Sunday, November 6, 2011

Halloween and Other Pictures

Mainly pictures today, I'm finally getting some Halloween pictures up, esp since the costumes are so cute. Lillian and the other girls are still doing great, although with a newfound love of candy and trick or treating. Figure next big update will be after the next clinic appointment when we can hopefully put Lillian on twice a day meds and get some more sleep!

Lillian petting a friend's goat

Thursday, October 27, 2011

Lillian's Story - Preparing to Contact our Donor Family and an Update

First of all, I owe all the visitors of this blog (of which there are apparently quite a bit still) an apology for a lack of updates. Lillian has been progressing very well over the past two months, but there is still little to post about. I will at least try to keep pictures updated more frequently though, even if the distance between milestones for Lillian starts to spread out a bit more. I wanted to say thank you to those who still check in on Lillian on a daily basis despite the lack of news, it is extremely encouraging to see you still reading this, and that will hopefully be motivation for me to make more frequent (but shorter) posts.

Kathryn and I feel that an appropriate amount of time has passed at this point that we have begun preparations to contact Lillian's donor family. This is not a task that we take lightly, as we need to balance giving them time to mourn without going so long that they think we have forgotten about them. That of course couldn't be further from the truth; Kathryn and I think about and pray for our donor family on a daily basis, as Lillian is a living reminder of them. But we also understand why they might not want to talk to us immediately or at all, and we wish first of all to be respectful of them and their wishes.

We felt that the best way to start would be to make a video explaining Lillian's story and introducing her to them. The concepts for this video (and indeed our letter as well) have been in our heads for some time, so it is cathartic in many ways to finally commit them to a tangible medium. We hope that they will find some solace in seeing Lillian walking (yes, she has learned a new trick since the last time I posted!), smiling, laughing and playing with her sisters and cousins. While we can never truly put ourselves in their shoes, I honestly believe that if I was put in the same situation as them, that this is exactly what I would want to see. It is little more than a slideshow to be honest; Lillian has gotten quick enough that she's very difficult to photograph now, but it is a visual journey through Lillian's life to this point through our eyes; of her struggles and triumphs, her milestones both positive and life threatening. I hope most of all that it allows the viewer a window into our feelings - the blind fear when she was born; the quiet exhaustion of late nights listening to machines keeping her alive run; the near hopelessness that we felt when there seemed to be no light at the end of the tunnel. But I also hope that you see that we never gave up hope for Lillian, the excitement to come into the hospital every day and see her, whether it was lying and paralyzed or sitting up and giggling. In many ways the feelings were both positive and negative at the same time; such as the feeling of seeing the end of the tunnel on transplant day mixed with the deepest sorrow for our donor family. One final note - please watch this video with sound, the songs that play are the ones that I listened to before giving Lillian to the surgeons; unsure of if I would see her again. They are in many ways her songs.

Now that you've watched the video, I wanted to point out something that we stumbled upon during the creation of the video. While we were making the video and running the test runs, it was striking to see the dramatic difference in the technical quality of the photos both before and after transplant. This is entirely due to the generous gift of a DSLR from a family member, but I found it a fitting metaphor to see the dramatically improved lighting and subdued noise in these pictures that matches how we saw our outlook for Lillian brightened and we came out of the darkest parts of her life during the same time period. There are other subtexts as well, both accidental and intentional that I won't ruin at this time and will let you discover on your own.

Now, to Lillian today. As you read above and saw in the video, Lillian is now walking quite well. She didn't take to it as quickly as Annabelle did, but now that she has, she has been walking around our house with a look on her face that says "Oh yeah, I'm the boss now!" She's still a little unsteady and walks bowlegged, but she's quick and more comfortable every day. And she relishes the fact that Annabelle treats Lillian walking towards her as "Lillian's coming to get me", much to Lillian's enjoyment.

We've also made major strides on eating. While we're still trying to pack the pounds on her (in part by feeding her whole milk mixed with heavy whipping cream), she has gotten slightly less picky and we've discovered a love for beef and other meats that has been extremely useful in getting her to eat. Still struggling though to figure out how to get around her aversions to anything slimy or at a temperature slightly above lukewarm, but she is eating a better and more varied diet (for her at least, any nutritionist would shoot us for giving her straight whipping cream with strawberry flavor; but it's good for her specifically).

On the numbers front - Lillian's labs came back (today in fact) better than they ever have been. Her Cyclosporine levels are slightly on the low side but within range, and those can be attributed to her weight gain (she's around 21.3 now). But her BNP levels are lower than they've ever been (37), and her kidneys are in phenomenal shape due to the amount of liquid she's been drinking. All in all, we're very happy with the numbers, but we will probably change the Cyclosporine dose next visit, hopefully to twice a day if we can finally get her to cross 22 pounds.

In other small news, Lillian has discovered the wonder of a hot shower, we can't even take one now with her hearing it from across the house and doing everything she can to get in, clothes or not. She is getting more vocal on a daily basis (although she is still not talking; she is behind Annabelle, but that is not entirely surprising   considering) and we hope she'll start talking soon as her yelling has gotten... shrill. She is in just about every way a normal child who is a teensy bit behind in speech and has to take medicine 3 times a day. Kathryn and I are more than happy with making it this far.

Yes, I know they're not all using the same controllers, we ran out

Saturday, August 13, 2011

Update and Tons of Pictures

Not much going on right now, which is of course, a good thing. Lillian had one small incident where she had to go to the hospital for a suspected broken finger due to her sister smashing her finger in the door, but it turned out to not even be a fracture, so she got lucky on that front. Other than that, Lillian continues to eat and take meds like a champ, and she is getting better (and faster) at crawling, pulling herself up and walking around objects (tables and such) by herself. We hope to have her walking in the next two months.

We have been slowly expanding our horizons with Lillian, going to a family wedding the other day and seeing Lillian's main cardiologist from before the heart failure, who has followed her since as well. She sees her cousins regularly, and if you can't see the scar, looks like a normal kid (so much so that when we went to the ER for the finger, we were congratulated by several staff members for having "normal people issues". Biggest problem Lillian has is the sore finger and dealing with Annabelle, who can be a little too affectionate at times.

In terms of Lillian's health, she does sleep a ton (14 to 15 hours a day) and tends to be a demon when she is tired. Her eyes also appear slightly sunken, but I think that is a side effect of the meds she is on. Finally, we were blessed by a family member with a new camera, so enjoy the great pictures below (as always, click for big version).

One of Annabelle, just to illustrate Lillian's day to day entertainment


With cousin Robert (and ball)

Ailah with her great grandma

One of Lillian's favorite toys (a slide).

Slightly fuzzy due to crazy movement, but a priceless expression

A calmer version

Chilling with Mom on the ferry

Ailah sleeping at the wedding

Lillian with Dr. Files

Lillian with her 2nd cousin Kendra

Annabelle dancing with Kendra and Katana

Saturday, July 23, 2011

The Biggest Milestone Yet - Lillian's First Birthday

We've hit what I think is one of our biggest milestones yet - Lillian's first birthday. Getting a heart is the only other major contender, but this day in particular is specially because we were never sure today was going to happen. It was almost surreal seeing Lillian in that seat today, especially since I remember pictures of Annabelle that look exactly like the picture above (note that I'm having problems finding them right now, otherwise I would have posted them; I blame my shoddy picture organizing). It's a huge mental milestone for us to have hit today.

I realize as I write this that I have forgotten to post about another important milestone. I'll give you a chance to figure out what it is first: go look at the pictures of Lillian in the last post, and then look at this one. I'll post one more to help:

If you're still guessing, we've removed her feeding tube entirely. I must admit this isn't entirely with the blessing of Seattle Children's, but we reached a point about 3 or 4 days ago where Lillian simply refused to leave the tube in any more, and we had to choose between antagonizing her by placing it constantly, or just accepting the ineveitable and moving on. So the tube is gone. Lillian is eating and drinking entirely by mouth at this point, although we have to bribe her to drink with apple juice and chocolate milk. And yes, we know she is far too young for this, but when you have medical conditions as serious as Lillian, it's ok to pack on a few extra pounds at this point in her life.

It is both encouraging and difficult to write this post. On the one hand, the last remaining reminder of Lillian's condition that others see are the scars, and those will fade over time. I cannot tell you what a blessing that is, and how unreal it is at this point to be able to walk into the store and not having people walk up asking what is wrong with Lillian because they can no longer tell that anything is wrong. Now we just get looks because we're in the low 20's and we're carting 3 kids around. I can't remember the last time I was able to do that. On the other hand, as I write this, I can't help but think about a Seattle family who lost their 9 year old today due to a 15 car accident earlier in the week, another transplant family in Tennessee who are at the hospital with complications that they don't yet have a cause for, and our own transplant family, who are spending today without their child while we spend today celebrating ours. Yet another family still waits for a donor after spending over a year on the list. I would ask that you keep all 4 families I mentioned in your prayers, as they either still have reason to worry or are in one of the darkest periods in their lives. Even as we finally have a day to celebrate, we have not forgotten you, or the families that we have lost touch with, yet we know are going through similar situations. Today has been a humbling experience.

Lillian with Aunt Kim

I swear Annabelle is smiling in this picture.

Monday, July 4, 2011

More Good News - Major Steps Forward!

It's been a while since I've had time to post, but we haven't been sitting around in that time! Lillian has made some big steps forward in the last couple weeks. The first that I will mention is eating, as you can see above. Lillian seems to have finally gotten over her aversion to oral food, and has been not only accepting solid food, but demanding it. She started with yogurt melts last week, and has progressed to the point where yesterday alone she added 7 new items to her diet (including mandarin oranges), and seems to be limited only by the  lack of variety at the store and the limitation of having no teeth. She also loves graham crackers, flavored puffs, and wheels. Berries and small fruit that we can put in a baby safe sucker are also a hit.

Normally solid food alone would be enough to warrant a post, but Lillian has made more progress than that. She has also gone from begrudgingly taking small amounts of liquid via syringe to taking full on sips from a sippy cup. It's messy, and usually ends up with a 5 foot circle of milk surrounding her, but it's progress none the less. Formula is still a no, and we've all but given up on that, but we hope that if she will take whole milk and eat solids, we will get the OK to remove the feeding tube (nurses reading this - try and plant this idea subliminally in Dr. Law's head). Dr approval is the only thing we would need at this point, on the trajectory she's currently on, we could have her taking everything (meds included) orally and finally remove the feeding tube. With that gone, it would be next to impossible to tell that she isn't a normal baby/toddler, as her mannerisms and behavior otherwise are rapidly catching up to where a healthy baby would be.

But we're not done yet - Lillian has made even more progress lately. Last Saturday (yes, two days ago), Lillian finally figured out how to get over her leg and has started slowly crawling around. The mobility is limited at this point as she is slow and needs major motivation (i.e., food) to get to the point where she will even attempt it, but as she figures it out, we expect that she will soon be powering around the house with her new-found mobility. Lillian has also made major progress with standing. She is only at the point of holding onto a fixed object, but every day, she is more stable and able to stand longer before falling.

With a little more time, she'll develop the eating/drinking/crawling and will be at a normal level of development. It feels so alien to say such a thing, but hoping things go well, it seems like it is finally on the horizon. We consider ourselves lucky to say that, as many families never get to this point. It isn't easy having 3 little girls, especially since they all have personalities like Annabelle (strong and belligerent), but it is a blessing to see their bright eyes and smiles every day. For those wondering about Ailah, she seems to finally be getting over the cold Annabelle gave her weeks ago, which will hopefully help her (and us) sleep a bit better. She is already drinking more than Lillian is (8 ounces every 2 hours compared to Lillian's 5 ounces every 4 hours, plus various snacks). All 3 are developing very quickly and are already getting hard to keep up with.