An Interview With a NICU Mom: What She Wants You to Know

Having a baby in the Neonatal Intensive Care Unit is scary and stressful. Some women who have higher risk pregnancies are a little more prepared for their experience in the NICU, but it's a very unique postpartum experience for most.

This month, Mamasoup generously donated 200 bath bombs to some parents who are unable to go home as their children need to stay in the hospital. These parents are living at Ronald McDonald House in Toronto while their children lay in the hospitals close by during Christmas. A bath bomb isn't going to change their situation or ease their worries, but it may encourage some moms to take a little time out for some self-care.

As a nurse, I know how hard it is to have a baby who doesn't get to go home with you. But as a mama, I can't fathom the challenges these new moms are facing.

I interviewed a former NICU mama about her experience and insights, and here's what she had to say:

Tell me how you ended up staying at Ronald McDonald House in Toronto. What were the circumstances that led you there?

It was my first pregnancy and I had complications.  I went for a regular doctor’s appointment on a Wednesday and my family physician did not like the sound of the heartbeat.  He referred me to the Special Pregnancy Program at Mt. Sinai Hospital in Toronto.  We went for our appointment and from there we were sent to Sick Kids where they performed an ultrasound and testing of the heart.  They found that the Heart only had one vein and one artery where it should have been 1 vein and 2 arteries. The Baby wasn’t growing and after my next visit, the heart had stopped.  I attended Mt. Sinai again to learn that the baby did not make it and therefore had to perform a DNC.

I got pregnant again a few months later and the pregnancy seemed to be going fairly well.  Again, I visited my family physician on a Wednesday for a regular appointment.  The heart beat was good this time, however, there was a lot of potassium showing in my urine and my blood pressure was sky high! My doc told me to head straight to Mt. Sinai as I was already a previous patient of the program.

I did just that.  After ultrasound upon ultrasound upon ultrasound and blood work upon blood work upon blood work they finally got the meds right and got my blood pressure down.  Although I was on bed rest, everything was going and growing great.

I visited Mt. Sinai a couple weeks later for a check-up and ultrasound.

All looked well, my BP was down and I just had to visit with my OB.

We waited for my OB to show and when she did….she told us that the BP is down everything was good that way, however, the baby stopped growing since the last visit.  Once the meds kicked in, it slowed the blood flow and therefore slowed the baby’s growth.  She explained that we weren’t gaining anything from keeping the baby inside and that we would have to deliver.

So we delivered; I was 29wk 6days pregnant.  We had a baby girl.  Weighing 2lbs 1 oz (dropping to 1lb 8oz) 21 inches long at 10:17am.

How long did you stay there?

We were immediately interviewed to get a spot at Ronald Mcdonald House.  We stayed there for 6 weeks and then had our daughter transferred to Southlake Hospital in Newmarket to be a bit closer to home.

 Having a baby in the NICU is very, very stressful. What would you say to other moms going through it right now?

One day I was sitting in the waiting room of the level 2 NICU.  We were only allowed 2 visitors in there and my husband was in visiting with his parents. There was another couple that had visitors there that day as well- their visitors happened to be previous NICU parents too.  I sat in the waiting room and one visitor was waiting his turn to go in.  He looked at me and said “you ok?” I said yes!  He (being a preemie parent) said to me “You do go home! I know it doesn’t feel like it right now, but you do go home”

That resonated with me so much.  It felt like I was 2 steps forward and 10 steps back.  I felt like we were never getting out of there and I was so frustrated.  Until that day! Everything started to come together after that and within weeks, we were home.

So that’s what I would say to other moms…..YOU WILL eventually be at home, with your baby, doing your thing….and this will feel like a lifetime ago!

List 3-5 things you learned by being a NICU mom:

Have patience….you need patience as every day is something new.  New hurdles to jump through.

Your baby will grow.  It just takes time.  They will do it in their own time as they get stronger

Skin to skin IS necessary.  Your baby will grow so much stronger and your bond will grow that much more from doing this.

You DO NOT need to be there 24/7.  It will be hard.  It will be hard to leave and take a breather, go home, visit friends, gain some normalcy….you have to do this. You have to take time for you and release some control.  The nurses there know what they are doing and they know that you need time for you.  Let go a little because when you do get to go home…it will all change.  You will no longer get that time alone to work through the stress and anxiety. Take time for YOU!

I don’t know if it happens at every hospital but at ours they had “special parents” these were the parents that basically never left.  They thought they knew more and they were better.  They were even given free parking and a special chair for feeding and skin to skin to be complete hands on parents.  THIS IS NOT NECESSARY!!!!!  I did not participate in this program.  I did what I needed to on my own terms and own time! I didn’t need the free parking….and at the end of the day, when it was time to do things like bath our babies….I knew how to better than those parents, I was more comfortable and less stressed and could handle myself and my child quite well!

 Any tips or tricks to share with other higher-risk, pregnant moms who know their baby has a chance of ending up there?

Im not sure there is any tips or tricks really.  Listen to your physician and nursing team.  They know what they are doing.  Have patience and if you don’t already, you are going to learn it quick! Have someone to depend on….your spouse, best friend, family…anyone…you will need them.  It truly does take a village and you will need help, ask for it, this is not the time to be proud!

The biggest thing, listen to your gut! You are MAMA….you know what is best.  You may fall backward, you will learn.  Although our docs and team know best, sometimes it works better to just listen to your gut.  I was told not to take my daughter out in public too often, no long outings, no travelling, and no holding from friends and family, basically keep her contained for at least 3 months.  I didn’t listen.  I felt that was silly and that she wouldn’t grow, she wouldn’t build immunity if I was keeping her contained and tucked away.  So I went with my gut, I took her out, I let people hold her and I let her live….and now, she is strong, healthy and feisty.  Mind you, EVERY SITUATION IS DIFFERENT.  I am not saying to not listen and to do what you want.  It depends on the situation and how you feel your baby is doing and how healthy they are!

What can the family/friends do for parents who have a baby in the NICU? How can they help out the most?

Be there when you need them. 

Help out at home when you are not there. 

Be a shoulder to cry on and an ear to listen.

Respect your decision making as a parent.  There is a lot that comes with being a preemie parent or a NICU parent and not just everyone understands.

Visit….NICU parents need a sense of normalcy with not being at home.  Visit them, take them for coffee or lunch, go shopping and be active in their life.  NICU parents cannot be at home, they do not have time to go out with friends and family so try to make them have a feeling of home.

That is one BRAVE mama! I hope that her honest and raw words will inspire you on your journey.

If you're a NICU mom (past or present), join the group over on Mamasoup called NICU Moms Group to share your experience and wisdom, fears and challenges, victories and setbacks with other moms going through the same things.

Having a baby in the NICU is scary and stressful, but you don't have to go through it alone, Mama.

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