The Floor

We rushed up to the hospital on Thursday to see our baby girl-she was in a room in the surgical recovery unit and it felt like such freedom. We held her, changed diapers, tickled her toes, and laughed at her cries (they were so unconvincing, and she feel asleep half way through any little tantrum, it was too cute!)

Our first sleepover!

The nurse reminded me that there was a 'bed' in the room if one of us wanted to spend the night, so I ran home to pack for our first slumber party! I learned so much that night about how to give Clara her meds through the NG (feeding) tube, how to feed her manually through the tube and I got to burp her when she was having some reflux. I also got no sleep, but had such a nice time visiting with our favorite nurse (Sara) when she came in to cuddle with Clara. Early in the morning, they have a routine that is followed each day for these heart babies. They strip them down, weigh them, measure their tummy girth, and take them down to get x-rays to check their hearts. Clara made sure to make her feelings known the first day by peeing in the nurses hands as soon as they stripped off her clothes and diaper :)
When she returned from the x-ray, the nurse practitioner checked her scar and chest tube output (better!) and the doctors did rounds. I talked to Dr. Su and got a bit more information on Clara's thymus-mostly, that they still hadn't tested for antibodies but would before she was discharged. So either the hospital was being neglectful (I doubt it) or we were overly concerned by the information we had received and didn't need to worry so much about germs as we thought. Good news, I guess?
I went home and showered, checked on Todd who was passing a kidney stone again, and headed back up to the hospital with my brother Nate and sister in law CC. We just spent a few relaxing hours watching and holding Clara-pure magic!
On advice from a few of the nurses, I decided not to spend the night anymore. I was still recovering from the c section and trying to pump every 3 hours. Trying to sleep on that hospital couch in her room was not contributing in a positive way to those goals, and the nurses were so kind and loving with Clara, that I had no qualms about leaving her in their hands at night.

I'll give you a MILLION
dollars to keep those tubes
off my face!

Saturday's visit was a little less smooth. One of Clara's tubes (the NG/feeding tube) would be coming home with us and we had learned to use it to feed her and give meds. The last step was to learn how to place it if she pulled it out. This tube goes from her nose down her throat to her stomach. It doesn't hurt, but is irritating to have removed and replaced. Do you see where this is going??
The nurse described what was needed in order to replace the tube, and I volunteered to try it. I'm a dummy that way. So she removed the old tube and oxygen, and we snapped a few photos before I had to try to stick this tube up her tiny nose. The nurse had warned me that her nasal passage was extra small, that 22q babies tend to have small and even sometimes misshaped anatomy in the ear, nose, throat areas. So, thanks for that additional hurdle.

We put a lubricant on the end of the tube, I took a deep breath, and I stuck it up her nose. The nurse reminded me that I might have to push the tube a bit to get it through her tiny passageway, but every instinct I had was "don't shove stuff up your kid's nose, you'll hit her brain!" I think all the time I spent in the British Museum learning about Egyptian mummification processes contributed to this inability to perform this action properly. The first attempt was not good, we took a break, tried again, failed. The nurse tried the other nostril, it was even smaller and she got a bloody nose. At this point, she and I were both in tears and the kindly nurse finally took over, placed the tube properly, and assured me that if Clara pulled it out at home, we could always bring her up to the clinic to have it replaced. I hated that I failed this step entirely, but could not help feeling relieved that I wouldn't have to try that again while she was so little. If she still has the tube when she's bigger, it should be easier to place the tube as her anatomy grows. Whew.
I felt so bad for picking on her for so long, that I spent the rest of the evening cuddling her. We had Todd's family up to visit, and I just couldn't yet find it in my will to let anyone else hold her after what I had put her through. I felt guilty, but wanted to make it up to her by keeping her in my arms for the remainder of my visit. I even skipped pumping just to keep her close to me, I felt so bad. How to parents survive all the hard things their kids have to go through without just coming apart? Poor Todd, I guess my crying wasn't going to stop as soon as we hoped :)