Wednesday, April 13, 2011

To GO or not to Go, that was the question

We had labs and clinic on March 29th and everything looked great. SO great that we were able to discontinue 2 of LuLu's meds. YAY. She is down to 1. I can't believe it-- a year ago we were giving her dozens. She takes Prograf (anti-rejection drug) twice a day at 9 and 9 and will forever. With Prograf comes many side effects and I've just recently had the courage to dive in and study them all out in greater detail and understanding.

I know, it took me a year but I couldn't handle it emotionally until now. There is no alternative to taking it for it's the only way to prevent her from rejecting her liver and dying. So we will deal with whatever comes-as it comes. The greatest worries for me are her (much) increased risk for Melanoma and Lymphatic Cancers. She will probably never conceive a child for the side effects on a fetus are devastating. I learned this at a peak in my own grieving about not getting pregnant again myself. We have chosen not to risk this disease on another child. I am so glad I loved both pregnancies and both deliveries. Labor and delivery is the best thing in the world.

I wish I had known LuLu would be my last, so I could say goodbye to that then, know it was over, the last time I'd take a brand new baby home from the hospital. It's like not being able to say goodbye to someone you love and will never see again. I stopped feeling sad for myself for I've experienced this miracle twice and just felt sorry for my little baby.

I know though that adoption can and will be a wonderful experience for her if she chooses to do so. It will be it's own unique, special journey and she will be a spectacular little mother. (in like 30 years) Babies will be sent to her from God through a different medium but the ones that are suppose to be hers to love. Adoption has been on our minds a lot lately. Even before we got married James and I talked about it being something we'd love to do and we hope we can. Especially with our recent trips to Haiti the need for loving homes for these amazing children is so great. We hope to be so lucky.

After LuLu's fabulous clinic appointment on that Tuesday the 29th she became really ill just hours later. Tuesday, Wednesday, Thursday...starting to get really worried for her and my need to cancel or pursue my trip to Haiti on the following Sunday. We went for labs Friday to check the little lady out and she got really ill in the main lobby of the hospital. We were sent to the ER for testing and to start receiving fluids and meds. I began to say goodbye to Haiti... London was admitted to the hospital and made a really quick turn around. My hopes to go began to flicker again and allowed myself til Saturday to see how she was doing before deciding one way or the other. Tests came back positive for Rotovirus (yes, something she was immunized for) but having already been sick for so many days figured she was at the tail end of it. Her improvement overnight was basically a full recovery and as soon as we were released that afternoon I began to pack and looked forward to an experience of a lifetime.

Thankfully London did so well while we were gone and I had no doubts about ALL the capable hands her and Jonah were left in. And Haiti was the best thing that could have happened to me.


Lindsey said...

I loved this post. I am not able to carry a child and my little boys adoption was amazing.

I still grieve not being able to conceive my own, but there is also something magical in its own of adoption.

I would love to adopt again, I just have to figure out the financial means of it. Good luck to you and yours and if you start an adoption journey I hope to read about it!

Anonymous said...

Wow Liz I had no idea that being on prograf will keep you from having a baby. I hear about all of these sweet liver kiddos on it and I had no idea. At this point I still have no idea what we are in for with Belle and what this expierence is going to be like when it comes time for her to have her transplant. I definatley feel what you are going through with knowing the London is your last babe. I think that EVERY day, do I have another? I am two-for two is this area. Belle turns 2 tomorrow and I find myself thinking about starting to try for another baby later this year. I feel that there is one more but I don't want to risk passing this disease onto another child. I too feel that I didn't savor all of the special things that you would knowing it was your last. You and I have a lot of similarities with this disease! Hope all else is going well for you and your family. It was been a while since we have had any contact. Sounds like you Haiti expierence was wonderful.

Marga├ža said...

Hi Liz,

Martim is also with prografa and I spoke with his hepatologist about skin cancer and he told me that is a side-effect of ciclosporine, not tacrolimus, so we just need to take the normal cares with the sun like we have with our healthy child. This is very interesting,diferent centers have diferent rules...

About Lulu having babies: I don´t know if you met Trine on FB, she had a liver tx at the age of 3 due to alpha one, and she´s becaming a paediatrician and she´s expecting a baby boy! she´s married to Ryan, who also had a liver tx due to BA!

I met alot of people who had kids after having tx, so I really hope our kids can have them!

I´m glad Lulu is better. I´m sure you kissed those cheeks alot!

Julia said...

i hope there will be a way. but short of going off meds while pregnant I've read of abnormalities like no limbs and undetermined neuro effects. so i guess time will tell. i'll have to look them up on fb message me their last names or are look on your friends when i have a sec

kisses to martim


amy16 said...


amy16 said...


That last post was from 8 year old Avery :)

I see the musician in the top photo. You need to read "Sing Me Home" by Jodi Picolt. It's about music thearapy and infertility and spirituality. I think you would really enjoy it.

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