This was it. This was that moment- that instant in life where my entire world seemed to pause. Everything and everyone around me had froze. It was that moment where my voice decided to desert me because my tongue suddenly had swelled up, blocking any words from exiting. It was the moment where I became helpless, confused, and terrified all at the same time. Our daughter was extremely distressed and struggling to survive at that moment. Her heart rate was dipping, plunging dangerously low to almost no beat at all. She was literally working to survive and we her parents had no idea just minutes earlier. While I happily drove to that appointment singing out of tune to the song Rip Tide, she was slowly disappearing. While I was on hold about our insurance referral being faxed over for fifteen minutes, she was begging for help. While we sat there listening to the doctor tell us we were going to be delivering that day, both our jaws on the ground- she was hanging on by a thread.
We found out that I had placenta previa. This caused the placenta to block the baby from growing causing intrauterine growth restriction otherwise known as “IUGR.” The growth restriction meant that our baby was not growing- had not grown since week twenty five.
This is my favorite picture of us. I could not hold Mae for the first 3 days because she was too sick. When I finally did, she was like a feather on my chest and it was magical.
The day that changed us forever...
I have pulled all nighters before. Typically they involved bottles of red wine during a hurricane while friends of mine huddled around a kitchen table playing games like spoons and beer pong. This particular all nighter was unlike any hurricane. The night entailed me staring at a heart monitor with heavy eyes. I stayed up that night until the wee hours of the morning of September 30, 2014. I saw my baby’s heart rate dipping but no one was rushing in to take me away. I could hear my husband Dave stirring next to me. We would occasionally say something to each other then go back to staring at the monitor in silence. It wasn't until we both finally fell asleep that the nurse came into check on me. It was six in the morning.
“You okay?” Puffy eyed Dave asked me.
“I’m okay,” I said taking hold of his hand and letting my fingers brush his wedding ring gently, the same ring that would soon be put on our daughter’s small wrist as if it were a bracelet.
“Sorry but we need to go,” came a nurse out of no where. My grip on Dave’s finger fell and the grape juice I took once sip of was ripped away from my other hand. Speckles painted the white blanket that I had laid with the entire night. I stared down at the purple droplets trying to make sense of what was about to happen. I had just been with my family a mere forty eight hours ago to celebrate a birthday. Over roast beef and mashed potatoes with gravy we talked about someone who recently had a baby at twenty five weeks. Something went terribly wrong and she was in a coma after the delivery. She never got to meet her son, never got to hold him or smell the newness of his skin. He survived for thirty days then after that, he left this world as quietly as he had entered it. This was the heartbreaking story that I had JUST heard about. My mind kept racing with that story. Thirty days. Thirty days. When I heard about what happened to this first time mother, I thought to myself I could never imagine. It also never even crossed my mind that it could and would happen to me. I had already gone through the hell of trying for a baby, I was done dealing with challenges right now. It was my turn to just be normal, to have a big stomach that bounced up and down when laughing, to bring my Pinterest board for a baby room to life and to begin demanding pickles dipped in Half Baked Ben and Jerry’s.
“Is it go time?” Dave asked our doctor who quickly appeared. He nodded and gave a funny, "hell yes."
“This is it,” said Dave, squeezing my hand.
Should we be excited? Should we be terrified? I didn't know what we should be. Once I was taken to the OR, I remember curling up into a ball like sonic the hedgehog on a metal table. They opened the back of my gown. My doctor's big arms wrapped around me like a bear hug while they inserted the needle into my spine. He smelled like fresh dough and Old Spice. I buried myself into his scent, trying to keep it together. I don't know if his bear hug was protocol or just a way of forcing me sit still and keep from bouncing off the table like a shaken up bottle. Either way it was what I needed. I needed that hug, that tight grip to remind me that these people were going to take care of me, to take care of this baby inside of me. Everything at that point was moving fast.
“Wait,” I cried through the tightness of his hug, breathing ragged, “is my husband coming?”
“Soon,” responded an anesthesiologist hovering above me, “Can you feel your legs?”
I shook my head no. My legs were gone. Where did they go? Then the anesthesiologist’s warm soft hand reached into mine. He was a young guy who was talking about The Walking Dead show as if we were old friends just grabbing a cup of coffee. “Did you see Sunday’s episode?” he asked me. I nodded that yes I had seen it. Why was I even responding to this? He had a tranquil energy about him that was calming and it made me feel safe. I am thankful for him and his hand that day. He tried to move away from my hold but I squeezed my grip harder, not letting him escape me. That hand gave me courage until Dave did appear fully decked out in scrubs and a shower cap type hat. He looked excited, scared, every sort of emotion possible was painted all over his face- even the secret thrill of wearing hospital scrubs that only I could see.
“They wouldn’t,” he paused to catch his breath, “let me back here.”
“I know,” I said keeping my eyes on his, “did you tell everyone?”
He nodded, “I saw your Dad pacing around out there like a crazy person.”
A nurse laughed, “You just wait. In thirty years you will be doing the same thing.”
Dave rested his hand for a moment on my forehead. He looked around the room frantically, letting his eyes flicker from doctors to tools. This was it. This was our delivery. It was here. Our baby who I like to refer to as our eager star that was watching over us simply could not take it any longer- she fell down from the sky to meet us. “You were just eager, curious about the world,” I would tell her when she would begin to wonder what happened to her.
After a whole lot of tugging and pulling and what felt like jumping on my stomach, my doctor's voice finally came from behind the blue sheet that was draped above me. “Want to know what it is?” he asked.
Dave and I wide eyed looked at each other, both a little paler, a little older. “Yes!” We shrieked in unison, completely forgetting that we didn't know the sex.
“It's a baby girl.”
A girl. We have a girl, a daughter. Dave and I cried, he kissed my forehead gently.
“Mae?” He asked me.
“Mae Rose,” I said.
Dave left me for just a moment to check on our sweet Mae Rose that I couldn't hear or see. I never heard a peep, never saw a head of a hair and never felt her velvety skin. I lay there while the doctors put me back together. Nurses whispered congratulations and the room became crowded from the early morning shift change. The congratulations felt wrong to me. My body was numb everywhere but my heart ached, it ached so badly for Mae’s touch.
Dave was able to run out and give the news that “it's a girl!”
I was moved to the recovery room where the rest of my family joined us. No one knew whether to congratulate me or offer their condolences. It was a strange feeling. It felt wrong to be excited but I had just had a baby. This was my first child so how could I not be a little excited?
Everyone around me was a blur, they seemed happy but it was tainted with anxiety and fear. I still had not gotten to see Mae and it had been almost four hours. Dave went down to the NICU where she was taken immediately after the birth. Mae had to be intubated which meant that a tube was inserted into her mouth and down her airway so that she could breath. The surfactant drug (to help with Mae's lungs) that was injected in me prior to the delivery essentially did nothing, it was ineffective. Once we knew that the procedure of putting the tube into her airway was complete, Dave face-timed me from the NICU. My first time that I ever got to see my sweet baby girl was through the iPhone. It was because of an Apple device that I was able to see her small, beautiful face, her dark hair and doll like arms reaching out toward me. I cried and cried as I gazed at her through the cracked screen on my iPhone, the drops were uncontrollably falling from my swollen eyes. The drugs that were still skating through my veins caused me to have sloppy, drunk like tears. Tears you get after a couple of margaritas that make no sense. Mae’s tiny body was covered in all sorts of wires- it was like more wires than baby. She was in a small box, her hands barely moved but they moved.
“Hi Mae,” I whispered through my tears into the phone. There was an audience around me. I saw my sister and mom turn toward the window. I wanted to melt into the sheets and drip onto the floor like a puddle of nothing. I prayed. "Please God let Mae be okay. Please let her survive this. Keep her safe. She doesn't deserve this. Please. Please. Please."
Meet Mae Rose born ten weeks too early. Mae weighed only 1 pound 14 ounces and was 12 inches long. That is the weight of a little more than 4 sticks of butter and the length of your childhood ruler. In addition to being born prematurely, Mae was very sick. She had to spend her first Halloween, Thanksgiving, Christmas, New Years and Valentines Day in two different NICUs. It was 143 long, painful, joyful, terrifyingly unforgettable days.
A dark time...
It was finally Dave and I alone, back in the maternity wing next to the nursery of crying healthy babies. Dave was not himself. He was more than upset, he was actually crying. This is another moment that will forever haunt me. He came into the room looking blank, completely lifeless.
“What is it?” I asked. He couldn't even get the words out. It was like he lost the ability to speak. I learned later that while he was standing above the glass that Mae was in while I rested, things took a drastic turn. Someone ran over to him, escorting him from the room. A doctor named Sheila appeared and looked at him and said, “I am going to save your daughter.” He could not believe those words just left her mouth. That moment is Dave’s hell, it is his torture. Dave waited outside the NICU pacing back and forth, choking on the uncertainty.
“Dave?” I asked. I felt like he was lost and didn’t know that I was in the bed in front of him.
“She stopped breathing.” I never saw Dave like that. I never saw him cry. The closest thing to crying was when Allie Calhoun from The Notebook couldn't remember who her husband Noah was because of her Alzheimer's eating away at her brain.
“Is she alive?” I asked, shocked that those words could even leave my lips. It was like sludge coming out of my mouth. I was still feeling drunk and high from all the medication slithering through me. Was I seriously asking if my brand new daughter that I had only met for about three minutes and had not even touched yet, was alive? After Dave had his chat with Sheila, he collapsed into the hallway in front of his mother and step-dad. Sheila had said to him, “your daughter is not breathing on her own. She has tongued out the ventilator. There is a fifty percent mortality chance here.”
Dave wept and put his head down in between his trembling palms as he tried to get the information out to me. He was defeated, completely empty. “It's not good,” he kept saying over and over, the life gone from his hazel eyes. His mouth was dry and full of that thick saliva. I wondered if he had had anything to drink yet, if he had taken a moment for himself.
“Do you have a minute?” came a gentle voice from the doorway. It was Sheila, the neonatologist. Sheila was a young woman with a soft spoken voice. She had black hair that framed her smooth dark skin. Her almond shaped eyes were kind, I trusted her instantly. Sheila sat down in the chair next to me and began talking about Mae’s lungs. “I just spoke to your husband but wanted to meet with you both,” her voice was tranquil but threaded with a grave tone. Something she may have had to practice as a med student to prepare for giving families tragic news. She told us that Mae had a fifty percent chance of survival and couldn't promise anything. My heart squeezed. It felt like it might pop and burst through my chest. I pictured Mae’s mouth, the small lips quivering. I had to stay strong. We had to stay strong. Mae made it this far, she just needed to stay with us. “We are doing all we can but I need you both to be prepared.” She hesitated on the word “prepared.” Prepared for what? For a death? I wanted to scream. I wanted to smash my head into the cement wall, to take away this pain that was clutching tightly around my throat.
That night was difficult, probably one of the most trying moments of our lives. When I was finally able to get into the wheel chair I went down to see Mae again. My mother had given me a St. Theresa prayer card to put by Mae’s bedside. She was known as St. Theresa “The Little Flower” and had always been my favorite Saint. She did small acts of kindness her whole life, little things that had an impact. “She would always hold the door for strangers,” I remembered being told as a young Catholic school girl. I don't know where my mom got the prayer card or who gave it to her but you could tell that it had been with her for some time. The edges were frayed a bit, like it had been through something already. There was even a small scribble of blue ink in the corner, like someone was testing out to see if a pen worked. That day, I held onto the card, brushing the edges gently with the tips of my fingers. I was thinking of what Sheila had just said to us.
“Ready to see her again?” Dave asked me as he wheeled me up to the door. A women peeked through the little glass window, like we were at drive through ordering the number two at McDonalds. I wished I was reminding Dave to tell them not to forget the ketchup packets instead of where we actually were.
“We are here to see Mae,” Dave said, pealing back his sleeve to reveal the hospital bracelet with our daughter’s information on it, evidence that she was ours. It was like we were giving our ID to the bouncer to get into a club. The door clicked open and we entered into the room. Dave gave me the run down on how to sanitize my hands properly. There was a whole method to it with four steps. Phones must be wiped down and remain in a bucket while the hand cleaning was done. Sanitizing was important. Keeping these babies safe from germs was priority.
I noticed that there was a sign that hung above Mae’s spot. The sign read “MAE” with a princess beneath the letters. The princess looked like Princess Peach from Nintendo Mario. Every baby in the NICU had their name above their bed too with a digital image, a butterfly, a car with a face, a soccer ball or a lady bug. There were other parents in the room with their sick babies as well. Eyes flickered in my direction from all over, they were curious.
Just as I was settling in for my visit, the alarms began beeping all around Mae. A swarm of doctors and nurses surrounded her instantly, Sheila being one of them. Her composed statuesque face from earlier didn’t seem so calm anymore. I don’t know where she came from. I hadn’t seen her when I first got into the room. It was like she busted through the walls leaving an imprint of her body with dust and smoke in her path. Someone pushed my chair out of the way and I gripped on tight to the prayer card still in my hands. “What is happening?” I whispered. The tears were falling from my swollen eyes
“Mom I think it is best if we move you outside,” a nurse said to me, leading us back into the lobby. Dave saw what was happening and tried to figure it out. It was like what happened hours earlier with him. We had thought she was stable now. I began to cry- the only thing I seemed to be able to do.
“Did you want to put that with your baby?” A woman wearing an awful brown color scrubs asked.
“Yes,” my voice shook.
“Do you want the prayer or the Saint facing the baby?” She asked.
I don’t know. Which is the right way?
“Um, the Saint,” I said feeling like Saint Theresa the Little Flower would like to see my own little flower.
The woman took the prayer card from me and brought it back into the NICU.
“Thank you,” I said to her after handing her the card with St. Theresa. She nodded and headed into the doors we were just escorted out of. “I’m so scared,” I said to Dave.
“There is Sheila,” he said walking toward her. She had plastic gloves on and a mask over her nose and mouth. She held her hands in the air, not touching anything looking right at us through her dark almond eyes. Before we could open our mouths, Sheila said, “She’s alright. Your daughter is okay” It was music to our ears.
As a Proud Preemie Mom, here is what I learned:
Nurse are everything.
To take care of something so small and helpless takes an amazing person. Nurses become your friends, your brothers, your sisters and even your crazy inappropriate Aunt. They are remarkable human beings who get up ever single day and night to take care of someone else’s child. They teach you how to change your baby’s diaper, take a temperature and eventually if you are lucky, how to take a bottle. They are with you when you hit rock bottom and think you cannot take one more day. They hug you when Santa comes to visit because they know that this is not how you imagined you would celebrate your baby’s first Christmas. They decorate your baby’s bed for holidays because they know how much it means to you. They make you laugh and forget even if it is for just one second.
This was a sad day. Santa came and I completely lost it. Afterwards, a nurse I never met hugged me. It meant the world to me.
The nurses helped us set up a Christmas photo shoot that was unforgettable! WE had so much fun and I know Mae will love these when she is older.
People are good. Sometimes it takes something unfortunate happening to remember that people truly are special. The impact that something as simple as a home cooked meal, gas money for hospital travel or even a Facebook message from someone you have not spoken to in over a decade, can be overwhelmingly incredible. Family and friends are why parents with sick babies get through the day.
My husband and I received a gift basket from our family on Christmas Day filled with endless love.
Preemies have an undeniable strength. No baby is the like the other. This is something you learn in the NICU. They are miracles, fighters, warriors and sometimes just brief angels that cannot stay for long. They take on blood transfusions, needles, surgeries, breathing tubes, feeding tubes, IVs and never ending tests. They endure the unimaginable and continue to fight.
Partners make you whole. My husband Dave of now six years and my best friend for almost fourteen has always able to see the light at the end of the tunnel. He kept our family together and I am forever thankful to him for that. He sent text messages out daily to family and friends that were hilarious and also helpful to those who were not familiar with any of the crazy terminology. When some days seemed impossible, he stuck with it. I think it is safe to say that he was the highlight of most of the NICU nurse’s day with his flip flops in the winter months, bizarre knowledge on random facts and his unconditional love for his daughter. He participated, asked questions and filled himself with as much understanding as possible during those 143 days (some even thought he should go into the medical field:). He was Mae’s advocate and it is because of him, we got through it.
On December 8, 2014 we were transferred to a different hospital. Dave wrote this in Mae's journal we kept- "Today we wait for a medical horse drawn carriage to take you to a big castle in faraway land. The castle has many doctors and nurses who will work as hard as they can to get you to wake up and grow! The whole Kingdom can't wait to meet you! Long live Princess Mae, they will say!"
He tried to be funny...
Check out Dave's video that captured Mae's coming home! He portrays himself as Gene Rodenbury a querky ners anchor.
Parents are tested. It is heartbreaking watching your baby through a glass box or lying on a hospital bed. You become engulfed in this helpless feeling that swallows you up. You cry harder than you ever have before. You punch your steering wheel until your knuckles swell because of the traffic preventing you to get to the hospital before the doctors do rounds. You secretly curse at the people who complain that their newborn baby kept them up all night. You are envious of your friend whose belly got to stretch big. You grow to have raw hands from sanitizing constantly. You hear CPAP machine alarms in your dreams. You pump endlessly because it is all you feel you can do to help. You refuse to get excited because you know that feeling will be ripped away from you tomorrow. You stop updating family and friends on every detail because it feels like nothing is ever going to happen.
It does end. Then it happens. You get the news you have been waiting for, dreaming for. You hear the word “discharge” and your knees go weak. It is time! When you finally get to leave the hospital as a family, you are so grateful, so happy and so unimaginably close to your baby. You treasure the nurses and doctors for fixing your child born too soon. You love your family and friends more than you ever had before. You cherish every moment spent with your partner through this remarkable rollercoaster. You think of all the good that came from the journey and how you wouldn’t change it for the world. You become a proud preemie mom.
When you go through something that feels impossible, all you can do is hope and pray that it will end. In the moment of heartbreak, it feels like that is all you can think of, all that you can focus on. While Mae was in the NICU, I just wanted it over with. I wanted her to breathe successfully and to get out of there. I look at her now and think of how lucky I am. Some never get to take their baby home and I am forever grateful that I did. I had more time with her than most can say. I was given ten extra weeks to spend with Mae due to her early arrival. I know her. I know everything about her. I know that she is what they call an “ex-thirty weeker” with hypothyroidism- an underactive thyroid. She had hyperglycemia at birth. Her diagnosis is Chronic Lung Disease. Her chest is shaped differently because of it. She had one broken rib while at the hospital. She has three VSDs, one ASD and a coronary fistula- that is five holes in her beating heart. She has alpha-1 antitrypisin which will result in liver and lung disease. She has had five blood transfusions. She was diagnosed with Periventricular Leukomalacia- brain damage. She weighed just one pound fourteen ounces at birth. She has had all of the odds against her. She has survived.
I cannot wait to see the world through this girl’s eyes. The girl who scared us, changed us and continues to surprise us. I am forever thankful for her story though I truly never thought I would be able to say that.
Mae is now a big sister to miss Violet Belle! Our family is now complete and we were thrilled to experience a full term delivery experience! I had the same doctor and nurse that I did with Mae and it was absolutely amazing!
This experience has made my family stronger and closer. We went through so much but came back stronger. All those parents who have faced the NICU know what I am talking about it. You just have to remember that in life you can climb any mountain as long as you remember to just breathe.