Meet Lila

As we were at the hospital we met some amazing families. Some inspired hope, others made us grateful for our prognosis. Some families help us along our journey. I can only hope that our family did something to help another family in the hospital with us. 

One of the amazing little girls we met while at LPCH was Lila. This is her story:

When Lila Grace was born she looked and appeared to be a perfectly healthy little girl. And for the first 9 days of her life we thought she was. She saw a doctor the day she was born and again at 1 week old. 2 days after her 1 week check up I noticed her rapid breathing and her heart racing when I was holding her. I called the doctor and told him I wanted to bring Lila in so he could look at her. When we arrived at the docor's office he listened to her with the stethoscope and heart a murmur. He told me to get Lila to the hospital right away. The hospital did an echocardiogram and said they thought they knew what Lila had, but needed a heart cath to confirm her diagnosis. They told us her heart was not developed properly, but they would not tell us what they thought it was until they could confirm exactly what heart defect she had. However, the only cardiologist that did the caths was out of town for several days. So we sat and waited for 5 extremely long days worrying, scared, praying and lots and lots of crying. Finally, what seemed like forever, came the day her heart heart cath. Let me tell you how very difficult it was to hand over my precious newborn to undergo a heart cath. Somehow I was strong enough to do so. We sat in her hospital room and waited for the doctors to come tell us what they found. She had Tetralogy of Fallot with Pulmonary Atresia and MAPCAS and a VSD. All we heard was she would require multiple open heart surgeries to mend her broken heart. I asked "where is the best surgeon to do these surgeries"? At the time the head surgeon at our children's hospital in Tulsa, OK was still performing surgeries and every doctor told us he was "wonderful, amazing and known all around the world". He was a talented, successful surgeon. After reading and listening about him and being told by the cardiologists he was truly amazing we decided to let him do Lila's surgery. We were terrified to hear this heart breaking news about so many surgeries. Yet at the same time we were so thankful that surgery could correct her heart and give her the possibility to live a normal life. They also wanted to test her for DiGeorge syndrome. The results take a week or two to get back. Thankfully, she did not have that. We were able to take our baby home for 2 1/2 months before her 1st heart surgery. We met with the surgeon two days prior to surgery. He told us Lila would need several surgeries to correct everything wrong with her heart. We were scared and sad, but wanted to do what ever it took to save her life. The day Lila turned 3 months old we handed her over to the heart surgeon for her 1st heart surgery. The surgeon came in and said a beautiful prayer and said she was in God's hands that day. She was in surgery for approximately six hours and then they brought her to ICU. After she was in ICU for several minutes the surgeons came to tell us her stats were dropping and they didn't know why. The cardiologist that does the heart caths was off work that day so they had to call him in. He rushed to the hospital and did a heart cath on Lila and discovered what was wrong with her heart. After her heart cath she was rushed back into surgery for the 2nd time that day. Thankfully, the surgeon corrected the problem and many hours later brought Lila back to ICU so we could finally see her. I think it was around11:00 PM before we finally saw her. We spent the next three weeks in ICU for Lila to recover. Two months later we were back in ICU when Lila got RSV/pneumonia for another three weeks. After we got over that very scary episode of RSV which we thought twice was going to take her life we were able to bring her home. Multiple times over the winter she has viruses that landed us the in ER due to low oxygen and to make sure her heart was ok. I lost count, but I think we went to the ER and were admitted to the hospital at least 10 times over the winter.  As time approached for Lila's second surgery her 1st surgeon had retired. So, it was time we find a new heart surgeon. It was a blessing in disguise. Through Mended Little Hearts (a support group for heart families) I met other mothers with the same heart defect as Lila. They told me about Dr. Frank Hanley at Lucile Packard Children's hospital. He specialized in my daughter's defect. He actually invented and pioneered the surgery she needed to repair her heart. After my research I quickly learned he had the most experience in my daughter's heart defect. I'm upset I didn't know about him before, but you can't change the past. Dr. Hanley said he could repair everything wrong with her heart in ONE surgery. I was so excited. Not multiple surgeries like I had been told? Part of her heart defect is that she is missing her pulmonary valve and so she had a human valve put in during surgery. This valve will only last 3-4 years as it will become too small once her heart grows. So she will require additional open heart surgeries to replace that valve.  (Dr. Hanley, the man who saved Lila's life)  We quickly got Lila scheduled and she had her 2nd surgery at 13 months old. She now has a fully repaired heart and has been in CVICU for over a month. She is doing well, but not fully recover yet.  Lila's bed was across from Jake's in the CVICU. Within the first day after Jake's surgery Lila's family had reached out to us with support. I have never become so close to a family in so little time. Lila is such a sweet little girl, and she comes from such a loving family. She is so brave and strong. it seems what ever Is thrown at her little body she seems to overcome in time. Jen, Lila's mom, has given me so many resources. She helped us so much, even since we have been home. She has helped me realize how lucky we are. We have been blessed and we are so grateful we are home. I pray everyday for Lila. Her time in the hospital is not over, and her recovery time is not short. If anyone can overcome a broken Heart is is Lila and her family. We are so excited for the day we can see Lila running around with her mended Heart.  To our favorite Zipper Buddy!  Follow and Support Lila's Heart Journey on her Facebook page.  https://www.facebook.com/lilasheartjourney