Things to clap about and things to pray about

A little recap/update since we last checked in:

On August 17, exactly two years to the day since we received Stella's CHD diagnosis, we had a big morning of appointments at the hospital to follow up on Stella's heart and neurological development. Stella's first open heart surgery was when she was 2 days old and we will never know how being put on bi-pass that early (or again at 4 months) affects development, but we are grateful for the therapies she receives as a result.

Six months ago the Neurology Attending was concerned about Stella's gross and fine motor development, as well as speech. The term he used was "developmentally delayed" (which made my head explode) and recommended we turn up the faucet on her therapies. I have the most respect for her doctors, but in my opinion Stella just didn't feel like playing their games/doing their tests that day. Her occupational and physical therapists agreed and we pretty much stayed the course we were on. Stella doesn't miss a BEAT, and she doesn't do anything she doesn't feel like doing. 

In the past 6 months Stella has taken off. She not only walks, she RUNS. She jumps, she has promoted herself out of a high chair to the big kids chairs, and she talks non stop. Girlfriend is bossy. Needless to say, when we walked into the appointment on August 17 Stella did not disappoint. Little miss show-off chatted it up, passed every test with flying colors and was labeled "thriving developmentally". GO STELLA. (But no, you still cannot go off the diving board at the pool. Stop asking). 

We also had an echo to check on her heart and everything remains stable. Her two valves have the same leakage that we saw 5 months ago, which she can tolerate for now. We are grateful to walk into cold and flu season with a stable report and pray it remains just that!

As happy as we are to "celebrate" a good appointment, we remember that "stable" doesn't mean healthy. Stella has half a heart. She is missing the more important ventricle we all have and need, and will never be healthy. Her oxygen saturation hovers around 80% ... a healthy adult hovers around 96-99%. The fact that she is thriving at 80% is proof that God has made her to be one resilient little fighter. She is my actual hero.

And with that said, we also have a new prayer request for a friend. One of the pastors at our church has a 2 year old niece in Seattle, Anna, that has the same CHD diagnosis as Stella and is waiting for a heart. We don't know her family personally, but I've read her story and it's hit all of us hard and made us realize how fortunate we are that Stella is stable. Similarly, Anna remained stable after her 2nd surgery until this summer when she developed a blood clot that burst in her heart (something that could easily happen to Stella or any kid with HLHS). She's had numerous strokes, seizures and has nearly died countless times in 3 months. She is Status 1a on the transplant list and she NEEDS a heart, asap. Her family is a strong, praying, Christian and get this - they adopted Anna. They CHOSE to bring home a baby with a broken heart and a life long battle with CHD. Please pray for this sweet child and her family! 

Below - the reasons we clap, pray and sing hallelujah ... and pictures of sweet Anna to keep in your fervent prayers.