There is something about Friday. No matter where in the world you are or what you're doing Friday feels good. It feels light and easy.
The day did not disappoint.
Last night as we left the hospital Nora "nippled" 10 ml of formula (meaning, she took it by mouth rather than by the tube in her nose). I was feeling hopeful as that was the most we had seen her take in days. But I tried not to get my hopes too high, knowing that it could have been a fluke, flaw in measurement, anything but progress. But what I really wanted it to be was progress.
When we arrived this morning the nurse came in to proudly say that during the overnight feeding Nora had gotten 21 mls down! WHAT? Now that, that sounds an awful lot like progress.
This morning 13ml, this afternoon 30!!!!! These numbers still fall short of what she was guzzling down before surgery, and of our goal of 47 ml, AND we only attempt during every other feeding- BUT, it is leaps and bounds ahead of the 2-5 ml we had been seeing for days! HOOOORRRRAAAAYYYY. (Now everyone go knock on wood and be hush hush about this- we mustn't ruin all the goodness).
Now, there is potential that this progress won't really mean much. Remember the swallow study that we were hoping for yesterday? We didn't get to take it. The doctors recommend that baby can consistently take 15ml of fluid by mouth in order to get an accurate result from the swallow study. Nora at that time had gotten 8ml twice- they deemed us not ready.
I was super bummed because that very swallow study is pretty much the only thing keeping us in here these days. But, in the end giving her time to grow and heal are not at all a bad thing, and there is more of a chance that she will then pass the study. So, we wait. Our next trial date is Monday. Assuming at that time she is still swallowing these larger numbers, we can get some answers.
If she passes the swallow study, meaning she is not getting the food into her lungs as she eats, we will likely get to go home soonish with a feeding tube of sorts (yet to be determined). From there we will practice eating until she can consistently reach her goal amounts by mouth, then remove the tube and go on with life. In some time we would return to check her vocal cords and see if they have healed...I think?
If she doesn't pass the swallow study, meaning she is getting food into her lungs as she eats, she will likely be given a G-tube in her stomach and be deemed "unsafe" to eat for at least six weeks. There is small potential for an NG-tube, like the one in her nose right now, but we're not real sure. If a G-tube is the case, we've already taken steps to get that surgery done on Tuesday, then we can make a quick exit later in the week.
So, no matter which path we take, it appears as though we'll be out of here before we make it three weeks! Lord, I hope so!
We have begun the necessary steps to go home. This begins with home therapies. Because of Nora's diagnosis we will be given a slew of supporters as she grows to ensure she is making the progress she needs. We've got ourselves a physical therapist, an occupational therapist, and a speech therapist. All of these different therapies play a role in Nora's development. We are making appointments and plans for future visits and finding out all of the things we have up and coming. Aside from the pulmonology follow-up in a few months for her lungs there is a long list of different doctor's Nora may visit in her future. This list includes, but is not limited to: endocrinologist, psychologist, neurologist, cardiologist, geneticist, genetic counselor, the list goes on....
When I get information like this I am overjoyed to know that all of these people in the world are out there to organize themselves into a great big team to help Ms. Nora. How wonderful.
Except, I have more feelings too. The geneticist man that told me my head was small back in October came to visit yesterday. He had a looksie at our baby girl and proceeded to tell me all of the things that are characteristic of Turner's about her. He wasn't negative about it. He was impressed by some things about her, and he gave us helpful information. But already I felt like she has been categorized. Already Nora has been labeled as both a "cardiac baby" and a "Turner's baby." She is just so young to already be labeled as anything but awesome. Even while I was still pregnant the labeling began and I was so overwhelmed and annoyed by it all. It was always TURNER'S, TURNER'S TURNER'S. It is obviously important and special and kinda neat that she is such a fighter, but I don't want her to grow up feeling labeled as anything but herself. HOW ON EARTH DO I HELP HER DO THAT WITH ALL OF THESE PEOPLE TELLING US ALL THE THINGS!?!!?!?! How does she get all this fancy and special treatment that no one else gets and not feel like she is somehow "different?" OR, perhaps I'm overthinking this and her being different is going to be super cool and she will be all sorts of proud of herself?
Only God knows how we'll manage all the feelings that come with all this....stuff. I imagine we'll get through it and in ten years and then twenty years I'll think back at myself and realize I was so silly, and naive, and such a worry wart.
For now though, Turner's or not, I see only our perfect baby girl. And she is two weeks old! She has done SO much in her first two weeks. And despite the monitors and the hospital setting and the lack of supplies we managed ourselves a little photo session:
Oh. You prefer color you say!?!? OK!
Prayers are still welcomed, and so necessary. She is here- and sometimes I just can't even believe it. It seems unreal, like it wasn't supposed to happen, but it did anyway. And she is so perfect and little and cute. But there are still a lot of things. So, better safe than sorry- pray for feeding and lungs, and maybe that Kev and I don't lose our minds in here :)
THANK YOU.
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