NICU Survival Tips – What worked for Us
How We survived the NICU
It is my sincere wish you never need any of these NICU survival tips. This isn’t necessarily the best way to do it, it just happens to be how WE did it and what worked for us. This is long AF, but writing it really helped me work through some of my feelings about what we went through during those long seven weeks..
Here is a breakdown of my hints:
- Visit First (if possible)
- Meet the Doctors and Staff
- Consider not sleeping in the NICU
- Wash Your Hands
- Ask a Million Questions
- Paperwork and Materials
- Self Care and Family Care
- Breast Milk
- Be Hands On
The first time I touched one of my twins – 24 hours after they were born.
Visit First
Visiting – Many/Most families who end up in the NICU never contemplated it. Because we knew ahead of time we scheduled a tour and meeting with staff several weeks before our sons were born. The unknown is always scary.
Meet the doctors and Staff (see my last post about Staff)
The first time I held my tiny little guy. 2lbs 10 ounces of fighter.
The Neonatologist we met gave a more optimistic view of Baby B’s chances than the Fetal Specialist. At the time I was so worried I thought the Neonatologist was just blowing smoke up my ass. She seemed too nice, too hopeful. I couldn’t trust to hope*. The fact that she was right and the other doctor was wrong provided weeks of entertainment for the nurses and staff. The Fetal Specialist would come to the boys room and stand there holding his chin. He LOVED that he was wrong but was clearly not used to the sensation. It turns out that Neonatologists are all sunshine and lollypops because they must be in order to survive their job.
We decided NOT to overnight in the NICU.
Theoretically, we could have slept in the boys’ rooms.
Pro: you are close to your little one.
Cons: Sleeping in the NICU is an euphemism; you get a curtain between you and nurses working around the clock, constant noises and zero privacy.
If you can, Sleep at home. Ronald McDonald House is an amazing resource if you cannot – we lived more than an hour and a half away. Your social worker can help tremendously with connecting to them. We ended up at a Holiday Inn Express about a mile from the hospital with a reduced rate. If you have no RMHC in your area ask hotels about ‘medical rates‘. A hotel afforded me a comfortable place to sleep and heal. A place where my family could stay when they traveled to the city to see the boys. I could pump in peace. I could eat a free nutritious breakfast. Somewhere I could do laundry.
What a horrible reality it was to wash preemie clothes gifted to us by a family friend in an Holiday Inn Express. No one plans to buy Preemie clothes. We were grateful for the clothes bank at the hospital and for our friends who passed on their own tiny things. For me it was continuing a legacy of NICU grads to give these things back to the clothing bank when we left.
Respect to the families who’s babies are at NICUs that don’t allow overnights. Respect to families who have no choice but to stay at the hospital. And so much respect to the families who MUST go back to work and care for other children at home.
Become a Hand-washing maniac
WASH YOUR HANDS IN THE HOSPITAL AND OUTSIDE OF IT CONSTANTLY. If you catch a cold while your child is in the NICU you should not visit. DO NOT LET ANYONE visit who is sick. NO MATTER WHAT. I don’t care if Great Grandma wants to come, if she has a sniffle show her pictures. The hospital will teach you their hand-wash protocols. Learn them, love them, enforce them. Then use hand sanitizer EVERY SINGLE time you enter or leave a room. Pump on your way in, rub rub rub, wave to dry, repeat. Sanitize after you touch your face, or something gross, like a cell phone. Sanitize your cell phone.
The first time my boys met each other. Ask for moments like this. Ask for everything you need.
Ask a million questions
But I felt better when I knew things. The nurses taught us what different readouts meant on the equipment. Ask to do things for your little one, change diapers, take temperatures, feed bottles. Ask for as much kangaroo care (skin to skin contact) as you want. Ask for Daddy to do it, or Grandma, or your best friend. Ask medical staff to call you when things change with your little one. When you arrive ask how the night/day went. Ask what questions you should be asking. And write stuff down. My mind was a sieve. If I didn’t write it down, it didn’t happen. Ask for help. I wish I had asked sooner to have my boys ‘visit’ each other. Ask for your little ones to be dressed in the special outfits you got so you can take pictures.
I wish we had known we could have the boys together sooner. They were in adjoining rooms, but holding them both was scary and sublime. By several weeks into our stay they were spending a lot of time together.
A caution about questions
Being so physically close to other families in your same boat engenders a false sense of shared intimacy. Be cautious and respectful of other people’s private medical information. Do NOT ask nurses or staff to tell you about the baby across the hall – it is a HIPPA violation for them to do so. When sharing common space with other families be aware that they may not want to answer questions about their child’s health. “Are you having a good day?” is a nice way to invite a confidence from a parent without crossing a boundary. It helped to talk to other parents but be aware of over sharing or being too inquisitive.
The March of Dimes provided these Baby books which are a treasure to me now. It helped me organize my thoughts and record things I would have forgotten.
Paperwork and Materials
You will get showered in Paperwork with a NICU baby. Keep it all. Read as much as you can. Absolutely read the NICU’s handbook. There will be rules that are sometimes not intuitive. No eating in the rooms, for example. No flowers in the NICU.
The March of Dimes provided a lovely set of bound information for us. A wonderful Baby Book that helped me record regular old Baby Book type stuff but also helped me process some of my feelings by prompting things like “Today was a bad day…. this happened….” or “On this day _____ for the first time.” It was a great place to record the names of wonderful staff. It has open space for journaling – I wrote messages for my sons there.
While it is kind to send flowers, they were not allowed in the NICU. Security would generally hold them so you had the opportunity to take them home rather than send them back. They cheered up my hotel room.
Self Care and Family Care
If you are spending more than a handful of days at the NICU, go OUTSIDE.
Even when it was freezing my husband insisted on going out in the sun. Ask staff where to find a nice spot for lunch. Spring happened while my sons were in the NICU. Getting some Vitamin D and watching the rebirth in the park across the street was healing. I HATED it then. Really and truly hated it. He had to drag me out for the first few weeks. But I am glad I did.
The baseline stress level in the NICU is HIGH – regardless of your child’s condition. The simple act of going outside and sitting on a bench grounded me. Going for walks improved my physical (healing from a c-section) and mental condition. After the first few weeks, I walked from the hotel to the hospital in the mornings.
Get as much support as you can – now is the time to ASK for help
Our friends in the city fed us most nights. They had a newborn at home. I cuddled him while his mother and I moaned about pumping and sore bodies. We would hug and bump swollen giant new mommy boobs and both say ouch. Being out of the hospital was full of conflict. When our son was intubated we found out by phone. But I would have fallen apart even more if I watched them doing it. Let people pamper you. Be good and gentle to yourself even when you don’t want to be. There is an instinct that constant vigilance and a little self punishment will somehow benefit your baby – it won’t. I met a mother who had not left the NICU or even the HOSPITAL for nearly 4 months. I am grateful my husband is someone who put a HIGH priority on my mental health, even when I couldn’t.
I spent so many nights cuddling with this little man while my sons were in the nicu. Holding a chubby healthy little boy was SHOCKINGLY healing for me. This pic is from a few weeks after they came home and were all together for the first time.
NICU Dads – And Other Moms – And Siblings – Family Care
The woman who gives birth is often the focus of the NICU stay. But other parents have a hard time too and sometimes get overlooked. Especially when they have to go back to work and ‘real life’ and only can visit sometimes. It is easy to focus all your energy on your little one while they are in the NICU. But your whole family are NICU grads, Moms, Dads, Siblings, all of them. Depending on their age, siblings may or may not be allowed to visit. They may struggle as much as Mom and Dad. Make sure they are getting the support they need.
After weeks and weeks my boys were able to nurse and bottle feed. The tiniest of the Doctor Brown’s Bottles dwarfed my son.
Breast Milk
If you can, pump breast milk for your little one. Our NICU provided sterile bottles and equipment and rented us a pump to use in the hotel. They had a pump in our rooms and places to wash equipment. They made it as easy as pumping every three hours can be. Breast milk is proven to reduce the occurrence of one very scary NICU complication called NEC (DON’T GOOGLE IT). I’m not a huge “Breast is Best” person. Fed is BEST. But do YOUR best while your little one is in the NICU. The nurses applauded every single drop I brought. Each day I left with empty bottles and labels and as the weeks went by I brought more and more back to the hospital where they froze it. We left with a cooler full.
At the time, pumping was the ONLY thing I had control over.
It was a concrete way for me to feel like I was doing something for my boys when all we could do in the NICU was sit and watch anxiously. It was something to obsess over and worry about instead of being anxious about my sons. My goal was to pump while they were in the NICU and then nurse them when they came home. It didn’t work out that way (Read about my exclusively pumping for 18 months here), but small goals added up to big ones over time.
If you are pumping, set up a routine. I would hit the NICU 20-30 minutes before feeding. Grab a GIANT cup of water and crushed ice. Pump, drink, and wash your gear. Then we would help feed the babies. For sure the boys learned the sound of the pump, smelled the milk, and began howling when I turned it on. Over the course of 7 weeks I became so conditioned to this routine that the simple act of walking in the NICU doors caused my breasts to fill with milk.
Kangaroo Care helps NICU babies regulate their temp, regulate their heartbeat, and helps Mom with milk production.
Be hands on
I will never forget the nurse who looked my husband dead in the eye and said, “You’re gonna change this diaper, aren’t you?” He jumped up and she patiently walked him through his first diaper change EVER. It was tricky to get comfortable changing a diaper on a 2 lb 10 ounce baby with IVs, feeding tubes, and monitors. He started in the Preemie Extra Small diapers, they were so tiny. It’s hard to believe there was even a SMALLER size.
Find out the correct and safe way to move your child out of the isolette. The more skin to skin contact you can give your little one the better. Doing this in a robe was most comfortable for me.
The tiniest diapers I had ever seen. I took this pic the day one of my twins graduated to the next size diaper. In the NICU every diaper was weighed to measure urinary output. Pampers cared for our sons from Day One and continue to do so.
Be there for feedings
Whether breast milk or formula they will account for every drop of food your baby eats. Their first feedings after 10 days of ‘gut rest’ were measured in milliliters (DROPS) and through a feeding tube. I’ve bottle fed dozens of infants. Bottle feeding preemies was tricky and took literal training from the Occupational Therapists.
Ask which other daily tasks you can participate in
Before feedings we helped get the boys vitals. AKA we took their temperature. It’s amazing how pissed a baby can get about a thermometer held in their armpit. When they were large enough for a ‘real bath’ it was a delight. One of the first times I felt like a real Mom. When we slid baby A into the pink wash basin (you know the one) he relaxed so completely it was amazing. Not only did we learn essential skills for handling our tiny guys we finally got to be parents. It’s hard parenting in the bizzare isolation of a crowded hospital
UP NEXT Life After the NICU
As unlikely as it may seem at the time, one day your little ones will go home with you and become NICU GRADS.
*giant LOTR nerd alert. When things were very bad I would tell myself ‘do not trust to hope, it has forsaken these lands.’ I should have been WAY more upbeat. But it was a dark time.
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