A Journey of Courage and Faith: Our Preemie Story

Today’s post comes from preemie mom Lauren, who is an English teacher, wife to Danny, and mother to preemie Christian Hodges. She and her family live in the suburbs of Pittsburgh and enjoy house projects, as well as outdoor activities. This is their story:

My husband Danny and I eagerly anticipated a weekend getaway from cold, grey Pittsburgh to visit family in warm, sunny Naples, Florida for President’s Day weekend in February. I was just about 26 weeks pregnant, and while a lavish “baby moon,” wasn’t in our budget, we thought we could take advantage of a weekend visiting family and enjoying the beach – a welcome change from our busy work schedules and cabin fever. My doctor had cleared me for travel up to 36 weeks, and my pregnancy was smooth sailing after a scare in the fall, so I was feeling very confident about this trip.

We had both taken Friday afternoon off of work and rushed to the airport to make our flight. We braved ice-cold wind in the parking lot of Pittsburgh International Airport and hustled to the terminal, barely making take-off. As the plane was in the air, we passed the time by diligently working on projects that we had to take care of for work while dreaming about our weekend getaway – the last time we would be able to spend some carefree time at the beach together before the arrival of our baby boy.

That Friday night, we enjoyed dinner with family and swam in the pool. We were already feeling so much more relaxed! The following day, Saturday, we woke up early and headed to the beach. I enjoyed swimming with my cousin’s daughter in the waves and wading to a sand bar, where we played in the shallow water together. She ran around the beach and built sandcastles with a friend she made, while I caught up with my cousin underneath an umbrella in the sand. It was a sunny and relaxing day. That night, however, my life was about to change forever, and I was not prepared in the slightest for the enormous life event that was about to occur. Around 10 PM, I went to the bathroom and saw a lot of blood. I yelled for my husband, and he arrived quickly, along with my sister and my cousin. They collectively rushed me into the car and my husband sped to the nearest women’s hospital, where we waited in agony for about an hour to find out that I had suffered a placental abruption and that the OB on call had five minutes to perform an emergency c-section to save my son’s life (and apparently my life as well). I was not told that I was at risk for an abruption up to that point, so this came as a complete shock. My husband and I reeled in terror as we placed our trust in a doctor we did not know at all. I was wheeled into the OR at 11:55 PM and Christian was born at 12:03 AM. Prior to the operation, as I laid on the table awaiting anesthesia, I remember saying a prayer to my grandmother who had passed away in August of the previous year, and I heard a voice whisper that everything was going to be OK.

The days following Christian’s birth were nightmarish. I wanted to celebrate like a “normal” new mother and just feel joy at the birth of my son, but after the anesthesia and pain medications wore off, I was confronted with a reality that I was barely able to handle. I wasn’t able to make it into the hospital until a few days after he was born, and the first time I saw him, I wept after getting up from my wheelchair to peer at my son. He was so tiny – he lay in an incubator connected to countless wires and tubes, and I stood breathless and helpless. I had never stepped foot in a NICU before. The sterile environment, the constant chime of alarms, the whirring of breathing machines, and the announcements such as “Code Blue” and “Code Stroke” along with a team of medical staff running down the hall still haunt me to this day. I did not know at the time that the NICU would become my second home and that I would face some of the darkest, yet most joyful days of my life in the months to come. I was just a terrified mother torn away from my home, healing from the wounds of a c-section, watching my son fight for his life – all 1 lb. 14 oz. of him. I was too scared to hold him, so I simply gazed at him through the incubator and offered him “hand hugs,” where I would squeeze his little body with my sanitized hands and then close the incubator door again in order to keep him warm. After meeting the nurses and looking upon my beautiful, yet impossibly tiny son, I wept again and left the room, allowing someone to escort me back down to the entrance of the hospital in a wheelchair. This – all of this – was a nightmare, and I would wake from it soon, I told myself.

The nightmare perpetuated. I couldn’t wake from this dream; it was my harsh reality. I was terrified, sad, empty, lost, and confused. I was in complete denial of what had happened. The pregnancy hormones didn’t help my thought process. Why did my “healthy” body fail me? Why a miscarriage and now this? Why didn’t my doctors tell me that I was at risk for something like this? Did everyone miss something very critical? Did the doctor on call the night of his birth truly make the right decision, or could I have been put on bed rest for a couple of weeks? Why did this have to happen to me? Would he have permanent problems because of this? Would he even survive this? Would I? I could not stop myself from thinking negative thoughts; my mind was in such a dark place. My family was worried about me, and to tell the truth, I was worried about myself. Even as a positive, faith-filled person, those were the darkest days for me.

I dreaded stepping into the NICU. The alarms, tiny feet kicking in incubators, and sad looking women in wheelchairs, and the barrage of medical equipment terrified me. These sights pierced me to my core and left me feeling vulnerable and frightened. As an empathic person, I watched other families suffer and internalized that along with my own suffering. I saw a mother grieving one day in the lobby – she was lying on a couch, crying hysterically. Her family was surrounding her, hugging and encouraging her, but as I glanced into her eyes, I saw deep, dark sadness. I knew she had lost her child. Moments like that made me feel grateful that Christian was hanging on, but they also made me question the purpose of suffering and why my child was still here on earth with me when hers was in Heaven. These moments also scared me and made me think that I could easily lose Christian too. After all, every single baby in that unit was fighting for his or her life. I prayed for many others in the unit every day.

As I drove away from the hospital each day, my heart broke. However, every time I visited Christian, I felt panic and dread well up inside of me as I walked through those swinging doors and scrubbed up to my arms, taking off all of my jewelry and putting on a mask just to enter his room and be near him. After one long week, I was able to hold him, and it was beautiful, yet also terrifying for me. I had to be convinced by multiple people to hold my own son. His primary nurse handed me a small knit hat the size of an avocado to keep his tiny head warm as a team of about 4-5 RT’s and nurses came into the room. I watched in terror as they taped his breathing tube to his face tightly and gingerly moved dozens of wires as they picked him up out of the incubator. What if I hurt him? What if he stops breathing? I kept thinking that I was going to do something wrong. My heart pounded as they handed him to me. I braced myself and felt sweat drip down my back as I watched his frail little 2 lb. body being passed over to me. As he settled on my chest, he calmly slept; I breathed as deeply and steadily as I could, hoping he would be OK. All of us were overjoyed to see that he did not have any “episodes” (heart rate dips) while he was in my arms. I read him several books and just marveled at the warmth of his soft, delicate skin on mine. Our bodies both adjusted to keep each other warm, and I thought about how beautiful and yet terrifying nature can be. It was a miracle that I was able to have that moment. I will never, ever forget that first kangaroo care session or the people who made it possible.

The days that followed seemed to blend together for the most part: We would drive 45 minutes to and from the hospital each day, check in at the front desk, scrub in, turn the corner, and enter his room nervously, waiting for news from the nurse or doctor, praying that we wouldn’t have to hear anything bad. Some days Christian would have “brady” episodes right in front of us, and some days he seemed peaceful and able to breathe on his own. We became a bit more acquainted with life in the NICU; in fact, we became almost as well versed as a nurse or doctor with the terminology as time went on. Although all of this took a toll on us, the hospital staff and nurses made things brighter and more bearable. We were stuck in the hospital on Easter and Mother’s Day. For Easter, the hospital placed an Easter basket in each of the babies’ rooms. While this was a seemingly small gesture, it meant a lot to us as first-time parents going through an experience such as this. The nurses helped us learn to bathe Christian and would offer to take family photos for us with the cute little hand-knit hats that family and friends either made or bought for us. They even helped me arrange my colorful, fully decorated bulletin board in my son’s room. They knew how much every single little milestone and inspirational memento mattered. In the NICU, as they say, every tiny thing makes a difference. Although we were so far from home, the staff at the hospital tried their best to make a sterile hospital room feel like a living room.

In the NICU, things can quickly take a turn for the worse. As a parent, you don’t want to think about the possibilities. You simply try to keep your eyes on the prize – the return home. As Christian hit 32 weeks gestation, he became terribly sick with a stomach illness, which was believed by the doctors to be possible stage 1 NEC. We were all so shocked, because he had been doing so incredibly well up to that point. He was growing so well and there were seemingly no issues, aside from “bradies” and “desats” every now and again, as well as our inability to wean Christian off of oxygen support. This was the most difficult two weeks in the NICU for me by far. I was just beginning to heal from the traumatic birth experience that I had, when all of the sudden I received a call on the day of his baby shower that my son was going to be reintubated. We had come so far; it just did not seem possible. He had graduated to the CPAP and was just about to be transferred to the nasal canula, when he suddenly backtracked all the way to the breathing tube again. I knew that things were very serious at this point in time.

Although I wanted to run away and pretend that this wasn’t happening, I chose to stay by his bedside and read to him while he was lying in his incubator hooked up to an IV again. I cannot describe the heartache and pain that I felt as I watched my son fight for his life; it took everything out of me, and I would’ve given anything to take the pain away for him. I prayed with every fiber of my being – prayed as I woke up in the morning, prayed by his bedside, and prayed as I drove to and from the hospital each day. At one point, they had trouble reintubating him, and I had to watch as he closed his airways and had to be “bagged.” I cried in front of a room of medical professionals, exposing every vulnerable aspect of myself. I wrote in a NICU journal about my feelings and spoke to both the hospital counselor and chaplain, which helped alleviate some of the intense stress I was feeling. The whole hospital rallied with us. After two weeks, Christian was able to eat again and was making his way back to where he was before he got sick. They had warned us on day one that the NICU was going to be a rollercoaster, and when I had initially heard this, I didn’t truly know what it meant until Christian was very ill. Yes, he had bounced around with modes of breathing support, but this was entirely different.

I visited my son almost every single day while he was in the hospital. I read to him, held him against my skin, and spoke encouraging words to him. I prayed for him aloud. I wanted him to feel my presence as much as possible and know that I was going to be there for him no matter what happened. There was a very strong bond formed in that little room, and as terrifying as the journey was, I believe that I am a stronger woman for this and that the bond I have with my son is unique and special due to the circumstances of his birth. After 101 grueling days, my son was released just after his due date of May 26. We were pushing and pushing for discharge, and the day had finally arrived. I had several breakdowns throughout the journey, including when the end was drawing near. I wanted so badly to go home. My heart ached for normalcy and my soul yearned for peace – a peace that I truly had not felt in quite some time due to the panic I had felt during the early stages of pregnancy and the turbulence that accompanied the early months of his life. My prayers were finally answered, but I knew that we had another tough road ahead of us with the road trip home and adjusting to life without a medical team to supervise and care for our son.

We have been home for a month now, and I happy to say that Christian is gaining weight and seems to be so happy with us. However, he’s had countless doctor visits and continues to experience some issues with his tummy. He will need to have a hernia surgery in July, and although it’s a routine surgery, I dread going back to the hospital again and watching my son intubated and hooked up to an IV again. However, it’s a necessity, and we will survive, because we survived the NICU rollercoaster. I know, deep down, that we can do this, because we are incredibly resilient – all of us. Some days I have cried, and some days I just feel so happy that I have my smiling, beautiful son and that we are able to enjoy the simplicity of each day – the beams of sun bathing us as we walk together in the park or the wonder in his eyes as he gazes at my face and speak words of love to him. I do not take one single moment for granted, even when I feel exhausted and frustrated, because the NICU journey taught me to value life in its most innocent, simple, yet beautiful form. The journey nearly broke me at certain times, but it was also my saving grace, because it allowed me to have my son and experience the powerful grace that follows suffering. In a way, I wish that all humans could experience time in a NICU. It might make everyone a little more caring and a little less selfish. It might allow everyone to rethink their “problems.” I know it forced me to take a hard look at my own life.

As I close this piece, I want to end with words of advice, just some things that helped me cope with everything that might help a mother that is struggling like I was:

• First and foremost, take care of yourself. I did not stay at the hospital all day and all night, although I was there for large periods of time almost every single day. I don’t think I would have made it in one piece if I had stayed more often than I did. Eat healthy. Exercise. Go shopping or go see a movie once in awhile. Take a break. Be gentle with yourself.

• Find an excellent care team. The nurses will be taking care of your son or daughter 24/7, and it is important to form close bonds with them.

• Get to know the doctors. Come to the hospital for rounds each day and make a list of questions. Record notes. Prod for explanations and answers as much as you need to. You are your child’s voice, and you know more about his or her care than you think you know.

• Be as positive as you can be and push aside all negativity coming from anybody in your life. Yes, it is possible to simultaneously be a realist and an optimist. Repeat positive mantras and prayers constantly to yourself. I would repeat day and day out: My son Christian will graduate the NICU on or around his due date and be a healthy, thriving boy. Sure enough, he did exactly that.

• Make the NICU room your own. Decorate it as much as possible with inspirational quotes, cards from family and friends, photographs, etc. Make this place feel like home.

• Celebrate every single milestone. I loved having the Every Tiny Thing milestone cards for photos! I also used the Every Tiny Thing journal to record daily stats, milestones, etc. It helped to be able to record everything so that I would not forget and feel as though we were making some progress.

• Lean on others. It is also very important to connect with other mothers who are going through the same thing. The hospital should be able to offer a support group of some kind so that you don’t feel isolated throughout your experience. Ask to speak with a counselor or chaplain. Lean on your network of people – your family, friends, church, etc. This is the sort of situation that calls for that. Above all, know that you are not alone, and this will not last forever.