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.
Big hugs to you! Dr G is the BEST and I know your sweet Adelaide will be hearing perfectly in no time. They will take great care of both of you! xo
Thank you, Joanna! I love hearing from other people who know his work- it’s not easy being Mom!
High hopes that everything is going to go perfectly smooth and she’ll be hearing you and your husband sing her songs and say “I love you” over and over and over again! xo
Thank you! I hope she knows how much we love her, already, but I cannot wait to have her truly hear it!
I know the first time of kids getting tubes ins daunting. Between my 3 we are approaching set 5, the fasting is the worst of it really. Fi just got her second set and I haven’t finished my coffee in the cafeteria by the time I got the call to meet her in recovery. You should see very soon how much more she will babble. It is very worth it. I hate it when they call me “Mum” in hospitals or schools..
That’s a lot of tubes! My brothers had multiple replacements, each 🙁 And what is the deal with that? I LOVE being Addie’s mom, but Mrs. Martinka, Chelley, Michelle… anything. I still have a name 🙂
Yes, I would think Mrs Martinka would be quite appropriate ;-)….
I am sure you know this.. kids with HCH/ACH probably need to have tubes in place until they turn around 8 or so… So that’s quite a few sets. I know in the US they are in love with T-tubes, because they last longer, but the risk of perforation is significantly higher, but anyway they wouldn’t do them for someone Addie’s age. In Europe they love to push for hearing aids instead of multiple surgeries, and then once the middle ear dysfunction resolves with age, they wouldn’t need the hearing aids anymore. We thought about it long and hard and decided that Fi already had a lot going on with having short stature and glasses, so decided against the hearing aid…
Evan got tubes put in. It was scary and he cried for like 3 hours after he work up. It was hard to see him so upset, but he didn’t get another ear infection after that. Good luck!
Addie only got one infection, so I hope she will never have another. I truly just want her to be able to hear all the wonderful sounds around her!
Looks like you and she are in good hands! Good luck!
Thank you!
Just think how much she’ll clap when she can hear better! Best of luck to both of you.
Thank you, Heather! I love her little hands clapping- the noise is so small for the mighty swing of her arms. It’s the sweetest- I hope she will clap all the time once she hears it!
I’ll be thinking of you both and sending lots of positive thoughts your way. I can’t wait to read more about the outcome. I’m sure it will be amazing!
Thank you, Candice!
Wishing Miss Addie all the best with her surgery. Thinking if you guys 🙂
Thank you, Jessica!
She’s going to do so well, Chelley! It will be great for her to be able to hear more clearly… but you really couldn’t have a cuter, more smiley, joyful kid!
She will be excellent… especially with all the love she has surrounding her. Thank you! 🙂
Such hugs to you! I told you before but your strength is amazing and because of this A is going to be great! Thinking of you constantly!
Thank you, Melissa! I may seem strong, but it’s just Addie giving me all her super powers 🙂
You are such an amazing advocate for your daughter. Many parents would just blindly go along with what doctors tell them. The fact that you are making yourself so knowledgeable will be an asset to her. I hope she recovers quickly and her hearing improves.
Thank you so much… I feel like if I don’t know what’s best for Addie, no one does. I know it sounds silly (I’m no doctor), but I NEED to know or else I imagine the worst.
She will soon hear all the sounds of the world- and I cannot wait!
Sending positive thoughts and hugs! She’ll do great!
Thank you!
When you took the tour at Hasbro, did someone hang out with you and give stuff to Addie? When my kids had to go for their endoscopies last year, we went in for a tour for them. We were in the room with the train set before the tour. They got coloring books, Sydney made a doll of her own with a gown and bandages, and the kids got to play hands on with some of the equipment and smell the different masks that they could choose on their day. They both had a good time, like it was an adventure. I was a jumble of nerves but it definitely helped them feel familiar on the day.
Although I don’t wish anyone to ever have to go through health and life challenges with their children, your story and continued honesty and strong spirit will help others faces such challenges. Great luck and prayers with the surgery.