The Unspoken Truths of the NICU: Top Questions Asked and Answered!
Updated: Nov 6, 2020
Happy Prematurity Awareness Month from Huddle Up Moms!
We recognize that these are challenging times and want to take the time to remember and raise awareness for moms out there who have struggled or are currently struggling with complications as a result of a preterm birth. Huddle Up Moms is honored to feature one of our favorite local moms, who is a fearless leader for this community.
Check out our top 10 NEED to know truths about being a NICU parent!
DISCLOSURE: This information is not meant to be ALL encompassing and should NOT replace seeking advice from your health care provider for specific questions, solutions, and concerns about your health! The purpose of this blog is to spark curiosity and gain some insight into your health.
1. When can I hold my baby?
Care Time
In the NICU this heart wrenching question is often answered by the words Care Time. This is what the NICU calls the blocks of time that parents can spend more intimate moments with their loving babies.
Evidence has shown that when babies in the NICU are allowed to sleep without being disturbed they have better outcomes. Care times allow your baby to rest and grow as much as possible. I know it is so hard to hear that you may only be with your baby during certain times of the day but your baby needs sleep to grow! Your provider team will discuss with you what your baby's care times will be and they are usually posted at the end of your baby’s isolation (bassinet/case). An example of a Care Time schedule looks like 8:00am/11am/2pm/5pm/8pm/11pm/2am/5am and often happens in 3 hour block times.
During care time you will do things like:
Take your baby’s temperature
Change diapers or clothes
Kangaroo care - skin-to-skin contact, holding babies nice and close! (More below.)
Breastfeed/tube feed/syringe feed/bottle feed, depending on baby
Bathe baby (Don’t worry mamas...the nurse will help teach you how!)
Parents/Caregivers and Family are encouraged to be involved in care times when possible.
This is also a great time to ask any questions you may have about your baby's care or what the doctors may have said on rounds if that happened before you arrived for the day.
2. Where can I go if my baby is sleeping, in a procedure, or between care times?
The Ronald McDonald Family Room/Ronald McDonald House - Ask your delivering hospital if they have one of these or a similar place for families.
At Carilion Roanoke Memorial Hospital, Ronald’s Room opened in 2007 and is located on the 14th floor. This room serves as a respite area for adult family members and guests of hospitalized children. It’s just right down the hall from the NICU and a quick elevator ride from the Peds floor. The family room provides a home-like setting where families can relax without leaving the hospital. With Covid, the room is currently closed, but it is usually open 7 days a week from 9am-9pm and staffed by volunteers. On occasion, the room may be closed due to weather conditions. (https://www.rmhc-swva.org/about-us/our-house/family-room/). The room offers a beautiful view, seating, complimentary coffee, beverages, snacks and microwavable meals. It has a refrigerator and a microwave as well. You also have access to the internet with computers that are provided. They also welcome donations and many families who “graduate” from the NICU continue to donate to the room throughout the year.
The Ronald McDonald House is a home-away-from-home where families can stay close to the care and resources they need, close to each other, and close to their child while they are in the hospital. They provide a inviting resting place for families that need to stay overnight. They also provide meal programs, education programs, and support services.
Eligibility varies per location, but make sure you ask your social worker or nurse manager for information if you feel you want to stay closer to your baby or child. Guest Families must reside at least 25 miles away.
If you are looking for an opportunity to volunteer please call your local Ronald McDonald House. They accept donations in the form of service, food, clothing, monetary, and time! Click here to learn more: https://www.rmhc-swva.org/
3. How can I feed my baby?
For a more all-inclusive look into breast feeding in the NICU please click HERE to listen to one of our wonderful community lactation specialists videos.
Most NICUs have a dedicated lactation consultant to support mothers of high-risk infants with breastfeeding support. They also provide you with bottles to store your milk in with labels specifically assigned to your baby. They have special freezers in the NICU just for you to store your milk in while your baby is there.
Mothers to preemie babies may encounter several challenges due to early delivery. These challenges include low milk supply, over supply, mastitis, blocked milk ducts, engorgement of breast, nipple pain and breast infections that can interfere with lactation. These are common for all women breastfeeding, but having a baby born early increases your chances. The overall benefits from breast milk are especially important for premature babies and the NICU will often ask parents if they are okay with donor milk. You may be reading this and thinking...What the heck? Many moms felt the same way, but after receiving education about the process of donation, the benefits, and the need for milk, some have decided to say yes to donated breast milk! While in the NICU, infants may also have challenges with learning to coordinate all aspects of breastfeeding. These challenges vary from baby to baby and can be complicated by certain medical conditions. The NICU consultants work in collaboration with nurses at the bedside of your baby to ensure all breastfeeding needs of both you and your baby are met. Anytime you have a breastfeeding question or issue, make sure you let your nurse know so they can have the lactation consultant come help you and answer your questions.
4. How about Skin-to-Skin?
Kangaroo Care (also called skin-to-skin) involves holding your diapered baby on your bare chest for men and between your breasts for women. It’s okay to be anxious the first time or even every time you do skin-to-skin. It may be a challenge with all wires/tubes/IV’s but the nursing staff will support and help you feel more comfortable. These are just some of the many benefits of Kangaroo care! Kangaroo care may also help baby:
Keep warm
Regulate heartbeat and breathing
Help gain weight
Spend more time in a deep sleep, more time being quiet when awake, and less time crying
Help with bonding for better chance of being able to breastfeed
Kangaroo care may help you:
Make more milk
Reduce stress
Help you bond with baby
Kangaroo care has amazing emotional benefits for you and baby. You are giving something special to your baby that only you can give. By holding baby skin-to-skin, you feel the experience of new parenthood and closeness to your baby. Kangaroo care is healing in many ways for you and baby. To learn more click here.
5. What items should I bring or have with me in the NICU?
Here are our TOP 10 recommendations:
Notepad and pen- Since you're often alone in the NICU, I made notes about what the doctors and nurses told me during our stay so I wouldn’t forget and could relay the information to my husband and family.
Insulated cup with lid and straw- As a pumping mom, it’s already a struggle to stay hydrated and fed while in the NICU. Having a lidded drink available at all times was a tremendous help. I usually kept water, but sometimes filled my cup with electrolyte drinks to help keep me hydrated.
Boppy pillow- The Boppy pillow was helpful when it came time to start putting baby to breast for feedings. It works much better than a rolled up pillow.
Robe/Soft blanket- To be more comfortable during kangaroo care.
Nursing cover- So you can be pumping anytime and don’t have to feel exposed when hospital staff may need to check on your baby.
Baby soap/lotion- The NICU will provide these things but I liked bringing my own.
Nail clippers/nail file- Nurses aren’t allowed to clip or file babies nails and they grow super fast and are sharp.
Camera/Phone- I didn’t think of the camera idea until after our NICU stay but it’s a great idea to get a cheap digital camera to leave at the hospital for staff to snap pictures while you're not there. We always had our phones for taking pictures as we were able.
Baby clothes- Our NICU provided clothes once the babies could regulate their own body temperatures and no longer need isolettes. However you may bring your own just write the baby's last name on the tag or the neck of the outfit so it doesn’t get mixed up with NICU clothes. Clothing the baby in something you bring from home can make a HUGE difference in the environment for you and your baby. It can make you feel connected to the outside world and allow you to provide something your baby needs!
Bottles- When babies begin taking bottles, you can bring your own bottles from home to try and make sure the baby will like the bottles. Some babies need slow flow nipples such as the Dr. Brown’s bottles with the preemie flow nipple and this may help with feeds if the baby is having issues.
Bottle Brush- Makes life so much easier when needing to wash pump parts and bottles.
6. Why do I feel like everyone is speaking a different language in the NICU?
Because they are! These are highly experienced clinicians ready to support and take care of your little one! Below are some helpful commonly used medical terms to know while your Preemie is in the NICU. DON'T BE AFRAID! If you don't know what it is, chances are thousands of moms before you have had the same question!! ASK :)
Here are some helpful definitions that were found on Fairview.org and WhatToExpect.com:
A’s & B’s - episodes of apnea (breathing lapses) and bradycardia (too-slow heartbeat)
Asphyxia - condition where not enough oxygen is getting to the body’s organs.
Aspiration - breathing of liquid into the lungs.
Bili lights or Phototherapy - where blue fluorescent lights are used to treat jaundice
Blood gas - oxygen and carbon dioxide levels in the blood
PICC lines - usually threaded through a vein in the arm to get meds and fluid
Umbilical catheter - inserted into the vein or artery of the umbilical stump after birth
Ventilator - mechanical breathing machine
BP - blood pressure
ML - Milliliter
CNS - Central nervous system
CPAP - Continuous positive airway pressure
CPR - Cardiopulmonary resuscitation
ET or ETT - endotracheal tube
Grams and Kilograms - measurement of baby’s weight
HFV - High-frequency ventilator
IMV - intermittent mandatory ventilation
IV - intravenous
IV catheter - small, flexible, hollow tube put into a vein over a needle
IV pump - machine use to give iv fluids
LP - lumbar puncture: a type of test were a small needle is used to take fluid from around spinal column
NG tube - nasogastric tube feeding tube that goes in the nose to the stomach
NICU - Neonatal Intensive Care Unit: the special unit to care for newborns who have extra needs
NPO - no food or liquid given by mouth
O2 - oxygen
OG tube - orogastric tube that goes from mouth to stomach
Radiant warmer bed - an open bed with a heating device
SIMV - synchronized intermittent mandatory ventilation: imv timed with baby’s breath
TPR - temperature, pulse and respiration
TPN - total parenteral nutrition that is fed straight into the bloodstream
VS - vital signs: temperature, pulse, breathing and blood pressure
7. How can I heal from my delivery and be there for my baby?
It's all about the self care mama! You need to get well so you can be strong for your baby when he/or she is ready to come home! Here are some helpful tricks!
Get Rest -Just as a baby needs rest to grow and be healthy, parents need to sleep as well.
Fuel your Body - Many new parents in the NICU struggle to maintain their own health. Eating a healthy diet and drinking plenty of water is essential to not only your emotional health as well.
Move - Being physically active boosts your spirits, releases endorphins that encourage positive moods and emotions and is a great source of stress relief during a NICU stay.
Be Still - Take 10-15 minutes a day to just breathe. It is important to take time for personal care. Whether it is a hot shower, new hair cut, reading, a nap, massage, take time to meet whatever needs are important to YOU! Stepping away from the bedside is not a luxury, it is a necessity.
ASK FOR HELP - This was my biggest issue while in the NICU. You're not alone. Talking about how you are feeling is vital for your emotional health and the health of your baby during this time. Asking for help is a sign of strength not weakness. Having extra hands to help with the to-do list will help you and your family focus on what is truly important right now - each other and your baby/babies.
Connect with others - Finding someone to talk to who has experienced the NICU journey will provide support, hope and inspiration when you need it most. Our local NICU has mentorship programs and multiple Facebook groups: https://www.facebook.com/groups/1631851183753302/ https://www.facebook.com/groups/HUM.NICU.Meetup/ https://www.facebook.com/huddleupmoms
8. How can I make the NICU feel more like home?
Personalize baby’s space
Although the NICU may be your babies temporary home for now, it can feel anything BUT homey at times. There are loud machines, plastic isolettes, monitors beeping, and it does look and feel like a hospital. This makes it hard to feel comfortable. It’s a far cry from the vision you had in your head to taking your little one home to the space your family has created to welcome them. The NICU is definitely not what I dreamed of as a new mom. So what can you do to change that?
Bringing pieces of your home to the hospital! Make sure you check with your NICU staff first because most hospitals have different policies. But here are a few ideas of things to make it feel more like home: Baby blankets, baby clothes, pictures of mom, dad, siblings, pets, family, caregivers, etc., stuffed animals, items of spiritual significance, such as prayer cards or rosary beads, drawing/notes from siblings, family, etc. There are a number of companies that make cute stickers you may be able to place on the isolette as well. Make sure you check Pinterest and Etsy for some customizable possibilities.
9. What if I prefer one nurse over another or find a nurse that I connect with the best?
Ask for nurses you like
If you’ve grown fond of one or two nurses, you can ask about having them be your baby’s primary nurses - one during the day shift and one during the night shift. Just remember some hospitals don’t allow primary nurses, but it never hurts to ask. Also on the flip side, if you have a particular nurse you don’t care for you can ask not to have that nurse assigned to your baby. It is perfectly acceptable to do this and it does happen from time to time. Regardless, this is your baby, so you should feel comfortable with the people who are taking care of your baby. The NICU journey can be very long, so make the most out of it by asking to have the nurses you prefer.
10. How can I stay strong?
YOU ARE STRONG!
You are all your baby needs because you are here, you are figuring it out, and it will be okay! The NICU can often feel like you take some steps forward only to move backwards. We know that it’s hard. Try and focus on the positives and celebrate all the small victories! It may take effort, but try to look for something positive amidst all of this. But you may be thinking, “How can there be anything good about my baby struggling to live?” Celebrate everything good that happens such as, a day with fewer bradycardia spells, weight gain, poopy diapers, first time wearing clothes, getting off TPN, getting IVs, PICC lines etc. out, takes a bottle. You definitely learn to celebrate all the little things even if they may seem weird to others all these tasks are very important for a NICU baby struggling to survive.
**BONUS** 11. Join our NICU Meetup Group!
Huddle Up Moms is proud to host an amazing new mom meetup group. For more information please visit: https://www.facebook.com/groups/HUM.NICU.Meetup
From a former NICU mom to a current NICU mom...you can do it! Think of the positives and don’t let the negatives get you down! As a nurse once told me it’s the preemie roller coaster and you're just along for the ride because you have the good days and the bad days.
Thank you for reading,
Whitney Bell Mom of girls: a 28 week preemie that will turn 3 very soon and a 37 week baby that will be 9 months very soon.
