Then to Children's

We were told that they planned to take her to Children's hospital on Sunday so we slept in a little on Saturday. Then we got a phone call Saturday morning telling us they planned to take her to Children's a day early, in about an hour in fact.
So, we rushed over to the hospital and sure enough 3 or 4 hours later the transport team arrived.

They bundled her up and we all met up at Children's NICU.

Walking in to the NICU it just seemed like a more serious place but in a good way. We knew we had some rough times ahead and they obviously knew what they were doing. The big shock was seeing her for the first time there. She was under a little tent, to keep her oxygen levels lower, and was removed from us a little.

We could reach under and give her a binky and I'm tall enough that I could look through the little hole in the top. 

Mostly we just watched her through the plastic. She also developed a nasty habit in the NICU. The nurses put a little sugar water on her binky so she wouldn't spit it out and by the time she left if you tried to give her a binky without the sugar water you could see the look of contempt in her eyes.

One day a hospital chaplain came by and talked to us. As we talked my old Catholic self reappeared and the next day a local Catholic Deacon came by and baptized Mirabel.

Surgery day arrived. Cristy and I had spent the night at the hospital in one of the twin beds in the sleeping room. They came for her at 7:30, we kissed her and told her we loved her and went back to take a nap. I can't remember off the top of my head how long the surgery took, but it was probably 4pm or 5pm before we could see her.


She was pretty out of it, she had a breathing tube in her nose and three tubes coming out of her chest. She was on ECMO (two of the chest tubes) to help her circulate her blood so her heart could rest a little.

The surgeon told us that things had gone well except for a couple of complications. One of her valves was leaking (not limiting the blood flow to the one direction it is supposed to flow) and when they touched her heart she had lots of arrhythmias. They gave her medication for the arrhythmias and she'd have lots of cardiac echo's to keep checking the valve.


She did pretty well for a couple of days, but the ECMO is a stressful thing to be on and we got a call Saturday morning that she had developed some sort of skin rash and was having seizures. So, Saturday turned out to be a long day for little Mirabel. By the end of the day she was off ECMO and had those two tubes removed. She was still having seizures, but they were controlling them the best they could.


Sunday was a much better day. She was quiet and she only had a couple of seizures. There had been some irregularities in her blood work, but that all seemed to resolve after the ECMO was turned off. They even started to feed her actual breast milk for the first time.

Today is Monday. Before we arrived this morning they took her to the OR to close her chest. She did well, no arrhythmias, but she was pretty out of it when they brought her back. Throughout the day she has started to wake up a little but now she's off to the CAT scan. The plan for this week will be to keep an eye on her neuro status, making sure there isn't anything serious causing her seizures. Then getting her off the vent (breathing machine) and increasing the amount of her feedings. I'll keep this page updated as often as I can.

This has been quite a rollercoaster. It seems like such a long slow crawl up and whenever any little setback occurs, the bottom just drops out.


We want to thank all of our family and friends for being so supportive. I know we haven't accepted a lot of help but just knowing you are out there means so much. Keep praying for Mirabel and please pray for all the children here, especially for the two roomates shes had here and their families. I wont tell you their names for privacy sake, just call them M and A. Very sweet girls with very nice families.