Saturday, November 14, 2009

Home-sweet-Home (posted by Lizzie)

(pre NG tube)

Three weeks later and we are finally home, for the time being at least. London is so happy to be home! My deepest thanks to all those who cared for London medically and to all those who've cared for James, Jonah and myself in many other regards. We've had some highs, we've had some lows but for the most part we're just trying to hold on.


London's team has put more urgency on her transplant than earlier thought. We are now looking at the first part of December. I had to sit when I was told it would be so soon. January sounded better. London's workup to be listed on the UNOS registry was put on hold when she contracted H1N1. She hasn't been well enough to be put under anesthesia for an echo cardiogram, the last test before she is listed. Needless to say, I will soon be toting a pager on my hip, waiting for THE page that most likely WONT come, saying they have an organ for my baby. There are just so many people waiting. I can only imagine the agony for parents waiting for hearts or lungs, something they have no control over.


So, we very luckily continue with my Living Donor screening. The liver is a miraculous organ. My CT showed PERFECT size but less than ideal arteries for transplantation. I have an angiogram Wednesday which will give a much better look at my liver as well as a definitive yes or no to ME. I want it to be me, I feel like it is supposed to be me. I want us to have matching scars across our bellies. I want her to be able to look at me whenever she feels self-conscious and see how proud I am of my scar. It would be my favorite physical attribute. I want to wear bikinis together for the whole world to see that we are strong and both made it through something very difficult, together.


As much as James would like to be a candidate, he will not be screened at this time for many reasons, mainly to preserve our livelihood during this already difficult time. Being a small business owner doesn't come with any sick leave or paid vacation. There is no one that can run his company but him. The recovery time is 12 weeks before returning to work or lifting more than 10 pounds. As an entire family, we've decided it's best for our little family not to have James undergo donation screening at this time.*


Meanwhile, due to the timeliness of her transplant they have started screening/will start screening 2 other family members who are likely to be good matches and in the position to donate, if needed. They will be silent heroes for now as privacy is important during this time. Many people have sincerely offered up their own organs for Lulu, some "too old" by transplant standards, some not having the "right blood" and some with "hearts of gold" having no idea of what they'd really be getting themselves into. All of which we are extremely grateful for.


For now, we are adjusting to home life. Part-nurse, part-mom. Part-male-nurse, part-dad. ;) And SO lucky to have a NICU nurse Grandma that's been here around the clock helping us through. Thank you mom, I'll never stop needing you.
(*correction- after Lulu's apt. today Monday, Nov. 16th, James will start the testing tomorrow per the surgeon Dr. VanderWerf and Dr. Books recommendations. In case I'm not able to donate it would be the best thing for her to have a part of her daddy's liver. If that shoe doesn't fit we will move on down the list til we find one that does)

17 comments:

Sarah said...

congrats on getting home! :)
i think of your family constantly, and am hoping for only the best of outcomes.
--sarah & mo

Jo Lynn said...

Yeah, I'm so glad you guys are home and I sure hope you can be the one to donate! You are always in our prayers and I'm glad you have such an amazing Mother to help you out during these hard times in learning how to be a nurse and still be a Mom.

AshleyS said...

Everything you said about sharing scars and teaching her to be proud of it just left me here crying at my computer. Liz, you are an amazing mommy...your outlook and foresight (b/c you are so right that it will be so important for her to be proud of this trial) is a beautiful thing to read about. Love you guys! Here's to many proud bikini moments next summer on the beach for you 2 girls!

Brock and Lisa McKeown said...

I am so happy LuLu is home!!!! I love your Faith and how Strong you guys have been. Our thoughts are with you and pray that this Journey brings every blessing you need at this time.. and for the future.

Carrie Page said...

Welcome Home! A smile from ear to ear as I read this one! We will continue our prayers for your sweet family. Moms are truly amazing!

JP said...

Liz, so glad you are home now. Is she over the H1N1? That's great that your mom is able to help out. If she ever wondered why she wanted to be a NICU nurse, now she knows. When going through the live donor transplant decision/screening process with Tal's family before he donated to his dad, so many people considered, tears shed, futures considered...she's so lucky to have you as a mommy.

The Davidson's said...

you truly are amazing Liz. You and your family were hand picked to be such true examples of strength and humility. I tried to come see you and both times you were already asleep(it was around nine when i was working)
I am so glad you are home and so happy for all the support you have. Again, hand picked, Moms a NICU nurse..... My prayers are with you daily.
PS. Your posts always make me cry!;)

Vic, Linds, and the girls... said...

Liz, I am so glad that she is out of the hospital!! We are praying for you guys. I am sorry I couldn't make it to the dinner the other night. Vic came home with tears in his eyes and said he has never been to anything so touching. We think about your beautiful family everyday. Please let us know if there is anything we can do. xo

Liz said...

We read your posts as a family during prayers, FHE or Family Scriptures depending on the time. Anyway, today when I read the title, the kids CHEERED and SCREAMED with excitement!!! Jackson and McKenzie were jumping up and down. We are so happy London is home with you. We are waiting to hear more good news and know that you will be blessed with strength in the upcoming weeks.

Karen said...

Praying , praying for your sweet family. Stay strong in the Lord. He is always there for all of you.

Racie said...

We're glad Lulu is home. We love you guys and will help whatever you need. :)

Dale and Tabitha said...
This comment has been removed by the author.
Utah McMonsters said...

Liz, Oh I cant hardly read your blog b/c it amkes me so sad, but grateful at the same time. Thanks for having such a good attitude, it makes me want to be a better person! Glad things are turning around!

Dale and Tabitha said...

She is so beautiful. Her eyes are amazing. I can't wait for London and James'wedding. Your amazing Liz.

Erica said...

What a doll! London is an adorable little girl. My husband told me about your cute gift for Eden. I can't wait to see it. I am sure he will be posting pictures soon. I am glad to hear you have a date set soon for transplant. What a nerve racking time it is for you right now. It has only been a week since transplant but already my anxiety is starting to subside. Though I will never fully relax it is nice to know that my baby has a nice healthy liver inside of her now. If you have any questions about the transplant process please ask. My email is ericaklai@gmail.com. Email me and I will give you my phone number if you would like to talk as well.

April said...

Liz,
I just came across your blog. I'm so amazed with the strength you have. What an amazing mother you are! Lulu is absolutely beautiful and just know my prayers are with you all. Good luck with everything I hope you will be able to be a donor for her. I hope the benefit went well- I wish I could do more to help!

Rachel said...

im so glad she finally came home! hang in there liz, you know lulu will.

 

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