"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.

Noah Matthew was born on a rainy winter day in 2009, Pearl Harbor Day to be exact. We jokingly surmise that it was Noah’s way of warning us that it would most definitely be, ‘a day that would live in infamy’ for more reasons than one. My pregnancy and Noah’s birth were not like many others of his preemie friends.

I, of course, did what any neurotic first-time mother does, including making a playlist of songs I would like playing in the delivery room, putting headphones on my tummy with Mozart blasting to aid his brain development, reading every single pregnancy book, and anxiously awaiting the arrival of our first child. Our plans took a tailspin at the end of October 2009 when I contracted the deadly H1N1 flu (swine flu) at 24 weeks pregnant.

After a very unfortunate initial misdiagnosis at a local urgent care facility only a couple days after the onset of symptoms, I entered the hospital emergency room, and, unbeknownst to me, was already in very critical condition. After being rushed back to triage and following a flurry of activity that included multiple IV lines, a breathing mask, and several medications, my vitals continued to decline. The doctors instructed my husband and me that it was in my and our baby’s best interest to be placed in a medically induced coma for a couple days to allow my body to get some rest and not work so hard to breathe.
​
A couple days turned into weeks, and I woke up almost two months later as a new mom to a very tiny preemie baby. Over the course of six weeks, I was on a ventilator, got a massive blot clot, went into renal failure, and eventually had to have a tracheotomy placed to help me breathe on my own. As I began to wake up from being weaned from the paralytics, Noah started experiencing heart decelerations, and the decision was made to deliver him via emergency C-section at 29 weeks and five days gestation. I regained full consciousness the evening following his birth. With the help of my husband  and our nurses (and with my arms being propped up on pillows because my body was so atrophied from lack of movement for almost two months), I was able to ‘hold’ my son. That was and always will be one of the best moments  of my life.

Noah spent the next three months in the NICU, dealing with issues ranging from a close call with NEC (necrotizing enterocolitis), lung and breathing issues requiring extreme oxygen support, Gastroesophageal reflux disease (GERD), ROP (retinopathy of prematurity), growth issues, anemia, which required several transfusions, as well as hernia repair surgery in his umbilical and groin areas.  In comparison, our journey in the NICU was, for the most part, uneventful when you think about everything Noah endured while in utero. He was exposed to drugs that could have made it impossible to survive, or at the very least cause brain damage. I never thought there would come a day when I would ever say that I was thankful I went into complete renal failure, but I am because my blood was being cycled out of my body and scrubbed clean 24 hours a day, seven days a week. Because of this, Noah received only very residual amounts of those toxic drugs.

The post-traumatic stress I experienced in dealing with my own mortality and subsequent paralysis in my right foot, made things that much more stressful  and still stays with me in some ways today. I had to struggle with the notion that I was no longer this strong, independent, capable person I had been before. Instead, I counted my blessing as I sat in a wheelchair beside my  son’s incubator. And again when I held onto a walker to be able to watch  my husband change my little two-pound son’s diaper.
How would I ever be able to take care of this fragile human being who depended on me for his life when I could barely take care of myself? You  sit there in a room with beeping monitors and flashing numbers on a screen  that act as a constant reminder that your tiny little baby is not like all the others. One of the most difficult things in the NICU is seeing other babies  and their parents who got there after you did leave before you. I can’t tell you how many times I looked over at my husband and thought, “Why not us?”

Our chance of survival was less than 10 percent, but we were able to defy the odds. With the help of modern medicine, through many prayers, and by the grace of God, we became miracles. To say that I have learned to look at life and tough situations very differently would be an understatement. Despite all the anxiety,  fear, and sadness, we experienced the most special and rewarding memories.
​
The relationships and bonds we made with the nurses, doctors, and fellow NICU parents are as strong as they were all those years ago. We don’t take things like our health and waking up every day for granted anymore. We know, beyond the shadow of doubt, that the miracle of birthing a healthy child is a blessing. And most of all, we are so very thankful for all the nurses and doctors and organizations like Miracle Babies who were there for us during one of the scariest times of our lives.

If there is a support group you can join, or a way you can give back to those in the shoes you filled not so long ago, I encourage you to reach out and do something. Miracle Babies has afforded us opportunities to do just that. There is no way to be able to say thank you enough. We are forever indebted to them and the wonderful life they breathe into this community and this family of NICU warriors.

Veronica Pacheco

​Abstract taken from “Miracle Babies guide and journey though the NICU.”
Written by: Sean Daneshmand, MD and Susan Newman, MSN, RN, NNP-BC

​---

About the Author:
​Heather S. is the Mom of three miracle triplet’s Savannah, Max and Lillyana.  They were born at 28 weeks 1 day and spent over three months in the NICU.  Her son was transferred to AI Dupont Hospital For Children’s NICU at just 13 days of age where he received several life saving surgeries.  Her triplet’s just turned 4 years old in August.

Heather has been generously giving back by volunteering with Precious Kisses, a division of Project Sweet Peas based in the Philadelphia area.  She and her family, friends, colleagues and school students have be helping support families with babies in the NICU at Nemours Alfred I. duPont Hospital for Children.  She strongly believes that helping others promotes healing.  ​

Having a child in the NICU is a stressful situation. Here are some ways you can cope with this stress.

Take care of yourself: You can’t take care of someone else if you don’t care for yourself first.

Build a support system: It may be difficult to feel connected to family and friends if they have never had a baby in the NICU. It is important for you to find people who can relate to you and this unique experience that you are going through. Check with your hospital to see if they have a NICU support group for parents. If a support group is not offered at the hospital try to find an online support group so you have people to talk to who understand what you are going through.

Get Sleep: This seems pretty basic, but sometimes it is hard to do when you are worried about your child. Make sure to try and get 6-8 hours of sleep per night because sleep is important to help your body and mid recharge.

Exercise: Exercise is a wonderful stress relief and is super important to your overall health. Make sure you ask your doctor what types of exercise you can do if you have just had your child because there may be some restrictions.

Eat Healthy Foods: When you are traveling back and forth to the NICU it may seem hard to eat healthy, but eating healthy will make you feel better. Pack healthy snacks (like fruit, granola bars, and packets of oatmeal) that you can eat easily while at the hospital.

Accept help: If people offer you help, take them up on the offer. Websites like mealtrain.com and lotsahelpinghands.com can be great at keeping all the people who want to provide you help organized. Ask people to do laundry, take you to the hospital, make meals, or even care for older siblings while you focus on caring for yourself and your new child.

Journal: Being able to expressing your feelings on paper can help you cope with them. The journal can also help remind you of what your baby has accomplished and how far they have come since being born.

Relax: Spend time away from the NICU doing things that you enjoy, such as taking a walk, going out for dinner, reading a book, meditating etc. You may feel bad if you don’t spend every moment with your child, but they are being well cared for at the hospital. It is important that you take time for yourself to try to relax.
​
Therapy: If you are feeling overwhelmed you may want to seek professional help. A therapist can help you understand everything that you are going through and help you to understand your feelings. A huge benefit therapy is that its effects are long-lasting. It allows you to work through problems and develop the tools you need to help you deal with issues in the future.