I fully believe that living for the future, rather than focusing on your past, is the best way to go about life. I am proud of the tough moments I have gotten through and credit them in who I am today. But those tough moments are not what I choose to stay rooted in. I do not touch on this topic often, but since I am in the thick of these emotions, I thought I would. Because for me, when it happened, I personally knew nobody else that had experienced it. Even though the reality is, many do begin their journey into motherhood this way. So if I could help bring any reassurance, for those going through it or who know someone going through it, that is my purpose with this singular post.
My Welcome to Motherhood
For many that have followed my motherhood journey from the start, you know the beginning was anything but the ordinary. Our first son arrived unexpectedly at 32 weeks and 4 days- no known cause. Born a large 32-weeker, at 4 pounds and 11 ounces, our son was about to give us the experience of a lifetime. His premature birth led us into a 34 day stay in the NICU to allow him to catch up in growth.
As we have rounded these final weeks in this pregnancy, and much like each pregnancy after his, the anxiety of another potential NICU stay floods my brain.
While we were enjoying our time out in San Diego, we had just passed our son’s delivery gestation and Phil said, “imagine if…” and I knew exactly where he was going. I shut down his thought quickly because it was already a thought lingering in my head the entire trip. Naturally we still talked about what we would do (because we’re both a little too dramatic of ‘what if’ planners) and the thought of leaving me out there until the baby would be ready to come home, missing out on so much for my babies at home, I could not even begin to imagine. Luckily, we made it back home safe, sound, baby still cooking.
But that’s the reality of NICU trauma. You live on constant edge during your pregnancy and sometimes beyond. Will things happen too soon? If so, how long-lasting will the effects be? How do we plan for that stay with other children to care for? Will the baby be big enough, strong enough, healthy enough? I have to trust my body won’t do this early again, how?
The Beginning of Our NICU Journey
I can distinctly remember our first day in the NICU still being filled with happiness and gratitude for our son’s birth. None of it had hit me just yet. I had already been hospitalized for three days leading up to his birth and another two following. So, the hospital just became ‘home’ at that point. It wasn’t until we left the hospital that everything began to hit me. And the first day back to visit him after being discharged is when I distinctly remember how crazy it all was. The constant monitors beeping, the inability to take your eyes off of the heart and oxygen readings, the emergency alarms going off, all of it became overwhelming very quickly.
With our son being born almost 7.5 weeks early, what ultimately led to his stay was his need for extra time and supports to strengthen and grow. He was experiencing a difficult time breathing on his own at first, high bilirubin levels, a cyst on his brain, and Brady’s- where his heartrate would plummet due to shallow or slowness in breathing (ultimately, these are what sent me in a downward spiral more times than I could count).
Daily Life in the NICU: Milestones, Progress, and Declines
I remember being there nearly all day- from the moment I woke up until late evening. Many times leaving briefly to pick Phil up after work just to head back. I struggled with doing anything other than being there- I’d feel guilty, I’d want just to be there with him.
Visiting hours for parents were 24/7 at the time, with only two additional visitors allowed. Visitors had to be cautious with illnesses, etc. and were required to wash their hands upon arrival. When we were there, we were extremely hands on. The nurses would wait (when possible) to allow us to feed, change, and bathe him. Otherwise, our daily routine consisted of a lot of cuddles, feeding tubes, monitor beeps, and hopeful thoughts that the days would end soon.
“Two steps forward and ten steps back” was our entire experience in the NICU. Our son would get his breathing down for a few days, come off of the cannula, give us hope, only to be put back on. He had to go five consecutive days without his heart rate and oxygen plummeting, those damn Brady’s- he’d go two days, starting our countdown, have an episode, and back to square one. It was a constant up and down rollercoaster the entire stay.
The one moment I will never forget, which truly left me feeling more than scared, was a Brady that happened in my arms. I was holding him for hours on end and before I knew it all of the monitors were going off. The emergency monitor sounded and four nurses came running in. His heart rate dipped down into the 40s, his oxygen was plummeting, and he was turning blue…in. my. arms. And had it not been for those monitors, I wouldn’t have even known it. They began shaking him, signaling his brain to take a breath and when he did, everything began to stabilize again. That’s a Brady. And that was the most intense one we had experienced. But that’s all it took. All it took for me to realize I was completely useless in helping my newborn baby. There wasn’t anything I could do to help him grow, to stop these from happening, to get him out of there. It was all time and natures plan.
It was also in that moment I realized the reality of our situation. That at some point I’d be taking this barely 5 pound baby home. If that happened here, what could happen at home? Without monitors? Without nurses? Without the beeping to alert me? I’m awake. What will happen when I sleep? Do these episodes actually just “go away” with growth? It was after that moment that the trauma of the NICU and what our first year as parents was about to be.
Support Systems
Family and friends were a huge support system. Checking in on us, offering to help with things outside of the NICU, visiting us, and we appreciated every second of it. Ultimately, a time came where I asked that nobody else come to visit. As the days dragged on, I became more and more overwhelmed. I did not want to share the limited time I had with him with anyone else- not even Phil most days. The NICU staff were absolutely, without a doubt, the most wonderful people on the planet. NICU nurses are truly under-appreciated. They are the Saints of the world.
For those knowing someone going through a NICU stay, the best way you can support them is by asking them directly what they need. I know, for myself, it changed drastically from time to time. One day I didn’t mind people checking in and asking how he was doing. Other days, especially as Christmas and New Year’s approached, I wanted nobody to ask about him. I was over talking about it. Progress felt minimal, time was frustrating. In some moments, I just needed space. Constantly being flooded with highs and lows was emotionally exhausting and I did not know what I needed from my support system.
In the reverse, if you are someone experiencing a NICU stay, I can assure you of one thing: it will come to an end. Those days are long. The emotions are difficult. You feel helpless, useless, clueless, confused, frustrated, all at once. And people will, in the most innocent way, try to shed some light on a shitty situation. I can remember how triggering some words had been. Being told, “at least you have time to sleep through the night now” or from someone else pregnant at the time, “I cannot wait to have my body back to myself.” When I, in fact, would have given anything to be waking up all night with my newborn or to have him growing back inside of me where he should have been. Forgive them. Forgive their words. They are coming from a harmless place. Move with grace during this time, not only with yourself and your own emotions/reactions, but with others as well.
Reflecting Back Today
After three years of follow up appointments after his stay, visiting therapists and specialists, our son was dismissed from them all. The most he needed was a summer of speech therapy which could be of no correlation to his premature birth. At six, you would never even know he had the stay he had and we experienced what we did as first time parents. It made us resilient and also grateful for all that we have. Their health, their growth, and the overall blessing our children have brought to our lives.
And that right there is the biggest reason I don’t look back on this moment often. I remember it, every detail, every emotion, but what I refuse to do is let it define any part of our story and especially not his. What defines us and him is his determination, his high-strung spirit, his smarts, and all of the success he is bound to experience through the next steps in life.
If you’re currently in the thick of a stay, keep strong- there will be a day those days are long behind you. Who else has experienced a NICU stay? What helped you mentally and emotionally get through it?
