HELLP Us with a Preemie: A Military Family’s Journey

by Kristen Barton

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. 

Baby Eric

by Sarai Coronado

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. 

A Moment with Kailor

by Jessica Spradlin

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.

Balance of Parenting Non-Living Children

by Michelle Valiukenas

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. 

Life After Discharge

by Ali Dunn

From the moment my twins were born at 28 weeks and admitted to the NICU, my first thought in the morning and my last thought at night was when will they come home. I just wanted it all to be over. After struggling for 3.5 years with infertility, I was tired of waiting to be a mother. I just wanted my babies out of the NICU and home with me.  Time is such a blessing and a curse in the NICU. Babies need time to grow and develop, to learn all the things they need to survive. But it’s also so difficult to go to the hospital day after day, and not know when your baby is going to be released. Time is rarely linear in the NICU, as just when you think the end is near, an issue arises that puts you right back where you started. I viewed discharge day as the end of this whole experience, but really it was only the beginning.

After 55 days in the NICU, one of my twins was ready to be released. I wasn’t prepared, in fact it felt somewhat sudden. I had been waiting to finally get to this point, where all the milestones had been reached, all the tests had been passed. But it was bittersweet to leave one baby behind. Although it doesn’t make much logical sense, I always felt a little better leaving, knowing my babies were not alone in the NICU. They had each other. Now, however, I couldn’t find solace in this. 

The next ten days were the hardest part of the whole NICU experience. I literally felt torn in two pieces. At nearly 2 months in, I had an excellent NICU routine in place. It was something familiar and well-practised. But this was different. I didn’t want to leave one baby to go back to the hospital, but I couldn’t stay away from the baby still fighting in the NICU. Finding a balance was impossible, which led me to feel so guilty. But finally the day came, when everyone was home.

When I had imagined this moment over 2 months ago when my babies were first admitted to the NICU, I thought I would be so ready to take them home. But in actuality, it was a very scary experience. The NICU that treated my twins was a traditional open bay design. We didn’t have a single-family room, and I had never spent the night with my babies. I wasn’t used to caring for or even holding my babies without a variety of machines to monitor their vitals. I was sent home with two medically fragile babies, and very little training or instruction on what to do next. To say I wasn’t prepared was an understatement.

Now that I am several years out from the NICU experience, time has changed me. I no longer think about discharge day from the NICU as the end. I know now that life after the NICU is just the beginning of so many brilliant and hard things. And that the grit and tenacity that we created in the NICU is the foundation for the journey we have all only just begun.

Let Yourself Grieve

by Maegan Sheiman

NICU parents are no strangers to grief.  In an instant, we are forced to take in the feeling of loss in so many forms it seems impossible to balance.  As we watch our little ones’ struggle, we grieve their pain.  We grieve missing that magical birthing experience.  The moment when the doctor hands you your baby, everything is perfect, and you cry happy tears as love overflows in the room. We grieve the journey home with healthy baby in our arms.  We grieve missing milestones like babies first bath.  We grieve our life before the NICU.  We grieve the daily struggle of 1 step forward and 2 steps back and the possibility of our stay being prolonged.  The list of grief can go on forever.  What’s even more difficult to grasp is the guilt that may come along with it.  This guilt is a dangerous path.  It makes you feel wrong to watch your little one fight for their lives while we mourn what could have been or what once was.  

I am here to tell you it’s ok to let yourself grieve.  In fact, it’s normal, it’s healthy and it’s necessary to let yourself go through this process.  Maybe it seems cliché to walk yourself through the 5 stages of grief but with every hit you take while in the NICU going through this process and letting yourself go through this process is what will bring you to acceptance of your circumstance and the things that cannot be changed.

Denial will come as no surprise. You will face challenging decisions, harsh results, unwanted procedures and illness, permanent device implants and so much more.  There is so much truth to the rollercoaster analogy and we want to believe the tests are wrong or there are other options.

Anger is always the next natural instinct and often times the medical staff may bear the brunt of this.  Luckily this isn’t their first rodeo.  They do understand we need someone to blame and they are the easiest targets.  Just remember they are there for you and your baby.

Bargaining steps right in when we start researching other options, something else must be out there and maybe there is.  It’s always worth asking and gaining as much knowledge as possible but also remember trust your medical staff to give you the information that best suits your babies case.

Depression gets us that much closer to acceptance and it really almost goes hand in hand.  You can be depressed because you have come to the realization that this circumstance is what it is.  This is where guilt may set in as well.  While important and a natural reaction/phase of the process it’s just as important to carry yourself through this and into acceptance. Don’t let yourself get caught in depression for an extended period of time.  Sadness plus guilt can be hard to overcome and is a delicate balance to maintain when you are vulnerable.  Just remember, if you do find yourself stuck and having difficulty coming out of this phase to ask for help.

Acceptance allows you embrace the full process of what you are experiencing.  While it may seem as faint as can be it will help you see there is a light at the end of the tunnel.  Maybe it’s not as bright as you hoped, maybe it’s not the same color, maybe it’s not even a light and it’s something completely different! Either way it’s there and it’s a new path.  It may be the unexpected path or the unwanted path but accepting it will help you appreciate every small victory gained.

Now you can embrace how far your baby has come as a gift and going through this will only strengthen you for what may still lie ahead.  Your will find you get to create your own milestones for your little one and because they have to fight so much harder to reach them, celebrating them is even more exciting.  This is just one of the many examples of why you must let yourself grieve.  Grief is what gets you to the other side, the greener pasture, the next phase.  You will face it so much more than you ever thought you would in a lifetime while in the NICU, but you and your baby will come out so much stronger and more resilient on the other side.  You will learn so much about how strong you really are as a person and a parent. Most of all, you will find a strength you never knew you had and all because you let yourself grieve.

You Got This.

Friends, Stop Apologizing

by Kristina Mulligan

Whenever I am discussing my son’s need for Early Intervention Services or any of his diagnoses with a peer, usually the first words out of their mouth is “I’m sorry.” And you know something? I’m likely guilty of this, too. It’s an instinct and sometimes the words just come out before you can even stop them – like word-vomit. I know that the intentions are usually good.

You’re sorry that everything is so difficult.
You’re sorry that there is little time to enjoy the sweet moments of childhood.
You’re sorry that so much of our time is obligatorily spent at some type of appointment.
You’re sorry that this life that we never asked for is the one that we have.

But I’m not sorry.

Of course, whenever I pictured my future child’s life, I saw all of the positives: the effortless running and jumping, endless talking, refrigerators covered with artwork, trips to museums and concerts, complete with laughter and joy. Our life may look a little bit (or a lot) different than I had once dreamed, but I am so much more appreciative of the little things. There may not be long runs and high jumps, but boy, do those tiny steps he takes bring tears to my eyes. Our conversations may not be much to an outsider, but my heart understands every word he says. The coloring on our walls may not be beautiful to you, but I appreciate the effort that went into each stroke. Outings and scheduled activities may not appear on our agenda often, but that means that we cherish our time together even more. I have plenty of laughter. I have joy. We live our own happiness in our own way.

As a special needs parent, I don’t expect, want, or need pity. Compassion, maybe, but never for someone to feel sorry for our circumstances. Instead of apologies, try offering a listening ear, a helping hand, or possibly even caffeine. I would love company to an important doctor’s appointment or therapy session. My love language these days is research, so it speaks volumes when someone is informed on a condition, treatment, or diagnosis that our family is working through. The words, “How do you spell that so that I can Google it later?” touch my soul in the deepest way.

You don’t ever have to apologize. We are so grateful every day, believe me.

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