Friday, October 23, 2009

3 months, 3 pounds...(posted by Lizzie)

(February 19th, shortly after finding out London's diagnosis of Alpha1)

I had no idea what was ahead of us after receiving the phone call from her dear pediatrician, Doctor Owens. I was alone when I took the call and I was trying so hard to take in her every word-making notes, willing myself to understand what she was saying to me. Not believing this could be true, I waited by the front window for James to get home with Jonah. I was so sad that I had to tell him about this rare genetic disease we'd never heard of before that was now a part of our lives forever. As a mom, all you really hope for is a healthy baby, I thought I had one when she was born. I wondered that night if she would die. I had to think about Jonah possibly being an "Alpha" and not yet symptomatic. I laid with him that night crying and holding him, hoping to God he was alright. I wondered if we'd have more kids like we'd always planned. I still wonder. (for those of you that don't know, Jonah is the 1 in 4 not affected, London is the 1 in 4 that is, the other 2 in 4 is to be a carrier of the disease as James and I both are)

I'll never forget that night as long as I live.

I feel lucky that we were surrounded that evening with both sets of Lulu's grandparents who brought with them such comfort and love. We were all scared. A million questions that needed answers we wouldn't immediately get. We ended this late evening together on our knees, and it was a beautiful prayer.

Fast forward 8 months, a million heartfelt prayers, many appointments at Primary Childrens, more blood draws than I care to remember, a few hospital stays and a very good understanding of A1AT- London has truly "declared" herself ready for a new liver.

I knew her appointment this week would be pivotal. She hadn't been "tolerating" her feeds (i.e. throwing up a lot, often) and had become noticeably smaller and weaker. Her bony little back and arms are hard to look at. It was decided on Wednesday that it was time to start her workup to be put on the UNOS (United Network for Organ Sharing) list. Approximately 25% of liver transplant candidates have to wait for more than five years before receiving a liver and many die while waiting on the list. (Mayo Clinic) PLEASE BE A DONOR IF YOU ARE NOT ALREADY! You may save someones child or a child's mother. You will save someone who is SO important to someone else. That is heroic.

I was also able to start my screening as a living donor for London. I had some preliminary lab work done and we will both continue tests week by week. Dr. Book felt like I'd be a better candidate to start with than James due to our size difference. The smaller the liver, the better for a baby-smaller person=smaller liver. So I will continue on this road unless something disqualifies me. Then James will start at the beginning. I pray I will be a match. Please pray I will be.

Dr. Book thinks it will be about 3 months from now but she HAS to gain about 3 pounds before she could undergo such an operation and recover well. This will be a huge challenge. Meanwhile they changed her feeding tube diet and started her on Prevacid to help with the vomiting and to protect her stomach lining. I must mention that there has been a small MIRACLE at our house...we discovered that London loves Cafe Rio's guacamole! She has had it for breakfast, lunch and dinner the past few days. It is the only thing she will eat (by mouth). This will be on tap at the Badger home. Thank goodness for Cafe Rio, it may be our saving grace to put a little weight on Lulu's dainty frame. Needless to say, she reeks (but in a very, very good way) of garlic and onion!

We have a long road ahead of us, but we will be ready. We can't wait for Lulu to be well. We are so grateful that there are such smart people in this world that will ultimately save her life. Thank you doctors! One day- when this is all behind us, we will tell London all about it and what a fighter she was. I'm sure she always will be.


Julia said...

I have never seen those pictures, but I'll never forget that night, either.


Brock and Lisa McKeown said...

Hey Lizzie I'm so glad you have a blog. I have wondered so many times how London is doing. I hope you know she is in our prayers.

Annie said...

I cry every time I read your blog. I ache for you and pray that all things good will come your way as you head in the direction of a transplant. We are praying for you and your little love daily in our home. Hang in there.


Brian and Stephanie Wood said...

I can tell she is afighter just by all the stories - Just like her mom has always been. I love you Lizzie and think about you and your family all the time!

L. Smith said...

You are incredibly strong. Know always that I love you!

Liz said...

Lizzie...Atleast we know she has good taste! YUMMY Cafe Rio guac! You and your family are in our prayers. Our kids are thinking of her often and we know that there are many doing the same.

Amanda said...

Oh Liz, it brings tears to my eyes everytime I read her blog! I know that everything will go great, and that you will be a donor! I think about you and your family all the time and you are always in our thoughts and prayers! I know she is a fighter and will beat this! Hang in there!! xoxo

Rachel said...

its hard not to cry reading this. hang in there and were praying for you!


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