Remove the breathing tube, start and maintain feedings, start treating the withdrawal and start taking medications orally, remove her urine foley, and hold my baby girl.
Overall, all of our goals were met which is huge! Yesterday we had a minor setback with feeding. We think we may have gone too fast on her feedings. We had gotten up to 10 ml per hour but it affected her tummy and therefor her breathing. She started working way to hard for her breaths so we turned off her feeding tube and took an x-ray. The upper part of her right lung had collapsed again and she had some fluid in there.
Of course all of this happened while I was holding her, but they said it was just a coincidence (I am not sure if I buy that or not, but I thank them for saying it ;)). Regardless yesterday I got to hold my baby girl for 2 hours. It was wonderful!
Today's x-ray showed that her lung was no longer collapsed... we are still very wet which they increased her lasix again so hopefully she will pee pee it all out. As I am typing this, Dustin is holding her and she is doing great.
Because of the incident yesterday, they have kept her status for a transplant at a 1A mainly due to the pause in feedings.
All in all, it has been a wonderful weekend! She is still of the ventilator, we are peeing in diapers, as of right now we are feeding (though not much and super slow!), she is taking her medication orally and we are weaning off the methadone and valium, she is sleeping in a crib and is swaddled.... and we have both been able to hold her!
Here are some pictures from this weekend!
Dear Children, We are so happy for you. Holding that precious baby must have felt like heaven for you. We are holding you close to our hearts and praying for you constantly. Everyone we know is praying for all of you. Stay Strong...Love to you, Gram and Papa A.
ReplyDeleteShe looks beautiful and it is sooooo wonderful to see y'all holding her......I bet she is loving it!!!!! Will continue to pray daily for her to keep healing!!! XO
ReplyDeleteI have been reading your diaries every day. I am inspired by your strength and optimism. You are an inspiration and role model for us all. No life is easy, it’s how we choose to react and deal with it. Through adversity, one becomes stronger. Thank you for sharing your story with us. You and your family are in my thoughts. Keeping the writing coming. It’s not only therapeutic to you, it’s helping us too.
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It is so wonderful Jess and Dustin, to see you holding your little girl!!! I know she feels your love even when you cannot hold her, and draws strength from both of you because of the love you have. She looks so peaceful........and BEAUTIFUL. Sending prayers and so much love your way.
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