It has been another week for Arlyn's success. We visited Cardiology the beginning of the week and she looks great, they increased her feeds and it was a struggle and we backed back off a bit because she started to vomit more. I am happy to say that overall this weeks Arlyn has made progress with her feeds, generally taking 30ml-40ml in a bottle and finishing the rest in her NG tube. I was very proud today when Arlyn took her first bottle all by herself at 2100 tonight. I was pleasantly surprised because the last few days she has gotten a cold, no fever but a pretty nasty cough and i have started intermittent chest PT because she sounds a bit congested in her left lung. I am hopeful that this will clear and we will move forward in a few days. She has really slept a lot today, more than usual and overall eaten less but I feel her priority is to eat, grow and heal.
On tuesday night Arlyn gave me a scare and pulled out her NG tube a little bit but I was able to place it back in quickly and rescuer it. I love this little girl so much but she has definitely put me in a position of sleep deprivation this week. She is quite alert during the day and during the night she hasn't felt good so she has wanted to be held and awoke more frequently. We went down to bowling and hung our for 1 hour just to see everyone and let them meet Ms. Arlyn and we were so overjoyed everyone could meet her.
This week with the boys we were able to celebrate a bit for Calogeros birthday, Christian and Luke both wanted to decorate a walking dead cake for Calogero. I was really happy to enjoy all of my children this weekend but also a reality to how difficult it can be with a special little girl like Arlyn
No comments:
Post a Comment