(I typed most of this on Sunday, hence the Day 17)
Where do I start with our little one? We met with Dr. A. yesterday, one of her neonatologists. He said she was doing really well but he was concerned about her pulmonary pressures. After a repeat echo yesterday she was still in the 40's with her pressures. They should be in the 20's. He talked to us about the seriousness of the issue and that it can be fatal if left unaddressed for a period of time. Basically, she has pulmonary hypertension. She responded positively to the nitric oxide but they also wanted to discuss the option of oral medication. As expected, they would give her Sildenafil, which is better known by the name viagra. It is commonly used for pulmonary hypertension. It has not been that studied with CDH and he said there is some concern about long-term use and hearing loss, although none of it is conclusive. He said we had time to discuss it because they would not start it right away and he also wanted us to talk to the cardiologist first. She had been sitting around 30% air since extubation which was not bad but was not the greatest. My thoughts of her being able to lose the nasal cannula were shot when Dr. A. mentioned she could be sent home with oxygen.
Fastforward to last night. I went up late to spend time with Liviana and begin some non-nutritive nursing sessions (more on that later). As soon as I picked her up and began our practice session she began satting high around 99/100. That means that her oxygen saturations were 99 and 100%. They came in twice and turned down her oxygen. She ended up at 28%, she was at 32% when I got there. When I left her sats were still at 97 and her oxygen was 28%.
When I came in today a nurse was rocking her. Her oxygen had already been turned down once and got turned down two more times while I was there because of high alarms again. Dr. A came by and told me that he was thinking of giving her Nitric Oxide through her Nasal Cannula since she was still sitting at 30% and they would have time. I said, "well, she is actually closer to 21% now (which is room air)". He took a look and sure enough, she was at 23%. He was pleasantly surprised and said that he guesses he will have to change his plans and nix the idea for nitric oxide. He is hoping this is a further sign that she is still healing and improving and maybe her pulmonary pressures will follow on their own. He has ordered another echo for Monday. He is holding off on any decisions about the Sildenafil until the echo results.
He also gave the go ahead on Saturday for non-nutritive nursing although he said he would be fine if she got just a little bit. He said he would anticipate starting real nursing sometime this week. Liviana is now on every 2 hour feeds which is helping get her used to how she will be nursing. I am worried about my time availability to nurse her as often as she will need. She will end up taking a bottle many times since our sitter is not available all the time and I won't be able to be there.
She got her arterial line removed, which is great. She is just down to her feed line, which is disoonnected between feeds and her monitor lines (heart rate, respiratory rate and oxygen saturations). She is so easy to get in and out of the bed and cuddle and hold. Sunday night when I was holding her the nurse said her saturations immediately go to 99/100, her respiratory rate goes down and her heart rate goes down. She knows her momma.
She has been on room air now since early Sunday although she is still getting the 2 liters of air flow, she is not getting extra oxygen. When she gets upset, or has a spit up, she still needs to get bumped up to 23-25 or so for a short period of time.
She was more awake on Sunday than she has ever been before. She as so bright eyed and interactive. It was a wonderful time with her but it is also making it harder and harder to be away from her so much. We need to get our little girl home so we can all be together as a family.
Liviana has a mobile over her crib which she seems to like watching. I asked yesterday if she could use a bouncy seat or something similar to help her sit up and observe her environment more. They are going to have the Developmentalist bring something down for her.
I can't get to the hospital until 3pm today (Monday) because our sitter is working. Brad will try to get up there between appointments to spend time with her. It is going to be a long, hard day away from her but I'm sure I will call and bug the nurses for updates often.
Little Kelly is doing better. Thank you for keeping her in your thoughts. She had her eyes open yesterday and it sounds like things are improving.
Thank you for your continued thoughts and prayers.