I’m Ian, a co-founder of Snug — a new Colorado company aimed at helping parents and a proud partner of Love for Lily. I’m also a NICU dad, having spent 64 days in the NICU at Rose Medical with my son, Sam. He was born at 27 weeks and 2lbs 10oz. Sam just celebrated his second birthday and is a happy, thriving kid with happy, thriving parents. So, rest assured, this story has a happy ending — or at least a happy middle, with the ending yet to be written.
I’m an engineer, so my coping mechanism in the NICU was to learn as much as I could about the process, the machines, the prognoses, and this little boy who was fighting everyday in an environment he just wasn’t built for. My wife is a writer, so she found her peace in befriending the nurses, bringing personal objects and energy into the room, and doing double-shifts of skin-to-skin with Sam. I could tell our story from my perspective and bore you to death, or tell it from her’s and bring you to tears. I’ll aim for a happy medium. Part educational, part inspirational.
Lungs. Breathe in oxygen, clear carbon dioxide.
A baby in the womb “breathes” via the placenta, with oxygen and carbon dioxide flowing through the blood. With an early entry into the dry, airy, post-womb world of the NICU, Sam had a hard time. Thousands of small tears in his lungs caused his chest cavity to fill with air, polluting the rest of the body with carbon dioxide. His body mounted a defense that caused pneumonia and made things worse. After a 24-hour “honeymoon” period where the body’s systems are running on adrenaline, his lungs started failing and his vitals were upside down. Going to bed that second night, we were told the goal was to “get through the night”. It was our low point of a long journey.
The next morning, a combination of a chest tube to vent his chest cavity and an amazing new oscillating ventilator, Sam had cleared some of the immediate life-threatening hurdles. The oscillating ventilator helped him breath 60+ times per second, so his lungs were able to stay inflated and not stress and tear as much on each inhale and exhale. We talk a lot about the people involved in the NICU (and there are a lot of them!), but it’s also amazing to think of all the patents and innovation and stuff in the NICU. Portable sterile fields, PICC lines, all the different ventilators, EKGs, etc. Really amazing technology that saves lives — and 100% saved Sam’s.
Heart. Beat, pump blood, don’t stop.
Any NICU parent will know what a “brady” is (short for bradycardia), but I can still remember the first time it was explained to me. Early on, I asked a nurse what is required for discharge. She listed several things and then said “and 5 days without a brady”. What’s a brady? It’s when the heart stops. I’m sorry, what? Yeah, the baby will stop breathing — that’s apnea. And then the heart slows considerably — that’s a brady. Sometimes the baby will recover on their own and sometimes they’ll need a little rub. I was shocked at how tenuous this grip on life was, with cascading failures not just possible, but expected. But there is a plan and like so much in the NICU, it may not sound normal, but it is.
Sam also had a duct in his heart that wouldn’t close on its own (PDA). 5 years prior, that would have resulted in bedside, open-heart surgery, no question. We learned of some early research that showed a small dose of acetaminophen could actually trigger the PDA to close. After a few sleepless nights burrowing into the internet and worrying about heart surgery on a 3lb baby, sure enough, a touch of acetaminophen and it closed. Neonatology has made truly amazing strides recently — don’t go down internet rabbit holes, especially if they’re a few years old.
Brain, ears, and eyes. Relax and grow.
Parents in the NICU have a lot on their mind and it can be difficult to “get ahead” of the barrage of new symptoms and new vocabulary and new faces. I found it incredibly hard to understand the relative importance of various systems — should I worry at all about ROP in his eyes at this point or stay focused on his lungs and breathing?
I would tell all parents that the best you can do for the brain, ears, and eyes is kangaroo care (skin-to-skin), as much as you’re able. Your worry about some possibly-cloud thing in some early brain scan is not going to help anything.
Skin-to-skin was our favorite time of day and we were lucky enough to get 500+ hours of skin-to-skin with Sam. Finally being able to hold your kid, sync up with them, and feel like you’re doing something important for their development — something that the doctors and nurses can’t do, only you as the parents — that’s special. There’s so much that is out of your hands, but this is something you can do often and it’s proven to work wonders on brain and sensory development.
Home, but not and alone.
Even the very end of a NICU journey feels hectic. Say goodbye to everyone, learn how to use your car seat, talk to the oxygen distributor, sign all your paperwork, etc. All the while, the soothing beeps of the isolette continue in the background.
And then, all of sudden, you’re home, in silence, with a baby. No nurses. No beeping. No machines.
It took us a long time to adjust to life at home, away from the perceived security of the NICU. I think that most parents, even with an entirely normal birth, could use more community and support in their life. It is important to realize all of the resources available to you, depending on your situation, and take advantage of them. Because Sam was born under 1,200 grams, we’ve been fortunate to have PT and OT sessions for free via Early Intervention Colorado.
Talk to your hospital administrators during your stay to understand these programs. Reach out to Love for Lily and other resources in the community. Reach out to us at Snug and we’d be happy to connect you where we can. There is so much compassion and understanding in the NICU community — tap into it and then, one day when you’re able, give back.
It was with the desire to contribute to this community that we conceived of Snug. I don’t have any memory of buying Sam’s diapers those first few months when we moved home, though of course I did. We were so focused on keeping our baby safe and healthy in his new environment that everything else was a blur. It would have been nice to have a service like Snug to take care of all the stuff we needed to help Sam thrive. That is the core of why we started our company.
In partnership with Love for Lily, we will be providing a month of diapers to all families leaving the NICU. In addition, we have built a virtual NICU Corner Store that stocks all the items that parents need after the NICU, but are difficult to find and purchase — Tender Grip cannula stickers, Medline products, and more. Visit Snug to read more about our partnership.