FROM THE BEGINNING:
So we have had a few appointments and health updates recently. But before I blog about them, I think I will start from the beginning, giving a little more background about my girls.
January 22, 2005. Our second child was born. A beautiful girl. She entered this world right on her due date. The birth was pretty difficult. I had placenta abruptio. And my precious baby girl had a nuked cord wrapped around her tiny little neck 2 times. She lost a lot of oxygen and I lost a lot of blood. Once the doctor returned from another emergency which took her away from us for an hour, the doctor realized we had been an emergent situation as well. She took me back for an emergency c-section, and they hit an artery. So immediately after Sophea was delivered, I was rushed for another procedure to repair the artery. Everything was a pretty big blur for me until I received a blood transfusion several days later. When I was finally able to think and act normally, I held my sweet girl, for the first time I remember vividly. I examined every inch of my perfect baby, as mothers often do. I held her in the air to watch the cute “frog – like” reflex that newborns typically have. Her legs just dangled. So did her arms. Like cooked spaghetti noodles. When I laid her at the foot of my bed, I noticed she looked like the most relaxed little baby ever. Her arms and legs sprawled out to her sides. As cute and precious as she was, I instantly knew it was not typical. Something was off with my perfect little girl. I mentioned this to the pediatrician making rounds in the hospital that day. They assured me everything was fine, even though I knew in my heart of hearts it wasn’t fine. At her one week office check up, I mentioned it again. Her pediatrician assured me, just as the hospital doctor had, that everything was fine. And the pattern continued at her one month check up and her 2 month check up and her 3 month check up. We had a lot of check ups with her to check her weight gain. That was what they were concerned with. I forget why I couldn’t take her to the 4 month check up, but for whatever reason I couldn’t so her daddy took her. It was during this appointment the pediatrician that I’ve seen FOUR times before and insisted something wasn’t quite right, examined Sophea and told Mike that HE thinks something is wrong. The doctor tells him it could be Cerebral Palsy. Because of the traumatic birth, we, along with the neurologist that she was referred to shortly after her 4 month visit, consider that this is the root cause of her hypotonia/floppy baby syndrome. She also had torticollis so her head was always tilted to the left. We did an MRI and they find that she has periventricular leukomalacia (PVL), really it’s just a fancy way of saying that she has white matter on her brain and the probable cause was the lack of oxygen at birth. The neurologist suggests many, many tests throughout the next few years. We do a some genetic testing to see if she has all her chromosomes and nothing is duplicated or omitted. It comes back normal. We do a muscle ultrasound and muscle deformities are noted. The more invasive tests like, a muscle biopsy, nerve conduction, more thorough genetic testing, ect… we decide to hold off on since the outcome of these painful tests may give us a diagnosis but wouldn’t change her course of action and treatment plan. We wanted our lives to be as normal as possible and not have our sweet girl become a science experiment just so we could have the of the diagnosis. Especially, because the neurologist expected it to take years and years and many, many tests and still we may not find an answer. Currently, Sophea suffers from intermittent lazy eyes, severe seasonal allergies, severe kyphosis, scoliosis, and lordosis and hypotonia. And more recently shortness of breath and the inability to take a deep breath.
Several years later…
November 19, 2012. Our fourth child was born. Another beautiful girl. We evened up our family with 2 boys and 2 girls. Adylaede entered this world 10 days early. She tried to come too early but thankfully, the doctors were able to stop my contractions and gave me a steriod shot to help mature her lungs, in case she decided to try to come early again. Minutes after she was born and I was stapled shut, we were able to pass her around, love on her and examine our perfect girl for about an hour or so before the nurses and doctors took her to do her newborn blood tests and screenings. Her 3 older siblings were in the room with us waiting to meet their new baby sister, so after a couple hours, we call to see if they can bring her back into my room. They tell us they’re on the way and apologize, they are busy in the baby nursery today. An hour later we are all wondering what was taking so long, when we received a call from the NICU saying that on their way to bring her to us, Adylaede had a dusky spell and needed to go to the NICU to be checked out. She must stay for 3 hours. They call back right at the 3 hour mark to let us know that they had started wheeling her out to us when she had another oxygen desaturation, now she must be admitted to the NICU. In the NICU, we learn that she has hypotonia much like her big sister, and she continued to have these desaturations. For the first few days, she was having the dusky spells nearly every hour, but each day she had fewer and fewer. After about 10 days, her dusky spells were happening only 1 – 2 times a day and she could return to a blood oxygen level of 90% or better, without the use of oxygen, if I jostled her a little bit. She could not keep her oxygen levels up in the carseat, so she was sent home in a car bed. At the time, I didn’t realize what going home meant. It meant that I was going to have to watch her 24 hours a day, because if she turned blue, I needed to be able to pick her up, or wiggle her around, to remind her body to do what it’s supposed to. Adylaede was a sleepy baby. I know newborns sleep a lot, but she slept A LOT. And she sort of had a plastic-like look. She would nurse, but I would have to continuously wake her at feeding times and during feedings to be sure she would eat. She would sleep through diaper changes and clothing changes. Her total awake times throughout the day would be around 10-30 minutes in a 24 hour period. When most 3 month old babies are learning to roll over, my perfect girl was sleeping all day and all night. Even though Adylaede slept and slept and slept, I don’t think I slept hardly at all for the first 2 weeks we came home from the NICU. Seriously, 10 min here and 10 minutes there and that was mostly by accident. If she turned blue while, I was sleeping, who would be able to wiggle her to remind her to breath deeply?! I was an emotional mess (barely) functioning on adrenaline, fear, and Jesus! Finally, she had a pulmonologist appointment and they sent us home with a monitor that would monitor her heart rate, respirations, and her oxygen saturations. I could finally sleep! Of course when I wasn’t sleeping, I held her as much as possible!! I would just stare at her for hours and hours and never get bored! If I was holding her and needed to grab a drink from the kitchen or answer the door or any simple task, I’d either have to lay her in the bassinet or unplug the monitor and carry the machine with me, stuff I never would have considered before. With my previous babies, I was always multitasking with a baby in my arms, but I couldn’t do that so easily with Adylaede. She was plugged in. She was hooked up to the monitor for 5 months. Her desats, at that point, would only happen if she caught a cold. A simple cold would send us to the hospital PICU for 1 – 2 weeks for the next year and a half. While we watch Adylaede grow and meet delayed milestones much like Sophea did, we now must consider genetics to be the cause and not Sophea’s traumatic birth, like we thought for nearly 7 years. Currently, Adylaede suffers from hypotonia, severe seasonal allergies, and an occasional seizure episode.