Why we chose to support this mission:
Spending a large amount of our days caring for babies who were born too early or babies who have birth defects, the Lehigh Valley Breastfeeding Center's staff and patients have decided to create our own team this year to show our love and support. We hope our efforts will give hope to those babies and their families who need it most. We have so many patients who could share stories of premature birth, NICU stays and true heartache. We selected a few to help those who have never experienced the life of a NICU mom to share their stories.
2018 Story of Prematurity
That could never happen to me..."
That's the thought that would always run through my head whenever my dad recalled the harrowing details of my mom's two pregnancies. She developed preeclampsia (back then better known as "toxemia") and had to deliver both my brother and me early via c-section in 1986 and 1983, respectively.
I couldn't help but wonder why he always shared that startling story with me. Why would a father share this stuff with his daughter? Didn't he realize it gave me something to fearfully obsess over if I decided to get pregnant some day? I can't seem to remember his response when I asked those questions, but I always can recall my dismissal of the story as a cautionary tale of then-unreached scientific advancement.
My brother and I had to be delivered early at around 30 weeks, weighing under 5 pounds. To look at us now, you never would know that. Casting it aside was easy when anyone could see we were safe and well now. Surely when I was old enough to want children, medical professionals would know what to do when your blood pressure gets erratic. A protocol would be in place by then - or so I thought.
By the time I decided to get pregnant, at age 33, I realized that the dangers of preeclampsia had to be taken seriously. I knew it was necessary to be proactive, since I already battled inherited hypertension from both sides of my family. With this in mind, I sought to be my own patient advocate and take an assertive, research-based approach to my pregnancy. I made sure to plan conception and get put on safe medication beforehand. We made visits to a genetic counselor to rule out any glaring genetic concerns, and a high-risk OB-GYN placed me on an aspirin regimen, which was known to help stave off preeclampsia. I wanted to take every precaution available.
Things went well for the first few months. I battled morning sickness but made sure to take my vitamins, go to every appointment and stick to a balanced diet. Our little one was active from the start. I'll never forget that first view in the ultrasound room - a little oblong formation fluttering its little flippers wildly. I sat in total awe at this creation and fell totally in love. I vowed to protect this little creature as it grew more and more into a person each day.
My husband Jeff and I fawned over the weekly growth updates on my phone's fetal development app. We began to caress my stomach and congratulate our little “Acorn” on his progress. By then we knew the sex - a little boy - and knew that he was growing fingernails. All the while, he kicked and twitched and twirled about in my belly. Our dreams for the future were blooming and blossoming above our heads.
Then the pain came.
At first, I barely noticed it among my other symptoms. It was a slight, dull ache just under my breasts, against my rib cage. I was 22 weeks at the time and just into the second trimester, which is the point when an influx of progesterone is known to slow digestion and cause gas pains. Severe indigestion, I figured. I never was the hypochondriac type.
By this point, I was still vomiting daily and was exhausted from standing on my feet all day at work as a veterinary assistant. But this pain slowly creeped to the forefront of my awareness. It persisted through my dense, dark sleep and into the next day. I sought out ways to break up the bubbly pressure. I tried jogging, drinking extra water and taking a handful of Tums. I did yoga poses specifically known to ease digestive upset, but nothing would stop this pain.
Tuesday came along and I had the day off from work. I decided to make a last-minute appointment to see the OB-GYN. I needed to hear reassurance that this was normal. Jeff drove, and we were probably in the office for two whole minutes. The technician took my blood pressure twice before rushing off to grab the doctor. The doctor arrived promptly and calmly informed us that we had to go to the hospital right away.
My blood pressure reading was 176/125. We were understandably upset. I figured the ER doctors were going to switch up my meds and give me some fluids and send me home. I had a creeping worry that they might make me stay in the hospital overnight. When I look back, neither of us really knew what to expect. All I had ever known for reference were the stories of my mom's preeclampsia. It sounds so cliche, but from this moment on, we would never be the same again.
Things happened very quickly after I entered triage. Jeff went to park the car and came into the tiny room to find twenty individuals all clad in scrubs racing around as I laid in a gurney. One was reading my health history out loud from a computer screen. A second one was inserting an IV into my arm. A third was doing an emergency ultrasound, while another was trying to get me to sign documents. The male nurse asked me if I would want them to resuscitate the baby, should they need to do an emergency Cesarean section.
I heard someone ask Jeff the one question that was asked of my dad all those years ago. If it comes down to it, they wanted to know whether to focus their efforts on saving me or the baby. There was shouting and a flurry of hands. Someone gave me an injection through the freshly-inserted IV. It made a sensation of heat race through my body. I felt my limbs radiate as my mind went fuzzy.
Suddenly I was wheeled off to another room. It was the kind that can accommodate a more permanent stay. At some point, someone changed me from my clothes into a hospital gown. My mind felt dizzy as my body was sweating. Little Acorn was still squirming within me, just as he always had done.
Then I was told of the damning news. I tried to focus through the mental fog from the injection they had given me. Preeclampsia had reared its head already. I was only 24 weeks at the time. How could this be happening? I did everything I was supposed to do. Okay, I thought. Little Acorn seems to still be doing well, they said. Some good news.
“As long as I'm getting shots of magnesium sulfate in my veins, that will keep me from having a heart attack or stroke,” I thought. “So if little Acorn is showing no signs that he's unhappy, I can remain here and grow him like a human incubator.”
Fair enough. I had accepted long ago that I would never have a full-term baby or deliver vaginally. I already had come to terms that this was the price I had to pay. It was the cost of the genetic gamble of bringing a new life into the world. I had decided whole-heartedly to put my faith in the progression of medical science. Little did I know that my body would betray us and force my premature baby from my womb only two days later.
Never would I have imagined that modern science could fail so miserably.
The doctors and nurses frantically attempted to control my ever-fluctuating blood pressure. There was a deep sadness I noticed in every pair of eyes. Even the humanity of the staff could not compensate for the lack of knowledge we have about preeclampsia as a society. The meager medications that professionals are equipped with do little to slow down that bullet train once it's set into motion. It quickly worsens until the placenta is delivered, and no other cure is known.
I did go on to see my baby, and hold him, and love him in a way that only a mother can. I was able to look at and touch those beautiful, twitching feet that I had before felt only from the inside. I got to change his diaper, and sing him songs and read him books.
I even got to see him open his beautiful blue eyes on Father’s Day. I got to take in his intoxicating scent and notice how blond his eyebrows were and that he had my nose. My husband and I got to name him and spend some peaceful time together as a family.
But we did not get to take him home.
He did not get to see his first birthday, which he shares with his Grandma. Or learn that his middle name is the same as his Grandpa's. He did not get to meet his doggy sister, or take his first step, or learn to ride a bike.
Avery's onesie sits in a dark closet right now because he died on my 34th birthday, after nineteen days with us. He was born perfectly formed at 13 ounces, but his organs were not ready to function on their own. His undeveloped kidneys stopped working and went into renal failure.
A side effect of preeclampsia is intrauterine growth restriction (IUGR). Avery's growth stopped around 22 weeks, when I started to feel those epigastric pains that landed me in the hospital. It's possible that he could've survived if he had been a true 24-weeker in terms of growth, but we never will know that for sure.
What we do know now is that our arms are empty. His remains rest in a little blue urn surrounded by pictures, dried flowers and little statues of angels and birds. We did everything we were supposed to do.
But now he's gone.
I thought my diligence would save us, and that medical science was advanced enough to give him more time. I never thought that this could happen to me. To us. To a middle-class couple in a first-world country. Now I never say "never." And because of that, I live my life more cautiously.
I realize that this was supposed to be a miraculous, uplifting story about beating the odds. But it's hard to beat the odds if the odds are stacked against you, like they were for Avery. As a parent of loss with nothing greater left to lose, only the truth will set you free.
Now I live my life in my son's honor. And now I want to increase those odds for other moms who are in need. Nothing will bring my sweet Acorn back to me, but if I can help even one mother through preeclampsia awareness, perhaps it can save an innocent baby's life. Through that I can find hope and meaning amongst my grief, in knowing that Avery did not die in vain.
The truth is that if it can happen to me, it can happen to anyone. Regardless of age, race, education or class. The next woman to face this could be your sister, your daughter-in-law, your wife.
I don't mean to suggest that we cower in fear, but that we must do the very oppposite and rise to tackle this crisis. We must denounce the current standards of care as unacceptable and demand more competence. One way to help is by supporting the people and organizations that can put change into motion.
Hospitals are full of passionate individuals who are caring and knowledgeable. But they can only go as far as their knowledge will take them. Donations are needed for research that can put better protocols into place. Only then can we hope for greater control in prevention, early detection and management of preeclampsia in all stages.
And then maybe one day there will be a way to greatly curtail or even cure its debilitating effects, so that we can give every baby the fighting chance they deserve. I can think of no greater cause, but this organization is more than just a nice cause to get behind. For the parents and grandparents and anyone affected by losing a baby, it means a little more. This is a chance to honor those we've lost and look to the future with potential and hope.
These words might sound flimsy and overplayed, but when I think of the worried mother pacing the NICU halls, I think of myself. When I think of the premature babies that are fighting for their lives, I can't help but think of my sweet baby boy. It's tragic to think that there are others going through these hardships at this very moment.
Stressed parents, who lie awake at night, fearing a phone call that their baby's condition is deteriorating. Babies who have arrived too early, who must get their nutrition through tubes and injections that protect their lungs. These are the memories that break my heart and fuel my quest to improve outcomes for families.
It's easy to say "not me" and "not now." But for a premature baby, one day can mean the difference between life and death. And so, if not right now, I ask you - when? Please don't wait until it happens to someone you love.
2017 Story of Prematurity
The week my sons were born was the worst week of my life, and the day they were born was the single worst day of my life. Please don’t get me wrong - these boys were wanted, prayed for and cried over as we struggled to conceive them. When my husband and I found out there were two, we vacillated between accusing the nurse of lying and telling her she was wrong. “There was only one egg. This is impossible.” She told us they were identical twins, and that moment is one neither of us ever will forget. We had ultrasounds every two weeks, and my Perinatologist and Ob-Gyn answered my 1,293 questions regarding the delivery of twins and the likelihood of a vaginal birth, which I desired. On September 14, 2016, when I was 25 weeks pregnant, I was feeling off and made an appointment for that afternoon with my OB. I apologized to her as I laid down for my transvaginal ultrasound, telling her I felt like a first-time mom overreacting. We immediately could see that I was dilated, and she told me to go right to Labor and Delivery. I asked if I could first go home and pack my hospital bag, and she said I needed to go right to the hospital. I burst into tears, as I realized the gravity of the situation. They checked me at the hospital, and I was 3 centimeters dilated, 80 percent effaced and having regular contractions. They explained I would need a C-section if I delivered, and I nodded, understanding that all my preparation didn’t matter at this point.
The night I was admitted, they started me right away on medication to stall labor, as well as medication for the babies’ lungs and brain development. Members of the NICU team met us in my Labor and Delivery room and went over the risks of giving birth to 25 weekers. While I’m sure more was said, all I heard was that it was a real possibility they could die either during birth or shortly thereafter, and that even if they lived, severe disabilities (such as cerebral palsy) were much more likely. The next four days were spent with my body fighting preterm delivery. I couldn’t cry, or my contractions would pick up. My heart broke to be away from my 2-year-old, Ariana, although I knew my family was taking amazing care of her. My husband didn’t leave my side, and if I thought our infertility brought us close together, it pales in comparison to what the next three months would bring. On the evening of the 18th, four days after I was admitted, I told my husband I thought the twins were coming that night. The monitor wasn’t picking up very many contractions, but I kept telling him and my nurse that they were there and painful. When my nurse finally adjusted my monitor, it became clear that these boys were coming soon. One of the doctors in my practice checked me, and I was seven centimeters dilated. They immediately prepped me for a C-section.
I remember feeling relief. If I had any control in the situation before, I knew that was gone now, and it was up to God and the doctors. My memory of that night hasn’t been pieced together, and probably forever will remain disjointed. When I think back, I see my Ob-Gyn telling me everything will be okay and hugging me as I got my spinal. I hear myself ask several times where my husband is. I picture myself laying there and waiting several minutes after they said, “Boys are out,” to ask quietly, “Are they alive?” I feel crushed when I ask a nurse to guess how much they weigh, and she answers, “About a pound.” Minutes pass. A nurse comes out and tells us their weights and Apgar scores. Luca David was one pound 14 ounces. Apgar 5 and 8. Liam Michael was two pounds one ounce. Apgar was 8 and 8. Chris and I look at each other, and we were thinking the same thing. “They might make it.” They were born at 10:39 p.m. and 10:41 p.m., respectively. It took much longer for us to see the boys than the nurses expected, and I kept asking the night nurse if they had died. Around 3 a.m., Chris, my parents and I finally were able to go to the NICU to meet the babies. They wheeled me over on the stretcher. My memory of seeing them that night comes mostly from the pictures taken.
Pictures don’t do justice to how tiny and fragile they were. They were very pink at first, and their skin looked like it might fall off to the touch. Within days, the skin turned and looked bruised and thin. They lost 20 percent of their birth weight, more than is expected. We were told the first 24 hours were critical. After that, we needed them to make it 48 hours, 72 hours and then one week. After one week, they said, we would have a better gauge of prognosis. News of their birth was met with more “I heard the bad news,” “I’m so sorry,” and “Congratulations, I think?” than I care to remember. My heart broke with each picture I texted or posted on social media and each comment about their breathing apparatus, blankets, size, anything but how cute they were. Preemies look different, and I knew it scared people. Being discharged without babies in car seats made my heart ache, and I cried off and on that whole day. I went straight up to their sweet, empty nursery and bawled, wondering if only one baby would end up in it – or worse, no babies. Being home with our first baby was an amazing distraction, but I can’t imagine how it would feel to not have her there with us. When the boys were a week old, we got to hold them for the first time. They felt like everything and nothing all at once – so heavy with emotion but with almost weightless bodies that were hardly noticeable on my chest if not for the hard, plastic CPAP mask poking me.
Being a NICU parent is indescribable and changes you in ways I never could adequately put into words. We watched our babies fight for their lives with every breath they took. We received calls in the middle of the night saying they stopped breathing and turned blue. We later witnessed it in person on multiple occasions. We listened as a doctor told us that Liam might need heart surgery. We took the ambulance to Philadelphia when Luca was transferred to another hospital for possible eye surgery (that he thankfully didn’t need). Thanksgiving was spent in three different cities, just so we could see each of our three children. We watched a mom mourn the loss of her precious baby, a twin, born a week older than the boys. Our lives revolved around numbers, which helped my husband (an engineer) process everything, but made me feel disconnected. I struggled with the desire to talk to people who weren’t here, witnessing what we did on a daily basis. To that end, we felt an instant love for those who were in the hospital with us: the doctors, nurses, fellow NICU parents, etc., and we developed a new appreciation and love for those friends and family who spent time with us in the NICU. The doctors and nurses also spent so much time visiting us: telling us stories, making us laugh and giving us hugs when we needed it. When I say we couldn’t have done this without them, I’m not just referring to the obviously extraordinary medical care they provided our children. We will remember them always.
I type this at 11:26 p.m. with Luca in one arm, my other hand typing as tears fall down my cheeks. I’m so grateful he and his brother are with us. We are tired - it’s been five months since we slept well. The seven weeks they have been home have been the sweetest challenge, filled with sleepless nights, tons of specialist appointments and more love from big sister Ariana than I ever imagined. She has stopped asking me every night and every time we leave the house if we’re going to the hospital, and that helps me know we all are healing. We have been running a marathon, but God met us here and had the perfect people in our lives to run with us. We know we will make it.
Why have I told you this story? As the cocaptain of the team, I encourage you to walk with us. Support the babies yet to be born too early. Support the next family that will tell a similar story. Join our team in honor of Luca & Liam and help us to help the March of Dimes raise money to help create a lifeline for babies in the NICU, connecting them with the critical treatments and care they need. Join the Lehigh Valley Breastfeeding Center and our family on April 29th at Cedar Crest College as we March for Babies. Donate or join our team here: https://www.marchforbabies.org/team/LVBCpeanuts