Natalie has not made any improvements as far as her respiratory status is concerned. This is a source of frustration for all involved. The doctors do not know why she is having such difficulty-her lungs are not that premature (as she was born at 33 weeks) and they also do not feel that pulmonary hypoplasia is the problem. If the issue was hypoplasia it would have been a factor early on, not a reason for worsening status.
Her CRP continued to increase this week leading Dr. Pryhuber to think she may have a lingering pneumonia that has not been effectively treated. She is now back on two more antibiotics. She will have a repeat u/s Thursday to check her kidneys for fungal lesions. There is some disagreement about whether she actually has a fungal infection or if the lesions are artifact.
I was able to have some extra time with Natalie this afternoon thanks to some Grandma Karen babysitting (thank you!). We enjoyed hand holding and I covered her head with my hand in an effort to block some of the noise. As I was getting ready to leave she woke up and it was wonderful to see those beautiful eyes again. I was able to get my face pretty close to hers and she would focus on me for a few moments and then look around. She is so alert and behaves just as a normal newborn.
They have continued to increase her feedings so she should be at full feeds tomorrow. There was concern about her bowels being slowed too much by the sedatives she's on so a prescription was written for suppositories. Natalie must have heard them talking because the diaper I changed today (right before she was supposed to get her "shave" of glycerin) was loaded. She had not had a BM for days so I was thrilled. I had to restrain myself from high-fiving everyone in the pod. Good nutrition and growth are the keys to healing BPD so having her back on her regular diet is very good news.
Tonight we had our first sit down meeting with her care team so that everyone was on the same page. Honestly it was emotionally draining and I need to process it all before I can write about it. We are both here in a bit of shock trying to feel our way through this.
Natalie's doctor says her brain, heart, liver, kidneys and digestive system are all wonderful. It is only her lungs that are an issue, and she says to never give up on the lungs. I will add to never give up on Natalie. I am going to hold on to that as we once again try to pick ourselves up and find new strength to go on.