And so it goes…

As many already read, we went to the ENT a few weeks ago. Dr. Jan C. Groblewski was amazing. As I walked into the office of University Otolaryngology, Addie was already antsy from her long day being at the ophthalmologist earlier that same morning. After a 45 minute wait to get into the appointment we were 7 minutes early for, we were brought back to a small room. I was tired, hungry and ready for the day to be over! As Dr. G came into the room, I was shocked by his young face. I shook his out stretched hand, and we were off.

Dr. G looked at all of my information (I have a color-coded folder for each of Addie’s doctors), slowly scanning each page I offered up, making notes in his chart and asking some follow-up questions. We discussed her sleep study results, and her upcoming one, her infant hearing test and how she failed day one, but passed day two. Addie smiled, then winced, as he peered into her ears- the next day she ended up with an ear infection. As he leaned in to check her throat and feel her neck, I noticed his socks. Striped. Awesome. As a pediatric ENT, you can’t come to work in a clown suit, but you can wear silly striped socks- it actually brings some ease to the parents dealing with serious issues- like hearing loss in their infants. It was a small reprieve to the day’s outcome.

As Dave was away in London, I was lonely and had no one else to bounce each concern off of, so Dr. G listened to each thing that ran through my mind and helped me weigh my options for care. He gave me his suggestion and before trying to convince me, asked me what I thought about it. Tubes. I know they’re so common, but I wanted so badly for him to tell me that her hearing was suddenly great. No parent wants to see their baby put under, even if it’s for just a short while.

The second I was done talking, Dr. G looked at me and asked me if I had any other questions… of course I did. So he sat and listened again. Offering his medical and parental advice. We continued our discussion, speaking about the very small percentage of issues that arise with permanent eardrum perforation. I looked at him and said please don’t explain anymore to me. There is a 1 in 45,000 chance of a child being born with dwarfism. Dr. G smiled and said he had to tell me about risks, but not to focus on that. We also talked about tubes not giving us the results we want, and that if they don’t, we will fit her for hearing aides and we will monitor from there. After I had exhausted all of my questions and brain power, Dr. G told me that he is always more booked at the hospital, but because  of Addie’s achondroplasia, he would prefer to not have her surgery at the surgical center, and at Hasbro instead. He insisted I tell Dawn, the scheduling guru, that he had said to get me in ASAP. He handed me some papers, told me he would take good care of Addie and we were doing the best thing for her.

As I walked down the hall, missing Dawn on my right, I met up with a nurse who redirected me to her desk. I sat down with Addie, disheveled, hungry and nervous. “March…” My mind went blank. I can’t wait that long. Timidly, and so unlike me, I said, “The doctor said maybe we could get in before then…” I trailed off, hoping she wouldn’t think I was rude. Dawn smiled at me, picked up the receiver and spoke quickly to the scheduler at Hasbro. “Great. Thank you.” And she hung up. “February 21st,” she said to me, “How does that sound, Mom?” She explained the pre-op tour I could go on to talk to an anesthesiologist and learn about where we would be on the day-of. Dawn was reassuring and sincere. A wonderful experience, if you had to have one at a bad time, is how I would describe the ENT visit.

My mantra as we left: Mommy is here and will keep you safe. Just two tubes, and you will hear. I repeated this over and over as we drove home. I could not get a hold of Dave, and I was stressed. But, deep in me, I felt, and still feel, joy. I cannot wait until my baby girl can hear my voice better. Until she hears the music her daddy plays and the silly growls her puppy makes. I am excited for the outcome of the surgery… but I  wish there was another way. Because there isn’t, I know how blessed I am that my mother will be coming up to spend a few days with us to help me out on the day- she’s been through this with both of my brothers. Thanks, Mom!

* * *

And so, I went to our pre-op tour on Tuesday (to celebrate Dave’s birthday?) and took a tour of the waiting room, meeting room, recovery room and met with an anesthesiologist. Immediately, the doctor told me that he and his team were very familiar with working with children with dwarfism. I was miffed that I printed out information and he told me it was an article from decades ago. All I could think was no s*it, I can read the date, too, but I smiled and let him know achondroplastics haven’t changed their body-type and these issues are still a concern. I think he realized he’d poked the bear and at least looked in the direction I was pointing on the paper. After he asked for a family history of issues with anesthesia, he then laughed that he had to ask those questions because reactions are often a product of the individual and not passed down. I smiled, feeling more at ease.

As we shook hands, and the doctor left, I looked around… the room wasn’t very comforting, but Addie was intrigued:

There was no one to meet us and walk us out, so I took us on a brief tour of Hasbro (AKA got lost). The last time we were here, I came in though the ER and didn’t leave the room for 4 days. It’s a nice hospital, even if you can’t find your way out. We headed home from our trip… complete with paperwork to bring with  us the day-of and bellies rumbling with hunger. After a late lunch, I snuggled my baby girl to me and whispered in her ear. Things she probably didn’t hear, but that she will soon. I love you, my sweet baby girl. And I always will.