Backtracking - Day 82

Sleepy Ellie 

I wanted to write this for two reasons. First I want to remember what happened this morning, and second I know when people know what is going on and pray for us it makes a difference in Rex and Ellie's conditions.

Eleanor has been doing so well with breastfeeding and not even needing extra oxygen support during feeding. She was doing so well that yesterday Dr. McGill gave the ok to move her to a low flow nasal cannula and bump her down to one liter. She did fine with that change and was able to stay at 21% oxygen. I nursed her last night after 9pm cares and put her back to bed. I felt so proud of her for all she had done that day and people were even talking about her being out in two to three weeks.

Well last night around midnight she started to have more events and her oxygen needs started to rise. They evened up putting her back on a high flow nasal cannula and trying to get her to stabilize throughout the night. This morning during report (when our nurses change shifts) she had a pretty big event and the doctor ordered a full blood work up to check for any possible infections. Then when I got there this  morning and was holding Rex, she had a significant event where she had to be bagged and her saturations dropped down to the teens. I don't really like to talk about these things happening because they are terrifying for me, not to mention terrifying for Charlie who isn't here right now.

After her event Dr. Ilg ordered for her to go back on bubble CPAP and she got a treatment of Xopanex to help open her airway. Her labs finally came back and everything was within acceptable limits. This was great news because a bacterial or viral infection can be very serious and a huge setback for her. Dr. Ilg ordered more blood work for tomorrow morning. When he examined her he commented that she looked ok to him (besides not being super pink and more of a dusky blue color). I told him that my gut feeling was she is tired from eating orally and switching to a low flow nasal cannula yesterday. So for now we are just giving her a break, no holding today and no nursing. She is on CPAP right now and Dr. Ilg is hoping to get her back to a high or low flow nasal cannula tomorrow.

The thing that really breaks my heart about this is that she is still giving all the signs that she wants to eat orally and we can't reward her! She is used to being able to open her mouth and now with all of her CPAP head gear she can't. Her cute little face is squished and she gives all the cues she is hungry but she can't eat orally right now. We are grateful that her labs came back clear and are really hoping all her labs in the morning look the same or better. She has made such big strides and we are hoping this is just a minor setback.As terrifying as it is to have so much to lose its wonderful to have so much to live for.