When we began thinking about how to support women after childbirth, it didn’t take long for the Neonatal Intensive Care Unit (NICU) to come to mind. Some babies – whether born prematurely or with health issues – are placed in the NICU after they’re born until they’re ready to live life at home with their family. This can be incredibly challenging for parents. They have to see their new baby struggle and say goodbye after visiting hours are over. On top of that, they have to juggle other facets of their lives – housework, marriage, their older children, career, and their own emotions!
The NICU situation was on our hearts, but we’ve never actually experienced it firsthand. So, we needed help gaining insight on what it’s like. We called a friend of ours, Katie, and asked if we could interview her about her time in the NICU with her daughter, Brynn. We wanted an interview to help us perfect our service for NICU families. But, we also wanted to share with you, for the sake of awareness and understanding of what NICU experiences can be like.
Here’s the story of Katie and Brynn:
Ok, let’s start with some background; you said she was born at twenty-five weeks?
And you went into labor?
I went into labor.
You weren’t induced or anything?
Nope, I stayed home from work that day. I wasn’t feeling well.
You were having contractions and everything?
No contractions at the time. My mom came over to check on me because she’s my mom (laughs). And she said “I don’t know – the cramping makes me worried. I think you should go [to the hospital].” So, I went in and they had me on the monitor. When they looked on the ultrasound, my bag of waters was seeping into the cervix and we couldn’t figure out why. It had been maybe two hours. By then, I was having really strong contractions.
Were you terrified?
Yeah, it was insane. I called [my husband] Matt at work. I was like, “Well, they’re saying I’ll probably have to be on bed rest for a couple of weeks in the hospital.” Then, I called him back an hour later to tell him “Well, I’m in labor. So, you need to come!”
It was really fast. My water then broke. They took me back into the delivery room because they thought she was coming, right then and there. Luckily, the anesthesiologist came in and gave me an epidural, which slowed the contractions way down. Then, they gave me steroid injections and she stayed in overnight. The next morning around 6:30, they came in and said, “You’re dilated to ten – she’s coming.”
So, we had her early that morning. She was two pounds. The NICU Team was waiting there on the other side of the glass. [The Neonatologist] Dr. Farrera was like “Oh, she’s two pounds, that’s a good size for a twenty-five weeker!” So, it was a very fast vaginal delivery.
What were her first couple of hours like?
She was rushed to the Children’s Hospital and they intubated her right away. Matt went with her.
Was she crying?
She wasn’t. She couldn’t cry, but she sputtered, which they said was a good sign.
In my mind, not knowing micro-preemies from the past, I thought, “She’s not going to make it.” She was so tiny. I’d never seen a baby so tiny. And then, three hours after I had her, they let me go and see her. The nurses were like, “She’s doing really well; she’s actually breathing on her own.” She was breathing over the vent! Her Apgar Score was 8, which was amazing. She was a champion from the start.
The social worker was there. Doctors came in to see us right away. They told us what our days were going to look like from then on: “Every three hours, you’re going to come in and give her a little breastmilk, change her diaper, help us flip her to keep her head round.”
Did she have any other medical concerns? Was it just that she was premature?
Mostly that she was premature. And then, five days after she was born she had a spontaneous perforation in her small intestine. Her PDA was still open in her heart, which for a typical full-term child, closes up after they’re born. Hers didn’t, so they gave her some Ibuprofen. That can actually cause it to close sometimes. But, it also puts her intestines at risk. So, she started needing more oxygen that day. It was also the first day I got to hold her, so it was really emotional! I was holding her and her oxygen needs kept going up and up and up and we thought, “What’s going on?” Dr. Farrera came in and said, “We’re going to do an x-ray and make sure everything is ok.” Sure enough, there was a leak in her intestine. She had to have surgery – an ileostomy – to fix it. She was less than two pounds at that point because she’d lost weight, like every baby does.
Then, she had the PDA surgery a few weeks later.
Two surgeries! She is a fighter!
I know! Now, whenever she says, “Mom, I don’t think I can do it.” I’ll tell her, “You’ve done way worse than this! Young lady, you’ll be fine.”
So how long did she have to be in the NICU?
She was in the NICU, originally, for three months. Then, we went home for a couple of months, and then came back for her take-down surgery to fix the ileostomy [hole in her abdominal wall for an ostomy bag that collects stool]. From there, she was in for another month because she had an infection that was really serious.
When did you feel like you started to feel normal and were able to start the normal infancy?
Well, she also had some cysts develop from being intubated. Too much rubbing on the throat can cause them. So, she had bronchoscopies, which is a minor surgery; they just go down and remove the cysts. But they kept coming back. We were doing that until March 2013 – just a couple of months before her first birthday.
After that, I felt like we were more in the normal, other than that she was in early childhood special education to make sure she was meeting milestones and catching up to other kiddos.
How do they measure that, when they’re that premature?
They usually adjust [milestones] to their due date for the first two years. And then they expect them to be closer to their peers, which she was at around one-and-a-half.
Were you able to breastfeed her?
I pumped for her for four months. Then, right at the end of her hospital stay, we tried breastfeeding. But she kept aspirating, which is where breastmilk goes down in her lungs. It’s very dangerous. It can cause pneumonia.
So, we found out her left vocal cord was paralyzed from her heart surgery. The nerve runs past your rib cage, and there’s a fifty-fifty chance it could end with a paralyzed cord. Sometimes it recovers, sometimes it doesn’t – depends on the kid. So, that’s why she was aspirating: those chords weren’t closing off the airways properly.
How much were you at the hospital?
12 hours to 15 hours a day. Matt would go to work and come afterwards or he would come before work.
Did you have any pets at the time?
Yes, a dog and a bird. And our dog – thankfully, my parents are here – so they just took her into their home. We were taxed.
How did the hospital support you?
The Ronald McDonald House was a big one. They provide housing, and even if you’re not staying overnight, you can use a room to go take a nap during the day or shower.
They also have a fully stocked kitchen and pantry. So, if you want to go in and make yourself lunch, you can. Anybody can use that. Even friends and family, which is wonderful. And most nights of the week they had a group serving a full dinner.
Did they provide anything else for you? Toiletries? Snacks?
Yes, they had a limited number of toiletries. And that’s something my mom’s friend thought of, she gave us a huge basket full of toiletries. I was like, “This is brilliant!” I never would have thought of it at the time.
Did the hospital have any emotional support groups?
No, that was one I thought they were lacking in. I had counselors; I had one periodically come in and check on me. At the time, the house manager at the Ronald McDonald House was a social worker as well. He was a real confidant; he was who I would talk to if I needed someone when Matt wasn’t around. The NICU is really isolated. You have your private room, which is nice – it protects the baby from germs and infection. But, we also weren’t really supposed to socialize outside our room with other families because you never know what the situation was. Eventually, one of our rooms was across the hall from another little fellow that was about the same gestational age as Brynn. We just happened to be out in the hallway – both of us moms were napping on the benches that they have there. We just started talking and that ended up being a huge friendship. It was, basically, on the luck.
If there had been a support group, I feel like I probably would have met more people.
Could anybody be in her room with you?
No, not all the time. Sometimes, it was ok. In the beginning, it wasn’t because it was still flu season. So, it could only be us and maybe my mom or dad occasionally. [It was] very restricted. But people would come to the hospital and meet up with us in the cafeteria or the lobby or the Ronald McDonald House. That’s another thing that made it nice. My friends were like, “I don’t need to see the baby; I just want to make sure you’re ok.”
Was hygiene difficult?
Yeah, sometimes it went by the wayside. The [Children’s Hospital] does have a couple of showers you could use, which was nice. That’s when those toiletries really came in handy. And then the Ronald McDonald House, we had that option. I rarely showered at home. I just didn’t want to be home, I wanted to be with her.
You were recovering, too. What was that like? Was it the full-on postpartum experience?
Yeah, I definitely suffered from Postpartum Depression. At one point when I went in for my six-week check-up, and they told me I had postpartum psychosis, but they didn’t really give me an outlet as to how to take care of it.
They didn’t refer you to anybody?
No, which was kind of upsetting at the time. But I think as time went on even after Brynn was home, I was still struggling pretty badly and it got to the point where I finally went and saw a psychologist. I just needed something. I didn’t know how to help myself and she was like, “Yeah, you’re at the point where your stress level has been at such a high.” And I was fixating on everything. “At this point,” she said, “You’re at the PTSD level, because you can’t bring yourself down at all at any point in the day.” And I was having nightmares and panic attacks.
So, that was something I really wish they had done a better job at.
You had sessions with your psychologist regularly? All you really needed to do was talk to somebody?
She gave me some exercises and techniques. And I started to work on meditation, and that has helped me tremendously. I still have moments, but Matt’s really good at bringing me back down.
You said your family was very supportive – like taking care of your dog. Were there any other things that they were able to do for you?
My mom would come down and sit with me whenever she could. She would do our laundry – that was a big one. Otherwise, it just never got done. We were sitting [at the hospital] all the time. So, that was a big help. And my dad was still working two jobs. But if he had the time, he would come over to mow the lawn.
They would bring us dinner. Take us out to a dinner near the hospital.
Was there anything you wished you had had more help with?
The biggest thing was just our mental health. It’s something that I think is hard to avoid, but I wish there had been more support from the hospital. Or just anybody to talk to, in general. Friends aren’t always available after work.
Do you feel you needed someone who is more of a specialist in that area?
Not necessarily, just somebody! Just a mom in general, through the whole postpartum situation, even if it’s not a NICU situation. The emotions of pregnancy and delivery are the same no matter what. Certain things are heightened in the NICU, of course. There’s a lot of emotions to not being able to breastfeed and just having to pump. And then finding out she had a paralyzed vocal cord and can’t breastfeed. I didn’t really have anyone to talk to about that, either.
It didn’t seem like it was hard for people to know how to support you. It just seemed like they knew you well enough?
Occasionally, you would have people be like, “How can I help?” And I’d always be like, “I don’t really know! Thank you for the offer!” But, I was at a loss. Help my baby grow fifty pounds! And help her breathe, so she’s off oxygen!
Coming home from the NICU was another part of it. You’re usually coming home with an oxygen tank and apnea monitor. And in Brynn’s case we had an ileostomy bag.
Coming home was tough because everyone thought we were fine then. But I was managing oxygen flow, making sure she was at proper saturation levels. I was watching the apnea monitor, and if that had gone off, I would call the doctor. And if I had trouble with the ileostomy bag, I would take her to the ER to see the Stoma nurse.
It would have been nice to just have people come by, just so it didn’t feel like I was running a hospital.
What would you say was the most challenging part of it all?
Having to get through my times to do things at the house. I mean, we still had a house to take care of!
The other thing that I would say was difficult was the isolation. I was lucky enough and very thankful that my job let me be done for the [school] year. They got me a sub teacher, and I was able to stay at the hospital. That was wonderful, but it was also isolating to be there by myself all the time.
Occasionally, friends would be like, “I’m just going to come down and have coffee with you this morning,” or “I’m going to bring you lunch,” which was really nice.
Was there anything else that you wish people would have known about the NICU experience?
There were two things that I thought of after the whole thing, as far as communication. We did Caring Bridge and that was helpful in giving people information. Sometimes we had people, though, who were like, “You haven’t updated in four days!” People didn’t always understand how busy we were. They were very strict about what we brought into the room because they didn’t want anything that could carry germs. So, I never brought a laptop in or anything. I always updated late at night or when I got home. People just imagine you’re sitting around the whole time with your baby. I was actually pressing my face against that little box or sitting there with her little door open reading books to her.
The other thing that we struggled with was communicating that people didn’t need to come see her. There were big restrictions. It would have been nice if there was an easier way to give a blanket statement to everybody: we can’t have visitors at this time. We want you to meet her, it’s not that we don’t want you to be here; we just need to keep her safe.
It’s like you and the medical care team just need to be there for her, and everyone else just needs to be there for you, without her.
Which is hard to understand, and I get that. It’s not a normal birth.
Was there anything else people did that was helpful?
Sometimes, people gave us gas cards, which was really nice because we were already paying for parking and it got really expensive. So, that was one thing we could save money on.
Somebody gave us a basket with a big blanket and pillows. The benches pull out in the NICU room, so I would take naps there sometimes. It was a really simple thing, but so useful.
Preemie clothes, that was one thing! When preemies start wearing clothes, they have to be buttons, though, they can’t have zippers. So, people would give us preemie clothes, and it was just a normal part about having a baby.
How does Marabou support women?
We live in culture where “bouncing back” is more valued than proper rest. As admirable as it may be for a sports star to get back on the field, the same rules don’t apply to postpartum recovery. The traditional resting period has been stolen from women through pressure to get back to their job or simply through lack of presence.
Grandmas, sisters and best friends who otherwise would have been there to help a woman transition into motherhood often live too far away to be of any help. Household chores and caring for older children inevitably fall on the mom. But she just delivered a new life! She needs rest.
Marabou Services is a unique gift registry which provides services instead of stuff. Most mom’s get too many onesies, too many baby blankets and not enough helping hands. Break out of a destructive cultural norm and start a Marabou registry today.
With a Marabou registry you can sing up for any service which will benefit you or someone you know during the postpartum recovery period.
Postpartum doulas for a first time mom
House cleanings for moms of multiples
Childcare for moms with older children!
Once your registry is created, add it to any other registry or post it to your Facebook and ask friends and family contribute to your postpartum service, rather than buying you more stuff.