Claire is THREE months old!! 8 pounds 14 ounces (0.18%) and 22.25 (5.8%) inches long. She loves to be held and to swing in her swing. She is starting to "talk" back to us, she can almost roll from her back to her front, she has found her thumb and her hands, and she is starting to reach for and grab onto objects.
She is sleeping so I thought I'd post a quick update.
We saw her cardiologist yesterday and he admitted her to Marybridge, she hadn't kept more than 4oz down in almost two full days, was losing weight pretty quickly, and was really struggling with breathing and dehydration so he felt like she really needed in-patient care.
The great news is that they figured out the diarrhea and vomiting pretty quickly, she has Digoxin toxicity from one of her heart medications. She hasn't had any more of that particular medication in 24 hours and they are testing her blood every 12 hours to make sure that the levels come down. She was over twice the maximum level when we were admitted and was still about double the maximum this morning :(. We will restart it again when they are back to a safer level but will carefully monitor her levels to make sure that they remain safe.
We will be staying here for a few days while they work on developing a safe feeding plan, she had lost about an ounce per day over the last week and is in the lowest percentile that she's ever been in (0.18%).
Her studies last week confirmed both aspiration and reflux all the way up into the very top of her esophagus (they are thinking she is also aspirating the reflux) and her chest x-ray showed still increasing edema and fluid. Over the next few days we will be trying various things so that we can figure out the best, and least-invasive, way to protect her lungs from permanent damage because of the fluid in them. We've already tried thickening her feeds, the heart medications, and several different reflux medications over the last month or so and her lungs continue to get worse so now we are looking at other options. Lots of doctors, lots of opinions, and lots of things to try! We are so thankful for such an amazing team, we even had two of her specialists call from home to check on us late last night and they have been communicating with each other all day to make sure that we are doing everything we can to get Claire growing.
The GREAT news is that the goal of this admittance is just to find a way to get her eating safely and gaining weight so the plan is that we will only be here for a few days. That could change depending on what we try and whether or not it works but, at this point, they are not thinking that this admittance will end in any surgeries - YAY!! The cardiologist is still hopeful that, with her medications, we can wait at least another month for her heart surgery so that she can have time to get a little bigger which will help the surgery go more smoothly as well as the recovery. He has started her on two diuretics, a medication to treat pulmonary hypertension, and one to help her heart work more efficiently. She is stable, we just need to find a way to get her going consistently in the right direction. Lots to be thankful for!!
I will continue to update as I can.
Thank you for your continued prayers. "He's got the whole world in His hands <3."
No comments:
Post a Comment