For Prematurity Awareness Month, we are continuing our series Prematurity Voices, where we give parents of preemies a place to share their story in their own words. Today, Jenn shares the story of the birth and NICU journey of her 29-weeker:
This was my third pregnancy, so I knew the drill. Every appointment had gone by without any issue. My husband and I were thrilled to be expecting our first girl due October 3rd.
Then at week 28 I went in for my GD (gestational diabetes) test. I kept insisting that my husband come with me, as I just had a feeling that something was wrong. I’d been dealing with terrible headaches and had been feeling “off” for a few weeks. A dear friend offered to go with me, since Chris insisted that he needed to work, reassuring me everything would be fine. Of course, the very first appointment that he misses, something had to go terribly wrong. The good news? I did not have GD. The bad news? My blood pressures were terribly high. The Dr suggested that I may have preeclampsia. I was placed on bed rest and was to return to the Dr.’s office in two days time.
I went home and went to bed. I started trying to figure out how to keep my boys occupied for the summer with friends and family until school started. I was so upset that my summer would be spent inside, in bed. Little did I know I was about to spend it inside the walls of a hospital instead.
My husband bought me a blood pressure cuff to monitor my pressures through the night. The same day that I’d found out I “may” have preeclampsia, my BP shot through the roof. I was home alone with my sons and was becoming incresingly afraid that the high numbers on my new cuff meant trouble. I called my Dr to report that my pressure had soared to 180/120 and was imediately instructed to go straight to labor and delivery. My sister and husband rushed to meet me.
Inside the hospital; no one seemed worried the baby was in trouble. No one seemed alarmed. I was apparently just staying for observation and I was admitted. But after four days of observation, high levels of irritation and a terrifying visit from a pediatrician from the NICU to explain all the risks of having a premature baby, the crap hit the fan.
It started out as a terrible feeling of sharp pains high up in my abdomen. After nurses gave me as much colace as I could take, finally we started to realize something was terribly wrong. The pain was so awful. My body was doubled over; it was so intense that I started vomiting. I couldn’t control my bladder, my vomiting or my tears. There was no hiding my fear. The Dr flew into the room within seconds. She started talking calmly but very fast.
My liver had completely shut down, my kidneys were going into failure. I couldn’t stay pregnant anymore, because my life was in immediate danger. She crouched down, looked me straight in the eyes and said, “We are going to have a baby today.” The words of the pediatrician from the NICU rang in my ears: “possible blindness, chronic lung disease, learning disabilities… try to make it to 32 weeks for a better outcome.” I was only at week 29! She was too little; it was too soon!
My terror melted into a fuzzy rush as medicine was inserted into my IV. I barely remember being taken into delivery. I was given my epidural. More meds, more haze. I frantically searched for the comfort of my husband. Everyone was in blue scrubs. I was being reassured he was on his way. The drugs kept me sedated. They kept my panic at bay. When I opened my eyes again I saw my tear stained husband staring at me under a blue sheet. I looked past him and saw my tear stained sister in blue scrubs behind him. I felt tugging and heard the baby cry. I willed my husband to look at her. He turned to see her and lost it. She was crying! This was a good sign. There were no cuddles, there was no time. They brought her to me, only for a second. I reached out to touch her tiny hand. Then she was gone.
I don’t remember anything past that. I woke up in recovery. Friends and family had gathered. There were so many that the nurse had been kicking people out, insisting that I needed to rest. I was still on magnesium sulfate for my blood pressure. I hated the haze it put me in. My head felt fuzzy, my brain couldn’t process anything. I saw the reassuring smiling faces of my family. No one was upset, everything must be ok. I slept.
When I woke up, the nurses wouldn’t let me go into the NICU. My pressures were still too high. This, of course, put me into immediate distress. I wanted to see her. I wanted to see that she was ok. This wasn’t the way it was supposed to be! I cried and cried to no avail. I wouldn’t get to see her until I was further into recovery. I resented that my family had all gotten to see her before me. I just had to wait.
The next morning I broke down and begged my Dr to let me go see my baby. She agreed, but I had to wait until my next exam. It was the longest few hours of my life. Usually they wouldn’t let a patient leave their bed still on the mag, but I got to be an exception. The nurses helped me into my wheel chair and my husband took me to see my little girl, finally!
Nothing can prepare you for the first time you visit the NICU. My first two babies were housed in the nursery. In little bassinets. Cute, fat, pink, healthy, crying babies with pink or blue hats and smiling nurses. That’s not what it’s like in the NICU. Brookelynn had her own room. She wasn’t in a bassinet, and she was not fat or pink. The nurse was friendly, but not smiling. I was afraid to touch Brookelynn. She had tubes and wires and there were monitors. She was on a breathing tube, a feeding tube and she was being closely monitored by the nurses. Her small abdomen seemed to struggle to rise and fall. She slept, she didn’t cry. She seemed completely unaware of this terrifying place where sick babies came to grow bigger.
I didn’t hold her on that visit. I just stared at her, and willed her to live. I prayed and choked back tears. My precious little girl was fighting. She was born fighting. The nurses joked about how she was throwing them attitude already. They tried to comfort me the best they could. My medicine was making me tired, and I needed to rest. I retreated back to my room. I didn’t want visitors. I wanted to think, I wanted to cry, I wanted to pray in peace. But people came anyway. They probably were keeping me from falling into the dark hole of depression that I was circling. Later that night Chris rushed into the room with a promise from the nurse in the NICU that I could finally hold her. He gathered me into my wheelchair and took me back into what I thought must be the scariest place on earth.
Holding her for the first time, however, was not scary. It brought me a peace that I had been waiting to feel. Even though she was very small, I could feel her heart beat, I could hear her breathing, I felt the rush of peace in my heart as I continued to pray and thank God for every breath of life that He breathed into her. Holding her was peaceful and quiet and perfect, but brief. Again, my pressures kept me from feeling like myself. I wasn’t quite out of the woods yet. I went back to bed that night and slept with much more peace.
After another couple of days, the trips into the NICU became less scary; more routine. I was moved into a recovery room, but I continued to struggle with my high pressures. The nurses were still limiting my ablity to come and go. I did my best to hide my tears behind smiles and gracious gratitude for the women who cared for me. I continued to recieve visits from loving friends and family.
I was grateful for the distractions, but the grief was just being burried. The guilt I felt over my daughters early delivery was eating at me from the inside. At one point I went into the shower, I sat down and I cried hysterically. I’m pretty sure Chris was on the verge of calling the psyche ward. The trauma of my near death experiance, coupled with the overwhelming feeling that somehow it was my body’s fault (my fault) that my daughter was in that room, in that box, fighting for life. It needed to come out, I needed to fall to pieces. I was probably in that shower for a good 30 minutes. I cried on and off most of the day, trying to convince my incresingly worried husband that I was fine. I was dealing with PTSD.
Lucky for me, I have Jesus in my life. I became the biggest prayer warrier that I could be. I spent hours and countless days searching scriptures and praying for the Lord to be with me. More importantly, I prayed for the presence of Jesus to be by my daughters side. I did my best to imagine the image of Jesus standing over her. Keeping watch. I didn’t just pray for a “guardian angel” to watch over her, I prayed for Jesus Christ himself be with her. It was the one and only thought that made going home without her a few days later barable.
The day we packed up the car and started to head home, I knew we had a long road ahead of us. The hospital where Brookelynn was at had rooms for us to stay in, if we needed to. But they encouraged us to go home and develop a routine of coming and going. They explained that staying inside the walls of the hospital would start to mentally break us down. That I needed to be able to step away from it all. So as I stared out the window at the hopsital and we drove away, the tears came and fell in a steady stream. Chris kept insisting that we could turn around, that I could go back and stay with her. But, I willed myself to go home. I needed to sleep in my own bed, I needed to establish a routine for my two sons who were already sacrificing so much for their little sister already. School would be starting soon. We had just recently moved so it would be a new school for them, with new friends to make. I needed to be there for them too. So like the nurses said, I developed a routine.
Every morning I woke up, got the boys ready for school and to the bus stop. I got in the car and drove to the hosptial, trying to make it before 10am each day for rounds. I always wanted to be there for when the doctors came into her room and gave a progress report. Some days I wondered if it was a good idea for me to actually be there for this. I was always hoping to hear progress, and most days there was something good to report. Some days there was no change. On the days where there were set backs, those days were the hardest. As a parent, you want to blame someone or something. You want to know WHY your baby isnt getting better. So badly, you want to point at something and say “If we had fixed THIS she would have gotten better.”
On Day 60, I finally had my first meltdown. I had stayed pretty much half the night with the baby the previous day. We had watched the first Colts football game of the season together. I think it was about 1 am when I finally drove away. She had been having a good day. No setbacks. We had been trying to ween her from her oxygen. This is an incredibly daunting thing for any family in the NICU. Any preemie parent can attest, weening your child from O2 is probably one of the most frustrating experiences. It’s one of the last hurdles to overcome. It’s also (usually) the very last piece of equipment that indicates to the world that your baby is different. She had been taken down to the very least amount of flow that she could be on before they’d turn it off completely.
But that next morning when I came in, her flow had been turned back up. She had some sort of setback. Fustrated. I searched for my nurse for an explanation. Instead of finding one of my NICU nurses watching over her, she had been assigned a nurse who had floated in from the PICU. She told me she wasn’t sure what happened and didn’t offer any further assistance. She, of course, had no idea how fustrated I was. I had only been gone for a few hours, how could she have had a setback so quickly? I went to find a Doctor myself since the nurse didnt offer to. When I finally found her, I fell to pieces. I cried, I yelled, I blamed the fact that after 60 days I was STILL seeing new faces. I insisted THIS was why she had her setback. Of course, it wasn’t. But I needed to focus my fustration on something specific. This, apparently, was what I picked. After my major freak out, I was only assigned nurses I knew. I was beyond grateful. But I was also beyond embarrassed. I never talked to people like that. I was always polite and kind. Lucky for us all, I didn’t have any more episodes like that one again.
The next 15 days flew by. It seemed like after that setback everything moved pretty quickly. All of a sudden, we were trying new things. Nursing her, feeding her bottles, her O2 came off – FINALLY! She was moved into a bassinett. She was using a swing. We were really making progress! I knew our time was potentally coming to an end as we got closer to her due date. Nurses were using phrases like “when you go home” and I was starting to get nervous.
What you don’t anticipate is the love you start to have for your nurses and doctors. You don’t view the NICU as this scary, unknown place anymore. Its more like your home away from home. A long NICU stay means you have more time to get to know what all the monitors mean, you know everyones name and if they live close by. If they have kids, husbands, dogs, or cats. You bond. More importantly, you start to see what it takes to care for a preemie around the clock. Nurses do not sleep. They take shifts. They do not tire, they never stop watching. The monitors never are turned off. At home I don’t have a nurse or a monitor. You start to question if you can do it. What if something goes wrong? What if she has an episode? What if she gets sick! All of a sudden, your dream goal of your baby coming home seems scary. Now HOME is the new scariest place on earth! Its the new unknown.
I can proudly say I have sucessfully kept my preemie alive and well for a little over a month! She hasn’t had an episode, she hasn’t gotten sick. She has grown from 2lbs 10oz at birth, to 5lb 2oz at hospital discharge, to now an 8lb 5oz baby girl. She has thrived and has been the biggest blessing. I find I’m more protective of her than I ever was with my two boys. I’m not sure what it is about her. Maybe it’s because she’s a preemie. Maybe it’s because she’s my only girl, or my last child. But my motherly instinct is stronger. Our bond is closer. I can’t say I’m GLAD we had such a tough road. But, I can see how that road we traveled led us to a better understanding of the words “count your blessings”.
I wanted to write out Brookelynn’s story for a few different reasons. First, because I think it’s important to document the experience. Second, because I want people to know how common preterm birth is. Before I had Brookelynn I had no idea that 1 in 8 babies are born premature. If you are someone this is happening to right now, I want you to know you’re not alone in this journey. The feelings you are feeling seem all wrong. When you have a new baby, you think you should feel so happy and that you’ll have this amazing birth story to share. Having a preemie is hard. It’s ok to feel sad, it’s ok to grieve the experience you didn’t get, and it’s important to know – everything will be ok!
If you’d like your story to be a part of our Prematurity Voices series, email your story in a Word document along with one or more photos to firstname.lastname@example.org.