I am overdue for a post updating Becky’s progress. She continues with slow but steady growth.
It’s been an eventful few months for our baby wonder. We’ve added an additional therapy, weaned some medications, and are preparing for another surgery next week.
Overall Becky is doing remarkably well. We haven’t been in an emergency room since October as she has remained healthy and strong. She is still a tiny little thing, just under the 50th percentile on the growth chart for Down syndrome girls. She put on barely 5 pounds in 2021. I’m pretty sure I did that over the holidays. She just cut her first tooth, smiles and waves to everyone she meets, and babbles constantly.
Amazingly, it’s been exactly one year since Becky’s first open heart operation. Honestly, it feels like that was another lifetime. At our recent Thanksgiving dinner, none of us could remember the previous holiday season. Neither Sam, nor I, nor the kids could remember what we did for Thanksgiving, Christmas, or New Year’s Eve 2021. We were all caught up with Becky and time seemed to stand still in the long weeks between her birth and that first cardiac surgery.
When I look back at pictures and videos, I realize now how much she struggled in the weeks leading up to that operation. As we have gradually accepted Becky’s limitations, we are now more comfortable with her ongoing medical issues. We all laugh that we actually went to an emergency room when her G-tube first came out. I think everyone in the family, with the exception of Johnny (too young) and me (too grossed out), has popped that little sucker back into Becky’s stomach. I’ve literally spoken the following phrase while doing dishes: “I need everyone to clear their plates. And someone needs to take out the recycling. And could someone put Becky’s G-tube back into her stomach?”
Since Becky’s heart surgeries, the Cardiac and Heart Failure teams have managed her pulmonary hypertension with oxygen and medications. She went off oxygen in the summer and in recent months, we began a slow taper of her hypertension medications. I may have done a happy dance when I gave Becky the last dose of one particular medication. Every mom dreams of the day her baby girl stops taking Viagra (which was initially developed to combat pulmonary hypertension). She continues to take Lasix to reduce fluid in her body but that’s it.
Dr. Roberson is very pleased with her imaging and the surgical repairs are holding up beautifully. The pulmonary hypertension has resolved and the pressures in her heart are finally back to a normal range. He will continue to watch her mitral and tricuspid valves as her heart grows. We follow up with him again in March. It’s a huge relief that the cardiac piece is finally stabilized. Now when we go to the hospital for appointments, we enjoy hanging out with the Heart Fab team rather than being examined by them. Becky is popular at team lunches.
Now our weeks are filled with therapies rather than doctor’s appointments. We have a solid routine in place with a fabulous group of therapists. Monday is speech therapy for language with Vanessa. Tuesday is physical therapy with Laura. Wednesday is speech therapy for feeding with Ann. Every other Thursday is developmental therapy with Carrie. Friday is occupational therapy with Susan. Once a month we have music therapy with Elizabeth.
Feeding has continued to be a major issue for Becky. She still receives 75% of her feeds via the G-tube which was placed when she was 10 days old. During her July surgery, Dr. Sherman discovered a laryngeal cleft and injected a filler. Becky began to make significant strides in feeding therapy, taking thickened liquids via sippie cups and straws. But overtime, she began to reject drinking from a cup, eventually pushing away anything liquid, throwing it on the floor. Becky cannot talk but she does communicate. Ann, her speech therapist, suspected that the filler was wearing off.
Becky has had several additional swallow studies. Although she is making progress, this imaging reveals that she continues to micro aspirate. This keeps her vocal chords in a constant state of inflammation. If she catches a viral infection, she is more likely to struggle with croup. Thankfully, she has never developed an aspiration pneumonia which could cause problems for her heart. However, she has visited the ER twice and has been hospitalized for croup. These events add to the clinical picture, indicating that a surgical intervention is necessary.
Next Tuesday, January 25, Dr. Sherman will surgically repair the laryngeal cleft. While there is no guarantee it will absolutely fix her swallowing issues, Dr. Sherman hopes it will help. During the surgery, he will also draw a series of labs for Becky’s immunologist. Actually, I didn’t know she had one of those. Drawing blood from Becky is challenging, so Dr. Sherman will take advantage of the sedation. The team wants to check for any immunological issues and have some baseline testing as cancer is a significant risk in the future.
Due to Covid restrictions, I will be the only one allowed at the hospital. Hopefully, we will only be there for a couple of days. This surgery is more invasive than the last one and Becky is likely to be intubated afterwards. She will most likely require ICU care.
I will try to post updates next week during her surgery and hospital stay. I don’t feel quite as alone when I know people follow along with us. As always, I am grateful for your support and prayers.