1 Pound 7 Ounces: Life After the NICU.
The Newborn Intensive Care Unit. There are so many things I can tell you about the NICU. I guess I should start by saying it is the most overwhelming place a new mom can be. Your first question after delivery is usually, “Is my baby okay?”
Due to complications that placed my son and me in danger, my son Mark was welcomed into this world on September 12, 2018, by emergency c-section. He weighed just 1 pound and 7 ounces. He was 12-and-a-half inches long. His legs and torso were smaller than a liter bottle of Coca-Cola, and his first footprint was just smaller than a nickel. Mark came into the world at 27 weeks and 4 days. His lungs were under-developed so immediately after delivery, I had a quick peek and he was whisked away into the NICU.
The first time I saw Mark since meeting him in the OR, he was 36 hours old, on an oscillator, in an incubator, getting light therapy, and on reverse isolation. I had to wear a gown and gloves just to sit in my wheelchair and look at him. I cried, endlessly. I felt so much guilt, and hurt, and sadness. My heart was living outside of my body and in this box. He had a machine violently shaking his chest to help keep his lungs open, breathing for him. This was not what I had planned.
Pregnancy is supposed to be one of the most unique times of your life. It is also very planned. You go to doctor’s appointments, and then you go to the hospital to deliver and follow your birth plan. You may even get to hold your child after they are born. Some mothers choose to wear cute matching robes with their child’s bow or hat, have visitors at the house, and do newborn photoshoots. But, between picking out names and deciding on nursery decor, do you ever take a moment to stop and think about what happens if things become different than you expect?
In the NICU, your first question will likely be, “When will I be able to take my baby home?” I think this question was on my mind daily. You should know that you should plan for your child to come home around their due date. When your child goes into the NICU, you are met with a whole new world full of challenges that will test you, shake you to your core, terrify you, but make you stronger.
Sometimes you don’t get to see your baby with your own eyes for 36 hours after they make their entrance into the world. You may not be able to hold your child until they are a week old. In my case, over a month old. You will experience loud alarms for oxygen saturation, respirations, and incubator temperatures. Words like NG, OG, G-Tubes, Brady, NEC, VSD, and blood gases become second language. You will watch your child have heel sticks and art-line changes. It will break your heart.
When they are so young and so under-developed, you can’t comfort your child the same as you would a full-term baby. You hear talk of vancomycin (a very strong and nasty antibiotic), fentanyl is no longer a street drug you hear about on the news (it’s a sedative used on your child to get them to lower their heart rate), and PDA no longer stands for public display of affection.
Sometimes you have to wait days, weeks, or even months before you can even think about seeing or putting your little one in a cute onesie for the first time (it’ll likely be a little too big) and it will feel like they will never grow into it.
The bad days are there. The fears. The scares. The guilt. The “not knowing” and the feeling of not being able to help is there, too. The guilt of not being stronger or able to keep him in your body to grow. All of those feelings are there. But there are so many incredible moments you experience in the NICU that you won’t get to experience anywhere else.
Even though you can’t stroke your baby’s head, you can gently place your hand on them. You can talk to them. You can read to them. You get scent hearts and you can place them in your shirt throughout the day and give them to your child when you come to visit. Just so they can feel a little closer to you. You are given the chance to do “cares” on rounds with the nurses. You check your baby’s temperature and change their diaper (and weigh the diaper, too). If you’re lucky, you get to do cares while the nurse gets your baby’s weight. This is what most goals and milestones are based around in the NICU.
You get to meet the team of doctors and nurses who care for your little one. They become your lifeline, and ultimately your family. You may not get the opportunity to breastfeed, but you are always welcome to pump at the bedside. In fact, it is encouraged. You start moving away from the scary words and get closer to things like DART protocol (no more ventilator!), PO challenges (no more feeding tube!), car seat test, support and networking with other preemie parents, and eventually discharge and graduation.
What makes this all so rewarding is you go into the hospital and come out as a mother to this new life. You aren’t just a normal mom though. You are a mother who witnessed your child’s strength every single day. You know your child’s health, medicines, treatments, and diagnosis better than any old parenting blog or magazine. You become your child’s greatest advocate in all things. Through the NICU, a unique bond is formed earlier (sometimes) than a full-term baby and mother. You watch. You learn. You listen. You wait. You protect. You advocate. You fight. You go into the hospital ready to have a child, and you leave as the parent of a hero. Being a NICU mom has been the hardest thing I have ever had to experience, but it has been the most rewarding experience by far.
Mark was told he would never be able to walk, talk, or do much of anything for himself. We have three therapy appointments every week, at least two specialist visits a month, and regular follow-ups with his primary care provider. Because of the NICU, his care team, and his resilience, Mark is a happy, loving, and kind little boy. He is walking, talking, and exploring life every day. He just celebrated his 2nd birthday, and we owe the first one, with everyone after that, to the NICU.