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A  Birth Story: From Darkness to Light, Fear to Joy, and Everything in Between Part 3

June 7, 2023 by

By Rachel Kaufman

The unknown is very hard, especially when it’s not knowing if your baby will survive. Sometimes I would receive a call from the NICU while we were at home, and my phone would just show that “unknown” was calling instead of the NICU or something less threatening. I would be scared and amused at the same time. I always thought that was the most ironic thing—my son’s future was unknown, and here was the unknown calling me. I even tried to program my phone once so that when someone called from the NICU, it would be labeled correctly, but it wouldn’t change! Humor has always helped me get through tough situations, so when something funny (or ironic) came up like that, I tried to soak it in and lighten up a little. But it was hard to find the humor during those times. 

As an energy healer and dancer who eats healthy foods, tries to make this planet better, and make people happy (including myself), I had great plans for my birth! I dragged my husband to hypnobirthing classes (a natural birth sounded amazing in my head even though my family was very skeptical), found a doctor willing to not stick me with an IV immediately and allow me to have a natural birth, and, of course, listened to my intuition (and read some books obviously). As someone with a Master’s in Public Health who had worked in neonatal and maternal health for years, I also knew the risks of pregnancy but felt knowledgeable and confident enough to plan and ask for what I wanted. Still, as they say, even the best-laid plans can go wrong. 

When I tell friends and family this story, they usually comment on how grounded and determined I seemed during this time. It was all a blur at the time, but telling this story is helping me to process what it all meant. During this experience, I tapped into an even deeper reservoir of resilience, inner strength, and tenacity. At some point afterward, and perhaps even during, I realized what a BADASS I was (as is every woman that gives birth)! As the chaos of my son’s birth swirled around me, I tried to stay as calm as possible, using the breathing techniques I’d learned in hypnobirthing class with the help of my freaked-out husband, who gently stroked my arm as the doctor cut me open and pulled out my tiny, bruised, breeched, and tooshie-up baby. Several of the nurses mentioned I seemed calm during it all, which was my goal, so I suppose I achieved some sort of “relaxation” during the birth, but mostly that’s just laughable (and not in a funny way).

So, what did I learn from this whole experience and what can you, dear readers, take away from my story? Here are some ideas and suggestions, but I’m sure you’ve received what you need to already.

  • Trust your INTUTION! We are all naturally intuitive – trust your gut and that small voice in your heart/head that is guiding you.
  • If HUMOR is one of your superpowers, use it to help you cope and heal. Even if it’s not your forte, humor and laughter is powerful medicine. 
  • TRUST yourself and trust that the universe is on your side and will support you if you ask for help!
  • SURRENDER whatever you are holding on to and/or trying to control (easier said than done I know!).
  • Lean on your SUPPORT SYSTEM (friends, family, neighbors, angels/guides) during times of need.
  • Daily SELF-CARE is crucial and can be simple (e.g., taking a walk, breathing, making a gratitude list, etc.). 
  • The experiences you have had in your life are GIFTS and often provide lessons. What are they trying to teach you?

As an integrated life coach, energy healer, teacher, and storyteller (among other things), I am realizing how this traumatic experience (plus many other good and bad ones in my life) shaped me into who I am today. I am proud to offer clients my unique blend of skills and experience that can help them heal and connect more with their authentic self and the knowledge they have within. Once we, as humans, learn that we can (again and again) tap into a primordial well of resilience, strength, and other good stuff, it helps us feel more empowered, and perhaps a little bit proud and in awe of what we can accomplish. This can lead to more self-love, trust, and joy in our daily lives, which I believe we all need. I’m the first to admit that I’m a work in progress, but I hope that my story can inspire other people to be tenacious, audacious, get grounded and centered, and live with more gratitude in the face of adversity.

As a certified Reflexologist, Reiki Master, Life Coach, and former international public health professional, Rachel has supported hundreds of people over the past 15+ years to find more balance, grounding, and calm in their daily lives. As a Life Coach, Rachel often works with parents who struggle to find the right equilibrium in their lives around relationships and health. Many of her clients feel overwhelmed and anxious, operating in fight or flight mode, which can take its toll. As a mother of a preemie herself, she knows how important, yet how hard it can be to stay true to oneself and also be a supportive partner and mother. 

Rachel founded Integrated Healing Vibes to fulfil her goal of working full-time as a healer, life coach, teacher and mentor. Her unique blend of skills and experience allows her to access many tools from her “toolbox”. Her unique program offers energy healing and life coaching techniques to help parents feel more grounded, calm, empowered, uplifted and at ease in their daily lives.

www.integratedhealingvibes.com Rachel’s email to contact her: [email protected]

This is Part 3 in Rachel’s 3 Part Guest Blog Series. The entire series is also featured as a chapter in the book, Her Badass Story 2: Stories of Courageous Women Who Unapologetically Became the Badasses in Their Own Lives. This highly rated book is a poignant collection of trauma to triumphant stories of awesome women who have transformed into their ultimate selves. Click HERE to purchase!

Categories: Life After NICU, Mothers of Preemies, Preemie Parent Voices
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A Birth Story: From Darkness to Light, Fear to Joy, and Everything in Between: Part 2

June 2, 2023 by

By Rachel Kaufman

The birth of a baby is supposed to be a joyous occasion, but in my situation (and for my husband and close family), it was not. Instead, it was a mixed bag of fear, grief, stress, hope, gratitude, and many other emotions. I missed out on the “joy of birth” (you know, the kind you read about and see in movies) and will forever grieve the loss of that, even though the outcome was positive. Today my son likes to ask me fun questions like, “Was I cute when I was born?” (Answer: not really.) “Did you enjoy giving birth?” (Answer: yes and no.) And “When did you first hold me and why?” (Answer: 6 days after you were born as you were too small before that and I was recovering from a C-section). Plus many other birth-related questions. I suppose he’s curious as it is quite a story (and it’s his story too after all). It’s the kind of story that, while he was in the NICU, I could only wait and hope that one day I would be talking about it looking in the rear-view mirror, happy with how it all turned out. Because while I was in it, it was pretty terrifying. 

I’m extremely grateful that my son is now 11 years old and perfectly imperfect! I suppose that’s why I’m now ready to share it with a wider audience, in the hopes that my story of joy and pain and the unexpected resilience and strength (and yes, badassery!) I found within myself will help and inspire other parents that may have (or will) go through something similar. 

So, after a bit of fanfare, here is my birth story. My son was born on a lovely morning in March at 29 weeks and 2 days of gestation—or as we say now, “about 11 weeks early.” When we arrived at the hospital, the doctor quickly realized that the baby was in distress (heartbeat was going up and down quickly) and had to be delivered ASAP. We were in shock and I remember trying to stop it from happening, but obviously, the train had left the station. 

I remember it only in a blur—all of the sudden I had an IV inserted, an oxygen mask placed over my mouth, and I saw my shell-shocked husband sitting in a corner of the room, freaking out and neglected by the nurses as they prepped me for an emergency C-section. To add to the chaos, as they finally wheeled me down the hallway to the OR (it seemed like it took forever for an operating room to become available), for some reason, a very loud alarm, complete with red flashing lights, went off. I remember thinking to myself something like, “Seriously?! Okay, stay calm, this is obviously so ridiculous.” As they prepped me (yuck, epidural) and my body went numb from the diaphragm down (it was hard to breathe!), my husband recalled a hypnobirthing method to calm me down and began stroking my left arm. I remember wondering who the hell was stroking my arm for a second because I didn’t notice him come in and he was wearing a mask and hair net! A tiny surreal moment folded into a much larger surreal moment.  

Eli arrived and was a tiny thing, weighing 2 pounds, 1 ounce, and measuring 14 inches long. When they presented him to me and my husband after the emergency C-section, he was badly bruised from living in low levels of amniotic fluid for several days and being “shrink-wrapped” (as I call it). But his eyes were black and inquisitive. He looked around as if thinking, “Hmm, what is this strange land?” He had a little layer of fur all over his body (called lanugo) and looked a little bit like a baby chimp. His hair was plastered to his head like an old man who had applied too much hair gel. 

He was cute and not cute at the same time; we were in love and freaked out at the same time. Amazingly to us, when he was born, his eyes, fingernails, and other body parts were not yet fully formed. We were able to watch him finish forming outside the womb (in his isolette in the NICU), which was a combination of frightening and fascinating at the same time. 

He was immediately transferred to a different hospital that could handle preemies younger than 32 weeks, and I remained in the hospital for another two days to recover from the C-section. After his birth, some of the nurses helping me were literally crying tears of joy (or was it relief?!), telling me that if I had not come into the hospital when I did, he would not have survived. They told me that recently a mother had waited too long and her baby had not made it. It made me appreciate the trust and knowledge I had in my body and my intuition even more. I had saved my child’s life. Saying that sentence, even 11 years later, feels scary, surreal, and amazing all at the same time. 

When you go through a traumatic event like this, your world shrinks. During my son’s time in the NICU, my main support system was small and included my husband, my parents (but mostly my mom!), a handful of friends, and, of course, the NICU nurses and doctors. I’m always surprised when I hear other preemie parents saying they enjoyed their NICU stay as I would never wish it on my worst enemy! For me, NICU life was lonely, stressful, and isolating for the most part. Many people in my life tried to understand what we were going through, but they really couldn’t. For example, maybe a month after I gave birth, some of my friends organized a baby shower for me. While I totally appreciated the effort and enjoyed seeing everyone and feeling supported, it felt a bit like the twilight zone—I wasn’t pregnant, nor did I have a cute baby in my arms to ooh and aww over, only some photos to show. Later, after we brought Eli home, he was still very small (less than 5 pounds) and at risk for infection, so per the doctor’s orders, we could not show him off to the world. This meant that most friends and family didn’t get to meet him for many months when he finally grew bigger and stronger, and it added to my feelings of isolation. 

Overall, his 58 days in the NICU and the ensuing 3-4 months were a roller coaster of emotions. The joys and celebrations of having a baby (my first!) were mostly off-limits for me, and each moment was filled with positive and negative feelings all rolled into one—I suppose the word “bittersweet” fits here.

Every day was focused on my baby’s survival and not much else. To be honest, I have no idea how I spent my time when I wasn’t with Eli during the 58 days he was in the NICU. I spent most of my time either holding his tiny body (which was attached to a million wires) on my chest kangaroo style (skin-to‑skin), which was pure heaven for me, pumping milk in a separate room away from prying eyes (other parents were in the NICU, including dads), or talking to nurses and doctors. 

Eventually, I began to pump so much milk that it was enough for a full-term baby, but as mine was only drinking the amount contained in a medicine dropper, I had to start freezing the excess milk for future feedings. Again, the ups and downs of emotions—on the one hand, I was happy and proud that I could provide my baby with the breast milk he needed to thrive, but on the other hand, I felt sad that I was producing so much milk and he couldn’t drink it all. Plus, I had to deal with the aggravation of where to store the excess milk. By the end of my stay at the NICU, I was storing my frozen breast milk in three or four refrigerators (thank you kind citizens for lending me freezer space)! Once Eli was home, growing faster, and he had eaten his way through the milk in my freezer and my mom’s freezer, I had to call up a kind friend and say something like, “Hey, I’m ready for that frozen milk in your freezer; can I stop by tomorrow?” So weird and surreal. 

While Eli was in the NICU, I was busy yet waiting, confident yet scared all at the same time. When I wasn’t doing the above-mentioned activities, I was cleaning plastic breast pump pieces, asking nurses to find me granny underwear that would hit me above my scar, and, of course, eating and trying to take care of myself a little bit. My mom was with me a lot, which was wonderful.

We developed a routine of going to one of Georgetown University’s (where the NICU is located) on-campus restaurants, where I would treat myself to a ginger drink I liked as well as the occasional sushi. Going to the restaurant was also an opportunity to get away from the NICU stress, breathe in some fresh air, and admire the flowers that kept growing and soaking in the sun no matter what was going on upstairs with the preemies. It was also a good reminder that someday my baby would also be outside, able to run around, breath in fresh air, and smell the flowers. Luckily that promise was kept, although my son is not the kind to stop and smell the flowers too much these days! 

When I was at home, I was worried about how my son was doing without his parents. My main comfort was that there were many awesome nurses and doctors taking care of him around the clock, but not being in control of my baby’s health and not being able to hold him, feed him, and change his diapers was very hard (although I have to say that part was nice—no poopy diaper changes for 2 months!). I had to live with the hope that he would pull through and thrive, but as someone who is often impatient and doesn’t like to lose control, this was hard for me. 

As a certified Reflexologist, Reiki Master, Life Coach, and former international public health professional, Rachel has supported hundreds of people over the past 15+ years to find more balance, grounding, and calm in their daily lives. As a Life Coach, Rachel often works with parents who struggle to find the right equilibrium in their lives around relationships and health. Many of her clients feel overwhelmed and anxious, operating in fight or flight mode, which can take its toll. As a mother of a preemie herself, she knows how important, yet how hard it can be to stay true to oneself and also be a supportive partner and mother. 

Rachel founded Integrated Healing Vibes to fulfil her goal of working full-time as a healer, life coach, teacher and mentor. Her unique blend of skills and experience allows her to access many tools from her “toolbox”. Her unique program offers energy healing and life coaching techniques to help parents feel more grounded, calm, empowered, uplifted and at ease in their daily lives.

www.integratedhealingvibes.com Rachel’s email to contact her: [email protected]

This is Part 2 in a 3 Part Series and was featured in the book, Her Badass Story 2: Stories of Courageous Women Who Unapologetically Became the Badasses in Their Own Lives. To purchase this engrossing and powerful book, click here!

Categories: Life After NICU, Mothers of Preemies, Parent Wellness, Preemie Parent Voices
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Birth Story: From Darkness to Light, Fear to Joy, and Everything in Between: Part 1

May 26, 2023 by

by Rachel Kaufman

It was early on a Friday morning and the baby wasn’t kicking like he usually did when I was resting. Normally, the calmer I was, the more kicks he got in (feisty little guy). The kicks were usually to the groin area since he was in breech position (a very weird feeling!). I was starting week 29 of my pregnancy and had read about some tricks you could try if you don’t feel your baby kicking in the 3rd trimester and want to stimulate them. So, I got out of bed and tried the cat and cow yoga move. Nope. Hmm, I thought. I drank a bit of orange juice to see if the sugar would stimulate some movement. Still nothing—silence from within.

Growing up as a dancer, I have always been what is called embodied—aware of my body and its movements, inside and out. In addition, I trust my intuition and have been working to strengthen it over the years. So, in this situation, I immediately felt that something was off and decided to call my OB/GYN to see what he thought. I had just switched to him two weeks before since he was supposedly okay with my preference to have a natural birth, which my previous doctor had not been keen on. Going to her office felt as personal as being on a conveyer belt in a factory. I didn’t want an epidural or any other invasive techniques to bring my kiddo into the world, no thank you!

The doctor answered his emergency number and I told him that my baby wasn’t kicking. He asked me how many weeks pregnant I was, and I responded, “29 weeks, 2 days.” There was a pause, and then he replied something along the lines of, “I think it would be good to go to the hospital so I can do a checkup and see how baby is doing. I’ll meet you there.”

I quickly went back to our bedroom and woke up my groggy and confused husband (it was 7:45 a.m. and we are not morning people), telling him why we needed to go to the hospital. We didn’t feel a huge sense of urgency, but made our way there quickly nonetheless, hoping to clear up whatever issue it was and carry on doing whatever we needed to do. I remember how beautiful the weather was that Friday, with blue skies and daffodils in full bloom—an unusually beautiful day in Washington D.C. for mid-March. As I entered the doors of the hospital, little did I know that it would be several days before I’d breathe fresh air again, and many months until I would be able to enjoy nature, or really anything at all. 

We all have so many layers that make up who we are, some visible (physical) and most invisible to the passerby (mental, emotional, spiritual, etc.). I’m figuring out as I write this chapter what some of the traits, skills, support systems, and other more intangible things were that helped guide me through the trauma of giving birth and caring for a premature baby. Although, I realize now that it’s not just about what traits (acquired via nature or nurture) we possess, but also about how we CHOOSE to react to a given situation, no matter what life has given us. As a newly minted life coach, I am learning about the many ingredients that go into the mixture we call actions and results, which can sometimes produce a yummy recipe, and sometimes not so much. How we react to a specific situation is subconscious on many levels, however, we can choose how we want to be, even in an uncontrollable situation. 

Just as we have many layers that create the fabric of who we are, we also have many emotions that influence who we are and how we act in a given situation, including a traumatic one. Sometimes when we don’t share our stories, we internalize these emotions, which can be toxic on many levels. Even though I am a storyteller and talkative by nature, not everyone in my life knows what I experienced or how I felt during this traumatic chapter of my life. I know my husband and other family members have their own stories, but here is mine, and I am glad to finally share it with a broader audience. I hope that some of you might recognize parts of yourself in my story and know that you are not alone, even if you feel like it sometimes. 

About the Author: As a certified Reflexologist, Reiki Master, Life Coach, and former international public health professional, Rachel has supported hundreds of people over the past 15+ years to find more balance, grounding, and calm in their daily lives. As a Life Coach, Rachel often works with parents who struggle to find the right equilibrium in their lives around relationships and health. Many of her clients feel overwhelmed and anxious, operating in fight or flight mode, which can take its toll. As a mother of a preemie herself, she knows how important, yet how hard it can be to stay true to oneself and also be a supportive partner and mother. 

Rachel founded Integrated Healing Vibes to fulfill her goal of working full-time as a healer, life coach, teacher and mentor. Her unique blend of skills and experience allows her to access many tools from her “toolbox”. Her unique program offers energy healing and life coaching techniques to help parents feel more grounded, calm, empowered, uplifted and at ease in their daily lives.

www.integratedhealingvibes.com Rachel’s email to contact her: [email protected]

This is part 1 in a 3 part series which was featured in the book; Her Badass Story 2 : Stories of Courageous Women Who Unapologetically Became the Badasses in Their Own Lives

Click here to check out and purchase.

Categories: Life After NICU, Life in the NICU, Mothers of Preemies, Parent Wellness, Parenting Preemies, Preemie Parent Voices, Pregnancy
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Baby Brave – a poem

April 6, 2023 by

by Suzanne Diehl

Dear Baby Brave,

I didn’t know you would come so early,
You came in March instead of June.
Our hearts filled with fear and joy hearing your first cry,
We hoped you’d be home soon.

I didn’t know how much I would love you.
The instant that we met, a room full of applause.
How proud I was to be your mom.
In the NICU learning you had beat the odds.

I didn’t know how tiny you’d be
Or how my arms would long to hold you.
My bravest baby,
My love would echo and surround you.

I didn’t know how to come home without you.
My heart filled with guilt and grief.
An empty crib by my bedside
while you slept among wires and beeps.

I didn’t know how my arms would long to hold you
How I would snuggle you in kangaroo care.
I’d keep that shirt on day and night,
Your scent is what I’d wear.

I didn’t know so many precious moments would be stolen from us.
I would feel so unprepared,
Each night, Daddy whispered, “I love you, Baby Brave.”
We had to leave you there, “Don’t be scared.”

I didn’t know the sound of the NICU would haunt me in my sleep
My heart raced with every A&B,
I’d cry because I felt so scared. 
At home how would it be?

7 weeks, 51 days, 73,000 minutes
Yearning to be with you behind glass
I didn’t know how fast you’d grow
And that these days would soon be past

Now I know what we’ve been through made us closer
Our bond is so unique
You won’t remember those days we spent waiting
But we look back just to think

What once seemed impossible
Is now the dream we live each day
Endless snuggles, smiles, and laughter
Fill my heart in every way

We’re thankful for this journey
And all the nurses, doctors, family who cared
We witnessed miracles every day
And have hope for the families who are still there. 

When you were safe in my womb,
I didn’t know the pain and struggle ahead of us.
That worries and fear would loom.
But nothing could prepare me for this epiphany of love. 
This endless love for you.
My Baby Brave.

Suzanne is a mother to two beautiful daughters, Norah, 5 years, and Natalie, 20 months. Norah was born at 28 weeks, 3 days in March 2018 due to pre-eclampsia with severe features. She weighed 2 lbs 2.6oz and her family’s NICU journey was both unexpected and very emotional.  Suzanne enjoys writing creatively and found poetry to be very healing throughout Norah’s 51-day NICU stay. Suzanne lives in the Lehigh Valley with her incredible, loving husband Daniel, their daughters, and dog Reese. She works full-time in the field of human services supporting individuals with intellectual disabilities, autism, and mental health diagnoses. Suzanne and her family are very thankful for all of the support they received during their daughter’s time in the NICU and hope to support others throughout their journey. They recently celebrated Norah’s 5th birthday and are so proud of all that she has accomplished! 

Categories: Preemie Parent Voices, Supporting Preemie Parents
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Leaving the NICU: The Reality of Discharge Day

March 31, 2023 by

by Hannah Botham

Today marks the twin’s one year anniversary of being HOME! Praise God for getting us through the NICU, the many miracles of healing in Margaret and Gianna, and for this past year of raising our girls at home.

Although today is the mark of being one year past the NICU, the NICU is still very present in me. I have never written about this trauma here on the blog, but I plan to change that starting today. Below is an entry from my NICU Journal. I wrote this a few hours before packing up our room and our girls and heading home. I pray that by sharing this publicly, it will help another NICU parent through the emotions, expectations, and reality of discharge day. God bless you!

I’m sitting here in room one, for the last time ever. And many thoughts are coming up for me.

Today is an ending. An ending to one of the most intense chapters of our lives. I’ve sat in this room for 72 days, waiting for THIS day to come. This room has held some of the biggest pains of my life, and also some of the biggest miracles.

The walls of this room have literally held me up in grief. I have found myself kneeled over in agony from watching procedures on our babies and I have leaned on the walls of this room. We have prayed some of our hardest prayers here, one of mine being “Lord please don’t take Margaret but IF YOU DO, protect my faith!” We have prayed some of our most grateful prayers in room one, when our daughters overcame breathing support, or hit the 3 pound milestone. This was the very room that I held my TWINS together for the first time. There has never been a moment so surreal and unique in my life, as when I realized that I grew two babies at the same time and was now able to hold them to my chest in awe and wonder at God’s goodness. This room has held some spectacular conversations between us and the staff, conversing late hours with the doctors about life. This room has held some very confusing moments, where we couldn’t wrap our brains around what was taking place before us. We have left our babies in this room countless times, in the hands of nurses who have rocked them, fed them and nurtured them FOR US so we could be home with our other children. This room has held so many moments of despair and yet moments of complete hopefulness too. This room is the room where I had my will stripped away from me more than any other time in my life, and this is the room where I began learning to trust. At the start of this pregnancy journey God spoke to me and told me these babies were my “trust twins.” I had NO IDEA how much He would ask me to trust that day. More than I thought humanly possible to surrender, I have surrendered more than I thought humanly capable to endure, I have endured, all right here in room one.

The one thing I never thought I’d feel in this room, was how hard it would be to leave. This room was a place many nights, where I had thoughts of running away from, when the pain was too intense for me to bare. I could not wait to get home, or so I thought. The day is here and I’m actually having a harder time leaving this room than I imagined. The fact is that this day is an ending, and endings have grief as a part of their nature. Endings mean loss. We will lose a lot leaving NICU: a loss of medical attention, a loss of familiarity, a loss of anticipation, a loss of support. There have been some intense memories here good and bad, but today we move away from their nearness as we leave this room for the last time. Everything that I’ve ever known of my babies has taken place in THIS one room. Since arriving, they’ve never been outside it, or even seen the daylight beyond it. Today changes a lot for us all.

I didn’t expect it, but I think the biggest trust actually begins today. I need to trust the Lord to be the babies monitor, doctor, nurse, advocate in ways that I haven’t needed to trust. I need to trust the Lord more with leaving the NICU than I ever did while enduring the NICU. I wish we could leave this trauma behind, and have today be a day full of ONLY joy, but the reality is that these 72 days have left a mark on our hearts that will never fade. And it doesn’t have to. I will learn to simulate this NICU experience into joy and gratitude for the miracles. I will learn to smile when I think of this birth and the 2.5 months lived here in room one. Why? Because although it hurt me and although it scared me, it has blessed me more than anything before. Leaving the NICU is an ending, but it is also a beginning. And I will trust the Lord to lead us through the next chapter, as He has lead us through this one.

Jesus I trust in you. Take my shaky hands and bless me with a calm trust in You today. We are leaving behind what we know, and walking out into total surrender to you. Jesus hold us close and show us each step to take. We trust you Lord. We love you. Thank you for what you did for us in ROOM 1.

About the Author:

Hannah Botham hopes this blog post offers encouragement and solidarity to those who have been through a preemie pregnancy and birth trauma and the NICU journey. She also has a blog – Hannanbotham.com where she discusses those topics as well as homeschooling, finances, marriage and more.

Hannah is married with 5 children, her youngest twins being her preemies. Her husband, Aaron and their children live in North Idaho.

Categories: Bringing Preemie Home, Mothers of Preemies, Preemie Multiples, Preemie Parent Voices
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Graham’s Foundation 2022 Annual Report

February 14, 2023 by

Categories: News
Tags:

Prematurity is….

November 22, 2022 by

by Christy King

I am the mother of a premature baby….I took my vitamins and went to all my doctor appointments. I did not eat certain foods or drink and still had a baby born at 23 weeks.

Premature birth can happen to anyone, at any time in their life. It can happen to you, your child, your grandchild, your best friend; it does not discriminate in who it chooses or why. When you are the parent of a premature baby your whole world will stop.

You will cry yourself to sleep at night and pray your baby lives another second, another minute, another hour, another day. You will ask God – if He so chooses – to take you instead of your tiny child. You will fall to your knees every time your tiny baby stops breathing.

You will be told your baby won’t survive and you will be given every reason in the world why you should disconnect the wires, tubes and machines that are keeping your baby alive. And you will be told you’re cruel for letting your baby live.

You will stop sleeping and every time your phone rings your heart will drop to the floor because you fear the worse.  If you’re blessed enough to make it home with your baby-sadly, some don’t!-you will know way too many medical terms that no parent should ever have to know. 

You will know how to work oxygen machines, give infant CPR, how to stick a feeding tube down their nose into their stomach.  You will learn sleeping doesn’t exist because alarms go off all night from the monitor sent home with your child that tells you when he stops breathing or his heart rate drops.  You will get thrown up on several times a day but, you will give thanks to God that your baby is here to throw up on you!

My daughter, Ella Mae Grace was born at 23 weeks, weighed 1lb, 4oz and was 10 1/2 long . Now she is 12 years old, 4’6″ tall and weighs a whopping 98lbs! She is a perfectly healthy and active girl. No one would ever guess she started so small.

 ***NOVEMBER 17 is National Prematurity Awareness day and the entire month of November is Prematurity Awareness Month!*** 

Please wear purple to bring awareness to this issue so someone you love doesn’t go home from the hospital empty handed!

Categories: Mothers of Preemies, Preemie Parent Voices
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Lessons from the NICU

November 3, 2022 by

By Megan Ueckert

I never really stopped to ask myself why this happened to me, but more so became upset that it was happening.  My husband Joe always would remind me that we’re a strong couple and there’s nothing that we can’t handle, and that God would only give us what we could handle, which became almost a mantra that we repeated through the IVF journey, and when I was admitted into the hospital on bedrest at 21 weeks pregnant when my daughter’s sac ruptured, and when our twins were born at 23 weeks 4 days, and during our 157 days in the NICU.  

While I also felt the truth of this, I couldn’t help but feel slighted or angry that things didn’t work out as I thought they should have from the way we got pregnant, to the loss of a full-term pregnancy and all of those experiences, to all the ups and downs of having NICU babies.  

At times the anger would be directed at different parties.  I was upset with work, thinking that the stress of my job put me into early labor, but who knows if that’s true.  I was upset with my doctor that she didn’t more closely monitor me or allow me to see a neonatologist even though I asked several times.  I thought that she should have caught some sort of signs that this was going to happen and do something to prevent it, especially since I was a high-risk pregnancy to begin with.  I was upset with her when I went into labor and had to have a c-section because the on-call doctor had told me they would do everything they could to delay the delivery and then once my doctor was involved, we were quickly moving to a c-section.  

I don’t know to this day if it could have really been delayed or if my doctor just wanted to get it over with and have the c-section.  There were times I was angry with the NICU doctors for not being able to tell me what was going to happen with my babies and feeling like they weren’t doing everything they could to help them.  I was angry with the NICU nurses for being more of a mom to these babies than I was. 

I am a planner by nature, and the entire journey caused me significant anxiety.  I hated that everything was unknown and that one day the babies would be making amazing progress and the next day they would be two steps back.  At one point, I sat down with one of the NICU doctors and he said to me that he could see that I was a type A personality kind of person and he said that he is too.  He continued to state that the NICU is hard for people like us and that you need to think about it like reading the Odyssey.  It’s a big book and you have to read each page in order, one at a time to understand the story.  Sometimes if you just try to skip to the end, you miss the story.  

This resonated with me and really helped me to change my ways in trying to control everything and learning that sometimes you really do just have to take it one day at a time.  I’ve noticed that this has impacted my view of things and I’ve really started to try and let go of the control.  Life is messy and isn’t always going to be perfect and no matter how hard I try to control it, there will be times that I just have to go with the flow.  Before this experience, if something bad happened I would get caught up in “this isn’t the way it’s supposed to be” and ask myself why?  I’ve learned that I need to reframe my thinking and look at the positives in the situation and see the growth that I experience through challenges. 

I wouldn’t wish the NICU on anyone, but for the moms that delivered a premature baby, I would say to take your time to mourn the loss of your image of what your pregnancy should have been, but don’t get lost in feeling sorry for yourself because there are lessons you will learn along the way that will change you into a stronger person than you ever imagined you could be. 

Know that the road is long, hard, and bumpy and that as much as you want to have the answer to the question everyone will ask “when will your babies come home”, that you just have to take it one day at a time and celebrate the successes and let the realities of the challenges set in.  It’s also easy to lose yourself in the process, but as you are there doing what you can for your baby, it is equally important to take steps for yourself as well. 

While my twins were in the NICU, I took the time to see a counselor to help me process all the emotions of everything going on.  It was helpful to have someone to open to even though she didn’t understand all I was going through so that I didn’t constantly feel like I was dumping on my husband. 

It also allowed me to heal mentally from the trauma…. yes, a premature birth is a trauma for both you and your baby.  You may continue to have PTSD when you learn of a friend who delivered a healthy baby or hear an alarm or noise that brings you back to a memory from the NICU, or when you drive down the same roads you once took to visit your baby at the NICU. 

I’m not sure you ever really heal from the NICU experience but doing what you can to prepare yourself mentally to be the best mother you can be when your baby does come home is so important.

Although I don’t know what the future holds and what challenges they may continue to face, I try to remember the advice of the neonatologist, when I asked when I can “stop worrying” as I sat in my hospital bed at 23 weeks pregnant uncertain of what the next few months would look like.  She said that I will worry about my kids until the day I die.  I know deep in my heart that while some days are harder than others, Lane and Grace will continue to be fighters their whole lives and will continue to teach Joe and I many life lessons.   

Megan Uekert is mom to boy/girl twins. Her husband Joe and their family reside in Texas. This is the sixth and last part in the part series.

If you or anyone you know is struggling after having a premature birth, please reach out to Graham’s Foundation for support and resources. www.grahamsfoundation.org

Categories: Preemie Parent Voices
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What Does Being a Loss Mom Mean

October 18, 2022 by

By Michelle Valiukenas

A few months back, I was on a friend’s podcast talking about my story and my work.  She asked me a question that I had not been asked before: Define what a loss mom is.  It took me a second or two, but I explained that it uses the word mom, which is what I am and what I have been throughout this journey, and it also uses loss which means it encompasses all the losses that have been involved.  

The “loss” portion of the term I choose to use includes of course my two most serious losses: Sweet Pea (lost at 7 weeks pregnant in 2017) and Colette (lost at 9 days old in 2018), but it goes beyond that to include the loss of conceiving naturally, the loss of control over when we would get pregnant, the loss of milestones of where I thought we would be, the loss of pictures in my mind, the loss of what I thought pregnancy and childbirth would look like, and so on and so on.

Since the time I got asked this question, I have tried to be more diligent in explaining it instead of just assuming that everyone around me understands the term and why I choose to use it.  But, what has kept standing out to me is that my explanation does not really encompass all that it means to be a loss mom.  Then, recently, when a good friend went through yet another loss, I sat down to really think about what these experiences mean going forward in an attempt to truly answer and truly give insight into the question: What does being a loss mom mean?

There are a lot of things it means and for most aspects, it also means a lot of layered, often conflicting emotions.

It means that I am always grieving.  Having another child, although amazing and wonderful, did not take away the grief.  Time does not heal, contrary to the popular saying.  I am always missing my babies and the picture of what I thought raising kids would look like, a picture that I was forced to redraw multiple times.

It means that when people post or share news of pregnancies, I am angry that it happens for them, but not for me, and yet I also have a feeling of panic and hope that they never have to go through any loss.

It means that at any given time, I have a handful (or more) of fellow loss parents who are currently pregnant or expecting and I have them in my heart and on my mind for however long their pregnancy lasts.  It also means that I have met so many loss parents in my journey of support so all those scary loss stories, I’ve heard them too, and have to not live in constant fear of them happening to me or someone else.

It means that when a friend has a loss, my heart breaks for them because I know all too well what it feels like and that I want to throw up my hands and give up and I want to scream and rant and rave at the universe, while also wanting to wrap my arms around my friend and take away their pain.  

            It means that I feel guilty A LOT.  Yes, mom guilt for all moms is real and it is big, but when you have lost a child, the guilt is even worse.  I worry about my son growing up spoiled because he will not have his big sister at home to knock him down a peg or two.  I worry that my son will one day be mad at me that we didn’t have more kids.  I worry as to whether keeping Colette alive as his big sister and talking about her is the right thing or if I should do it differently.  And all of this makes me feel so guilty because although I know this is not the case logically, it feels like it was my body at fault, my body that failed.

It means that simple sniffles or colds feel overwhelming to me.  If LL Cool T coughs, my mind instantly goes to it is Covid and he is not going to survive.  And while I am sure most parents are guilty of making these leaps, only loss parents truly know what that means and what that feels like.  It means that in the midst of a global pandemic, I was terrified to leave the house, terrified to take him out, suspicious of everyone we passed on the few times we did go out, because instead of fellow shoppers or patients, I see them as the causes for my child’s death.  

And yet at the same time, it has opened me up to be a more laidback parent, to say make the mess, have fun, and as long as you are here and alive, we are good.  LL Cool T gets into dirt, he plays with his food, he takes jumps and dives that I would never dream of doing, and yet, he does it with encouragement of his mom.  This is because I realized after everything we went through that following all the rules all the time does not necessarily equate to successful outcomes.  Plus, I learned that enjoying the moments for as long as we have them is really the most important thing.

            There are so many complexities and levels to being a loss mom, but the one that I think summarizes it best is that being a loss mom is forever being permanently exhausted.  Grief is exhausting, holding onto hope and worry for others is exhausting, battling your inner demons that say things like it is your fault is exhausting.  So, I will rest when I can, try to turn off my mind that is always going, and focus on the here and now.  

Michelle Valiukenas is the proud mom of her angel Sweet Pea, who she lost due to miscarriage, her angel daughter Colette Louise who she lost at nine days old, and her only living child, her rainbow baby, Elliott Miguel. Inspired by her journey with Colette, Michelle and her husband founded The Colette Louise Tisdahl Foundation, whose mission is to improve outcomes of pregnancy, childbirth, prematurity, and infancy, as well as aid in the grieving process through financial assistance, education, and advocacy. Their flagship program financially assists families dealing with high-risk and complicated pregnancies, NICU stays, and loss. The organization’s ability to help families relies on donations and grants and they are grateful if you are able to donate. Michelle also participates and advocates on issues of maternal health, maternal mortality, infant health and safety, and pregnancy complications. Michelle lives in Glenview, Illinois with her son Elliott, husband Mark, and dog Nemo.

Categories: Preemie Parent Voices
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157 Days

October 12, 2022 by

by Megan Ueckert

The NICU is a place that changes a person.  The sounds of babies crying and alarms sounding every second and lights flashing creates an environment of chaos and constant panic.  You learn more medical terminology than you ever thought possible as you ask your nurse and doctors about bradycardias and weight gain and feedings. 

Your heart will stop momentarily with every new test result.  You will have days you have to make hard decisions and days the doctors have to make the hard decisions for you.  You will have days that you want to scream because you can’t understand why this happened to your family.  Then you will pick yourself up because you have no other choice.  

You will feel like your baby’s medical team is more of a parent than you are as they are telling you what the different cries mean or the way your baby likes to be held. You learn that you can’t plan or anticipate anything and as hard as this was for me, you just have to take it one day at a time.  You will feel so sad that the majority of your child’s first months of life will be spent being poked and prodded for lab tests and assessments and will lay in a crib alone in a hospital all day instead of at home in your arms, and that they may feel more comfortable with their favorite nurse than they do with you. It’s heartbreaking to look out the window at the sun with anticipation of the day, your baby could go outside to feel the sun’s warmth on their face or a cool breeze.

The week of Christmas, I received the news that my son would be able to come home.  I was so excited that I could finally answer the stabbing question “when will they come home”, but it was bittersweet that my daughter would remain in the hospital alone as we continued to work on her feeding.  I remember one of the NICU nurses telling me that the last few weeks are sometimes the hardest.  You are ready for you baby to come home and over the NICU experience and just want to try and hurry up the process to get home.  

This resonated with me as I became frustrated trying to get my daughter to take a bottle or breast or anything.   She wouldn’t wake to feed or would eat very little.  I tried to play games, sing songs, hold her different ways, try different bottles and nipples…anything to try and get her to eat so we could just go home.  There were days where it felt like she was finally getting it and then the next day she wouldn’t eat anything.  

The decision was finally made to transfer her to a children’s hospital for a swallow study and evaluation for possible g-button.  The teddy bear transport team came with their incubator on wheels to pick my daughter up to transport her to the downtown hospital.  It all seemed to happen so quickly that I wasn’t able to say goodbye to the family I had made at the NICU.  

When we arrived at the new hospital NICU everything was different, all the processes and rooms and people.  I felt overwhelmed like I was entering the NICU all over again.  The people I had grown to trust with my babies weren’t there and the hospital seemed so big and impersonal.  I think my husband felt the same way when he would visit and feel somewhat lost as to who everyone was that would come into our daughter’s room.  I had to remind myself that some of the sickest babies are the ones that come to this hospital and by their standards our daughter was probably one of the healthier ones at that point.  

Although we were in what seemed like a foreign space, I was there every day trying everything I could convince the nurses and doctors to try to get my daughter to eat.  After a month of pleading and convincing the doctors to give my daughter more time, we finally made the decision to move forward with the g-button surgery.  Yes, I wanted her to go home and simply saying yes to the g-button probably would have gotten her home earlier, but I was pulling for her to figure out the whole eating thing.  I hated to think about her being put under for a surgery and was scared about her ever learning to eat and what her life would like if that was the case.      

157 days after giving birth, my family was finally all under one roof where I could cuddle them anytime I want, learn their different cries, and be the one to put them to sleep at night.  The journey was exhausting and nothing I would wish upon anyone, but if it had to happen to a family, I’m glad it happened to ours.  After being born at 23 weeks 4 days by emergency c-section and months in the NICU, Lane came home on oxygen and Grace came home on oxygen and with a g-button.  

I would imagine any new mom is terrified when she brings her first baby home from the hospital.  I mean, it’s not like the hospital sends you home with an instruction guide.  Bringing twins home with wires and tubes certainly intensified my anxiety, but my husband Joe always assured me that we could handle it.  I kept thinking, hey…at least we’re all home now.  This is when we get back to normal life, right?  

Our twins were both home in January, so as hard as it was, we had to ask family and friends to stay away from fear of RSV.  We let them know that hopefully once RSV season was over, they could finally meet our sweet babies.  Well, March 2020 changed everyone’s lives across the globe with the introduction of the COVID-19 pandemic.  

Our family remained in voluntary lock-down for pretty much the next year, only allowing select family members to come see our babies.  Both our son and daughter were receiving therapy through Early Childhood Intervention services and the therapists quickly became our new family as there were some weeks where they were the only other people we saw.  Even though we were now home from the NICU our family had to continue to learn new medical terms and work with doctors, nurses, case workers, and insurance companies to advocate for their continued health and success.  I truly feel that our ability to educate ourselves and advocate for our babies was critical to the level of care and ultimately their health outcomes.

Now our little warriors will be turning 3 years old shortly.  Both are off oxygen, and our daughter eats anything you set in front of her.  I know the journey for both is long from over as we continue to work with therapists and do everything we can, to ensure they aren’t developmentally behind.  It still amazes me today, when I think back to the first time I saw them with gummy bear like skin and eyes fused shut and how many times their stories twisted and turned and could have ended up a million different ways. 

Megan Ueckert shares her pregnancy and NICU journey with Graham’s in this special series.  This is part 5 of 6.

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