First Open Heart Surgery

This is part three of my CHD son’s story. To read part one, click here. To read part two, click here.

There is a picture of my son after surgery which could be considered graphic or a trigger, read on with discretion.

My son, one day old in the NICU. He is still on the blue scale but the doctors felt he was doing well.

After being taken to the Children’s hospital, my son was observed and found to be stable enough to not be in the NICU. This was a good thing.  The children in the NICU have to be on so many different monitors and the rooms were not designed to allow parents to stay overnight. We were moved to “the floor” and it was decided that he would have his first surgery at 6 days old.  They would put a band on his Pulmonary Artery that would stop his lungs from overflowing with blood.

I was told that I couldn’t feed him past 6 am so I got up and made sure to nurse him.  I was sad that he was so sleepy, he didn’t want to eat much.  I remember rubbing his chest and thinking how it would be the last time I saw him with out a scar for the rest of his life.  The doctors came in and took him and I was given a pager and sent out to the waiting room.  I can’t remember much about waiting.  I know I was nervous. I know I was trying my hardest to not show stress. I was trying to remind myself that this surgery was relatively safe, as far as open heart surgeries go.

This surgery went for a few hours and then we had to wait as he was taken back to the PICU (pediatric intensive care unit) and settled in before we could go see him.  The first time we saw him was very alarming.  He had SO many different tubes and wires coming in and out of his body.

He had:

A temperature sticker on his entire forehead

A tube in his nose

An oxygen monitor on his right hand

An IV in his left hand

An IV port in his right leg

A temperature line in his bottom

A catheter

A blood pressure cuff on his left leg

Several wires on his back to monitor heart rate and pulse

and a tube going straight into his chest in order to drain excess blood from his heart.

I had to stop myself from running out.  But after looking at him for a moment I was able to separate all the wires from the child underneath them.  He was out and asleep and I couldn’t hold him, no matter how much I wanted to.  The nurses kept telling me to drink plenty of water and to pump so I could keep feeding him when he was able to be up again.

That night they felt he was stable enough to turn off the extra oxygen he was getting and they took out the nose tube.  He had the pain meds through an IV for about 2 days as they weened him off of it.  The tube in his chest stayed for a few days until all the blood was drained as well.

I think it was a little over 24 hours before they felt he was stable enough for me to hold him and then we got to battle it out over feedings.

This kid.  What was so distressing at the time is now funny.  I would put him up to my breast and he could smell me and sense there was food.  But instead of opening his mouth he just kept rubbing his nose all around instead.  It took two feedings at about a half hour each to get him to figure out he had to open his mouth to eat!

Just before being sent home my son had all but the most basic wires removed. His stitches are still very visible and were not taken out for about 2 weeks post-op.

After about 3 days in the PICU we were discharged to “the floor” where there were a few less monitors.  At this point, as I was warned while pregnant, I was expecting a two-three week stay in the hospital as he recovered.  I was SHOCKED to hear that he could go home the next day.

We were completely unprepared (still living in hotels!) and all the girls were sick as well as me not having recovered at all from having given birth in the first place. We had to scramble to find a new place to stay because the Ronald Mcdonald House would only allow families to stay until the day after a patient is discharged.

We scheduled another appointment for the following Monday to check in with the cardiologist who would be our primary care for the next several months.  My son came home on many medications which were slowly cut back. Ultimately he remained on only one medication that he still takes today.