Loving Caleb

Kim and Caleb, October 2011

By Kim Harris

Hello, worry; welcome back. This is exactly how I felt when I got pregnant. I was always a worrier and for me, pregnancy was no different. I would call my mom throughout the day, crying. I was worried. What’s new?

What I worried about was so trivial at the time, but I didn’t know it. To me, they were legitimate fears: Would I love my child enough? Would I know what to do with a boy? What if I didn’t bond with my child the way a mom is supposed to? What if I became angry at him when he took my sleep? What if I couldn’t handle motherhood the way I thought I could?”

Never once did I ask, “What If he’s not healthy?” I assumed he was. Every appointment showed a good, strong heartbeat. I was in my 20s and in good health. That means I’m guaranteed a healthy baby, right? I soon found out how very wrong I was.

Kim with Caleb, shortly after his birth.

On Dec. 22, 2009, my life was forever changed. Caleb joined this world at 10:06 in the morning. Instantly, I was in love. I immediately felt my world change. I knew in that second he was given to me, that I had a gift, a responsibility, and I would die for my child.

I was overwhelmed with emotion. I remember my parents being there, and a great friend had visited. I let everyone hold Caleb as much as they wanted, and I just kind of laid back and took in the fact that I was now a mom. I figured I would let everyone enjoy him now, and I would get him all to myself in two short days when we were discharged and at home. Sometimes, I regret that. I wish I would have held him more, and snuggled up with him more, but I had no clue and had no way of knowing what was to come.

I decided early I wanted him in the room with me all night. My heart was so full of love and I just wanted to fall asleep knowing my baby was next to me, safe in my room. I didn’t want him in the nursery. Around 10 or 11 p.m., I had Caleb in the bed with me and I was studying every part of him. He looked just like his dad. He was so peaceful. He was a little purple, but I figured every newborn looked like that. He was perfect and my life felt complete.

I had been awake for 36 hours and it was finally taking its toll. I realized I couldn’t have him in the room with me. As much as I tried to fight it, I had to call the nursery to come get him. They were my saving grace in more ways than one.

I finally drifted off to sleep, and around 2 a.m., a nurse woke me up, telling me there was something wrong with Caleb’s heart, but they weren’t sure what. A lot of things were thrown at me and I can’t remember it all, mostly because of lack of sleep, pain relievers and pain. I remember my husband telling me it wasn’t that big of a deal. That worry crept back into my head; I said, “It has to be bad if they’re rushing him to another hospital.”

About an hour later, we were allowed to see him before he was rushed to Shands Children’s Hospital in Gainesville, a hospital that at that point, I had never even heard of.  Caleb was in an incubator and now he looked like something was wrong with him. I don’t know if the wool had finally been taken off my eyes but right then and there, I knew something was wrong and he no longer was my “perfect” baby.

They discharged me a day early to be with Caleb the next day. We went home, got changed, and off we went to this hospital we knew nothing about. We went to the Shands’ neonatal intensive care unit and saw Caleb. It was terrifying. He was on a ventilator and had monitors everywhere. The beeps were too much. I wanted someone to tell me what was going on. I felt completely alone, although I wasn’t.

Caleb, while he waited for a heart.

Dr. Gonzalo Wallis met us in a conference room where he told us about Caleb’s diagnosis —several congenital heart defects that make up hypoplastic right heart syndrome (the right side of Caleb’s heart did not completely form during fetal development). Dr. Wallis assured me that nothing I did while pregnant caused this. I knew that in my heart, but I still couldn’t help but feel guilty. I remember Dr. Wallis and my uncle, a pediatric nurse, said I could be thankful Caleb didn’t have hypoplastic left heart syndrome, because that was so much more dangerous. “Finally,” I thought, “some good news.”

Caleb with one of his nurses.

We learned Caleb would need open-heart surgery in a couple of weeks. I felt awful for my child. He’s so tiny and no one that little should ever have to go through something that serious. I knew it had to be done, though, and as much as I hated it, I understood and gave consent.

On Jan. 7, 2010, before his surgery was to take place, Caleb had a heart catheterization (to make sure everything was just as it looked on his echocardiogram). I went down with them to take Caleb to the pediatric “cath” lab. Right before Caleb went back, he started to cry heavily, and he was swelling. His eyes were swollen and he turned even more purple. I kissed him through my tears and while they took him in, I turned to my family and broke down in tears. I knew he was sick and I couldn’t do a thing for him. It was unsettling.

The results came back from the heart cath: his coronary artery had sinusoids, or, as it was explained to me: pressurized blood vessels. Shands’ congenital heart surgeon Mark Bleiweis told me that if the first surgery was attempted, Caleb would have a heart attack and die. Our only other option was a heart transplant. I felt my world end right then and there. I knew nothing about transplants and to hear everything I was hearing was horrible.

After meeting with Caleb’s cardiologist and surgeon, I couldn’t take hearing anything else from anyone else, so I left alone and wandered the halls, crying. All the mundane worries I had before seemed so pointless now. All I wanted was Caleb to be healthy and home.

I remember listening to a nurse talk on the phone about buying a new house and how excited she was. It was hard to hear people’s lives going on, when my life was at a standstill. It was like every person around me was moving and I couldn’t move. I wasn’t able to, as much as I wanted to. It were as if someone were holding my hands behind my back and parading me in front of Caleb, telling me to help him, but I couldn’t. I was helpless in more ways than one.

I sat in the middle of the 3^rd floor at Shands and cried harder than I think I have ever cried in my entire life. I didn’t care about all the stares I was getting. I didn’t care if I looked like a mess. My world was crumbling before me and I just wanted to curl into a ball and die.

The next three months were a blur. There were days when I had this overwhelming sense of confidence and strength, and I just knew I could do this. I would laugh with the nurses, with whom I had become close. I even looked forward to going to the 3^rd floor.

Then there were days when I was in a dark place. I wanted to throw my hands up and say, “I’m done.” I would see parents come and go from the NICU with their babies in tow, or I would hear them cry out when they were told their baby had to stay four days for jaundice. I would get angry. I wanted them to know how much I would love it if jaundice were the only reason we were in the NICU.

I begged the nurses to move me away from everyone else because it was too hard. I was becoming angry and bitter. Toward the end of Caleb’s stay in the NICU, he took a turn for the worse. He couldn’t eat by mouth anymore. He was fed everything through a nasogastric feeding tube. He couldn’t tolerate his meds anymore. The tissues around his bones were inflamed. He was swollen all over. He didn’t look like my child. I couldn’t hold him. He would squirm and cry in pain when we changed his diaper.

Caleb, just after open-heart surgery.

The doctors met and decided they couldn’t wait anymore and they were going to go ahead with the “bidirectional Glenn,” which is the second stage of the three stages of surgeries (the first is the Norwood and the third is the Fontan).

Talking to Caleb after surgery.

They took Caleb back to the operating room on March 16, 2010. I couldn’t watch them wheel him away again; I stayed at the Ronald McDonald House. I didn’t want to tell him “goodbye.” It was too gut-wrenching. I wanted to remember him from the night before, when he actually had a good night. It was like he knew the next day, he was having the surgery and he would start feeling better.

 

The days after his surgery were tough. He was in a lot of pain. It had been so long since he had eaten by mouth, he forgot how to do it. He went through withdrawals from the pain meds, he got an infection at his incision, and he had a blood clot in his leg. It was a roller coaster. 

He stayed in the Shands’ pediatric intensive care unit for five weeks recovering from his open-heart surgery. He went home with a feeding tube. All of his meds and formula were to go in there. He started having violent episodes of vomiting. Seriously, it was like something out of The Exorcist. They determined he had gastroesophageal reflux, a severe type of acid reflux, and started him on meds for it.

During Caleb’s recovery, I watched a new baby emerge — one who smiled, giggled and cooed. I hadn’t really seen or heard that before. He was a quiet baby in the NICU. Now he was getting a personality and I loved every minute of it. My own personality started coming back. I noticed that once he started changing, so did I. My strength was back. My sense of humor was trying to come back. I felt more like me than I had in a long time.

While Caleb was in the NICU, I remember meeting Dr. Jay Fricker, chief of pediatric cardiology at Shands/University of Florida College of Medicine; he is now Caleb’s cardiologist. I thought he was very serious and needed to laugh more. Obviously, the NICU isn’t a place for laughter or joking, but I told myself that once I was out of there, I was going to make him laugh. It was my goal and my day would come.

On April 19, 2010, just three days before Caleb was 4 months old, he finally came home with us. It was a bittersweet moment. I was beyond elated to finally be a mom. I hadn’t felt like one yet because Caleb’s nurses did most everything I would have done if we were at home. At the same time, I was scared beyond belief. “What if something goes wrong”? I don’t have the comfort of a nurse right beside me.

The ride home was surreal. I think we drove 10 miles per hour under the speed limit. It was odd to see this tiny person next to me in the car and know all he had already been through, and now we were going home to try our hand at “normalcy.”

The first night was a rush I can never explain. It was amazing just to sit at home and watch TV with my husband and dogs, and with my child in my arms. I never thought that day would come. It filled my heart with the love I remembered feeling four months before when Caleb was born.

At our first appointment with Dr. Fricker after Caleb was discharged, I told him how much I hated how he, the nurses — pretty much everyone — called me “Mom,” instead of by my name. My name is not Mom. I understand they have so many patients and families that it’s impossible to remember everyone’s name, but I feel like the only person who’s allowed to call me Mom are my kids, and these doctors and nurses are absolutely not my kids!

Now it’s a running joke between Dr. Fricker and me. We saw each other at a conference recently, where we both wearing nametags. Caleb had an appointment the following week and I told Dr. Fricker I was wearing my nametag so he would be sure to call me “Kim.” He laughed! It was one of many times since Caleb has left the hospital that I’ve made Dr. Fricker laugh. He’s done well calling me Kim, with only a few slip-ups here and there, which I have forgiven.

Something I remember Dr. Fricker telling me is that I have one of the best personalities of any of the parents he’s met. He said I always have a smile on my face. That hasn’t always been the case, but watching Caleb thrive and knowing how he has changed my life has completely changed my outlook on life. I don’t worry nearly as much as I used to about the trivial things.

Caleb, today. A funny, smiling, beautiful little boy.

I still worry about Caleb’s health, but I try to live every day for today and not tomorrow. I think back on everything we went through, and if I were given the opportunity to do it all again, knowing what I know now, I would do it all again without changing a thing.

My “heart baby” has given me a new purpose to life and a new joy I never expected. I’ve met amazing heart families and doctors who have given me hope and strength, as well as lifelong friendships that mean the world to me.

Right now, Caleb is in his crib babbling away and saying “mamamamama.” It just feels right hearing that from my little miracle. Nothing can compete with that. He is doing amazing! He’s walking, talking and eating like a champ (the feeding tube was taken out in November 2010).

We have another surgery soon (the Fontan procedure) and possibly, one day, even a heart transplant. But I know now, I can handle this, and more importantly, so can Caleb. This “mom” thanks the wonderful people at Shands who did, and continue to, go above and beyond for us We have an amazing team and support system around us that really makes a world of difference.  Thank you for giving me Caleb back to me.