Today is a 'setback' kind of day. Today we received the news that Abby is back on CPAP. I'm angry but not surprised really. I have mixed emotions about the whole thing. I am relieved. I am scared. I am pissed off. I am sad. I am overwhelmed.
Holding Abby has been challenging with her breathing spasms. In order to hold her and for her to be relaxed and breathing at 100%, she had to be asleep with her head tilted all the way back with her body facing toward you and kind of down. Awkward and not very comforting to watch to say the least. While in her crib, she has to be on her side. If on her back, she desats and her windpipe gets blocked and her breathing becomes jeopardized. As a mother, this is awful to experience. I am always on edge holding her, watching that darn monitor and worried shitless if and when it will beep again. The nurses try to reassure me and say she's doing great, but this is not quality, at least in my opinion. I have been noticing that she has been struggling for the past week and expressed my concern with the doctors at our family meeting and they told me to wait and see the results from the sleep trials. Her sleep trials got bumped up early and happened on Tuesday night. We are waiting to receive the results from that and I hope we receive it ASAP. But in reality, it takes a week and won't be until next Tuesday. I am impatient and this is challenging, waiting, waiting and more waiting. Sigh......
A big "sigh" along with you!! I can imagine how difficult and uncomfortable it must be as a mom to watch your baby struggle to breath. I hope you get some positive results from the sleep test. Keep your chin up...Abby has proven she's a fighter!! You all are continuously in my thoughts!! Hugs!
ReplyDeleteHang in there mama! I was in your shoes. Its hard and frustrating and yes you get angry. It seemed like every step forward was 2 steps back but I had to let go and say "I'll take Braden anyway I can get him and let him figure out how he wants to ride this out." I was angry when the doctors said he needed a trache...and now I'm not sure if I was angry or more scared and doubting that I would know how to care for him. It turned out to be the best thing for him and I just had to decide to let things unfold at his speed and do what felt comfortable for him. Its hard but it will get better and it sounds like you are in good hands where you are at. I pray for you and Miss Abby every night. Im sooo impressed with how well she has done tho off the CPAP. You have yourself one tough little girl!
ReplyDeleteHugs to you and your family!