written by Summer Spitz, Belle & Lyla’s mom

It is my honor and privilege to introduce my two amazing daughters, Isabelle & Lyla! Both of my girls are Heart Heroes! I want to tell you their story from the beginning. In May of 2010, I saw a beautiful little girl who was photo-listed on the Reece’s Rainbow website. Reece’s Rainbow is an amazing ministry that advocates for orphans with Down syndrome. As soon as I saw her, I knew instantly she was my daughter. I didn’t even read the little biography that accompanied her picture. I didn’t care what it said. It didn’t matter. I just knew she was meant to be a part of our family.

My husband and three teenage biological children needed some convincing. They were pretty shocked that I was even considering adopting a little girl from Ukraine with Down syndrome. They had many appropriate concerns. I had promised that precious girl via prayer that I would do whatever it would take to bring her home as soon as humanly possible, so getting my family on board was priority. I decided to read her bio so I could get all the information I could to discuss with the rest of the family. Her bio said that she had a complete AV Canal Defect and severe Pulmonary Hypertension and she was missing her left hand. We had absolutely no experience with heart or lung conditions nor did we have any experience with any type of limb difference. But again, it didn’t matter to me what that bio said. I just needed to get her home to be loved!

Finally, we were all on the same page and we committed to bring Lyla home on June 8, 2010. We started working hard to get her home as quickly as possible. We received a call just weeks before traveling to meet her that she was very ill and in the hospital ICU in Ukraine. We were DEVASTATED! We were madly and deeply in love with this little girl that lived across the ocean and now we were told we couldn’t bring her home. We were heartbroken to say the least.

We were told that the doctors in Ukraine would not operate on her heart. That they didn’t believe she would survive the surgery. I contacted a cardiac surgeon that travels to Ukraine to help little ones with heart issues. I begged him to see Lyla, but unfortunately since we did not have any legal rights he could not help us. So we waited.  And waited! Praying she would recover and we would be able to bring her home. We continued to wait until our adoption papers were about to expire. We decided to continue our adoption journey of a little girl with Down syndrome, but tragically it wouldn’t be Lyla coming home to our family. I could not and would not choose another little girl from the never ending list of orphans with Down syndrome. So my incredible husband stepped up to the plate and chose another little girl. A girl I had looked at dozens of times when on the Reece’s Rainbow website. A girl I often wondered “Who is ever going to choose her?” Well, my husband was the answer to my question. I knew I wouldn’t be able to love this little girl as my heart belonged to Lyla.

We met Isabelle on December 22, 2010 in Simferopol, Ukraine. The moment she was placed in my arms – I felt it – I was her Mom and she was my daughter. Could it be that a sick little love in an ICU somewhere in Ukraine led us to our daughter, who was always meant to be in our family? It was surreal! I was shocked that I fell in love with this beautiful little girl so instantly. My husband was smitten immediately too. It was just perfect.

We were told that Isabelle had a complete AV Canal defect too but it was repaired in Ukraine. I checked her chest on our second visit to make sure!

We brought Belle home in January of 2011. Everyone fell head over heels in love with the newest member of our family! We were so blessed! We saw the pediatric cardiologist and he was very impressed with her echo and said, “See you in 1 year.” WOW!

Belle is a beautiful 6-year-old attending 1^st grade. Belle loves when someone sings to her. She gives the best hugs in the world. Her 18-year-old brother, Conor, is her favorite person in the world!

It was always our intention to return to Ukraine for Lyla if she recovered. We checked on her often but the answer was always the same. “She is not expected to survive”. It was so painful! We finally accepted that Lyla would not be coming home. Our dream came to an end. It was awful to know the little girl we all loved fiercely was wasting away in a crib all alone and there wasn’t anything we could do.

Once we accepted Lyla was not coming home with us, we continued our journey and adopted a little boy with Down syndrome from the Ukraine.   We received a call weeks before traveling to meet Gavin. The call was the one I had prayed for! For 2 years I prayed to hear the words “Lyla is healthy enough to be adopted.”   I couldn’t believe it! It was a MIRACLE!

When the orphanage nanny brought Lyla in to us on August 1, 2012, I couldn’t believe it. I had never ever seen a child so ill in my life. I think I ran over and just ripped her out of that nanny’s arms. I held her so tight and just cried. Finally, I was holding her and with every ounce of my being showing her how loved she was with a hug. We were allowed to visit with her two times a day and she was changing with each visit. Thriving before our eyes! When we first met her she couldn’t even hold her head up but after nine days of visits she was able to hold her head up proud and strong for long periods of time! She was an absolute miracle!

Our flight home with Lyla was a rough one. Once over the ocean she was not able to breathe. She turned blue. I had never experienced a child turning blue. I had no idea that they actually turn purple. Purple nose, purple around her eyes, purple lips and mouth, etc…. I was so grateful I took the advice of many and had a retired EMT fly with us. He was so great! He let me know that she needed oxygen. The flight attendant, who was also a nurse (amazing), put her on oxygen immediately. They also talked to us about an emergency landing. I remained relatively calm, with the help of God, of course. I told the flight attendant that she looked much better on the oxygen and I believed she could make it home. Well, she sure did make it home. Lyla arrived HOME on September 15, 2012.

I brought Lyla to see the pediatric cardiologist (Dr. Leonard) on September 18^th. I didn’t expect to hear, “I’m not sure if we can repair her heart but we can always make sure she is comfortable with medications.” WHAT? Again, I had no experience with heart and lung issues. But what in the world was this guy telling me? He agreed to set her up for a cardiac cath and talk to the surgeon. Well, she had the cath in November of 2012. Dr. Leonard presented her case after Thanksgiving. The surgeon wanted Lyla to start taking Sildenafil and he wanted her on oxygen 24/7 and he would look at her case again in a few months. So it wasn’t a “No.” Thank GOD!! We were very satisfied.

Lyla was doing so well that the surgeon scheduled her for OHS in March of 2013. Lyla was admitted for OHS but the anesthesiologist was not comfortable with her chest x-ray and she cancelled the surgery. They scheduled Lyla again in May. The surgeon cancelled this time because her pulse ox was too low. He also told us that she would not survive surgery and they were not able to help her. I was mad! So mad! Lyla needed this surgery to survive. Dr. Leonard had told us he was concerned she wouldn’t survive the winter of 2013 if they couldn’t repair her heart. WHAT? Now she is going to die? It was crazy! She looked so good!  How could it be?

Thank GOD Dr. Leonard didn’t take “no” for an answer and he fought for her to be seen in Boston. He fought the insurance too! In true Lyla style – another MIRACLE!  Lyla was scheduled for a complete cardiac work up and OHS in October of 2013 at Boston Children’s Hospital. We went but her surgery was cancelled. Lyla was not well enough for surgery. She had pneumonia. But Dr. Marx did not give up on her. He scheduled her again for January of 2014. When we returned in January no one could believe she was the same child they had seen in October, she looked so much better. Her cath results improved too! So it was decided Lyla would finally have her life saving surgery January 16, 2014!   It was obviously just so meant to be that her repair would be done in Boston! I can’t even tell you how grateful we are to that amazing team at that most incredible life-saving hospital! She recovered in record time and was discharged on January 23, 2014! I am still in complete awe!

Lyla’s lungs are struggling still. They received blood from the heart the wrong way for three years, so it will take some time to get use to receiving blood the right way. She has been hospitalized three times since her surgery. One of three she was in the ICU, due to her oxygen being in the 30’s. But it hasn’t stopped her for a second. She is going strong. Living her life to the fullest!

The last two months she has improved significantly. She only requires her oxygen at sleep and for short periods of time during the day or with activity. She has had two colds and hasn’t required respiratory support that only the hospital can provide. Lyla just turned 5-years-old. She is attending kindergarten and loving every minute of it. She loves music and the she is positively the boss of our 12 family members. Lyla is obsessed with popsicles and the best part of her day is when her Daddy comes home from work.

Thank you for allowing me to share my heart warriors with you! I am not sure what we ever did to deserve these two blessings but I sure am forever grateful!

Please follow Lyla & Belle’s journey on their blog: http://luckytolovelyla.blogspot.com/?m=1
and on Facebook: Lucky to Love Lyla