He keeps pushing Berkeley so hard and her oxygen needs increase and she becomes so exhausted she can hardly open her eyes, let alone get a full feeding. He tells the nurses that we better not be here when he comes back in 3 days. He wants her off oxygen when she gets home. I don't see how that is possible since this morning she de-sated in less than a minute and started to get dusky when they tried her on room air.
I want to get home too!!! I want my baby home! But I also want her home when she isn't going to wither away, or have brain damage from not enough oxygen.
It honestly feels like he is having some sort of power struggle with me. I feel like it is really working against the kind of care that Berkeley is recieving. I will continue to try to be kind and friendly and respectful to him. I also have tried to build his ego, and let him know I am baffled about the eating situation. I need his expertise etc. But I can't tell him I baffled about her secretions.
I called our ENT and set up a consult about Ellery and Berkeley. She is out of town at continuing education classes. But she had just called her nurse, excited. She thought maybe she had run across another possible explanation for my children's symptoms. My call was timely. When she returns we will meet with her. I am anxious to hear her ideas. She is one doctor who is thinking at least about her patients, and trying to figure out things she doesn't understand. I appreciate it so much.
We are starting a 24 demand trial. She doesn't have any minimums, she just can't lose weight. She is 5 lbs 13 oz. If we make it, they will remove her NG tube tomorrow morning and then we will have a 24 request period with no test weights. Finally we will have a rooming in night, on the home oxygen equipment and monitors. If all goes well we could be home Saturday morning, or maybe we could combine the 24 request and rooming in and come home Friday.
I came in this morning and Berkeley's nose was all bloody, the nurse last night seemed to do quite a number on her. We have had some absolutely fabulous nurses in Nursery B, it makes such a difference. But then we have some which unfortunately seem almost incompetent. Of course I am very fussy, it is my baby. I want to be caring for her 24 hours a day!
The green Hawaiian sundress you see popping up in all the photos recently of Callista has caused quite the stir. When she put it on for the first time this summer (a few days ago) Emmett was enamoured.
"Ohhh Nanni! So pretty! So pretty. Ohhhh!"
Both Callista and I felt our hearts melting. She kept saying thank you Emmy and he just kept smiling and touching her and telling her how pretty he thought she was in her green Hawaiian sundress.
Emmett, bless his little heart is very particular about clothing. In fact, the most fussy of all my children. He searches through his closet for his very favorite outfits, and wishes he could wear his clip on tie everyday of the week, because he is so handsome in it.
Brent thought it would be fun if the children pretended they were monkey's and hung out in the apple tree. Ellery was the only one semi-brave enough to try.
Berkeley had her first "tubby" last night. Let me tell you, it was a true spa experience. These nurses know how to do it! I thought I knew how to bathe a newborn, but I had no idea.
Berkeley moved rooms today. (My heart dropped when I walked in and didn't see her. Luckily the nurse found me quickly and sent me in the right direction!) She now has a great view of Provo. We made a decision yesterday to hide these very specific posts on Berkeley's health and our hospital experiences. It was the recommendation of the Geneticist and my mom, and what Brent and I felt best, to keep things a little more private, as far as our children's health is concerned. I also do not want to jeopardize Berkeley's care with any of the emotional things I say on my blog about the hospital personnel.
Berkeley had a great day yesterday with lots of improvement. Her flow is down to .5 L and the Oxygen level today is down to 26%, with yesterday up and down but mostly at around 50%.
Our poor little Berkeley Rose took a few steps backwards. I had been so emotionally strong up until this point. But to see my 4 day old baby back on C-PAP was more than I could handle.
We are just waiting for her to mature a bit. Her gestational age appears to be a couple weeks behind what the doctors calculated.