It's a terrifying moment when your baby needs to be in the Neonatal Intensive Care Unit (NICU). It's overwhelming and can be downright devastating. Admission to the NICU may be completely unexpected, or you are already aware that your baby will require intensive care after birth. Either way, it is a scary and stressful situation.
There is so much fear of the unknown. What will happen to your baby? Who will be caring for them? When can you see your baby? The questions and concerns are endless. Your NICU team is your ally, and they are that guiding hand of support you will reach out to for the following days, weeks, or even months. 
The neonatologists, respiratory therapists, dieticians, social workers, and nurses are the experts who will help you through this difficult time. Your NICU nurses are with your baby all day and all night. They are like guardian angels and are the advocates you will be closely working with during your time in the NICU.

1. Self-care is extremely important. 
You can't take care of others if you are not taking care of yourself. Following the birth of a baby, mothers need rest, sleep, nutrition, and a lot of support. Hormones are raging, your body is healing, and you are likely dealing with pumping every couple of hours. It is exhausting. Fathers/partners often feel helpless because they do not know what to do or how to help. 
​
Tensions are high, sleep is deprived, and emotional breakdowns are common. Ask family and friends for support like helping with meals, laundry, chores, and transportation. Don't be afraid to ask; be sure to talk to your nurse too! They aren't just there for the babies but for parents too.

2. Patience is a virtue. 
There are moments in life when being patient is crucial, and your time in the NICU is one of them. You will feel like you have lost all control, which will be frustrating. You cannot control many things while your baby is in the NICU, so don't dwell on them. Take a deep breath and know that this too shall pass. Be patient with yourself, with your partner, and also your baby. 
​
NICU babies work very hard every day, especially when they are learning to eat. It takes an immense amount of energy for them to breastfeed/bottle feed. Getting all the nutrients they need without requiring an IV or gavage feedings will be their most complex challenge yet. Take each day at a time.

3. Sleep is essential for babies to grow. 
Sleep and minimal stimulation are why the NICU almost always has a schedule for your baby. By allowing babies uninterrupted sleep, they will grow and thrive. Try to arrive before your baby's scheduled feeding time. Participate in their diaper changes and temperature checks, help feed your baby, and place them back in their crib or hold/kangaroo them for as long as possible. This will allow for uninterrupted sleep. The longer they are permitted REM cycle sleep, the better their health and growth will be. 

4. Don't stare at the monitor. 
All babies will have wires placed on their body that attaches to a monitor which displays their heart rate, oxygen saturation, breathing pattern, and blood pressure. It is a helpful tool, but don't obsess over it. Not only will this cause you undue anxiety, but you will also start to depend on that monitor to tell you if something is wrong. When your baby is discharged home, you no longer have a monitor to stare at; you only have your baby's cues and appearance to let you know if something is wrong.
​
Make it a habit to watch your baby closely, especially while they are feeding. Pay attention to their breathing patterns. If you notice they stop breathing during feedings, you can gently rub their back as a reminder for them to take a breath. This will prevent them from turning dusky (the bluish/dark color that appears around the eyes and mouth due to low oxygen levels). 

5. Your involvement is vital
It may seem like you are getting in the way sometimes, but know that your involvement is important in your baby's care.  This is especially true when your baby is in the grower-feeder stage of the NICU – when they are in an open crib and are learning to breastfeed/bottle feed. However, if you do have to be away from the NICU to take care of yourself and family, know your baby is in the best hands and the NICU team will be your partner in caring for your baby.

Always remember that your NICU team is there to help. They understand the emotional rollercoaster of the NICU. They have witnessed the trials and tribulations of NICU parents time and time again. Talk to the nurses. Listen to them. You are an essential member of the team, and everyone has the same end goal of getting your baby home as soon as possible. 

I am both a NICU mom and a loss mom. My daughter Colette died at nine days old after spending her short life in an incubator.  The first time my husband and I got to hold her was as she died in our arms. 

Being a NICU mom is a rollercoaster for sure and my own mother, a NICU mom to my younger sister, told me just that when Colette was first born.  Her advice was to just hold on and to know that starting a day off badly did not mean it ended badly and vice versa.  She said it is a lot of ups and downs every day.  I got a lot of similar advice from other NICU moms, nurses, doctors, and the like, but the one thing I never remember hearing was that she could die.

You are a new mama, not to just one, but two. You are probably surviving on caffeine and baby snuggles, with minimal sleep. This being said, your number one goal for breastfeeding will be to help keep up your supply.

How to keep your supply maintained:

Feed yourself: Make sure you’re eating a balanced diet! Lots of fruits, veggies, protein, & whole grain choices. While breastfeeding be sure to add in 500 calories, your body is doing extra work!

Keep Pumping!: By pumping in between feeding sessions, you are stimulating milk production. It can stay fresh in the refrigerator for 24 hours, or if you’re not using that much yet, pop it in the freezer to save for when you need it.

Drink up!: Don’t go overboard with caffeine (eek!) and try to drink enough nonalcoholic fluids. You should try to have water whenever you feed, during pumping sessions, or whenever you eat Sleep!: This is a hard concept for a new mom (especially a twin mom!) but it’s so important to try and get enough sleep. “Nap when baby naps” may not hold true for twin mamas, so be sure to accept any and all offers from your partner, or any other friends or family members that offer to help.

Handling Breastfeeding & Medical Devices at Home

Your babies may still come home from the NICU with an NG tube or g-tube. You can attempt to breastfeed whenever they are hungry, or you can give them extra breast milk through their tube.

There are some occasions where it may not be safe for a baby to breastfeed if they cannot swallow well. If this is the case for your baby, do not offer breastmilk outside of their feeding tubes until your doctor says it is safe to try other methods. You can still hold them during feeding and offer a pacifier. This will help strengthen your bond and help them adapt to feeding.

About the Author:

Krystal Workman is the inventor of the TwinGo Carrier, the first ergonomic twin baby carrier and the TwinGo Nurse & Lounge Pillow, a feeding pillow designed to support both twins and mamas. Her inventions were born out of personal necessity to care for her own twins, and as a way to emotionally heal from the touchless first few days in the NICU. Today, TwinGo has helped more than 10,000 families around the world keep their babies close.

"Knowing I was giving families hope, and comfort when they needed it most healed me in ways I didn’t know it could. "
-Krystal Roark, Division Coordinator
Project Sweet Peas - Greater Lafayette

When I speak of my NICU experience, sometimes I am brushed off. 

Why? Because my NICU experience wasn’t a long one. It can make others uncomfortable.

​My NICU experience ended after 8 days. It didn't end in the joyous day all NICU parents look forward to for us. It was the second time that week we were told our daughter had died. 

Just 7 days earlier our oldest twin didn’t make it either.

We stood there in shock as we looked around at all the isolettes filled with babies. Our monitors were silent, the screens turned off.

​It was like a bad dream looking down at the tiny, fragile, body of my daughter laying there. No tubes, no monitors, just her looking just like her sister did 7 days earlier.

They carefully wrapped her in a blanket and handed her to me. I rocked her and held her close feeling her skin grow colder. I used every ounce of my will to try and warm her again, but it didn’t happen. Nurses and doctors came in and talked to us about various things. I really don’t remember much, I was too busy trying to memorize every detail of her face and hands.

​I just sat there and rocked her. Rocking, rocking, rocking.

When it was finally time, I placed her back in her isolette. I didn’t really know what else to do.

What was I to do? They don’t really prepare you for this, nothing does.

I kissed her for the last time, and my husband and I left holding each other up.

I spent days in a waking coma trying to process things. Finally, I had to go through all the stuff from the hospital. All the gifts and other things sent to us.

As I was going through them, I found a green bag with Project Sweet Peas on it. At first, I had no idea what it was. As I opened it, I saw it was a memory box for our first born. It had a little hand mold in it of her hand, tiny diapers, a teddy bear with a Pregnancy and Infant Loss Awareness Ribbon t-shirt on it, forget-me-not seeds, and so much more.

Learn more about Krystal and Project Sweet Peas by visiting: projectsweetpeas.com/Greater-Lafayette.

​From Mini to Moose is a unique company that was recently founded by two NICU moms who are trying to make a small difference throughout the NICU community.  Inspired by the premature birth of our daughters we both had a strong desire to become more involved in helping other families within the NICU community. After throwing around the idea of forming an Etsy shop, centered around the needs of the NICU community, the idea of taking some of the special onesies that we would be creating into local NICUs was born.  From Mini to Moose the Etsy shop soon became only one piece of the puzzle and “From Mini to Moose - Special Delivery" was born. In order for us to make this idea a reality we reached out to family, friends and others in the NICU community for support.  The response was overwhelming to say the least and over the course of two months we have received the materials needed to create over 400 of these special NICU onesies .
 
In order for you to understand why we have a drive to make a difference in the NICU community you'd need to understand who we are. In college we were acquaintances who dated college roommates, and were in the same circle of friends.  Fast forward a few years, we both married those same college roommates, and were expecting little girls! Samantha was expecting her first at the same time as I was expecting my second.  In March of 2016 Samantha gave birth to her daughter Madison at 27 weeks. Maddie Moose as they called her only weighed a mere 1 pound 15 ounces, and would spend the next two plus months in the NICU. Ironically, a month later, I too found out my pregnancy was going to result in a premature birth and I gave birth to my daughter who we called Quinny Mini was born at just 28 weeks weighing a mere 1 pound 12 ounces. 
 
During this stressful time period I had reached out to Sam with many questions about what to expect in the coming months, and she became a true confidant, and friend.  We often talked about things going on in the NICU, and the emotional journey we were both on.  When friends and family would ask how my daughter was and I would always say “good” because I just didn't have the energy to explain, yet when Sam asked I would tell her every detail about my day, knowing she was the only other person really understood. 

The inspiration behind From Mini to Moose began around Mother's Day of this year.  Mother's Day happened to be one of the holidays my daughter Quinn spent in the NICU, and I wanted to do something special for the Moms who would be spending time in Quinn’s NICU during that holiday this year. Sam and I often talked about preemie items she could include in her online Etsy shop, and as I often did I reached out to Sam for ideas of things that I could do. Sam had previously created a onesie for Quinn that said #preemiestrong, and somehow the idea of creating NICU inspired bodysuits was brought up.  Sam was obviously on board with helping with the project and loved the idea of giving back to the NICU community.
 
That week she spent hours helping me create 22 onesies for Quinn’s NICU. After dropping off these onesies we both felt awesome about giving back to the NICU community, and couldn't shake the accomplished feeling that we had.  We realized that this tiny gesture meant so much to other Moms going through a really difficult experience much like we had.
​
After our “Special Delivery” A few NICU Moms who received bodysuits reached out to us telling us how much these little onesie meant to them, and from that point on we knew needed to continue our Special Deliveries. 

To date we have already completed our Mother’s Day Onesies, 4th of July onesies that encompassed three local NICUs, and have created the majority of beach themed onesies that will be needed for our August delivery. We have big plans for many more upcoming months throughout the year, and eventually we would like nothing more than to expand From Mini to Moose Special Delivery into the majority of NICU’s throughout the Tri-State Area. 

​We hope that through our monthly project Mini to Moose Special Delivery, that we will be supporting other NICU Moms in any way that we can, even if that means just bringing a smile to their face on special holidays.
​
Are you also interested in giving back?  See our Facebook page for more information! where we donate custom onesies to the local NICUs (for more information visit our Facebook Community page). 

ONE of the earliest feelings of my life in the NICU was being separated from my baby. This feeling still prevails within me as I am writing this blog. This feeling of separation can only be felt deeply by the families who have gone through similar trauma in their lives.

Each one of us ended up in NICU expecting the unexpected. 

Initially, it was very hard as parents--both me and my husband wanted to be with the baby. At that time, I just wanted to hold my baby close to my skin--in my arms and never let him go. The acknowledgment of the separation feelings were important at that time.

Every day my other kids would rush towards the door expecting our new baby to come home that day. It was painful to tell them that baby was not coming home yet.

A mother's bonding sprouts the day the woman is told that she is expecting. It is a wonderful feeling. During pregnancy you think about what the baby will look like, his birth, first eye contact, first skin-to-skin contact, first touch of holding tiny fingers--all of these are crucial  for the families. 

In the end, I must say that I am forever grateful to the NICU for letting moms and dads hold babies' hands, use the skin-to-skin method and their cradling program. These programs helped to ease separation and develop a healthy normal bonding with the beautiful child.

What was the first feeling you had when you were in the NICU? How did you bond with your baby?
 
Blog by
C

By Steven Lam
​
When our babies are in the NICU, it can be greatly stressful for everyone involved. Our babies may often be stressed due to maternal separation, noise and bright lights, procedures, and other events.
 
The types of pain that our babies can experience in the NICU include:

1. Acute pain (e.g. from procedures)
2. Post-operative pain
3. Inflammatory pain
4. Visceral pain (e.g. from a UTI)
5. General chronic pain 

Like most infants, preterm infants also have pain responses, although they may be immature and less localized than in older infants. They often experience hyperalgesia (exaggerated pain responses), allodynia (pain from things that are not normally painful) and a longer latency in their responses.
 
These pain responses include physiological changes like heart rate, blood pressure, and oxygen levels, and hormone responses. They may also display behavioral signs of pain such as changes in their facial expression, body movements and of course crying.

However, it is important to note, that not all responses, like crying, moving, tachycardia, and perturbations in blood pressure are pain responses. Therefore it is important to properly assess infant pain.
 
Most Neonatal Pain tests usually evaluate for acute procedural pain, and not for discomfort or chronic pain because immature infants have inconsistent responses.

​One such test is the Premature Infant Pain Profile or PIPP score. The PIPP score uses gestational age, behavioral state, heart rate, oxygen saturation and facial expressions such as the brow bulge, eye squeeze, and nasolabial furrow.

By: Elizabeth Payne
​
Dr. Vincent Smith has practiced neonatal and perinatal medicine at Beth Israel Deaconess Medical Center in Boston for over ten years. Dr. Smith is a big proponent of family-centered care, an approach that encourages heavily involving the families of NICU patients in the care of their babies.

We had the pleasure of speaking with him recently on the value of family-centered care.

Tell me about your experience with family-centered care models.

Dr. Smith explained that one of the big advantages of family-centered care was having extra sets of eyes on each patient, watching just that patient.

Families, he said, “are getting a PhD in their baby”.

They oftentimes notice changes, both positive and negative, before the staff, and are able to notify their child’s providers about any such changes.

“Moms are the first to know,” he noted with a smile.

One of the ways he has tried to encourage family-centered care is having parents go on rounds with providers, making them a part of the healthcare team instead of an extension of the patient- this has resulted in a higher satisfaction rate among families.

​Family-centered care encourages parent/child bonding, and gives the parents more understanding of what is going on and gives them some degree of control during a confusing, tumultuous time. With support and understanding of what is happening, parents become more confident in caring for their child.

"It’s a beautiful thing when people stop being scared and start enjoying their baby,” Dr. Smith said.