I wanted to write this for the parents who are currently in the NICU and desperately want to hear from someone who made it through. When we were in the middle of it, I remember looking for stories from parents whose babies had been through really long, complicated NICU stays. Sometimes you just need to see that there can be a life after all of this.
So here’s our story:
Pregnancy
My wife and I found out we were pregnant around the start of the new year, and originally my wife and I wanted to see the midwives at our local hospital. After our initial ultrasound there were some obvious issues, and we were referred to the MFMs. We found out early that our son had severe fetal growth restriction and that he was measuring below the 1st percentile on every measurement. We had several ultrasounds between weeks 10 and his birth. In addition to his small size, his Dopplers progressively got worse and by around week 15 he showed absent end diastolic flow. We were told that absent flow could progress to reversed flow within days. Somehow, he stayed in absent flow for around five weeks. My wife had started dramatically increasing her protein intake and drinking a lot of pomegranate juice during this time. We have no idea whether either of those things actually made a difference, but we were willing to try anything.
Eventually, one of the MFMs asked us to start thinking about what quality of life we wanted for our son and how that related to gestational age. We had to decide what week we would return to the hospital, knowing that once we went back, we would likely stay until delivery and be continuously monitored. This was an absolutely impossible question to answer. After talking to our doctors and family, we decided on 25 weeks. We went back to the hospital at 25 weeks with our bags packed, the Doppler showed a small amount of reversed flow, and we were admitted.
I've heard stories of hospitals and doctors going right into delivery after any sign of reversal, but we managed to extend her pregnancy an extra 10 days in antepartum. For those 10 days, my wife was essentially attached to an NST 24/7 watching our son's heart rate, waiting for signs of distress. Every little dip felt terrifying. When food would arrive at the room, we’d panic because we thought it meant the doctors were coming to deliver him. There were several moments when we thought, “This is it. He’s coming tonight.”
He was estimated to weigh only about 12 ounces. One doctor warned us that he might be too small to intubate and that there was a possibility they wouldn’t be able to do anything for him. I'm glad they said something because up until this point no one had mentioned anything like that and the reality set in that we could go through this whole journey and he could die the second he was born.
He ended up being born at 26+5. He weighed 1 pound 1 ounce. He was the smallest baby in the NICU when he was born. My wife had received 2 rounds of steroids and several rounds of magnesium before delivery.
Birth
The night of his birth he had a very good day. He had almost no decels in his heart rate and we went into the night thinking we could make it another day. Then at close to midnight his heart rate dropped, and it took a very long time to recover. We were constantly riding the edge of waiting as long as possible but not waiting too long where we would need a stat C section and my wife to be put under. It was decided that this was the best time to deliver. I was able to be in the OR with my wife and thankfully he came out bigger than expected and they were able to intubate him. I even got to cut the umbilical cord. Our son had a great Apgar score and initially did surprisingly well. He was put on a traditional ventilator and was on 21% oxygen during his first day. Then his first night happened.
Respiratory
Respiratory support was probably the biggest part of our son's NICU journey. He started on a traditional ventilator but after a few hours he deteriorated, and on his first night he was moved to a jet ventilator. After about a week he was starting to max out the jet and he was moved to the oscillator. He spent roughly eight weeks intubated before finally making his way off the ventilator. Looking back and now knowing what I know it's clear how very very sick he was.
From there it was a long progression through CPAP, high-flow oxygen, and eventually low-flow oxygen. We spent months celebrating tiny respiratory victories. A lower PEEP, a lower oxygen requirement, etc.
There were setbacks along the way, including pulmonary hypertension and several significant respiratory crises. Over the course of his stay, he had to be bagged probably 10 to 20 times. One of the worst crises happened after he was moved back to the traditional ventilator around 30 weeks. His oxygen needs had been creeping up and he wasn’t tolerating things he had previously handled well. One afternoon, his oxygen saturation suddenly crashed while the nurses were repositioning him. It went from the 90s down to the teens, with the lowest reading around 16. The room immediately filled with doctors and nurses. They had to bag him while we stood back and watched. At one point, the staff asked the other family in the room to leave. I truly believe they thought he might die.
The whole event lasted probably no longer than 15 min but to me and my wife it felt like we were standing there, crying and shaking, for hours. He eventually stabilized by going back on the oscillator, and we went home that night thinking things had settled down. Around 3 a.m., we got another call. He had crashed again and needed to be bagged. They told us he was not stable and that we should be ready to come if things didn't improve. On the advice of our primary nurse that night, the team tried nitric oxide, and thankfully he responded. They determined pulmonary hypertension was playing a major role.
The following day, he had another staff assist. He was bearing down and wasn’t breathing, and once again the team had to rush in to stabilize him.
It was one of several times during those 179 days when we genuinely didn’t know if we were going to get to take him home. He had a very long battle while we waited for his lungs to develop, and the idea of a trach was bought up several times. But after his crisis we intentionally took things very slowly and never weaned him unless we were sure he could handle it. And by the end, he had made it all the way down to low flow oxygen. And now, at home, he’s on an 8th of a liter and breathing pretty damn well.
PDA and heart surgery
Our son had a PDA that was wide open and very symptomatic. He would constantly decel during his shunting spells. We tried several unsuccessful rounds of Tylenol. After it was made clear he would need surgery, we attempted to schedule his PDA closure four different times, but each time something came up. an infection, illness, or another reason that made surgery unsafe. One thing we learned during all of this is that there are genuinely different opinions about when and whether a PDA should be closed. When we finally met with the surgeon, we were told that closing it probably wouldn’t be a complete game changer. But ultimately, it made a huge difference. After the surgery, we saw meaningful improvement, and it became another major step forward in his respiratory journey.
Feeding
We started thinking about feeding very early. As soon as we were able, we started doing milk drops to give him positive experiences with milk and hopefully help set him up for feeding later. He had a really strong suck and loved his pacifier from early on. Because of his high respiratory needs we couldn't start feeding until around 48 weeks. There were periods where he was taking 60–70% of his feeds by mouth, but it was getting clearer that the experience was stressful for everyone involved. Some days were great, followed by days where he barely wanted to eat. Eventually, a swallow study showed aspiration on thin liquids. A lot of his feeding difficulty also seemed to be tied to reflux. He would get uncomfortable, squirm, gag, or pull away from the bottle. We tried thickened feeds, different nipples, different approaches, and a lot of patience.
Eventually, we decided on a G-tube. That decision was hard emotionally, but it also changed the way we thought about feeding. The G-tube meant he could get the nutrition he needed without every bottle becoming a battle. Instead of making eating something he had to perform, we could let eating become something he could eventually enjoy. So instead of spending another month or two in the hospital working on bottles, we got the G-tube so we could take him home. Any surgery is scary, and in a way it felt like we were giving up on him. But I realized that he already had done 1000 impossible tasks, the least we could do is give him a break, he deserved it.
The last stretch
After months and months of respiratory setbacks, we finally started seeing the finish line. His respiratory support kept coming down, he was growing, his feeding was manageable with the G-tube, and eventually there wasn’t really a medical reason left for him to stay in the NICU.
After 179 days, we finally got to take him home.
Home. He is home.
He’s around 10 pounds now. He has his G-tube, and we’re still working on oral feeding. He likes breastfeeding! He’s smiling! He’s playing! He’s getting stronger! And after everything we’ve watched him go through, seeing him just be a baby at home is still pretty surreal. He’s not the 1 pound baby we were warned might be too small to help.
He’s not defined by his PDA, pulmonary hypertension, ROP, lung disease, reflux, aspiration, G-tube, or the NICU. He’s just our boy.
I don’t know what the next few months or years will look like. We’re still going to have appointments, specialists, feeding therapy, and plenty of things we’re watching closely. But he’s home! And when we were sitting in that NICU wondering if we’d ever get here, that was all we wanted.
If you’re in the NICU right now, I don’t know what your baby’s story will look like. I can’t promise you it will be easy, I can’t promise you there won’t be setbacks, but I can tell you that our story had a hell of a lot of them. And somehow, 179 days later, we’re sitting at home with our son.
So if you’re in the middle of it right now: Keep going, one day at a time.
