Emily was put to the C-pap on Friday. The doctor says that this is one final effort to having her not be trached. I believe that Emily is close to not needing to be trached. She does many things that normally put a baby down that route, including breathing on her own and being of the vent for 2 + months now. She clearly can do what she needs to do, but she can’t keep the pressure in her lungs to help her breath. Which is a small but vital thing to do.
So on Friday they tried her on one machine (it was actually the last vent that she was on) to give her pressure support via C-pap. They were not able to give her the pressure support (limitations of the machine not Emily) that they thought they could give her and since she had about 2 inches hanging from her nose they put her on the conventional C-pap machine. She seems to be doing well on it. Her oxygen has been able to be weaned, albeit slowly. Yesterday it was around 95% and she was statting in the upper 90’s, though they did have her as low as 85% at one point. I don’t know what they were able to do overnight.
One thing we are not happy about is she has stopped taking the bottle. I talked to the doctor prior to her starting the C-pap and he told me that he didn’t want to stop her feedings (by bottle) for that long. He was thinking that she could go back on the high flow cannula for feedings and then go back on the C-pap machine, that is if she couldn’t handle them well on the C-pap. (It is hard to eat on C-pap.) This was my understanding all the way until yesterday’s 4 pm feeding when the doctor said that the doctor on service said that she can’t take any bottles till Monday at the earliest. To say this makes us mad is an understatement. We know that she needs to be bottle fed. She is 45 weeks gestation tomorrow. They keep telling us that she may loose her sucking reflex if we don’t feed her yet they think it is okay to leave her like this (mad and all since she like eating from a bottle) for 3 days! Tony and I have our own opinions about the doctor who was covering for yesterday and we are trying to keep them to ourselves. Last time this happened though it took her 3 weeks to recover to where she was before they stopped letting her take the bottle. I guess we have g-tubes in our future (a tube to put food directly into her stomach).
Emily is tolerating the c-pap as well as she can. She doesn’t like it but she does okay with it. We have noticed that she is awake a lot now and then crashes and “power naps.”
That is about all for now.
Have a Merry Christmas!
Jennifer
I hope that when you got to the hospital today that Emily is doing better. I’m so sorry that you all have so much to deal with. It would be nice if all the doctors were on the same page! I will pray for peace for you and Emily today and for her to be able to celebrate Christmas at home soon. Take care, Rowena
My family is still praying for Emily. I hope your family had a wonderful Christmas. Have the doctor’s talked about getting an occuaptional or speech therapist up to work with Emily on her eating. That made a world of difference for my daughter although she still did end up with a g-button.
Just wondering how you guys are doing. We are praying, praying, praying!
Sonia