NICU Awareness | Boca Raton

September is NICU Awareness Month.

The NICU, or Neonatal Intensive Care Unit, is the unit of the hospital devoted to caring for critically ill newborns and infants.  We are all familiar with the ICU. Simply put, this is the ICU for babies. If you or someone close to you has never had to experience the NICU before you have probably given it very little thought, if at all. I know I didn’t. Of course I knew about the NICU and how they took care of sick and premature infants.  I saw the yearly March of Dimes fundraisers at Publix and would donate a few dollars here and there. But I never could have known, never could have understood the rollercoaster that is the NICU until we rode it.

They call it the “NICU rollercoaster”. The only rollercoaster I can say I never want to ride again. The emotional ups and downs of having a preterm or sick infant are indescribable. Every day brings new challenges and new fears. If you are lucky it also brings new advancements and improvements.  You have heard the term one step forward, two steps back. The NICU takes this to the extreme. Highs shifting to lows in a matter of moments and vice versa. Days starting in tears and ending in smiles. There truly is no way to describe it and I am usually ok with that… you see I don’t like talking about this experience. It triggers a very scary time for me. My anxiety levels increase, my unresolved PTSD rears its ugly head, my heart sinks and I instantly remember the constant fear of losing her. But today I will share what I can with you. Why? Because it is NICU AWARENESS Month. It is up to those of us who have lived it to raise awareness about life in the NICU, whether that be for the babies, their families or their medical care givers.

Six years have passed since I gave birth to my daughter 8 weeks and 3 days prematurely due to an undiagnosed placental abruption.  I went from having what I thought were Braxton Hicks contractions during a conference call at noon to having an emergency Caesarean section less than 12 hours later.  I arrived at the West Boca Medical Center triage area to get checked out. I was told I had a slight fever and was given a saline drip. Dehydration maybe? A monitor was strapped to my belly… that had only recently started to show. I stared at the screen, confused and scared. I have heard of Braxton Hicks, but are they supposed hurt like this? The screen didn’t budge, there were no peaks or valleys. I didn’t understand any of what was going on. I recall my husband arriving from work as I sat in the bed, tears streaming down my face. I told him that they said I was not in labor. But if this was not labor than something was seriously wrong.  I was told that they could not release me because pushing fluids did nothing to bring down my fever. They decided to admit me and upstairs I went. Terrified, in pain and no closer to understanding what was happening. Once in my room I met my new nurse, whose name I now wish I could remember. She listened. She heard me and that is when things got interesting.

On the hospital monitors, no contractions were being recorded. I asked the triage nurse to move my monitor as I was carrying this pregnancy very low. She informed me that monitors are placed on the top of mom’s belly and that it was positioned properly to gather the data they needed. My new nurse was different. She heard my plea and she moved the monitor as I asked. Maybe she knew it could in fact be reading incorrectly as placed, maybe she just wanted to prove to me that all was well, maybe she just wanted me to calm down and stop panicking. Whatever the reason she moved the monitor for me and low and behold the machine lit up like a Christmas tree. I was having steady contractions, less than two minutes apart. I knew it!  I wanted to scream. I wanted to shout - “See I am not crazy. I have been feeling this for hours. I am validated!” For a moment there was relief. This is normal, this is just labor! Then reality hit. This is not normal, you are in labor over 8 weeks early.

The next couple of hours were a whirlwind of panic, fear and uncertainty. My nurse checked me and discovered I was 3-4 cm dilated. I was immediately given magnesium to help stop the contractions and steroids to help build up her lungs. We remained optimistic that the laboring would stop. I remember my husband leaving to relieve my mother who had been watching our older daughter for us. My nurse came in often, constantly reassuring me. The contractions seemed to slow. Maybe, maybe not. I was still optimistic. Then the intensity of my contractions increased. I remember thinking, ‘this is what epidurals must be made for!’.  But that isn’t for me. I can’t have an epidural. I am not even in labor. I am not having a baby today. The pain of each contraction arriving in constant waves. I never knew the human belly could harden so much. I tried breathing, moaning, grunting. Nothing made it any easier. It was shortly after 9:00 PM when my nurse came into my room to find me white knuckled holding onto the sides of my hospital bed. I could see the pity on her face. She didn’t think I should be in this much pain at this point. She didn’t want to perform another internal exam as you risk infection, but she said she had to so she could figure out what was going on. The nurse checked me, left the room without a word and came back seconds later with a cordless phone. She handed me the phone and my OB/GYN was on the other line. “Get your husband back to the hospital” he said, “You’re having a baby tonight”.

I remember being told by my nurse that I was 9 cm dilated and that the magnesium they gave me in hopes to stall my labor had failed. My mother, not even home yet, turned around and came back to watch my daughter. My husband rushed back to my bedside and I was prepped for surgery. I remember joking with my doctor, as only my nervously awkward self could do. “You let me get to 9 cm unmedicated, can’t you just let me go the rest of the way?” Of course I knew this wasn’t an option, but I will admit an epidural after enduring all of those hours of pain was a bit of a kick in the teeth. My little came into this world fast and furious and she hasn’t slowed down since. Born at 3 pounds 15 ounces I remember the fear that I felt when I saw her for the first time. The fear. Not the joy, not the excitement, the fear. She was so little. It was surreal. I saw her for a moment. And just like that she was whisked away to the NICU.

It wouldn’t be until the following afternoon that I could physically see my daughter again. Due to the epidural I was not allowed out of bed and she was not allowed to leave her isolette. The NICU nurses printed a picture for me so my husband could bring it upstairs and I could try to start pumping. I will never forget the way I felt when I saw this image for the first time. To this day I have a hard time looking at it, but I am thankful they did the best they could to connect me with my child.

Once I was able to get out of bed, I made the first of hundreds of trips I would make to the West Boca Medical Center NICU. I learned about the importance of scrubbing in and wearing sterile protective gear when entering this unit.  I was introduced to isolettes, personal newborn beds that help the infants keep warm until they can regulate their temperature. Monitors and alarms like you have never seen. They are everywhere. Heart rates, oxygen levels, respiratory rates and body temperature. There is always something to be monitored. Seeing your child, any child, hooked up to all of these machines and tubes can be very overwhelming. And with each alarm, each unusual beep, your heart rate can’t help but to increase as well. Blood tests, hearing tests, retinopathy, brain bleeds… there is so much that goes on in the NICU.

On day two she was taken off the ventilator. That was such a relief. On day three she developed jaundice and they started phototherapy. This was also the day I went home. Alone. No one can ever prepare you for that. Having a baby and leaving the hospital without them in your arms is surreal to say the least. I was scared, sad and nervous. But there was little time to “feel” those feelings, I had to get back to the NICU. Day four they removed her Umbilical Artery Catheter and she was given her first feeding of breast milk via a feeding tube.  Day five I spiked a 103 degree fever. The infection from the placental abruption which caused my preterm labor was now making me sick. It would be another six days before I would be permitted to enter the NICU. I remember my first day back. I walked in to see your nasal cannula had been removed. You were no longer wearing an eye mask and having phototherapy. I was there for your weight check. My baby weighed in at 1660 grams. Did you know that preemies are often so small they are measured in grams. I didn’t. Nor did I know how much each gram of weight gain would mean until I saw these tiny humans first hand. For those who are wondering, she was 3 pounds 10 ounces, down 5 ounces from birth. Day 11 was a good day. It was the first day I was finally able to touch you. I changed your first diaper, fed you via your feeding tube (a whopping 5 ml of breast milk) and even got to give you your first kiss. It was 16 days before we held our daughter. I get goosebumps as I type that. Sixteen days! Over two weeks of watching her through her isolette, longing to feel her close to us. Day 16 was an amazing day. Our journey continued with ups and downs for another two weeks and we were one of the lucky ones. Our daughter was what they call a “Feeder/Grower”. She thankfully had no lasting issues from her preterm birth. She had to grow and learn to feed and regulate her temperature. It would be 25 days before my daughter came home. There is no feeling to describe the pain of spending nearly a month without your newborn. Nor is there a way to describe the joy you feel when you finally get to bring them home. The doctors and nurses of the West Boca Medical Center NICU took care of my little when I was unable to, in ways I never could. I am eternally grateful to all of the doctors and nurses who devoted their days and nights to keeping my little miracle and all those other little miracles safe.

The time and care devoted by the team of the NICU is immeasurable. If you never lived it, you could never know. I know I didn’t. So this month for NICU Awareness Month, I am doing my part to raise mindfulness about the importance of the neonatal intensive care unit and to honor the families who are riding or have ridden the rollercoaster and the health professionals who care for these warriors day in and day out.

Thank you for listening to my story.