4 Things I've Learned as a Preemie Parent

 

Sometimes I can still hear the beeping of the monitors, the sound of the nurses trudging up and down the hallway, and the gentle cries of my little one protected within the walls of a medical incubator. I’ve visited this place of “preemie parent” for both of my children - two special NICU warriors. It’s hard to put into words the emotional turmoil for a parent of a premature infant; nothing can prepare you for it, and nothing can quite describe it.

While I had some anticipation for a NICU stay for both of my children, their journeys to delivery were unique in their own way. My son, who is now almost 5 years old, was born at 32 weeks gestation and spent a little over two weeks in the NICU. More recently, my daughter was born at 29 weeks gestation this summer and spent 67 days in the NICU. I believe I was naive of what to expect with a premature delivery when my son was in the NICU. I still remember feeling like I had to shower, dress nicely, fix my hair, put on some make-up, and stay at the NICU at his bedside every single moment I was allowed. When my daughter spent her seemingly endless weeks in the NICU, most mornings I donned the same pregnancy leggings and oversized sweatshirt to make the 40-minute drive to sit for a few hours at her bedside before heading home to sleep. You live, and you learn.

Besides being a preemie mom, I am also a pediatric physical therapist working in Early Intervention services. Most of my caseload is premature infants, and I frequently see the risk of delays, difficulties, and medical complications these kiddos face. I have witnessed first-hand how these families struggle emotionally, financially, and sometimes physically with the burden of caring for a premature infant. These realities ran all too rampant through my mind as I sat in the cold, vinyl hospital chair watching my babies fight for their lives.

So, as I reflect on my time as a preemie parent and as a physical therapist to our preemie warriors during our month of Prematurity Awareness, I have settled on four important ideas I have learned and wish to share with you.

1. I am strong

Both of my pregnancies were rather complicated. My first pregnancy was a breeze until 26 weeks when I went on bedrest for premature labor. 6 long weeks later, my baby boy was emergently born at 32 weeks after going into distress. When I became pregnant with my daughter, we anticipated another difficult journey. I had a cerclage placed at 18 weeks gestation after already showing signs of premature labor. I then spent the next 6 weeks at home on bed rest, and at 24 weeks gestation, my cerclage began to fail. We anticipated a delivery any day, so I spent the next 5 weeks in the hospital. She came emergently at 29 weeks after a uterine infection was detected.

When I tell my story, I tend to focus on how traumatic the births were for the babies. And they were, but I often neglect the trauma that I went through with both deliveries: extended time in bed, infections, isolation in the hospital because of COVID visitation restrictions, and the mental stress of not knowing if my baby will survive, not to mention the physical trauma of the pregnancies and births. A close friend of mine was always so gracious to remind me of how strong I was and to embrace the trials I had endured to bring my babies into this world. I make it a point to share that same encouragement with the families I work with who have been through similar difficulties. Pregnancy and motherhood are not for the faint of heart; it takes a special mom to sacrifice her body and health for another person, sometimes more than once. I am strong. You, Mama, are strong as well. Don’t forget that your baby would not be here without you. And to the rest of the family of these special kids and super mama, you are strong, too.

2. My baby is strong

The first time I saw my daughter in the little incubator, connected to all the tubes, wires, and monitors, my heart broke. She was so tiny.  A mere 3 pounds 4 ounces of huggable joy lying there fighting for her life. Day after day, week after week, she endured countless probes, pokes, and procedures. Her muffled little cries from inside the plastic box keeping her warm echoed in my mind those first few weeks. I watched her little body fight for every breath, try to move under the weight of all the medical equipment, and struggle to grow ounce by ounce each day. This sassy little girl was quick to let everyone know her intentions and preferences. While she had a relatively low medical complexity while she was in the NICU, she nevertheless amazed me with her large will to live.

When I work with babies who have gone through much longer and more tumultuous journeys than my own children, I can only imagine the lives they will lead and the impact they will have on those around them. What an amazing opportunity we have to see their boisterous personalities come forth so early in their little lives. And to those families of babies who may have had a different ending to their NICU stay. I offer my deepest sympathies and hope you can cherish the moments you may have had with your little warrior. The bravery of these mightiest warriors is unmatched, in my opinion. Your baby was strong, too.

3. It’s okay to cry

I wish someone would have given me permission to cry when we first had issues with my son. There are so many expectations for a strong mama to rise to the occasion when her child is struggling. I remember putting on my makeup and brave face each day I was in the bed with Hudson. I smiled through the days of lying in bed, laughed with the nursing staff, and kept up light-hearted conversations when friends and family came to visit me. I held in a lot of the sad emotions until I finally broke down after his delivery and during his NICU stay. I cried continually, releasing all those pent-up emotions I had stored for over two months. While some days I didn’t feel the need to cry, I made it a point to find simple ways to express my emotions; I journaled, wrote notes to my babies, and sent up many prayers for the protection and comfort for my baby.

As a physical therapist working with families who have endured the trauma of a long or short NICU stay, I provide them room to grieve. No parent wants a NICU stay for their child. No parent wants to see their child sad, hurt, or alone. Each family must have that time to grieve what “normal” path they anticipated for their child. It’s okay to mourn over what could have been. It’s okay to want a different path for your baby. I encourage families to find a support system to help them through those trying times. So, if you’re reading this and are a NICU parent or family, I hope you find space to cry, to mourn, and to take the time you need to reset your focus in caring for your dear little one.

4. Milestones Don’t Define Your Child

When I evaluate a baby who has a history of prematurity, I anticipate the family has a lot of questions regarding the trajectory of their progress. When will my child do this? Will they ever be able to do this? I always tell them, “I wish I had a crystal ball.” I wish I could give them the peace and satisfaction of knowing what to expect in the future. Sometimes waiting for those big milestones can be treacherous. Sometimes those big milestones take longer than we anticipate, or they may seem so far out of reach that it may be near impossible. It is so easy to compare the journey of your child to those of similar ages, older siblings, cousins, and playmates. I had the same concerns when my son was born. I became engulfed in checking the boxes of his developmental skills that it sometimes consumed me. I often compared his progress to other kids I knew and waited anxiously for the moment I could brag on his performance to our family and friends. Looking back, I missed out on enjoying a growing child learning about the world; I would not want the same for you and your child.

When I work with children who are challenged by the next milestone, this is my advice for the families: When you feel overwhelmed by the mantras of “can’t”, “won’t”, and “still aren’t”, just pause. See your child for who they are in that moment, not a checklist of milestones, capabilities, or even disabilities. Meet your baby where they are today. Then, go after it; challenge them, cheer for them, advocate for them, and push them to the next best thing. It may be a short or a long journey to that goal but embrace the adventure it brings.

As a physical therapist, I use my medical viewpoint to look at each baby with the objective to use his/her strengths to improve upon the weaknesses. I work on movement, strength, mobility, and independence for the child to engage in life to the best of his/her ability. It’s easy for me to get caught up in the rigor and structure of each session. The medical perspective can sometimes be burdensome and disconnected from the true needs of the family. So, I breathe. I take off the physical therapist jacket, and I put on the spirit of a mom who has been in your shoes. I see the heartache, the struggle, and the ultimate fight. I see the family. I see the child: the bright, bold, and determined personalities of our NICU warrior.

So, if you’re on this same journey, I hear you. I feel your grief. I understand the emotional rollercoaster each day holds watching your little angel fight for his or her life. I support you in your struggle to find stability in this crazy season of life. See your child for who they are today. It’s okay to cry when it gets hard. Your baby is strong. You. Are. Strong.  

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Haley McDonald PT, DPT is a Board Certified Pediatric Clinical Speacialist and Owner of Pathway Pediatric Therapy Services. You can follow Haley on Socials @pathwaypediatrictherapysvcs or at  www.pathwaypediatrictherapy.com