Wednesday, February 19, 2014

Day 19 - Lily Stella Yeatts

When we participated on this blog last year, we were hoping that Lily would be eligible for heart surgery, that spring or summer. Our prayers were answered! Lily received open heart surgery in September 2013. Her pulmonary hypertension was finally low enough that our cardiac surgeon felt comfortable enough to proceed. Three years after arriving in the US from China, after being told it would never happen, after ups and downs, false hopes and many miracles, our girl made it to one of the biggest days of her life.

Lily’s cardiac defect is tricuspid atresia, and normally requires 2-3 procedures, the main ones being the Glenn and Fontan. Originally the plan had been to do the Glenn (the easier of the two), and if that was successful, do the Fontan a year later, but due to her size the possibility of doing both procedures at once was discussed. Our surgeon was going to make the decision the day of surgery.

We arrived in Philadelphia the day before her surgery and spent the night at the Ronald McDonald House, we were at the hospital very early the next morning. It is hard to express the emotions. The day that we had prayed for, for so long was here, we knew that it was what had to be done, but handing our precious girl over to the surgeon was one of the hardest things we had ever done.  The surgeon told us he was going to make a final decision in the operating room as to whether he was going to do both procedures or not.

We went to the waiting room and waited. Although we were consumed with thoughts of Lily and the moment we would see her again, we felt at peace, we knew there were many people praying for our girl. Within 30 minutes the nurse came in to say Dr. Spray (our surgeon) and completed the Glenn and was starting the Fontan, 20 minutes later it was done – WOW. Just like that, in one hour, both procedures were completed and Lily was doing great.

Lily’s oxygen sats had always been in the low 80’s, her finger nails always blue. When we saw her for the first time her fingers were pink – an amazing and beautiful sight. By the time we left the hospital her sats were 88%, and now are in the mid 90’s. We had been told to expect to be in the hospital for a minimum of two weeks but possibly a month or more – we went home SEVEN days after the surgery. Lily’s recovery was amazing.

We spent two more weeks at home recovering and then Lily started kindergarten. Because of her developmental delays she is in a special class, she continues to be nonverbal, but understands a lot, loves school, plays, and smiles and laughs all the time.

Three days before Christmas Lily had two seizures and has continued to have them, about one a week. We don’t know why yet, she has had several tests and is being seen by a neurologist. Life is never dull with Lily!

Lily is adored by her brothers and sisters. She now has a new brother, Cole, also adopted from China.  He joined our family a month before Lily’s surgery; you can imagine how crazy life was for a few months.

As far as the future for Lily, we don’t know. She still has pulmonary hypertension and remains on medications, which we are hoping to wean. Her surgery is palliative; it makes her heart more livable, but is not a permanent repair. At some point she may need a heart transplant, but our hope is that this is many years from now. We continue to live each day with Lily; focusing on the joy she brings us and those around her.

We are so thankful for all the love, support and prayers of our family, friends and complete strangers. Our hearts are so full of joy and thankfulness for Lily’s miracle. Even with all the challenges we have faced adopting a child with a heart condition, we have not regretted that decision for one moment. Lily brings so much life, love and perspective to our family. Every child deserves a family and should know how it feels to be loved.


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