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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Sunday, September 19, 2010

A surprise visit

Weight check = 4.9 lbs. (slightly up from yesterday)

Today I took my son with me to the hospital to surprise Lilly and their daddy. Lilly got lots of kisses from her loving brother.

Hospitals are shorter staffed on weekends so it was a pretty low-keyed day. My husband and I both did part of the preparation for tube feeding and were checked off on it by the nurse. The strangest part to me is checking Lilly's stomach pH. We have to screw a syringe into the end of the feeding tube and when we pull back on it, it draws some of what's inside Lilly's stomach out. We take a few drops of that and then put it on a pH strip. It's supposed to fall between certain numbers to show that it's safe to proceed with tube feeding. (If we were to get the wrong numbers then that would mean that the tube probably came out of the stomach in which case it would be terrible to force the milk in.) Tube feeding is a lot of work for us but it's easy for Lilly - she can easily sleep right through it. They tried to get her to wear a hat today because her temperature was low again this morning. But she wouldn't. I told the nurse I bet it was because the hat was touching that tube, and Lilly still is acting annoyed every time the tube part that touches her head is moved.

The dr. reported that Lilly's chest x-ray from the other day showed that everything was normal looking, except for a lot of fluid around her lungs. Her thyroid test from yesterday is normal. He also said that if Lilly's weight gaining trend continues, she may be released in a few days, and then would come back in 2 weeks for surgery re-evaluation.

If we have to be in this situation at a hospital, I'm thankful we're here. Most everyone involved with Lilly seem like they really care.

This last pictures shows the view outside one of Lilly's hospital room windows. Hunter enjoyed playing with his trucks in the window sill today and looking outside at the construction heavy equipment, the parking garage ramps, and boats on the St. John's river. An interesting tidbit about the river is that it is one of the few in the country that flows north, instead of south.

It was sooooo hard for me to leave Lilly this evening, though it did help to have my son with me. (He's such a happy little guy.) Once again I'm feeling so blessed that most of the time my family is all together every single day.


  1. so glad got some extra time with both of you..and you're right hospitals are a little more "relaxed" on the weekend:)

  2. I believe I like that it was a calm day. A day that maybe Lilly could get more use to what is going on without adding something else new!!

    And her hair looks calm today. LOL xxoo

  3. So, the Lord gave a bit of that peace we are praying for...His day was spent in relative calm, the new reports were good and LiL gained a tad..So may you have more of the same today..peace that passeth understanding..and our lovexxxooo

  4. My Hunter and I check for updates on Lilly every day. We are praying for her fervently.I know what I went through at the hospital with him and I can only imagine what all of you are going through. Hunter and I were reading about Lilly the other day and he told me that you should sing to her because that will make her feel better. His suggestion was "Blue Moon" or "Do Wa Diddy" because he really likes those :)

  5. thumbs up to Blue Moon and Do WA Diddy!!