Sunday, February 3, 2013

Day 3 - Lily

Lily is our fourth child and second daughter adopted from China.  As a pediatric nurse, a mother to three other children, and a mother of another adopted daughter with medical needs, I felt I was well prepared to parent a child with a congestive heart defect (CHD).  What I now know is there was much I had to learn, understand and accept.  Lily has taught me things about myself, changed my outlook on life, and bought more joy and love to our family than I could have imagined.

Lily has a congenital cardiac defect called Tricuspid Artesia. 

When we first saw her referral picture we knew immediately she was to be our daughter.

If Lily had been born here in the US she would have received surgery at a few months of age and then a second surgery at around 2 years of age.  When we bought her home from China she had, had no surgeries at the age of 2 ½. This is a common situation for orphans in China born with CHD’s.  There are not funds for them to receive the lifesaving surgeries they need.  Some get help from amazing charitable organizations in China, some are adopted like Lily, but many, eventually die from lack of surgical intervention.

Due to Lily’ fragile state, her caretakers did the best they could.  She was isolated from other children to prevent infections, and spent most of her life lying in a crib.  Subsequently when we adopted her, she weighed only 13 lbs., was unable to sit, nonverbal, and only drank milk from a bottle. 

She was also sick with a respiratory infection and very blue from poor oxygenation.  When she was placed in my arms, I would be lying if I did not say I was worried, and a little scared, but mostly what I felt was overwhelming love for this child that appeared so helpless.

I knew she was ours and that she would now have a family to fight for her, to give her a chance at life. The picture on my refrigerator that I had been starring at, and had fallen in love with, over the last 6 months, was now a reality, flesh and blood, in my arms.

Somehow we survived two weeks in China and a 20 hour trip home with her.  On returning to the US she was admitted to the hospital within 2 days.  We were there for 2 weeks.  Sh was given a tube in her nose for food, and supportive care for her respiratory infection.  She gradually began to gain weight; we started to see her personality come out, her stubborn and determined side.  The side that had enabled her to survive the first two years of her life.  She was a fighter.

The plans all along had been to bring her home, and then do the first surgery, the Glenn, and a year later the second surgery, the Fontan.  Tricuspid Artesia is not a curable heart defect, but with surgery she would hopefully be able to live well into adulthood, before needing further intervention.  Once she was stable and well she had a cardiac catheterization to determine what her heart and lungs looked like.  The results were not good.  She had severe pulmonary hypertension (PH), a result of living with her heart defect for so long.  Her lungs had adapted for survival, but this made surgery impossible, she would not survive it. 

The plan – start her on medication for the hypertension and pray it decreases.  PH is stubborn and often doesn’t improve, but it was her only chance for surgery.  Without surgery, we do not know how long Lily’s heart will survive.  Her improvement on the medication was evident.  She gained weight, developed, learnt to walk.  Her oxygenation improved and with it her energy level.  She had become the happiest little girl, smiling, laughing, and enjoying her family and life. 

We were aware that lily’s long term future was unknown, but so are all of ours.  Yes she has a known medical condition, but none of us know when our last day on this earth will be, Lily was no different.  We would make her life as full as possible, and live in the here and now, enjoying every moment. We consciously decided not to spend our days with her worrying about the future, but to enjoy every moment, every little hurdle she would overcome.

She had another cath 9 months later, we were so hopeful for good news, she was doing so well.  I still remember the look on our cardiologist face when he walked out and told us her hypertension was significantly worse, WHAT!! 

Now what?

It was determined that there was nothing, the doctors where we were at, could do for Lily, so we went on a search for a second opinion, for hope.  We ended up at CHOP (Children's Hospital of Philadelphia).  Hope is what we found!!  Although they were honest about the seriousness of her condition, they also said they felt she could continue to be treated and surgery could still happen.  We continued to treat her with medication.  Meanwhile Lily started preK, received OT, PT and speech therapy.  She went on vacation, ate ice cream, and any time she could, swung on a swing.  Life is good and she loves every minute - that kind of joy is contagious.  Seeing life through her eyes is life altering.

January 2012 she was cathed again.  Once again we held our breath.  This time the news was more than we could have hoped for, our prayers had been answered.  Her PH was significantly decreased, to a level where surgery was on the table. Surgery was scheduled for spring 2012, then 3 days before it was cancelled!!  After much thought and discussion by people much, much, smarter than us, it was determined that we should wait.  Although Lily’s PH had decreased to a level that was exciting to everyone, it was still at the very high end of where they would consider surgery, and therefore surgery was risky.  Because she was doing so well, thieving, and developing, it was decided to add a second medication and continue to treat the hypertension, with the goal of getting it even lower.

So that is where we are at.  She is scheduled for a cardiac cath on March 18th, and our prayer and hope is that she will be able to have her first heart surgery this spring.  As much as I want this, and know she needs surgery for long term survival, I wish she didn’t have to.  She is so happy right now; the thought of doing anything that could put her at risk is extremely hard.  We go into this trusting God; He loves Lily even more than we do.

Had we intended to adopt a child that may only ever be palliative? No.

If we had known this before we had adopted her, would we have still said yes? I don’t know.  

What I do know is we have never been given more than we can handle, there is a reason we did not know everything when we said yes to Lily.  Her developmental delays, the severity of her condition, and her inability to get surgery were all revealed gradually.  When I look back over our journey with Lily I know God was preparing us for each twist and turn, and He still is.

Parenting and loving a child with CHD is a gift.

We are so grateful for the love and support of our family, friends, adoptive community, and the other heart mommas out there.  If you know someone with a child living with a CHD, give them a call, offer some encouragement, and a hug, I know there are days they could really use it.

Having Lily in our lives has changed us for the better forever!!


Lisa said...

What a beautiful post, Rachel and what a special girl Lily is! You are blessed, for sure:)

Teri said...

Thank you for sharing. Praying for all of you and your beautiful girl!

amy's mommy said...

Awww, great story!

LaKasha Strickland said...

What a miracle of life that Lily was given when you came for her. God's plan is perfect and he loves these children with a extra special kind of his love. She will continue to be in our prayers and hearts while we wait to see what unfolds in her future. God bless Lily Stella 's heart, life and family!

Jaime said...

Oh Rachel, I had never heard Lily's full story. What a testament of your love for your daughter and your persistence to give her a joyful life. I will be praying as the day approaches in hopes that the Lord will further heal Lily's lungs to allow her to have her surgery. H ❤ P E

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