I never wanted to be a heart mom.. but I was chosen to become one

We got home and settled into our routine, adjusting to life as a family of four. Our dog was very curious about “the smelly, loud thing” we brought into the house, but he was a fan of the days on the couch snuggling. We began to notice that Chaos was having some trouble eating, we would scream and cry when a bottle was offered to him. Thinking it was gas or colic (you know normal newborn things…), we headed to the pediatrician’s office. 

The condensed version of the day is as follows:

• His oxygen was in the 70’s, and he was pale. He was jaundice while we were at the hospital… we had no idea his coloring was that off. (give us a break we barely knew the kid)
• Chaos and mama got an express ride via ambulance to the local hospital (where he was born), but the EMT told me during the ride that we would more than likely be ending our night at BCH. 
• Took our pitstop to get triaged, get an x-ray, got some fluids etc. And it was confirmed we would be heading back to BCH
• The storm troopers came to pick us up, I opted to ride with Chaos this time, C followed us in. 
• Our first nurse Mr. N, saw us coming down the hall and said “Excuse me… This was not the plan sir!” and Chaos was back to his baseline, relaxed amongst the mayhem of the Cardiac ICU
• During his admission workup, a fellow made a comment that “He does not seem to be thrown off or agitated by the noise/lights etc”. C laughed and said “Thats because he’s spent more time here than at home… this is a return to baseline for him” 🤦🏼‍♀️

Since it was a Friday, and we had a better feel of the  way things worked — we asked if it was okay if we both stayed, knowing that one of us would have to be awake and at bedside while the other slept. We did that until Sunday, and then C and I alternated nights home & at the hospital — so one of us was always there. Turns out as he grew and his body adjusted to the outside world, he needed a med balance — his lungs had started to fill with fluid, which is why his oxygen was low. So once we figured out his meds, we would be good to head home… or so we thought. 

Well Chaos got necrotizing enterocolitis (NEC) — basically dying intestinal wall. NEC is not uncommon with babies with heart defects— but apparently not common with his heart defect. Since he was already inpatient getting this diagnosis was relatively quick. It was blessing that we were there. He had to go on total gut rest for 7 days. He knew about bottles at this point, hes about three weeks old, and for 7 days he couldnt eat. It was torture. He was on IV fluids, nutrition, and lipids, and he got a PICC line in his femoral artery.  

This turned into a three week stay really quick. We had to reintroduce formula very slowly, and make sure he could tolerate it. He had to be on a more broken down formula that would not be as hard to process in his gut, AND since he was in the 0.1%ile for weight his formula had to be fortified. Kid was essentially drinking milkshakes.

By now we (and by we I mean his team of medical professionals) had figured out that he needed surgery to repair his ASD and left mitral valve. Because of course there were two issues, and not just one. The overall goal was to get him to 12 weeks old, or as close as we could to that benchmark. His heart needed time to grow & strengthen a little, and we had to chunk that baby up a bit.

By the time we got the go ahead to go home, it was the end of August. As an educator, I thought I would have a blissful six weeks where I was getting in the swing of motherhood before my official maternity leave started on the first day of school… Jokes on me, Chaos spent four and a half of those six weeks at BCH.

We left, were home for a full month, then went back for surgery when he was almost 11 weeks old. He was working a little too hard to breath, so things got bumped up a bit. His surgery went great, he had an incredible team — we were lucky to have acess to the best pediatric cardiology department. Healthcare workers across the board are legitimate earth angels, and seriously do not get enough credit for it.

My baseline for chaos in parenting is handing my 11 week old son over to anasthesiologists for open heart surgery. Anything feels more manageable than that…

Okay thats it for the trauma dumping 🫀 But sometimes a little background is key.