Courageous Moms | Stephanie - Lynzy & Co.

Courageous Moms | Stephanie

I hope that by meeting these courageous mothers that have navigated their way through the toughest of circumstances, they can be uplifting and encouraging to those of you who may be experiencing the same. If you ever want to submit your story for consideration, you can always email me at: lynzyandco@gmail.com with a little snippet of what you would love to talk about! 

MEET STEPHANIE

Thirty[something]
By our parents’ standards, we got started late on trying to get pregnant. John and I started dating when
we were practically kids. Me 19, him 20. We spent our formative 20s learning to grow up together,
traveling as much as we could, and establishing our careers. I finished my master’s degree at 26. Cue
marriage and a house in the country and before we knew it, we were 30. We knew it was time. We were
ready to become parents. To try our hand at making and raising another human, we just never knew it’d
be so difficult simply getting there.
After a year of natural endeavors, we knew something wasn’t right. Nothing had happened. My
background as a Special Educator gives me a unique perspective on child born to mothers x years old or
greater and time wasn’t on our side. There are many mothers who have had children well into their 30s
and those children and their families are perfectly healthy and happy, but I’m a natural worrier. A natural
planner. I’d had my heart set on being a mother and now things weren’t going according to plan. Gyno
sent us to a fertility clinic for a battery of tests and consultation. Apparently, I have low ovarian reserve
making it unlikely that John and I could conceive without medical intervention. Instantly, I felt like that
couple from the opening scenes of Idiocracy. And I’m not talking about Clevon and Brandy/Britney/Trish.
Waiting until the time was just right had meant it was just wrong when it came to my fertility. Had I waited
too long? Had I missed my chance? I wanted badly to be a mother; it was devastating.
All told, we had less than a 5% chance of having a baby. The clinic put many options in front of us,
including adoption. But I knew I wanted to be a mother, I wanted to at least try for our own first. I’m not
opposed to adoption, but if medicine could help, I wanted to try. Thus, we began the long two-year road of
hormone treatments, five failed IUI’s, months of nausea, vomiting, appointments, needles,
disappointment, 1 round of IVF, and finally, we were pregnant.
The joy of the positive test and the first glimpse of a dot on an ultrasound didn’t last long; we never even
heard a heartbeat. I’d shared the news with some of my immediate family over Thanksgiving and the
Monday after, we lost the baby.
I’ll never forget being 10 weeks pregnant and hearing the doctor say,
“There’s not a baby anymore.”
I had not told many people we were doing fertility, and told even less we miscarried. It’s not as if I was
ashamed or wanted it to be a secret, I just did not want people asking me about it constantly, especially
with fail after fail for two years. I was so hormonal, I may have just sobbed at the simple question, “how
are you?”. It felt so isolating to keep it from so many, and heartbreaking to lose our baby after 3 long
years of struggle. I could not attend baby showers, and seeing a pregnant woman would just break my
heart.
Strange Words
Fast forward some months later and insert hardcore acupuncture, puppy adoption, copious amounts of
adult beverage, a weekend away in Assateague and we were ready to start again. The bell sounded for
IVF Round 2 and we jetted off to a Disney vacation with John’s family. We’d used embryos from the
same batch as the first round and we did the transfer right before we left. The trip was just long enough
that we’d know when we got back.
Having ourselves a ‘magical day’ continued right on through to our return home because we were
pregnant!
This time, we heard the heartbeat early, and at 12 weeks I reluctantly let them discharge me from the
fertility specialist. They’d done their part and it was time to turn it over to the ones that deal with messy
part. We did the standard testing, including the genetics at 12 weeks. Complications. Because the results
weren’t within the normal ranges, we were referred to a high-risk clinic and they determined that I had low levels of PAPP-A and restricted blood flow to the

placenta. While neither was immediately impacting,
they could lead to preeclampsia, IUGR, low birth weight, hypoglycemia, low resistance to infection, or
difficulty for the baby to handle the stress of delivery. Add to that, I was already having a difficult
pregnancy. Constantly nauseous, daily vomiting, and the piece de resistance, hyperemesis gravidarum. I
continued to work, but was finding it harder and harder to function in society. Immediately home and
braless after work, I found solace only in my bed. And that solace was only temporary – I’d undoubtedly
feel the waves of nausea, the splitting headache, the dizziness, and the random sudden onset of violent
projectile vomiting. Being high-risk, I had weekly ultra sounds, check-ups, and bloodwork. I’m still amazed
how infrequently my friends and family who are currently or have been recently pregnant saw their baby
while carrying. I saw Addie weekly. I constantly knew what she was doing, saw the changes in her
development. Even through the grainy, scrambled cable channel monitor, I was forming a connection with
her. I can’t imagine not being able to see her for months. At my 23-week check-up, my blood pressure
was worrisomely high and I was put on bedrest but could work from home. At my 24-week check-up, it
continued to climb and I was diagnosed with preeclampsia and began bedrest without working from home
. At 26 weeks, it was considered severe and I was sent to the hospital. Hyperemesis gravidarum and
preeclampsia. John never heard these words before they became my reality and he still thinks they sound
like something out of a sci-fi epic. The ship, with its hyperemesis gravidarum drive reached the distant
planet of Preeclampsia in mere months.
Zucchini Baby
What we thought was going to be an admission to the hospital for aggressive, monitored bed rest quickly
turned into a stream of doctors entering the room and prepping us for the potential of giving birth. Just a
few hours earlier, I never would’ve thought this would be happening.
After years of fertility futility, we were quickly faced with the reality that our child was going to be born
much too early. 14 weeks too early. Maybe, in a society where we didn’t have access to the internet, this
wouldn’t have been quite so frightening. But you’re reminded, week-by-week by the ‘What to Expect’ app
reminder on your phone of the relative size of your baby compared to various fruits & vegetables, and it’s
hard not to be terrified. Knowing that your child is roughly the size of a zucchini is mind-blowing. Knowing
that this zucchini baby was going to be out shortly is even more difficult to grasp.
At 26 weeks pregnant, Addie was born via emergency C-section. Soon after arriving at the hospital, they
started me on magnesium and sent in the attendings for each of the teams that would handle the delivery.
The head of the high-risk pregnancy division, a neonatologist, an OB GYN, a respiratory therapist, and an
anesthesiologist. Oh my.
“If we don’t deliver now, you may not live through the night.”
“If you do deliver now, she may not live through the night.”
Babies are born early all the time. Premature birth isn’t something new and the advances they’ve made in
this field are incredible. But the reality still was that she was 3.5 months from being fully baked. There
were no guarantees. Even if alive at birth, they told us it’d be an uphill battle.
Through the dense brain fog of the magnesium, it was a hard thing to understand and most of the hours
leading up to it are a blur for me. But one thing that did register was when they said, “She may not
breathe on her own, so you may not hear her cry.”
When we did finally deliver, we heard a tiny cry, like a lost kitten echo through the hollow cavern of the
delivery room. It was like a sign – she was here. She would be heard.
At 1lb 8oz and 12 inches long, she was tiny, even for her gestation. Never have it felt so much joy and
terror at once. Our baby was here. But at the same time, our baby was here.
Immediately thrown into an unexpected NICU journey, it didn’t get any less scary. Aside from all those
typical preemie things, Addie got NEC at 3 weeks old, she had a IVH, struggled to grow and handle

feeds, and ended up needing surgery at 3 months old for a blockage in her intestines. A 3-pound baby on
the operating table. After 114 long days, we left the NICU. We were through the worst of it.
Right?


Not Done Yet
Not quite. Not by a long shot. Since the day she was born and those long months spent in the NICU,
we’ve continued to fight through complications stemming from the injury to her gut as a 3-week old inside
her isolette and now diagnosis of short bowel syndrome. I left my job as Director of Education, she has
spent most of 24 months on this planet in the hospital and her 9 th surgery is scheduled in just a few short
weeks. She has to be fed via GJ tube and via central line, and we are still having difficulty getting her to
grow. She is in early intervention for everything, genetics tests pending, and a possible diagnosis of
cerebral palsy on the table. We have also recently transferred her care from Baltimore to Boston so we
are currently traveling back and forth so she can be a better hospital who is know for treating her rare
disease.


I’ve gotten through some of this journey because of the love I have for Adeline, John, close family, and
Adeline’s godmother. Another big support has also been social media, as crazy as that sounds. The
parent groups on Facebook for short gut and the connections I have made on Instagram have been
essential to helping me to become a stronger medical mama and made me feel not so alone. Now that I
have been doing this for the past two years, I want to give back to the community and help other parents.
We recently started a blog called SheGotGuts (shegotguts.com) which we post articles about prematurity,
motherhood, fatherhood, infertility, medical tips and tricks, and early intervention. It continues to expand
our little community and I love connecting with other parents who are going through something similar.
The journey to motherhood has been a challenge so the moment I began. Everything has been a
struggle, a sacrifice, it has been riddled with anxiety, guilt, and heartbreak. But , I wouldn’t trade an
ounce of it for the joy that fills my heart now. No matter what, I’m grateful that she’s here and that I’ve
been given the opportunity to be her mama. I was meant to be her mother, to advocate for what is best
for her, to spread awareness about short bowel syndrome, and help her reach her full potential. If there is
any good reason to sacrifice, to worry, to struggle, it is for your child. My calling I once thought was to
work with children with autism, but it is now to be Adeline’s mama.
I’ll quote a song that we used in a slideshow video for her first birthday because it says it best.

I open my eyes, each morning I rise
To find the truth I know that is there
Im lucky to breathe, Im lucky to feel,
Im glad to wake up, Im glad to be here
With all of this world, and all of its pain,
All of its lies, and all of its let downs
I still feel a sense of freedom 
So glad Im around
Its my freedom, cant take it from me
I know it wont change
But, we need some understanding,
I know well be alright
(Soja)

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Tell Me What You Think! leave a comment...

  1. Wow!! You are a stronG, strong mama! My daughter was Born with a genetic disorder and received a liver transplant at 10 months old. Its so hard to see our babies struggle but they are stronger than we can ever imagine and we’re lucky To be their Mamas!

  2. Thanks for sharing your story!! I have walked in siMialr foOt steps, our first Was born a little over 28 weeks GESTATION 2lbs 12 oz in Denver, co. As Much as i thought we struggled i know i have so much to be thankful for! 8 weeks In the Nicu and living in the ronald mcdonald house felt as iF it would never Be over.
    Your daughter is a lucky little girl with one driven and caring mother! 💜