Words & Wisdom from NICU Mamas
Having a baby in the NICU can feel stressful and isolating. Especially during a global pandemic. To help give you hope and remind you that you are not alone, seven incredible mothers have shared their words & wisdom.
While some mothers have time to prepare for the idea of their baby having to be admitted to the Neonatal Intensive Care Unit (NICU), many mothers are blindsided after delivery.
Regardless of how the news is broken, the thought of your baby needing round the clock monitoring and medical attention can be anxiety-inducing to say the least.
Below, we spoke to seven incredible mothers about their NICU experiences and asked them for their advice. One thing they all agreed on: Ask lots of questions!!
Kylie + Ruby
As a Type 1 Diabetic, Kylie’s pregnancy with Ruby was high risk from Day 1. At 31 weeks, that risk became a reality when Kylie was told that she needed to deliver immediately because Ruby was in distress. Ruby stayed in the NICU for five weeks.
“My advice: Go easy on yourself. I tried to be the tough one for everyone because I didn’t want anyone to see me crying or worried. I think deep down, I didn’t want them to think I couldn’t handle it and that’s not what would of happened. It’s ok to have a big cry and to be angry that things didn’t go to plan. Just remember that you are strong, your baby is a miracle and by adapting to this new way of life for the moment, you’re getting one step closer to going home.
Also, take the help, ask all of your questions to the nurses/drs (so you’re not coming up with 1000 reasons why your baby happened to sneeze,) be hands-on changing diapers, hold cuddles as long as possible, decorate their space with a name sign or photos! As much as we all long for the day that they finally say you can go home, try not to let that control you. Believe me I know that’s easier said than done, but just be present in the moment and experience this albeit different but special time with your beautiful new baby.”
Julie + Charlie
Born via emergency c-section at 37 weeks, Julie’s son Charlie only weighed 3lbs 10 oz. Charlie spent twelve days in the NICU.
“After Charlie was born, they took him to the NICU immediately. They didn’t want us to do skin to skin because it’s so cold in the OR and since he was tiny, they weren’t sure he would be able to regulate his temperature. To be completely honest; I really struggled. It was a roller coaster. Some days I was more comfortable than others. Luckily, we were allowed to visit 24/7 as much as we wanted. Only catch – due to social distancing rules, my husband and I could not be there the same time so we alternated.
The unknown is really scary. We were lucky in that Charlie didn’t have any respiratory problems, he simply needed to gain weight. Every morning at 9am the doctors would do rounds and they allowed one parent to go. I highly recommend it, as we got to know his medical staff and stayed informed of what was going on on a daily basis.”
Paige + Edward
Born at 34 weeks, little Ed’s entrance to the world was fast and furious! Ed stayed in the NICU for three weeks.
“Honestly, I felt surprisingly at ease with the situation. I had complete faith that Ed was in the right place.
Having a baby with health issues would be terrifying. I feel so lucky that apart from being early, not being able to suck properly and needing caffeine to stimulate the part of his brain that signals the lungs to inflate, Ed was other wise well. I think having trust in your doctors and nurses is paramount. If you are concerned or anxious about any of their treatments or decisions always ask why and don’t be afraid to ask for a second opinion. Not knowing when you can come home can be daunting, but I was comfortable in the knowledge Ed was where he needed to be. Also, being my first born, it was a great time to absorb the midwives knowledge and learn the basics of how to care for a newborn. I literally didn’t know how to change a diaper, but a three-week crash course in special care will do that.
My experience honestly was almost pleasurable. I didn’t know any different at the time, and Ed was never critical (although the first few days I’m sure I was in total shock and would have no idea.) The support and love I felt from all the hospital staff was overwhelming. I would have stayed another three weeks if they told me to.”
Lykera + Kalarny
Even after a preeclampsia scare and emergency c-section, Lykera’s baby, Kalarny, was born happy and healthy. That all changed at his six-week check up.
“At our routine six-week check up, Kalarny presented quite floppy, had difficulty breathing and a heart murmur. We just thought we’d struck gold with a baby that was so chilled not knowing any different being first time parents. We were then sent for numerous tests and to meet with a pediatrician the following day. This is when things started to turn pear shaped. The day we met with the pediatrician, she examined him and told us he was in the early phase of heart failure and were admitted to the hospital. They discovered Kalarny had coarctation of the aorta and required major surgery to cut out the narrowing section of his aorta and rejoin it. The cardiac team explained everything so thoroughly and answered every question we had without any hesitation, they said we’d most likely be in hospital for four to six weeks depending on how Kalarny recovered.
Handing my tiny little baby over to the anaesthetic team broke me. I fell into a heap not knowing if I’d get my little boy back. Three and a half hours later (what felt like eternity,) we got the phone call he was out of surgery and in the NICU and we could see him. Walking into the NICU was a massive eye opener for us not knowing what to expect, but the doctors and nurses were honestly incredible. They walked us through the entire process, explained what they were doing and why they were doing it. We were appointed a social worker also to help us through the journey, she was incredible. She helped us out with accomodation, parking fees and more. You name it, she had the answer! All up we spent a total of 6 weeks in hospital.
The advice I would give to someone having to face a stay in the NICU is ask as many questions as you like. No question is ever deemed unreasonable, it’s your baby and you need to be aware of exactly what’s happening so you can be prepared for the journey you’re about to embark on. Asking for help if your not coping is perfectly ok too. For me, I think knowing a time frame of your stay is nice, but sometimes it’s worse knowing and getting your hopes up towards the end makes the stay harder if things don’t go to plan.”
Amy + Lola
Amy has an emergency c-section at 35 weeks. Doctors spent four minutes trying to get Lola to breathe. After also battling sepsis, she was sent home from the NICU after 11 days.
“Even though I knew Lola was safe, I would get anxious even leaving the hospital to go for lunch with my other children and husband. I would call to make sure she was ok. I was totally, ‘That Mom.’
As scary as it can be with your baby’s health, try to trust your instincts if you feel something isn’t right. Communication with the doctors is key. I asked a million and ten questions all the time to make sure I knew what was happening and where we were up to next with Lola’s meds etc.
As for knowing when they come home, that’s such a hard question for them to answer I found out. They don’t like to give you any false hope. As a result, they don’t mention too much about days they expect you to be gone so try not focus too much on that if you can or it will send you mad. Just know you are in the best possible place for your baby and they will send you home as soon as they see your baby is doing well enough to do so.”
Laura + Roy
Other than having gestational diabetes, Laura didn’t have any pregnancy complications, which is why she was surprised to go into labor five weeks early. Roy spent fifteen days in the NICU.
“I had total faith in the doctor that delivered Roy. From the moment I met her, she always seemed to keep it real and straight. Whatever she told me, I trusted her. After that, I remember talking to A LOT of nurses. The doctors who came to check on me were all lovely, but it was very impersonal. And I barely remember speaking to any of his doctors while we were in hospital. I’m not even sure I could remember any of their names. But I remember the nurses’ names. They were my saving grace and kept me lifted, comforted, informed, and educated.
The human body is an incredible thing. And as tiny as these little babies are, they are fighters. There’s no sugar coating that it’s unsettling and scary and I’m not going to pretend that you don’t wish you were home with them more than anything every single minute they are there… BUT, the NICU is a safe place. These people are dedicated to taking care of these little humans. They want them to succeed. Try to trust them. Unless you have a medical background, you’re not supposed to be an expert at what might be happening. It’s okay to ask a million questions. And, if you have a partner in all of this – be kind to each other, take care of one another, remind them that you love them and put one foot in front of the other together.”
Alanah + Myles
After being diagnosed with Type 1 diabetes at 26 weeks, Alanah knew there was a high chance of Myles needing to go to the NICU. Myles went home after eight days in special care.
“I honestly don’t know if anything anyone can say anything to prepare you for how you will feel, all I can say is that everyday is a rollercoaster. Some days are so amazing and some are so hard. Just know that you are doing the best job you can; you are strong mama!
Look after yourself and advocate for both you and your baby, push for help and ask a million questions. The NICU nurses are so so lovely and they will help, you just NEED to ask. Oh and request the comfy chair!”