Day 5

Today has been a mixed bag. When we arrived at the hospital, Erin was sleeping very peacefully, and her stats were great. Oxygen was in the upper 80's, lower 90's. Pulse was in the 145 - 155 range. Everything else was great.

The doctors came by for rounds, and it was decided to cut her PGE in half, and to leave her on it until Sunday, when they would again try to wean her off of it. Hopefully by that time, the pulmonary hypertension will have lessened to the point where the artery is capable of passing enough blood to her lungs for oxygenation.

Erin woke up shortly, and we had a great time playing with her. She is so serene when awake, and even gave a couple of smiles and laughs. We are told that they are involuntary in a baby this age, but it was wonderful to see anyway.

After Sheila made her regular, every two hour stop to pump her milk, the nurses gave Erin to me to hold. It was wonderful. Her oxygen level immediately jumped to 100%! It stayed there for awhile, and then hovered between 95 and 98 most of the 45 minutes that I had her. Things were certainly looking up. Unfortunately, we took a small turn for the worse when the nurse asked me if anyone had discussed her picc line with me. This is the main line through which drugs and nutrition is fed to her. As of now, there are a few lines that are surgically implanted into an artery through her umbilical stump. We had learned sometime in the last day or so that this type of line only lasts for about a week, and then it had to be replaced. That time was today, as there was an opening in the OR that could accommodate her. In the OR, they will remove the surgically implanted lines, and replace them with one line that will accommodate her needs.

We watched as Erin was placed into the incubator that is used for transport, and accompanied her to the OR. This is not a place you ever want to go as a parent. After we signed the consent, we returned the ICU parents waiting room, where we are waiting on word of how things are going. Probably the hardest thing about the last few days is the incredible emotional roller coaster that we are one. Our energy levels stay pretty high while we are with Erin, but once we are apart from her, it is like letting the air out of a balloon.

Oh, and one other thing. If you ever have the misfortune to spend 12 - 15 hours per day in a hospital, remember to wear comfortable shoes!