Updates from Nicole

September 14, 2010

When I first heard the news of Wrenn's genetic lung disease we were given a manual to read, which contained everything you wanted to know about a double lung transplant. Wrenn was only six weeks old and was still in pretty good health at that point. I remember thinking that the genetic tests had come back wrong; anything was possible, I thought.

I broke down into tears after reading that booklet. So many things were disturbing; the broviac, the many medications, the levels of rejection if her body didn't accept the new lungs. It seemed like she would lose before even getting started.

I've been living in the NICU now for 5 months. She already has a broviac, is currently on about 16 different types of drugs, has had several ups and downs, and has beaten all the odds with the help of her doctors and nurses. I'm starting to think that the NICU is our hazing. If you can make it TO transplant, you have a good chance of pulling through a double lung transplant. Wrenn has proven that she is UP for the test.

I feel like I have come full circle at this point. What I dreaded at that six week mark is what I now want to see more than anything else in the world. Her lungs are poison to the rest of her organs. They don't work, they never have worked and they are ONLY getting worse day-by-day. We have all accepted that she won't live without new lungs.

I have been told that once she takes that first breath after transplant she will turn a beautiful pink color. Right now she looks like a vampire. After transplant she will breathe easier and need less medications. She will be taken off of the oxygen and off of the vent. I will again get to hold her and see the dimples on her cute little face.

Last Sunday we almost lost Wrenn. It was a horrible sight to watch and I never want to relive that day again. After being paralyzed, Wrenn has done very well. She has stopped fighting the vent and is oxygenating in the 90's where she should be. It is hard to see her sleeping all the time but it's also a relief to have her stable.

During this last week they did a liver test, which came back normal, and a brain scan, which also came back normal. This is very good news and the tests show that her body is protecting the parts that are important. If either of these tests had come back with ugly results, she might not have qualified as a candidate for transplant anymore.

We have so many people praying for Wrenn and our family and I want you to know that God has sent us many, many blessings along our journey. Each day I am absolutely amazed at how well HE is taking care of us. Our guardian angels are very busy but have kept our spirits high as we continue to ride this roller coaster each and every day.