Today Grace's team said the plan for her was to have a boring night. Dr's orders! I sure hope that's what she's having!
Monday morning Grace had been desatting for over an hour, but it wasn't anywhere near as low as it had went on Sunday morning. But they were down into the 70s consistently and they went up on her vent settings and gave her more sedation and they were still desatting. Even though they weren't extremely low it was so upsetting because she needs to keep her sats up on the vent, we no longer have ECMO to live for her.
Someone asked how she did if she was hand bagged, which she hadn't really been much. So they said why not try it and see what happens? So the RT (respiratory therapist) who I really like, Delaney, started on it. Grace was fine. Her oxygen went back up into the high 80's and a few times hit into the 90's. Still not 100 but much much better than what the oscillator was giving her. When Grace was put on the oscillator she was not extremely sedated and she got really upset. I really think it scared her. I know she's sick and I know that she's not a "normal" newborn but she is still a full term, 3 week old baby. she still can get scared. And the reason why she was put on so many drips and PRN's to keep her paralyzed was because she could not wake up on the oscillator without raising her blood pressure and dropping her sats. I always thought she simply hated the oscillator and was freaking out. Well someone else (I had slept in the waiting room for about 3 hours the night before so I am not sure who even decided it) made that connection as well and said "she doesnt like the oscillator" and they got her a conventional vent and she's been on that since Monday around 6 am! She is still on Nitric but is doing well. Her settings are pretty high still and do need to come down but they have weaned a bit today and she has tolerated it.
She is having a somewhat hard time with her temperatures. She keeps getting hot and then cold. they aren't sure if she's developing an infection or what is going on. She has been on an antibiotic since she got there though, so the likelyhood is low. I think it's because she hasnt had to do it herself in 3 weeks, ECMO did it for her and she's not used to it.
She is still paralyzed, hopefully she can start waking up more tomorrow the next day. I love seeing her beautiful eyes, even if it's just for a few minutes.
This weekedn was really hard, it was hard to see the light it was hard to not think the worst was happening. We were told as soon as we got to Mott that there would be ups and downs and to expect them but I never ever imagined that the downs could be so incredibly down and hard. And that the ups would be so small, but so big at the same time, if that makes any sense. But when I think that last week she was completely supported by ECMO and this week she is not, well that is a step in the right direction. Even though she still has quite awhile on the vent, she's just on a vent and not a vent and ECMO. It's baby steps and I have got to realize that and take it for what it is. I think I have alot of trouble with it, because 24 days ago I had never even heard of CDH, I never knew such a horrid defect existed. Let alone what it entailed. When she was born they said "oh they see this often and fix it no problem" and then the first dr who talked ot us at mott said that CDH babies go home anywhere between a few weeks or a few months and that he thought we could expect weeks not months. So to know that we've been here weeks and we have MONTHS to go, is hard since we never expected any of this.
Adam and I are both having a hard time lately because Grace is the only baby in her room who cannot be held and who cannot be awake and who cannot be touched even sometimes. She is the only one who cannot interact, the only one who is not fed breastmilk or formula, even if just from a tube. It is really hard to see all the other babies making progress but her's isnt so drastic. Well none of those babies have CDH so it's not the same. It's just very painful right now. We would give anything for her to have her eyes open and to hold her. Oh to hold her would be the most amazing thing in the world. but we can't and everyone else can but they don't even come visit! So many things we don't understand right now. And we probably never will.
So please pray that Grace has a boring night, that we could not see the other babies and feel upset. Pray that Grace can start waking up more in the coming days and that we might be able to start talking about getting her chest tubes out and her intestines put back inside. She has a long long road ahead of her but she is so tough, she is such a fighter. Nobody works with her without commenting on her sass and spunk! She's an amazing girl for sure.