This is Layla's Story. When our sweet girl was born, she had issues latching to either bottle or breast. The hospital told us it wasn't uncommon for a newborn to not be hungry right away. We went home like normal. I had to wake her up to eat, and normally had to open her mouth for her. After a week or so, she would open it on her own. At Layla's two week check up, she hadn't gained weight. Her doc told me if she didn't gain weight within the next week, she would be hospitalized to find out why. Looking back, it seems obvious that it was taking too much energy for her to eat, but I didn't realize it at the time.
The day before her weight check, Layla had an appointment at the WIC clinic, and she was still six pounds even. My heart dropped. The next day, I prayed for God to bless the scale results. She weighed six pounds and thirteen ounces. We went home, happy and certain that our weight worries were over.
Fast forward six months. Layla liked to sit in her bouncer more than anything, didn't like tummy time, and couldn't roll over yet. She also wasn't reaching for or playing with toys. Adrian, our youngest boy, was seeing a behavior therapist to help him grow out of his shell and be ready for school. One day, his therapist picked Layla up and declared to me, "This baby has low muscle tone." You know what I pictured? A baby lifting weights. Funny, right? We went to see her pediatrician for Layla's six month check up, and I wanted to get a referral to Early Childhood Intervention. Her doctor agreed to set us up with them. He told us then that her head size hadn't grown since her four month check up. He asked us to come back in a couple of weeks (looking back, would two weeks make a difference?) We prayed, and we prayed hard. We didn't want anything to be wrong with our little girl. Everyone we knew prayed. Two weeks later, her doctor said her head had grown a little (I think it was a quarter inch). So again, we went home, sure we were going to continue on as normal.
Layla was enrolled in ECI services, and it was agreed that she would start working with an occupational therapist to start building her muscle tone. Some of her first exercises were to stretch her index finger and thumb so the muscle would stretch because it was so tight. It's funny as her mother to look back, because now Layla will lay in bed and touch her thumb to her index finger over and over.
A week later, we received a phone call from the genetic clinic at children's Dallas. I was upset with Layla's pediatrician for not letting us know he was sending a referral out, but I'm glad he was proactive (which we have had issues with him being since then). Layla's appointment, which was in June of 2014, went well. Her doctor thought there may be a few things he could test for, and he ordered an MRI to be done. He confirmed her pediatrician's diagnosis of microcephaly, small head size. Of course, I read up on the tests he was running, and proceeded to lose my head until my husband calmed me down, and reminded me that God was in control.
We had Layla's MRI done a couple of weeks later. It felt like a nightmare when she woke up from the anesthesia and wouldn't stop crying and didn't want her daddy or me. Layla's always been one to calm easily with her song or us holding her close. Before her MRI came back, we got the results of blood work. No Down Syndrome, no Prader Willi, and she was processing her cholesterol well. I thought things were on an upswing.
It was a Saturday night when I found out there was indeed some thing different about my little girl. I got a message on my phone with MRI results: Underdeveloped corpus callosum with marked global delay. "Essentially no normally myelinated white matter." Hypoplastic brain stem. What did all this mean? I had no idea. I sent the results to a friend of mine with nursing experience, started breaking things down with google, and eventually pieced it together. The white matter is what makes up the corpus callosum, which is in the middle of the brain and helps the right and left side communicate. No one still has really explained the brain stem issue, but basically it's small but not too small. I think it may have to do with her microcephaly.
I found JourneyFEST then, at the time known as Hope's Seed. A friend was in the group, and knew where to direct me for support. There they were, a group of moms who had been down the exact road I had, and plenty of others that had it rougher and bumpier than us. I am not a social butterfly, so mostly I follow along, give advice where I can, and seek help when I feel like there's no answer. I've made a close friend, and our families get a long great, and the dads like to give us some time to breathe, which is important.
In May 2015, Layla's GI doctor, who she had started seeing for constipation issues, noticed she was having issues with gaining weight, and talked about placing a G Tube. He said for us to wait it out over the summer and we would talk again in July. At home, I started Layla on Pediasure, and she started having speech therapy (focusing on eating) twice a week. Eating has always been an issue for her. Once we started on baby food, it took an unusually long time for her to eat, and she was even worse with table food.
In August, her GI said Layla had gained enough weight that he wasn't concerned. I wasn't so sure, because he hadn't seen the lengths we had gone to for her to gain that weight, but I said okay. My concern was that the winter would be a battle again. When she is the least bit congested, she refuses food, which lead to some of her weight issues. A week later, at her two year check up, her pediatrician told me to reconsider the gtube decision, and showed me Layla's growth chart, and told me he was worried about constitutional growth delay. In that moment, I felt God's peace in my heart. I had been praying over the situation so much- and here was my answer. I had to meet with the GI and lay out my reasons for wanting the procedure done. He was hesitant, saying it was more complicated than it seemed, but I knew she could handle it.
Two weeks later, Layla had her tube placed. A week and a half later, we were approved for a nurse to come and help me out five days a week. It took a couple of tries to find the right one, but I think that is just part of the process. Within a few weeks, Layla had gained a pound, and then two, and then three. Also in August, her neurologist ordered a second MRI to be done. We weren't sure why Layla was hitting herself in the head, and we wanted to be sure there was no pressure in her brain. There was no pressure, thank God. But everything else was the same. Even though we had set a prayer chain at 9:00 the night before her test, it was still the same. I had hoped for one of God's great miracles, to see her corpus callosum normal and her white matter progressing. I threw my phone across my bedroom, I was so distressed. But then I realized, things weren't worse. The same, yes, but not worse. And for that, her dad and I rejoiced.
Layla is 2 now, due to be 3 in September. She is 25 pounds and 32 1/2 inches long. She has occupational, physical, and speech therapy, along with vision services and specialized skill training (kind of like behavioral). She's thriving, and she's so happy. She hasn't talked in our way yet, but she sure lets you know when something is on her mind. She has a smile that could light up the darkest room, and her laugh would lift any heavy heart.
I don't feel sad for her so much anymore. Her therapies, watching her brothers run around, mommy and daddy carrying her everywhere, trips to Dallas- this is what she knows, this is her normal. Even the wheelchair she will get will be normal to her. She really gets excited when I'm hooking her extension into her belly. She knows it's time to eat. She loves to watch certain parts of Frozen. She recognizes her loved ones, even on video. She recognizes four places in particular- Wal-Mart, church, her grandpa's diesel truck, and her bedroom. She definitely has her own opinion. We are working with speech therapy to start teaching her to communicate with pictures. She will stand supported, without the stander- that just started happening in the last two weeks.
I thought our family was complete with our boys, but then this beautiful princess landed in my lap. Her middle name is Faith, and we had no idea yet what road she would go down when we gave it to her. Layla Faith is a precious girl.
by Sarah Hunter, Layla's mom
Layla Faith's Story
JourneyFEST @ 2013