For many parents of preemies, it’s faith that carries them through an early birth and then the roller-coaster ride that is the NICU. Such was the case for Danielle and her husband, who welcomed their baby boy into the world much too early. Early on, they made the decision to weather it all with a smile. This is Danielle’s story in her own words:
On April 8, 2013 our lives changed forever. I woke up that morning, went to work and had a normal day. Same for my husband, Bobby. I came home from work and noticed I was “leaking”. I had an AMAZINGLY EASY pregnancy – no morning sickness, baby was growing on target and looked perfectly healthy at every scan, I felt like a million bucks the whole time. I actually couldn’t have asked for a better pregnancy. I loved being pregnant and my husband loved me pregnant. We were so excited! We weren’t finding out the sex either, which made every day we got closer more and more exciting. I called the doctor’s office not really too worried and they told me the office was closed to go up to our hospital’s labor and delivery unit to be checked out as a precaution, so I met my husband at home and we went. It never occurred to us we wouldn’t be leaving that hospital for almost 3 months from that day. And so our journey began…
I went and got examined – our worst fears proceeded. My husband, always calm, remained cool but the whiteness that washed over his face when a nurse walked out and a PA walked in let me know something was up. I’d never seen that look on his face, he was worried. During my exam we learned my blood pressure was high. A PA came in and did a quick sonogram. She asked, “How many weeks pregnant are you?” I told them excitedly I was starting week 27 and my third trimester this week. They asked if I was sure I was 27 weeks pregnant. I answered nervously I was 100% sure, why? No answer, just “let me get the doctor.” The doctor came in and told us the baby was measuring small. Everything from this point on is a blur. Small? Huh? Okay so the baby is small? What does that mean? Confused I asked how that was possible.
At my 24 week checkup my blood pressure had been fine and so was the baby. They began to tell me that somewhere between weeks 24 and 27 something changed. I had felt fine the whole time so I was confused. They asked if I felt the baby move often and I did all the time. They asked if my husband was able to feel the baby kick a lot yet – by 27 weeks he should be able to feel the baby often. I turned flush, he only was able to feel the baby kick once despite every night me pressing on my belly with his hand so he could feel it too. We learned that my blood pressure was steadily rising. And as my blood pressure rose my umbilical cord began to restrict blood flow to the baby so the baby wasn’t getting all the nutrients he/she needed to grow properly. This was not good for the baby…or me we’d soon learn. The one saving grace – the baby was fully developed to 27 weeks internally. But his/her weight was that of a 23/24 weeker. They told us we’d have to stay overnight to be observed and to monitor the baby and so we stayed. Me, a confused scared mess hooked up to a million things in a hospital bed, and my 6’1” husband cramped sleeping in a reclining chair, where he’d wind up staying another 9 nights, never leaving my side.
The next morning after getting no sleep we were told I’d have to stay in the hospital on bed rest for the rest of my pregnancy to keep my blood pressure down and so that my blood would pump directly to the baby. 3 more months…in a bed…in a hospital. Ugh. Okay, I thought, this stinks but whatever I have to do for the baby I’ll do. My blood pressure continued to creep up that Tuesday. They started me on medication to control it. It didn’t work. We met with several maternal-fetal health specialists that day and had countless sonograms done to check the baby’s blood oxygen levels. The baby was doing okay despite my health taking a turn for the worse. They told me they would start me on steroids, which would help the baby’s lungs develop quickly in the event they’d have to take the baby soon. I nervously laughed and joked with the nurse – take the baby? The baby wasn’t due until July 9? It’s only April 9. No way.
They explained to me I had officially been diagnosed with pre-eclampsia and something could happen to me and the baby if my blood pressure didn’t come down and if they had to take the baby to save me they would. I laid there scared and confused. Throughout that night my blood pressure got worse. They started me on a magnesium drip so I wouldn’t have a seizure or worse a stroke from my rising blood pressure. On Wednesday they gave me another round of steroids. The blood pressure meds seemed to be working – my blood pressure was still on the higher side but stabilized. Thursday things took a turn for the worse – my blood pressure rose so they upped my dosage of the meds and gave me more magnesium. My OB/GYN came to talk to me about what was going on and what to expect if they had to take the baby, as well as a group of doctors from the NICU came to talk to me about what to expect if we had such a severely premature baby. I still wasn’t grasping what was happening. I was numb, frozen, in shock. I kept telling my husband they can’t take the baby so early, the baby is too small. He kept telling me they had to or something could happen to me. I didn’t care. I wanted what was best for the baby – staying inside me. They prepared us for the worst – the baby could be stillborn, the baby could not be breathing, the baby could not make it, the first few weeks are the most crucial, the baby would be in the NICU for an extended period of time, probably past his or her actual due date, we probably couldn’t see the baby for a while depending on his/her condition. My doctor told me to pray and keep praying. I’d never heard of a 1lb baby before this. I was a preemie, born just under 5lbs and 4 weeks early, and to my family I was small but a 1lb baby? They estimated our baby was about 1lb, 5oz – maybe less. How could he/she survive?
On Friday, April 12, I started to not feel so great. My blood pressure went through the roof, my liver started to shut down, my blood platelet count started to drop and I had protein in my urine. I was diagnosed with HELLP Syndrome. HELLP is a life-threatening obstetric complication usually considered to be a variant or complication of pre-eclampsia. The only resolution: to deliver the baby. At 3:25pm that day they told us they had to take the baby or I was going to stroke out or start seizing and in both of those cases the baby would probably not make it and maybe I wouldn’t.
I pleaded with the doctors and nurses, please no, I pleaded with my husband and begged, the baby can’t come yet. I wasn’t fully understanding I could die, I just wanted to protect the baby. I didn’t care at that point about myself. As they wheeled me down to the labor and delivery floor I sobbed. I wailed in the wheelchair. All of my worst fears were coming true. Why me? Why my baby? Why is this happening to us? I remember being wheeled down and the nurses I’d spent 5 days getting to know rubbing my hair, holding my hand, telling me it was going to be okay, praying with me. I remember the way people in the hallway looked at me with sad eyes watching me sob so horrifically. I didn’t get it. We were good people my husband and I. Loyal to each other, good to our families and friends, why us? I’d soon realize this happened to us for those exact reasons. We could get through this together and with the incredible support systems we had around us – our families. In the time that proceeded this they came every single day to visit us and our baby and were so in love with him despite it all; the tubes, wires, his size didn’t matter to them, all they saw in him was beauty.
We got to L&D and they began prepping me as I cried laying there helplessly. All the doctors looked at me with sad eyes trying to encourage me. My husband was getting his scrubs on and through it all, had a smile plastered on his face. He looked at me and said, “We’re going to have a baby!” Through this all I forgot there was still something to be happy about…our baby. A baby is still a baby and a blessing…no matter what size or how they arrive into the world. At this point my husband had called our families and they were (all 30 people!) waiting in the lobby for the news – feeling elated, terrified, excited, scared for my health, worried for the baby and our future, just a mix of emotions.
A minute before they wheeled me in to the OR for my emergency C-section my husband took my hand and we prayed. He looked up and said out loud to my deceased father-in-law in heaven (Robert Paduano – my husband was a junior and if we had a boy, he’d be Robert the III or “RP3” we’d call him), “Dad, please, I will never ask you for anything ever again if you let this be okay. Please dad, please. With a tear running down his face, he smiled and said, everything is going to be okay.” In that moment, I don’t know why or how but I believed him. A sense of calm came over me. My OB/GYN walked in and held my hand as they wheeled me into the OR. They gave me my epidural, laid me down on the operating table, they guided my husband in and began my C-section. We prayed out loud together. There was a team of NICU doctors waiting beside us to grab the baby and run. I was in a dream state but remember my husband holding my hand and smiling at me. We wanted a boy first and both felt we were having a boy our whole pregnancy. For the first time ever I felt excited since this ordeal began. I felt one final tug and my doctor yelled, “IT’S A BOY!”
My husband burst into tears, fist pumped in the air with excitement and slapped the anesthesiologist five. We had our boy and so Robert Anthony Paduano III (“RP3” – maybe the next great NFL quarterback?) arrived into the world weighing 1lb 4oz, 11 1/4” long and a spitting image of his father right down to his hair line with his grandfather’s blue eyes. We believe his grandfather gave him those blue eyes to let us know he heard our prayers and was watching over the baby and us the whole time. He came 13 weeks early but he was right on time as far as we were concerned. He was small and full of fire and just perfect.
From the state of my umbilical cord post-delivery we were told if he didn’t come out when he did he’d probably would have been stillborn. They told us be prepared our baby probably wouldn’t come out crying. He came out screaming and peeing. Within a minute, a NICU doctor came over and told my husband he could come see the baby. We were shocked. Really? The NICU team was just as shocked that he was as stable as he was. He not only got to see him, he put his finger in the baby’s hand and our little miracle man closed his hand around his finger. He was 2 minutes old and holding his daddy’s hand already! The baby even scored an 8/9 on the APGAR, the very first test given to a newborn to quickly evaluate their physical condition and to determine any immediate need for extra medical care. They told us he scored the highest that day of any baby, even the full term babies. That’s our boy we thought. He came out feisty and hasn’t changed.
My husband ran back to tell me, we kissed, we cried and that’s all I remember until the next morning when I woke up. I don’t recall our families coming to see me in recovery. Everyone did tell me though that when Bobby stepped off the elevator to share the news it was a boy he had a smile across his face that would never be forgotten. He yelled “IT’S A BOY!” and said cheers erupted through the lobby. Everyone, including grown men, yelling and crying…I was okay, the baby was stable and alive. Life was good again.
A full day went by before I was allowed to the see baby. I wasn’t allowed to go down to the NICU until after my meds wore off and I was more stable. That was the longest day of my life. Finally on April 13th in the evening I got the okay and was wheeled down. Still heavily medicated from my C-section I remember being scared to see him. Bobby showed me pics he took but what would he look like in person. The first time I laid eyes on him I wept uncontrollably. A nurse handing me tissues, Bobby holding me up. He was so small and fragile looking, almost completely see-through, his legs only as thick as my husband’s fingers, you could see every vein in his body, hooked up to a million wires but beautiful…and mine. I was his mommy and the minute he heard my voice he cracked open an eye and looked me dead in the face. He knew me and I knew him. The truth is, he saved my life. Turns out I wasn’t leaking amniotic fluid. The baby kicked me in the bladder and made my bladder leak a little. If he didn’t kick me I never would have gone to the hospital and there’s a chance one or both of us wouldn’t be here today. He’s my guardian angel.
At 1lb, 4oz Robert Anthony came out breathing on his own – never intubated. Those steroids they gave me worked. Although he was born with Severe IUGR (intrauterine growth restriction) his lungs were mature and so was everything else. He was a miracle. And so our NICU journey began with our micro-preemie. I was in the hospital for 5 more days post C-section and was wheeled down several times a day to see the baby. I’d sit next to him in my wheel chair and cry. Things were still foggy to me. The day we left the hospital without him was the worst day of my life. We came home for a few hours and hibernated. I sat in our living room still in pain psychically and cried. We tried to focus on the positives and knew we had a long road ahead of us but he was alive and healthy, that’s all we could ask for. We prayed and never stopped and every night before we’d leave that baby we’d pray over him and beg for him to be okay.
That night we went back to the hospital and I was asked if I was ready to do skin-to-skin with him or “kangaroo kare.” It helps the baby to regulate their body temperatures and heart rate. We were so excited! When they placed him in my arms all the sadness I was feeling dissipated and from that point on I decided no more feeling sorry for myself. And so for the next 75 days with a smile, sometimes sad and holding back tears, I’d live in the NICU basically with my baby boy, getting to know every machine, every beep I heard, every nurse, and every doctor. They became another family. My husband eventually had to return to work and would come right from work at 5pm to see the baby, we’d go grab dinner, then go back at 8pm for bath time. This was our life now. We celebrated my husband’s birthday in the NICU, my first Mother’s Day, my 30th birthday and my husband’s first Father’s Day. And so we watched our baby grow for the next 2 ½ months celebrating every ounce he gained and every hurdle he passed.
He started out a tiny transparent little man with a head the size of a plum. He was on CPAP to aid his breathing (on room air the whole time). He had an umbilical line, two PICC lines, countless IV’s, three blood transfusions, an NG tube, an OG tube but we were blessed. Considering his birth weight he cleared all hurdles as we anxiously awaited day-by-day. Just over half of micro preemies have a PDA. A PDA is a persistent connection between the large vessels near the heart. The connection is normal for a fetus, but should close when a baby is born and begins to breathe. PDAs are treated with medication or surgery. His closed on its own. He never got an infection, the fragile blood vessels in his brain never ruptured and he never got NEC (necrotizing enterocolitis), which is when the linings of the bowels become infected and begin to die due to prematurity. The blood vessels in a micro preemie’s eyes are not fully formed at birth. When the vessels develop, they may grow so rapidly that they damage the retina, called ROP. So far his eyes have begun to get better on their own.
The only thing I was able to do for my baby was supply him with my breast milk, which is something I’m proud of as it wasn’t easy to be pumping constantly while in the NICU all day or all night long at home without him even there. The live cells in breast milk that protect babies from infection can be even more important for premature babies: preemies face a higher risk of infection because their immune systems are particularly immature. But if I could do something to help I’d do it and so I pumped away all day every day so much so my freezer had nothing in it but breast milk for the 2 ½ months he was hospitalized.
We learned to take care of him through the isolette. We changed his teeny diapers that were the size of a post-it note, did skin-to-skin daily, helped give him his nightly sponge bath, learned to swaddle him and hold him – tubes & all, played Baby Mozart for him, we watched him grow daily. How lucky were we we decided? Most people’s babies grow inside their bellies, but we got to watch our baby grow. We watched him gradually get better at breathing, we watching him learn to digest and feed properly, eventually graduating to taking a bottle. He went from eating a half a CC every hour being slowly dripped into his belly via a tube to now taking a 75-90 CC bottle in 10 minutes. Remarkable. If you see him now you’d never know what he’s endured. We watched him smile for the first time, he’s still the most smiley guy around. He was always feisty too – pulling off his CPAP constantly, pulling out his OG or NG tubes, fighting anyone off who tried to change his diapers. As one of his doctors said, “he think he’s 10 lbs”. We watched as he eventually he went from “Lil’ Bob” to “Big Bob” when he hit 4lbs.
On Tuesday, June 25, 3 weeks ahead of schedule or when we thought he’d even have a possibility of coming home he was discharged. We were blessed – he came home with no breathing apparatus, no oxygen, and no feeding tube – just him.
Since he’s been home he’s thriving, now weighing about 6lbs and growing every day. The team at Cohen’s Children’s Medical Center (New Hyde Park, NY) took such amazing care of him and were always 5 steps ahead. No one should lose a parent or child due to pre-eclampsia…we truly got lucky.
At times I feel robbed of the experiences I didn’t have bringing our first baby home but we are blessed that he’s here today and when I look at him, I’d do it all again.