Sunday, March 24, 2013

2nd Heart Transplant Anniversary

Lillian 2 years to the hour after being in surgery for her transplant prep.
Today is a somewhat emotional day for us today as it is Lillian's 2nd anniversary for getting her heart transplant. We are always excited today to celebrate the life she was given, but our thoughts always return to our donor family and their gift today. We are thankful as Lillian has done extremely well post transplant, with only a few minor issues that are still bothering us. For the most part she is a happy little girl who loves playing with her sisters.

Of the issues still affecting us, the largest would be getting med levels right. Despite our best efforts, Lillian's Cyclosporine levels are continually low, and stay that way no matter how much we raise her dose. This is probably due in part to the... cleansing side effects of some of her other medicine, which is a two part battle we are always fighting. Thankfully, it is about as small of an issue that a transplant patient can have. We also find that her extremities are extremely cold to the touch most of the time, but it appears that this is likely just something that will always affect her.

Lillian's favorite activity - dress up
Last year, I had biopsy results to share, which will have to come later this year as Lillian's biopsy was postponed due to the entire family spending all of February with one of at least 5 distinct colds. We will have her biopsy in early April, leaving us with another week or so to stress and worry about it. Given the concern last year about a tight aorta, there is a decent chance that this will need to be ballooned during her biopsy.

Despite our worries for her biopsy, we feel that Lillian is doing extremely well, and we are eternally grateful for the life she was given. We always consider today to be a bigger day than her birthday, because without today, she wouldn't have a birthday at all. We have our donor angel to thank for that. 






  1. I found Lillian's story while searching for info on babies on ECMO after Norwood. My baby boy was born at 33 wks weighing 5 lbs and was diagnosed in-utero with HLHS and aortic stenosis. He had the hybrid procedure and 10 days later his heart started failing, his right ventricle, the only one he has, was not contracting properly/. In the cath lab they found yet another narrowing that was between the shunt he had with his hybrid. So they ditched that procedure and moved straight to the Norwood the next morning. They feared my son needed ECMO that night before the surgery but he did fine. He did however go on ECMO after the procedure due to his blood pressure dropping when taking him off bypass. His blood flow was better but the ventricle was weak. It is 3 days later and he is stable but still on ECMO. They are going to see about trying to take him off ECMO tomorrow and I am scared. My son is under weight and has a 1 in 3 chance of surviving once off ECMO. Reading your babies story gives me some hope and I can only pray to God my son survives as your little one did when he comes off. God Bless you.

  2. I found this blog while looking for info from parents about the Norwood Procedure as well. I'm 27 weeks pregnant with a little boy with DILV (another single ventricle defect with the same surgical track). Hoping for the best, and reading through your blog has helped me mentally prepare for some of the challenges we face. I hope the whole family is still doing well, and thank you for sharing your family's story.