‘Are babies supposed to breathe that fast?’ I couldn’t shake the feeling something was terribly wrong.’: Mom shares newborn’s journey with congenital heart defect, ‘He’s THRIVING’

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“Our story begins with so much beauty. Liam was born on July 29, 2020. It was in the middle of the year that felt like nothing could go right, but he did. We chose to give birth in a birthing center, with certified midwives, nurses, and a doula to support me through my first natural birth. Liam is our fifth baby, but our third living child. I wanted his birth story to be full of calming power, and that is exactly how it went.

I started active labor around 7 p.m. the night of the 29th and gave birth to him at 10:57 p.m. Our midwife, Heather, did an incredible job checking on both of us and making sure we were both healthy and well enough to go home just a few hours later. We were able to settle in back at home, and the next morning, Liam met his two older siblings. Chantry and Jack were immediately in love with him! The following days were full of happiness as we all got used to our new normal with our newest baby.

Colleen Harvey Photography

At his 48-hour checkup, Liam looked perfect. He was gaining weight beautifully and had no signs or symptoms that anything was amiss. I had a strange feeling like everything had gone too well. I felt like I was holding my breath. I could not, for the life of me, figure out why. I chalked it up to simply being a mom who had lost her first child and miscarried her second, and so I thought it must just be me knowing how badly things can go. I moved on and ignored the feeling.

Courtesy of Hope Ezell

When Liam was 11 days old, my husband, Thomas, was holding Liam while I played with Chantry and Jack. He casually asked if it was normal for newborns to breathe so quickly. I stopped and started to watch Liam breathe. It looked strange, and fast. I took Liam into our bedroom and laid with him in our bed, trying to see if he would stop breathing so fast. I started trying to count how many breaths he was taking in 30 seconds, and could hardly keep up. I texted our midwife line to ask what was normal for newborns. ’40 to 60 breaths in a minute.’ He was doubling that. Jolene, the midwife on call, asked all the right questions, and I finally just sent a video of his breathing and how irregular it was. She immediately told us to head to the emergency room, this was not normal. She told me to show them exactly what I showed her and most likely, they would want to do a chest x-ray and probably some blood work to rule out an infection.

We got to the ER and I told the nurse checking us in exactly what I had told my midwife. ‘He’s breathing really fast. Over 60 breaths a minute.’ The nurse watched him for a second and said, ‘He looks like it has slowed some now. Let’s grab his vitals.’ They hooked him up to a heart rate monitor, and also put something on to read his oxygen on his foot. It took them a while to get a good reading on his oxygen, but they got it to read in a normal range, and left the room. A doctor came in soon after. ‘He is so cute! So, we are going to monitor his vitals for an hour, and if everything checks out there, we’ll send you guys home. No reason to stick him for blood if he’s looking this good.’ She left and came back an hour later, stating there was nothing wrong with anything they could see and we should head home.

Courtesy of Hope Ezell

It felt weird leaving. I couldn’t shake the feeling something was terribly wrong, but I tried to trust the doctors knew what to look for. It must be okay.

On Liam’s 14th day of life, we went to see Jolene. The second she saw him, she said something was wrong. She was most nervous about a blood infection, so she drew blood herself and sent it off to the lab. She also listened to his heart for minutes. Jolene said there was no murmur, but sometimes it sounded like there might be a periodic one. She asked me to get him into his pediatrician as soon as possible. I called as we left her office, and made an appointment for the next morning.

Courtesy of Hope Ezell

Throughout this, Liam’s breathing never dropped below 65 breaths a minute, and that was only when he was sleeping. On the day of his pediatric appointment, Liam also stopped eating well. He would breastfeed for a minute, and then have to stop to catch his breath. I could feel he was sick. I knew this wasn’t normal newborn behavior. I dropped Chantry and Jack off at a close friend’s house and headed to our appointment. Once there, they decided to do a normal 2-week checkup. I waited until the doctor was done looking him over, I thought he would notice the fast breathing during this process, but he never did.

‘He looks perfect! Do you have any other questions?’

‘Yes, I was wondering when the fast breathing would stop?’

‘Well, newborns breath pretty fast.’

‘Yes, I know. But he’s never dropping below 65 a minute and at fastest, it has been over 90 a minute.’ That sentence made him stop and watch Liam.

Courtesy of Hope Ezell

He immediately changed course. He realized how hard he was working. He decided to send us back to the ER at Children’s because that would be the quickest way to get an x-ray and ultrasound. He wanted them to look at his brain because it could be a brain bleed, and he wanted a chest x-ray to look at his heart and lungs. He called ahead to make this clear and make it so I didn’t have to re-explain myself, but when we got there, all of their computer systems and phones were down. I, again, had to explain my 15-day old son was breathing fast, and it was not normal.

Courtesy of Hope Ezell

At this point, Liam began to have apnea episodes. He stopped breathing for a few seconds at a time. This time, the doctor we saw ordered a chest x-ray as soon as we were back in a room. As soon as they had it, the doctor took a look and came in to tell me his heart looked slightly enlarged, but that could be due to the faultiness that comes with doing x-rays in the room on a less stable surface. They were going to do an echocardiogram to look at his heart. I held his arms down as the tech placed the ultrasound machine on his chest, and within a couple of minutes, she walked out, and back in, looked at his heart, and back out again. Two nurses came in and cheerily told me they were just going to start him on some oxygen and left again. Finally, the doctor came in and started to explain what they were seeing.

Courtesy of Hope Ezell

Liam had a coarctation of his aorta. This is when a piece of his aortic valve was pinched. He needed immediate help. Every baby is born with an extra valve within their heart called a PDA, it’s there to help blood move past the baby’s lungs while they are in utero, because they are unneeded. A normal baby’s PDA begins to close sometime between birth and 15 days of life. Liam’s was closed at this point, and because of the pinch in his aorta, he was unable to pump enough blood through his heart to the rest of his body. His heart was under major stress and needed immediate intervention to save his life. I texted Thomas, he needed to come now. I needed him to trade cars with me so he could go pick up Chantry and Jack and get them home. I also knew he would want to be with Liam for a few minutes, and be there when they laid out the full plan.

They called down a NICU doctor to place an IV line. Once that was placed, they immediately started a medication that would try and reopen his PDA valve to restabilize his heart. The downside to this medication was the fact it usually causes babies to stop breathing. They also needed to intubate him and get him on a machine that would help him breathe. Thomas got to the hospital just in time to be with me while they intubated Liam. There were so many people in the room, all there to make sure they were prepared for every outcome.

Courtesy of Hope Ezell

Once he was intubated, we were able to be with him for a few minutes, and then our original ER doctor came in and told us they would be life-flighting Liam to the Children’s Hospital in Aurora Colorado. They were one of the best that happened to also be close. I wasn’t able to fly with him because we were already at such a high altitude, they couldn’t take any extra weight. Thomas left to get the kids, and they had me sign him over to the life flight crew and told me to start driving. It would take me almost 2 hours to get there, it would only take them 20 minutes by air.

While driving, I called my mom. I told her every detail, going over all I knew helped me to process it. My mom and dad booked a flight as she was talking to me. They would come just to stay in the hotel across the street from the hospital. They wouldn’t be allowed inside due to the pandemic. But they would come. By a miracle, my in-laws had already been in the car on their way to us for the weekend to meet Liam. They were hours out when everything happened, and were able to show up, and watch Chantry and Jack so Thomas could drive up to Aurora. When I arrived at the hospital, they asked where I was headed, I didn’t know what to say and just said my son had just been life-flighted. A security guard came up to me, knew my name, and told me exactly how to get to the CICU. I checked in at the desk inside the CICU, and they sent me back to his room. There must have been 15 doctors and nurses in and outside of his room.

Courtesy of Hope Ezell

As I walked up, everyone fell away and I had a doctor approach me. He told me we had brought Liam in just in time. Any longer, even an hour, he probably wouldn’t have made it. He said Liam was still incredibly unstable, and they needed to get different meds to his heart. They needed to place a central line, and I couldn’t be there when they did. So, I said goodbye again and went to the waiting area.

Thomas arrived right before we went back to be with Liam again. At this point, a new doctor came and told us that since adding more medication, Liam had stabilized and was doing okay. He told us repeatedly Liam was critical, and we had only just made it in time. That first night in the hospital, we barely slept. Liam would move around and cry, but because of the tube down his throat, he couldn’t make a noise. It was heartbreaking, trying to comfort my tiny baby, but unable to pick him up, or hold him close. We could see how scared he was, and there was nothing we could do.

Courtesy of Hope Ezell

The next day, Liam was stable. They spent the day running labs to make sure he was strong enough for surgery. They did an ultrasound on his brain to make sure there were no bleeds, and they checked his kidneys and liver. Both came back with not perfect labs, but good enough and it was clear they were improving with the medication. The best-case scenario with the medication was it would reopen his PDA valve, but they did two echocardiograms, and both showed his PDA valve was not open, but his coarctation had somehow released a bit and was allowing real blood flow to the rest of his body.

Once all of those results came back, we were introduced to Liam’s surgeon, Dr. Mitchell. He was so kind and helped us understand exactly what was going on with Liam’s heart, and drew out and explained how he was going to fix it. He ordered 3D images to help figure out the best course for surgery and showed us exactly where he would cut out the coarctation.

Courtesy of Hope Ezell

He set the surgery for the 16th of August, a Sunday. And the countdown began. We were able to hold Liam just once before surgery. It took two nurses to get him into my arms, and he cried silently the whole time they were moving him, but the second he was in my arms, he calmed down. He fell asleep and seemed to actually rest for the first time in days. I held him for at least an hour, wishing I didn’t have to let him go again. I finally asked for them to put him back, and we spent that night praying everything would go well the next day.

The morning of August 16, they took Liam to surgery. They believed it would take at least 4 hours and could take as long as 12 hours. We walked to IHOP to meet my parents and wait. It felt weird being out of the hospital, I hadn’t left since the day I first got there. We talked about nothing for 2 hours. They had said they would try to update us hourly, but because it was the weekend, they might be too short-staffed to have someone get away and call us. They finally called right around the third hour and told us Liam was out of surgery! It was record time, and they said we could be with him in about an hour.

Courtesy of Hope Ezell

When we were about to walk back to see him, they kept trying to prepare us for what we were about to see. The wound on his chest was covered with a healing mesh, but you could clearly see the line that would forever mark this day on his body. The thing I wasn’t prepared for was the drainage tube. It was coming out of the center of his chest right below where his wound stopped. It was huge and scary and draining blood. I never even got a picture of it, but that image is burned into my mind.

Courtesy of Hope Ezell

From there, it was all about healing and supporting his healing. The craziest thing was how quickly that happened. They slowly weaned him off the breathing machine and took the tube out within 24 hours. He moved to the step-down unit within 48 hours after surgery. There, he faced eating issues due to a weakened vocal cord, but even that was obviously healing. Just 8 days post-surgery, we went home! I never knew how beautiful it would be to have my whole family under one roof, but I will never take it for granted again.

Courtesy of Hope Ezell

Liam has had multiple checkups since this journey began. He will see a cardiologist every 6 months for the foreseeable future. He’s currently 6 months old and THRIVING!

Sometimes I’m still in shock we experienced this situation. There is lingering fear, knowing Liam will forever have a cardiologist on his team. We aren’t guaranteed he won’t need more intervention as he grows, but as of now, he is a happy and healthy baby. I’ve never met a baby who smiles as much as he does, and I’m so thankful he’s here and making all of our lives better for it.”

Lindsey Bickert Photography

This story was submitted to Love What Matters by Hope Ezell of Colorado Springs, Colorado. You can follow their journey on  Instagram and their website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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