This past week has been a busy one. Not only did Miss Avalynn turn one month old (AHHHH), but we also had a doctor’s appointment almost every day this week. Babies with Down syndrome are at a higher risk for basically everything that can go wrong (or at least that’s how I feel about it when doctors talk to me). It’s overwhelming and quite scary to think about. But so far, Avalynn has been the picture of health (for this we praise God every day). However, all of our doctors are very wary of the fact that something could potentially develop, so we’re scheduled for follow-up after follow-up. That’s what the bulk of this week was.
On Monday, we went to a Pediatric Audiologist. Avalynn failed her newborn hearing screening in the hospital, so we had to have a follow-up to check if she was hearing normally. Now first of all, I would like to bring attention the fact that a rather large percentage (I say this vague statistic because I do not know the correct number, but it’s the truth) of newborns fail their initial hearing screening. That’s because they’ve been immersed in amniotic fluid for the past nine months and guess what…they’ve got fluid in their ears. So I really wasn’t worried about it when she failed the initial test. But as we sat at home day after day, I may have gotten just a little paranoid. I kept Googling “how to tell if your newborn can hear.” Ya know what Google kept telling me? “There’s really no way to tell if your newborn can hear.” How helpful. The only noticeable thing a newborn will do to let you know they can hear is startle at loud noises. So what did I do? Yelled “AHH” at my baby every once in a while. Now I’m not proud of it, but like I said, I was a bit paranoid. Luckily, my paranoia was all for nothing because she passed her follow-up hearing screening with flying colors. And of course now that I know she can hear me, I notice her startling at every little noise. That’s always how it works right?
On Tuesday, we visited a Pediatric Cardiologist. While we were in the hospital, they took Avalynn to get an echo (an ultrasound of her heart). This was because heart defects are very common in babies with Down syndrome. I was told afterwards by the nurses that there were four babies (including Avalynn) getting echos done at the same time. One other baby with Down syndrome and two typical babies. Avalynn had the best looking heart of them all (one proud mama right here). The only issue was that she had a PDA (Patent Ductus Arteriosus). Explanation: Before babies are born, their blood doesn’t need to go through the lungs to get oxygen. So there is a hole that allows the blood to skip the lungs called the ductus arteriosus. When the baby is born, the blood has to start getting oxygen from the lungs, so the hole closes. Sometimes that hole stays open, and the blood may skip the necessary step of circulating through the lungs. That open hole is called the patent ductus arteriosus. Now I definitely did not know all of this off the top of my head; this info came from The American Heart Association (heart.org). No accusations of plagiarism here. This follow-up appointment was to check that the PDA had closed, and it had. So now we have a fully healthy heart and no more cardiac follow-ups scheduled (YAY).
On Wednesday, we had an appointment with BabyNet (South Carolina’s early intervention agency). Early intervention is a bunch of services that help children (ages birth-3) with developmental delays. Every state in the U.S. has some type of early intervention since the services are provided under the Individuals with Disabilities Education Act. These services are either free or low cost to families with children who qualify. The way it works in SC, whatever our insurance doesn’t pay, BabyNet covers. It’s pretty great. Avalynn is automatically eligible for early intervention because she has been officially diagnosed with Down syndrome, so the meeting we had on Wednesday was just to explain how it would work and to gather all of our information. The next step in this process will be an early intervention specialist coming to our home to evaluate Avalynn for which specific services she will need. The specialist has five categories to look at: physical (vision, hearing, motor skills), cognitive (thinking, learning, problem solving), communication (using language and understanding it), social/emotional (playing, making friends, feeling safe), and adaptive (self-care and independence). The specialist will be looking for things like Avalynn holding her head up, paying attention to faces, cooing, and smiling. If she has a delay in any of these categories, we will be referred to specific therapists such as a speech pathologist, physical therapist, or occupational therapist. Most likely, we will be referred to all three since children with Down syndrome meet most milestones later than typical children.
For some reason, meeting milestones early used to seem important to me. Before we found out the diagnosis, I imagined my baby sitting up, crawling, and walking well before the average age. That dream was put to rest once we received the diagnosis. While initially it was a little hard to prepare myself for late milestones, now that she’s here, I’m actually just excited to be able to learn more about each area of therapy so I can help her reach these milestones. And guess what? We’re already reaching them. Another thing that happened this week: she rolled over. Well before the average age. I’ve now prepared myself to not expect these milestones until later, which makes it that much more exciting when it happens early. Now I will admit, she was on the couch when she rolled over. And even though our couch looks perfectly flat to me, I’m sure there’s a little bit of a slant that helped with her momentum. But who cares?! She totally did it.
She gets cuter and more fun every day, and I’m so excited to see her grow and keep reaching those milestones. Whenever they are met. They’re still just as important no matter when they’re achieved. I am her number one cheerleader and fan. Even though she has no idea what I’m saying, I will continue telling her how good she’s doing when she lifts her head up. I will continue to yell, “GO GO GO!” every time she tries to roll over. I will definitely continue to pester her all day long trying to get her to smile. These milestones will be met, these parents will be proud, and these blog posts will keep coming.