‘You aren’t leaving without delivering.’ I sat in disbelief. After 7 days of life, they cut into his side.’: Woman gives birth to baby with CHD, ‘We are blown away by his strength’

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“I always knew I wanted to be a mom. When you dream about having kids with someone, you don’t think about the possibility everything won’t go as planned. You don’t consider tough hurdles as you dream about their personality or hair color. Kyle and I were fortunate enough to get pregnant easily. My first pregnancy seemed almost uneventful, just dreaming about the future while brainstorming nursery paint colors and baby names.

We had our baby shower on a cold and snowy January Saturday, on the east side of the state, and then drove back with a truck full of gifts. We were feeling blessed living in a 2-bedroom condo in Grand Rapids while building our dream house. The following Monday and Tuesday, I went to work and then to my 34-week check-up. I saw my doctor and everything was great. Tuesday night, I woke up in the middle of the night with a bizarre horizontal pain at the top of my belly. I thought it was heartburn, although I hadn’t had heartburn my entire pregnancy so I took some Tums and tried to go back to sleep. I could still feel the baby kicking and moving so I knew they were okay. I had just been to the doctor but something didn’t feel right. Wednesday morning, I got up and got ready but called my doctor on my drive into work just to tell them what was going on. I was sitting at work when the doctor called back and asked me to go to the hospital, just to be safe, and get checked out even though she had just seen me the day before. I called Kyle, picked him up on the way, and drove us to the hospital.

Courtesy of Megan Siegert

Once we got to triage, they determined I had developed severe pre-eclampsia overnight. Severe pre-eclampsia is a condition where your blood pressure rises to an unhealthy level and there is protein in your urine because your kidneys and liver are not functioning properly. Your body is basically starting to get sick from the placenta and the only cure is to deliver the baby. It still hadn’t sunk in yet so we assumed I would be sent home and closely monitored. I remember so vividly the nurse stopping in her tracks to say, ‘Oh no, you aren’t leaving the hospital without delivering this baby.’ Shocked, with no hospital bags packed and a lot of work still to be done on our house, it started to sink in. We were delivering our baby 6 weeks early.

Our baby wasn’t very big yet. He or she had been measuring small throughout my entire pregnancy. Their lungs weren’t fully developed, and the doctors were telling us they would most likely stay in the NICU for a while. Kyle and I sat bewildered at how quickly things had escalated.

They transferred me to a delivery floor, gave me a steroid shot to help strengthen the baby’s lungs, and started me on magnesium to regulate my blood pressure and give us a little more time. By Thursday morning, they began inducing me with Pitocin. I felt flu-like from the magnesium but was determined to avoid a cesarean if my body would allow it. I started dilating, they broke my water, and I started progressing even faster. Around 5 p.m. they called my doctor into the room and I began pushing. At 7:10 p.m., I gave birth to the sweetest 3-pound 15 ounces baby girl, Lennon Jane.

Courtesy of Megan Siegert

When you give birth to a NICU baby, there are NICU doctors in the room to assess the baby as soon as they arrive. Basically, there are a lot of people in the room and they take your baby immediately. I hadn’t had a chance to even think about my birth plan but I knew this wasn’t it. They hooked Lennon up to a CPAP machine to help with her breathing and then wrapped her up and gave her to me so I could see her briefly before heading to the NICU. She was finally here, the little girl I had waited my whole life for, and I could barely see her tiny face underneath the nasal tube. Delivering a baby is an indescribable experience and suddenly this little human, my little human, was already being taken away from me. She had spent 34 weeks in my belly and was now across the hospital in an area, 2 days ago, I didn’t even know existed.

Courtesy of Megan Siegert

The NICU is a cruel, taxing experience and not how anyone imagines spending their newborn’s first days. I always say it’s a club I’m a part of and never asked to join. It’s your first experience of parent guilt, blaming yourself for putting your child in this mess. In the first few days, I couldn’t get my blood pressure down low enough to be discharged. Kyle spent his time wheeling me back and forth between Lennon and my hospital room, as I had to return every hour to have my blood pressure taken but was too weak to walk back and forth. Once discharged, I felt out-of-body. There’s the obvious ‘your baby doesn’t get to come home with you’ emotions but with the NICU, it’s the everyday strain that wears you down. You’re recovering from childbirth while walking the far distance from the parking garage to your baby multiple times a day, changing your (diaper-like) pad in a public hospital bathroom, setting alarms to pump in the middle of the night wishing it was your baby waking you instead, feeling like you have to shower and look somewhat put together because you can’t wear the same sweatpants in public for the third day in a row. Every day you wonder how much longer you can handle this and every day you just. Keep. Going. You’re constantly surrounded by other families just hoping and praying their baby starts to hit milestones so you see a glimmer of hope and get to finally take them home. So much pressure on a tiny human that doesn’t even know they’re not home.

Even still, we left grateful. Over the 20 days Lennon spent there, I transitioned from feeling sorry for myself that I didn’t get the ‘normal’ delivery I thought I deserved, to feeling grateful. Don’t get me wrong, I cried daily and still could cry about it randomly while rocking her to sleep 2 years later. Those 20 days were the hardest, most trying thing I had ever done but it forever changed me. Not just as a mother but as a person, learning to advocate for my child and myself, appreciate the little things, and not take a single thing for granted.

Once you become a mother, all your priorities shift. I no longer wanted to settle in any aspect of my life. I decided to take a pay-cut and get back into architectural design, my original passion. I wanted to find a job that was worth leaving my baby for. I wanted to make her proud.

Growing up, I dealt with severe anxiety. I never stayed at friends’ houses overnight or wanted to go away to camp. I had an almost crippling fear of the unknown. My parents handled it so well it never held me back from experiences but our NICU journey undoubtedly brought on severe anxiety regarding another pregnancy. Determined to not let my issues hold us back from giving Lennon a sibling, we decided to start trying for a second baby. We were blessed to get pregnant right away and spent the holidays sharing the exciting news with our families, as I quietly dealt with the immediate anxiety of my pre-eclampsia returning. The following February, during our routine ultrasound, we learned our baby may have a congenital heart defect (CHD) and we needed to see a specialist to verify.

Courtesy of Megan Siegert

I’ll never forget the room we were in, as a doctor drew a picture of a heart to help illustrate exactly what was happening. A large ventricular septal defect (VSD) and coarctation of the aorta, which meant our baby would require open-heart surgery within its first week of life. He explained CHDs are common. 1 in every 100 babies is born with a CHD and there are 360 different types. He went through our family histories, suggesting genetic testing to draw any conclusions, and I just sat there in disbelief. We would, once again, have a NICU baby.

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I remember my pregnancy as before our diagnosis and after. We were so blissful and excited before we knew and after the diagnosis, I was stopped dead in my tracks. In the months to follow, I would sink into dark thoughts over what was to come and Kyle would continually pull me back to light. One week at a time. One appointment at a time. We prepared as best we could for what was ahead, trudging our way through the fog.

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It was so important for my pre-e not to return so our baby could stay in as long as possible, allowing them to be as strong as possible for open-heart surgery. I had five doctor appointments a week while juggling working full-time and a toddler at home. We did everything we could to keep a close eye on things but even with a scheduled induction date, our son Jack came suddenly. I was sent to triage after tripping only to discover my pre-eclampsia was back at 37 weeks 5 days. Our doctors determined it was best to induce me before my symptoms became severe and life-threatening, as they had with my first. Jack Lawrence was born at 5 pounds, 8 ounces.

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I thought I knew numbness and fear with Lennon and then we learned of Jack’s CHD. Jack was one week old when he had his first open-heart surgery. 7 days of life, all spent in the NICU, and they cut into his left side to repair his coarctation from under his arm. It seemed surreal and I cannot imagine the pressure of being a pediatric surgeon. You end up walking your child down a hallway, kissing them, and watching an anesthesiologist carry them back to surgery. Leaving you to go and sit childless among strangers in a waiting room for hours. I’ve sat in a lot of waiting rooms but this one has an effect on me like no other. You have a pit in your stomach and the inability to catch your breath. Once the surgery is complete, you’re taken to a consult room where you meet with the surgeon to discuss the surgery outcome, although it’s several hours before you’re actually able to see your child again.

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We walked in to see our son hooked up to a ventilator, four IV lines, a urine catheter, among what seemed like millions of other wires. I felt so helpless and still find it hard to verbalize the emotions. For 20 weeks, we dreaded that day and we knew we would face another surgery in the near future. I would have cut off my own arm to prevent this from happening to him. I immediately returned back to the feeling of having failed my baby, a feeling I knew all too well.

Jack recovered remarkably well and was discharged just 1-week post-op. We brought home our sweetheart warrior and continued to heal, as we adjusted to being a family of four. We knew Jack needed a second open-heart surgery but held onto the fact he would only be stronger in the coming months to face it.

Courtesy of Megan Siegert

Surgery days are something you don’t get used to. A horrible night’s sleep followed by not being able to feed your child and having to attempt to soothe them for 2 hours while being seen by different nurses and doctors. I sunk into my all-too-familiar state of numbness. The inability to form thoughts or speak without tearing up when the receptionist asks you the patient’s name and whether or not they’ll need to stay overnight.

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Jack was 3 months old when he had his second open-heart surgery. When they opened him up to repair his VSD, they discovered they needed to do some unexpected work on his aorta. It was almost harder this time around. Jack had been home with us. His absence, while staying at the hospital, was more apparent than ever. I constantly felt torn between the hospital and being home with my 2-year-old who didn’t understand why mom wasn’t home to put her to bed every night. But we had reached the end of the tunnel. We were through his second surgery and it should be downhill from here. I kept telling myself we would never have to feel his absence at home again. We were blown away by Jack’s strength, as he recovered well and was discharged after 5 days.

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From there we all started to recover. It was hard on us all but we didn’t want that to be Jack’s life story. Just as things seemed to return to normal, during a routine cardiologist appointment, we learned Jack’s aorta was already starting to narrow again and his cardiologist advised it was best to perform a catheter operation. Feeling defeated, I struggled to remain positive. It became apparent whatever optimism I felt at the beginning was gone. I started to get angry and feel as if we may never be able to put this all behind us.

Courtesy of Megan Siegert

Another operation, another recovery required but this time less-invasive and Jack would be home after a day. I held onto the notion it was 24 hours and well, we had been through worse. However, while meeting with the surgeon post-op, in the consulting room, the unthinkable happened. We received the news Jack’s catheter operation was unsuccessful and he would require a third open-heart surgery in the near future. I don’t consider myself a medical professional, by any means, but by this time Kyle and I had gotten pretty good at educating ourselves with the possibilities of outcomes. Weighing the positives and negatives and doing our due diligence to make sure our son had the best possible care. The possibility this catheter operation would be unsuccessful didn’t even cross our minds. We were in shock. We sat, once again, in the waiting room trying to even comprehend what had just happened. There was nothing left to be said between Kyle and I. We were, once again, feeling defeated and unable to protect our 5-month-old child.

Courtesy of Megan Siegert

Jack had another open-heart surgery at 6 months old to remove and replace the patch that was originally placed on his aorta. His body was doing something his surgeon, one of the top-rated pediatric heart surgeons in the country, had only read about in textbooks. It had rejected the aorta patch originally placed.

Looking back now, ⁣our last year almost feels out-of-body. It’s hard to fathom I mustered up the strength to sit at a hospital in my postpartum state while my 1-week-old baby had his chest cut open and open-heart surgery performed on his 5-pound body. Then again, I somehow had the strength to take my 3-month-old baby back and hand him over to undergo another open-heart surgery, then again, at the age of 6 months. We don’t know what we’re capable of and while I’m still processing the year myself, I know Jack’s strength and perseverance are worth celebrating so I strive for gratitude.

Courtesy of Megan Siegert

We have always celebrated the anniversary of Lennon’s discharge from the hospital with a random act of kindness to the doctors and nurses of our hospital, Helen Devos Children’s Hospital. I don’t take for granted the phenomenal care our children received during their stays. These doctors and nurses work tirelessly at all hours of the day, on weekends and holidays, to make sure sweet little babes, like mine, are gently cared for and able to recover. They have seen parents in their worst emotional state and sometimes have to be the ones to deliver the bad news that puts them there. But I wanted to do more. In my healing, I dreamed of a simple shirt fundraiser to celebrate Jack’s first birthday. Nothing complicated, just a clear easy message we all could stand to practice daily. I doubted myself, not knowing if anyone would even participate but knew, for Jack’s sake, it was worth doing regardless. Boy, did they show up. We sold over 350 shirts, raising over $5,200 for CHD research. ‘Thank you’ seemed insufficient and the results were incredibly humbling and emotional for me. To the recipients, it was a cute shirt but to me, it was so much more. It proved to me even when our tank feels empty, there is always the ability to be empathetic  and love more.”

Courtesy of Megan Siegert

This story was submitted to Love What Matters by Megan Siegert from Grand Rapids, MI. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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