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, who my eight year old fell in love with and asked repeatedly for us to adopt. A baby, who when we met her did nothing, nothing but lie on a mat and smile. A baby who was two and a half years old, but looked to be six months old and acted like a newborn. Really God? I really think this was meant for another family but okay, I’ll look.
For two weeks we reviewed, and reviewed and reviewed. We looked over a pediatrician review, an international adoption clinic review and five reviews from cardiologists. Her official diagnosis was a congenital heart defect (that means she was born with it) called Tetralogy of Fallot. TOF is made up of four heart defects, a VSD (hole between the bottom chambers), pulmonary stenosis (the pathway from the heart to her lungs is either tiny or obstructed), overriding aorta (the aorta isn’t in the right spot), and right ventricular hypertrophy (the right ventricle is thickened because of pumping so hard). She also had an ASD (hole between the top chambers). Even with all that, TOF can be “garden variety” or very severe. Basically, blood was swishing all through her heart in crazy directions and not enough of it was getting through the pulmonary valve to get re-oxygenated but by golly, that right ventricle was going to keep pumping really hard to try to get the blood through that valve.
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 doctors’ reviews labeled her with global delays, failure to thrive, and they let us know there was a good chance she had a syndrome. Again, Really God??
We just couldn’t do it. We prayed. I cried. But, it was just too much, too scary, too many unknowns. I was to call our agency and say no. 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; I was not at peace saying no to this little girl. Jon (my awesome husband) called at lunch to see if I had told them. I told him 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. 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 six months with our newest son. We 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 which gave us 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 the same night, and just like that we were a family of eight. 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 eight 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. It was then that she was labeled “no surgical options at this time” and too complex. Leeya’s heart cath showed about what they expected for an almost three year old with unrepaired TOF. 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. TET spells is what these babies have, the oxygen levels drop extremely low, sometimes without warning, they can be life-threatening. Thankfully we were now getting her much needed help.
After only having her at home for two short weeks, surgery day came. We were so nervous. 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. 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 six days on a breathing tube and was only extubated because she bit a hole in the tube. 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, she had spots where IVs 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. 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 and made the best of the situation. 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 three medicines, 24/7 oxygen, and an NG tube for all her feeds. However, none of that mattered because she was home. Her happy spirit was back full time, and her five 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 was able 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 improvements. She started rolling over and even stayed in a sitting position sometimes.
She gained seven pounds and started to thrive. It was like watching a miracle take place right before my eyes. We are all so in love with her. She has 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, like the day itself, I will also save for another time. I do know that she left this earth as a treasured daughter and sister, not an orphan. She touched more lives in her three short years than some people do in 93.
I am honored to have been Leeya’s mom. I feel so much hurt 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 five months. There are no regrets, and I would do it again and again, because she was worthy.
– guest post by Andrea