With that said, we still have some things to overcome. The chylothorax that we mentioned a couple of days ago is probably going to set us back a bit. I think she'd be in good shape to be extubated in the next day or two if it weren't for that, but they don't want to extubate until we're sure that's totally resolved. The treatment so far has been to stop feeds. The plan for right now is to resume feeds on Wednesday, but instead of being on breast milk she will get a special formula called Enfaport. It has high levels of protein and something called MCT that help babies absorb fat differently so it won't leak into her lymphic system. Now, don't panic - it won't be forever. Hopefully we'll gradually move to a half Enfaport/half breast milk blend and then back to all breast milk. My hope is that we can get through all those stages before we begin oral feeding so that I can still introduce the breast to Clara before a bottle. But we'll see.
Rounds this morning went well. The new attending neonatologist on rotation right now is Dr. Welch and she seems wonderful. Thanks for your prayers about that transition. We continue to be so grateful for the excellent medical team at Brenner's and the wonderful care that Clara is receiving. We successfully got Clara off of Nitric Oxide today which was the main goal for today. We also weaned her hydrocortizone down by another 10% and her blood pressure continues to tolerate that well. She's still getting Lasix (now down to three times a day instead of four) and continues to diurese well. Her new weight (which may not correlate exactly with her old weights since it was on a different scale) is 5.1kg or 11.2 pounds. We're estimating her "dry weight" at 4kg now, so just 1 more kg to go! Come on, Clara! They still need to change her IV access. The hope is that sometime tonight they will place a picc (peripherally inserted central catheter) line in her leg with a double lumin (in case you want to know the nitty gritty: we have to have two lines because they cannot run lipids with versed and that's two of her main drips). If they cannot get the picc line in, they will do the broviac line that I mentioned yesterday. A picc line is a little less intense (a nurse practitioner does it instead of a surgeon) and a safer option overall. So, we hope that will work out. We have also requested a Physical Therapy consult to come help her with her neck and head because after 22 days on ECMO and her head in the same position she's got a crick in her neck that I wouldn't wish on my enemy! I let them all know at rounds that my thirtieth birthday is Saturday and the only thing I really want is to be able to hold my baby girl for the first time. Nothing like imposing totally artificial and medically unrelated deadlines, right? We'll see if it happens....
So, that's about all the medical updates. In addition to being a total rock star with her saturations and not getting agitated at stimulation today, Clara was also very alert. We had so much fun together today! This afternoon she was wide awake from about 2:00PM-5:00PM. We read stories, played with a lamb finger puppet she got for Easter, played with a rattle, watched her mobile, talked about life, and I sang every single camp song I could think of. Then she was still awake and I was out of ideas. But boy was it fun. I just soak up every last minute with that little girl. We know that she'll probably have some developmental delays from being in a bed and sedated for so long, but today she was acting more and more like a typical one-month old. She could track with her eyes, was responding to the sound of my voice, and really loved looking towards the light out the window. Quite frankly, I think she may end up being one smart cookie.
Here are a few quick photos from today:
|Watching her mobile|
|A rainbow bow, for a very bright day!|
|Looking out the window. Planning her escape, I'm sure.|
|Kisses from Big Daddy|
|Flipped around in her new bed position!|
|Tiny hands next to Big Daddy's finger|
|Snuggling her lovey|
|Here's her Nitric Oxide machine. IT'S TURNED OFF!!!!|
Please pray that Clara will continue to rest peacefully tonight, that her chylothorax will resolve quickly and we can resume feeds soon, that she will be able to be extubated soon and that the continuing weaning of her remaining medications and drips will go well so that we can be moved to Intermediate Care and begin the next stage of her recovery. We are so thankful for a wonderful day.