Doctors doctors doctors ...

Height = 24 inches (2 feet)

Today was a busy day for Lilly. She had four appointments at the hospital, then as soon as we got home she had to get a bath to "de-germ". I then put her on her mat with her laptop so she could check her e-mail but after hitting a couple buttons, she was sound asleep.

First Lilly had an ultrasound of her kidneys done. (Trisomy 18 kids often have kidney issues so we have to periodically check them.) That seemed to go just fine. We're supposed to get a written report from the doctor soon. But if there's anything wrong, it wasn't enough of a concern for the doctor to see me personally. (The ultrasound tech was the go between.)

Then Lilly was checked by her pulmonologist, Dr. H. We're to continue to have her on a half liter of oxygen for sleeping each night. Then after heart surgery, we will re-evaluate. Dr. H. seems to genuinely care about Lilly. She was excited Lilly is now 14 months old, thriving, and has such a good quality of life. She said "what a testimony Lilly is to us." She also got very impressed with Lilly's "button buddy" around her g-tube. In fact, she liked it so much she called her nurse in to see it and to write down where I got it from and said the hospital needed to order some.

Lilly's next doctor checked her g-tube. It still fits well - no need to move up a size yet. She admonished me for not calling her when Lilly's g-tube was yanked out that first time. She said Lilly's stomach was still in healing mode and it should have been checked to make sure it was in right. Well God was with my friend K.L. and I as we put it back in because it was fine. She checked Lilly's belly button hernia too (which has gotten worse) and said it was fine and that it would most likely heal itself within a few years. She also encouraged me to get feeding therapy for Lilly to work on mouth feeding. We plan to but wanted to wait and see if she goes for heart surgery in the next few weeks first.

Finally Lilly saw a dietitian. I've cut Lilly's feed rate back from 31 to 26 ml/hr. in the past few weeks and found that her spit ups are now down to an average of one a day. But I was afraid they would say that wasn't enough. However, given Lilly's height and weight she said it was perfect. That Lilly needed about 20 ounces of milk a day.

When we were leaving the hospital, I was excited to see a farmers market set up near an entrance. I thought that was a great idea! But then as I continued walking, I started thinking about all the germs in the hospital and all the air borne germs floating around and settling on the food. By the time we made it out the door I was completely grossed out by the germ idea. (I know I know - buying food at Walmart is surely almost as bad.) I had to laugh to myself, as I uncovered Lilly a little from being covered in my wrap (to keep germs off her), I've really become a "germophobe" since having Lilly! With good reason though ...

Lilly's heart catherization is scheduled for tomorrow. She will be going under anesthesia to have it. We're not sure if she'll be released from the hospital late in the day or kept over night. Please pray that she will handle the anesthesia well and recovery quickly. And that no new heart problems will be found. Thank you!!

"Before they call I will answer; while they are still speaking I will hear." - Isaiah 65:24