Children's Hospital Day Two

Today was quite a challenging day. They woke Ruby at midnight, 4am, 5am, 6am and then we were up for the day. She probably figured as soon as I fall asleep they will wake me again anyways.

The medical staff did rounds at 9am which means 15-18 doctors and students came into her room to discuss her. They are all fascinated by her and puzzled. I want to know why she's loosing weight when we are feeding her more and exactly what foods her body can tolerate. The summary of the rounds was they were not as concerned about her GI system as they were why is she so small. So genetics was consulted.

The speech therapist had lunch with her and trailed milk (the one thing we were told not to give her-but what a better place to trial these things). She did not like it at all and whenever we would try to sneak it in or on her spoon with the mashed potatoes, she would refuse it. She is a pretty smart little cookie! Speaking of cookie, she ate a chocolate chip cookie today too. Probably the first ever. I figure if she is to try foods, lets do the ones I like best. They were out of apple pie though.

The genetics specialist came to see her and ordered so many different tests. From urine to blood, x-rays and ultrasound, and then more blood. She had 4 pricks from lab today. She doesn't like any of the tests but during the X-rays is when I broke down. I have been strong through all of this but when you see your little peanut that is just beginning to like/love you taped and sandbagged to the table and screaming "mama" for the first time and you cannot do anything about it, I couldn't hold back. The poor radiology tech...and then the nurse when we got back to the room. I have to say through all this pain and scary stuff she is going through, she is finding immediate comfort with me-which is good for bonding. I only wish it wasn't this way.

She continues to eat very well and frequently. She only consumed 4 ounces of liquids today, which is a big concern to all. Despite all the difficult tasks throughout the day she still found time to play and be silly. She was visited by Grandma and Grandpa Flynn and friends Carrie and Ben. She also got to see her daddy, brother and sisters today.

It did not take long for her to fall asleep again tonight as she only had a 30 minute nap after testing. I did refused vitals throughout the night tonight as she needs to get rest for her big day tomorrow. She will be having an MRI and echo as well as a few other tests. They sedate her for the MRI so keeping her NPO until 11am will be my big challenge.

Goodnight to all.