Lily's Journey to a Stronger Heart - 9

First we just want to say thank you to all of you that have prayed for us, sent us messages, and showed your love and concern for us over the last few days - it has meant so much.

I apologize for not posting sooner, but we have had a lot to process since the cardiac cath on Thursday.

As you know Lily has been on Sildenafil (viagra) to treat her pulmonary hypertension(PH)since early December. We have seen very positive results since she has been on the meds. Her oxygen sats have increased from the 70's to mid to upper 80's, she is less blue, full of energy and overall very healthy. Developmentally we have seen her learn to sit, scoot on her tummy, use signs to communicate, start to eat food and say momma and dadda (which she said first) - which you can imagine was indescribable to finally hear.

Because of her improvement our cardiologist decided we should do another cardiac cath to see how her PH was doing, we were all extremely hopeful it had come down - the results we actually got were completely unexpected and very hard to hear. Her PH actually increased and increased quite significantly. As a result our cardiologist told us, she would never be a candidate for surgery, and we now needed to just teat her medically and let things take its coarse - she has a hole in her heart which is getting smaller if this closes they would go in and place a shunt as she needs the hole - bottom line we need to provide her with the best quality of life we can for as long as we can. As you can imagine this was all very hard to hear, since returning from China and finding out about her PH we have always known that her diagnosis could be poor, but we had no idea we were there yet - surely there is more to try and do.

So after several days to process where are we now?

1. We know God is the same God yesterday, today, and tomorrow, He knew what the results were going to be, and He has Lily in His hands - this is all apart of the journey.

2. God gave Lily to us to be her parents, and as her parents it is our responsibility to advocate for her.

3. We are going to get second opinions, we will go see the top doctors in pediatric pulmonary hypertension and cardiology, and see what options we have. We may end up back here with the same results, but at least we will feel secure in what we are being told, and will know we did everything.

4. We have no idea how long Lily is supposed to be here with us, but for however long that is we are going to enjoy every moment, balance looking to the future with living now. What we know is - RIGHT NOW she is the healthiest she has ever been, she knows love of a momma and dadda, brothers, and sister, extended family and friends. She smiles, laughs and plays, and brings joy to everyone that meets her.

Thank you again - as soon as we have more concrete plans we will be letting you know - it means so much to know we are not on this journey alone.