I'm going to try and give a coherent update on Adeline but no promises :) It's amazing how while trying to learn the life of living in the PCICU, you lose basically all connection with the outside world...I don't know what day it is, what's going on in the real world, and don't even ask me about trying to call people back. Trying to manage the chaos of the MUSC cafeteria at lunchtime just about did me in today!
Adeline is doing amazingly well, and we hope that she continues with her strength. It is so reassuring to hear from doctors and nurses how well she's doing and that she has not needed any assistance with breathing and is just on a few medicines right now. She will receive a PICC line at some point tomorrow to establish a more permanent access line for medications and this will require anesthesia so that will be our first experience with a procedure. Please pray that she tolerates everything well and that the PICC line is quickly put in her.
She was moved to the PCICU (pediatric cardiovascular intensive care unit) Sunday night. She has more room there than in the NICU, and they have her swaddled so she seems happier. She definitely enjoys sucking away on her pacifier. She received her Annabelle's Basket full of goodies which is given through the generosity of a family who started an organization to give out baskets to all babies in the PCICU in memory of their daughter, Annabelle. So she now has a pink bow on her hat and is snuggled up to a pink Minnie Mouse.
We still don't know the plan for her surgery. Hopefully we should know something tomorrow, but we are waiting for the big meeting with all of her doctors. We're anxious for surgery and to get it behind us. I continue to look at her and can't believe that she's actually my daughter. She's just beautiful (yes I know I'm her mom) and when she's awake, she seems to be taking everything in. At times I do want to pick her up and run out the hospital doors with her, but I know that she's happy and comfortable where she is, and most importantly, she's receiving amazing care.
Andrew and I are working on establishing a routine at the hospital, and it's a difficult life to adjust to. We're getting there - as long as I don't continue to get lost in the hospital! I think we're both slowly overcoming our fear of listening to the beeping of monitors as that's all we listened to the night before she was born - the beeping of her heart rate as we prayed it wouldn't drop anymore.
My parents are still here and have been a great help with getting us settled. Andrew's parents left yesterday, and they were a huge help as well. All of Adeline's aunts, uncles, and cousins were down here for her birth which made it really special. It was very difficult when I was discharged yesterday to leave the hospital without our daughter. As much as we were prepared for this, it still didn''t feel right to leave without her, but we will take her home soon enough. It was strange to be back at the house last night - there were moments that almost seemed "normal" like we were just back at the house and then I would remember "oh yeah, I had a baby but she's still at the hospital."
Adeline is such a blessing and a miracle. She continues to prove that she is a fighter, and her heart makes her even more special. As I looked around the PCICU today, I realized how every baby was another one of God's miracles. Thank you so much for all of the continued thoughts, prayers, and love as we continue this journey. The prayers are definitely working, and we know that there will be many ups and downs ahead.
For those of you looking for more photos of Adeline, here are two albums Andrew uploaded earlier. To see the entire albums, just click on the photos below.
|Adeline Day 1|
|Adeline Week 1|