Life in St. Louis 10/17/2010

Sent in by Nicole this morning.

I’m sitting in Wrenn’s room, trying to figure out how in the world to put my thoughts into words. My mind is on overload as I try to explain how time has passed over the last four weeks. For five months we were in a holding pattern and knew the goal; getting Wrenn healthy lungs. The anxiety of waiting was brutal and then once she had her transplant the ride turned more intense. For several days (even while lacking sleep), we were on a major HIGH. Before surgery we were told many times of the possible complications she might have during and after her surgery (there were MANY things that could go wrong and death was one of them!) and oddly enough she has pretty much hit them ALL. So what happens when you’ve hit that high and are told there are some MAJOR complications? You hit way LOW. Every bump pulls me down further and further to the point where I feel like I’m drowning and I can’t come up for air. Time, I am told is what she needs to get over these hurdles.

This last week hit me hard. Wrenn had fluid in her lungs, her drainage tubes were still putting out unbelievable amounts, her X-rays looked like they did at birth, she was put on SI-PAP, then down graded to a different form of C-pap, and is now on a high humidity nasal cannula at 6 liters and 40% oxygen. This scenario is very familiar to my Winnie Plamer nurses who went through the diagnosis with us since when was born. Coming full circle is eerie but I know God has his reasons. Maybe it’s closure, or testing the lungs, or testing Wrenn one last time. Maybe it’s a test for me, to always remember where we’ve come and that even with new lungs we can go back. It’s a reminder how she is still vulnerable to her everyday environment. Life as a transplant recipient is NOT easy and we will all have to make drastic changes when she comes home.

The duct will take six to eight weeks to heal (she will not receive breast milk until then). An ultrasound revealed that her diaphragm is paralyzed. (This can be a pinched or cut nerve from her surgery and/or from being on the vent for two months (as well as the paralyzing drugs). That in itself will take a good two months to recover. The surgeon told us today that they are going to wait and see how she does over the next few days and decide if surgery is necessary. (Surgery would be a huge setback). Pray for God’s healing hands on that issue!

On top of all of that, she is due for her one month bronc the end of next week, which tests for rejection. This procedure is done in the OR and there is always risks of infections or complications. (Pray we have none).

Most patients are out of the CICU by now but Miss Wrenn has decided she likes it here, so we wait and see. I believe she is supposed to be there and WHY that is, will most likely be revealed in the future. I have learned that my questions ARE answered, sometimes sooner, sometimes later, but ALWAYS answered.

Wrenn’s nurse last night, Elisa, was telling me that she has worked in many departments of the hospital and that she has seen more miracles in the CICU than any other floor. God continues to amaze me at how he brings guardian angels my way, and reminds me that HE is always with us and surrounds my little girl as she fights these battles. Wrenn doesn’t know it yet but I look to her for my strength and of course to my blog, which has kept my spirit high even in my darkest hours.

We want to thank everyone for their continued prayers and wishes as we continue down this path of the unknown. I’m so glad we don’t have to do this alone! XOXO

Twelve Days Later

With her daughter finally breathing without assistance, Nicole was able to take the time to sit down and write a message... straight from her heart!

It's been 12 days now since Wrenn's surgery. I can honestly tell you that I've hardly had time to catch my own breath. The days and nights of 'waiting' were brutal and we did that as patiently as possible for 5 long months. But yesterday, October 3rd, my little fighter did something amazing; she is now taking her own breaths; no more oxygen. Just thinking about it makes me cry and I keep thanking God for answering all of our prayers. Jason and I feel lucky to live in a time that allowed us to give her this opportunity, even though it comes with great challenges. As I've continued to say, this is all a leap of faith.

Most of you don't know this but prior to having Tanner I had four natural miscarriages over the last 8 years. I truly feel as though Wrenn has a purpose in our lives. She is meant to be and I know she will do great things. A genetic scientist would say 'God got it wrong, he didn't catch the mistake at conception' but I know God had a plan and will continue to carry us through this journey every step of the way. I am touched every day by the support our family has received. I'm honored that Wrenn has touched YOUR lives.

But for the next few moments, there is one special family I would like to talk about...

When I was told of Wrenn's condition when she was just six weeks old, the pit of my stomach went numb. There was no chance for her to get lungs from a living donor. This meant another family would lose a child and be faced with a very difficult decision. I'm sure every mother would agree, chills go up and down your spine as you shake your head and say, 'I can't even imagine'. Every day since Wrenn's diagnosis I have thought and prayed for the donor's family. I knew something terrible would happen, five months before it happened, and found this scenario heartbreaking.

At 5 pm on the 21st of September I was told Wrenn would be getting her lungs later on that night. At that moment my voice silenced but tears flowed down both cheeks. And I immediately prayed for 'them', thanked them for the gift they had given to Wrenn, and asked God in a whisper that they'd one day be strong enough to contact us. And then I thought, maybe that's asking too much. It's hard to put yourself in their shoes and I hope I never have to. I will allow God to guide them in whatever is right for THEM.

Over the last five months I also thought of the other transplant recipients who received eyes and saw for the first time, or got off of dialysis, thanks to their new kidney. I think of that baby who had been waiting five months for a new heart and received one the same night. In several ways, Wrenn is connected to all of those same transplant babies. They share the same gift of life from one family and were all given a second chance, an opportunity to live and play, and each of these children will hopefully have a chance to one day inspire others by telling their stories.

The donor's family will ALWAYS have a special place in our hearts and I know they'll be in your hearts as well.