Monday, February 22, 2016

Day 22 - Leeya YanQi

A “heart mama”, what a title!  I had read stories of these brave women and cried trying to understand how hard that must be, to have a heart baby.  And, in the adoption world, to choose to have a heart baby, that was even harder to wrap my head around.  I admired them so much but I could never be one, I didn’t have what it took, our family couldn't handle that.

But then, I found myself holding the file of a “heart baby”.  Not just any baby, a baby that we had met on our second adoption trip.  A baby my 8 year old feel in love with and asked repeatedly for us to adopt her.  A baby, who when we met her did nothing, nothing but lay on a mat and smile.  A baby who was 2.5 years old but looked to be 6 months old and acted like a newborn.  Really God?  I really think this was meant for another family but, OK, I’ll look.

For two weeks we reviewed, and reviewed and reviewed, a pediatrician review, an international adoption clinic review and 5 reviews from cardiologists.  Her official diagnosis was a congenital heart defect called Tetralogy of Fallot.  TOF is made up of 4 heart defects, but even with all 4 defects it can be “garden variety” or very severe.  This little one also had and ASD to go with the TOF.

Other official diagnoses were corneal dermoids and severe cerebral palsy.  Her file also threw around terms like hydronephrosis, citrullinemia, bronchitis, pneumonia, lag of brain development and it said she had a weak spirit.  Our doctor reviews labeled her with global delays, failure to thrive, and they let us know there was a good chance she had a syndrome.

We prayed.  I cried.  It was just too much, too scary, too many unknowns.  I was to call our agency and say no.  So the next morning I tried to call but I couldn’t dial the number.  I tried to email them but I couldn’t even type the words, much less hit send.  It didn’t feel right; there was no peace inside of me to saying no to this little girl.  Jon (my awesome husband) called at lunch to see if I had told them, I said I couldn’t, and he said, “Good, I don't want to either”.  So……

WE SAID YES!!!  A little bit scared but with 100% confidence that it was the right decision.  Having seen her face and picked up her delicate little body while we were in China made it impossible to say no to the scary.  This was a child, not just a stack of medical papers.  So, I took off running down the expedited adoption path because this little girl, our little girl, needed help fast.

We decided that Jon would travel alone, it wasn’t ideal but we had only been home 6 months with our newest son and didn’t feel like he was ready for us both to be gone for that long.  Our little girl, Leeya YanQi Grace, was placed in her Daddy’s arms on Sept. 14, 2015.  No matter what happened from that point on, she had a family.

He did a wonderful job taking care of her on his own; he even kept bows in her hair every day for me.  She had to be fed with a syringe because she had no suck reflex, she was so tiny and frail.  She didn’t do anything other than lie there, make odd noises and play with her fingers.  And smile, she always smiled. 

Finally, on Sept 26 they landed back in the US.  I flew to Chicago to surprise them and have a few hours together before introducing her to the rest of the family.  It was love at first sight; she was absolutely perfect and could do no wrong in my eyes.  We made it back to Nashville that night and just like that we were a family of 8 and I was officially a “heart mama”.

We got 36 hours at home before the doctor appointments started.  We were the first appointment in cardiology on Monday morning.  She was very uncooperative for the EKG and ECHO so there were no clear answers from those.  A heart cath was scheduled for 8 days later.  She had lots of blood work that day, a CT scan, and a chest x-ray.  Not only was Leeya a heart baby, she had a lot of other stuff going on. An anesthesiologist said “She is so special, it is going to take a long time to figure out all of her medical secrets.”

We were nervous going into the cath, she had only had one done in China and she crashed afterwards and that was when she was labeled “no surgical options at this time” and too complex. Leeya’s heart cath showed about what they expected for an almost 3 year old with unrepaired TOF and the doctors considered doing surgery the next morning but a transplant heart came in for another little one so we scheduled surgery for one week later.  We did stay overnight for observation and it was pretty unnerving rocking her at the hospital that night listening to the alarms as her O2 levels would drop into the low 50’s. 

After only having her at home for two short weeks, surgery day came.  We were so nervous, this felt so much different than when we sent our son for palate repair.  She was the first patient scheduled that morning so she went back at 7am.  We didn’t see her again for about 12 hours.  The surgeon was pleased overall, even though he was not able to save her pulmonary valve as he had hoped and he decided to leave her ASD open to allow blood to continue to flow through it while the heart adjusted to it’s new way of beating.  It took them quite a while to get her stable that evening.  It didn’t take long to figure out that she was taking the more difficult recovery path that we had been told was possible.

She spent 6 days on a breathing tube and was only extubated because she bit a hole in the tub.  Leeya spent 11 days in the PCICU.  We had consults with PT/OT and feeding therapy, general surgery to check for Hirschsprungs disease, ophthalmology to check her corneal dermoids, genetics to discuss a possible syndrome – 22q had been ruled out but now they were thinking Waardenburg syndrome, infectious disease because she had an antibiotic resistant strain of E.coli, wound care because fluids were keeping her skin stretched so much that it was tearing open and she had spots where IV’s had been that had to be treated with burn medicine, and of course, she got a very yucky yeast infection.  Once she came off of the sedation meds she went 60 hours with no sleep even with multiple doses of melatonin.  She had more x-rays, blood draws, and other procedures than I can recall.  But, she fought on and as long as there were no “white coats” around she smiled and laughed. 
More than once I had a doctor look at me and ask “Did you know she had this heart condition when you adopted her?”  I would give tell them the story of meeting her and how we made the decision to adopt her and I would remember how I just a few short months ago that was me, wondering why someone would willingly take on all of “this”.

I also got asked “Do you have a medical background since you adopted a child like this?”  “Nope, none at all”, I would say followed by “I would probably be a lot more worried right now if I did”.  The medical stuff was scary but being this little girl’s mama was not, she had me there beside her, she didn’t have to fight alone anymore.  Finally, after a total of 23 days in the hospital we got to take her home. 

She came home on 3 medicines, 24/7 oxygen and an NG tube for all her feeds but that was all OK because she was home.  Her happy spirit was back full time and her 5 siblings were thrilled to have their baby back.  We only ventured out for doctor appointments or therapies the first month back home.  Thank goodness for online Christmas shopping.  Her first post-op check up was good and she got to come off one medicine.  The doctor decided to leave her on the oxygen until spring, through cold/flu season, just so that her heart wouldn’t have to work quite so hard.  She didn't like going to therapy but we were seeing small improvements, she learned to roll over and she could even stay in a sitting position for a little bit, but she didn’t like it much.

She gained 7 lbs. and we had to cut back on her feeds a little so she wouldn't get too wide.  It was like watching a miracle take place right before my eyes.  We were all so in love with her.  She had such a happy, joy filled spirit and I am thankful each day that we didn't give in to fear and say no to being her parents. 

She is worthy of love, worthy of family, worthy of being given a chance at life.  No matter how long that life may be.

On, January 22. 2016 our little Leeya passed away.  She went into cardiac arrest at a local hospital as we were trying desperately to get her to the children’s hospital.  The details of that day I’ll save for another post.  Her heart was so very tired.  Even on oxygen her O2 levels hung around 78-85, her right ventricle was just worn out.  She had just seen her cardiologist 10 days prior and there was nothing to make us think this was coming. 

My heart shattered that day.  We were left with so many unanswered questions, what-ifs, and why now?  Things I will never know or understand this side of Heaven.  Those feelings I will also save for another post.  I do know that she left this earth as a treasured daughter and sister, not an orphan.  She touched more lives in her 3 short years than some people do in 93.  I am honored to have been Leeya’s mom.  I feel so much hurt but I know that’s because I felt so much love.  I wish I could have been her Mom for longer but aside from that I wouldn’t change anything about the last 5 months, there are no regrets and I would do it again and again, because she was worthy.

And Sam Makes Six


MartaJoy said...

Oh my goodness! The tears won't stop flowing! Wow....I'm so sorry for your loss and thankful for your gain. She was so very blessed to have a family and a mama like you. This is so beautiful.

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