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.
Lyla turns 2!!!!
Mar 5, 2012 9:39pmHello friends and family! Unfortunately it has been way too long since I last updated. So much going on in our lives. I was diagnosed with severe depression and have been on a few different medications, trying to find the best one for me. My depression often leaves me unable to write and express my feelings. But I'm getting better and I'm ready to write about my beautiful daughter. Let's see where should I begin... For starters our Lyla is not a baby anymore! She is officially a toddler. She is the most perfectly terrible two year ever! Lol Her favorite word being 'NO'. But Lyla's not just saying words she talks full sentences! Along the lines of 'NO' we always hear: 'I don't like it', 'I don't want it', and 'Ewww'. Haha. She's such a brat but she is too cute doing it. You can't help but laugh. She's a little parrot repeating everything. But the best sentence she says is 'I wuv you momma'. Those few words make everything right. It is her that keeps me together when I feel liking I'm falling apart. She has a favorite movie and that's Monsters Inc. She can watch it all day every day. Thank goodness it's a cute movie. She loves to look through books like a big girl, coloring, play with blocks, play in her princess tent and most of all bubbles! She's active as can be. A speed crawler. She still receives physical therapy once a week and we are working on her standing. She wants to so bad. I know she'll get it soon. We also are working on taking steps while supported in a standing position. Everyday she gets stronger, and everyday she makes my doubts and worries disappear. I can guarantee mommy's little Smush WILL walk. She's too determined not to. We've recently bought her 1st potty! Potty training for us is different. She is still too young for me to know what she feels and what she can control. But I will tell you that I put her on the potty four times a day and she has been peeing and pooping!!! Yay! The toilet sings, mommy claps and Lyla smiles. She probably still doesn't get it yet, depending on how much feeling she has there, but nevertheless she's excited and feels like a big girl. Even though our Precious Lyla is the big 2, she's still tiny and petite, wearing 18 month old clothes. But her weight and height are proportionate and her doctors are very happy. Her head continues to stay in the right growth ranges and now she only needs to be seen every 6 months. Overall Lyla is very smart and advanced, she may have physical limitations but she pushes herself. For me, I couldn't ask for a more perfect child. Yes our life is still more work and yes we still have lots of check ups and yes we are just at the beginning of our journey, but it is our life. We have adjusted and it's perfectly normal for us. I really couldn't ask for anything more when it comes to my Smush. She's everything I could have ever wished for and more. She keeps me sane,... well relatively sane ;) she keeps me going, she keeps me happy and she keeps me alive with love. We hope all our friends and family are doing well. Well love you all! xoxoxo
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