The Day I Became a Heart Mom

This post was originally posted last year in May for Owain’s 2nd birthday. It is the story of his birth and the moments following his diagnosis of having a Congenital Heart Defect. I have spent the past week working extra hard to raise awareness of CHDs and how common they are and I think the story of how all of this started is the most important part my passion.

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At 6:30am, 2 years ago today, I put my 13 hour old baby down to sleep. I had been up with him off and on all night long, trying to nurse him and hanging out with him. We were in a quiet little room. I was enjoying my first night with my Little Owee and I knew I only had one more night alone with him before heading home to the rest of the family. We were having our special bonding time and I was basking his newborn cuteness.

He didn’t nurse well, which was frustrating. He kept acting like he wanted to nurse, but then after a minute, he would fall asleep. I poked at him, nudged him, gave his little toes gentle pinches, pinched his nose, rubbed his head, rubbed cheeks, picked him up, undressed him, switched sides, played with him, changed his diaper, called his name, everything I could think of to keep him awake for long enough to nurse. He didn’t want to eat, he just kept falling asleep as soon as he started nursing. As long as I was poking at him, fussing with him and playing with him he was awake. We hung out, staring at each other many times that night. I would look down at him and he would smile at me, stick his tongue out at me and wrap his little hand around my finger. As long as I was looking at him and playing with him, he was smiling and playing.

I was amazed at how he smiled and played. He was overdue, I would say 2 weeks, my midwife would say about 1. I have never understood why there are some who say that newborns don’t smile. I have 5 kids who have all smiled at me before we ever left the hospital. But my Wee Nut was amazing, he had the biggest smile, over and over, and he kept sticking his tongue out at me.  And as long as I was smiling at him, he was smiling at me, and if I stuck my tongue out at him, he stuck it back out at me. I was in awe. He was so perfect and sweet. As long as we played he was awake, the moment I tried to nurse him, he fell asleep. I have since learned that this was a sign of things to come.

My husband’s great grandfather was Italian. His great grandfathers entire family was from Italy. After that there is no Italian, and I am fairly certain that there is no Italian in my family. When Owee was born, he seemed darker to me than my other children. He also had a full head of dark hair and dark brown eyes. All of my other three children before him, and his baby sister after him all had fair complexion and bald little heads. I remember asking anyone who was close to me, “Doesn’t he seem dark to you?” The nurses kept telling me that he was fine. They would turn the lights on him to prove it. They told me he was OK enough times for me to start thinking that he was going to have a recessed Italian gene, one that was going to give him the dark hair, beautiful eyes and a darker complexion like his father. But I still felt like something was not quite right. I still felt like something was wrong.

At 6:30am, 2 years ago today, I put my 13 hour old baby down to sleep. I had been up with him off and on all night long, trying to nurse him and hanging out with him. I was tired and decided it would be best for both of us to just give up and try to get some sleep. I changed him and leaned over to his crib beside my bed, laid him down, gave him a quick kiss with a smile and a nuzzle. Then I rolled over myself and fell fast asleep. I woke up an hour later when a pediatrician who was filling in for our regular pediatrician was standing by Owain’s crib. We had a few quick words and while he started his morning exam, I laid in bed trying to wake up.

I saw the look on his face change as he unwrapped my little boy. As he unwrapped him, I saw his little blue hand fall out of the blanket. It was so dark. Suddenly I was wide awake and the pediatrician was asking me how long Owain had been blue. “I don’t know. He wasn’t like that when I put him down. I put him down an hour ago and he was fine.” I was then told the reason for his blueness could be 1 of 2 things. The first could be that there was something going on with his lungs, like if there was fluid in his lungs and that they could suction it out. The second was if there was something wrong with his Heart. The pediatrician then asked if he could take Owain down to the nursery to find out what was going on. I said Of course, I will get dressed and be down to the nursery in a minute.

If it was my first baby, I probably would have run down to the nursery with them. I would have stood watching, in my pj’s, morning breath, doing the pee-pee dance. But I had already experienced similar situations with my 3 older children. All three of them had been rushed down to the nursery for trouble breathing. They all had some suctioning done and been given some oxygen and they had been fine. They all spent a few minutes in the nursery for observation and returned to my room with me. One of my children had so much junk in his lungs that the nurse scooped him up and ran down the hallway with him, I couldn’t even keep up with her. But in the end, he was fine. They were always fine. Always.

Why should I think that this time was going to be any different.

I started getting dressed, spend a few quick minutes in the bathroom, brushed my teeth, had a quick snack. While doing all of this I called my my husband to let him know there was something going on, Owain was blue, there was something going on, but I wasn’t really sure what it was. I was starting to get really worried, but I didn’t want to worry my husband too much, I didn’t want him freaking out and driving to the hospital frantically. But I wanted him with me NOW. My parents were at my house with my husband and the other kids and he was able to come right over to the hospital. It only took me a few minutes to get ready, as I was finishing up, the pediatrician came back into the room and gave me the news that changed our lives.

This sweet man who I had never met before, who was just filling in for our regular pediatrician came into our room and told me that it was not Owain’s lungs, that it was definitely his Heart. His oxygen levels were down to 40 percent when they took him to the nursery and got down to 38 percent before they got him stablized. The University of Virgina’s Children’s Hospital had already been notified and the NETS* van was already on its way. My little Owee was going to need Heart Surgery.

*Neonatal Emergency Transport Service

My husband still wasn’t there, I don’t think he had even left the house yet. I had only gotten off the phone with him a few minutes before that. I called him back and told him to get to the hospital NOW. I don’t remember if I was able to tell him what was going on over the phone, I think I cried. I was so confused. The whole floor was running around. Nurses were in and out of my room. One of my midwives was there, my door was opening and closing, nurses in the hallway, everyone was talking. There was so much going on. I went down to see him. They wouldn’t let me in the nursery. I had to look at him through the window, through all of the nurses. The NETS team was there, they made the half hour drive in a matter of minutes. My husband was finally there. There was so much information. Suddenly they were rushing to discharge me. We started calling family, trying to figure out what to do next.

The NETS team told us that after he was ready for transport, that we would have 10-15 minutes with him before they took him to UVa Children’s Hospital. While I was talking to the woman and signing papers, they got another call for another Heart baby down in Richmond. We got to see Owain for just a few minutes and then they took him away.

It was close to 12 hours later before I was able to see my Little Owee again.

After a whirlwind discharge, we stopped by the house. My parents were getting the kids ready, we all packed up for the day and headed to UVa. My husband was in the truck with my father, I was in the van behind him with my mother and the 3 older kids. I remember looking down at the speedometer and we were racing towards Charlottesville at close to 90 miles per hour. It took me only a second to realize that if we got pulled over, we would not only get delayed, but we would probably both get tickets. Thank goodness for cell phones! I really wanted to get to the hospital, but I didn’t want to add getting pulled over and tickets into the mix.

By the time we got to UVa, my mother in-law was already there. And there all were, sitting around in the NICU waiting room, with very little idea of what was going on and no idea when we were going to be able to see our newborn again. The day was a blur, doctors were in and out to the NICU waiting room, telling us about Owain Heart, how it was supposed to be, what it actually looked like, what they were doing to keep him alive, what needed to be done in the next couple of days.

By the time we got to see Owain again, it was late. We had already eaten 2 meals in the cafeteria, but aside from that, I really don’t remember much else. He looked terrible, he wasn’t blue any more, but he was covered from head to toe in tubes, monitors, IV’s, he was on a respirator, and way too many meds. We couldn’t even hold him, he was too agitated, in too much pain. I felt so helpless. There was nothing we could do. All I kept thinking was how bad I wanted to be back in our room at the other hospital, I wanted everything to be normal. But this was the first day of our New Normal, and it ended very different than it started.

We were now parents of a Heart Baby. We were now parents of a baby with the most common birth defect. Congenital Heart Defects affect 1 in 100 babies born. Of that 1 percent, the defect that Owain has is complex and rare, affecting about 3 percent of all babies with a CHD. Owain’s CHD is Double Inlet, Single Ventricle, with Pulmonary Atresia and Malpositioned Arteries.

Here is an image of a normal Heart. I found the image that I found on a site that no longer exists. The blue blood is used blood coming from the body, the oxygen has been used and it goes into the Heart’s right chambers and out to the lungs to get oxygen. Then from the lungs, the blood goes into the left chambers and out to the body.

This is the close image I have been able to find of a Single Ventricle Heart. With his Pulmonary Atresia and Malposed Arteries, the rest of his heart looks much different from this image. I got it from a website that also no longer exists.  When Owain was born, his blue blood went into his one ventricle, and right back out to the body without ever going to his lungs.