Category: Down Syndrome Resources

A Parent Guide to Navigating the NICU

.Reading time 20 minutes.

We are approaching the 1 year anniversary of bringing Lainey home from the NICU. We were there 2 months. Prior to our experience in the NICU, I knew nothing about it. Both Landry and Cohen’s pregnancies (despite me feeling sick) and births went by the book. We were home within 2 days of them being born and never skipped a beat.

I recently came across a mother’s post on Instagram that sounded very familiar. She too had older kids and had gone through it all. She thought she was a pro at having babies. Until her daughter came early and was taken to the NICU. I believe they were on day 10 when she wrote her post. And she was in shock. Shock to now be in a world she did not even know existed. It sounded like they would be there for some time yet and she was trying to get her bearings for the long haul.

It brought back many familiar thoughts and feelings. So I decided to write a little “Guide” on how to navigate the world of being a NICU parent. I am by no means an expert. Being there 2 months was certainly long enough. But many have been there longer. And while the first few days of Lainey’s life were scary, after she healed from her surgery we never had to worry if she was going to make it home.

If you have followed me since Lainey was born, you already know her story. But if you haven’t, here is a little background information:

  • She was born at 34 weeks.
  • We tried to stop my labor but she was ready to be here.
  • I was in Sioux Falls for an appointment with our new team of Dr.’s at Sanford. We had a prenatal Down Syndrome Diagnosis and made the decision to leave Avera (I love my Dr. and everyone at Avera) because we knew we would have a NICU stay and Lainey would need a major surgery at only a day or 2 old. We felt Sanford Children’s Hospital was the best fit. I made the appointment to meet the new team on a Wednesday for that following Monday. I thank God I made that appointment and was already in Sioux Falls at the Dr.’s on that Monday. Dr. checked me at my appointment and I was in early stages of labor. Divine intervention right there!
  • When we realized she was going to be this early, we had a whole list of new possible complications we needed to be aware of. I am happy to say she came out crying, was 5lbs, and never needed oxygen. She was always on room air with the exception of her surgeries and during recovery.
  • She had surgery at 2 days old for Duodenal Atresia Repair.
  • The first month in the NICU was all about healing from the surgery and getting her guts to work correctly. The 2nd month’s focus was on her feeds; trying to get her to bottle more and correctly and get stronger.
  • She never reached the 80% mark (80% of her feeds needed to be from the bottle. She only reached 40%) so she had a Gastrostomy Tube (g-tube) placed.

Sometimes you know you are going to be in the NICU and other times it is a surprise. Sometimes you are there for weeks or months, and other times it’s for a couple days. No matter what your situation may be, it is not something you can fully prepare for. However, here are some tips that I think might help.

**The following come from our experience. Not everything below will pertain to all babies and families. Not every NICU is set up the same or has the same rules or policies. We were also there before COVID hit.

1. It can be scary
Even if your baby is only admitted for a day or two, it can be scary. There is an overall sense of seriousness in the NICU. Everyone is on their A game. Which was reassuring. But you know if you’re there, it’s for a reason. And it can feel scary. Seeing the wires, tubes and machines is very difficult. The first time your baby desats and the monitors go off, you will jump out of your chair faster than you’ve ever moved before. And it is scary. You might feel like it isn’t your baby laying there. You might even feel a sense of disconnect. If your baby was taken right after they were born, chances are you haven’t had much time to bond. I definitely felt like that. In fact, the first time I really felt a strong connection with Lainey was when we were snuggling right before they took her for her surgery. I had a lump in my throat watching them wheel her down the hallway.

2. Ask questions
Don’t be afraid to ask questions. Unless you have a medical background, everything is foreign (at least it was to me). I wanted to know what was happening at all times. It helped me make sense of things and feel more in control. I highly recommend trying to be there during rounds. If we couldn’t, they called and informed us of any changes or concerns.

3. Leave the room/hospital
This was hard for me at first. We slept in the room with her the first night I was released. She also had surgery that day and was still on the vent so the thought of leaving the hospital was not an option. But, I also did not get ANY sleep. If you are going to be in the NICU for awhile, you need to take care of yourself. That means getting sleep, eating well, and taking a break from the room and hospital. We took breaks and ventured down to the cafeteria. We would leave the hospital for meals. One afternoon I just needed a mental break. Not only from the NICU, but also from the new world of Down Syndrome we were now in. So I went to a few cute shops in town to take my mind off of everything.

4. Keep a daily journal
Every day after rounds the Neo’s would write up “goals for today” and stick it on the cupboards in Lainey’s room. I am so glad they did this. It included what they discussed during rounds, anything that was going to occur that day (blood draw, etc) and our goals (mostly % of feeds wanting to be bottled). I kept all the papers. I plan on taking pictures of them and making it into a book. I did not take too many videos and wish I would have done that more. At the time I didn’t think I’d want to look back on the videos. But now I would love to just to see how far she has come.

5. What you will want in the room
– Our NICU did not allow food. Our drinks needed to have a lid. They had an area in the waiting room for families to keep food. We did not really use this as we ate at our apartment, down in the cafeteria or left the hospital to eat. But many families did.

– Zach had a back pack we used to haul things back and forth. We always had a phone charger, ipad, ipad charger, notebook, books to read, lotion (your hands will be horribly dry after washing them so much), deodorant, (I’d recommend bringing extra travel size toiletries like a toothbrush, etc, if you want. Some days you are there all day and it was nice to have those things), Tylenol and Ibuprofen (for me after having baby), and any other necessities after having a baby (women you know what I mean). We had a blanket and pillow we kept on the couch. We also had slippers we kept there. It was more comfortable to be on the couch or rocking her with our slippers on rather than shoes or just socks. Heck, we even got so would just wear them down to the cafeteria. ha! Also, make sure to wear clothes that are comfortable. I wore a lot of leggings and sweaters.

6. The NICU does not follow the same policies as a typical hospital.
So you have a friend or relative that is admitted to the hospital. You want to visit them. You go to the hospital, ask for their room #, and head up the elevator to their room. You enter their room and stay until you decide you want to leave.

Not in the NICU.

To enter the NICU you must check in at the front desk of the NICU area. You will be given a lanyard with your name and picture that you must wear. You cannot enter unless a parent has given permission for you to come in. Once you get buzzed through the locked doors you will have a 3 minute scrub (hands up to your elbows) you must do first. This is done anytime you leave the hospital and come back in.

There was a list of 4 people (people we picked) that could be in the room if Zach and I were not in there. I had several people say “If you need a break, I can stay and rock Lainey”. That was greatly appreciated, but unfortunately that cannot happen unless you are one of those 4 people. And that list cannot change.

Only 4 people can be in the room at a time. And they try to limit the amount of time guests stay.

7. Each baby had their own room.
This is not how every NICU is set up. Some hospitals still share a room. I am grateful we did not need to do that! I cannot imagine being there 2 months and not having any personal space. I will also add that since families all had their own rooms, we did not get to know anybody who was also in the NICU. Everyone kept to themselves. In fact, you were not supposed to go into any other rooms.

8. They had a breast pump that stayed in the room.
This was nice so I did not need to bring my personal one back and forth. They also gave me all the accessories I needed for the one at the hospital. Nursing was not possible for me with Lainey. 😦

9. Don’t be afraid to lean on the social workers
We had a great social worker that routinely checked in on us. When we first got Lainey’s Down Syndrome Diagnosis, I needed to have answers for a lot of things; how Medicaid worked, receiving services, insurance questions, etc). And I thought I needed to figure out those answers myself. Having her to help guide me was a huge relief. That portion of it all is soooo stressful. If you don’t feel like you have someone like a social worker to rely on, request one!!

10. The NICU rollercoaster is a real thing
Some days were easy, and some days were hard. Some days Lainey did great with her feeds, and
then the next day it seemed like she took a huge step back. It could be exhausting and frustrating. The nurses told me “the NICU rollercoaster is a real thing”. When things go down, they always come back up.” It’s good to focus on the positives. Otherwise the negatives can eat you up. You WILL get home.

Being in the NICU opened my eyes to a whole new world I didn’t even know existed. I now look at neonatologist and NICU nurses completely different. They are angels on earth!!!!

I asked friends who had also been in the NICU if they had any “What I wish I knew before being in the NICU” comments. Here is what they said:

“The NICU will be the biggest and scariest roller coaster ride you will ever go on! However even in those scariest moments of your life you will come to realize that miracles also happen in NICUs. Also to take pictures of EVERYTHING for some day you or your child will want to look back at all the things that were in a NICU, as well as keep a journal!” – Jessica K.

I wish I knew… “What to expect to see when we first saw our girls. The cords were quite traumatic to see when you could hardly see your baby.” And “Things to do to stay “occupied.” I sat and watched our girls waiting for things to change so quickly. It was mentally exhausting when you just sit in their hospital room all day and/or night long.” – Lexi H.

“One of the top things I wish I knew going into the NICU was that for long-term stays you can request primary nurses. And if you do not see eye to eye with a particular person on your team speak up. It will make your stay that much easier. Another thing was that there are tons of programs in most hospitals that can help with your different needs while you are in the NICU, so if you are needing something please ask your nurse they can help you. Also if you have siblings of your new baby there are often times certain programs that certified counselors and therapists help with because it is definitely an adjustment for your other children to see their baby brother or sister hooked up to all sorts of things. So ask about resources for siblings.”

“Also note that it is incredibly hard to leave your family at home while you are in the facility. Do not disregard those feelings. They are true feelings and you are not alone in having them. Ask for help. Trade off with someone you trust and spend some time back at home as you can and as you feel comfortable. It is a relief for the siblings to have you back even for a day. And it can be very renewing for your own spirit as you head back to the hospital. I remember driving seven hours one-way back for a single day with my older children, turning around in bad December weather and heading back to Denver the next day. +14 hours or hard for my soul because it was so much thinking time but it was also good and renewing and my kids needed me and I needed my older kids as well.” – Justine K.

“I wish I would’ve known that it would be so difficult. We had quite a different experience than most, but surgical procedures and flights are just every day life in the NICU. I wish I could’ve been prepared for how truly hard it is. The exhaustion, mind racing, constantly questioning yourself hard parts. I also learned that you can ask for primary nurses to be with your child. Wish I would’ve known that before we came home.” – Taylor H.

“I had no idea how torn you’d feel about being away from your other kids but not wanting to leave the NICU. That was hard and I was only gone a short time!” – Emily B.