"I think your baby has a genetic issue, and I hear a heart murmur," stated a pediatrician just a few hours after Jaycee's birth in 2006.
I sat in my hospital bed trying to make the words match my view of my baby. I flash backed to ultrasounds and prenatal appointments. Nothing ever signaled trouble. What was going on?
The next day, I was seated in the NICU when the doctor told me that he was certain Jaycee had Down syndrome. Name an emotion; I felt it. Not only that, Jaycee looked "sick." She was on oxygen, monitors, and IVs.
Hours later, I walked into the NICU room to visit my baby. The cardiologists were in the middle of their testing. I took a seat away from the action and let them proceed. Some poor resident walked over to tell me that my precious baby had a large hole in her heart called a complete AV canal heart defect. There was a picture drawn out and descriptions about blood flowing the wrong way. More words about possible congestive heart failure and heart surgery. I started sobbing. The resident quickly walked away and clearly did not know how to deal with me.
A few days later, the team concluded that Jaycee was indeed in congestive heart failure. Three medications were started. Jaycee spent the first 10 days of her life in the NICU. Then we came home & the work began. I started my new role as a nurse.
At home, Jaycee was being woke up to feed every 2-3 hours around the clock. She NEVER cried for food, ever! She slept nearly all the time. Looking back, she was a sick baby. She was on digoxin, Lasix, and potassium. I remember one medication was 3x a day and one was 2x a day. They weren't all on the same schedule. We kept a book to log all the medications and feedings in order to keep it all straight. There was home nursing visits to monitor her heart. There were lots of doctor's appointments too.
There was so much going on. So many emotions to sort out. And I was completely exhausted. I have never in my life been that exhausted. There was no chance of her "sleeping through a night" because I had to wake her up to feed. Yes, I let a night or two slip when I was at my breaking point or slept through my alarm. But, she had to gain weight for surgery, and that was my only job. Nine pounds was the goal. Even with round the clock feedings, we ended up using higher calorie formula to bulk her up.
When she was 1 month old, we ended up back in the hospital due to dehydration. Jaycee was a poor feeder and the Lasix was making her lose fluids. When the cardiologist put her on an increased dose of Lasix shortly after she was discharged, I was at my wit's end. We sought a second opinion and found a great, new hospital and a different cardiologist, who changed all of her medications.
It's hard to have a baby who needs extra care and facing surgery. We hadn't really had time to get to know Jaycee, and the thought of surgery was scary. The time between her birth and the surgery can only be described as stressful, but that doesn't begin to describe it. There were calm and happy moments too, but lots of things to adjust to.
When she was 3 months old, she got to her goal weight, and surgery was scheduled. We got professional pictures made prior to the surgery, making sure that her chest was photographed. It would be the last pictures without her being scarred for the rest of her life.
We arrived at the hospital 1 day before the surgery for all the pre-operation tests and meetings. We were told all the things that could go wrong. I know why doctors have to tell you those things, but it makes you want to grab your baby and run out of there. On the surgery day, Jaycee was so happy. She was smiling and was so sweet. It made the last few hours with her fun. Then we said our good-byes. We had some tears and joined our friends and family in the waiting room. We've always been blessed with supportive people. We prayed, took communion, and tried to make small talk to pass the time.
Four hours later, the surgery was completed without any complications. A few hours later, we were allowed to go see Jaycee. Forget the NICU, now Jaycee looked "sick." She was hooked up to so many lines, tubes, and monitors. She was sedated and on a ventilator. We tried calmly talking to her but her heart rate went up. We had to simply look and wait.
Over the next few days, things slowly come off of Jaycee. The only thing she couldn't shake was her oxygen. She stayed in the hospital for 6 days. She was sore. We had to pick her up by scooping her (not by picking her up under her arms).
Jaycee came home on oxygen. There's a lot to say about oxygen use but maybe another post. When we got home, we had to clean her stitches on her chest. She couldn't be submerged in water for a short time. My nursing skills grew even though I really didn't want them too!
The first few weeks of recovery, we had to keep Jaycee isolated. But, before we knew it, she was ready to get back out to church and other public places with her oxygen tank in tow for the next three months.
In time, Jaycee's scar healed and it looked like an exclamation point on her chest. I could feel a bony growth on her sternum. You could see the "growth" too. The doctor told us it was calcium deposits that collected there due to the surgery and that we shouldn't be concerned. It did eventually even itself out and there's no longer a weird bump on her chest. Although for some time, it did have me worried.
Subsequent heart checks indicated Jaycee just had mild leaks and that surgery was a success! We were relieved that Jaycee's heart was fine, and this was all behind us. Or so we thought........
To be continued next week.............