When Candice went into labor with her first child, she never dreamed that she would soon be saying “good bye.” She has written about her journey of love and loss of her son Alex in the hopes to raise awareness for Hyplo-plastic Left Heart Syndrome. She begins the series by telling her story.

Read the entire series here.

Hope. Happiness. Joy. Excitement. These are generally the things you think of when you are preparing for your baby. You spend countless hours visiting doctors, taking pictures of the growing baby, decorating a nursery, shopping for everything tiny, picking out the perfect name, and just thinking/dreaming about how everything will be when they arrive.

The arrival of my first-born was anti-climactic. We were induced, my water broke, I was supposedly having contractions (although I never felt a thing), and 12 hours later I was wheeled to an O.R. for a C-section. Alexander Cole DeLeeuw was born at 5:55 pm on January 26, 2006. He was 7 lbs., 10 ounces of perfection. I loved him from the minute I laid my eyes on him. He scored a 9.9 on the APGAR and all the nurses kept coming to see the cutest baby.
The first evening is blurry from the drugs, but it didn’t matter because I was going to have the rest of my life to hold this little guy.

Alex arrived to me the next morning, while my husband had just stepped out to head home for a shower and a nap. The nurse handed me a bottle and my placed Alex in my arms. I was on morphine, alone, tired and still connected to a catheter but what mom is going to say no to holding their child whom they hadn’t seen all night? Alex was indeed perfect. Not once did he cry. For two hours I held my son and tried to feed the little guy, but like me he was exhausted so I let him sleep. In retrospect I realize these two hours of just me and he in my arms against my chest was a gift. Within two hours my mom and husband would arrive. Just five hours after he was placed sleepily in my
arms he was taken to the nursery for regular rounds and check-ups. We hurriedly took a “family picture” before he left not realizing this would be our only family picture.

Within minutes, a nurse scrambled into our room wondering what color our son was when he left the room. Confused, we couldn’t understand how our son got mixed up with another child. Amongst accusations and misunderstandings our son was in the nursery fighting for his life and the hospital we were at didn’t have the technology to figure out why. Thankfully the Pediatrician, being a Duke University Medical Graduate, called Duke Medical Center and told them his symptoms. They told her to give him Prostaglandin to keep his PDA (patent ductus arteriosus) open allowing his heart to function as if he were still in the womb until they got there.

I am not sure how much time passed from the time we got the news that something was wrong with our child until the time they wheeled him in an incubator to our room before his flight on Duke Life Flight, but I do know that it was a whirl wind. Although he was stable, he was not “safe” they still weren’t sure what exactly was going on. We were frantically making plans for my dad to arrive, calling our friends/family to be in prayer, making arrangements for my mother and husband to make the two and a half hour drive to a place they had never been in the dark, while friends stayed in shifts with me during the night.

My husband who checked my mom into the hotel and went straight to the NICU at Duke Medical Center found out the devastating news alone. Our perfect son was born with one of the most severe heart defects, Hyplo-plastic Left Heart Syndrome. He would not live without surgical treatment.

I was able to leave the hospital I was at the next afternoon and we drove to Durham, NC to see my Alex. Until this point I really believe I was in denial. I honestly felt Duke was going to “fix it” and then send him home and he was going to go home with me. Being wheeled to the very back of the PICU (Pediatric Intensive Care Unit) and seeing my son laying there with wires and tubes everywhere was heart breaking. I was so exhausted emotionally, I didn’t know if I could handle any of it.

Within the next few days family was arriving from all over the country to be with us. During this time Alex’s condition was better explained to us and we were given three options: (1) let nature take its course and they would make him comfortable (2) put him on a heart transplant list and wait for a newborn heart (3) undergo three open heart surgeries within a course of 3-4 years. With Duke Hospital being one of the few hospitals that even does
surgeries for HSLS patients, and the thought of waiting for another child’s heart, we chose the three surgeries.

Alexander was scheduled for his first open heart surgery on Feb. 1, when he was just six days old. I held him for six hours straight that morning because they told me that it might be a while before I got to hold him again, depending on how he did in surgery. Surgery went well and we were able to see him 6-8 hours after his surgery. We were told not to touch him because it could startle him and we were warned about how he would look. He would be on a ventilator, he would have chest tubes coming from his chest, amongst many other monitors, and his chest would be open. Having his chest open with just a thin film over it was probably the hardest thing to see that night. It is very shocking to physically see a heart beating, when all your life you have only seen them covered. You start thinking differently about hearts after an experience like this. We talked to him for a minute and then left him to rest.

In the early morning, we were woken first by our cell phones, which I couldn’t get out of bed fast enough to get, and then by the hotel phone. The nurse told us there was a complication, but he was stable and we were to come into the hospital. She sounded very calm and being woken up I was confused. Brandon had a job interview that morning and I was asking her if he could come after that, she then told me we both needed to come there now. The words “now” woke me up to realization that it was not good. We frantically rushed around throwing on clothes and banging on my parents hotel door. I am really now sure what I showed up to the hospital in, but one thing is for sure I was probably one “hot mess.”

After being buzzed into the PICU the doors were automatically opened and I am really not sure how they didn’t just close right on top of me, because I felt like I was in shock by the sight I saw. At this point Alex was in room 2 which was directly across from the entry door and therefore when the door opened I could see all the commotion surrounding his bed. There were the brightest lights I have ever seen somehow shining in his room, with a lot of medical professionals surrounding his bed and even flowing out the door.

It seemed hectic and very overwhelming for me. We were not allowed to see him but were immediately directed to the conference room. I will never forget the emotion of urgency and fear that I felt at that very moment. It wasn’t until this time, that I felt like I might actually lose my son.

In the conference room we were told that he has gone into cardiac arrest. For twenty minutes our cardiothoracic surgeon massaged his tiny heart in his hand until it beat again. He was immediately placed on ECHMO (heart lung bi-pass machine). This machine would circulate blood through an artificial lung back into the bloodstream, providing adequate oxygen giving his heart a chance to “rest.” We were told that he should remain on this for a few
days and they would begin to try and take him off the machine. They did not want him to stay on ECHMO for more than 6-7 days. Alex was on ECHMO for 13. While on ECHMO, he was developing his little fighter personality. I know it is hard to imagine that a baby who is just a week old has a personality, but he did. I would tell him that I was going to eat or pump and he would squeeze me finger (which was permanently placed in his right hand) and push out his bottom lip. That would always by him at least 20 minutes before I would attempt to leave the room again.

Throughout the next several weeks Alex continued to fight for his life. He was placed on the heart transplant list because his heart no longer had its elasticity needed to pump blood for a growing body. This was a difficult circumstance because you realize in order for your newborn to receive a heart someone else has to lose a newborn. However, we did not let this effect our time with Alex. We had one rule and that was to stay positive. At no point
was anyone allowed to cry around him. We wanted him to be surrounded by happiness and joy. I would read to him, sometimes Gossip Magazines and we would laugh (well me) at all the silly things people were worrying about. I would share stories of myself and his dad with the nurses so that Alex could hear about how funny his daddy was. Most the time it was just Alex and I and a nurse. Brandon was two and a half hours away maintaining the house and working so that we would have a home to bring him home to. Brandon would come and visit and stay with me at the Ronald McDonald House on his days off. When Brandon would come to visit it was always fun to see Alex react. He would hear his daddy’s voice and he would open his eyes so wide looking for him. He loved his daddy!

Alex eventually stop peeing which at first we hoped was just an effect of the cardiac arrest and would return to full function. We tried dialysis number one. This worked for a while, but then it stopped. We tried dialysis number two. Alex was swelling up and half of his body was turning purple. We were always very honest with the staff and told them that we wanted to prolong his life but not his death. We asked them to please let us know when we were no longer prolonging his life, because we would have a hard time determining this.

For weeks I rubbed Alex’s face, held his hand, and massaged his cute little feet. It never really bothered me that I didn’t get to hold him because I knew that he needed to get better. On March 5, the nurses blessed me with a wonderful gift. They allowed me to hold Alex. What a wonderful day this was! Even though it was really snuggling more so than holding … it was a blessing.

Then the second dialysis failed. On Monday, March 12 Alex was breathing over the ventilator. This is generally a “good” thing. But for me it was nerve wracking. Due to his swelling, I was concerned if they took him off the ventilator and he needed to go back on it they wouldn’t be able to intubate him. At that moment I prayed that if God were going to take my son, that another organ would fail so that I would know what to do. The next morning he was back on full ventilator support.

March 17 was unlike most mornings for me. I woke up in a jolt and the felt an urgency to get to Alex. I rushed around and arrived in record time. But he was fine, just a typical day. But it still wasn’t. I had the song, “Better is one day” playing over and over again in my head and I began to journal for the day to Alex writing the words to the song. I just kept thinking, “Better is one day. It is better to be in the Lord’s presence.” In the middle of my writing the other cardiothoracic surgeon for the Ped’s came into Alex’s room. He introduced himself, which I knew because some of the friends I made in the PICU, had him for their surgeon. He then discussed with me Alex’s condition and the prognosis he felt for him. He was very kind and very to the point. He was telling me what I felt all along. It was time. We had reached the point where fighting wasn’t an option. He had loss full kidney function. The only thing they can do is a kidney transplant, but since he needed a heart transplant as well, his body would most likely not be able to sustain both transplants. We scheduled a “family conference” for the next morning.

After hearing this the nurse asked me if I would like to hold Alex. I sat there staring at my little boy who was losing the fight. Although I would give anything to take his place, I knew he was going to get the ultimate healing. While I was rocking him his cardiothoracic surgeon came in. He choked back tears as his discussed with me Alex’s condition of his heart, his kidneys, and now his lungs as well. Boom … answer to prayer. I remember looking at him and telling him that it was okay. I knew he did everything he possibly could and that we would have a conference in the morning when Brandon got there.

The next morning, we had our “family conference.” Although, both Brandon and I felt an odd peace to it all, we still had tears running down our faces at the planning of “giving up.” That night at the Ronald McDonald House was the most difficult. We questioned our decision and just asked God that he would do two things: make it apparent when we walked into the room that we were doing the right thing and have his death be peaceful.

The next morning we walked into the room to see Alex and it was hard to believe he was even my child. He was so swollen he could no longer lift his arms or open his eyes. He had four and a half liters of extra fluid on his body. We knew in that moment we were absolutely doing the right thing. Alex would no longer suffer. We were given the entire day to spend with him. He was heavily sedated so that we could hold him without discomfort to him. Several
friends and family members came to say good-bye. When we took him off life support we asked that only medical staff be with us. Many of the doctors and nurses became our friends and family in the seven weeks we were there. We knew they would give us the support we needed without us feeling like we had to support them. We knew by just having us in the room we would be able to focus on our last moments with our son. This was one of the best decisions we made.

We played the Jack Johnson, Curious George Soundtrack that one of the nurses had made for us and we played constantly in his room. I sat on my husband, Brandon’s lap, and Alex was placed in our arms. They turned off all the machines (which when you are used to looking at machines 24/7 is a little odd) and removed his ventilator. After they removed it I started crying because he was so beautiful. This was the first time I had seen his face without tubes and tape since he was born. After 20 minutes Alex took his last breath. It wasn’t frightening or gasping, it was like a sigh of relief. We will forever live with the wonderful memories of our little fighter, Alexander Cole.

I share this story in such great detail because after losing Alex I wanted to hear the stories of people who had gone through it too. I wanted to know every detail. I wanted to know that they understood the feelings I felt. I also wanted to know the child. Every story is different, even for kids who have the same heart condition. Every story is a memory of that child’s life. I am proud to say that I am the mom to a CHD Angel.

 

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Category: Guest Author

Tags: babies