyone an update and answer some of the questions we keep getting but I forget to address.
Let me start by answering some questions we've been getting and pass along some information I've been forgetting to include in my previous posts. I'll do this in the form of a list. For those of you who know me, know I love numbered lists. So either David Letterman is a distant relative or it's my Type A personality. Probably the latter.
1. Kambry weighed 5 lbs 10 oz and was 19.5 in long. The weight is an estimate as she was hooked up to several tubes by the time she was weighed, but they get as close as they can.
2. They have not yet set a date for surgery. They used to perform surgery right away but have found that it's better to let them stabilize after birth instead of going from one traumatic event to the next. Makes sense.
3. Her intestines were not outside her body, nor was any other organ. I love TJ Oshie as much as the next UND alum but our babies did not have the same defect.
4. Remember the game telephone we played in elementary to show how things get lost in translation from kid 1 to kid 15 or whatever. This is probably how my medical updates tend to be. Only I lose or misinterpret as much information as 10 kids in that chain. The world is a better place as long as I don't work in the medical field. My knowledge starts and ends with the stuff I learned from the 'Skeleton Dance' in grade school. Just keep that in mind when I'm writing about her updates. I'm doing the best I can!!
5. I appreciate everyone telling me how strong I am and I'd like to think I am a pretty tough cookie, but the strength I've had the past few months and especially since birth has truly been from God. An answered prayer. A year ago I would have told you there's no chance I could handle something like this. So know that my prayers and yours are being answered.
6. Yes, I did drive myself to the hospital. :)
As far as what's happened since my last post - Kambry opened her eyes!! It was an awesome moment and she's done it a few times since. She's not as sedated as she had to be for surgery so she's awake more and moving her hands and feet. She'll even grasp your finger.
This weekend they wanted to keep her in resting mode and try to not make any huge changes. She's very stable and they just wanted to find her 'happy place' as far as meds, etc go. They've been able to take her off several meds and as of this morning, they stopped another blood pressure medication. This shows that she's managing this on her own! They turned up her oscillator a little this morning to get some more gas in her lungs and open them up a little. They do this slowly to make sure she handles it well. As I said before, they mostly just want her resting/recovering right now for the week ahead. It sounds like they may try weaning her off ECMO the early part of the week to see how she does. A trial run so they can start to assess whether they can remove her from ECMO and do the repair or if her surgery will be done while she's on ECMO. We're really hoping she can be removed because she has to be on blood thinners while on ECMO and this can obviously be a big risk during surgery.
Overall the doctors and nurses seem very pleased with how she is doing right now. Kambry has her own RN at all times and while on ECMO she also has a specialist for that. She's getting plenty of care! Today they removed some of her fluids with the ECMO machine because she was getting a little too puffy for their liking. But she is peeing really well which is great! The next couple of days will be big days. They will be testing her. So as you can imagine we are very nervous. My boss sent me the following quote which made me tear up because I know how true it is in Kambry's case:
Let her sleep, for when she wakes she will move mountains.
Move mountains baby Kambry!! Show everyone what a strong girl you are! Or as Uncle Lance would say- show them you're Bison strong! And Lord please give her additional strength and fight over the next few days. And help her feel all the love she has here and back home.
Love to you all,
Heidi