"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.
My eyes welled up and I began to sob.
It was beautiful.
I spent hours holding that teddy bear. It helped fill a gap in my arms. Pulling myself out of my funk, I decided I wanted to add some handmade items to future boxes. I began painting boxes, and filling bulbs with glitter and feathers, making PAIL ribbons. My husband would leave for work and come home and find me at the counter still painting. He didn’t mind though, it was the first thing that had gotten me out of bed in weeks.
Little did I know at the time, that the painting and crafting was slowing helping to heal my heart.
I eventually found a card inside the box and contacted the organization that provided the box to our local hospital, Project Sweet Peas. I was put into touch with Sarah. We talked about love and loss and how healing giving back to the community could be. I talked about our first born’s box and how much it meant to me. We met in the parking lot of the mall, I wanted to drop off the things I had made.
I didn't know why, but I was nervous. I had never met anyone else who had lost their only children before. I didn’t know what to say to her in person, even though, I too had lost all my living children at the time.
It’s ok though, we really didn’t have to do much talking, I was crying mostly and we hugged a lot.
After I handed her the items I had made, she handed me a bag. I was surprised, inside was another memory box for our second born. It matched the other. My heart felt like it exploded. More tears and more hugs followed. It was that day, and through Sarah’s kindness, that I decided to become a volunteer with the organization. It was hard at first, delivering the NICU care packages and memory boxes, but I never wanted what happened to me to happen to anyone else.
Knowing I was giving families hope, and comfort when they needed it most healed me in ways I didn’t know it could.
It got me out of bed and helped me to continue my life. It gave me purpose again.
Every day I live my life, I live it for my daughters.
Every time I give back to the community, it is a tribute to their beautiful lives. As I give back, their spirits are lifted and remembered.
Almost 5 years have gone by now. I still give back and create those memories, and give hope to the families of my community. I’m no longer just a volunteer helper, I am the Division Coordinator of the very local division that gave me purpose again.
They may not know it, but they saved my life. I hope that what I have done, and continue to do, helps save someone else’s too.
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.
Our First Delivery
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?
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:
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.
But how can pain affect our babies in the long-term?
It is possible that pain may affect long-term memory, pain perception and responses, and possibly alter social and cognitive development. Therefore it is obvious to try and address pain and stress in the NICU, especially acute and chronic pain.
Chronic Pain or Stress is much more difficult to assess, and often times may be superimposed by other types of pains like from procedures or inflammatory pain.
When addressing acute pain, due to procedures, it is important to look at the procedure itself and whether it is necessary but also if local anesthetics are available.
While morphine has been used for more serious procedures, the long-term risks may not be ideal. Other sedatives may also have other negative side effects and have been shown to show that there is insufficient evidence to recommend use of them during therapeutic hypothermia.
So if these aren’t working what can we do?
There has been a shift in approach in trying to limit the number of painful/stressful procedures and interventions as well as creating a less stressful NICU environment by involving the parents.
These includes many non-pharmacological approaches from swaddling, pacifiers, music, and family-centered care.
Sucrose has been used as a neonatal analgesia which did result in lower PIPP scores but no changes in pain specific cortical activity or reflexes indicating that it is not pain relief.
However, maternal holding of the infant has shown greater promise in reducing pain.
While this may lead to some issues where nursing staff may seem to be challenged by the parents, dialogue between nurse-parent collaboration may provide the best outcome for young ones. I
Parental participation may prove to be the one of the safest options that can be combined with other methods until more work is done in pharmacological methods where evidence supports positive outcomes.
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.
What are the best practices for family-centered care?
Dr. Smith believes that leadership starts from the top, and suggested that the leaders of a healthcare team teach by example.
"Staff want to do the right thing,” he explained, but often they are not aware of family-centered care and have not been trained in it.
We also discussed the role of “veteran” NICU parents in supporting parents whose child is currently being hospitalized. Dr. Smith believes that parents who are living proof that getting through the NICU can be done are an invaluable resource to parents whose children are currently in the NICU, providing them with hope, support and acting as a sounding board for questions that other parents may feel uncomfortable bringing up to healthcare providers.
Providing a welcoming environment and training on how to care for their child are also key in making parents feel comfortable. Learning how to care for their child and being reassured that they will not hurt the baby was especially valuable to parents and allowed them to feel more in control of the situation. Additionally, staff and parents should work collaboratively.
“Families will teach you a ton”, Dr. Smith noted.
What are some of the challenges of family-centered care?
One of the biggest challenges in the NICU in general is the previously mentioned parent apprehension about hurting their child; however, in family-centered care, parents are well-supported by staff in learning how to care for their child, helping them to “stop being scared and start enjoying their baby.”
There are some challenges when it comes to implementing family-centered care, as it is not always taken seriously and some providers dislike changing their way of practice.
When it comes to family-centered care itself, one important thing to remember is that it must be tailored to each family and family dynamic. The role of non-parent family members- such as siblings, aunts, uncles and grandparents--can vary from culture to culture and family to family. It is also important to remember patient’s perceptions of the roles of different healthcare providers--even if a team works collaboratively, parents tend to find it comforting to hear “big” news from the doctors and direct their basic questions to nurses.
What still needs to be done?
The mindset of “we’ve always done it this way” had to change in order for family-centered care to be implemented in a unit.
As previously discussed, the traditional view of doctors as planners and nurses as implementers is ineffective; the entire unit must work collaboratively. In some places family-centered care is considered a “squishy” approach and is pushed aside in favor of more traditional approaches.
Most importantly, the leadership of the unit and the administration must be on board for family-centered care to be implemented. In order for this to happen, awareness of effectiveness of family-centered care should be spread. Within family-centered care, parent apprehension needs to be addressed; staff need to address patient needs on a case-by-case basis and “nudge along” the parents as needed.
The biggest obstacle here is parents worrying that they are going to hurt their baby; staff needs to reassure them that this will not happen. “Babies are well-designed”, Dr. Smith pointed out.
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.
Abstract taken from “Miracle Babies guide and journey though the NICU.”
Written by: Sean Daneshmand, MD and Susan Newman, MSN, RN, NNP-BC
When you are a parent of a NICU child, your hero or heroes sit before you every day. Much like a fireman saving you from a blazing fire, my children saved my life. They saved their own lives and they are only 4 years old. They fought battles and won.
We are a family of warriors.
I have become a very strong woman, an extremely proud and devoted mother, and a person that is grateful for each passing day. I try my best to thank God for my children because I saw miracles happen right before my eyes. I go about my day as all other people do and I have my simple challenges and my crazy moments. I deal, I move on, and I live my life. Not everyone knows I am a NICU Mom, but I know that it makes a difference in the woman I am each day.
Every day I think of our journey at least once; every night while watching my children sleep, I thank God that they are here with me.
We are a family of warriors.
I think we all live a fairly normal life, but our experience in the NICU plays a huge role in my everyday. All five of us have both external and internal battle scars. My husband and I have memories that could most likely be compared to those suffering from post traumatic stress disorder. Sometimes, when a friend mentions anything related to a hospital experience, without invitation I immediately start telling my story and give details about my children’s stay at the NICU. The memories come flooding back and my mouth starts speaking even before I know what I am saying. I think most of my friends have heard my stories, but they just allow me to talk because it is polite and because they love me.
We are a family of warriors, but I am forever fragile from this experience.
We are a family of miracles. Even though I am tougher than I was before the NICU stay, I am still as fragile as the second the doctor told me 30%. He told me that 30% of the children with my son’s condition do not survive. I am still as fragile as the second that the social worker asked if we would like to see a member of the clergy. I am fragile as the time I was holding my breath when my son’s ventilator was removed for the first time. I am as fragile as the time that they took my son to the operating room in an isolette when he weighed less than 5 lbs. Even though I am tough, even though we are warriors, I am forever fragile because I know that life is fragile and I know that every second with my children should be cherished because they were gifts given only to us.
All that being said, I am a regular mom.
I live a regular life and I think regular thoughts for most of my days. I have the occasionally slip ups every now and then, but it’s not easy being a mother and it is not easy having triplets. People often ask me how I do it, and I know how I do it. I do it because I would never want to do it any other way. I need these three children like I need air and I know that I am not perfect but they have made me who I am and have showed me that they are willing to fight for me. I will fight for them every day.
Like any mother, I have to discipline them and teach them how to be respectful and loving children, but how do you teach the fireman who saved your life how to fight a fire? Every time I become frustrated with my children, the NICU flashes like lightening over and over again in my brain. “Be thankful for those children, they fought so hard to be with you.”
I can get over much of what the NICU imprinted on my soul. I can forget the horrible moments easily and move on because I have my children with me. There are a few things that my body and soul will truly not ever let me forget. Whenever I am in a doctor’s office or a bathroom or in the ER with my daughter when she gets croup, I have a hard time getting up the courage to wash my hands. As we all know, hand washing in a hospital is necessary and 100% disgusting if not done. However, the smell of the hospital soap brings back every fear and and every memory I ever had at the NICU. The smell makes me remember how terrified I was of every germ and how even the smallest virus or cold could make a huge difference in the lives of my children. I remember using hand sanitizer at least 100 times a day, and I washed my hands before entering the NICU until my skin was raw. I kept my cell phone in a baggie tucked in a sanitized bag. I clean every inch of my home when the babies came home and every person that came near them had ALL vaccines. I put signs on their carriers that said “DO NOT TOUCH ME”. I was scared to death every second of every day.
I am a warrior, I am fragile, and I am a NICU Mom through and through.
I have the guilt of not carrying my children to term. I have the memories of each roller coaster moment from all three of my children’s 94 day hospital stay. I have found strength in the eyes of my babies, and I have learned to be compassionate for all. The NICU is like the teacher of a class you never wanted to take. It gives you lessons that you will remember forever. Many of my memories from the hospital stays are horrible but I have a few that are great. I am forever thankful for the nurses and doctors that raised my children for those three months when I could not. I will never forget the names or the faces of the nurses and doctors that saved my son’s life especially. I know who you are, I know where we were standing when you told me the news, and I remember the love you showed me. I have met countless heroes along the way and I think I can honestly say that I am grateful for this crazy journey. When leaving the hospital with my third child a neonatologist said to me “Ya know, one thing I learned about the NICU is that every person’s journey affects them the same way. Whether you are here for one day or nine months, all parents are affected. The fear that you have is the same.”
Here’s to all my fellow NICU Mamas.
We are all warriors.
We are all fragile and each of our journeys is our own.
Do not feel weak when the smell of the soap brings you to you knees.
It is just God’s gentle reminder that we should continue to be grateful for the wonderful gifts in our lives.
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.
"Gastroschisis is an easy fix”
“If you had to pick a birth defect, gastroschisis would be the one.”
“Once we close the baby up and you go home, you have nothing else to worry about.”
These were the responses from practitioners seven years ago when at 12 weeks we found out our son, Avery would be born with gastroschisis. Now, seven years later, our foundation gets 1-2 families a week getting this same input from their physician. And it does not end up being true.
Gastroschisis is one of the more visceral birth defects in the world. The defect is a hole in the abdominal wall that can range in size that causes the intestines, and sometimes other organs to protrude out of the body. The medical community does not know what causes the abdominal wall to not close down completely around the umbilical cord as it should in normal development. The survival rate is 80-90%, with about 40% experiencing long-term complications across a spectrum.
The trends are on the upswing too- state side 1990 it was 1 in 10,000. Then in 2011 it was 1 in 2229. Earlier this year the CDC reported that in 14 states, there was a 30% increase in the disease across all demographics. However, gastroschisis is a rare disease. A rare disease is defined as a disease that affects less than 200,000 people at one time. The CDC reports that 1,871 babies are affected by gastroschisis a year. Which frustrates research- trends are up, but the sample sizes to study are very small.
This might sound like a lot of numbers to you, but they really mean everything to our population. When you are one of 7,000 rare diseases it means that the knowledge (much less correct pronunciation) on gastroschisis is not going to be pervasive. Initially, it means our expecting parents will have to travel cities away, some even states away for their child’s initial treatment at birth. That stay could be 3 weeks (on average about 6-8) or 740+ days. Being a rare disease also means our parents cannot walk into their local Urgent Care with a child who has a compacted bowel, fever or vomiting, and find a practitioner that has had experience treating a gastroschisis affected gut (and believe me, that does matter.) For any other child, vomiting and fever would normally mean a bug, for our children it could mean intussusception, volvulus, or obstruction. Things most doctors rarely see.
Simply put, gastroschisis means there are no road maps.
To test this "easy fix" idea, Avery’s Angels recently asked some of it’s 12,000 social media followers to submit a simple sample: 1) Baby’s Name 2) Date of birth 3) Date until first hold 3) Days in the NICU 4) Number of Surgeries 5) Any long term complications. We have had over 200 responses and no 2 are alike. Some families went 2-3 weeks before first holding their child, while others were in the unit and discharged in that time. Some babies had little complications after discharge, some have spent upwards of 15 years in and out of the hospital. Out of the 200 submissions, no 2 were the same.
And, as one parent put it, none of the experiences were “easy.”
With this in mind, that I could not speak about one experience for all, I asked our families to weigh into this piece. What would you want the world to know? What would you want an expecting family to know?
The overwhelming consensus was this:
Expect anything. Outcomes cannot be promised. This defect is not an "easy fix" no matter what you get handed. You never get to “leave it behind,” you’ll watch every poop, fever and vomit with caution, and with good reason. Don’t consult Dr. Facebook, know where your knowledgeable physician is, find that person and build that relationship. Ask questions. If you have to, ask the same question over and over.
You’ll be terrified at some points, and that is OK. You find out that you have a strength in you that you never knew you were capable of, and sometimes your child will lead you through that as they endure their trial. When you need to, seek support from the gastroschisis community. Even though every journey is different, there is commonality in the journey still, and it helps to know you’re not alone.
The “easy” part of gastroschisis is the love that comes, unconditionally, for a tiny baby born inside out, that teaches you how to love from the inside out. There is an amazing and fiercely loyal tribe of gastroschisis families and survivors that have come together over the years, to support one another, to help others get to the right people who can help. These are the parts where good starts to shine through. When you cannot have a road map as to where you are going, it helps to have a tribe to walk with you along the way.
We have a lot to accomplish, and an uphill climb. Gastroschisis is a rare disease, meaning the science behind understanding the disease is going to take a lot of time and effort. It means that the skill set to treat this is going to be rare too. I am not worried about it though, because the families I get to serve, the patients I get to work with- survivors and angels, are relentless. The push to make up the gaps in understanding comes with a tenacity that cannot be paralleled. Some of our moms and dads even start up a new career in medicine as nurses, CNA’s, doctors and paramedics. Even more of them take up the charge to promote awareness and research. Nearly all of them turn around to give a helping hand to others struggling through. No, no one would chose this defect. But anyone would chose this tribe.
CEO/Founder Avery's Angels ® Gastroschisis Foundation
I was exactly 23 weeks pregnant when I was at work and went into active labor. As an ER nurse, I knew that the outcome of babies born this early more likely than not was not a good one. The two days I was on bed rest were filled with terrifying discussions about "viability" and the low percentage that my child would even survive outside of the delivery room. At the hospital I was admitted to, babies born at 23 weeks and 4 days had at least a sliver of a chance. Any babies born before that were too small and too premature.
After two scary days on bed rest, I was rushed into an emergency c-section. My labor had progressed past the point of no return. I don't remember much from my time in the delivery room, but I do remember hearing a nurse shout, "the baby's moving!," being told it was a boy, then giving him a quick kiss before he was rushed to the NICU and placed on a ventilator. Ryan was born at 23 weeks and 3 days, technically not a viable baby. He weighed 1 pound, 5 ounces.
Ryan spent weeks after that fighting for his life. Because he was so early, his lungs were so underdeveloped and kept shutting down. The first few weeks he was so sick and fragile he couldn't be repositioned in his isolette. His airway was so tiny any movement could dislodge his breathing tube and he wouldn't be able to get oxygen. We sat by his isolette day and night, holding our breaths every time his heart rate dropped or his oxygen plummeted.
At one point a few weeks in, Ryan's lungs continued to shut down. The doctors threw everything they could at him and he wasn't improving. The neonatologist gave us the possibility of the grim outcome, and promised to do everything they could. We prepared for the worst scenario, but the whole time Ryan kept kicking away in his isolette and fighting harder than anyone could imagine.
Miraculously, Ryan turned the corner and pulled through. His lungs were still precarious, but every day began to look better and better. After 3 weeks, he was finally stable enough that I could hold him. Holding his tiny, less than two pound body against my chest was the best moment I could have imagined.
Ryan spent 9 weeks on a ventilator before he was able to be weaned off and onto oxygen. Multiple times, he pulled out his own breathing tube. I watched him turn blue and lifeless as they struggled to get him breathing and reinsert his tube more times than I can count. Finally, one day Ryan decided enough was enough, pulled out his tube, and never looked back.
He then spent weeks on Bipap, then CPAP, then high flow oxygen, then a nasal cannula. He had to be transported to another NICU for laser eye surgery for retinopathy of prematurity. Every day he fought, and grew, and exceeded the expectations of all of the medical staff. Finally, after 146 days in the NICU, exactly one month after his due date, Ryan came home for good. No oxygen, no monitor, and no long term issues to be had.
As I sit and type this, the miracle baby that was not supposed to make it out of the delivery room is smiling and laughing away. We are forever indebted to the NICU doctors, PAs, APRNs, nurses, and staff for everything they did for Ryan and fighting as hard as he did for the best possible outcome. I'm currently in graduate school to become an APRN myself, with the hopes of working in the NICU upon graduation and pay it forward to more tiny, incredible miracles like Ryan.
Written by: Katie Vigil, mother of Ryan