Lowell and I this beautiful Sunday morning sitting out in front of the Ronald McDonald House waiting for the shuttle to take us to the main entrance. It was such a nice morning with the sun shining. I could have sat there in the sun all day. Just made me thankful for God's beauty all around us.
This is our room at RMH. So blessed! They said they'd bring in cots if we needed more beds. Later on I'll have to write about this place. Quite amazing really. Makes me not feel so guilty eating at McDonalds to support them. ;o) (It's their fries that I just can't resist...)
This was our last few minutes in the Pediatric Intensive Care Unit (PICU..."pick you") before being taken to 3rd floor's Neonatal Intensive Care Unit (NICU..."nick you") for her step down room since her heart was so stable.
Just arrived in the NICU, getting ready for the doctor and nurse practitioner to check her in by running all her vitals and measurements and tests for their records. She had the feeding tube put in her nose that morning since she was struggling with sucking and swallowing. The heart doctors need to have her eating a set amount of milk and regulate it for surgery. I was able to bottle feed her twice with what I had just pumped to help her learn. :o) She could only get a little in her mouth and then I had to pull the bottle out to let her swallow before going on. She couldn't figure out how to suck and swallow simultaneously. Since her episode last night, she is not feeding and is back on an IV I think until surgery. Things keep changing in here, so you never know.
Thursday after lunch when I came back to the NICU to see her settled in, she wasn't looking so good. She was jaundice and her birthmark across her eye lids and nose was showing up really dark. This wasn't her best moment, but I took one of her anyways.
Dr. Rajabi. He stopped by Thursday afternoon to check up on us and see how we were doing. Very, very nice of him. He was so happy that Cayla had been doing so well when most babies in this situation aren't. He even agreed with me when I gave God the glory and credit for this miracle of no Norwood surgery. He couldn't deny it and didn't even try. He and all the staff at Hillcrest have just been so above and beyond in their care that it just makes you feel special. God has given us great doctors through this whole process. For those who asked me to tell him thanks for taking such good care of me, I did tell him and he smiled and said that he just had a good patient who did everything he said to do. Apparently not all do. :o)
Friday night, my in-laws came and brought Lowell up for the weekend. They weren't coming until Saturday, but surprised me by coming in on Friday night! :o) Grandma and Cayla have some kind of connection going on because every time she holds her, she's awake and focused on her and they're sharing secrets with each other or something... :o) So precious! I guess by the time she gets to Daddy, she falls asleep on him. :o) We are all so amazed she's ours and so beautiful and so, so precious. Daddy's heart has been stolen big time by little miss Cayla Joy. :o)
These last 3 pictures were taken today after she'd been put in the incubator. She now has a breathing tube down her tiny little throat and an IV back in her umbilical cord. She was on a lot of medication today and hardly woke up which is good, since I'd hate for her to be awake and so uncomfortable with that big old tube. She's been stable all day today. They do not have the breathing tube in because she's having trouble breathing, but to lessen the work her body has do right now, so she can put more energy into her heart to pump blood. Don't know if this will stay in until Wed. morning's surgery or not. I guess we'll find out tomorrow.
Well, there's some of the latest updates. It's 11pm. Time to pump and go to bed. :o) Thanks again for all the prayers for us and our precious Cayla Joy. God is faithful!