No New News

Lily had all of her tests conducted yesterday at the Cleveland Clinic. Her GI system is normal and she is having some issues with swallowing. Kim and I suspected the swallowing issues but her normal digestive tract is welcome news. She has already gained about 8 oz. from being in the hospital only one day! The doctor's are only allowing her to drink from the bottle for about 15 minutes and the rest is tube fed. She also gets 20cc of formula per hour dispensed through her NG tube for 10 hours while she sleeps.

Lily should be discharged in 3 to 5 days at which time she will come home with the NG tube in place. Kim and I will be trained on how to care for Lily and place the tube and Kim will start her FMLA at that time. We are both hoping that Lily gains weight quickly so that she can get her heart repaired soon and be on the road to recovery.

No Weight Gain

Lily is being admitted to the Cleveland Clinic Children's Hospital today because she has not gained weight for two consecutive weeks. They will perform the GI and barium tests that they had previously scheduled while she is down there and place an NG feeding tube. They will monitor her feeding for about a week to see if she gains weight or not. While she is there she will also be evaluated by one of the chief heart surgeons. If she does well on the tube, she will probably come home for a bit to gain weight in preparation for her surgery. If not, they may go ahead and do the surgery while she is in there. It is difficult to say right now.

This is not unexpected and the cardiologist has forewarned us that this would happen as she grows older. The feeding will not be an issue once her heart is repaired.

Marching Band Dance

Saturday we met some friends at a local high school for a demo of 4 local marching bands. Each band played their half-time show and Gwynny had a blast.

Enjoy The Silence - Lacuna Coil

Main Campus

Kim and I took Lily to the Cleveland Clinic main campus on Friday for an appointment with the pediatric cardiologist there. The doctor we were seeing at Fairview Hospital (Cleveland Clinic hospital) wanted us to start seeing the doctors at the main campus as the time for her heart surgery gets closer. While we were there, we also spoke with the doctor who will be Lily's surgeon. Both of these doctors are extremely nice and explained everything in great detail. The surgeon reassured us that Lily's defect is quite common and something that he has dealt with many times before. In fact, he said that only 2 infants have died since he has been working at the Clinic both of which were weeks old with massive problems.

It seems that kids with Lily's heart defect actually have stronger hearts than normal and this is why they can have an issue with gaining weight since the heart consumes all of the calories. She was put on another medication to help her heart beat a bit stronger in the hopes that she will gain some more weight before the surgery. As it stands, it looks like she will be having the surgery after she is 3 months old but before the viral season starts. Everyone is reassuring us that we will have a new kid after the surgery. Right now her feedings are quite frustrating since she does not want to eat.