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Wednesday, September 15, 2010

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.


6 comments:

Jenah on September 15, 2010 at 11:51 AM said...

WOW! I am just amazed every time I read one of your posts. I am praying for Wren in a BIG way! Your story really touches my heart. Your so honest and open and brave! Stay strong and God Bless!

Wanda P. on September 15, 2010 at 12:15 PM said...

You all are in my prayers, I've known you and Jason a long time and you don't know what the word quit means and I'm pretty sure that little angel was blessed with those same genes and stubborness. She is a gift from God and he will protect her. I wish you all the best and please keep updating the blog. In my thoughts always!

Shireen said...

Hi Nicole. I was trying to find a way to get in touch with you. I'm hoping you will read this. I am a mother of two in Toronto, Canada. I recently had my baby girl in August. She too has been diagnosed with ABCA3. Each post you have written touches my heart deeply. I feel your pain. I am amazed that Wrenn has fought for so long and it gives me hope that my daughter will be a fighter as well. We too are waiting for a lung transplant...and you're right...keeping them "healthy" and stable enough for it is just as challenging. My thoughts and prayers are with you. I hope we can get in touch.

Anonymous said...

Nicole,
i'm so glad to hear she is doing better and that her test results were good! I pray everyday that her lungs come! I know they will! Stay strong and as always beautiful little wrenn is in our prayers!!!!
sincerely,
Lesly&Haylee Steinmetz

Megan said...

Nicole: My name is Megan and I am the sister of Kirsten tenBrink, your prior neighbor in Richmond. I follow your site daily, pray daily, and am so inspired by your strength, love and fortitude. Wrenn is so blessed to have such incredible parents who are advocating for her. If there is anything I can do, ANYTHING, please call upon me. I am in Atlanta, but I'm much closer to you in thoughts and prayers.

Bless you and your family.

Megan

Barb Hankemeyer said...

Hi Nicole, My name is Barb Hankemeyer and we met Friday evening at Vito's restaurant. You and your family have been on our minds since we met. Our thoughts and prayers are with you and your family especially Wrenn.

Please let me know if there is anything I can do for you.

My email address is bhankemeyer@msn.com and I would love to hear from you.

I have Bible study on Tuesday mornings and have shared your story with them. So now they are all praying for Wrenn and the three of you as well.

I will continue to tell people about Wrenn and pass on the web site if that is OK with you.

God Bless all of you, Barb and Jim Hankemeyer

 

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