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Lyla’s Story

This page is dedicated to my beautiful daughter Lyla Alyse Cespedes... Born February 17, 2010 with spina bifida, mild hydrocephalus, bilateral dislocated hips & clubbed feet. I hope to tell you all about our journey as a family.

In my daughters eyes, I am a hero, I am strong and wise and I know no fear. But the truth is plain to see, she was sent to rescue me. I see who I wanna be in my daughters eyes. This miracle God gave to me gives me strength when I am weak. I find reason to believe in my daughters eyes.

On October 7, I woke up a little earlier than usual, but I wasn't bothered because I knew I was going to have an ultrasound. I was about to see my little girl on the big screen :) For some reason I remember feeling a little bit more nervous than I had for any other sonogram before. But I shook it off and got ready. After signing in and waiting we were ready to see Lyla. As soon as they started I was relieved that I could see her heart beating and she was moving. She was blowing kisses at the screen! This ultrasound took a little longer than usual but I was perfectly content watching my baby play around. The technician got up and said she was gonna make sure the doctors had all the pictures they needed. So my mother and I were left in the room staring at Lyla's perfect little profile. After a few minutes she came in and said the doctor would be in shortly. My heart stopped. The doctor had never come in before. I was so sure that something was wrong with me, that I would have to be put on bed rest or something. But when he came in, nothing could prepare me for the news I was about to receive. Something was wrong with my baby. No sooner the words spina bifida came out, I got hot all over, and felt the room start spinning. I was gonna throw up. I had to excuse myself. When I came back into the room the doctor was still speaking to my mother about this condition. I knew exactly what it was. I had went to medical school and the only picture I had in my head was the one that was in my medical dictionary of a baby lying on her stomach with a huge opening in her back. He was saying she had the worst form that involved spinal cord and nerve endings. He mentioned that because of her condition she had some other associated problems. Hydrocephalus which is water on the brain and bi-lateral clubbed feet. He said she may have other disorders and that I should have an amniocentesis to be sure. He said her quality of life would be poor and I could chose to have a theraputic abortion. I was in shock. I told him I had to think about all this information. Then I had to do the hardest thing and call my husband to tell him that something was wrong with our precious baby. Thats the 1st time the tears came pouring down my face. I met with a genetics counselor to talk about the amniocentesis. I realized that a small chance of miscarriage accompany this procedure and for a split second I told myself that if she couldn't make it thru that, she wouldn't be able to make it thru all the surgeries she was bound to have. I researched all night and came across a support group. On there I saw beautiful children who regardless of there situation (leg braces, walkers, wheelchairs...) were so happy. My heart melted and it was then I made my decision not to have an amniocentesis, that regardless what my daughter came out with I was going to love her and give her all the support I could. I was not going to risk a miscarriage just to have more details. The rest of my pregnancy was a roller coaster of emotions. I had good days and bad days, mainly bad days because there was so much unknown. But because of the love and support of my husband, family and friends I made it thru that dark time. On February 17, my husband and some family accompained me to the hospital for the very long awaited arrival of Lyla. Everyone was quite, we wanted to be happy but we were so nervous. Finally at 9:25 am Lyla was delivered via c-section. The moment I heard her was the best feeling I had since they broke that heart breaking news to me months before. They wrapped her up so that her back was not exposed and let me kiss her forehead. Her father was able to follow her to the NICU and my parents were allowed to visit with her also. I could not see her because I was recovering for my surgery. While I waited in my room with my family and looked at all the pictures they took of her, we got the call saying they were taking her for her surgery. At 4 hours old Lyla had her back closed. I was finally able to see her that evening. She was beautiful! She layed there so peacefully recovering and healing. The next morning I was finally able to hold her. It was amazing, the moment I had been waiting for. Lyla is now 5 months old. She has had plenty of doctors appointments, she has had casting done to correct her feet, and receives physical therapy once a week. Because of the water on her brain there is a possibility she will need surgery to place a device called a shunt to help drain the excess fluid. She is monitered very closely for this and as of now has no need of surgery. We still don't know if Lyla will ever walk. But now it really doesn't matter to me. No parents wants their child in a wheelchair. But she is happy! Thats all I could ever want. She has taught me never to take for granted the simplest things in life, like walking and feeling the sand in my toes. I am honored to be her mother and look forward to this journey we will have together.

Latest Journal Update

Horse Riding Therapy

This Tuesday Lyla had her 1st day of riding therapy. Her horses name was Chester. She absolutely loved it. She will go once a week for 30 minutes. Makes me so happy that these opportunities are available to her. Can't wait to see the difference in her core strength!!! On another note I got some referrals for a pediatric GI doc. Being that Lyla is 4 now I'd love to get her started on some kind of cone enema routine so she can stay poop free for the day. I know she isn't in school but she is getting older and knows she a little different. So whatever I can do to make her feel like a big girl I'm all for it. Hope everyone is doing great :D