From the moment I found out I was pregnant I have had something to worry about. I actually am really good at worrying about just about anything, so some of these fears may be over the top, but some definitely are not.
For those first several weeks, before the first OB appointment, I was constantly worried we'd get to the appointment and there'd be no baby or no heart beat. This has happened to so many. But it's a normal fear. And at our first appointment everything was just fine.
Yet when we went to our appointment to get the results of our 1st trimester screening, we got some shocking news. While our ultrasound results were normal, my blood work had come back as high risk for Trisomy 21. High risk for me meant that while I was only 32 at the time, the risk was as if I were 41. I was shocked. We decided to do the screening so that we would have time to mentally and emotionally prepare if this were our lot, but I honestly didn't expect for there to be anything wrong. My OB emphasized that this was just the risk and did not indicate any genetic defect. But to know for sure we needed another blood test. We did the blood test that day but had to wait 2 weeks for the results. Those were the two longest weeks of our lives. The 2 week mark also came the day we were flying to Louisville, KY to visit family. I was so worried we'd get the call while we were in the air and not have a detailed message and have trouble reaching the doctor again. Ugh - it was the most nerve-wrecking morning of my life!
We had 1 layover on our way to KY. Our first flight was a little late, but it was the same airline so we weren't too worried. Unfortunately, when we reached our connecting flight, they had already closed the doors. They would not let us on and couldn't tell us for sure which flight we would be able to get on. So we sat and waited, quite annoyed. But the funny thing is that while we were waiting, we got that call I was so anxious about. And it's a good thing, because we had really good news, and I was able to breath better the rest of the trip. Our doctor called to let us know that my blood work showed a 1 in 1 trillion chance of our child having trisomy 21. Ok, maybe not 1 trillion, but it was a lot! I was prepared to take on the challenges of a child with a genetic defect. If it was what the Lord had for me, I knew He would give me what I needed. But at the same time, it shattered the dreams that I had for my child. I felt guilty for being relieved, but honestly, I am still very relieved.
Our next health issue came at birth, though we didn't know much right away. Jack's left ear is quite a bit smaller and a different shape from his right ear. If you see it on it's own you might not think much of it, but if you compare the two there is an obvious difference. While we were still in the delivery room the nurse mentioned it, but she thought it had been folded over in the birth canal and would work itself out in a few days. But after a few weeks we realized this wasn't a folded ear - it was definitely different. We had an appointment with the ENT and the results of the audiology test were that Jack has hearing loss in his left hear. Unfortunately, the test done that day was not specific enough to tell us the extent of the hearing loss or what was causing it. So we had another appointment a few months later at Dell Children's. I was dreading this day for so long. Jack had to fast ALL morning long and then be sedated. I was prepared for lots of screaming, but he really was such a trooper. Other than being a bit cranky (who wouldn't be if you denied them their 2nd & 3rd meal of the day!) he only cried when the doctor or nurse took him. And because of the sedation, he slept ALL afternoon!
The results of this test were relatively positive. Jack's hearing loss is just barely below the line that indicates normal hearing. And the loss is caused by a structural issue, which means he can receive sound just find, but something is blocking it. We're hoping this is something that opens up as he continues to grow and develop.
Our most recent appointment with the ENT was still a bit inconclusive. There are two possibilities. One - the canal in Jack's left ear is a bit smaller, and this could be blocking the sound. Two, there could be something going on with those 3 tiny bones in the middle ear, but this is something the ENT can't see just by looking in. We'd have to do a more invasive exam for that and he doesn't think that's necessary at this point. What we do know is that Jack does have hearing loss in his left ear. And though it's minimal, early intervention is best. We're still doing our research, but it's likely he'll get to wear one of these cool headbands for a few years. At first I did NOT want Jack to have to wear one of these. Although he's still so young and won't be teased yet, I just didn't want the stares from others. And the hearing loss is so minimal, I wondered if it was really necessary. But after reading up on it, I have realized a few important things. One, an obvious hearing devise let's others know that Jack has a hearing loss, so they can help - by speaking louder, making sure they are visible when speaking to him, etc. Also, since early intervention is best, getting this device now allows Jack to get used to hearing well before entering school and being at an age where he may be more likely to resist the device and the new sounds. The most important thing that I hadn't thought of is simply this - though Jack's hearing loss is minimal, we don't know what exactly he is missing. And I for sure would hate for him to be missing the important things that will help him with language and social development in these critical early years of life!
Another health scare we have had is finding out at our 6 month appointment that Jack hadn't grown since his 4 month appointment. We knew he was a little guy and weren't expecting huge gains, but ZERO growth freaked me out quite a bit. The growth plan was to go to 2 solid meals a day and supplement with formula. Well, that evening Jack got sick and started vomiting for almost 24 hours. He lost his appetite for almost everything. Even when he did get his appetite back, it took several days before he would take a bottle again and almost 2 months before he would eat solids again. And, since breastfeeding is supply and demand, my supply had dropped dramatically during those days when he wasn't eating well. When he finally started taking a bottle again, we were pretty much feeding him only formula, with one nursing session a day. That bit of my supply finally dropped as well and we are now at only formula - certainly not what I had planned! In the end, this hasn't been the disaster it felt like in the midst of it. We had a weight check at 7.5 month and, to our relief, Jack gained 3 pounds in that 6 weeks (after he got over his stomach bug) and was back on track for his regular growth. At an ear appointment 1 month later he had gained another pound!
Jack is 15 months now, so this feels like quite a bit of health trauma in his short life. I am super thankful he will likely not remember any of it as he grows older. I am of course hoping this is the last of it, yet I also know we will likely deal with his hearing loss for the rest of his life. Thankfully he is a super happy baby and has been such a trooper through it all!
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