I Am Blessed

(This long post may not hold interest for many of you, but it is something I have been thinking about quite a bit lately and I wanted to record it. Sometimes, with the busyness of life, I have to stop and take time to pay attention to how blessed I am.)

It was exactly 7 years ago today that I sat holding my 8 day old babe in my arms when I got a call from the pediatrician. This wasn't atypical as we had had to go in for daily blood tests because she was jaundiced and they usually called with her numbers. But this time, it was the doctor, not the nurse, and he asked me if I was sitting down. Of course, my stomach dropped and I sat down. We had our suspicions that things weren't quite as they should be. This baby was much smaller than the others, she didn't eat well and couldn't seem to stay awake. (More so than my typical newborns.) Her tongue seemed swollen, and she had yet to pass a newborn hearing test, but still nothing we could quite place. Anyway, the doctor went on to explain that she had tested positive for hypothyroidism. That she may not have a thyroid and that all the growing she did in utero was probably because she was drawing from my thyroid. (I am so thankful for the newborn screenings that they do.) At this point, they didn't know how much brain damage she might have because of it. They needed me to get back to the doctor's office as soon as I could. Of course, I started bawling. (As if I wasn't emotional enough having just had a baby.) No one wants to have a child with problems like that. I had already felt huge relief when she was born without downs syndrome which earlier blood tests during pregnancy had shown to be a possibility. And now, I started going through the possibility of having to change all of my expectations for this baby.

Shawn came home and we took her back to the doctor's office so they could confirm the results. For a newborn, the thyroid is responsible for growth and development in the brain as well as the body, so they were concerned about what hadn't had the chance to grow and develop as it should. They immediately put her on a very high dose of thyroid to give her little body a chance to catch up. We were sent to a pediatric endocrinologist who was (is) fabulous (another blessing) and helped us to better understand the problems associated with hypothyroidism. We left there feeling much better about the whole situation. Because of the high dose of thyroid, it took her several weeks to get back to her birth weight, but you could see a change as the thyroid started working. She was much more alert, eating better and looking healthier. We had to take her in for blood tests every few weeks at Primary Children's Hospital. It didn't take me many visits there before I realized just how blessed we were. This little baby could have so many other problems - much worse -and possibly not fixable. I truly feel grateful every time we go up there, still. And I am truly grateful every morning as I hand my daughter a pill to swallow, and know that that is such a minor thing to keep her healthy. (Granted, it used to be much more difficult when she was an infant and we had to crush the pill and dissolve it in water and try to get as much of it into her as possible - and she wasn't always cooperative about it.)

Along the way, she still never passed a hearing test. At 4 months it was decided to put tubes in her ears to clear fluid out and see if she could hear then. For whatever reason, she wasn't tested again after that. I kept worrying that she wasn't hearing like she should, but I think she heard enough that I kept talking myself out of it. Finally, at her 2 year appointment, as I expressed my concerns - again- because she wasn't talking at all, the doctor suggested that we test her again. And sure enough, the hearing loss that was present as a newborn was still there. Once again, I went through the possibilities of needing to adjust my expectations. I felt very sad about things that she might miss out on, but in the end I had a feeling of peace about it. (Something Shawn had all along, but I kept getting worked up about things.)

At the age of 2 we got hearing aids for her. (Not an easy thing to get a 2 year old to wear. It used to take both of us holding her down while one of us would put them in her ears, all while she kicked and screamed and cried. Oh, it was hard.) There was lots of sign language for a long time, lots of speech therapy and appointments with hearing specialists, and 2 different preschools at the same time. But I look now at where we are. Just a couple of weeks ago, the hearing specialist at the school called me to say that Amelia was testing well enough that she didn't need to see her anymore. (Wow. That was beyond my expectations.) She has minor accommodations at school. She sits near the teacher, who often uses a microphone, and if necessary gets oral tests at a slower pace, but in general she is thriving. Sure, there are some struggles, but there are with my other kids, too. Last week, she even started being able to put her hearing aids in all by herself. That was a huge accomplishment for both of us!
Every time she needs new earmolds, she gets to choose what they look like. We've had just pink, pink sparkly, clear with silver and purple glitter, and her latest model the pink, purple and white swirls which she gets compliments on all the time. I am so grateful that these problems have been relatively minor, and I'm grateful that if nothing else, they help me appreciate just how blessed I am.