0 In CHD/ Medical Parent Life/ The Heart

CHD is a Thief

I had a vision on how we would spend those first 24 Hours.

I bought a Letterboard, put his name on it. I added July, Pounds, Ounces. All that was missing were those special details. I remember joking with Shane that he better not come in June because I had officially put July on the Board. Pinterest Boards were made with Photo Ideas of those first few hours. I envisioned how Timothy would react meeting his little brother for the first time. Because I had Gestational Diabetes I tried to figure out what my first ‘free’ meal would be. So determined to Breastfeed and do skin-to-skin right aways, I read countless articles in hopes for it to work.

Lounging in my bed with a sweet little babe for the first few days after he was born sounded incredible. Like a mini vacation with the cutest company.

However, CHD is a Thief.

Pinterest worthy photos of those first few hours were replaced of any cell phone photo we could get of our sweet boy fighting for his life so that we would have something. I am so grateful that my Midwife took it upon herself to take those photos for us. That skin-to-skin was replaced with a gentle touch of his sweet, long fingers because that was the best we could get.

Timothy met his baby brother, several days later, in a harshly lit hospital room. The first photos he ever saw of him included big tubes and lots of wires. I started pumping because I knew Breastfeeding was not on the radar. Lying in my bed snuggling my sweet baby was replaced by sitting on an uncomfortable Hospital Chair listening to Monitors.

I feel like I was Robbed.

I do, I feel like CHD robbed me of so many moments that we’ll never get back. I get reminded of it every time I see someone post photos of taking their brand new baby home, ever time someone shares their Newborn Photos – which we never ended up getting. I still feel like it’s stealing a lot of those “normal” moments from us. We’ve learned our new normal, even though it constantly revolves around Medical Talk.

There is great longing to just go about our days. To not count his feed volumes, check NG tube placement, check Vitals, call Doctors, Nurses, Therapists. To not constantly worry about his health, weight, heart. Just yesterday Shane looked at me while we were at a Restaurant, having a fairly normal family dinner, and asked me if I ever worry about Ethan, about there being something wrong. All. The. Time.

Oh, and that Letterboard. Never got used for a birth announcement. My first Meal? A slice of Toast.

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