2021: Diane's NICU Story
BECOMING PARENTS DURING THE PANDEMIC
Diane and her husband, Aaron,’s journey to pregnancy was full of heartbreaks and setbacks—from miscarriage, to fertility treatments, to a preterm birth during the COVID-19 pandemic.
“My husband and I tried for our first and only child in our forties. And statistics and science tell us you can't have a baby at that age, or you're in a very, very slim chance. So that pregnancy was devastating because I got pregnant naturally and I was surprised I did. I always assumed I'd have to do IVF or adopt.”
Once Diane was feeling strong enough after her miscarriage, they decided to do fertility treatments and try again. After six procedures total over two years, she finally she got pregnant. While at first she way overjoyed, she had a high-risk pregnancy, hemorrhaged, and was on bed rest. “It was awful, but I was happy,” she says. “But I was filled with—and crippled with—fear because of the first child I lost, and science says I can't really stay pregnant.” Then, to make matters worse, COVID-19 hit.
There were no high-risk pregnancy doctors or NICUs where they were staying in New York. A doctor told them, “Your baby's very small and you have to travel an hour and 20 minutes to go out to a high-risk pregnancy doctor, and you have to do it this afternoon or you do it tomorrow because this is important.’”
This new doctor told them that Diane needed to be monitored overnight. She ended up needing an emergency C-section, and her baby, Hunter was born preterm at 28 weeks and 5 days. “I almost had a stillborn because if that doctor’s instinct didn't say for me to be monitored, I would have gone home and my baby would have died inside me,” Diane says. “But because I was at the hospital, they were able to monitor it and get him out.”
Doctors told Diane her son Hunter would need to stay in the NICU until his due date—which would be in 11 weeks. “It was scary with COVID because they were only allowing one parent at a time,” Diane says. “And since I wanted to breastfeed, that meant it was going to be me. So, I had to take it all on by myself, and I was the only one visiting. And the first family photo that I had with my husband and my son, I had a mask on, I was holding my son, and my husband was on an iPad on Zoom in the background. That was my first family photo during COVID.”
“I had to wear a mask the whole time—we all did,” she says. “I was so afraid to take my mask off, my son did not see my face for probably two months because I was so afraid. And I never smelled him until about that day, which is two months. And eventually restrictions were lifted, so [my husband] was able to come in, and he was able to meet his son. But in total my son was in the NICU for 93 days. And he had three infections, and he also had medical neck, which is a gastrointestinal problem. And his discharge date moved at least five times because he suffered from serious reflux. And something important is, I was always told you have to breastfeed. That's the way your baby's going to survive. And I was looking forward to it, but his reflux was so bad they weren't sure if it was a protein/dairy allergy, or his reflux. So, I had to make the decision to either give up dairy, and I'm not exactly always the healthiest, so it wouldn't have been right for me to give up dairy. So I had to make the decision if I'm being selfish giving up something I always looked forward to if I had a child, or have my child be a formula-only baby.
“And I felt selfish because I did not give up dairy because I knew it would make me unhealthy. And I wouldn't be able to take care of him. So he was a formula-fed baby. And I was okay with that because he did have at least two months of breastmilk. So that was hard. And when I was able to breastfeed him before they said, you have to make the decision to give up dairy, there is nothing scarier than when you’re breastfeeding your child and he starts turning blue. And all you're trying to do is feed him.
“Because his reflux was so bad the air was getting trapped and the milk was coming up. So, it happened twice where he couldn't breathe and he was turning blue. So that's when they said it's reflux, it's the dairy. So I gave it up—gave up dairy. So he was in the NICU for that long. Eventually after many, many times of his discharge changing he was finally released. It was a joyous day, but my husband and I were very scared to leave the NICU. We probably stayed there longer. I think they pretty much were like, “Get out. You've been here for 93 days, how much longer do you want to be here?’ We were so afraid of taking care of him without the wires, and the monitoring, and the medical staff.
“I thought I had it—he was home for a week and then one day he couldn't breathe, and he was stiff like a log, I would describe it. And I remember poking him and he kind of rolled like a log. He was turning blue again. And thank God my sister-in-law, who is a critical care nurse, was at the house, and she had to give him a breath so he would breathe again. And we called the ambulance, 911. This is a week after we were discharged. And we went back to the hospital and even the staff said, didn't you just leave last week? And we were there again.
“But even though he had a BRUE—that’s a brief resolved unexplained event—It's actually quite common with children. So he had that. But he's healthy now. And we’re grateful. He has a gazillion doctors still, but he's healthy, and strong and progressing.
“The NICU nurses and the doctors, they were so wonderful. They were not just medical staff, they were therapists. They taught me how to take care of him, they taught me four signals—and I will say, if they didn't teach me that, when he came home and then we had to call the ambulance that day, if I wasn't trained from the NICU staff in Vermont I might not have known what to do.
“It's tucked in a place that I don't talk about a lot. And when I do it's hard for me to process it, but emotionally it's still there. And I am not afraid to say I got a therapist because you can't keep this in, because you have to be the best version of yourself for your child. And if you're struggling emotionally, eventually your child will feel it and you might not be the best version of yourself.
Diane wants other parents with babies in the NICU to know they’re not alone. “If you're in the NICU and you feel isolated, go online,” she says. “There are message boards, there are online Zooms. March Of Dimes actually has a really good program that I looked up myself because I was desperate to have any research and any contact even if it wasn't in person.”
“I was in a world of supportive people, but I felt alone and isolated emotionally because nobody could relate to what I was going through,” Diane says. “They could share their stories, but I never connected with them emotionally. I hope that in sharing my story that women and men who see and hear what happened to me, that they will feel inspiration to reach out and get support with other people. And even if they don't that even if they see my story, if it makes them feel a little better for one day, they can get out of bed and finish their day it'll all be worth it.”
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