Coming home with a newborn is a crazy time for any parent, but I don't think I was ever as worried as I was with V. After the destats she has at the hospital I felt the need to check on her much more often than I did with the older two. I quickly noticed that she slept so much more than my older two. Most of my friends thought this was awesome but really it made things so much harder. For one I literally couldn't keep her awake to finish a feed. I was able to breastfeed my older kids, but again with V things were different. Because she was so sleepy all the time and didn't stay awake for feeds and I had to get calories in her faster. If she didn't get enough she was more tired and it became a vicious cycle. At this point she was a few weeks old. Like most newborns she lost some weight after birth, however, she didn't start gaining it back for almost 2 months. Instead of feeding when she was ready and hungry I had to start waking her every 2 hours, even through the night. I also started pumping instead and was able to get her feeding better. This created a new problem, even with the slowest flow she was very prone to choking, seemingly out of no where. Looking back I feel at this point we should have had a swallow study done, but unfortunately our pediatrician at the time wasn't the best at suggesting what specialists we should see.
This brings me to my first major tip for anyone else going through this. Trust your gut. If you feel like something isn't quite right it likely isn't. Don't panic, but do pursue it. No one wants to say something is wrong with their child so if you're thinking maybe it is don't be afraid to get a second opinion.
By a few months old it was very clear something was different. V was very floppy even compared to other newborns. She also still slept for extremely long periods. She had little to no startle reflex and she never seemed to really focus on anything. The day that still sticks in my mind was when I decided to steam clean the carpet while she was napping. The cleaner I was using was very loud, I ran it under her swing and she didn't even stir. It really jolted me and made me wonder if she was deaf. I talked to our pediatrician. She did give us a diagnosis of hypotonia and Global Developmental Delay (GDD), which was a start but both of these are "symptom diagnosis" as I call them. They don't really give you a reason for anything. Around this time V was starting to miss milestones, I also pointed out her eyeballs seemed to shake. I was worried about seizures or something else going on. At this point our pediatrician, who I had really liked until this point, just began repeating, "I don't do special needs kids" pretty much any time I asked for a referral or tried to figure out what specialists to see. If this is the kind of answers you're getting switch doctors right away! I should have and i wasted months not following my gut on this one.
After much debated I got our pediatrician to order a hearing test with a specialist. Her hearing was perfect both in her actual ears and in her brain processing. I did find out that we should have been coming to the hearing doctor every 6 months since birth due to the number of days she was in the NICU. This had never been mentioned by the pediatrician.
I still knew in my gut something wasn't right. After doing tons of my own research I found out about a program called Early Intervention. This exists in every state in the US. It's free, but may run through your insurance first then they will pay the remainder depending on your state. You don't need a doctor referral you can call and self refer. They will come out and do an evaluation on your child and if any delays are noted (there are different levels of delay required by each state) you will be given access to free therapy and sometimes equipment. This therapy is done in your home so you don't even have to travel for it! I signed up for an evaluation and decided to push for an eye exam with a pediatric ophthalmologist as well to address the eye shaking.
For the first time I finally felt like I was taking steps towards finding out what was going on and how to "fix" it. I had no idea how long the journey would be at this point, or that 2 years later I would have some answers but also many, many more questions, but it really felt great to finally be doing something productive.
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