We're Wireless!

We knew Clara was an original, but we had no idea how far she would go to prove it. We ended up at Primary's a total of 5 times in 10 days because of blocked NJ tubes. On the 4th visit, the doctor just shook his head and told me he was so sorry-this isn't normal, it doesn't happen to most people, we were doing everything right, and it sucks that we just had to keep replacing this tube. It was a relief to have someone validate us that way-we couldn't do anything differently, we would just have to keep replacing when we couldn't get it unclogged. Poor Clara.

Sleeping-Clara prefers no clothes
and few blankets. She runs warm,
just like Grandpa Wallace and
Aunt Sherrie.

The 5th time the tube clogged was just 7 hours before our swallow study was scheduled to take place, around 6AM.We called the on-call cardiologist to see if we could just give her oral feeds until it was time for the study. We didn't want to go in and have the tube replaced as we felt there was a strong chance she would past the test and get moved to an NG tube. We were trying to reduce the number of x-rays she would get in such a short period of time. The doctor was concerned about her not having enough food during the intervening hours, and he advised us to head up to Primary right away. He would leave orders for radiology to get her swallow study moved up as soon as possible. Hooray!
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!