Saturday, March 24, 2012

Lillian's Heart Birthday and First Biopsy

Today is a huge milestone for us - Lillian's one year anniversary! We are thrilled that Lillian has done so well over this first year. Looking back, we never in our wildest imaginations thought that she would be doing as well today as she is. But we're thankful to be wrong on this one! To anyone who sees her on the street, she looks like a completely normal (if slightly hairy) child, and you would need to see her rapidly fading scars to tell otherwise. I guess the only thing we could wish for at this point is for her to stop communicating via high pitched screams and start talking. But we're certainly happy with the progress she's made. It's hard to believe that this is how she looked a year ago today (at the same time this post was... er... posted).

7-24-11 @ 2:33 PM

vs today:

She's made a staggering amount of progress in the year, matching a normal child's growth more closely than the expected growth of a transplant patient, which is a huge accomplishment. Lillian loves being at home now, and spends as much time as possible making messes (her favorite game is dump the bucket) and playing with her sisters.

Part of the post transplant treatment involves yearly heart tissue biopsies as this is the only way to actually check for rejection. Lillian had her biopsy last week, and I'm thrilled to say she passed with flying colors and no rejection. We do have some concern about her aorta getting a tad smaller around the graft points, but this is typical and just something we will be watching at this point. Overall, we're very pleased. 

While today is a very happy day for us, we're also tempered out of concern for our donor family today. A year ago, they gave us a gift that changed our lives, but one that only came at a time of terrible loss for them. While we have not heard from our donor family yet, and at this point don't expect that we will; we are eternally grateful for them, and hope that the idea of their child saving several others helps them with the pain of this time. In thanks to them, please enjoy again Lillian's video covering her hospital stay.

Finally, I think a big picture dump covering her first year is in order. Some you've seen before (especially if you're friends with me on Facebook), but I can't think of a better way to show how she's grown than to show you pictures of her.

3-24-11 - Up early in the morning waiting for transplant.
In the back waiting to go to surgery
A surgical assistant taking Lillian back
3-28-11 4 days post transplant and not in a fantastic mood
3-31-11 - 7 days post transplant and much happier

4-2-11 - Out of ICU and sitting up in a surgical ward
4-14-11 - Discharge day, Lillian with some of her main nurses
Finally! Going home!
4-16-11 - Lillian has been home for 2 days and is starting to get used to it
4-19-11 - Lillian's first (home) sink bath
5-28-11 - Back in the hospital due to a nasty flu/C Diff
6-9-11 - Look at me, finally a supported stander!
6-19-11 - Lillian being goofy
7-2-11 - One of Lillian's first experiences with the sun (delayed due to sensitivity to sun caused by meds). She reacts like any good ginger should!
Enjoying a bath (now one of her favorite things) later that day
7-4-11 - The girls all dressed up for the 4th.
7-23-11 - One of our first big milestones - Lillian's first birthday!
8-6-11 - Lillian playing with cousin Robert
8-8-11 - Back in the bath again (we do bathe her more often than the pictures would suggest)
8-11-11 - Lillian with one of her cardiologists, Dr. Matthew Files. As always, this is one of my favorite pictures that I've ever taken.
9-23-11 - 6 months post transplant
10-23-11 - I'm always thankful for Lillian's willingness to sit still and pose for a photo, especially since Annabelle refuses to ever sit still.
10-28-11 - At a friends for an early Halloween party in one of Mom's funky outfits.
11-17-11 - Another classic pose
11-22-11 - More of Lillian's playful side
11-30-11 - Look at how that scar has healed
12-9-11 - With little sister Ailah
12-21-11 - It's safe to say pudding is only after fruit snacks on Lillian's list of favorite things
12-23-11 - 9 months post transplant with an early Christmas present
1-13-12 - Lillian's first snow day
1-21-12 - Lillian has consistently awesome post shower hair
2-3-12 - Lillian enjoying the winter sun in our yard
Back with cousin Robert again
2-24-12 - Gogurt, yet another of Lillian's favorite things

3-11-12 - At the aquarium with Annabelle. This was exciting for Lillian to say the least, who threw a fit if we spent less than 20 minutes at each and every exhibit/tank
It's been a interesting first year post transplant. Here's hoping for health and adventure in her second year!