Harper was first released from the hospital after 54 days on her 4-month birthday July 3. It was incredible, and quite an adjustment, to have our baby finally home with us. She came home with oxygen and a gastrostomy-jejunostomy tube (G-J tube), which feeds her directly into her intestines, 20 hours a day.
Learning how to get around with all this medical equipment wasn’t easy. The first time we left the house, we ended up being an hour and a half late. But despite everything, we enjoyed the holiday weekend with the family, Baby Harper and all.
We found ourselves back in the hospital on July 6, only 3 days later. Being a post-op heart baby, any fever, even what most would consider a low-grade fever, is a reason for caution.
This hospital stay began the dance of being in and out of the hospital. Since the initial discharge on July 3, our longest stay has been 4 days, and the longest period in between stays is 3 weeks.
Harper’s medical updates
One thing we’ve learned is that if doctors say there is a slight chance something might happen, it will happen with Harper. We see more specialists at Akron Children’s Hospital than I ever thought possible.
Here is an update with everything going on:
Harper will need a second open heart surgery relatively soon. Her mitral valve is leaking and there is a blockage in her left ventricle that is slowly getting worse.
Dr. Bockoven is going to do an echocardiogram at her next appointment and if it appears to still be getting worse, he will present her to the surgical team.
After 4 eye surgeries, Harper hates having her eyes touched. Our appointments with Dr. Hanna are always a battle for a simple examination. Harper won’t have any of that.
I have really grown to love Dr. Hanna. She is very upfront about everything, which I like. We don’t know how well Harper can see now, but we are finding hope every day. Harper is able to track things and mimick us by smiling or by sticking out her tongue.
Harper is also quite the mystery in GI. Her G-J tube is for reflux, and despite the fact that nothing is in her stomach, she gags every time she has a bowel movement.
Harper is also going to make a visit to Dr. Toder in Pulmonology. She’s had so many respiratory infections, which don’t combine well with pulmonary hypertension, and we want to make sure all of our bases are covered.
I went back to school in August and it has been a learning process. I was able to find a day care near my school that specializes in kids with special needs.
It’s great knowing she’s in good hands. It made it easier for me to return to work.
But like with all kids in day care, Harper kept getting sick, which resulted in many hospitalizations. I spoke to her pediatrician, Dr. Snyder, about my concerns and she agreed day care isn’t the place for Harper right now while she is so medically fragile.
Thankfully, our insurance agreed. We now have a nurse for Harper Monday through Friday, on top of the nurse we have at night – which is wonderful because Aaron and I are able to sleep.
Harper is well-known at the Green ACHP office, having frequented the office and the walk-in hours in the evenings often.
Dr. Snyder is the best. She takes her time with Harper and has really gotten to know her.
In the meantime, we’re trying to get started with physical, speech and occupational therapy.
Despite the massive amounts of doctor appointments and trying to balance going back to work, it’s nice that we, as a family, are slowly finding our groove and redefining what normal is for us.
It’s definitely a rollercoaster of emotions, but we are in for the ride of a lifetime, and I wouldn’t trade it for the world.