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Tuesday, July 16, 2013

Our Story: The First NIne Months

After ten days in the NICU, Belalu had stabilized enough for us to finally go home. She had been put on Phenobarbital when they first realized she was having seizures, but still had two more after that, so they changed her to Keppra. That seemed to work. The Dr. wanted her to be seizure-free for three or four days before we could be released, so those additional seizures were devastating for more than one reason. Of course it was horrifying to see her turning blue and nerve wracking to hear the machines she was hooked up to suddenly go off in their shrill, heart-stopping tone; but it also meant that our countdown clock was re-started, and our family had to face more days apart while our day-to-day normality was put on hold for what seemed like an indefinite period of time.

It did indeed end, however, and we gladly left the hospital and the NICU to head home and start our "new normal." The medication made Belalu sleepy, so I was grateful that at least all that juggling of newborn and toddler was easier at first than I had anticipated. I should clarify that it was the first drug that really knocked her out- in the NICU she slept almost all the time, and even when awake, was pretty limp. I know newborns sleep a lot, but this was extreme. The nurses would try to wake her up for a feeding, and had a hard time of it. She would eat and immediately fall back asleep. Nevertheless, thankfully, we had no problems nursing and she never had to take supplements. It took some time to get the Pheno out of her system, and while the Keppra was better, she still was a pretty sleepy baby for the first three months. I was very concerned about how this medicine was affecting her brain development, but got little info from the Dr.'s, who assured me that it wouldn't. I have to admit I was not convinced. While in the NICU, we'd have these team meetings with all the Dr's studying our case, and when I had asked about the effects of the medicine on her development, the neurologist told me that it wouldn't have a negative impact. "Pheno is an imperfect drug, but it's the one we're most familiar with, so that's why we're using it." I asked him why it was imperfect- what were the side effects, and he didn't really give me an answer. Once we switched to Keppra, he told me that it was the Pheno that was making her so sleepy and limp. I still don't know why he didn't tell me that when I asked, and it made me distrust his explanations a bit. So, I continued to worry about her brain development in the subsequent months, especially since we had been told that there was a chance that the seizure-induced apnea that had caused her to turn blue could have affected her brain, too.

With E I was fairly laid-back about his development. I read up on the month-to-month milestones, and loved watching him reach them, but didn't worry if he was ever behind in some, because I knew he had his individual growth pattern and trusted that he would reach them eventually, which he did. With Belalu, though, we were constantly vigilant about her development, still not sure if the seizures were behind us or if they were indicative of something more serious that was still to be revealed. At two months, the neurologist determined that she could be weaned off Keppra. More anxiety as we waited to see if the seizures would return and relief when it appeared they wouldn't. At four months, we joyously kicked the infernal monitor out of our house for good. Its constant false alarms made us so indifferent to them that if any real emergency happened, I wondered if we'd even notice right away. I was convinced that Belalu was a normal, healthy little girl and the neonatal seizures were just some bizarre occurrence that would be left to marvel at when she graduated college and went on to do whatever amazing thing she was destined to do in the world.

Then, we watched a video of Essie at her age sitting in the bouncy chair, effortlessly reaching for the little velcro toy hanging down in front of him. And we realized that Belalu was unable to do it. At first I thought it was cognitive, but then J understood that it was physical. She couldn't reach out her arms at all. They were almost always bent at the elbows and tucked into her body. I immediately called the birth-to-three program to set up an evaluation. Since she was in the NICU she automatically qualified, but I hadn't believed it necessary at first. They confirmed that this was not normal and were concerned that she held her hands in fists all the time, too. We began to work on encouraging her to stretch out her arms to reach for things and to open her hands more.

By six months, she had made great progress, although her arms could not straighten out all the way. The PT thought that she was holding her arms in like that to help stabilize her balance to compensate for the low tone in her abdomen. At Belalu's well visit the pediatrician noted some concern that her growth seemed to have slowed down. She said that if it didn't pick up by the next appointment, we'd be referred to a specialist. I asked what it could indicate, and she said it could be a problem with her endocrine system. I didn't give it a lot of consideration, however, because I was convinced that everything was fine and in my ignorance, this didn't sound like it was related to the seizures or her arms.

Three more months went by, and all was well as far as I was concerned. And then we had the nine-month well check. I'll leave that one for it's own post.

1 comment:

  1. This must have been such a difficult time for you. I am literally just starting to relax abut the milestones now as Fi's speech seems to be so on track both articulation and sentence structure wise. I don't need to imagine how you must have felt during this time, I know it! And you still didn't have a diagnosis, so not knowing what was causing all this mus have been very worrying.
    I am sorry you are not coming to Spain this year. We will probably do Madison, some time in the spring, I need to look at school holidays so I can plan around them. I will let you know. HUGS!

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