Daphne has made a lot of progress this week. We are super proud of her. I’m looking back on my journal from this week and noticed that she started the week off with only taking in 4 mL/hour of food. Now she has worked her way up almost to the goal of 40 mL/hour. What is really great about that is her chylothorax seems to be getting better even with increasing her feeds!
Early on this week her chest x-rays, although not terrible, weren’t improving. Her chest tube was draining very little and needed TPA three days in a row to drain at all. Thursday morning Daphne finally had a very good chest x-ray! She didn’t need TPA in her chest tube that morning. Today she had another good chest x-ray. Her time off of C-PAP has been increasing too. She used to seem really tired by the time she was due to go back on C-PAP. Now she has been tolerating it very well.
This week speech pathologists have also started to get very involved in Daphne’s care. Kids with long hospitalizations can start to get oral aversions so we are working on that. I am not too worried about that (I am still so happy about the fact that she survived her two transplants!) She does take her soother, put toys and fingers in her mouth so those are good signs. We are working on getting her to taste rice cereal. Not enough to actually feed her, just to get her used to the taste. I can’t say she likes the cereal, but she doesn’t gag or cry, although she does purse her lips a lot.
Another big event this week was taking Daphne for a walk around the hospital! So far the only times she has left the PICU was to go to the OR or to get a CT. This time she went to the Healing Gardens instead! It did take two nurses and a respiratory therapist to accompany us, but it was still nice. Daphne really seemed to take in all the new sites.
Another step this week was that we have started to dress her again! She was getting quite well known for being the baby wearing leg warmers all the time. Now I have started to put shirts on her as well. Button up shirts work the best to accommodate her C-PAP and her broviac. She is still wearing her baby legs though, it is her signature look!
Here are some more pictures from this week. First, Rowan at dance class…
Rowan and Daphne playing with a balloon…
Daphne enjoying a bed bath… I really should have gotten video of this one.