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)