My pandemic post-pregnancy: ‘People don’t realize how lonely the NICU experience can be’

Baby James (Photo provided by Valerie Collignon)

Author’s note: This is not MY personal story, per se, (despite the “my pandemic pregnancy” headline), but a story told by our readers, month by month. Today’s is shared by Valerie.

You might have heard that being pregnant, trying to get pregnant, or delivering over the past year or so has been strange, in this age of COVID-19. But how? In what ways? We’re going to tell you. To contribute your own experience, scroll all the way down to the bottom of this article and tap the link.

In 2016, Valerie Collignon gave birth at 35 weeks, which resulted in a week-long NICU stay for her son that she described as “traumatizing.”

So when she and her husband got pregnant with their second baby in 2019, Collignon did everything she could, including administering weekly hormone injections, in an attempt to go full-term.

She went to many doctors appointments, underwent regular fetal monitoring and twice-weekly ultrasounds, and made it to the 37-week mark.

Collignon ended up delivering her second son around that time, due to gestational hypertension. For reference, 37 weeks might sound early (40 weeks is standard), but it is considered full-term.

Collignon and her husband welcomed their baby boy on Feb. 4, 2020. They named him James.

Valerie and James (Photo provided by Valerie Collignon)

But after Collignon delivered James, the infant needed to be intubated, and then spent the first 10 days of his life on a ventilator.

“I never expected my ‘full-term’ baby to be in the NICU and sicker than my late-term preemie,” Collignon said. “We stayed in the NICU for nearly three weeks. By the time we got out of the hospital, COVID-19 was starting to make its way to the States, and we were locked down a few weeks later. We had months of follow-up appointments that I wondered whether or not I should take him out of the house for.”

When Collignon filled out our form asking about her experience with a pandemic pregnancy or childbirth, she said, “(James is) about to turn 1, and he’s never known a life outside quarantine and virtual visits with family and friends.”

Of course, a lot has changed since she submitted that response, which was months and months ago.

And a silver lining has come from everything Collignon had to endure, as well.

This is how her story unfolded.

‘I didn’t want to be in the NICU again’

As mentioned, Collignon’s first son, Tommy, who was 5 years old when we chatted on the phone for this article in late April, was born at 35 weeks. Collignon’s water broke early, and Tommy made his debut sooner than expected, resulting in that seven-day NICU stay.

As for James, who is now about 18 months, Collignon said she was about 32 weeks along with his pregnancy when her blood pressure went up, which felt stressful.

Doctors decided it’d be best if he came at around 37 weeks.

Collignon said she was never officially diagnosed with preeclampsia, but her numbers were borderline throughout the pregnancy.

She had been given a blood pressure monitor, and was doing her readings about four times a day. Doctors told her a threshold in which to go into the ER, and she felt prepared. Her numbers looked high about three or four days before her scheduled C-section, but they lowered when she went into the hospital. Overall, it was just a nerve-wracking time, Collignon said.

“I didn’t want to be in the NICU again (with this new baby), because Tommy came early, and everything (with him) was so unexpected,” she said. “But Tommy was my first baby, so I didn’t know what to expect anyway. Even 35 weeks didn’t seem so early, then it ended up being a super traumatic birth experience. I remember crashing a few days after having him. I remember watching an infant CPR video and I started crying and couldn’t stop. I got diagnosed with postpartum disorder, but that wasn’t until Tommy was a little older.”

So, the idea of living through that experience all over again? Collignon was hoping the second time would be different.

She had a challenging entry into motherhood. So when she surpassed the 35-week mark with baby James, she was happy to keep him on the inside a little bit longer.

‘It was taking a long time for them to bring him to me’

A scheduled C-section at about 37 weeks sounded like a relief, in some ways.

Again, 37 weeks is full-term, so Collignon took some solace in the idea that Baby No. 2 might not need a NICU stay. She hoped to keep him in-room, as is standard protocol at most hospitals, which would make things like establishing breastfeeding and hosting family visits even easier.

“I was hoping and praying for that the second time around,” Collignon said.

On the big day, she was wheeled into the operating room, the procedure started, and she had a feeling the C-section was going well -- but then she started to suspect something was “off.”

“It was taking a long time for them to bring him to me,” she recalled.

Collignon was given the option to use clear drapes, which are relatively new in the birth world, and she could see some of what was happening.

This was February 2020, so at first, she suspected things were just slowed down due to COVID-19 precautions. Perhaps that’s why she couldn’t hold her baby right away, she thought.

Collignon felt grateful to have a kind anesthesiologist in the room, who took some photos for her, since she was unable to, of the birth itself.

But when she looked at the timestamps on the pictures later, she noticed her hunch was accurate: It was about 40 minutes from the time James was born until she finally got to hold him.

“And then it ended up being traumatic in another way, which was totally unexpected,” Collignon said.

As it turned out, James was dealing with some breathing issues, and struggling to transfer oxygen. It’s a fairly common issue, and it sometimes resolves itself in a day or so.

But that wasn’t the case for James.

Collignon ended up having to go back to the recovery area alone, again, although her husband Jeff was able to stay by baby James’ side.

At first, doctors said they’d just need to take the newborn to the nursery, and that a NICU visit might not be necessary. But the next thing the couple knew, James had been transferred to the NICU officially.

Once she heard the news, Collignon experienced that same familiar sinking feeling.

Not again.

The NICU stay

Within a few hours, James was on the ventilator and nitrous oxide.

Doctors put him in a special room in the NICU that would have turned into an operating room, if needed. (Luckily, that was never necessary).

Doctors told Collignon that he was a bigger baby by NICU standards, and sometimes, babies like James will have trouble breathing. All in all, he spent 16 days in the NICU. He learned how to eat, and some jaundice issues were resolved, as well.

If you recall, as of late February 2020, COVID-19 hadn’t started sweeping the United States just yet. It was in the country, but Florida didn’t see its first confirmed case until March.

“So, that was the silver lining,” Collignon said. “We were some of the last people to have that experience -- to have visitors in there.”

However, it was still considered flu season, so Tommy wasn’t able to visit and meet his new brother right away. Even Collignon couldn’t stay the night with James at first, because of the type of room he required. She had 24 hour access to her younger son, but she was not permitted to sleep there.

“Once he was moved to Level 2 NICU, I was given a private room to stay with him,” Collignon said.

When that happened, it felt a little better.

These were all baby steps toward coming home and starting life as a family of four.

The Collignon family at Disney (Photo provided by Valerie Collignon)

‘It seemed like a new situation every week’

The pandemic came into play more so at James’ follow-up appointments, once he was allowed home.

They had to do physical therapy and occupational therapy with him, and Collignon found herself questioning internally, “Do I risk my baby’s health for these appointments?”

Remember, it was still early on in the pandemic. Information was changing constantly, and we didn’t know much.

“Yeah, we didn’t know if it was safe to bring him places,” Collignon said. “But early intervention was so important. I was happy with the medical teams, but they didn’t know, either. It seemed like a new situation every week.”

James’ physical and occupational therapy were done at the same outpatient facility.

So, Collignon started taking him there once or twice a week, and at first, things felt fairly normal, she said.

Then, employees suddenly started handing out masks at the entrance.

“And you couldn’t wear your own,” Collignon said. “It had to be theirs.”

The next thing she knew, chairs were pulled from the waiting room, temperature checks were put in place, staffers wore face shields and set up hand sanitizer all over the building.

“It was hard,” Collignon said. “It was like, should I be out here with a medically fragile child in a pandemic? All the doctors said it was important for early intervention (but there were so many unknowns).”

It felt unsettling at times, but they kept attending.

Collignon said she was a part of some virtual support groups at the time, with parents participating from all over the country, and some were only given the option to do virtual PT and OT.

“We were happy to do it in-person, but it was a little unnerving,” she said.

Next, Collignon and her husband had to decide if they’d revise a tongue tie and lip tie.

It’s a fairly common thing babies often deal with. Some parents choose to get an infant’s lip tie, tongue tie, or both, fixed, to help with issues like breastfeeding. [Read more about it by clicking or tapping here.]

“It was like decision fatigue, all the time,” Collignon said. “And some women in my support groups are still going through it.”

It was an exhausting time for the family.

Luckily, most of that chapter is now in the past.

When we spoke in April, Collignon said they’re just now returning to some degree of normalcy. They’re vaccinated, as are many of their family members and friends.

“Just now, within the last month or so, it has felt a little more normal -- but the thing we’re laughing about is how well-prepared we are as a NICU family for a pandemic,” Collignon said. “We were already stocked up on hand sanitizer, Clorox wipes, and we didn’t let people touch (James). When we visited him in the hospital, we were scrubbed in, up to our elbows. We were prepared. (And then when you couldn’t get things like toilet paper), which happened about two weeks after we brought him home, we were happy we’d stocked up.”

They also felt fortunate to live in Florida, where things opened up a lot sooner than they did in other states. Plus, the weather was largely nice, and they were able to spend time outdoors.

“Not everyone had that luxury,” Collignon said.

Tommy, Valerie and James (Photo provided by Valerie Collignon)

As for James, “He’s definitely a pandemic baby. There’s some sensory-overload these days. He can read people’s faces even with masks on, and he goes to a day care where the teachers wear masks. He loves FaceTime, and knows how to put his finger on the screen -- probably because of how much time we spent on the laptop or phone, talking to family or grandparents (this past year).”

He didn’t even meet some family until April of this year, which felt surreal, Collignon said.

Reflecting on the NICU experience

As for what’s next for this family of four, Collignon realized she could channel her two kids’ NICU stays into something deeper.

“When you’re a parent in the NICU, the days are long,” she said. “You’re often alone. You’re looking for ways to connect with other people. People don’t realize how lonely the NICU experience can be.”

She’d chat with nurses, which she said was incredibly helpful, but yearned for more engagement.

Plus, when Tommy was born, both parents were able to visit. With James, remember, Tommy wasn’t allowed in, so one parent often had to stay with him.

Collignon’s husband would hang out with Tommy when the boy wasn’t in school. And when her husband went back to work, sometimes he was able to visit for lunch, but Collignon said 99% of the time, she was there alone.

“I’d sit there on my phone,” she said. “Your baby’s asleep and you’re breastfeeding or pumping, exhausting and lonely. You’d look up ‘hashtag NICU’ on Instagram -- and I don’t remember how I found Project NICU, but it was through social media. I followed them, and then COVID started, and they started offering support groups online, and it exploded.”

Project NICU is a Cleveland, Ohio-based group, but when the world turned virtual, they garnered all sorts of interest from all over, Collignon said.

“Everyone was looking for support, and with some local hospital resources shut down or on hold, (it made sense),” she explained.

And in terms of NICU support groups, generally speaking, Collignon knew they were a life-saver. She leaned on those resources after Tommy’s birth.

“It’s super healing and awesome to talk to people who get it,” she said. “They know what to say. And then you feel less alone with a fragile baby in a weird pandemic world.”

As Collignon became more connected with the group, she started working in the ambassador program, which assembles care packages for hospitals.

Then in November or December 2020, Project NICU finally said they needed help. COVID had made this support network explode, and they could use more resources.

Collignon knew just the person: Herself.

Having weathered two NICU stays and raising an infant during a pandemic, she felt more than qualified.

She’s now working as a partnership development specialist. It’s an unpaid position, but incredibly fulfilling.

“It’s been a way to heal myself, but also help other families,” Collignon said.

She was even able to do a care package drop-off at the hospital where she delivered: Orlando Health Winnie Palmer Hospital for Women & Babies. It was about 140 packages, and it felt cool to come full circle.

James - then and now (Photo provided by Valerie Collignon)

“I feel extremely lucky to have my two boys who are both extremely healthy and happy, but nothing about my pregnancy or the year that followed my son’s birth was what I expected,” Collignon said. “The silver lining is that I’ve channeled the trauma of both of my sons’ births and NICU stays into advocacy for NICU parents who are going through their NICU journey and (then afterward). Working to support families throughout their NICU journeys (has helped me) give back.”

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