Navigating Parenthood: Lessons from the NICU Journey

Infusion pump on a bedside table with toys and decorative items nearby.

This is what they use in the NICU for babies that are on feeding tubes. I remember first seeing them use it and having NO idea how one worked, what buttons they were pressing, and why. I also remember learning to use it! That was considered a milestone. Now, the real race is trying to make sure you turn it off before the beeping it makes, wakes the baby you just put to sleep… if you can reach it from where you’re sitting with him. Little did we know, he would be fed through NG Tube 4 months later…since then, we have learned to use an entire new type of pump that feeds our son and gives him the nourishment he needs to stay alive.

Medical monitor displaying vital signs and waveforms, including heart rate and blood pressure readings, with annotations about understanding emergencies.

All the hospitals I’ve been in and never knowing what Tachycardia, Bradycardia, or Asystole meant until your child’s monitor is going off, sending you into a full-blown meltdown. Also, figuring out what “A/B/D Episode” meant in your MyChart Notes: Apnea, Bradycardia, & Desaturation when they referred to the time your childs oxygen saturation plummeted. There was a silver lining though, you slowly learned when NOT to panic because a lot of the alarms were just because your baby is moving around or crying. Also always keeping an eye on other parents child’s stats… silently panicking when THIER monitor goes off as well. It’s not just one of us, its ALL of us.

A hospital nursery room featuring a modern crib with bedding, medical equipment in the background, and a supportive environment for newborns.

Walking in for your daily visit with your child in the NICU and seeing this for the first time, was actually a HUGE milestone! It meant your child has “graduated” from a warmer to be able to be sufficient in a “regular crib”. It doesn’t mean any less wires of course, it just means you have to learn how to manage re-learning how to pick your kid up and put them down WITH the wires, just in a whole new way. For parents like us, this was a win!

A city view featuring the skyline of Boston with a focus on tall buildings, accompanied by a sign indicating directions to Boston Children's Hospital without GPS.

I am born and raised in Massachusetts. I have been to Boston many times when I was growing up. I remember before Johnny and I became pregnant with Gio, I always used to say I miss going into Boston and we should go sometime! Well, I got more visits than I asked for. We have been driving to Boston every day for 4 months, never in my life would I have thought that I would be able to travel into the Boston chaos and traffic AND know exactly how to get to my destination without needing my GPS! We have gone so much that I even know which lanes sit and which ones don’t!

Close-up of surgical tape and gauze on skin, illustrating a healing wound with accompanying text reflecting emotional sentiments about the experience.

This wasn’t the plan. I never understood the “beef” between C-Section vs. Vaginal Delivery; I have never discounted either side no matter what side I stood on. I was always terrified to have a C-Section; I gave grace to anyone who has been through that! The procedure itself scared me and the downtime it takes for healing scared me, because I had a Type 1 Diabetic daughter at home who needed me. Life had other plans for me this time around…Gio ended up being an emergency C-Section- life or death. I wish they told me an hour earlier that I needed one, I didn’t care if you had to cut both my legs off if it meant my son would be safe. Instead, he came out and wasn’t breathing. He had to be resuscitated and was quickly taken away from me and sent to the NICU. This scar reminds me daily of everything that happened that day- 4 months ago feels like 4 hours ago memory-wise. I see this scar at home every day, what I don’t see at home… is my son because he is still in the hospital.

A child looking out a window, appearing contemplative, with reflections of a sunset visible. The focus is on the child's expression, highlighting feelings of missing summer vacation and the impact of being away from a sibling.

This one kills me. That is my 10-year-old daughter, she is a Type 1 Diabetic- her life is hard as it is. This was her looking out of the window in the break room when Gio was in the NICU the first month of his life, I hope one day she knows her sacrifices were noticed. I have always wondered what was going through her head in this moment. I missed her Elementary School graduation because it was the day after my C-Section. Then she continued to spend just about every day of her summer vacation with us at the hospital visiting her little baby brother that she was so excited about. Being a diabetic comes with its own weight, now having to share that with her brother who also has medical complexities, adds more weight than she can hold some days. She will never know how proud I am of her, no matter how much I tell her.

A close-up of a sleeping baby with a pacifier, appearing exhausted, while a blurred person is seen in the background resting in a hospital setting.

The driving, the walking, the late nights, the emotions of having this feel like a never-ending reality just takes everything out of you. Some days it would be his exhaustion, and some days it would be mine. You find comfort wherever you can, and when you can’t, your body will rest when it needs to and you won’t have a say in it. The comfort is all the minutes you get to be with your child who can’t come home with you just yet.

A celebratory poster featuring two baby footprints inside a heart shape, with the text 'Giovanni is 2 months old!' and the date 'August 15, 2026'. It includes whimsical elements like trees and cartoon characters.

Nurses are the ones that carry you. Especially when you can’t physically be there around the clock. The number of times I’ve heard: “You just left your son in the hospital?!”, is bananas. Unless you know what MONTHS of this entails, don’t judge. We as mothers already struggle daily that we are separated from our kids and don’t think we don’t wear that every minute of every day. I happen to have ANOTHER medically complex child at home who depends on me to help keep her alive. These NURSES are the ones who are there for my son when I can’t be, and they are the ones trying to help comfort me when the guilt of choosing where to be, eats at me…because it does. They make little things like these for us that we will carry forever. These are our milestones. Nurses enjoy these milestones just as much as we do as parent! They are proud moments for everyone.

A close-up of a partially empty iced drink on a table, with yellow outdoor furniture and a blurred city backdrop, conveying a moment of reflection on gratitude and kindness.

This photo speaks volumes. The actual moment this was taken, was my first coffee and my first few minutes outside in the quiet after an extremely long and emotional night at the hospital. New floor, new team, new tests, new results, new everything. It can be really overwhelming! At this point in time, our finances were starting to flounder (still are but what can ya do right??), this was the time that I had to tuck my pride away and admit that we needed help. Our families have done so much for us, as much as they could really but the reality was, that we had to keep traveling to see our son and there is no end in sight. I had posted a GoFundMe Me to help us with gas and expenses to get back and forth. I am extremely grateful for everyone who donated as it kept us pushing for that much longer. We are 4 months into this journey and everyone who contributed got us here. No one will ever understand the amount of gratitude I have for anyone who has helped us along this exhausting and expensive journey…that isn’t over yet. The specific person who sent a donation that covered this coffee, is one I will never forget…because it’s someone who has been in our shoes. Someone who saw my story and was immediately put back into feelings they shouldn’t have had to relive. The solace and peace of mind that that person helped us achieve that week isn’t something I can put into words. This coffee tasted like something money couldn’t buy.

A collection of stuffed animals, children's books, and personal items arranged on a window sill, with a nighttime cityscape visible outside. The scene conveys a sentimental atmosphere related to decorating a child's room during a hospital stay.

There is one item specifically in this photo that meant absolutely everything to me. There is a little wooden thing up there with Winnie the Pooh & Piglet on it that says: “You’re The Best Part of My Tomorrow”… that was at my baby shower. It was one of my FAVORITE things in the world. I held onto it until he was born and then I decided to keep it next to him in every room he’s had along this journey. I couldn’t wait until the day he finally got to come home, and I could set it up next to him here, AT HOME. He was one week before discharge and the nurses in the unit he was in decided to move him over ONE ROOM and not tell me. I didn’t know he moved until I came in and realized his room wasn’t his room anymore and I had to scan other doors for his name. Almost every team has always let me know when they were moving him and I would be able to kindly remind them to make sure they take ALL of his belongings. I would mention that specifically. It always made it… not this time. I asked about that and the bear I bought his first week of life that’s wearing a shirt that says “Be Brave”. Every nurse had no answer. They didn’t know who moved him, they didn’t know who cleared the shelf those 2 items were on, they didn’t care in the slightest. I asked where his diaper bag was with all of his clothes in it was…they didn’t bother to check the closet in his previous room so thankfully I got that back. The kicker? The wooden Winnie the Pooh, had his name in Sharpie, big letters: GIOVANNI. It also had his birthday & time written on it. How could something that has his name on it, not make it into his room next door? That’s the hardest I’ve cried in a long time, after 3 months, he was finally coming home a week after this incident and I didn’t get to bring home the things that carried so much of my hope & emotions in it. They are just items to some, but to us parents who live this day in and day out, these things are priceless to us.

A young woman smiling while gently touching the head of a newborn baby in a medical setting, representing the emotional balance of caregiving.

This one is self-explanatory. How quickly a sibling who was an only child for 10 years goes from super excited that she is finally getting a sibling to feeling like all our attention is at the hospital. She isn’t completely wrong, half of our heart is stuck in Boston laying in a crib. What I try to remind her most of, is that she gets to be home with us. She has us whenever she needs us, but he looks around daily looking for mom & dad and doesn’t see us as often as he’s searching for. I explain to her that this wasn’t the plan and this wasn’t how this was supposed to go, it will be hard for a while but the one day we will all be under the same roof and they both will have what they need from us. Likewise, we will have what we need: being able to hug and laugh with both kids at the same time.

A baby in a car seat holding a blue blanket and wearing a nasal cannula, looking out the window.

This was his very first car ride home ever! I loved this day so much. It was hard having to learn traveling to Boston every day to see him was our normal for 3.5 months, but the emotions of it became easier to handle. The harder part was FINALLY getting to bring him home, having him home for just under 2 weeks and then having to be admitted again. Once again, we were in the throes of readjusting back to our “normal”-traveling to see him. To hold him. To kiss him. To see his smile. After that readmission, he was there for almost 3 weeks and got to come home again. For 2 days. He has been back in the hospital since then and is still not home with us.

Two men working on a car with the hood open at a gas station at night, with gas pumps visible in the background.

At this point, all of this was starting to feel like a curse. After managing to survive day to day with all of our finances in the gutter from traveling to Boston EVERY DAY for MONTHS ON END, this night we used what we had left in our pockets and put it in the tank. He pumped it, got back in the car, and it wouldn’t start. We spend 4+ hours here trying to figure it out and at least get it home, it cost us our visit that night. Of course we went through process of elimination, battery first. NOPE, couldn’t be the battery…that would be too easy. We are the parents of children with medical conditions…nothing is easy and that’s ok because we are built for “hard”. Turns out it was our starter, not cheap. But again, right now we are in “by any means necessary” to see our son. Into more debt we go, but we got it fixed a couple days later.

The Mediocre Medical Mom

The Mediocre Medical Mom

Leave a Reply Cancel reply

Hi! I’m Jen, a mediocre Mom in a ‘children with medical needs’ world.

Let’s connect

Join the fun!

Recent posts

REALITY: Feelings We as Medical Parents CAN’T Unfeel.

Trauma: Am I Coping or Disassociating?

Type 1 Diabetes in Children: