My little darling knows what she wants and knows exactly how to get when she wants it. However, being at the hospital still she is not able to get what she wants when she wants and that makes her sooo very angry. I need to get a picture of her throwing a fit so all these "Little Angel" pictures don't mislead you! :) She is doing well. She is off her fentanyl- again, and doing better without than she did the first two times. She is a little cranky for sure, but I'm assuming the drs are confident because they took her PICC line out today!!! YIKES!! She is line free- all except her monitor lines- heart rate and respiratory rate- She is eating her 60 cc TODAY- who knows what she'll do tomorrow, but to me she seems hungry still after eating the 60- maybe they will up her seeing how they say she needs to be eating 90 cc! (3oz)
Yesterday was a very frustrating day for me- it was frustrating bc Kayla was having a bad eating day, and she was sleeping a lot- made me worry! But then I felt guilty for feeling frustrated because I am so blessed... and I just couldn't stop crying bc of the frustration I felt and bc of the guilt I felt for being so frustrated- it was a never ending cycle! So I left Kayla at 3 yesterday and drove home for the night. It was nice- my husband and some wine calmed me down quite a bit. But before I left- I was talking to some mom's at the hospital - one being Charlie's mom- and I wanted to thank them for listening to me whine and cry about my frustration and for not judging me for feeling that way.
5 comments:
It's okay to be frustrated! None of this is easy and if I were in your position I would certainly be frustrated too!!! Thinking of you guys and glad Kayla is doing well!
Hello, I just got your blog and wanted to introduce myself. My name is Fer and I am mom to Juan Pablo who will be 2 years old this june and is a CDH survivor. I wanted to tell you that I am praying for Kayla, who is absolutely adorable!
Fer
Hi Kate & Kayla,
Just a short note to say hi, and we r all thinking of u guys. Kayla is so beautiful as if u didnt already know. We check the blog everyday to see how everyone is doing. We can understand your frustration or try to, but u guys r strong, Kayla has shown us all that. Cant wait for u all to be home together. If u need anything just ask.
Love Uncle Larry Aunt Terry
Kayla is adorable! Praying that Kayla is wireless soon. Thinking of you.
What wonderful news about Kayla Mae and for you Jerry and kate. I was not able to be near the computer for a few days but when I read the blog last night I was so happy. Then I heard the most wonderful news of all. You are all home together as one big Happy Family.I am so happy for you all. You have a beautiful baby,that takes after both her parents. I can't wait to see the little one. In the mean time you keep up the good work on keeping her well and safe. Pictures will do for all of us for now,so keep them up. My Love to the 3 of you .
Aunt Sharon
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