Today started off great -- Grace slept for 8 straight hours last night in her crib and then woke up and drank 4 ounces of formula without too much of a fight. We were so excited and hoping that the doctors would decide to cut the TPN completely today, which would get us that much closer to going home.
But, things don't always go as we hope...
When the doctors (finally) rounded after 11 AM, they were encouraged by her progress but not ready to cut TPN altogether. For one, cutting TPN too quickly can apparently have an affect on one's blood sugar, since there is a good amount of dextrose in the mix, which is why they wean people off of it slowly. The second reason that they're not ready to cut TPN is because Grace has not been taking in enough calories yet for them to feel confident that she'll continue to thrive without it. The ultimate goal, set by her nutritionist, is that she would take in 36 ounces of formula a day...yesterday, she took in 10 1/2, and it was a struggle to get her to take in that much.
So, we were a bit disheartened, to say the least, that it doesn't look like we'll be going home tomorrow (Justin was actually hoping for today.) Our doctor is very much on our side. He doesn't want us to be here longer than what is necessary. But, what may be necessary is longer than what we were hoping for. A lot of our doctor's decisions are based on recommendations from nutrition, and although he would like for things to move more quickly, he trusts their expertise in this area. We asked if the nutritionist could come talk to us directly, which she did, and she gave us a lot of helpful information to fill in the gaps that Grace's doctor couldn't.
The main issue now is this: FEEDING. In order to be weaned off TPN, Grace has to take in a certain number of calories every day by mouth. As I already mentioned, so far, she is not doing enough!
Before Grace got sick, she was breastfed. Though I've tried, she has never been willing to take a bottle, and I've never really had the need or the time to force the issue. This whole hospital experienced has forced me to wean her for two reasons: 1) With an already low milk-supply, my body could not keep up given the added stress, sleep deprivation, and poor eating. 2) Her weight gain (or lack thereof) since her six-month well check indicated that she was probably not getting enough calories from breastfeeding (plus cereal/fruits/veggies) to help her sustain a healthy weight for her age. That, combined with all the weight she lost from being sick, has made formula a necessity anyway.
So, Grace has this extra hurdle to get over -- learning to drink formula. And, that's actually two hurdles: learning to drink from a bottle/cup AND learning to like formula. And, that is our problem today. The nutritionist actually changed from one stinky formula to another formula (I think they are all stinky!) The new formula is still a more easily digested formula but supposedly tastes more like other regular baby formulas. I was excited to try the new kind (Alimentum --still very stinky) and really, really hoping she would take to it, but her reaction was actually worse than with the first formula. SO, SO, SO frustrating!! Granted, she's only tried it once, and we'll try again when she wakes up, but this seems to be the problem that might keep us here longer. And, there's really no simple solution, given that Grace is only 9 months and can't tell us herself what the problem is. It might not be the taste at all. Could be the texture, could be that it bothers her tummy. Could be...who knows? But, until we get something figured out, we are not making a lot of progress here.
Please pray that we'll get these feeding issues worked out soon!In short, what needs to happen: Grace needs to take in more calories by mouth, wean off the TPN, and continue to gain weight. (She needs to gain around 2 pounds to be in the 5th percentile for her age.) And, of course, we need to go home!
P.S. I forgot to mention anywhere in this post or previously that, since she started drinking formula on Saturday afternoon, she has been a new baby! Really back to her old self, playing, laughing, smiling all the time. It has been SO encouraging. But, I think that's also what makes this hard -- she looks healthy now, but she's still not ready to go home. However, I'll take this over our extremely sick, lethargic, malnourished baby from the last two weeks any day!!
