Lilyann's experience (from Grandma's point of view)
Well, this has been an experience. We arrived yesterday at 11:00a to begin pre-registration, lab work, x-rays . . . . .everything was going rather smoothly until time to meet the surgeon. He had an emergent surgery so we were not able to see him until around 2pm. He basically reviewed everything that we had already been told by the Cardiologist, but did share a few other items like the need for a temporary pacemaker and expected length of stay. We then left to find the hotel that Lilyann's Medicaid secured for us. This place was suppose to be within "walking distance" of the hospital . . . . .yeah, if you started walking about three hours before you were suppose to be anywhere. We actually stopped at the one that was 2.5 miles from the hospital only to find out "no reservation". . . . . . we were at the wrong place; they put us up at a place that is close to the Gallaria. Add to this mix a 2yr big brother Dakota. What fun!
Anyway, Lilyann was not allowed anything to eat or drink after 3am . . .no problem right . . . .wrong. For one that has not shown much interest in eating, she decided that 3am was a good time to start. So the day began. We left the hotel at 5:30am, arrived at the hospital at 6:00am. Lilyann was in the surgery holding by 6:44a and in the OR by 7:13. Then the wait and wait and wait and wait. She left the OR for recovery at 12:04pm. I've had experience with little ones in the NICU, but I wasn't prepared for what I saw. My heart broke. The surgeon said everything went well. The hole in her heart was the size of nickel and very close to the main artery. Think about the size of a nickel . . . .that is significant considering the size of her little heart. From start to finish, the whole procedure was just 15 mins shy of 5hrs.
Once they patched her heart and took her off the heart/lung machine, her little heart started beating again . . . . .only it was beating about every other beat, so the pacemaker was started. By the time she came out of the OR, she had started to breath a little bit on her own, but was still on the ventilator. Later this evening, she was able to come off of the pacemaker and the ventilator. Her color looks great! She already looks like a different baby.
They are keeping her sedated because she doesn't like her surroundings when she "wakes up". She sees us and does not understand why we will not pick her up . . .this makes her very upset and she "fights" the tubes and lines still in place. If everything goes well, they say we may bring her home on Saturday . . . . .continue to pray. Thanks for the thoughts and prayers thus far.