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Finding Your Strength When the Plan Changes

April 11, 2019 by

By Katelyn Richter

 

Difficult roads lead to beautiful destinations; I can say that now, a year and a half later. Our NICU journey is entirely different from anyone’s I have ever met. My husband and I live in a small town on the western side of North Dakota. Our town has a critical access hospital, that is great, I mean I work in the ER there as a nurse, but one thing it does not have is a NICU. It was a beautiful summer day in August, my husband and I were winding down all the busy summer plans and just enjoying the fact that our daughter would be with us in about six weeks. We planned to finish all of our nursery and household projects before she came, being that we just moved into a new house in May. Summer is a busy season for my husband’s job, and we had four weddings that summer. Like most pregnant ladies in the summer, I was trying to stay cool and enjoy mocktails.

It was Friday night, and I was woken up with vomiting and a headache. I was very familiar with vomiting; it was like my second job from week 5 to week 17 of pregnancy. I just wrote it off and tried to rest. In the morning, it just hadn’t stopped, and I started just to feel worse. I had not had a headache like this before. I went to the hospital to be seen by my OB and get a bag of IV fluids.

When they took my vital signs, my blood pressure was 185/100. They asked me if I had ever had a high reading and I hadn’t. I just had an appointment two weeks before where my blood pressure was 110/65. Like any good nurse, she changed cuffs, machines, arms and my blood pressure was high again. The doctor came in and said that they going to try some high blood pressure meds in the IV and see where it is. My blood pressure didn’t go down, it went up. She then explained to me that my blood pressure was rising and I was too sick to stay at our hospital. This was a line I was very familiar with, I’ve told many patients that before. I couldn’t go to the next bigger hospital with a NICU because I was too sick therefore I was being sent to a hospital 4 hours away. Oh, and I had to be flown there. Another line I was very familiar with telling patients.

There were so many things running through my head when this was happening. I was 33 weeks and 2 days pregnant, I couldn’t have my baby yet, we didn’t even have sheets on the crib. I asked myself if this was my fault. I am a working mom who runs around the busy ER all day, it has to be my fault. I am already messing up as a mom, and I am not even one yet. Then I thought, my husband, he’s got to be thinking somehow it’s his fault. Then I thought, wait, I am the medical person in the family, how am I going to explain this, so everyone understands.  It’s my job to explain the diagnoses and treatment plans. They don’t understand what severe pre-eclampsia means and what it could mean.

 The looks on everyone’s face around me, they were scared. I was usually the one to comfort them in these situations. I thought about my parents that were in CA; my sister had JUST got her clean bill of health after having postpartum cardiomyopathy and how worried they must be. I didn’t realize how sick I was until everyone who knew what was going because they learned it in school (my co-workers that came to visit), looked at me like they were saying goodbye.

The doctors and nurses were able to get my blood pressure down in the bigger hospital. The day they were considering discharge, the headache came back. It felt like someone was banging my brain on my skull. I told the nurse about my headache, and my blood pressure was elevated again. My OB, the neonatologist, neonatology nurse practitioner, and nurses came in to explain to my husband and me that we were going to have the baby before something worse happened to me. They explained how she could have to be intubated, IVs, and how the NICU would work.

Early the next morning, our sweet 4 lb baby Avery arrived. I don’t remember the delivery. At one point, I know my blood pressure dropped as well as Avery’s heart rate. I remember the one nurse said, you’re going to c-section, or you’re going to need to push in the next few minutes. I knew I was only at a seven a few hours ago, so the whole pushing thing probably wasn’t going to happen. Avery’s little head was crowning, and there she was. She knew she needed to come out to save her momma’s life. The next hours were rough for me. I was on bed rest due to the magnesium drip and everyone got to see my baby but me.

 

My husband, her grandparents, aunts, and uncles, got to go introduce themselves to her. The only person she really hadn’t met was her mom. With lots of convincing and negotiating, the doctor and nurse finally allowed me to be wheeled in to meet her officially. I could only touch her tiny little body with my hand but it was the greatest moment ever. It was a short visit, but I got to meet my daughter.    

Avery did great, no intubation, just oxygen, bili lights, and feeding tube. She was also closely watched because she had magnesium in her system. The doctors and nurses kept telling us how Mag babies are supposed to be extra sleepy, but our daughter is feisty. Days in the NICU weren’t always easy. It was four days until we were able to hold her and only one parent per day. Like many NICU babies, Avery had her ups and downs, not gaining weight, not passing her car seat test, and having spells of hypoxia and bradycardia. It is not always an easy journey when you take three steps forward one day and two steps back the next.

 You do not know how much you love your pillow until you do not have it for 35 days. Avery was in the NICU for 30 days and we were there a few days before we had her. Lucky for us we were able to stay with my husband’s best friend, once I was discharged from the hospital. My husband and I did not go home at all. His work made it work, and I was on maternity leave. We bought a lot of new clothes, tried a lot of restaurants, and found a few new TV shows. Our days were scheduled around the times they rotated Avery, and rounds which then graduated to feedings. We tried to breastfeed when we could, but eventually, a bottle and formula was introduced for weight gain. Which yes, meant I exclusively pumped, but that’s another whole story.    

The hardest part of being a NICU mom is leaving your baby at the hospital every night. Thank the lord for the great NICU nurses, or I don’t think I would have ever left. A lot of new moms do not get sleep because they are up with their baby. NICU moms don’t sleep because they are up waiting for the phone to ring that something happened and they need to come to the hospital or having to pump to get their milk supply. Being 4 hours away from home wasn’t ever easy. However, it did always feel like we were visiting, so I always told myself, this is temporary. Having a NICU baby gives you the strength that you did not know you had. Lean on those around you, sit with your baby, read them a book, be around them as much as you can, there’s no one stopping you. On the tough days, I would go on Pinterest and read myself inspirational quotes and look at other NICU babies and their stories or look up #NICU on Instagram. That is how I found Graham’s Foundation and had their support. It helped me to see real people and babies that were able to get through this tough time. Find strength in other’s experiences. And just know that one day your 4 lb preemie is going to be an 18-month-old toddler yelling at you for their bottle and trying to jump off the couch.

Categories: Preemie Parent Voices
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Overcoming the Odds

April 4, 2019 by

By Tammy George

Hannah was a high risk pregnancy due to my extensive scar tissue and history of preterm labor. However, much to our surprise, my pregnancy was going great with no issues at our many check ups. But at almost 28 weeks, my water broke in the evening, as I was sitting on the couch. Having never experienced my waters rupturing spontaneously with my sons, I assumed I was peeing myself and went to bed. After waking a couple of hours later to the side of my bed being soaked, my husband called the hospital and they demanded I get there quickly. While I was still in disbelief and confusion, the hospital staff determined indeed my water had broken and gave the first lung steroid shot. The goal was to keep her inside of me for many more weeks. On the third day, the contractions began and it was feared that me/Hannah was developing an infection. Hannah was born on July 30th, 2010 via c-section weighing 2 pounds 15 ounces & 16.25 inches long.

One of my favorite parts of her story is that the doctor who saved me 30+ years ago, 29 weeks and 1 and a half pound, was the same doctor who saved Hannah— Dr Alan Lantzy. God works in mysterious and wondrous ways. Hannah was a feisty fighter from day 1. She was known for notoriously yanking her leads and iv’s out daily. She survived 3 holes in her heart, brain bleeds, blood transfusions, many bradycardia episodes, many apnea’s, NEC scares, failure to thrive, and more. Amazingly, she came home at 36 weeks weighing just 4 pounds.

Today, she is a petite 8 year old who passionately loves cats and gymnastics. She’s a super strong competitive gymnast who loves her team and coaches. She thrives at school and loves her friends and teacher. She is fierce for her brothers and they love her so much. She is our warrior princess. The NICU has changed me forever. 8 years later, memories and flashbacks will still creep up. I will never cease to be amazed that the teeny tiny baby girl thru the glass has overcome all she has, to be the wondrous, spirited strong girl she is today. It’s amazing how us moms just adapt to the NICU life and how quickly that becomes ‘normal.’ The days I prayed for her to just breathe, have turned into days where I watch her soar at all she loves. I’m so grateful that she and I survived and that our family is together. I’ll always remember those moms whose babies never got to go home—whose arms are empty remembering their angels.

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Categories: Preemie Parent Voices
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Your Best Will Always Be the Best for Them

March 22, 2019 by

Written by Katie Hannigan

You hear a lot about breastfeeding, but not often abut how hard it is. We are led to believe that it is easy because it is the natural way. It shouldn’t require any effort. But the test results have determined that is a lie.  This is even more true when it comes to preemies and babies in the NICU.

I’ll be honest, when I found out I was having twins I got super excited about the idea of tandem feeding and breastfeeding in general.  I can’t tell you why, as it was never a priority with my oldest and I only nursed my middle for 6 weeks. Maybe I was hoping for some sort of come back. Who doesn’t love a good comeback, right?

When the twins decided they wanted to join the world 15 weeks early, my idea of nursing them instantly changed.  Out went the images of bonding and nursing them right after birth and in came my new partner, the breast pump. Over the next few months I would spend more time with her than my own husband.  

Our relationship started shortly after the twins were born, before I even got to fully see them.  They needed the colostrum. I needed to get that for them. From that point on we had a standing date every 2 hours around the clock.  At first, it was easy. It wasn’t comfortable but it was easy. My babies needed me to do it and it was the only thing left I could do for them.

 Once I was discharged, it became a little more challenging. We lived 35 minutes from our NICU and, as I mentioned, I had two older kids at home; one in preschool and one in first grade.  I made the drive to the NICU everyday after school drop off and back home every afternoon before the bell rang.  I tried to time everything so it would work out just right. Since they were not yet getting feeds, we were able to freeze everything I was getting and, even then, it wasn’t much.

After about a week or two, the joy was wearing off. My supply was not increasing like I wanted it to. My alarm clock was waking me up every few hours at night, not my newborns cry. But I kept telling myself they needed it. It was the best. I carried on.

I never had a very strong supply.  I did everything they said to do in the beginning, but it never came on strong.  I knew women who could pump gallons at a time it seemed and I was lucky if I got an ounce or two.  I tried almost every trick out there. Everything from power pumping to blue sports drinks and anything else Pinterest suggested. I also tried herbals like fenugreek, which no one tells you has the opposite effect on some women, and it made me smell like maple syrup.  The only thing that seemed to maybe help a little was skin to skin but that wasn’t possible every time. It’s one of those built-in struggles of the NICU, having to wait for someone else to come help you hold your baby.

Once they got old enough, we started to let them go to breast.  My son was a champ. He loved food and enjoyed anyway he needed to get it.  But he had a lot of trouble still remembering to suck, swallow and breathe. He would often drop his heart rate, which was terrifying, and we decided at that point that he wasn’t quite ready. My daughter, on the other hand, never really figured out the latch.  She was still pretty small and had a hard time. It was frustrating for both me and her. I decided I was just going to exclusively pump.

After a few more weeks, we brought my daughter home and life became even more chaotic.  Now I had the older two in school, one baby with a lot of appointments and one baby still in the NICU.  I started to push the old breast pump to the side which impacted my already slim supply.

My son was discharged a week later and we were finally complete. I thought I would be able to fix my supply. Maybe even try putting them to breast again, now that we were home and everyone was comfortable, but it didn’t happen that way.  I was not making enough for one baby all day, let alone two. The less milk I made, the more stressed I became, which just resulted in even less milk.

When the babies were 6 weeks adjusted, I gave my pump the good old “its not you, its me” and we called it quits.  My frozen supply was long gone and, just like that, it was over. I’m sure some would say that I could have tried harder.  I, of course, let myself down. This was going to be my comeback. But did I let my kids down? I don’t think so.  It has taken me two years to get to that conclusion. I put blood, maybe some sweat, and a whole lot of tears into those 4.5 months and that is something to be proud of.  I gave my babies what I thought was best and, in the end, it was a happy mama. I think something to remember is that your best is always going to be the best for them.

Categories: Breastfeeding & Pumping, Bringing Preemie Home, Life After NICU, Parenting Preemies, Preemie Parent Voices
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A Preemie’s Perspective

March 19, 2019 by

Written by Emily Howard

Hi, my name is Emily Howard and no, I’m not a parent. I’m the preemie. I am now twenty-two years old and here to give all preemie parents support and hope from a different perspective. 

I was born on August 15th at 32 weeks, weighing 4 pounds and 15 ounces. Now remember technology was much less advanced twenty-two years ago. I was immediately admitted to the NICU. While there were many uncertainties, my parents called in their church’s priest who came to baptize me within hours. They frantically looked through a phone book to find a name for me. I am forever Father Bob’s “August 15th Miracle Baby” and I hold that relationship very close to my heart. I had many ups and downs while in the NICU. From a nasal CPAP, being on oxygen, getting E. Coli, invasive candidiasis (yeast of the blood), necrotizing enterocolitis, a cardiac murmur, a feeding intolerance and anemia, it was a rough roller coaster for my family. Due to my level of sickness, I was put in a room with only two other babies that was darker and less noisy. One of the hardest parts for my family was not being allowed to hold me due to being in an incubator. After all of the antibiotics, spinal taps, blood transfusions, and much more, I was discharged eight weeks later. 

Looking at myself and my accomplishments today, you would have no clue I went through all of this. I’m told preemie parents worry how it will affect their child for the rest of their life. Although I know every story and situation is different, I am here to tell you to not worry. 

Have we questioned whether some injuries, anxiousness, or such are related to my premature birth? Absolutely. However, I have not let it hold me back in life. My whole childhood I was very athletic and advanced in academics. Starting in middle school I was selected for advanced classes. I was on the honor roll all four years of high school and graduated with twenty-nine college credits. I was on the varsity dance team, which earned me the role of captain, four state titles and multiple top ten national placements. I was directly admitted to the University of Iowa’s Tippie College of Business and graduated with a bachelor’s degree in Finance in just three and a half years. I was involved in student organizations and even held an executive board position for one year. Now, I have a great fulltime job at the headquarters office of a financial institution. 

 

Categories: Life After NICU
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Simple Questions

March 11, 2019 by

Written by Nicole Lauer, one of our Preemie Parent Mentors

When are you going to start having kids?

How many kids do you have?

Is this your first pregnancy?

You’re married now, when do the babies come?

When are you going to try again?

Those questions seem harmless, right? But what if I told you…

The woman you just asked when are you going to have kids? has had three miscarriages.

The married couple you won’t leave alone about having kids, has been trying to get pregnant for two years.

The pregnant woman you asked is this your first pregnancy? lost a baby one year ago and isn’t sure how to answer your question without making things uncomfortable for you.

The family member you keep hounding to pop some kids out already, you’ve been married long enough, just went to the doctor with his wife. They were both told they couldn’t have children and they are devastated.

The young couple at church just lost their only child, and you just asked them how many kids they have. Think of how painful that was for them to answer your question.

To be honest, it’s not your business to know when people decide to have children. It’s not your business to know if it’s someone’s first pregnancy. Why does it matter to you what number pregnancy they are on? It’s not your place to bug married couples on when you think they need to start having children. It’s not your place to ask people when they plan to try again. I know it’s harsh to say… but it’s none of your business—even if it’s a family member or your closest friend.

Unless you know for a fact that a couple has never lost a child, don’t ask them how many kids they have. Answering this question after the loss of a child causes heartbreak and confusion for those grieving parents.

Unless you know for a fact that the pregnant woman you bumped into has never experienced a loss, don’t ask her if this is her first pregnancy. Instead, just wish her well without asking her anything.

Unless you know that the person you are talking to has never had a miscarriage, isn’t struggling with fertility, or has never been told that they couldn’t have children, don’t ask them why they don’t have any kids yet.

Stop assuming that just because a couple gets married, that they need to immediately start having children. I promise that you will be perfectly fine without knowing that personal information.

Please, for the sake of all of the hurting men and women out there, stop asking these questions and stop making assumptions. If you are trying to get to know someone or make conversation, ask them something else. Anything else. You don’t know what a person has been through. You don’t know what a person is currently going through. To whoever is reading this, if you are guilty of asking questions like this, please think of the heartache you could be causing. We know you mean well, but what you’re asking can be causing an immense amount of pain for someone.

With Love,

A Momma to a baby boy in Heaven—tired of being asked these questions over and over again.

Categories: Preemie Loss & Remembrance, Preemie Parent Voices
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Meet Our Team: Michaela

January 29, 2019 by

I am very excited to be partnering with Graham’s Foundation. My son Carter was born at 10 weeks premature, at 30 weeks and 1 day. He was 3 pounds 11 ounces and was 16 ¼ inches long. I was terrified about whether he would be okay and what implications this would have for the rest of his life. While in labor, the nurses kept telling me things like “You won’t be able to hold him because he likely won’t be able to breathe on his own” or “You likely won’t be able to see him for a bit while the NICU team assesses his health.” That was far and away the scariest day of my life. 

Our friends and family were so incredibly supportive and did everything they could to comfort us while we waited to see how Carter was doing, but we knew no one who had been through this. I felt very scared and very alone. We were very, very fortunate that Carter was able to breathe on his own when he was born, and I was able to hold him before he was taken to the NICU. We spent 6 weeks in the NICU at Aultman Hospital, where we were, again, very fortunate that Carter just needed to get bigger and stronger until he was ready to go home. We were also fortunate to be surrounded by the doctors and nurses who helped guide us through our son’s care and taught us so much while we were there.  

A few days after we were admitted to the NICU and once I knew that Carter was okay for the moment, I sort of shut down. I went to the NICU every day to be with him, but I didn’t really talk with anyone or let anyone else come for about a week.  ]I needed to process how differently things could have been. There were babies I walked by every day born weeks earlier than Carter who were not able to breathe on their own, who had difficult and life-changing diagnoses, and some who were never able to go home. Even now, when I think about how I felt in those moments, I cry.

During that time, I wish I would have been able to talk with other parents who had been where we were. I wish I would have known about Graham’s Foundation. I’m so thrilled to be working with a not-for-profit whose vision is a world where no parent goes through the experience of prematurity alone. We provide a number of resources to preemie parents, including valuable information, care packages, and a parent-to-parent mentor program. I am excited about working with Graham’s Foundation and will do everything I can to help ensure that no other parent has to go through the experience of prematurity alone.

Michaela Calhoun has recently joined the Graham’s Foundation team and will be working with our NICU outreach and ‘Tinis for Preemie events! We are so excited to welcome her!

Categories: Advocating for Preemies, Bringing Preemie Home, Life After NICU, Mothers of Preemies, Parenting Preemies, Preemie Parent Voices, Supporting Preemie Parents
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Meeting Baby Kade: A story of love and loss (Part 2)

January 20, 2019 by

This is the second of a two part series from Nicole, one of our newest preemie loss mentors. It is a raw and personal look at premature delivery and loss. Sensitive content is included. If you missed the first part of her story, find it here.

The next afternoon, we were released from the hospital. A woman came to my room to take me to our car in a wheelchair. That’s exactly when my world came crashing down. I remember being wheeled down to the parking lot and I was numb. I just gave birth, but I was leaving the hospital with empty arms. I couldn’t wrap my mind around that. I was helped up into my husband’s truck and as he pulled away from the hospital, I don’t think I have ever cried so hard in my life. I cried like that for the entire 25-minute drive home. Nothing could console me.

When we got home, it didn’t get any better. We had some visitors for a bit, but once they left, my husband and I just sat there in silence. We didn’t know what to do. We didn’t know what to say. Everywhere we went in our house, we would run into something baby related- whether it be all of Kade’s never worn clothes, shoes, pregnancy books, the car seat, everything. 

The next few weeks were a blur. I fully admit that I hit rock bottom. How do you not though, when you have to plan your newborn’s funeral and the only way you can see your child is if you go to the cemetery? I remember being so angry at the family and friends who didn’t come to his funeral. I remember finding a bag of stuff in my closet not knowing what was in it—when I looked it was a bag full of Kade’s clothes- that bag got thrown so hard at the wall.

I remember having to go to the doctor to see if I still had the infection—I was the only woman in the waiting room who wasn’t pregnant or holding a baby. I remember sitting in church, hearing a baby crying and it took everything in me not to storm out. I remember friends and family texting me “how are you” and I was annoyed by that because I wasn’t okay and wanted them to just leave me alone. I’m lucky because I married the most supportive person on the planet and he loved me through the darkest time in my life. He got me through these times when I got so angry I could barely think. I was hard to love, I forgot how to manage a friendship, and I put on a fake smile everywhere we went. But, he loved me anyway.

I remember the day I decided I wanted to get out of the house for the first time- so I went to Target to buy some new bedding for our master bedroom. Everything was going fine…. Until I walked into the store. I was surrounded by pregnant bellies and moms with their brand new babies. I practically ran to the back of the store to the bedding and just tried to finish my shopping trip. As I made my way back to the front of the store, I kept running into pregnant women and babies. I dropped all of my things and walked out of the store, sat in my car, and I cried. There is nothing more painful than seeing other moms with their new babies and seeing pregnant bellies right after you lose a baby.

Months went by and I have learned that the pain of losing a baby will never go away. Instead, I have just learned how to live with it. I have learned what my heart can handle being around. I have learned how to avoid situations I know aren’t good for me to be in. I have learned how to respond to questions that make me want to scream (such as, so do you have any kids?). I have learned how to navigate through all of my worries during this new pregnancy we have been blessed with.

I have learned a lot. Some days are better than others. I still have moments that seem to knock the wind out of me. I still have days where I feel guilty for preparing our nursery for a new baby. I still have days where I sit at his grave, cry, and apologize over and over again for my body failing him. But, I just continue to remind myself how incredibly lucky we all were to have had our baby boy for those 99 minutes.

To this day, I remember exactly how he looked, how he felt when I kissed his forehead, and how his little hand was so small that it wrapped around just one of my fingers. Our baby boy knew nothing but love during his short time here on earth. I will forever live my life in his honor- making sure no one forgets that he existed and that his tiny life mattered.

My mission is to help other moms and dads who have experienced this type of loss. When you lose a child, you join this “club” of other parents who know and understand your pain. It’s hard for others who haven’t lost a child to comprehend a tragic event like this. They try to help as much as they can, but they don’t know what to say. They don’t really know how to make things better no matter how hard they try. They think after a few months, life moves on (even though a parent to a child in Heaven knows that it doesn’t). Because of that, a lot of times this leaves the grieving parents feeling alone. I want to support grieving parents and help them navigate through this horrible event in their life.

If you have ever lost a child in pregnancy or in infancy, you are not alone. You are loved. You are supported. You have an army of other grieving parents praying for you. If you don’t know anyone personally that has been through this, I will be that person for you.

 

Categories: Mothers of Preemies, Preemie Loss & Remembrance, Preemie Parent Voices, Pregnancy
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Meeting Baby Kade: A story of love and loss (Part 1)

January 18, 2019 by

This is the first of a two part series from Nicole, one of our newest preemie loss mentors. It is an extremely raw and personal look at premature delivery and loss. Sensitive content is included.

January 4th, 2018 was the day we found out we were expecting our first baby. April 17th, 2018 was the day that changed our lives forever.

When I was around 17 weeks pregnant, I started experiencing some lower abdominal pains and discomfort. During one of my regular OB checkups, I explained my symptoms to my doctor, who said it sounded like I had a UTI. For the next couple of weeks, I was taking medication to treat this, however things never got better. The pains I was having kept getting worse and I just flat out didn’t feel well. One day, while at work, I started to leak some fluid and I called my doctor. I was told to go to labor and delivery immediately to get checked out. After several hours of being at the hospital, I was released and was told that everything was fine and that it was just a bad UTI.

A couple of days went by and I ended up in the ER to receive a dose of medication from an IV to help the symptoms I was having. When we left the ER, we had plans to go to Lowe’s to get all of the things we needed to finish our baby’s room. We never got to make that special trip to Lowe’s…

While sitting in the ER and looking at the doctor’s face, I immediately knew something was wrong. I was admitted into the hospital and was told I would be staying at least a week for them to keep an eye on me. While we were waiting to be moved into my hospital room, my normal OB came to visit me and check things out herself. “This isn’t good. It’s too soon” are the words that will haunt me forever. She explained to my husband and me that I was already dilated 1cm and that my cervix was almost non-existent. I also had an infection somewhere in my body that they couldn’t find. My white cell count kept climbing and climbing and no one could figure out why. I had a team of doctors and nurses who immediately started doing
everything they could to prevent me from going into labor and trying to figure out where the infection was. They ruled out a UTI like they previously had thought, but where was this “mysterious” infection? To this day, we still don’t know.

I spent one night in the hospital and things were okay. I remember the relief I felt when I woke up the next morning and hadn’t gone into labor. We spent the day hanging out at the hospital, visiting family members who came to see us. I’d have some pretty mild contractions, but they were few and far between so I thought everything was okay. It wasn’t until my husband and I decided that we needed to get some rest and go to bed that I knew something was horribly wrong. We got all cozy (or should I say, I got cozy in my hospital bed while my poor husband was stuck on the uncomfortable couch they provided), and that’s when everything quickly changed.

The contractions got bad. They were happening often and they were intense. I remember trying to keep my sobbing quiet to my husband could sleep, but he bounced up from the couch as soon as he heard my tears and called the nurse in for me. It was in that moment that I panicked. I was dilated 6 cm and all of a sudden the look on all the doctors and nurses faces were terrifying me. They turned on all of the lights, sat me up, started hooking me up to what felt like a million different IVs, they brought in a table of medical tools for delivery, and my room when from being just the two of us, to a team of worried looking people in an instant.

I was in labor and there was nothing they could do to stop it. The doctor that was there that night, sat next to me on my bed, with tears in her eyes, and she prayed with us. All of the doctors and nurses that cared for us that night had tears in their eyes during the entire process.

Since I had an infection that no one could find, I couldn’t get an epidural. I have never been in so much pain in my life. After several hours of this, our little boy, Kade was born. He was 9.5 oz and 9.5 inches long. He was so tiny, but he was absolutely perfect in every way. I remember the doctor telling us that once he was born, he would pass away within one or two minutes. However, our sweet boy was so healthy that he survived for 99 minutes. During those 99 minutes, we loved on him, gave him kisses on his tiny forehead, held his hand, and tried to let those precious moments soak in because we knew they wouldn’t last much longer. Kade got to meet all of his grandparents, his uncle, and he was baptized as well before he passed away.

I remember the moment I watched his tiny heart stop beating. It didn’t truly sink in for me until I handed him over to my nurse and she took him out of the room for what would’ve been the last time we would ever see him. I spent the next several hours listening to other babies being born in the rooms around us. It was torture. Why my baby? Why us? Why?

Categories: Mothers of Preemies, Preemie Loss & Remembrance, Preemie Parent Voices, Pregnancy, Supporting Preemie Parents
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Cognitive Differences as a Preemie – Looking Back

January 17, 2019 by

I was one of those children who was anxious about everything from age 4 on. In third grade, I had a math teacher who would hold my work up (with mistakes) as an example of what not to do. So, I decided not to go back to school for quite a while. I eventually returned, but I pretty much flunked third grade!

Math anxiety like I have seems to be very prevalent in adult preemies – at least the ones I have met through blogs. As soon as I hear the word quiz or exam, I still get anxious. Today, the solution would have been to put me in a math class that taught math in a different way. However, that didn’t exist back then.

Like many other preemies, I am a creative thinker and do better at visual based learning tasks. I prefer a visual description of objects to a list of words. It’s funny but maps don’t work well for me. I get overwhelmed and have no idea if I am facing North, West, etc. It’s even funnier because my husband of 40 years is an M.D./Ph.D who thrives on lists of words, facts, exams, etc. – So it could have been a coping mechanism to marry someone who excelled at what I did not. It’s worked out because I provide the empathy and heart. A Win! Win!

For parents of preemies with similar school challenges, I would recommend talking to the teacher or principal with your child. Most schools want your child to succeed. Changing teachers may be an option. I also had some tutoring later in life, when I was an adult and went back to school. Tutoring is another great option because the tutor can slow down and spend more time on teaching the concepts behind the problems. However, it’s the exam that I don’t do well on.

I am going to be honest and say that I still try not to get into situations that make me a little panicky. At age 65, a test or competition against others is stressful. For example, we have friends who like to play card games. I always decline to play unless I have a partner. I find it too stressful and anxiety provoking because I fear that I won’t do well and I don’t find it fun. So, I have decided that there is no shame in saying, “I’d rather watch”. It’s really not MY problem to explain why. Some may see this as giving up, but I consciously decided that it’s not my “job” do what everyone else wants if it makes me unhappy.

I believe most preemies excel at being a survivor, creative thinking, focusing on a task, and relentlessness. These are such important traits to have to get anyone through the road blocks in life that do appear. A preemie’s ability to persevere, when others can’t, is a true gift! However, I think children are happier when they can focus on their strengths and not weaknesses. 

I hope some of these suggestions are useful. Feel free to email if I can answer any questions.

Laurel – Preemie from 1953 2lbs. 4oz – 3 months in an incubator

Laurellipsick524@gmail.com

 

Categories: Developmental Issues, Life After NICU
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Sharing Hope: Shann’s Story

January 14, 2019 by

I remember the neonatologist coming into my room, but the rest is a little fuzzy. He gave percentages, talked about feeding tubes, and the NICU. He was very matter of fact and even somber with his tone. He emphasized that the longer I could keep my babies inside, the better the chances they had on the outside. I didn’t understand much of what he said, but I did understand that last part.

At this point, I had been in the hospital for almost a week. My Maternal Fetal Medicine doctor had admitted me as soon as I hit 24 weeks. My entire pregnancy had been complicated, so it wasn’t too surprising that this is where I ended up. Even though it wasn’t a shock, hospital life was hard for me. I had a two-year-old toddler that I missed fiercely. I had a husband that was single-handedly moving us into a new house that I had only seen once. It was lonely, stressful, and scary being monitored all the time, yet no one knowing what was going to happen to my babies. There wasn’t a single doctor that could guarantee me that I would go home with two healthy boys.

My journey started at 8 weeks when I found out I was pregnant with identical twins. I was lucky that I had an OB who recognized the twins were sharing a placenta, and she sent me to a specialist at 12 weeks. From there, everything turned upside down. What the doctor thought might be a genetic defect (it wasn’t) at first, we then went to a diagnosis of either Twin to Twin Transfusion Syndrome (TTTS) or Selective Intrauterine Growth Restriction (SIUGR). Basically, the twins were not sharing the placenta evenly, so one twin was not getting enough nutrients.

I was monitored by ultrasound at least once a week, but the twins never showed a severe enough case of TTTS to consider surgery. My only options were to wait and watch and hope. Hope was a hard thing to hold on to during a time of such uncertainty. My blood pressure would shoot up at the beginning of each appointment, and I would cry all the time. I felt solely responsible for those two babies growing inside me, and it was a huge weight I put upon my shoulders.

Luckily, I did find some hope in the form of two women. Through my own research, I found the Twin to Twin Transfusion Syndrome Foundation. The founder, Mary, made herself available to me any time I need to talk, cry, or share things about my pregnancy. We had decided not to tell many people that I was pregnant, since it was such a stressful situation. She also connected me to women who had been in a similar situation the year before. I’m not sure how I would have survived without those two amazing people in my life. Their voices and stories helped me through those days in the  hospital, which each seemed like an eternity.

Unfortunately, those long days didn’t last as long as we all hoped. I was only able to keep those babies inside for a few more days after that neonatologist talked to me and my husband. On the morning of May 4, 2012, I heard a very slow beating on the monitor next to me. When I
buzzed the nurse, I was surrounded by a swarm of people. Asking me if I wanted to do everything to save my boys, the doctor on-call whisked me into emergency surgery.

There was no time to call anyone. I remember crying, and praying that both my boys would be alive when I woke up, which is the first thing I asked when I woke up from the anesthesia. They were. Baby A was 2 lbs. 2 oz and Baby B was 1 lb. 7.5 oz born at 25 weeks, 5 days. I was so relieved and happy that they had made it. We had made it. I had no idea the journey we would go on for the next three months and beyond, but for the moment, I finally celebrated both of my boys.

Their NICU journey was not an easy one, but we made it through brain bleeds, surgeries, ventilators, feeding tubes, blood transfusions, and more. It was at this time, I started writing. I needed an outlet for all my emotions. I again felt alone, and that no one could really understand what our family was going through. The NICU is a lonely, scary, stressful place. Yet, it is also a place where miracles happen and every step, no matter how small, is celebrated.

So, I started writing, and I haven’t stopped. My boys are now 6-years-old, but I still remember all the emotions from each step of our journey. I don’t think I will ever forget, and I don’t want to. I want to use my writing and experience to reach other families who need support and hope throughout their own NICU journey.

Hope is something everyone needs.

Shann is a writer, dancer, teacher, and most importantly, mom to three amazing boys. After a full-term pregnancy and birth with her first son, Shann gave birth to identical twins at 25 weeks, 5 days. Her pregnancy and their NICU stay sparked her love of writing and advocating on behalf of premature babies. She raises money for various organizations, and spreads awareness about the NICU journey. You can read more from Shann on her blog, Shann Eva’s Blog at https://www.shanneva.com

Categories: Expecting a Preemie, Life in the NICU, Preemie Multiples, Pregnancy, Supporting Preemie Parents
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