One in ten

Prior to giving birth to my preemie, I honestly did not know much about prematurity or personally know of many people that have had preemies. I knew my husband was a preemie, but we never really talked much about it at that point other than the fact that they had to cut diapers to be small enough to fit him and he had to get doll clothes in the beginning because newborn clothes were too big. I was reading “What to Expect” while pregnant, but it really only touched on a healthy, full-term pregnancy. My OB also gave no indication that this could be a possibility for me, always saying things look great, but had I known, I would have tried to do some research ahead of time to try to prepare myself. The thought that I would be the one in a one in ten statistic never crossed my mind.

While pregnant, a friend of mine went into labor at 24 weeks and I watched her baby’s NICU journey on social media. I was in awe of this tiny human and what she endured. She called her the “tiny warrior” and that is exactly what she was. First she fought to breathe and then to grow and I watched her be victorious with both. I was nervous when I hit 24 weeks because of this, but then my pregnancy continued so maybe I was part of the nine of ten and wouldn’t have to worry about this happening.

Then everything changed.

My third trimester started and I was still good with no indication of going early, but 4 days after that, Poppy came. I was now the one in the one in ten. When you are the one, without much prior knowledge of prematurity, you are blindsided, you are scared, and you feel alone because you don’t have that many people you can turn to for advice in this situation because they have never experienced prematurity. I was lucky in that aspect because I had a friend whose NICU journey ended the day mine had started so I was able to talk to her right away so I could start to learn what to expect. Even though you are riding on the biggest emotional rollercoaster of a lifetime, you have to be strong, you have to be positive, and you have to be the biggest cheerleader for your tiny warrior. You educate yourself on a topic that was foreign to you before you delivered and now, after the NICU journey, you feel like somewhat of an expert. Conversations now include medical terminology that you might not have otherwise used in life if it wasn’t for your preemie and reaching milestones means more to you than you could have ever imagined. The information I learned about prematurity and how common it is I have also used to inform others so they can be aware too. While all of this is happening, you will learn that you are not the only “one” out there. Last year while fundraising for our March of Dimes team, I found out I knew a lot more of the ones. Friends from high school would make a donation because they had a NICU baby too or knew someone that did. This year has been no different for us. Since returning to work this school year, there has been an outpouring of love and support from the community. They have come up to me at events to let me know that they had a preemie too. Their support has been so much appreciated! I have also met people out and about running errands or trying to get raffle donations for an event that had a preemie or know someone that did. I have had more friends have preemies in the past year too, so I became a person they could talk to if needed. Because of all this, my community of ones is constantly growing. I would not change the fact that my daughter was a preemie. She amazes me each and every day. She is my hero; my miracle. She has made me proud to be part of the one.

Those I met in the NICU became my second family, a family that my husband and I have this urge to give back to now. What you do when you are the one can make the difference to someone else that is currently going through it. We have registered Poppy’s Posse again this year in the March of Dimes Walk and are hosting fundraising events to help raise money to fund research to help premature babies have a fighting chance. We go back and speak to current NICU families at Hillcrest and help answer their questions so they don’t feel alone in their journey. I was also lucky enough to work for a school district that allowed me to lead a service project to benefit the area NICUs. Every little bit helps when you are in the NICU.

They say, “one is the loneliest number”, but that does not have to be the case at all when you are the one in ten and when we are talking about prematurity and the NICU family.

A letter to my 26-weeker...

My Premium Promise,

I never imagined that I’d be part of such an elite group of women. But thanks to you, Isaac, I am! I am a preemie mom. I am a warrior mom. I am raising one of God’s most precious miracles. At 26 weeks, I gave birth to the most beautiful baby boy! A tiny 1lb 13oz. Wow! It’s been 14 months since the day my life changed forever, since the day I heard your tiny whimper over all the voices in the operating room, since the day I found strength that I never knew I had. I chose the name Isaac because of the story of Abraham and Sarah. You were my promised son. You were my ISAAC! After experiencing the loss of two children, I didn’t think that I’d ever get to be a mom. God had other plans, plans far greater than I ever could’ve imagined. God gave me YOU! God wanted me to know from day 1, you were a warrior! Your middle name, Alexander, means “defender of man”. That’s no coincidence! You came into this world making a statement and I pray that you always live that way! You are a FIGHTER! You were chosen by God to do the IMPOSSIBLE! I mean after all, He chose you to be born with something that only affects 1 in 12,000 babies! Can you say SPECIAL?! You have shown mommy what it means to be brave. Because of you, I will never give up on anything. Because of you, I will continue to share a story of God’s faithfulness and unmerited favor. Because of you, I get to look a miracle in the eyes every single day and remember that God cannot fail. No matter what life throws your way, you will not know defeat. You will only know a lesson learned.  You will change lives my sweet boy! And guess what?! Mommy and Daddy will be cheering you on the entire time! 

Love always, 

Mommy

….written beautifully by Carrita Flie

Just like that, I have a one-year-old...

Just like that, I have a one-year-old...

I honestly feel this has been the fastest year of my life, but why should it have

gone slow? My pregnancy was fast forwarded to the end three months early, so why

should the rest of the first year of my daughter’s life have been any different? Some

say the first birthday party is meant for the parents because they have kept their

child alive for their first year of life, but if you have a preemie, that statement

couldn’t be further from the truth.

Side by side

Side by side

These memories spark a proud mama bear in me; proud of her for how far she’s come, proud of our family for what we have gotten through, together.  Some people might be scared to have a random picture pop up of their baby when she was only 1 lb 5 oz, three chest tubes, much smaller than my husband’s hands that are cupped around her. For us, and even for Holly, who is 2 and a half- we only see our child.  

A letter to mom in room 18...

A letter to mom in room 18...

Yes- mama. You’re a mother now. In the disorienting cloud of dust left behind by the explosion that just went off around you, it was impossible to congratulate yourself. You are “mom”. Despite the nature of this place- a place where there is no privacy, a place where you must have permission and assistance to hold your baby, a place where mothering is hard- know that he is yours. You know best, even when you feel you know nothing. No one can do it better than you.

2018, The Year that Forever Changed My Life...

5, 4, 3, 2, 1 Happy New Year!!! You toast your friends and family, you hug, you kiss, you call, you text all at midnight of a new year. 2018 was no different from any other year other than my toast was with sparkling grape juice because I was pregnant. 2018 was a promise of a new adventure since my husband and I were becoming parents in April, but little did we know that adventure was going to start much sooner than expected.

This year started like any other. I had to go through the pain of refocusing my students after their Holiday Break so we could finish the semester on a high note. This is no simple feat with snow days extending the break and dealing with students that have senioritis, but I made it through. The plans for baby showers were being put into motion, we registered for our hospital tour and Lamaze classes, filled out the preregistration paperwork for the hospital, and we even went on a long weekend trip to Florida towards the end of January. We were in month one of the New Year and things were trucking along just fine.

January 30th started my 3rd trimester. Things were becoming real. We ordered the baby’s furniture the day before and we were starting to really plan out her room. We had her name picked out and we were driving our families crazy because we wouldn’t tell anyone the name. For my husband and I though, using her name in conversation made us realize she was coming and that she would add so much to our family.

By the end of the week, I really didn’t feel well. I thought it was just gas and constipation because those are issues you could have during pregnancy and seemed normal for where I was in the What to Expect book based on how far along I was. Nothing seemed out of the ordinary until Friday when I wasn’t feeling good at work, couldn’t keep anything down once I got home because I had left early, and then had spotting that night. When we made it to triage of labor and delivery I told them my symptoms, we had a treatment plan, but all of that changed when someone decided to check me. I went from being able to leave the hospital to you are 3-4cm dilated and we are taking you to the delivery room in case the medication can’t stop labor. My husband and I were in a state of shock and panic all at the same time. I remember saying “this can’t be happening, I don’t have a sub yet at work.”

Labor was quick and Poppy Rae came into our lives at 1:55am on February 3rd 11weeks and 3days early. That is 11weeks and 3days that we thought we still had to get ready, to have the showers and figure out what we still need to be able to bring her home. You are supposed to have time to make a delivery plan, but my plan was made for me. I thought I would be the first to hold my baby after she was delivered, to have that skin to skin contact right away, but instead the holding went to the amazing NICU team that saved her in that moment. Instead of bonding, I was left in the delivery room alone while everyone went with Poppy to the NICU to find out that it was my body’s fault that she came early. In a sense I felt that I had failed in that moment. My placenta grew on one of the uterine fibroids I had, the fibroid grew and ruptured my placenta. I knew the fibroids were there, the ultrasounds showed us, but the only thing that was said to me while I was pregnant was that because of the fibroids I might have a c-section or that she might come a couple of weeks early. Nothing prepared me for this. It is crazy how quickly your life can change.

51 days in the NICU. 51 days of feeling isolated from a world that keeps moving. 51 days of watching the most amazing miracle unfold right in front of my eyes. Poppy is a fighter. Poppy wanted to survive. In my 51 days I met my new village. Doctors, nurses, therapists, other staff members, and the families of NICU babies. They were and still are the support I needed to get me through our time in the NICU and when we got home. They are the only ones that truly understood what I was going through and still are even though every NICU journey is different. Saying the NICU changes you is an understatement. You become stronger, the love you give and feel will overwhelm you when it comes to your baby, you become medically versed, you witness a miracle, you might pray more than you have ever prayed before, you might become more compassionate, more level headed by not sweating the small stuff anymore, you become thankful and grateful for this gift, your priorities shift. You become a parent to what you think is the most amazing baby you have ever laid eyes on. You become a parent.

Becoming a parent is literally one of the best things that have ever happened to me. Poppy amazes me each and every day. She started out too small, but how she has grown, changed, hit her milestones for her corrected age and well surpassed any and all expectations for her birth age has just been the neatest thing to watch. Poppy acts like the 10 and a half month old that she is rather than the 7 month old she should be. Poppy has filled a part of me that I didn’t realize was missing and she brings so much love and joy to everyone she has come in contact with.

I have realized this experience will not deter me from wanting to have another baby. I had to have surgery in May to have my fibroids removed if I wanted to make that dream a reality. It was the most painful surgery I have ever been through and it killed me that there was a period of time that I could not take care of Poppy how I wanted to because of the limitations that were put on me, but it was necessary if I wanted to have another baby. Yes I am nervous that if I become pregnant again I could have another preemie. I know that having a preemie is not a bad thing. I know my village will be there, I know that baby would receive the best care in the world, I know this baby will be loved, but it still makes me nervous. We are trying though.

My NICU journey and motherhood in general have made me a better person. I am not saying I was a bad person before, but now I have the itch to always give back to my new village because they gave so much to me. We have visited the NICU several times and brought snacks for the staff. I have gotten this amazing opportunity to blog for Project Preemie that has been not only therapeutic in my journey with a preemie, but if I can help one person with my words and experience, I feel that is a success. My husband and I have gone back to speak with the current families at Hillcrest during their support group and I hope I get the opportunity to do that again. We put a team together for the March of Dimes walk and for the 2018 walk, we raised over $7,000 and we hope to beat that in 2019. I am fortunate enough that the school system where I work is allowing me to lead a district-wide service project to benefit the Cleveland Clinic NICUs because they see how passionate I am about it and because it is a beyond worthy cause. I hope to continue to do good things for the NICU community.

No, 2018 didn’t go as planned and I am sure past NICU parents no matter what year your child was born can understand where I am coming from and think that is the year that forever changed them. However, I wouldn’t change it for the world. I became a mommy to a happy and healthy little girl. I have become wiser with experience. I appreciate so much more in life. Poppy coming early is not a bad thing, instead it gave us more time to enjoy her in 2018 than what we were supposed to have. 2018 is the year that changed me, and it changed me for the better.


Life after the NICU...

Life after the NICU...

Recently, my husband and I went to the NICU family support group to tell them our story and to show them how well Poppy is doing. During our NICU stay, those were our favorite meetings. Seeing a NICU graduate thriving post-NICU gave us hope and assured us that there is a light at the end of the tunnel. After we told them Poppy’s story, the first questions the parents asked had to do with our NICU stay and how we made it through.



NICU Insensitivity

NICU Insensitivity

Now you have a baby that was born too soon. No one can understand what you are going through other than other NICU parents. This is not for the weak. You become more medically versed than you ever expected in your life and you literally watch the tiniest human you have ever seen fight for their life. You assume your family and friends will understand what you are going through automatically and that they will know the type of support that you need, but that really is not the case. Instead things can be said or done that hurt you because they do not realize what things you might be sensitive to now that you are a NICU mommy or daddy. I call this the NICU Insensitivity.

Rock Your Scar

122 days later we walked out of the NICU doors for the last time—this time with our precious miracle in our arms.  It was a hard fought battle, won.  There were plenty of emotional scars, and some physical.  But, we were so full of gratitude and so grateful for each and every one of them—each a step in helping our 26w4d premature little boy get better, get stronger, and make strides towards that coveted place—HOME.  One scar in particular, the “Big Kahuna”, was the result of the amazing medical team literally saving his life after he developed NEC. (Necrotizing Enterocolitis—a complication where a portion of the bowel dies and can perforate, resulting in the body becoming septic.)  We were there long enough to know and to see first hand that a lot of others are not so lucky when it comes to NEC, so we’d take this scar ten times over.  With a little luck and a lot of medical miracles along the way, we came out on top.

Fast forward three years, Henry is happy, healthy and rocking pre-school.  One day, his teacher told me about a small part of his day at pick up.  She told me that they were reading Madeline, and got to the part where Madeline shows the scar on her tummy to her friends. She said Henry stood up on his chair and pulled his shirt over his head, and very proudly showed his scar to his own friends.  They all came up and were touching it, in awe.  


We want Henry to be proud of his scar, and to know he earned it by being brave and strong, and have often thought about how to explain it to him in a cool way that will help him embrace it whenever he might ask about it.  It had never come up, so I didn’t even know he’d noticed it or knew what it was—or that it was different.  I had plans of telling him he’s a brave knight that won a battle with a fiery dragon, or some other grandiose explanation to help him stand a little taller should anyone notice it or ask him about it.  

I guess he didn’t need us to be the ones to tell him it is something to be proud of for a battle fought and won...he somehow already knew.  No grand fabrications needed.

Memories of our journey will fade and soften as time passes, and so will his scar.  But it will always be there, and will always be a part of him.  We certainly don’t view his scar as a blemish, or of something broken or once broken—and I already know he doesn’t, either.     

Scars tell a tale, a story...often of brave heroes.  Henry is our hero, and he has quite a story to tell.

Always rock your scar and stand tall and proud, little one!


- Preemie Mama Elizabeth

Our Twin Journey

Guest Post by Ali Dunn

"Even though my identical twins were born 12 weeks early, I was waiting for them. I had been waiting for them for years.

After years of unexplained infertility, countless interventions, and a failed round of IVF, I was pregnant. Not only was I expecting one baby, but it was twins. I was overjoyed and terrified. A twin pregnancy is high risk, so in addition to a regular obstetrician, I also was under the care of a Perinatologist. At a routine appointment, signs of preterm labor were noticed. Confident that the root of my contractions was dehydration, I was sent across the street to the hospital for an IV and monitoring. Several hours later, I settled into my hospital room for indefinite bed rest. I was woefully unprepared, with neither a magazine to read or even a pair of socks. Over the next seven days of hospital bed rest, we did everything possible to stop the babies from coming, while also preparing for the very real possibility that it might not work. On the eighth day, I had finally convinced the doctors that I would continue strict bed rest for the remainder of my pregnancy, at home. One final fetal monitoring stood between me and my own bed. And then, one twin’s heart rate dropped. It continued to do so over the next six hours. I wasn’t going home, and in fact, an emergency c-section was necessary. Several doctors crowded into my hospital room and tried to explain the risks and potential outcomes of delivering at 28 weeks.

Our next stop was the NICU. Our passage through the NICU was not without moments of bliss and despair. I developed an all day, everyday NICU routine that would become my normal. Pump, rush to hospital, wash hands, kangaroo, pump, check temperatures, stare at monitors, read, ask questions, pump, worry, ask more questions, try not to Google 28 week old preemie, worry, pump, change diapers, call friends and tell them I was pregnant with twins that were already born 12 weeks early, pump. We dealt with many of the common health problems associated with prematurity; jaundice, apnea, PDA, and infections. But after about 2 months, both babies were finally ready to come home.

As my twins grew, they would look at pictures from the NICU and ask questions. I explained what a NICU was and why they were there. I wanted a developmentally appropriate book to supplement our conversations. I couldn’t find a book about preemies that I loved, so I decided to write I Was a Preemie Just Like You. It is a children’s book that celebrates what preemies went through and reminds them that they are not alone.

Several years have passed since my walk as a preemie parent began. It has been a road paved with disappointment, fear, adversity, and complete joy. Having preemie twins changed me forever, and for the better."