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Pirate’s life for Harper Infant cataracts and feeding tube latest in daughter's medical journey

Big brother Landon thought Harper was a pirate after her eye surgery.

Big brother Landon thought Harper was a pirate after her eye surgery.

When Harper was a few days old, we began noticing a milky-white quality to her eyes. A trip to the vision center at Akron Children’s Hospital confirmed what I was scared to hear: Harper has cataracts, so big that she can only see light.

Dr. Nancy Hanna, our ophthalmologist, wanted to schedule 2 surgeries immediately to remove the cataracts in each eye so her brain wouldn’t learn that was how she was supposed to be seeing.

It was hard to hear that. I was still trying to prepare myself for the surgery for her heart in a few months and now she had to have 2 more surgeries.

Another mother reached out to me on Facebook. Her daughter had to have the same surgery. We ended up talking on the phone for a half hour. Hearing her tell me this surgery was easy was very nice. It helped calm my nerves.

Thrown a curve ball

While doing presurgery blood work, Harper’s potassium levels were high, then low and back up to high. She was sent to the ER. We were there for a long 7 hours.

The residents were worried about her fast breathing. After chest x-rays and other tests, it was determined that Harper was beginning to go into congestive heart failure. We were prescribed Lasix and sent home.

That night, Harper stopped eating from her bottle.

In the morning, we called her cardiologist, Dr. Bockoven. He wanted us to talk to our pediatrician first, but to start preparing ourselves for Harper to be admitted into the hospital.

When we returned to the ER for the second time in 24 hours, Harper was admitted and had to have a nasogastric intubation (NG tube) put in to help her eat.

This was rough. I hadn’t even thought that a hospital stay was even a possibility until her heart surgery. But I was surprised that I was okay with her feeding tube. I just wanted her to eat, and trusted the staff that this was the best way.

Everyone in the ER was great. They were cautious and I like how they took care of Harper’s issues. If they said she needed to be admitted and have a feeding tube, I knew it was for the best.

Harper just hours after her first eye surgery

Harper just hours after her first eye surgery

That weekend, Harper’s first eye surgery, scheduled on Monday, was up in the air. That made me nervous.Dr. Hanna had told us we needed to get it done ASAP.

On Sunday night, the on-call cardiologist gave Harper the all clear for surgery in the morning.

I felt fine during the surgery. I had been told it was an easy surgery and was glad to know she was in good hands.

While we were waiting, a father and son from our Down syndrome support group came and sat with us after they were done with their physical therapy appointment. That was helpful. It made things go by fast.

Surgery went well and the following day Harper was released to go home.

Her second eye surgery was a week later and this time was outpatient. Everything was a piece of cake. She had her first contact lens put in during her surgery. With these lenses, Harper will hopefully be able to see after giving her brain a few weeks to relearn.

Despite everything that has happened lately, Harper is doing just fine. Sometimes she eats her whole bottle and doesn’t need the tube. She is happy and chill. She is finding her voice and loves to coo and sing songs.

And my favorite part – she loves her mommy’s kisses.

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tonyacunningham@chmca.org' About Tonya Cunningham - Mom Blogger

Tonya Cunningham lives in Green, Ohio, with her husband, Aaron, and children, Kaitlyn, Landon and Harper. She is a first-grade teacher at Walker Elementary School in Canton. Tonya shares her experiences of overcoming the odds in her “Ups and Downs with Harper” blog, after receiving the surprise of a Down syndrome and heart defect diagnoses at birth.

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