Friday September 24th we finally heard back from the cardiologist. They had a big meeting that day with all the cardiologists and the cardiac surgeon to discuss Lily.
A lot of what he said to us is very medically confusing so I won't even try to attempt to repeat it here.
The bottom line is they have a LOT of concerns about moving forward with surgery at this point. The damage to her lungs from living with her heart condition could be life threatening if they proceed.
If they did nothing history shows she could live 15-30 years - the last 10 of which she would become sicker and sicker - is this something we are willing to accept - NO!!!
So what now - well there are options, medication or possibly another surgery to improve the issues with her lungs.
At this point nothing is ruled out not even the original surgery - our cardiologist feels if there is something we can do to give her a good shot at a longer, and better quality of life then we need to take it - we are in agreement so now he is sending her information to trusted colleagues at UVA and DC Childrens for 2nd oppinions.
So now we wait again.
Is this what we were hoping to hear? NO way
Did we ever think when we adopted her that she could be inoperable? NO way
Would we change anything? NO way
We love her, she is a Yeatts, no longer an orphan - we will fight for her, love her, and do everything in our power to see her strong and healthy.
As Christians we are trusting in God. We know He lead us to her. We know He has the power to heal her body. We know we are on this journey for a reason.
We are not in a place of dis pare, but a place of hope and faith. Of coarse this was hard to hear, yes we shed some tears, yes we asked God why.
We didn't have long to absorb the news or dwell on it, as almost immediately our house was over run with 8 boys, here to celebrate Ethan's 10th birthday - so it was off out to laser tag, and then a sleepover - this was actually just what we needed - lily was so funny and playful, enjoying every moment of it - and so we were gently reminded that daily we get to see little miracles in lily happening right before our eyes.
Where once she could not even tolerate sitting on our laps she now loves to sit in her boomba chair, holding her head up without it bobbing around.
Where once she only made one sound she now babbles, smiles and laughs.
Where once she was frail and only weighed 14.5 lbs she is now strong, and weighing 19lbs.
So now we keep on doing what we have been doing - living our life daily, seeing Lily growing and getting stronger. Enjoying every moment we have, not loosing the moments by being preoccupied waiting for doctors calls, and wondering about the what ifs, instead treasuring what we have been given - for she is a gift of immeasurable value.
4 comments:
I am new to following your blog. I found you because someone cross posted you on FB today. I don't believe in coincidence. I believe everything happens, guided by His hand, for His purpose and Glory. That being said, I too have a Lilly. Our daughter, Lillian Grace, was born to us 3/13/09 just as God designed. 34weeks, 4pounds, Down syndrome, multiple congential heart defects and severe pulmonary hypertension. She had her first heart surgery, a coarctation repair, at Mayo in Rochester,MN in her second week of life. The plan was to wait until she was bigger to do open heart to repair her 7 VSDs and 2 ASDs. When that surgery took place her pulmonary hypertension would reverse and she would do fine. After 6 almost 7 months as an inpatient in heart failure we were told she wasn't viable. She wasn't a candidate for Open heart as her pul.hypertensin was so severe she would die on the table or within 2 days post op. We were also told she wouldn't live until Christmas without surgery (it was late Aug). We were advised to love her while we have her. My faith is bigger than that, and I know my God is bigger than that.
As I read your post, it takes me back to that office where we waited for the cardiologist to come and talk with us after my Lillian's cardiac cath. I relive the emotions of that days. My heart aches for you and your precious Lily. But God has brought me to your blog this day to encourage you. When we were givin Lilly's fate that day I turned to God through prayer. In the days that followed He went to extraordinary lengths pursue me,to encourage me, and to guide me to where He wanted me to go. His hand took us to Children's hospital of Philadelphia and 2 wonderful doctors that are considered the best in the world. First was Dr. Brian Hanna, cardiologist specializing in pulmonary hypertension. The second is Dr. Thomas Spray,rated #1 pediatric cardiac surgeon in the world. God used the skilled hands and passion of these men to save our Lillian. Today our Lilly is 18months. She has a perfect heart and no evidence of heart disease or pulmonary hypertension. She is on no meds or oxygen. I want you to know I am praying for you, truly. So many say it just to say something. I am really praying for your family. I encourage you to seek help and a 2nd opinion at CHoP and Dr. Hanna. If you want contact info email me at savinglera@yahoo.com. I will leave you with this. When we arrived at ChoP, so far from home, having so many family and friends tell us we were crazy and stupid to go half way across the country,hoping and praying for a miracle, I was greeted by a large sign at the front entrance. It read...HOPE LIVES HERE. It's true.
In Christ, Diane
A friend recommended your blog when my newly adopted son developed refeeding syndrome. I also have a son with PH. He spent 2 1/2 years on home oxygen and various meds. I hope that you find answers and healing for your daughter.
Just a shout out by a lurker... a term that makes me feel a little sleazy! Ive been drawn into your story too, not even sure how I happened upon your blog- I do have a daughter adopted from China and follow many special needs adoption blogs. I'm just sending you- and of course Lily- my thoughts and prayers. Ive also heard amazing stories of children, even older than Lily, with severe heart disease and high ph nonetheless saved by surgery. Hang in there and seek more opinions if you can. Precious lily needs to bloom.
You and Lily continue to be in our prayers. May He give you the strength, patience, and assurance you need, and may He give Lily healing in HIS time. I am encouraged by your trust in Him, and in the strength Lily has gained these past two months. Just as I know He orchestrated our match with Ami, I am sure He orchestrated your match with Lily, for a reason. The K-Love verse for today was Rom. 8:28: "And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them."
Blessings,
The Davises (travel group 168a)
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