When my twins were born at 28 weeks, I was unprepared to deal with life in the NICU. I had never seen a premature baby. I had never toured a NICU. I didn’t know how much trauma a NICU experience could create. As I was wheeled down the hall to the NICU to see my tiny babies for the first time, after 8 days of hospital bed rest and an emergency c-section, it was all so surreal. I felt completely hollowed out. I was empty from all the years of infertility, from the guilt that this early delivery was perhaps my fault, from the realization that my babies might not survive. I had been unsuccessful at getting pregnant and staying pregnant, I couldn’t deal with another failure.
To fill this void inside me, I needed some control over what was happening. I decided that I was going to be the best preemie parent that I could. If the nurses wanted me to pump every 3 hours, then I would pump every 2.5 hours. If it was advised to visit your baby in the NICU frequently, then I was going to be there every day. From the outside, I was the ideal preemie mom. I came to the NICU every day and stayed for many hours. I pumped, changed diapers, and kangarooed both of my babies. But the only way to project this ideal was to detach emotionally and become a NICU “mombie.” To cope with the anxiety, fear, and grief, I didn’t allow myself to connect. I went through all of the motions, but none of the emotions. In fact, during our 65 day NICU stay, I can recall crying just one time. Since my twins were in a traditional open-bay NICU I spent many hours a day in close proximity to the nurses. And yet, no one ever asked how I was feeling, or what I was doing to process this experience. There were no support groups and no past NICU parent visits. Since I appeared to be functioning, even thriving in my new role, and fulfilling my duties as a NICU mom, I wasn’t on anyone’s radar.
After discharge, I had two babies under 5 lbs to care for. I had never even roomed-in with them, so needless to say, I didn’t have a lot of time to process my feelings or heal from the trauma of the NICU. It wasn’t until several years later when I began the creative process of writing my first book that I was able to turn the fear and trauma into something beautiful and positive.
Looking back now, with the wisdom that you can only gain through hindsight, I really wished someone would have told me that it is ok, to not be ok. In fact, holding all of the trauma and emotions inside is not what is best for anyone. As silly as it sounds, I really needed someone to give me permission to be a mess. While your baby needs time in the NICU to learn, and grow, you need time to start to process the trauma you have been through and to begin to heal. It won’t happen overnight, but I believe that it can happen. I’m not sure who needs to hear this, but from one NICU parent to another… it is ok to not be ok.
Bio:
Ali Dunn is the founder of Me Two Books and the author of four children’s books: I Was a Preemie Just Like You, I Needed the NICU Just Like You, One of Two, a Twin Story about Individuality, and The Career Explorer: An Introduction to Career Development and STEAM Careers. She is also the creator of an ecourse for parents about Career Exploration. Ali is the chief mom officer of identical twins born at 28 weeks via emergency c-section. You can connect with her on her blog, Twitter, Instagram or Facebook.
I had a friend that didn’t want to see pictures of my baby in the NICU, hooked up to wires and tubes. It was too “graphic”, she said. My baby spent 45 days in the NICU. If you don’t want to see these pictures or hear this story, you’re not interested in knowing us at all. Because it has shaped us and changed us…They brought me these pictures after my son Mason was born, it would be two days later before I went to see him. They take these pictures for moms whose babies are sent to other hospitals, for moms too sick to visit the NICU, (in my case with preeclampsia on magnesium sulfate), and most importantly, they take these pictures in case your baby dies. I was denied a chance to mother the baby that I had carried for 28 weeks and the pictures didn’t fulfill that need.
That’s why you get up and force yourself to walk after that emergency c-section, those pictures are motivators, you keep them close by-especially after you’re discharged, to look at until you can come back to the hospital to do skin-to-skin, to look at when you’re at home pumping and have no baby to get your milk to letdown, to look at as soon as you wake up as you call the hospital for the doctor to tell you how many times your baby stopped breathing through the night, and as you get dressed to go back everyday for 45 days-or longer. There is no way you can go through the NICU and be unchanged.
You’re either trauma scarred, thankful and blessed, or both. I’m both. I’ve changed. I’m a little over-protective. I’m a little germ phobic. I’m a little over permissive…sorry…not sorry. This little guy in this picture took seven years to conceive, survived a miscarriage of his would have been triplet siblings, and then survived the a’s and b’s after being born far too early at 2lbs and 11 oz. He survived with just a touch of retinopathy of prematurity, asthma and sensory issues. The first meeting, first breastfeeding, first bath. These snapshots remind you of the family and friends, kind nurses, doctors, social workers, lactation specialists that were by your side. They remind you of what you’re thankful for. Specifically, I want to thank the maternity and NICU staff at Northside Hospital and to Graham’s Foundation for helping us through one of the toughest times in our lives. These pictures tell our story. This smiling happy child of mine almost wasn’t. Thank God for allowing these snapshots in time.
15 years ago, my life changed after giving birth to my daughter Grace, at only 24 weeks. I had a high-risk pregnancy, that lead to an early preterm birth, I never imagined that grace would be born 16 weeks prematurely, I wasn’t prepared for any of the challenges that would lie ahead. After 9 months in the hospital, we finally brought Grace home. We would first learn how to care for all of Grace’s needs. Grace would need a tracheostomy, feeding tube and a lot of other equipment, to come home safely. Grace was a fighter and survived through some of the most diffcult times of my life. When I look back at those trying moments, I often wonder, how did I ever make it through!
Having a preemie changes your life. After bringing Grace home, I felt like I became a nurse overnight. Grace has so many medical complications, one after another, that I had to make some tough choices through the years. Those choices really impacted me, that I felt physically and emotionally drained. Life is full of challenges. Just that some of those challenges can be difficult to cope with. For years, Grace had health issues that lead to many hospital and clinic visits. Along with having one respiratory cold after another, it would take her weeks, and even months to recover. She also had developmental delays. Another whole new world for me. Having a child with special needs can change the dynamics of your entire family. Some many wonder how did you make it through? Or what did you do to cope? Everything that I had worked hard for up to this point; my dreams, education and my career rather, would now be pull off to the side. I didn’t know what the future held. I turned to writing, and it became very therapeutic for me. Writing down my thoughts helped me realize that there was a reason why we went through what we did! I was praying for a miracle, and writing to help deal with all the decisions that had to be made. I knew at some point in my life, I would want to share this information, and this was my way of letting others know that they are not alone.
After a long road of writing rough drafts, and the devastating news that my mom was dying, I finally took my journals to a new level, and began writing my story. I made a promise to my mom that one day, I would get “Life with Grace” published. After watching my mom fight for her own life, I knew that my book would be the center of helping others cope through their own trials of life. The writing was my way of moving forward, and it was something that I enjoyed doing since I was young. Why not do something with the information and experience I went through. I believe when something happens to you, that is so life-changing, it is important to find an outlet that makes you happy. You need to challenge yourself. I felt exhausted through the years, that I described it as a “preemie vet” going to war, fighting for your child’s life over, and over again. You become a “warrior”.
My hope is that many will be inspired by my book and motivate them to not give up on their own dreams. I want to challenge many to keep on moving forward. Just because my life changed many years ago, that didn’t stop me from doing something that I love. In fact, I feel what I did endure through the years, mas motivated me to share my story today and write a book about it.
Years ago, if someone had asked me if I would consider writing a book about my story, I would have thought they were crazy! I didn’t have time to even keep the food warm on our table. I was always needed in so many different directions. Don’t let these roadblocks stop you from being happy. You too can do something that you have a passion for! People need to feel inspired by others, in order to feel challenged in their own lives. I hope my book provides just that. Now is the perfect time in my life, to start giving back to money of the organizations that helped me years ago. I feel honored by all the opportunities that have cone along through my book. I have a passion for helping people, and this is my way of giving back. I am so thankful. I always believe that things happen for a reason, and I know now that my book will impact many. I am incredibly grateful for that.
Here is the letter I gave to all of the wonderful women I hung out with for the past 44 days… Dear all of our NICU nurses,
For many, bringing a new baby home feels like the beginning of a new story in their lives. For us, while bringing Luca home might be a new chapter, it certainly isn’t the beginning of his story. His story began long before he made his entrance into the waiting arms of what seemed like a swarm of nurses. This part of his story, the NICU part, is woven together with the people we have met; the woman in the teal scrubs that would become our friends, if even for a short time.
At 20 weeks, we found out our baby was measuring small and had a possible heart defect. We were sent to a specialist, where over the next 12 weeks I accumulated a litany of ultrasound pictures and very little good news. I learned new words every week as our baby seemed to develop new issues, new concerns, new percentages that were lower and lower than the previous measurement. Screenings and tests and ultrasounds, each one scarier than the one before. We met with the genetic counselors, a fetal cardiologist and a NICU doctor to prepare us for what was inevitably going to happen. There was no doubt our baby would be born early; the question was how much time did we have.
When I started bleeding in early September, I was worried but optimistic. When I bled the following weekend, reality started to set in. When I bled 4 days after I was a discharged for the second time, I knew I was walking onto the 3rd floor of the hospital and not walking out for potentially two months. But after only two weeks, eight bleeds and far too many bedrest and clear liquid diet days, our baby boy decided to come rather quickly into this world, surrounded by women in teal. This is where my NICU chapter started.
From my admission on September 19th to Luca’s discharge on November 15th, I was surrounded by nurses everyday. And so I feel like my 57 days, 44 of those in the NICU, qualifies me to say this:
You Matter.
When you meet the moms of these small babies, they come tired, physically and emotionally worn out. They have worked for 32 weeks to parent their other three children, work their three jobs, go to way too many doctor appointments, prepare to leave their family at any day and keep a baby growing inside them. They come already having mourned the loss of two babies in the span of a few short months and even when a heartbeat is found, the feeling of emptiness and fear has settled so deeply it still has not dissipated. They come being told their baby will look a certain way, not be like their sister and brothers, have a disorder or disease or deformity or d-something. They come still waking up at night thinking they are having a bleed so bad it gives the nurse another nightmare. They come with their lives feeling out of control. They come helpless.
And they are greeted by you. You Matter.
You care for their baby. You explain the beeps and the wires and the tubes and the machines. You bring them chairs and pillows. You reassure them. You bring them tissue when they cry and friendship when they feel alone. And the greatest gift of all, you give them kindness and warmth when their reality seems to be nothing but cruel and cold.
The NICU is meant to be a place of healing and the longer I spent in there, the more I realized the babies weren’t the only ones being healed.
To all of you, the NICU is where you work. To the moms that enter those doors, the NICU is our child’s first home. And you are the ones that keep that home safe, filled with love, and running like a well-oiled machine. You are their moms when we are not there. Sometimes you act likeour moms when we are there, which we need. The responsibility you have taken on is great; the love and kindness required of you is even greater.
Thank you.
When walking into the NICU simply feels like work, remember how much you matter. You matter to the babies. You matter to the moms. You matter to the husbands who have no idea what to do with their hormonal wives and seemingly breakable babies. You matter to the doctors as you explain each baby in ways labs and x-rays never could describe.
Luca has a life and a future because of you. Thank you for mattering so much in our lives. May you continue to matter in so many more.
by Jade Edwolt on the birth of her twin girls, Keeley and Kambry at 22 week and 1 day gestation. Currently the youngest surviving twins in the world.
I’ve been thinking about their birth these last few weeks with their birthday coming up in the next few days. The first few days, I had never seen anything like the way Keeley and Kambry looked the way they did when they were born; the pain of seeing them that way and that they were thriving basically clashed together for me.
The NICU team always made us feel really empowered, they basically held our hand every day. I was lucky enough to be at the girl’s bedside pretty much daily at first then after those first few weeks, if not daily, then every other day or part of the day and then the other part I would spend with the older kids. I would call the NICU when I wasn’t there, but the panic never went away. I will be honest that I was having night terrors. I would wake up in a panic, a few times dripping in sweat, thinking of all the horrors that could go wrong and dreaming that I would wake up and the girls had both died. I felt like I was in such a fog, that I was just waiting. I believe in God. I believe in the plan God had for them was great and I believed and hoped that every day would be great. At the same time, I also believed that every day could be their last, as I knew how fragile they were.
Kambry and Keeley at birth
It was really hard to believe in God and that he had a plan, but to also see how fragile the girls were and knowing that they could die at any minute. No parent should ever have to see or feel that. The girls looked like complete aliens at birth so that was hard to see. When family came to see the girls, the instant shock on their faces were tough to take in. I never questioned whether they would accept the girls the way they looked but my heart ached for our family to see them look this way and so fragile. Now that they are going to be a year old, it’s really unbelievable to look back at how they looked when they were born. You would never believe it looking at them now.
We are looking forward to celebrating their first birthday. The girls have endless possibilities with support. Keeley and Kambry are surviving all the odds that were stacked up against them. They survived brain bleeds and TTTS. They survived pneumonia, sepsis in the NICU, PDA’s & surgery to close the PDA for Keeley. Someday when the girls are older and look back at their journey, I pray they truly know that no matter what someone says to them or how someone treats them or what their social status is, no matter where they live or anything that comes their way – I just hope that they can be really proud of who they are and know what their strength is because they have taught me so much. They have made me a stronger person, they have made me become more independent, they really made me believe in myself again. That may sound silly, but I think that not only did God use me to be their mother, but He also called the girls for a purpose. There’s not a greater feeling than living in your purpose, not only being Keeley and Kambry’s mom, but also Koy and Kollin’s mom. I for so long have struggled with feeling as though I have to live up to expectations of others. I have grown to learn not to worry about what others think and only focus on what’s best for my kids.
There are everyday challenges of extreme micro preemies. Every parent is called by God for a reason and I’ve admired parents of children who are medically fragile/medically needy for years. I could never have imagined what it would be for myself to be a mother of not only one but two medically fragile/medically needy children. It’s not for the weak or maybe it is and God uses them to make them stronger.
Kambry & Keeley
Everything is a challenge, every aspect is a challenge, what you do, who you hang out with, where you go … even doing something like going to the grocery store is just not that easy these days. Thinking about infection control and changing my clothes at the door, washing our hands at the door, these things we really never had to think about before. There are also challenges with health insurance and I feel like for us it’s even more exceptionally difficult as we have two not just one child. When you’re born before what most and even insurance considered “viable” there are a lot of questions with insurance about paying for things.
We have to make really big decisions like not having friends and family come to visit them because they have a runny nose. With anyone else, if you have a runny nose, you can just pop in their house and see them but if you have children who are immunocompromised, you have to think of these things. You really have to be a critical thinker.
I have been a huge advocate for the Preemie world, TTTS community and the PPROM community. Some of the things aren’t so easily described or laid out for you.
We made a decision to homeschool one of our children because the risk was bigger than what we could take on this year. Having Koy in a kindergarten classroom exposed to all those germs then bringing them home to the girls was not an option, this is our life right now, going into our first RSV season this is a critical time to make sure the girls health is protected and stays as stable as possible. Our friends and family in our community have judged us for making decisions like that. For everyone that is reading this, I want you to know that you should never feel like you have to question your role as a parent because someone else questioned you when they have never lived it.
Some of our challenges we face on a daily basis could continue to be part of our lives for the years going forward. We have no idea of what could come our way. The girls are doing well, they are beautiful, they are soft, they are smart, in a perfect world in what most people compare them to – they are doing great.
For the future, it’s kind of funny, when the girls were born people would bring up all the time; “Think about what the girls are going to be like when they go home.” The first few weeks when the girls were born, there was really no thinking past the day or the hour because their life wasn’t guaranteed. Even halfway through their NICU stay we were reminded by our NICU team that it wouldn’t take much to take their amazing story of survival to make a turn for the worse. Every day of progress mattered.
The hope that I want to bring to other people is that 22 week babies can live somewhat normal lives, they can love other people, they can show emotion, they are capable of things. Today Keeley and Kambry are capable of rolling around on the floor! Keeley is attempting to crawl and is trying to eat solids. They play with their siblings and are capable of so much more than what the world gives them credit for. I really hope that the definition of viability can start to change for all hospitals. I’m educated and realistic in knowing that the change takes money, education and the right tools. It takes a whole team to save the 22 weeker, but it also takes the parents to want to take on the responsibility of what comes with a micro preemie. It’s really a lifestyle. Even before the girls were born, one of the many conversations I had with my doctors and the NICU team included the lifestyle you could gain by saving a baby (babies) born so early. Some parents make the choice of not intervening and that’s what the family decides is the best fit for their family. It doesn’t make them a bad person, it’s just the best thing for their family. I knew right when the girls were born and we agreed to intervene that hard, traumatic, stressful, challenging, scary things could come our way and it was something I chose to accept hands down. The minutes leading up to their birth, many emotions and things were filling my head. I fully accepted caring for not one but two babies with significant disabilities. This is the hardest journey that I’ve ever faced, and I don’t know anyone that has this hard of a journey. I know other families with medically needy children, but I’ve never heard of anything like this. I can’t speak for other families with medically needy children, but I have an understanding of what they feel like and I have so much respect for what other families may be going through.
I will never stop raising awareness for viability at 22 weeks because there was a point where I was told by a few different health care professionals from different hospitals that 22 weeks was not viable and that if the girls came at 22 weeks they would die. I remember that pure fear, the shock and the overwhelming sadness that became a part of me the moment my water broke. But also, the strength I had to just “have” in order to not stress my body out. I just want to educate other moms and other families so that they are 100% aware that IT IS possible that at 22 weeks, yes your baby could have significant disabilities or issues and you could choose to intervene and your baby could still die but that you have options.
Keeley and Kambry all smiles
The night that my water broke, I was exactly 22 weeks pregnant and I was hoping to make it to the hospital and stay on bed rest for a number of weeks. I had heard of other pregnant women whose water had broke, went on bed rest and were able to stay pregnant for a number of weeks. I never considered that the girls were going to come that night or the next day, or that they were going to die. After I was admitted into Labor and Delivery, there was a heavy possibility that the girls were going to come and that they would be still born or that they would pass in utero from infection so I somewhat felt that if the girls did come that they would pass. My health care team and I talked of every possible outcome if the girls came that night or the next day. I remember telling my team that we were going to celebrate, we were going to kind of have a party in the room, no matter what we were going to bring the girls into a calm environment. I remember having to specifically make plans for what would happen after. Burial…. early on after being admitted the team also purposefully made sure to ask me what the girls’ names were. I appreciated that more than I could even say. It made them “real” and gave them a name no matter what happened. Each time I was checked on by the University of Iowa staff, the girls were then spoken about as if they were in the room and already making a huge impact. My team also continued to make sure I had support. I was thankful to have my mother and grandmother by my side. To this day they are reminded regularly how thankful I was to have them there holding my hand, encouraging me, looking at me directly in the eye to give me strength. My grandma and my mom both said I kept saying “I can do this.” and “I was scared for them”. The University of Iowa always said to me that they would do whatever was needed, that they would be there by my side whatever decision we made, that they would back me up and always be there. They never backed down from the will, the heart, or the ability to try to save them.
The impact that the NICU made on me as a mom is really hard to describe but I will do my best. Prior to having Keeley and Kambry, I was a huge push over. I felt like I had to be a people pleaser. I felt I had to mother in a specific way to have other people see me as a good mom, I always felt like I had to do what the other moms were doing. I felt like a great mom prior to the NICU. Sometimes now I question myself if I am making the right decisions. The only reason I question myself is because I want to be the best possible parent to all 4 of our children. I’ve had to make sacrifices that I never thought I would never have to make. The decisions I’ve had to make now are required in order to keep the girls healthy. I feel a sense of relief not feeling like anyone is going to tell me what I can or cannot do. People still judge my decisions because they have no idea what I go through as a mother but just because they are curious and I guess for the first time I feel like I am making decisions based on what we want for our kids, not what the popular thing is or the normal thing is but what’s best for our kids. Now that we are kind of isolated, I can make those decisions and not feel bad about them. The NICU has made me become more independent and it’s made me stronger than I ever thought I could be, and though it’s not what I would have ever wanted I am still thankful for the journey as it’s taught me so much.
At the beginning of my pregnancy, I had recently separated from the military. My husband and I were both Hospital Corpsman in the United States Navy. We thought we were knowledgable and prepared. I took Lamaze, breastfeeding classes, and baby boot camp. You see, I am an A-type personality with hardcore planning goals. My pregnancy of our first child was perfectly healthy until my third trimester. My troubles started with Gestational Diabetes. I was then scheduled for a 38-week induction due to babies usually measuring larger with this condition. I was ok with this until one of the worst things possible happened. I was 34 weeks and two days, when my headache wouldn’t go away. I knew headaches were associated with blood pressure so we went to triage. It turned out I was right, and my blood pressure was severe Preeclampsia. Then my room became full of midwives, nurses, and doctors. I knew this was not normal.
HELLP syndrome (hemolysis, elevated liver enzymes, low platelet count) a rare disorder that occurs in less than 20,000 cases a year. My husband and I had never heard of it even with my past work experience in OBGYN and Maternal-Fetal Medicine. After they explained my condition, I then realized I wasn’t going home, and I was having the baby that weekend. Remember, when I said I was a planner? Well, my original birth plan was gone. I thought once we had the induced c section, the scary part was over. The hardest, most painful part was to come.
My son had all the symptoms of early birth. Lack of lung development, feeding challenges, reflux issues, and heart rhythm irregularities. I understand why medical providers don’t usually want to bring these topics up to parents during pregnancy. Why make people worry when there is no need, right? My husband and I are the parents who want to know as much as possible. I wish we had been educated, even if briefly on what could happen and how to adapt. Not having family close made our experience that much more difficult. I still remember laying in the hospital bed after surgery, not being able to hold my son. It was twenty-four long hours before I could go to the NICU to hold my child. My husband often went to see him, and I was left laying there with feelings of jealousy and anger. I just wanted to breastfeed and hold my son.
After almost two weeks of recovery and NICU support, we were able to take my son home. While I know I am fortunate compared to some who have longer NICU journeys; I still have intense negative emotional distress remembering those weeks. To make matters worse, I had constant breastfeeding issues and panic attacks in my sleep for months. I know now, I probably had post-traumatic stress disorder. There is literature about NICU parents, both male, and female, having PTSD (Clottey & Dillard, 2013). Why is PTSD not a standard screening for both parents?
My message to other parents is that you are not alone. You will get through it. It’s okay to feel anger, joy, sadness, love, anxiety, frustration, and loneliness. Just know that you are amazing. You went through something traumatic and beautiful at the same time. My son is one of the best blessings I have ever received, but it was still traumatic. Going home alone without your child may feel like one of the hardest things you ever have to do. However, know that it is best for them.
My message to family is that no matter how much we say we are ok, keep trying to stay connected with us. The best thing you can do is listen and help with little things. If we don’t call or post photos on Facebook, don’t harass us. Maybe taking pictures of our baby with an NG tube hurts us or a NICU day didn’t go well. No matter what, know we appreciate you; it’s just difficult sometimes. For HELLP syndrome, women are high risk for future pregnancies, and recently, researchers discovered the risk of potential cardiovascular disease for the mother (Muijsers, Maas, Heijden, & Frings-Dresen, 2018). The risk taken on, to have more children, is a personal decision between a couple. Please respect peoples’ wishes not to have any more children and don’t push your opinion on them. Unless you went through that experience, you may never truly understand the endless fear that could be caused by dangerous pregnancies.
My message for medical providers is, please educate parents more on preemies. Having that educational opportunity is better not used than not being equipped at all. Please share resources, like the Graham’s Foundation with NICU parents. During a NICU experience, one resource could make all of the difference for support, especially for military families. For military families, please learn about the Fischer house or Ronald McDonald house, and refer us even if we don’t need it. Depending on the military base, we may have to drive hours every day to bring breast milk to our child or children in the NICU. So not being able to do that, can you imagine the parental guilt, because we know breast is best.
On that note, I want to thank Naval Hospital Camp Lejeune. I will always be grateful to the fantastic NICU, Labor/Delivery, Lactation Consultants, and Mother-Infant Care unit staff for keeping Killian and I thriving. Without all of these teams working together, we wouldn’t be here. I also want to thank my family/friends for all of the love and support. It truly makes a difference.
My husband and I met in Bible School in 2013. We soon started dating and got married in January of 2016. February came around and we found out we were pregnant! We were excited and so happy to be soon sharing our lives with a baby. We went for a sonogram and the tech tells us “well I’m glad you both are sitting down, look there, you’re having two of them!” I instantly started crying, I was going to have two babies come October! Our family and friends were all excited with us and we celebrated every chance we could. In June we all came together and found out we were going to have a Girl and a Boy! And then came July…
I started having contractions and went to get checked. My then OB said it was nothing to worry about and it was only ligament stretching. We went home trusting they knew what they were talking about only to be in labor 12 hours later. I gave birth to two amazing beautiful babies via emergency C section on July 20th. They went to the Children’s hospital down the street to stay in the NICU. Both babies were doing so good, our Sofia and Eric were fighters since the beginning.
The doctors and nurses were very impressed on them both and how well they were doing. Exactly two weeks after birth, a Wednesday, we went to the NICU to see them only to come in and see our sweet Eric crying. We didn’t think anything of it so we smiled, recorded and laughed at how cute he sounded. A few minutes later the nurse found out something was not right, and she jumped into action. They checked and examined him and realized he had NEC. Within the next few hours our room was full of nurses and doctors and surgeons and everyone talking to me about what was about to happen.
We went into surgery the next morning. Once they realized it wasn’t getting any better, he went into surgery once again. He had several blood transfusions, he had all kinds of medicine going, and was now on the ventilator. My baby wouldn’t move much anymore, you could see and hear the pain he was in, it was heartbreaking.
Two weeks we spent in prayer and two weeks of doctors trying everything they could to save my babies life until there was no more that could be done. We gathered our family and told them it was time to take our baby off the ventilator. Our Eric passed away Thursday August 18th at 6:36pm. We held him, we sang to him, we worshiped with him and then we let him go.
It’s been 3 years and 2 months since and it feels like yesterday. We have learned to cherish each other and our family. To love one another every day since we do not know when it could be our last. We try and live every day as best as we can so one day we can be reunited with our boy once again. We know we could never get over this, but we can survive this and learn to live our lives in a way to honor our son.
I found out I was pregnant very early along – at just 5 weeks. After another round of infertility treatments – this time to get us baby #2 – we were pretty used to the routine by now, and the early ultrasounds. At 7 weeks, we went back to confirm viability and it was then that the doctor informed us there were two sacs – we were having twins! I was elated, but immediately cautioned by the physician that many times, twins this early on, do not both survive. Despite his warnings, I jumped in, head over heels, for these babies. They were mine and I was theirs. Forever.
At 11 weeks, we had yet another ultrasound. This time, the ultrasound tech searched and searched for both heartbeats. She found one pretty easily, but the other was nowhere to be found. There was no heartbeat. We lost one of the twins. The reality was setting in. Seeing both babies on the screen – one alive, the other, not – was the hardest thing I’ve ever seen. I saw both sacs and both babies and felt like it was my fault that one didn’t make it. I was their mother. What was wrong with me? All the questions flooded my mind in that moment and in the days to follow. Two days later, I went back in for yet another ultrasound, hoping, praying, that the other baby was going to be okay this time. They were not. The baby was still much smaller than their sibling. There was no heartbeat again. Only one baby was going to continue to grow in my belly. It was a truth I had to accept. And I was determined to do everything in my power to ensure that baby survived.
After giving birth to a 27-weeker just 18 months prior to this pregnancy, we knew the risks and what had to be done to minimize them. This meant weekly hormone injections for 20 weeks of my pregnancy. Each week, my daughter and I would trek over to the doctor’s office and I would get my shot. The shots were painful, but the thought of losing this baby, too, was even more painful to bear. Thankfully, the injections worked, and at 39 weeks, my baby boy bust into this world at 8 lb. 10 oz. Today, he is a happy, healthy 18-month-old, loving life and his adventures with his big sister. He knows not of the sibling he’ll never have, and we’ll probably keep it that way – at least for now. It’s not his heartache to bear. Just know that there is hope. My son is my sunrise baby. His sibling that we lost too soon is my sunset baby. Each day, as the sun rises and the sun sets, I take a moment to think of the life we have and the life we lost and remember how truly blessed I am as a mother.
My husband and I have been married for two years, for a year we tried for our baby with no luck and on year one of not trying, God blessed us with a positive pregnancy test. I was 5 weeks along and we were thrilled. I have three children and he has a twenty year old, so this was a big surprise for him to be expecting a new baby!
At 12 weeks we did our routine bloodwork and found out he was a BOY! After many long talks and prayers, we decided he would be Kailor Dean. Kailor means “little warrior.” Little did we know how much this was going to ring true for our sweet baby. At 15 weeks I woke up in the early morning having what I was almost positive was a late miscarriage. Rushing to the emergency room and not knowing if there’s going to be a little heart beating when we saw him was terrifying. But after a major bleed, there he was, being his usual spunky little self. He was always sucking on his thumb, rubbing his face or waving at us. They sent me home and said everything looked good, that sometimes this just happens. Relieved, is the emotion we felt.
After two more weeks and the bleeding continuing with baby boy still healthy and growing as he should I was sent to a Maternal Fetal Medicine specialist a town over. Same diagnosis, this just happens sometimes. We were scheduled to return at 20 weeks to follow up, the bleeding never stopped and honestly, I as well as my doctors were in shock that Kailor was unaffected by this. At 18 weeks, the diagnosis came unexpectedly during a routine ultrasound. A sub chorionic hematoma reared its ugly head. They aren’t even that uncommon actually, but most of them disappear by 20 weeks but unfortunately mine continued to grow instead of disappearing. “It increases your risk of a miscarriage” “You should consider terminating this pregnancy” But I wasn’t giving up on my baby. He deserved a chance, he was surviving against the odds!
At our 20 week appointment with the MFM, he was not pleased with the size of the hematoma and by now my body was wearing down. My hemoglobin was low, and I was just not a picture of health. He immediately sent me for blood transfusions, my hemoglobin was 7.2. A normal range is 10+. He said I would be admitted at 23 weeks to start the steroid shots to prepare Kailor for his early arrival. So here I was scared knowing my son was coming entirely too early and after me fighting for my life, he’d be fighting for his. But we were ready, and I was determined we were going to make it to the 23 week mark! We had made it so far and we weren’t giving up on him. Those next 2-3 weeks were the most frightening of my life. I was in and out of the hospital due to blood loss, 20 weeks passed, 21 weeks passed, 22 weeks passed, we were going to make it! He was going to be the baby who made it against all doctor’s predictions. The night that 22 weeks 4 days rolled around I suddenly got very sick and passed out at the hospital where I had been for 3 days. I got 10 emergency blood transfusions. Yes, I said 10! The magnesium drip was started to try to stop labor, I was in indescribable pain (the worst I had ever been). Pain medications were started but it didn’t do much to alleviate it. I thought I was dying. But I got the first round of good news, my MFM said to transfer me, he was ready for Kailor and I (this was the NICU). I was thrilled, even though I was questioning if we’d make it because I was unstable.
During paperwork and waiting on an ambulance to come get me, they had me upside down in the bed to try to prevent me from having Kailor, he was born at 9:45 am. As rare as it is, he was born fully in his sac, so my sweet boy didn’t even know he had been born. It took seven whole minutes for a pediatrician to make it to him and get him out and it was detrimental to him. His heart was still beating by the grace of god, he was 1 lb 2 oz and 12 inches long, a clone of our youngest son and his daddy but to my surprise the hospital did nothing because he was 3 days too early. Those three days cost my baby his life. We embraced him for 51 minutes until he passed in his mommy’s arms. We are broken and we miss him every single day. I should be in the NICU fighting alongside my son like he fought alongside me when my life was on the line keeping him alive but instead, I’m holding his memory box and visiting his grave.
I fight for awareness to be brought to these micro preemies. They deserve a chance.
As a mother to no living children, some of the absolutely hardest things I have done is to continue breathing after losing Colette. It may seem a tad melodramatic, but it is true because parenting a child that you cannot see is a constant struggle of keeping her memory alive, her presence in our immediate family and in our extended family intact, all while struggling every day with our own personal grief.
My husband and I pretty quickly agreed that Colette would remain an active presence in our lives and our family. We would talk about her regularly, included her in discussions about our family, how we would continue to give back in her name. We talked about how future children would know about their older sister in heaven. For us, Colette was and still is as much as part of our family as if she was living in the next room.
Of course, this did not come with a whole host of problems that we continue to encounter day after day. There are so many issues that come up and that we have to figure out solutions to still remember Colette and include her in our family.
Family photos. While we are thrilled that we have pictures of Colette in the NICU with all of her tubes and wires, taken on cell phones, and then especially thrilled to have the gorgeous photos of Colette taken by Now I Lay Me Down to Sleep after her death, we do not have a family photo. The closest we have currently is a picture of Colette in her incubator with both of our hands touching her. And as we hopefully reach our long-standing goal of bringing a child home, we also struggle with knowing we will never have a complete family photo, that a very important piece will always be missing.
We were lucky enough to have been able to create what we call our “Coco bear,” made from a blanket personalized with Colette’s nickname, that we often use to symbolize Colette in photos. But, of course, having a bear is not a replacement for a child and it is so difficult to remember to include the bear when we have the possibility of family photos. Do we take it with us every time we go anywhere with our family? Do we keep it at home so it is safe from wear and tear? And while parents do not usually forget their children, when our child’s physical presence is a stuffed bear, it is easy to just casually forget.
What to say to future children. Most parents do not even think about having to have the talk with their kids about death. Then, when it comes up is usually in a natural circle of life kind of way, like as a relative or neighbor dies. But, from the very beginning, our future children will have to encounter what death means, and the innocence we all got to have with believing only those people died after living long lives will be shattered. Our children will know right away that life can be cruel, that sometimes babies and children die.
We will also struggle with the balance of still parenting and remembering our oldest child who is not physically here while also simultaneously parenting living children so that they still feel loved and not that they are living in the shadow of their older sister and completely unable to live up to the memory.
How to get other people to remember that we have a child. For most parents, they know that they are regularly going to be asked about their child and will easily be able to bring up their child to others. But, for us, we often have to initiate those discussions and that can be exhausting. There are sometimes whole days (and longer) where we are the only ones who say Colette’s name. People who have not suffered the loss of a child may not realize just how amazing it is to hear her name. Recently, we were at an event and we heard a mom yell Colette at her daughter and it warmed my heart so much that I had to go over to the mom and share our Colette’s story with her.
Birthdays and holidays. We commemorate Colette’s birthday and angelversary without a second thought. But, it is often to get others to remember the dates or even to know what to say to us or how to commemorate the dates. The same thing happens around holidays. Gathering with family at holidays is a huge trigger to realize that we don’t have to deal with high chairs or strollers or car seats or anything because Colette is not there. It is also the time where we want to make sure Colette is included as part of our family, even if not physically present. One thing we have done is that we have a candle we bring to these events, that we take a few moments alone to think of Colette and light it and then include it in the day as a symbol of her presence and position in our family.
Parenting a child who is not physically present is one of the hardest things someone can deal with and one that feels like the world’s worst rollercoaster. We love Colette, she is still our daughter and part of our family, but it is a struggle, one we never intended to have.
–Michelle Valiukenas Tisdahl and her husband, Mark Tisdahl are the founders of the Colette Louise Tisdahl Foundation which they created to to financially assist families in crisis due to pregnancy complications, premature birth/NICU stay, or loss.
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