I previously posted about Becky’s graduation from the Heart Fab Team. Now that her heart is repaired, the focus has shifted to other medical issues and therapeutic needs. An ongoing concern has been Becky’s hearing and swallowing.

Becky will undergo surgery #4 tomorrow to address problems with both.

The past several months have been a flurry of activity and appointments. Becky has weekly physical therapy and bi-monthly developmental therapy. Her gains are incremental and slow. But she’s so pleasant and thoroughly enjoys every session. We are grateful that these therapies take place at our home eliminating the long drive to the hospital. Her therapists are quickly becoming like family.

She also sports a fabulous new pair of exercise shorts. These hip helpers help prevent over-rotation in her hip joints. Becky isn’t exactly thrilled to shimmy into these gems. It’s a bit like stuffing a sausage. Or what I imagine that is like. Laura, her physical therapist, recently completed an Iron Man in Idaho during the brutal heat wave. The woman is an absolute rock and incredible inspiration. During the race, she thought of Becky every time she saw someone in red spandex.

Becky has also been seen at both a Down Syndrome Clinic and a Cardiac Neurodevelopmental Clinic. These comprehensive visits evaluate her medically as well as developmentally. Honestly, Becky loves these play-based clinics where she is the star. It’s always a treat to reconnect with therapists that first worked with her in the NICU. We’ve also had multiple pediatric, heart failure, and ENT appointments. It’s been a full-time job keeping up with her care.

Back in April, Becky failed a hearing test in her right ear. Although she passed her newborn screening, a child can lose their hearing at any point in time. I was heartbroken to think that something else was potentially wrong with her. During a quiet moment in an exam room, I had a little talk with Becky about this. I told her that it isn’t necessary to check-off every box on the list of Down syndrome complications.

Honestly, the thought of raising a child with hearing loss was particularly difficult. And I found myself in tears as I texted the kids in the family group chat. But tears turned into laughter when Greta reminded me of our prior experience with right ear hearing loss. It’s a classic family story which features a Kindergarten Michael, the extraordinary Mrs. Ruskin, and the greatest Parent-Teacher Conference of all time. I promise I will tell you the story at some point.

We were advised to wait a few months for another hearing test. Sometimes fluid gathers in the middle ear and children with Down syndrome are particularly susceptible to this. This fluid can come and go over time. However, when the follow-up test was done at the end of June, Becky failed in both ears and there was no discernable movement of either ear drum. It is time to intervene, hence the surgery tomorrow. We know that Becky can hear and responds to sound. But with such significant deposits of fluid in the middle ear, it’s like she is constantly wearing ear plugs. This might be contributing to her lower development in cognition and language processing.

While she is in the operating room, Dr. Sherman will also look into her swallowing issues. We’ve worked weekly with a speech therapist at the hospital to prepare for a second swallow study. The last one was done when she was 9-days old. At that time, her malrotation was discovered. She had her first surgery to correct that problem and a G-tube was placed to facilitate feedings. Her G-tube has been the greatest blessing. I can’t imagine how she otherwise would have gained enough weight for the open heart surgeries.

Unfortunately, this swallow study didn’t go as we had hoped. She is still micro-aspirating liquids into her lungs. There is an ongoing concern that she could develop an aspiration pneumonia which would be problematic given her congenital heart condition. So we continue G-tube feedings and very limited samples of purees and thickened liquids for practice. Obviously we want to work towards feeding Becky normally. Because her first birthday is just on the horizon, and the girl needs cake.

There are three procedures scheduled for tomorrow:

1. The fluid in her middle ear will be drained and ear tubes placed to prevent future accumulation.
2. The surgeon will do a bronchoscopy to determine if there are any anatomical findings contributing to her issues with aspiration. The speech therapist explained that there is sometimes a small hole where the trachea and esophagus meet. If a hole or cleft is found, Dr. Sherman will inject a filler which will expand the space and provide several months of extra protection for the airway.
3. She will also have an auditory brain stem response test. Done under anesthesia, this will help Dr. Sherman determine the state of her hearing and whether hearing aids will be fitted. We don’t know if Becky’s failed audiology tests are the result of fluid or permanent hearing loss. We should have some better answers tomorrow.

On the spectrum of surgeries, this is definitely towards the opposite end of the open heart procedures. Still, she will be under a general anesthetic and will need the specialized care of a cardiac anesthesiologist. While these are normally day procedures, Becky will be admitted to the hospital overnight to ensure her heart and lungs tolerate everything.

I hope to post tomorrow throughout the day. Her surgery is scheduled for 11:00am at the place we know all too well. We are fully confident in Dr. Sherman and the exceptional team at Christ. As always, I am grateful for your prayers and support!