|Sleeping-Clara prefers no clothes |
and few blankets. She runs warm,
just like Grandpa Wallace and
Oh, except not so much. We gave her some formula in a bottle, got dressed and waded through rush hour traffic. We got up there at 8:15AM. They thought they would get us in by 9:00AM instead of our 1:00PM scheduled time. And then it was around 9:45AM, and the cardiology NP came by to check on us and Clara. They told her and us it would be 11:00 for the study. The NP felt like Clara was doing ok, to just give her a small amount of food (1-2mL) while we waited so she would be hungry for the study. We decided to also go for a drive to keep her calm and get Todd and I some breakfast. When we returned, they still weren't ready for us. During all this time, we had seen (and met) several families going in and out, made friends with other patients, and Clara had been so patient. But as the clock was getting close to 12:30, and I had hardly been allowed to feed Clara, and she was getting more upset, I joined her in some tears. We had rushed out the door, waited in this uncomfortable, germ-infested waiting room for over 4 hours, and we ended up having the study done about 20 minutes earlier than originally scheduled.
And then, she passed the study with flying colors and our whole world changed, and I was no longer mad at the hospital! I'm easy that way. They replaced her NJ with an NG tube, which is much lower maintenance. And we had approval to give her food orally, all of it that she could handle, with the tube being in place as a back up as well as for nights so we don't have to wake her to feed her. Oh, how much happier she was to get food directly to her stomach!
The following day, we met with cardiology for a post-surgical follow up and got more good news-Clara no longer needed to be on oxygen. She was untethered, and we were finally free to move (her) freely about the cabin! I could hold her while I get up to grab my ringing phone, or finally take her in to her nursery, or just take her for a walk without an act of congress and a million tubes and things! It's like she's a real baby! She has continually beat the odds and progressed faster than we ever hoped, she is amazing!