As of today, we are on the full-time schedule for Andie wearing her helmet. We got Andie’s helmet on the 6th and while I was really anxious about it, most of the anxiety dissipated when I saw her wearing it for the first time in the Orthotist’s office. I was pretty worried that she would be upset about it even though the Orthotist had assured us several times that the babies who get these cranial remolding helmets simply don’t mind! He was totally right. He put it on her and she didn’t cry or fight it at all! Yay! We talked about how to clean it, the wearing schedule, etc. and were given a handout of information as well. Andie’s next appointment will be on Wednesday to see how it’s going and to address any issues but as of now, I don’t think we have any to address! The only thing is that her poor little head is crazy sweaty after wearing that thing but that is normal in the beginning. Once her body gets used to wearing the helmet, she won’t sweat so much anymore. The wearing schedule for the past 4 days looked like this:
Day 1: On for 1 hour / Off for 1 hour / off for naps and nighttime sleeping
Day 2: On for 2 hours / Off for 1 hour / off for naps and nighttime sleeping
Day 3: On for 4 hours / Off for 1 hour / on for naps and nighttime sleeping
Day 4: On for 7 hours / off for 1 hour (3 times a day) / on for naps and nighttime sleeping
Last night was Andie’s first night sleeping with the helmet and it actually went pretty well! I don’t know how or why, but last night’s sleep was actually better than the past couple of weeks. She woke up 3 times within the first 2 hours of me laying her down but I was able to just shush her back to sleep. Then she woke up around 1 or 2 and cried for 2 or 3 minutes and then fell back asleep–that was a first! At around 6 she woke up, I fed her, and then kept her in bed with me and she slept until 8. Awesome!! I think we are going to try putting her in her crib tonight for the first time so wish us luck! AHH!
For those who don’t know why Andie is wearing a cranial remolding helmet here’s the rundown: Andie was diagnosed with acid reflux during her second week of life. She was absolutely miserable and it took a while to get things corrected in order to help relieve her reflux. I had to drastically change my diet, at first we used medication (stopped after about 2 weeks) and instead supplemented with formula to combat spit up (Enfamil AR) until we felt she was doing well enough that we could discontinue that. We finally got things under control by me just sticking to a very controlled diet. All that time, when Andie was feeling the burning from her reflux, she was constantly lifting and turning her head to the left to try and alleviate the pain (very common and the only way babies know to try and help themselves). This eventually caused her to have Torticollis. Torticollis is the tightening of a certain muscle that runs the length of the neck starting from behind the ear. The tightening of the muscle caused Andie to favor looking/tilting her head to the left side. She could turn and look to the right but she had limited mobility compared to when she would look to the left. At her 4 month well check we were referred for physical therapy and after 2 weeks we started.
At her first appointment, the physical therapist pointed out some abnormalities in Andie’s head shape that she felt were caused by her Torticollis and thought they were significant enough to refer us to an Orthotist to see about a helmet. Because Andie was favoring that left side, it created a flat spot on the back left of her head and caused the front left of her head to bulge out further than the front right. She also had some bulging out on the back right of her head as well thus causing an asymmetry in her head shape which is medically defined as deformational plagiocephaly. The Orthotist we saw confirmed that but thankfully we learned that her plagiocephaly was not as severe as we thought. A severe case usually means at least a 10 mm difference and Andie was at a 6 or 7. After her initial head scan we agreed it would be best to wait another month to see if there was any improvement and we had high hopes. We went back for her second scan the day she turned 5 months old and unfortunately, there was very little improvement–not enough to warrant us waiting another month for further improvement. At that appointment we decided it would be best to go ahead and have the helmet ordered and go through with the cranial remolding treatment.
Daniel and I were definitely bummed about it but knew it would be the best possible thing for Andie and so of course we were going to do whatever would be best for her! The typical length of treatment is anywhere from 3 – 6 months. We’re leaning more towards the optimistic camp that she won’t have to wear it very long only because her plagiocephaly is not that severe. For the most part, our Orthotist told us that babies will wear these helmets until they are 11 – 12 months old, however, the last 2 or sometimes 3 months are exclusively for maintenance and the child only wears the helmet at night and not during the day. We’ll see how things go! Andie’s helmet is a solid light pink and we’re going to be ordering some special vinyl decals to put on there soon 🙂
Lastly, I’ll just say how proud I am of my little baby. I’m so impressed with her being able to quickly adapt to this and we’re right behind her! This is obviously one of those things that is a little harder on us than it is for her but it makes it so much easier to see that she is still her smiley self! Babies are so resilient and for that I am grateful!