“My husband and I had tried for years to have a second child to complete our family. With a few miscarriages and no other success we were about to give up when we found out I was pregnant. I was very cautious at first, not getting myself too hopeful. That first ultrasound when I saw that little heart fluttering away I cried, I was going to be a mommy again. My fears of not being able to “complete the family” were gone. Little did we know what that little fluttering heart had in store for us. My due date was set for October 18th 2007.
My 20 week ultrasound looked normal. 10 little fingers, 10 little toes and 3 legs? Yes, we were having another little boy! We were extremely excited (grandma wanted a little girl to play dress up with but oh well). I had 2 more ultrasounds to check my cervix because I had given birth to my oldest son a month early, and they were trying to prevent that from happening again. Every time, she would check the baby make measurements and say that everything looked just fine.
October 17th, a day before my due date I went into labor. I was expecting a very normal delivery but here is where the “fun” started. The baby was breech so I had to have a C-section. I hate needles so this did not make me happy. At 9:15 Delvin James “DJ” was born, 8 pounds 10 ounces 21 inches long. He looked so perfect that we still had no idea how sick he really was.
My heart sank when Terry, my husband, came into the recovery room and told me that DJ was in the NICU (Neonatal Intensive Care Unit). Harrison, our oldest, had to spend a week in NICU and we were both really looking forward to having a normal, healthy baby. That’s when he told me that his O2 levels were low and he had a swishing sound in his heart. They were calling in a cardiologist to check him out.
4:10 pm … I remember the time so well. A doctor came into my room to give us the news we had waited all day for. Dr. Washington told us that the news wasn’t good, DJ had holes in his heart and his pulmonary valve had never opened. He gave us some long name that I still can’t remember and made drawings of a good heart and DJ’s so that I could see exactly what he was talking about. I remember thinking “please leave, I don’t want you to see what is about to come.” I could feel my heart in my chest beating a million miles a minute as I tried to keep myself together. He kept assuring us that it was fixable with surgery.
I don’t know if he was out of the room or not when the dam broke. My heart breaking a little bit more with every tear that escaped. How could this be happening? Why my baby? What had I done wrong this time? In the back of my mind I still blamed myself for Harrison’s early birth. I know I looked at Terry and told him I was sorry that he was never going to know what it was like to have a normal baby.
I hadn’t seen my baby boy except for the few minutes after his birth. The nurses helped me out of bed and into a wheelchair so that I could go down to the NICU to see DJ before the transport team came to take him to The Children’s Hospital CICU (Cardiac Intensive Care Unit). I couldn’t believe how perfect he still looked even knowing what was wrong. I ran my fingers over his perfect little chest, baffled by the fact that they were going to have to mar this perfection to save him. I asked my mom to ask one of the nurses if I could hold him. I don’t think they really wanted me to because he was under an oxygen hood but, I think the look on my mother’s face made them change their minds about saying no. He felt so small and so warm. It was in that moment that he was named. Delvin was my grandfather and James was Terry’s, both lost to us within a year of each other, both fighters. I was afraid of losing my little boy also. I sat there with him till I physically couldn’t but, I just couldn’t leave him but had to.
We were told that the transport team would be there at 8:00 to take him and that Terry had to follow him to fill out paperwork and get him checked in at Children’s. They had started him on prostaglandins to keep his duct (“ductus arteriosus“) open as that was the only way he was getting oxygen to his body. The down fall to the medication was apnea, so they intubated him for the trip. They brought him down to my room before they left. He looked so small on that stretcher in the incubator. All the machines, the beeping, the looks on their faces as they took him … it was too much and I started crying. Terry left with them and I made him promise to come back and tell me if he was alright. At that moment a phone call wouldn’t do I had to see his face.
The next morning there was nothing I could do to keep my mind off of DJ. I had told Terry to go to work so he could keep the time off he had for surgery day and for when DJ would come home. I knew I was going to need help. One of my OBs came in and sat on my bed, he apologized for not seeing this in any of the ultrasounds. He explained that once he had heard what was going on and knew what to look for he saw it, barely. I didn’t blame him, I told him it was fine and that everything was going to be okay. I don’t know if I truly believed that or not but I think it was in that moment I put on my “brave face” and started making a few calls to friends and relatives. Mom came over after seeing DJ and told me she had talked to a few of the doctors and they wanted to have a meeting the next morning.
Try as I might they would not let me leave so I asked mom to go in my place with Terry. It was determined that DJ had 3 holes in his heart, 1 large and 1 small VSD and 1 small ASD, and the pulmonary valve had never opened. They were calling him a Blue Tet, I found out that was short for Tetralogy of Fallot with Pulmonary Atresia (ToF/PA). The surgeon, Dr. Francois Lacour-Gayet, was going out of town but would be back Sunday and wanted to do the surgery Monday morning. I was relieved to hear this because I would be there with him and my family instead of being trapped in my hospital room. Terry and my mom returned and told me “the plan” for the surgery. They were just going to put a shunt in so that his heart could get a little bigger so they could do a full repair. I got a call from one of the surgeons that would be helping, Dr. Goldberg, and he explained more to me what would be happening. I then tried to talk to Dr. Lacour-Gayet on the phone but his accent made it impossible. We all got a good laugh because of it; I would laugh later about it because I found out from the surgical nurse that he was as frustrated as I was. One even said “that didn’t go very well.”
Later that day I would get a phone call from Dr. Goldberg, after another look at DJ’s heart with an echo they wanted to do the full repair. They were fairly sure his heart was big enough since he was such a big boy, almost twice the size of an average cardiac baby. I think the blood must have drained from my face because my mom was at my side in a heartbeat; she wanted to know what was going on. So I asked if he would be willing to explain it to her so I didn’t mess it up, which he did. So it was decided that they were going to do a full repair on his little heart and if all went well we wouldn’t have to do another surgery for at least a few years. This was good news, finally. Even better news, I could leave the hospital if I wanted. With a lot of convincing from my mother, grandmother and Terry I stayed one more night. I missed Harrison, I felt bad for leaving him so long, not that he noticed his Aunt Erin and Uncle Sean were keeping him busy. I missed my house and my bed and real food but, I knew staying was best for my health and I needed to be strong for the next few days to come.
My Surprise that night, Terry brought Harrison out to see me. They brought a DVD player and some movies with them. We had dinner, watched Monsters Inc., and had popsicles. We tried to explain to him a little what was going on with his little brother. He told us that everything was going to be fine; I kissed them good night and sent them on their way. I only wish I could have been that positive.
Saturday afternoon I was released. I had both of my OB-GYN’s come in and warned me about driving and walking too much and making myself too tired, both knowing very well that I was going to be stressing and not caring about my pain and comfort. With one stop to pick up my prescription for pain killers, I made Terry take me to Children’s. I wanted to see my baby boy that I hadn’t seen since they took him away the day he was born. It was my first time to the new Children’s Hospital. It was beautiful. Terry had told me that it really didn’t have that hospital feeling until you got into the rooms. Man, it was true. We had Harrison with us and had to get approval to have him come into the CICU ward. The head nurse was going to fight with us till the geneticists wanted to talk to both my husband and I. I wasn’t about to leave my 6 year old out in the halls by himself. It was the first time Harrison saw his little brother. I remember he dragged a chair over to his warmer and just stared at him. How scary that had to be for him. Here’s this little person who you’ve been waiting for and he’s hooked up to all of these monitors.
The geneticists (who name I cannot remember) wanted to do a FISH test. He thought maybe his heart defects were due to a genetic anomaly, maybe Goldenhar Syndrome or DiGeorge Syndrome. Neither of which either of us had ever heard of. He said they didn’t like labeling kids but it was something to look into because of other things that went with some syndromes. He then stated that he thought it would be Goldenhar’s just because Terry had some of the traits, an unevenness in the face. I know I stared at Terry until it probably made him nervous trying to see it. I did a little but nothing like he was describing. We told him he could run his tests.
Another doctor came to us shortly after the geneticists left. He introduced himself as Dr. Goldberg, a face to the name. He had seen us and wanted to meet me and see if I had any questions yet. He also wanted to know if we could come in the next day to go over “the plan” and sign some papers. You know those silly surveys that go around that have the question “If you could have any super power what would it be?” Well right then in that moment I wanted the power to read his thoughts. I wanted to know what he was thinking as he looked at my little family. Was he thinking “poor people, this is going to be hard” or “Don’t worry, we’ll fix DJ right up for ya” I wanted to know. We said our good nights to DJ and took Harrison home.
Going home, one would think it would be a joyous occasion. I felt empty, lost, confused. I was missing a vital part of my family. It’s the hardest thing I’ve ever done, leaving my kids at the hospital. I needed to eat and get some sleep so that I could feel normal again and be able to follow the conversations to come. I think the only reason I slept that night was because of the pain killers. I ran so many different scenarios for Mondays surgery in my head I was dizzy. Sunday morning came and we dropped Harrison with my mom and made our way to the hospital to talk to Dr. Goldberg. I was anxious to see how DJ had done that night.
We met Dr. Goldberg that morning in the CICU where DJ was. He sat us down and began to explain “the plan” to us. They were going to try to patch the two VSDs and the one ASD and try to use a third of a bovine valve to open up the pulmonary valve. Only a third, because they hope the other parts that were still “human” would compensate and grow with him a little longer then the full bovine valve being inserted. If it came to it they would just use the full valve. Yet I think the worst and scariest part for me was the bypass machine. What if his heart wouldn’t start back up? There were tons of waivers and consent forms to sign. At one point I found myself thinking this was worse than trying to buy a car.
We went back to moms to spend some time with Harrison. We weren’t sure what was going to happen in the next twenty-four hours and I wanted to be close to all of my support. Harrison was going to spend the night there because we had to be at the hospital at 6:30 in the morning if we want to spend any time with DJ.
Again I found myself holding DJ until I couldn’t, but this time it was because they were taking him into surgery. We were told the first night is the worst and that we probably wanted to stay at the hospital, so I went and got us a room for the night. After we found our room and put some of our stuff down we went out into the waiting area where, over the next few hours we were joined by family and friends. Ester, the OR nurse, would come out and update us when anything critical happened. We knew when the central lines were in, when he went onto bypass, when they were piecing his heart together, and when his heart was beating again because he was off bypass. I think when I heard that is when I started to feel calmer about everything. DJ was in surgery for 6 hours but they were able to do the full repair. We were told that they weren’t able to close his chest because of the pressure it put on the heart and that he was bloated from the bypass machine so they put a gortex patch over the opening and would close him up later. Both holes in the lower chambers (VSD) had been repaired, the top hole (ASD) they had left open a bit, kind of like a pressure valve, and they had been able to open the valve and only use a third of the bovine patch, all exactly what they had wanted to do.
Mom was with me when I got to go back and see DJ for the first time after surgery, I wanted her to be able to see him and she had to leave to help with Harrison back at her house. One of the nurses made sure he was covered up before we made it to his bed. There were so many tubes and wires and machines, it made him look so small. They had given him a paralytic so he didn’t pull at his tubes and IV lines. The nurse asked if I wanted to see everything, I nodded and then held my breath. I thought I was prepared but, I wasn’t. She pulled the blanket back and I just sobbed. Thank God my mom was with me, she got me calmed down and over that initial shock (defiantly one of those ‘I want my mommy’ moments) and we started asking questions. I found out what all the tubes were, where all the wires were going, and to watch his tiny heart beat through the patch was amazing. Here was the cause of all our problems beating away under a thin layer of plastic, and I could watch as I had once before on the ultrasound screen. What a miracle and hardship one little heart could be.
Terry came in after mom left, I wasn’t sure if he wanted to see everything so I covered him back up. When he came up to the bed he said he did want to see so I tried to explain everything to him but the nurse had to help. I think we were all waiting for Terry to crack but he never did. I was surprised. The following are Terry’s thoughts in his own words.
As I was about to walk back to see DJ after his surgery I took a moment as I washed my hands, a required task for the CICU that we were getting all to use to, I prepared myself for seeing something that no parent should ever have to see. When I first saw him, I was relieved it, the surgery, was over. I was also surprised that he did not look as bad as I had imagined. Don’t get me wrong, it was bad, but just not as bad as I thought it would be. He laid there sleeping, and looked to be under very little distress. His breast was split down the middle and spread about four inches, with a piece of thin gortex stitched into his flesh. You could see his heart beating and lungs filling. I remember thinking how crazy the first person must have been to look at a heart that small and say, “Hey, I could fix that!”, and how grateful I was for them trying. It was like the calm after the storm. Things were going to be ok, or at least that is what I was going to keep saying. Now we just had to wait for the normal to start and get to know him. Only five days old, and he has been thought so much.
Later everyone asked me why I never cracked. I told them I had to keep thinking, they know what the problem is and they have a plain to fix it. It was the only thing that kept me claim. If they would have said we don’t know what is wrong or we don’t know how to fix it, I would have lost it. Kind of cold, maybe, but I had more than just me to worry about; I had a whole family to be there for.
That night we stayed in one of the parent rooms. I got up a few times and went to go check on DJ. I know they would have called us if anything bad was happening but I still had to go see him. He was having arrhythmias (irregular heartbeats) all night long but, they had expected that. Terry went to work the next day and I stayed to watch over my baby. My aunt came to visit later that day and I went home with her to be with the other half of my family.
Every morning my mom would pick me up, help me get Harrison to school and take me out to the hospital since I had again, told Terry to go back to work. Every day he seemed a little better. We had visitors a few days but I mostly told people to wait till he was home. I didn’t want people to see him like that. It seemed like there was another tube gone or another drug missing every morning we came in to see him. Thursday they were finally able to close his chest, Friday the chest tubes in his lungs came out, Saturday the lead wires that went into his heart came out (in case they needed to shock him back into rhythm, which they never did), Sunday the chest tube in the pericardium came out. The biggest hurdle left was to get the breathing tube out and get him breathing on his own again. That came on Monday and I finally got to hold that little bugger again. A whole week had gone by without him in my arms. Next steps get him off a lot of medication and get him to eat.
He was getting better color every day, but he really didn’t want to eat. We tried bottles and nursing. He didn’t want either so they had to put a feeding tube up his nose, he didn’t like that. Things were going great. Then the day before Halloween we were told that we were going to be able to take him home, my own little treat. We watched all the videos, had him tested in the car seat, I had the cutest little pumpkin outfit all picked out. I was ecstatic.
Halloween morning we went to school with Harrison to see his parade and party. I was walking on air. Then my phone rang, sometime during the night DJ had gone tachycardic (a high heart rate that won’t come down), they couldn’t let him come home till they knew why this had happened or it went away. I had to excuse myself to the nurse’s office at the school so I could just cry in peace. I’m sure I scared a few people. We made our way out to the hospital anyway. They transferred DJ to the ninth floor CPCU (Cardiac Progressive Care Unit) where we just waited. I felt extremely frustrated at this point. They had taken him off the oxygen in the CICU and told me that as long as his O2 levels stayed above 87 they weren’t going to worry about it (because of the small ASD they had left). The first thing they did when they got him in his room on the ninth floor was put him back on oxygen but no one could answer me if that was the cause of the high heart rate. I thought I was going to pull my hair out trying to get answers. I had been spoiled in CICU where we had a nurse around all the time and I could get my questions answered right away.
The doctors and nurses were still concerned that he wouldn’t eat. He would just play with the bottle for a while and that was it, the rest would go into the feeding tube. He had a certain goal he had to eat before he could come home. He also wasn’t gaining weight so they fortified what they gave him.
November 3rd, what a wonderful day. We finally got the okay to go home. DJ was being discharged! We would go home with Lasix, oxygen and the feeding tube so I got the lesson on how to change and place it. I felt bad sticking that thing up his nose but if it meant we were going home, I would do it. We packed up and got out of there as fast as we could. I kept looking over my shoulder waiting for someone to come running after us saying they made a mistake and we had to come back.
When we walked into my mom house to pick up Harrison we were “attacked” by my little sister (14), it was the first time she had seen DJ. She wanted to hold him so bad and she was so happy to finally meet him. My brother (also 14) would only touch him with one finger. It was funny to watch. We gathered our boys and went home as a whole family for the first time.
We had a small fight with an infection in his incision but other than that there haven’t been any complications. My Christmas present was a mostly normal baby, we were off all medications, he was sleeping though the night, and there was no more oxygen or feeding tube. It was the best thing I could have asked for.
Today I sit and watch my now 5 year old boy run and play and I’m thankful for every day. His cardiology appointment is coming up at the end of the week, he will have his usual EKG and Echo done and then for the first time we will sit with the doctor and discuss a cardiac MRI and a Holter Monitor for 24-48 hours. I live to hear his laugh and love every smile I get. So we are still laughing through our journey and learning new things every day!”
Wouldn’t you agree that this dude is a true superhero? And it’s always a show of bravery for any parent to go through such a rough time and be able to share their story. Jenifer, thank you for that! As we know in the CHD world, stories never end, they always get bigger. I love this family for numerous reasons. Both of our warriors are the same age! We also live in the glorious state of Colorado. Aaaaand we are very familiar with Children’s Hospital here in Colorado. But most of all, this family enjoys the time they have together and it shows! It’s impossible to not feel inspired by this family and what they’ve gone through.
Keep on rockin’ DJ!