What's next for Lilly?

It seems like for most of Lilly's life, our focus for her was to get her big enough and stable enough for the heart surgery she so badly needed. That was finally done earlier this month and she is recovering nicely.

When we walked out of the hospital with Lilly 9 days after surgery, it was such a relief! I'm a goal oriented person though, so I did find myself thinking "what do we work towards next?"

I wasn't the only one thinking that. We've had a number of people ask us what was next for Lilly. More surgeries? Therapies? What?


One misconception that I need to clear up first is that even though Lilly's heart has been repaired, it doesn't make her Trisomy 18 go away. She will always have that. It is an extra 18th chromosome in EVERY cell in her body. This means she will NEVER have a normal life expectancy. She's one of only 5-10% that has lived past 12 months.

We will always have to be careful with Lilly because she can get sick so easily. She will always have huge mental and physical challenges. She will probably never walk on her own. She may never be able to say a few "real" words. She may never feed herself and may always need the g-tube. We will always need to take care of her most basic needs.

So in the eyes of many in the world - what good was the heart surgery? It was wonderful! It gave Lilly a heart that now functions normally. She now can breath easily and that gives her more energy and she shouldn't burn calories so crazy fast. She no longer needs oxygen at night. Lord willing if/when she gets another virus, her poor heart won't start to quickly fail.

So what is next for Lilly? Well we don't honestly know. We don't currently have any surgeries planned for her. As far as we know things inside her are working pretty good right now. We'll keep up with doctors checkups.

So the big plan is just to continue to love her. To help her live each of her days to the fullest. To go as far as we can with her therapies, which she loves so much. To hold her, hug her, and give her lots of kisses. To let her touch the lives of others and share with them God's grace in her life.

Lilly is consistently the most joyful person in our household. Her smile makes our day. She is our treasure. Our gift from God. There isn't anything that any of us wouldn't do for her. And however short - or long - her life is with us, we will continue to love every minute.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Philippians 4:6-7