Sunday, March 20, 2011

Quick update on Lily

So it's been 10 days since her cardiac cath and I feel like life has been on fast forward. Thank you to all of you that have offered advice, prayers, words of encouragement, and information on your own experiences with your children with heart conditions. It has all meant a lot, and has contributed to getting us to the place we are at now.

We have been in contact with Children's Hospital in Philadelphia (CHOP). They are ranked number two in the nation for pediatric cardiology, and number one for pulmonology, they are only a four hour drive from us, they have been recommended to us by many of you, and we feel confident if there is another answer then that is where we will find it. They responded within two hours of us contacting them, we have already been very impressed with there professionalism, care and concern. On Thursday we had all of Lily's test results fedexed to them, once they have reviewed them they will set up an appointment.

It looks like they may do another cardiac cath. What we know about the last one is that they had a hard time sedating Lily, so she was awake and fighting through most of it, this could effect the accuracy of the results - we will see. There is a doctor at CHOP that specializes in PH, so we know that whatever we are dealing with we will have the expertise we need.

FYI - Lily is happier than we have ever seen her, laughing and smiling all the time -she makes this journey a lot easier to bare for her momma and dadda - rejoicing and thanking God for all the little miracles we have already seen.

Saturday, March 12, 2011

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.