Missed His Heart Anniversary

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Three years ago my husband and I were in a hospital room watching my 4 month old son on a ventilator a day after his open heart surgery, and yesterday I totally forgot that it was his anniversary. It just goes to show how quickly our lives can change and our focus can shift.

When I take myself back to that time I think of what we were going through…..

We had a little boy, Big-C,  with Down Syndrome, we got the diagnosis a day after his birth. We were told he had a heart defect and would need surgery before he was 6 months old.

We spent 10 days in the Special Care Nursery where he was born trying to get him off the oxygen and off the NG (nasal gastric) feeding tube. Required ambulance transfer to Neonatal ICU at a local children’s hospital so we could have access to a pediatric cardiologist. We spent another week in that ICU then he was able to finally come home and meet his big brother, D-Man. No oxygen and no feeding tube, just some heart medication so he wouldn’t go so quickly into heart failure.

Celebrating the normalcy 3 years after open heart surgery. #downsyndrome #funhappinessandlifeOnce home we had regular check ups with our pediatrician (we won’t call those Well Baby Check Ups) and cardiologists. We were fortifying my breast milk that I pumped into bottles because he wasn’t strong enough to latch on and drink from me. We limited our son’s exposure to germs because of his heart we couldn’t let him get sick. We would watch him sleep as he slowly turned blue. We met with home based therapists. We were also potty training our 3 year old and entertaining him while keeping our new born safe.

After being home for what seemed like the quickest 12 weeks I returned to my full time job. D-Man returned to daycare. But due to Big-C’s heart condition he spent his days with my mom to protect him from the germs of daycare. At about 4 months of age Big-C measured at 10 pounds and everybody said he was ready for his Open Heart Surgery.

Yesterday was the anniversary of that surgery, and we missed it. I am glad we missed it. Yes it was a SUPER BIG thing in our family’s life and our son’s. Instead yesterday we had family over for a grill out and enjoyed the weather. We did not reminisce about what we all went through 3 years ago, we talked about the boys and our plans for the summer.

Big-C is finishing up his first year in Early Childhood, we are working on potty training, he just figured out how to jump, he’s going to be taking a literacy class at GiGi’s playhouse, he’s using a PECS system for communication and talking more everyday. D-Man is getting ready for kindergarten, getting more interested in reading, getting over the fear of riding a bike,  and excited about being on summer break.

So glad that this is how our life turned out with our boys. Three years ago we weren’t sure what the next days were going to be like. We were coming to terms with his diagnosis and his heart condition and how we were going to deal with life. Now we are just living life and so happy for that fact.www.funhappinessandlife.com/missed-heart-anniversary

2 Replies to “Missed His Heart Anniversary”

  1. Oh man! My son had heart surgery when he was two days old, and since then he has been diagnosed with autism! I feel you, mama. And yet I feel so fortunate that we are blessed with him, even though he barely speaks, doesn’t follow directions well, and can’t be trusted not to run off and get hurt in a public place. Life is different for the special needs families, for sure.

    1. It is different, but I guess it what our “normal” is.

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