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GRAND RAPIDS, Mich (WOTV) – I remember the exact moment I knew something was terribly wrong with my baby. It was one of those moments that hangs suspended in the air, waiting for you to catch up to it, ready to bring your world crashing the moment you meet. All it took was one question from the doctor, “Is your daughter at home healthy?”
I knew it. I knew it right then. He was asking if my daughter at home was healthy because the daughter he was examining in my womb wasn’t, and he was about to tell me that.
Several weeks and many tests later, my husband, Evan, and I discovered the gravity of our baby’s condition. She was diagnosed with several severe and rare heart defects. Before that day, whenever I heard the words “heart defect,” I would immediately think of a hole in a heart and that was as far as my knowledge went. Having a baby with a hole in her heart was a frightening notion, but I have since learned that it is among the most common and easily repaired defects one can have. I had no idea how vast the world of Congenital Heart Defects (CHD) was until I was hurled into its orbit. While our daughter was, in fact, diagnosed with a large hole in her heart, that hole would turn out to be the least of her problems.
“Our heads were spinning. After the final round of diagnoses, I lay in our bed in the middle of the night, sobbing. I was absolutely unable to grasp what was happening.”
By the time I was twenty-five weeks pregnant, her diagnoses included: Ventricular Septal Defect (a hole between her ventricles), Transposition of Great Arteries (her pulmonary artery and aorta are flipped and have switched places), Atrial Situs Inversus (her artria are switched), Double Outlet Right Ventricle (both her pulmonary artery and her aorta filter into her right ventricle), Heterotaxy Syndrome (the syndrome that caused the tangling of her heart and often results in immune system issues), and Abdominal Situs Inversus (all of her organs below her heart are a mirror image). Doctors were perplexed by the complexity and uniqueness of her anatomy. Several highly respected medical professionals shared with us they had never seen a heart quite like hers. We were told she would need surgery, perhaps several, to get her heart to work as normally as possible. They would be open heart surgeries and they would be risky, but without them, she would not live.
Our heads were spinning. After the final round of diagnoses, I lay in our bed in the middle of the night, sobbing. I was absolutely unable to grasp what was happening. We had no family history of such issues, I was committed to healthy pregnancy practices, and an amniocentesis had ruled out any chromosomal disorder. Why was this happening?
A Very Different Pregnancy
Needless to say, the remainder of my pregnancy was far different than my first. The actual clinical experience changed, as she would have to be born an hour and a half away where surgeons were waiting, in case intervention was needed. I had to leave the comfort of my own OBGYN, whom I absolutely adore, for new, high risk doctors I had never met. As disappointing as losing the birth experience I had pictured was, it was nothing compared what else was taken from me—excitement. I was breathlessly awaiting the end of my first pregnancy, almost paralyzed with anticipation at the thought of meeting that precious baby. This time I was breathless and paralyzed because of something else—fear. I was so scared to meet this baby. When she came, that meant I was no longer pregnant, and if I was no longer pregnant, my body could no longer do the work for her. Her heart would have to work on its own. I wanted to stay pregnant forever. I wanted to protect her forever.
“As the nurse pulled her away from me, I tried to imprint the beauty of her face into my memory, but getting enough would have been impossible.”
Keeping her safe inside of me was never a possibility. That baby was going to come. And when she came, oh my, she was an absolute treasure. Sylvia Juliet entered our world on December 14th and forever changed it. The c-section took much longer than expected after some minor complications unrelated to her, so after almost three hours on the table, I was unbearably anxious to see her. A moment, maybe sixty seconds, was all I was afforded and the only touch I was allowed was a quick kiss on her cheek. As the nurse pulled her away from me, I tried to imprint the beauty of her face into my memory, but getting enough would have been impossible. They took her abruptly to the Pediatric Cardiac Intensive Care Unit where she would stay so they could monitor her heart, and with that, they took mine along with them. I was taken to my room to recover. For the first time in almost ten months, we were separated. I was no longer pregnant. I was no longer protecting her.
Knowing in advance this separation was coming, Evan and I had planned for him to stay with Sylvia. Not having my husband with me after such a major surgery that left me so physically and emotionally compromised with was not easy, but I needed him to be with her more than I ever needed him to be with me. My sweet sister was there in his place, doing her absolute best to keep me together. Needless to say, I got myself to her floor as soon as they would let me. I may or may not have fibbed a bit about how I was feeling in order to make it happen, but nothing was going to keep me from Sylvia longer than necessary. Eight hours later, she was finally in my arms, and so that day began the first of many we would spend there before we would get to bring our baby girl home.
A Long Stay
The beginning of Sylvia’s first stint in the cardiac ICU actually went well. Doctors seemed to think that after five to seven days of monitoring, we would be going home. She was born on a Monday and everyone seemed optimistic that we would be home by the end of the weekend. We were surprised, but thrilled. However, as time went on, her oxygen saturation kept decreasing which forced us into a grueling two week wait for her to regulate it on her own. I could write an entire book on just those two weeks, watching the monitors day and night, hearing their relentless beeping when her saturation dipped into the 60s, even 50s, spending half of Christmas Day in a hotel room so we could see our older daughter and the other half next to Sylvia, praying for the numbers to come up so we could go home. It was decided on December 28th, when she was two weeks old, that she needed a surgery to clear the stenosis (narrowing) in her Pulmonary Artery which was preventing adequate blood flow from getting to her lungs.
This is where I must express my appreciation for medical team who has and will continue to do amazing work to allow Sylvia the best possible quality and longevity of life. It was a no brainer that she would be treated at C.S. Mott Children’s Hospital at the University of Michigan. My husband is an alumnus of the university (Go Blue!), but it is also one of the highest ranked pediatric cardiac centers in the world. The surgeon whom we had met at one of our prenatal appointments was out of town for the holidays and her surgery couldn’t wait. We would have to trust her with someone we had never met. The stress of handing over our two-week-old baby for open heart surgery was hard enough; not having any rapport with the surgeon made the experience much more intimidating. Dr. Si would be the man to open our daughter’s chest, stop her heart, open it up, insert a foreign piece of plastic, and we didn’t even know him.
Knowing he was skillful and qualified was not even a question. We knew that he was because of where we were, he had to be, so wanting to meet him was not about discovering his resume. We just wanted know the man who was going to try and buy our daughter time until her next surgery. When we did, we were immediately put at ease. He was kind with a quiet confidence and as he spoke, his words seemed to fill us with the same confidence. The day of surgery was still one of the scariest days of our lives, but knowing he was on the other side of the doors was assuring.
I would regret having a public forum and not taking the opportunity to express my amazement and gratitude for my husband. There are so many reasons I married this man and my love and admiration for him has only grown over this process. He is the strongest person I have ever met and his commitment and dedication to “his girls” never ceases to rock me to my core. I am so blessed to know without a shadow of a doubt that there is not one thing he wouldn’t do for us, and I see that now more than ever.
The morning of the surgery was stressful and Evan was the glue that held me together. The OR was not ready in time and they were running very late. Dealing with the emotions of the day was enough, but we also were dealing with a baby who hadn’t been fed in hours. As the three of us sat in pre-op, Evan held and rocked Sylvia tightly. I could see the frustration written all over his face as he tried to keep her from crying because of hunger. He was a dad who wanted to protect his daughter from discomfort, but when they finally came for her, that look of frustration turned to reluctance, and he became a dad who wanted to protect his daughter from something so much bigger than hunger. When he placed our daughter into the hands of the anesthesiologist, I could see it physically pained him, and I was so thankful to him that he had been the one to do it.
“Our thirty-eight day stay in the hospital tested me. Not only was I watching my new daughter endure an enormous amount of stress on her body, but I was desperately missing our older daughter, Lilly.”
The waiting room was our home for the next four hours. We both eagerly and hesitantly awaited the updates from the nurse. I remember looking at Evan and saying, “If anyone needs to learn what real stress is, it’s this right here.” Every sense of my being hurt during that wait. I could feel the strain of worry pulsating through me, manifesting itself in the form of a terrible headache, intense fatigue, sore muscles, and, at times, tears.
We are so thankful the surgery ended in a success. Dr. Si, battling very unique anatomy, was able to place a modified shunt which now allows enough blood to flow to her lungs and has stopped her oxygen saturation from dropping. The surgery was over, and the recovery process had begun. It was a process that would take twenty-three days. Setbacks with her respiratory status, feeding issues, and electrolyte levels would delay our progress towards discharge several times.
Our thirty-eight day stay in the hospital tested me. Not only was I watching my new daughter endure an enormous amount of stress on her body, but I was desperately missing our older daughter, Lilly. I was living in a hospital with very little privacy and comfort. I spent many nights away from my husband after he had to go back to work. I was incredibly lonely but rarely ever alone. My sense of time and even awareness over normal things like the weather withered away. But finally the day came.
Adjusting to Home
You constantly question yourself asking, “Is this a heart thing or just a baby thing?”
All I wanted when I woke up each of those thirty-eight mornings in that hospital was to get my girl home. When I woke up on day thirty-nine of her life, in my own bed, with her sleeping in the bassinet next to me, I did not understand why the warm tingle of elation did not flood me from the inside out. Life those first few days home was almost more difficult than being in the hospital. Our older daughter, Lilly, who is not quite two yet, is one of the sweetest, smartest, most adaptable kids I’ve ever met. Her instincts are to love and nurture above all else. It is clear she was made to be Sylvia’s sister. No other child I have ever met could handle how very different life is now as gracefully as she has. With that said, going from one to two children is no joke. Going from one child to two children, with one having so many medical needs transcends any sense of difficulty I previously had. Sylvia did not do well at first. She rarely stopped crying and when you’re the parent of a cardiac baby, every cry can send you into a downward spiral of worry. You constantly question yourself asking, “Is this a heart thing or just a baby thing?”
It has taken me some time to learn her because, after all, she was thirty-eight days old when she came home, and for thirty-eight days she had a team of incredible doctors and nurses surrounding her. Now it is our turn to take care of her, and it is not easy. She needs scheduled medication four times a day and in between as needed. Every feeding takes about forty-five minutes as she takes some by mouth and some through a feeding tube. She can’t just “eat when she’s hungry” like most babies because some of her medication could dehydrate her if she does not eat enough. My days as a stay-at-home mom are spent in constant motion, but I am so thankful I am the one who gets to take care of her every day.
Our primary goal now is to get her big and strong for her next surgery, her big surgery, sometime between three and twelve months of age. It is called the Senning-Rastelli and it is an incredibly difficult and risky procedure. However, if successful, Sylvia’s prognosis is excellent. The procedure includes the use of a plastic conduit that she will need changed several times as she grows, so our lives will not be free from the stress of heart surgeries anytime soon. As traumatic as these surgeries and recoveries will be, we are so very thankful for them. The world of CHD repair has come so far and it is only in recent history that children like Sylvia would ever have a chance to live.
“Let me tell you something about motherhood. It is role that can make you completely whole while also breaking you into a million pieces.”
The Now Fight, The Forever Fight
As I anticipated life on the other side of Sylvia’s birthday, I sincerely doubted that I would have the capability to do all it takes to handle it. How could I be a mom to a little girl with a broken heart? It was going to hurt too much. How could I spend each day scared that it might be my last with her? How could I go to sleep, worried that I would wake to find her blue and unresponsive? How could I keep up with the doctors’ appointments, the feeding schedule, the medications, the insurance fights, the bills? How could I ever insert a feeding tube down her nose into her stomach? How could I tell people they couldn’t meet my child because it is winter and if she catches even the smallest cold, she will probably end up intubated?
Let me tell you something about motherhood. It is role that can make you completely whole while also breaking you into a million pieces. It is a role that has simultaneously given me so much purpose and direction while forcing me to realize how very little I actually know. It has made me confident and insecure, strong and weak, brave and terrified. So many people ask me how I am doing what I am doing. First and foremost, the strength that I do have is a direct result of prayer—prayers I pray myself, prayers from my family and friends, and prayers from an incredible community of supporters who have rallied around Sylvia. Secondarily, she is my daughter, so “doing what I’m doing” means that I am simply being her mom. Many women will back me up when I say that as a mom, you often just do, and you don’t even think twice about it.Life on the other side of Sylvia’s birthday hasn’t been easy. It will never be easy. However, it has become our normal. This is our life now. Most of the time I can do it without allowing fear to paralyze me like it did during my pregnancy.
Most of the time I can look at her and joy overcomes me instead of anguish. But then there are moments when I am weak. There are moments like the one I had today when one of my very best friends in the world brought us dinner and she had to meet my daughter for the first time through the glass of our front door because it is flu season and I can’t let visitors into my home. There are moments when I pack away my toddler’s eighteen month clothes and wonder if Sylvia will ever get to wear them. There are moments when my mind can’t help but go to a place so dark that I literally need to catch my breath and talk myself back into the light. It is a fight every single day, sometimes every single hour, to live in the moment and not in the trauma of the past or the anxiety of the future: the next appointment, the next test result, the next surgery. I have to fight to enjoy, to be thankful for the delight of now.
“I know this life is going to be difficult, but I also know it is going to be beautiful.”
CHD has taken so much from me as a mother: the excitement and joy at the end of my pregnancy, precious time to connect in the moments after her birth, hundreds of snuggles without wires and tubes inhibiting our closeness, photos of her beautiful face without the obstruction of a feeding tube, the opportunity to bond through breastfeeding, the first Christmas with two daughters, an entire month and a half of watching my toddler grow and learn more every day, and so much more. But I have come to realize something over the past few weeks. Those moments were significant, and as much as I will miss and mourn them, they were moments, and they would have fled just as quickly as they came. What I will not allow CHD to take from me is my tenacious commitment to provide the best care for my daughter, my passion to spread awareness, and my hope that the rest of my lifetime will be filled with millions of memories spent with Sylvia. That commitment, passion, and hope are not moments. They are not fleeting, and they will carry me so much farther than anything momentary ever could.
I never could have imagined we would end up in this place. No one ever does. My best advice for parents who have chronically ill children is to draw from their strength. They are so much stronger and more capable than our inhibited adult minds can grasp. To parents who have healthy children, I was you once. My threshold for “too difficult” and “too much” was much different than it is now, so I get it. I wish someone would have told me to please cherish every moment, even the frustrating times, because even those moments are ones so many parents wish they could have.
I know this life is going to be difficult, but I also know it is going to be beautiful. Sylvia Juliet, you are one of our truest blessings. We love you so much and we are going to help you fight this CHD war every step of the way. You may have been born with a broken heart, but you’ve got lots of hearts to break, and we can’t wait to watch you flourish. God bless you, sweet baby.