Hellobee

This is a guest post series by C. You can read Parts 1 and 2 here.

Pre-Op Day

Pre-op day was grueling for us and our baby. The day he turned 3 months old, we sat down in a room with his surgeon. We asked, practically begged, to know if there were any other treatments. I still don’t think we understood the severity of his defect at that point. His surgeon was so kind and patient. He told us unequivocally, that without surgery our baby would not live to see his first birthday. If he didn’t operate soon, he would be on a heart lung transplant list by 6 months old. The shock of his words unnerved me.

The surgeon and anesthesiologist then explained to us the heart-lung bypass machine. In order to operate on his heart, they would first have to stop it. Once they stopped his heart from beating, the machine would take over pumping blood for his circulatory system. This is not without risk, and the risks get bigger the longer you are on the machine. So not only did we want a surgeon that could operate on his heart which was the size of a plum, but they had to do it fast.

There was one bright spot in having his surgery moved up. Due to vacation schedule coverage we would have the surgeon that usually works on complex cases and heart transplants. Even though our son had a simple defect, his case was assigned to this surgeon because it was urgent.

The doctors listed off all the things that could go wrong in the surgery and recovery. Normally, my mind would dismiss these risks, but once you have one terrible thing happen to your baby, you no longer think it can’t happen. My husband and I both felt physically ill just listening to everything that could go wrong.

After meeting with the doctors we toured the PICU, which was helpful and upsetting to know we would be there soon. Lastly, we had to take him for blood draws which was incredibly difficult because he was so dehydrated. Both my baby and I cried while I held him down for his blood draws. I was thinking, if I can’t handle this, how will I handle the surgery tomorrow and the PICU stay?

We left very early in the morning to take him to the hospital. The entire ride I was strangely at peace. I knew that we had gotten him to 10lbs, 3 months old and one of the best surgeons in the country. There was nothing more we could do and our sweet baby boy was fading fast.

After checking in and taking his vitals, the nurse took us to a private exam area, and gave him a sponge bath. She softly wrapped him in a warm blanket. Then my husband and I took turns holding him. We gently rocked and sang him to sleep. The anesthesiologist arrived to take him back to the OR. He said a few times that he was ready to take our son back. I finally summoned all the strength I had to hand my baby over for open heart surgery.

The last thing our baby saw before surgery was us singing to him, which gave me some comfort. My husband and I watched the doctor walk out the door cradling our sweet baby boy. The weight of what was about to happen to him hit us like a ton of bricks. We both broke down.

My husband and I picked ourselves up and made our way to the waiting room. My dad and a dear friend stayed with us. Throughout the surgery a nurse in the OR would call us on the phone in the waiting room to tell us updates. We just tried to distract ourselves. After an hour passed we began to get nervous that something had gone wrong, and worried that the minutes were adding up for how long he was on the heart-lung bypass machine.

Finally, our pediatric cardiologist came in and smiled. The surgery had worked! She could see from an internal echocardiogram that his heart was functioning well. She laughed and said she was stealing the surgeon’s thunder by delivering the good news first, but she couldn’t wait to tell us.

Next the surgeon came in and explained that the surgery went perfectly. The hole had been so big that he could have fit his entire pinky through it, and the blood vessels to his lungs were in more danger than they had realized. However, the patch on his heart was working! Even better news, our baby was on the heart lung machine for less than an hour and he was being extubated. He would not be on a ventilator as expected. This was all better news that we could have hoped for! I’ve never felt such joy and relief in my life. This time my husband and I cried happy tears.

PICU

About an hour later we are allowed to go up to the PICU to see him. I was dreading seeing my baby post-op. When we walked through the door I wanted to cry. It didn’t look like him at all and the medical equipment was overwhelming. But there was our sweet baby boy looking up at us. We got the nerve to look down at his chest. I was prepared to see his wound and instead saw the most beautiful sight. With each breath, his chest would gently rise and fall. He was finally out of respiratory distress and breathing easily! That moment made the agonizing 3 month wait for surgery all worth it.

I would love to say the PICU stay was uneventful, but the reality is that your baby stays there until they are stable, and so he had setbacks. We found it immensely helpful to be at morning and evening rounds. We were part of his medical care team, and able to make decisions with the doctors when respiratory distress or pain management issues occurred. One thing that was very difficult was that we couldn’t hold and comfort him until his chest tube and some lines were removed. We could only give him his pacifier dipped in sugar water, play his music mobile for him, or gently touch him between the wires and tubes.

By the second day post-op, his chest tube was ready to be removed. I’m so grateful the nurse warned me that taking the chest tube out would be extremely painful for him and distressing for us. We were able to request morphine for him before the procedure. Then we had to step out to the hall while they removed the tube. It was the most gut wrenching thing to hear him cry out in pain while that was being removed. It was killing me to not be there by his side. Even now when he cries, I find myself telling him, you’re not alone.

Later that day the surgeon was worried about his blood pressure being so high, likely due to pain. Instead of upping his pain medicines, he thought our sweet baby just needed to be held by mom and dad. They removed more lines as I waited nervously to hold him. The nurses carefully placed him in my arms, and he immediately began to relax and his blood pressure stabilized. It felt amazing to finally be able to comfort my sweet baby boy.

We made it out of the PICU and into the step down unit, but by that time it was all too much for our sweet baby and he stopped eating. The feeding tube insertion was terrible. We felt defeated that he needed this, but the doctors explained that it was a temporary measure to give him energy to bounce back. I’d like to say I handled this all gracefully, but I was a crying mess at this point. I took the advice of my good friend, and went to the garden for air. Thankfully, the feeding tube was removed before we went home and our baby was stable.

I will forever be grateful to the kind, smart and professional doctors and nurses that took care of our baby that week, and all the other heart babies that pass through those doors. At this point, we thought we would be settling in for a long hospital stay. We didn’t realize events unrelated to our baby would cause our plans to change once again. Discharge day was coming fast.