For most mothers the words, “You’re pregnant” set a course for high hopes, expectations, fulfilled dreams, anticipated anxiety for the unknown, sacrifice, preparation and happiness. The immediate focus is put on health, wellness and ensuring that the baby’s entry into the world is a safe one. Many of you can identify with the eager anticipation of purchasing your first baby magazine, deciding upon baby gear and envisioning your birth plan. However, there is a side to what we’re saturated with envisioning that aren’t exactly visible, discussed or readily available for us to prepare for. What if after the nine months is over, your focus is no longer which outfit you want your precious newborn to return home to and instead whether or not your previous newborn is going to make it home? With you?
When many of us hear about heart disease, we don’t typically think of newborns, anymore than when we hear those fateful words “You’re pregnant,” do we think about the possibility of something going wrong. No one dreams about delivering your baby only to find out that s/he isn’t healthy.
Meet Rebecca. She is a mother who courageously and graciously chose to share her truth in honor of the miraculous story that exemplifies the meaning of hope and her extraordinary will to fight against her son’s odds. Her story is not only one that every mother needs to read, but one that I know so many of us can sympathize with. It’s not just about the journey Noah took to arrive to where he is today, but it’s about the dreams of a mother who set out to ensure her vision of motherhood wasn’t compromised without a fight. Their story is one that speaks to how one minute can interrupt what so many of us take for granted.
When I first heard about Noah’s story, I was humbled by the innate responsibility us mothers feel indebted to carry even when the fate of our children are beyond our control. Not just because that is what us mothers envision for our children, but because we’re entrusted with the daunting responsibility of ensuring their arrival to us is a safe and healthy one. It became clear to me that Noah chose his mother wisely. Noah was about to set his entire family on a journey, but particularly his mother. He was about to teach her just how strong, capable, selfless, devoting and loving she really is. I am grateful Rebecca chose to share her story because I believe it is one that so many people will feel inspired by. Please join me in standing with Rebecca as she resurrects her truth in what it is like when the fairytale version may not be what we envision it to be, but of what it can be.
It was exactly one week after my beautiful baby shower. The nursery was crammed with new boxes and gift bags to be sorted through. I had tiny baby clothes to wash and baby gear that our handy, soon-to-be Daddy was prepared to put together. We were just five weeks away from our due date and parenthood was becoming real. We needed to get that nursery whipped into shape and the house prepared for the home birth we had been envisioning for months. I spent an entire morning washing and organizing those sweet baby clothes. I didn’t put too much thought into the back pain as I went up and down the basement stairs, until I finally surrendered myself to the couch to rest.
“I’m going to lie down on the couch for a minute. My back is hurting,” I told my husband as he was installing a fan in our bedroom that needed to be done prior to the anticipated home birth. As I lowered my 8 month pregnant self onto the couch, there was a twinge and then a gush. My water broke! Except it was 5 weeks before my due date and all I could think about was that it was too early! From that point forward we were thrust into what felt like a whirlwind of decisions surrounding how to proceed with the birth when I was still coming to grips with what was happening. It was decided that we would meet our midwife at the hospital and it was then that I realized our vision for a home birth was laid to rest.
Five hours and 12 minutes later, my midwife placed the tiniest, quietest little baby on my chest. There were no cries and it wasn’t long after he was placed on my chest that I was directed to keep the blankets over him. I remember the exact explanation.
“He doesn’t have an ounce of fat on him to keep him warm.” I was dizzy. Everything happened so fast and in an instant everything had changed. Nothing felt, looked or sounded familiar. There I was; yet I was supposed to be at home preparing for my home birth a month from then. Instead, there I was laying in a hospital bed with a 4lb, 6oz baby boy. The next five days were a blur of lactation consultants, nurses, pediatricians and discussions that included words I’ll never forget.
“Below normal birth weight,”
“Low blood glucose,”
When no professionals were left in our room, it was just the three of us. We spent hours feeding this tiny infant from a dropper who had no suck reflex that would allow him to take a bottle or breastfeed. I looked down at this baby and was awash with emotions. I knew that I would die if anything happened to him and yet, how could I not be pregnant anymore? How could this baby actually be mine?
A long five days passed before we were discharged from the hospital with appointments to follow-up with our pediatrician the next day and a pediatric cardiologist the following week. Noah had a heart murmur that the doctors confidently insisted was common in premature infants in what they refer to as a Patent Ductus Arteriorsus (PDA). Either it would close on its own or Noah would be given aspirin for it to close. Nothing too serious we thought, but we sought out to see the pediatric cardiologist just to be certain. My husband drove us home going no more than 30 miles per hour on the highway as I stared at this tiny 4lb baby in the car seat next to me. He was literally swallowed by the car seat and I said to my husband,
“You can’t go back to work and leave me alone with this tiny baby.”
We survived the weekend and on Monday morning, we put Noah into the comically large car seat and made the trip down to Albany for the cardiology appointment. After an echocardiogram, we sat in the doctor’s office waiting for the results. I was trying to swallow my own anxiety for what the tech was examining on the screen. So we sat in the office waiting for the results until the Doctor finally arrived.
“Multiple heart defects.”
I heard nothing after that. I sat through the rest of the appointment staring at this tiny baby in my arms and continued to stare at him in the gigantic car seat the entire way home. I couldn’t comprehend what was happening. I couldn’t cry. I could barely move. I was in a fog.
Was this really my baby? Could this tiny, perfect little creature actually have a life threatening heart defect? How was he going to survive this? How were we all going to survive this?
Over the course of the next few weeks we were at a doctor’s office on a weekly basis. Noah’s weight was under constant scrutiny. Not only had he been born prematurely and below normal birth weight, but he was going to have to undergo open heart surgery. In order to go through open heart surgery, it was imperative that Noah be as plump as possible. We were told the surgery would occur in the next six months so we were on strict orders to monitor his breathing, eating and his coloring for any warning signs about his oxygen. Thankfully my mother who is a pediatric nurse began researching and making calls immediately. She was insistent on ensuring the best possible care for Noah so she found a pediatric cardiologist at Mass General Hospital who worked closely with Boston Children’s Hospital. She got us an appointment immediately and before we knew it, we were on our way with our 3-week old baby for his very first road trip to Boston.
We anxiously waited to meet with the new doctor in Boston after what felt like hours of EKG’s and echocardiograms. There she was, but the news wasn’t what we were hoping for. Instead of multiple heart defects, Noah was diagnosed with Ventricular Septal Defect (a hole) that was an abnormal shape and therefore would not be able to close on its own. It was believed that Noah would need to undergo open heart surgery within his first year of life, but not multiple open heart surgeries as we were previously informed. We were advised to continue increasing his weight and monitor his oxygen. He was put on medication and would be monitored by the Albany Pediatric Cardiology group every other week and in Boston every other month until surgery became imminent.
We went home and I was exhausted. At just three weeks old, this tiny baby still could not latch and I was determined to breastfeed. It was the last vision I wanted to hold onto and I wouldn’t give up. I pumped every two hours, set alarms throughout the night and did everything I could to stick to any part of my original plan. Yet at 5 weeks old another part of my vision changed. Noah would wake up, refused to be put down, screamed inconsolably and began to choke on any bottles we fed him. We called the pediatrician and were rushed back for testing with threats of hospitalizations.
I was a wreck.
I didn’t want to spend another second in the hospital; let alone another overnight. We brought Noah to Albany Medical Center where he was strapped onto a machine to monitor his digestion. The doctor immediately identified a massive silent reflux which led us to see a pediatric gastroenterologist.
Another appointment and more medication.
Noah slowly grew. We met with a different doctor just about every week and I continued to pump until I was expected to return to work full-time just two weeks later. My vision changed again when I had to rearrange my leave time to accommodate a possible surgery. So there I was leaving my tiny, sick baby at just 9 weeks old who wasn’t even the size of most newborns at birth.
I was in a continual fog, exhausted and I was angry at everyone and everything. I was certain that Noah was going to die. He was going to die of SIDS and it wasn’t a matter of if, but when. I barely slept and resisted help because I didn’t want his death on anyone’s conscious. I grew angry at my husband when he slept on the rocking chair with Noah because that meant he wasn’t watching him every second and ensuring he was breathing. Everything was spinning out of control and as his mother; I couldn’t control any of it.
I was a mess. So I decided I needed to call my midwife. I am a social worker. How did I not identify the symptoms of Post-Partum Depression and Anxiety before this moment? How did I let this much time go by without realizing it? When I finally told my midwife that I needed help, her exact words were, “I was wondering how you appeared to be doing so well throughout all of this.” No one asked me the questions though. No one said anything to me. I gave birth and my health in the midst of my fog became secondary to what was happening.
To say that the first 6 months of Noah’s life was stressful is a serious understatement. He took awhile to sit, stand and didn’t walk until he was 18 months old. He cried and wouldn’t be put down and had to sleep on top of someone for the first year of his life (he still can’t sleep alone to this day). Despite it all, Noah continued to grow on his own little growth curve and made strides at his own pace. At his 1 year Cardiology appointment, the doctor found that Noah’s large heart defect shrank significantly. There was still a hole, but it was comparatively small. This was nothing of what anyone expected. The fog was replaced with hope.
There was a chance that Noah wouldn’t have to have open heart surgery at all. We remained cautiously optimistic though as he would have to be monitored for the narrowing chamber around his heart. At his 2-year appointment, we received what once seemed impossible even to the cardiologist.
Noah would not need open heart surgery. At Noah’s 4 year cardiology appointment in Boston, he was discharged. I cried and we celebrated.
Noah will be five years old on March 31st this year. When I look at him, it’s hard to catch a glimpse of that 4lb, tiny baby I brought home nearly five years ago. It took me months for the reality of having a healthy boy to set in. For the first few years of his life, I spent every morning waiting for the other shoe to drop. That shoe hasn’t dropped and Noah continues to grow and achieve amazing milestones at an extraordinary rate. It almost makes me wish that he were little again (almost). In spite of being born with a heart defect has more heart than any little boy I have ever met. He is the light of all of our lives. Noah brings more joy and love to our lives than we ever knew possible. Noah’s entry into the world certainly wasn’t what we envisioned, but his existence into our world is beyond measure.
The Children’s Heart Foundation is an American organization that funds research to advance diagnosis, treatment and prevention of congenital heart defects. For anyone interested in learning more about The Children’s Heart Foundation or making a donation, you can check out www.childrensheartfoundation.org
I have always believed that birthdays are a celebration of the journey two people took together. I want to wish an early Happy Birthday to the boy who miraculously proved that the size of one’s heart is by no means the measure of their will to provide love, hope and faith.
I also want to wish Rebecca a Happy Birthday. She is a mother who devoted her own heart to the growth of her son’s.
Join me in honoring Rebecca and letting her know you’re proud to stand resurrected in truth together.
In Love & Truth,