SERIES PART 2: TRACHEOESOPHAGEAL FISTULA – FROM NICU TO TWO

DIAGNOSIS AND DESCRIPTION

Our initial NICU consultation offered us little hope. And the somber, blank expression on the nurse’s face while delivering our news, has been burned into my memory. With her words, our son’s birthday became the best and worst day of my life all in one.

Leaving the NICU, I didn’t think our son would survive, and I couldn’t wrap my mind around it. How could a baby who looked so perfect and healthy be so broken on the inside?

I was empty and incomplete. I just wanted to hold him, and our separation paired with the distance to the maternity ward, was unbearable.

When we finally reached my room, we were greeted by an unfamiliar nurse expecting two people in a celebratory mood. Smiling ear to ear she greeted us, “Hi! Congratulations! How are you feeling, Momma?” “Not good,” was all that I could get out.

I had been living in the hospital for 6 weeks, but in another ward. Here, strange nurses were asking me questions about myself that I wished they already knew. I wondered why, after all this time (and in a time like this) am I being asked questions about myself?

The new and unknown nurses teamed up to transfer me from my OR bed to my new bed. I can’t lie, it really freaking hurt. All feeling had returned to my post-op body. Everything was setting in. And just then, nurse Peggy walked in. I burst into tears.

Nurse Peggy was one of my antepartum nurses and more. In addition to providing care for the previous six weeks, she had become a sort of maternal nurturer to me. And to no surprise, here she was, hugging me like a daughter, while letting me sob into shoulder.

Patient with me while I tried to stop crying, she was still in the room when the surgeon arrived. I told her she didn’t have to stay. Of course, she didn’t listen.


Now, it is no exaggeration to say our whole life changed when the surgeon began speaking.

Smiling and confident, he said the words we were least expecting. Our son’s condition was treatable with surgery. And more, he assured us our son’s life-saving operation had a near 100% survival rate.

Looking at each other in disbelief, my husband and I tried to make sense of his words. The surgeon continued, “Surgery needs to happen soon. These babies can only get nutrition through an IV and it doesn’t keep them satisfied for long.” Our son’s operation was scheduled for the following morning.

We were warned our son would be on a respirator following surgery, and would need additional exams to determine whether or not he had further, associated complications.

In turn, we asked him questions about our son’s future that he couldn’t answer with certainty. But, at last, we had reason to believe that our baby could survive. And to top it off, we were given permission to return to the NICU. We were finally going to be with our son.

It took months, maybe years, for the fear and shock of our son’s diagnosis to wear off of my husband and I. We’ll be grateful everyday for the rest of our lives, but we still don’t understand why we were given zero hope that morning in the NICU.


So what is tracheoesophageal fistula? Here are some quick facts, with links to the supporting medical websites below:

  • Tracheoesophageal fistula is a birth defect where the esophagus and trachea (airway) have an abnormal connection
  • TE fistula often occurs with esophageal atresia. Meaning the esophagus grew in two parts. One part connected to the mouth, the other part connected to the stomach (see below image)
  • The only way for these babies to eat and drink on their own is with corrective surgery. The surgery needs to create a full and secure connection between the mouth and stomach via the esophagus, and between the airway and lungs via the trachea
  • TE fistula occurs in approximately 1 in 5,000 babies
  • Up to one half of babies with TE fistula also have another serious birth defect including heart, digestive tract, kidney, and muscular/skeletal problems. X-rays and further testing would be necessary
  • TEF was a “hopeless congenital anomaly” not long ago. The first successful repair surgery was not until 1941. With survival rates nearing 100% only in the last few decades

For TEF SERIES PART 1: PREGNANCY AND DISCOVERY, visit:

https://believableshe.com/2021/06/03/series-tracheoesophageal-fistula-from-nicu-to-two/


REFERENCES

https://www.stanfordchildrens.org/en/topic/default?id=tracheoesophageal-fistula-and-esophageal-atresia-90-P02018

https://www.akronchildrens.org/kidshealth/en/parents/te-fistula-ea-html.html

https://www.medscape.com/answers/186735-99657/when-was-the-first-successful-repair-of-tracheoesophageal-fistula-tef

SERIES PART 1: TRACHEOESOPHAGEAL FISTULA – FROM NICU TO TWO

PREGNANCY AND DISCOVERY

***Please be advised. This story contains medical descriptions.

When our son was born with a pair congenital defects called tracheoesophageal fistula (simply known as TE Fistula or TEF) and esophageal atresia, we had no warning. My husband and I found out the day he was born, and we were offered little more than surgical plans.

Desperate to know what this diagnosis meant for our son’s future, we scoured the internet for real-life stories. What we found couldn’t even be considered a hand full, but they were our life-line.

With hopes of providing peace to families who are, or will, find themselves in a similar situation, I am sharing our story through a series of posts called, Tracheoesophageal Fistula – From NICU to Two

If you, your child, or loved one has gone through this diagnosis, I encourage you to comment, ask questions, and share your experience. Your stories matter.


My pregnancy was riddled with complications. I begin our story here because many of these complications disguised themselves as common conditions that do not indicate TEF. Looking back, it is now clear that I had a very specific combination of factors resulting from our son’s defects.

In my second trimester, I was diagnosed with a case of placenta previa. Initially, the condition was described as mild enough to correct itself. So when I began hemorrhaging at twenty-six weeks, it surprised me and my OB.

Needing constant observation, I was prescribed hospitalized bedrest. While hospitalized, I had numerous ultrasounds. None of which detected TEF.

As my pregnancy progressed, I also began leaking amniotic fluid. Although concerning to my doctor and nurses, I had an unusually large volume of fluid, so they assured me our baby was safe.

The danger of too much fluid, however, lies in the fact that it can cause the uterus to expand too fast. This expansion caused my placenta to begin detaching from my uterine wall. This detachment caused my bleeding to become more frequent. And my frequent bleeding led to an emergency C-section at 34 weeks.

In utero, babies practice swallowing by “drinking” amniotic fluid. TEF meant that our son’s esophagus did not connect his mouth to his stomach, so he could not practice this developmental step. This lack of practicing caused fluid to build up, and led to severe bleeding. This is the warning that was missed.


I was anesthetized for my emergency C-section. Due to risk of severe bleeding, I could not have a spinal block and my epidural made me sick. Not being numbed enough, I felt the first cuts into my abdomen, and I begged to be put under.

The first thing I remember after waking, was a nurse telling me I had a beautiful baby boy with sandy blonde hair. She was kind and smiling, and assured me that I could see my baby soon.

Though feeling hazy, it didn’t seem too long before my husband was allowed to enter post-op. Joined by a nurse (or two) we were brought to our son. Still laying in my hospital bed, I was wheeled through the halls to the NICU. I remember feeling disappointed that I wasn’t awake to greet my son, but so excited to hold him for the first time.

Being wheeled in on a bed drew attention, and I was uncomfortable feeling every eye on me as we entered the NICU. But then I saw him. Lying on his tummy, in his incubator, beautiful as could be.

Because of my complicated pregnancy, we knew he would be premature. We were previously prepped by NICU nurses, and his IV, mass of cords, and beeping monitors didn’t scare us. But I still remember shaking while reaching through the incubator hole to touch his sweet baby back as gently as possible. I remember telling him that he was perfect.

There was a full team of nurses surrounding us and our baby. A few in scrubs, and one in office clothes. Given the circumstances, the amount of people didn’t seem strange. But then the woman in office clothes started talking.

I am paraphrasing today, because the next several minutes were honestly a blur. But she said something to the effect of, “We need to talk. There has been an unforeseen complication.”

Her face was serious. Her words were frightening. Still recovering from anesthesia, her words came at me as fractured bits and pieces.

“You can’t hold him right now.”

“We couldn’t get a feeding tube down his throat.”

“He needs more tests.”

“Tracheo…fistu…”

“He’ll need an operation.”

“We don’t know… We don’t know… We don’t know…”

“Time to go back to your room. The surgeon will be in to see you.”

With only moments to spend together, I told my son I loved him, and he was still perfect. Then, confused, heartbroken, and expecting the worst, I was wheeled back to the maternity ward without him.


For TEF SERIES PART 2: DIAGNOSIS AND DESCRIPTION, visit:

https://believableshe.com/2021/06/08/series-part-2-tracheoesophageal-fistula-from-nicu-to-two/

PROUD TO BE A WORK IN PROGRESS

Disclaimer: I wrote the below as a feature for a local organization called Women’s Work in Progress. Before getting into it, I would just like to say a heartfelt *thank you* for reading and supporting my blog. I am overjoyed by the amount of feedback I have received from people sharing similar experiences. And I am humbled by the writers, far more experienced than I, who have commented, followed, and encouraged along the way. You keep this tired mom going!🌺

In 2019 I moved to the suburbs with my husband, infant son, and two dogs. I had a successful yet uninspiring career in accounting, and thought this was what my life would be until I retired. Then 2020 happened.

Betweeen meeting work deadlines during toddler naps, and struggling to gain the trust of a manager who reluctantly approved remote work, I was burning the candle, not just at both ends, but in the middle and all around.

Overanxious and underslept, writing was my salvation. Through writing, I was able to cope with an unrelenting year, and eventually, reconnect with a community similarly in need of healing.

With empathy-promotion in mind, I created BelievableShe.com. A blog where I write to encourage women (and myself) to discover their rightful identity by confronting and sharing difficult truths. Over several weeks and sleepness nights, the support of readers energized my passion project and I became hooked.

My creative outlet brought inspiration back into my life, and there was no going back. Deciding to commit more of my life to writing, I made the leap, shelved my “successful” day job, and took an evening position as a restaurant server. In short, I am a post-pandemic work in progress, and proud.

A COMPLICATED HOLIDAY – THE IMPORTANCE OF SUPPORTING WOMEN WHO GRIEVE ON MOTHER’S DAY

The stats are in, moms had it rough last year. With so many either out of work, forced to take a cut in hours, or strapped with the impossible task of remote work while educating home-schooled kids, Mother’s Day 2021 has been well earned.

But this year and every year, let’s also take a moment to acknowledge the women who are currently praying to become a mother, wishing that their mother was in their lives, or both.

Because whichever category (or categories) they fall into, the feeling of facing a holiday that specifically targets the epicenter of their pain is incredibly isolating.

I am just one woman, with one woman’s story to tell. But I hope that my story will shed light on what someone in your life might be experiencing this May 9th, 2021.


My heart sinks, and my palms sweat as I begin writing this. The sheer thought of Mother’s Day gives me such a visceral reaction that I’m nearly ill. And it’s happened every year for as long as I can remember.

Vividly, I can remember being confused by Mother’s Day as a child. Confused and left out.

In grade school, I recall students and teachers celebrating the holiday by presenting flowers and cards to moms making lunchroom cameos. I would watch kids proudly gift their crafts to mothers who, lovingly and gratefully, cherished their personalized tokens of appreciation.

“Who are these people?”, I would think to myself. “How did these kids get moms that seemingly adore them AND participate in school functions?” The concept was almost unbelievable.

I do remember understanding that my mom’s job prevented her from being present. But I also remember the look on her face when I would finally deliver my artwork to her after school. If the look of utter waste of time didn’t say it all, finding my work in the discarded pile of mail definitely did.

It was probably a dumb gift anyway. I’ll do better next year.

As an older teenager, and as a woman in my twenties, Mother’s Day became a Hallmark holiday. Just another way for the Target card display to pressure me into deciding whether or not I should buy a card.

It wasn’t a difficult decision, but it was an awkward one. If we were on speaking terms that year, a card was in order. But then the next challenge would begin. Finding one with the least amount of sentiment.

“Blessed To Have You As My Mother”… Umm, no. “I Hope I’m Half The Mother You Are Someday”… Hard pass. “Happy Mother’s Day, Hope It’s Nice”… Perfect.

What a waste of $3.99. Maybe next year I’ll just say no.

In my thirties, salt was added to the Mother’s Day wound. Infertility.

For five years, I would fight the urge to spend the day in bed. And while holding back spontaneous tears, I celebrated with other people’s mothers.

Every year, my extended family threw a terrific Mother’s Day brunch. And don’t get me wrong, it was always a nice time spending the day with my grandma and aunts, but the subject I dreaded most would always manage to come up.

“Someday Christina, we will be celebrating you.” Or worse, “Any news to share with us this year, Christina?”

No Grandma, maybe next year I’ll be a mom, maybe.

Then 2019 came. After a successful round of IVF, I was pregnant with my son, and I was a mom. Finally. I could not wait to wear my maternity sundress, and brunch with the other women in my family as a member of the club.

What I didn’t anticipate, was the reality of Mother’s Day 2019. I wouldn’t be pregnant and glowing, but instead, living in the NICU and praying.

I was gratefully a mom, but quarantined to a room filled with cords and machines, “holding” my little boy through the holes of an incubator.

Next year is my year. Not only will I be celebrating, but I will be celebrating while showing off my sweet baby boy.

4 Days Old – 5/12/2019 – Mother’s Day

Now, the irony of being quarantined in 2019 (while thinking that it was a temporary situation) is not lost on me. But honestly, when our next spring celebration was cancelled due to Covid in 2020, I practically expected it.

And this year? This year I will be celebrating other people’s mothers once again because I took a job as a restaurant server just in time for Mother’s Day 2021.

Genius. Oh well, maybe next year.


To all the women who will be grieving instead of, or while, celebrating this Mother’s Day…

My heart goes out to you. You aren’t alone. It’s okay to cry. You will get through the day. And I hope you find reasons to celebrate your life every chance you get.


8 Days Old – 5/16/2019

I wasn’t blessed with a loving mom, but I am a loving mom, and I will celebrate that every chance I get.

LIVING WHILE WAITING

Today, the residents of Minnesota’s Twin Cities are living while waiting, myself included.

Collectively, and regardless of what outcome we’re individually anticipating, we are waiting for a jury of our peers to decide if a police officer is guilty of murder.

Simultaneously, while wondering what world we’ll be living in after the results are read, we are waiting to find out what precedent for accountability will be set and what chaos will ensue.

Will sleepless nights of riotous noise, indistinguishable from gunfire and bombs, return to our communities? Will our black neighbors have to continue living in fear of a traffic violation? Will all law officers continue to be judged upon the actions of those who, without consequence, abuse their power?

So, with all of this waiting going on, I can’t help but wonder, how is everyone managing? What action or inaction is appropriate right now? What do we do while we wait and wonder? How do we combat feelings of helplessness?

As comforting as our morning beds are before we’ve accepted the realities of our day, it’s just not practical to maintain that blissful state of ignorance. We need to figure it out. We need to earn a living. We have to keep going.

So we fight through the fog of living in limbo and manage.

Some, terrified that their livelihood is in jeopardy, are managing by boarding the windows of their businesses. Activists, hoping to influence the outcome, are managing by marching for action in the streets. While others are ignoring the news, but managing by quietly praying for peace from their homes.

How do you manage to carry on while waiting for a life changing event? Do you mentally prepare by obsessively researching online articles? Do you pray? Do you live in avoidance and just stay busy at all costs?

No judgement here. Because what am I doing? I’m sitting at home, hanging out with my toddler, and struggling to wrap my mind around what is morally appropriate to write about today.

The only conclusion that I can come up with is the fact that there really is no wrong way to survive limbo. We just have to do it. To put it plainly, limbo sucks, and it’s a confusing place to exist.

So keep fighting, keep preparing, keep managing. Just keep living while waiting.

IN PURSUIT OF COMMONALITY – RECONCILING WITH MY FATHER

The strangeness of being raised by a family that doesn’t look like you comes and goes over time. But the racial inequities that exploded to the surface in 2020 birthed a reckoning, and this reckoning made me yearn for commonality more than ever before.

I was reeling from an election season that exposed unfathomable bigotry. Damaging bigotry exposed in neighbors, friends, and family. And with the loss of each friendship, I reflected on prejudicial origins.

Soul-searching with refreshed eyes, I reflected on the prejudices that I have held, along with the prejudices that have been held against me. And as I reflected, I found myself seeking out the previously unknown side of my family. The family that looks like me. The family that may be able to relate.

Eventually becoming exhausted by sleepless nights of scrolling marriage certificates and obituaries, I realized that I had but one lead to follow. It was time to contact my father.

For more than twenty years, largely through social media, I kept tabs on him from a safe distance. Just in case the time would come for a relationship, I monitored his whereabouts.

Without getting into the details of why I waited twenty years, I will say, my younger self was simply not prepared to deal with the demons that he fought in his own life.

But with that being said, I still had hopes that things would be different this time. After all, now I am an adult, a mother, and a woman that has made great strides in the way of self-assurance.

Perhaps he was different too? Maybe, now that I didn’t need him as a parent, we would be able to connect as adults. Connect over life stories, family members, social concerns, racism.

So I did it. I threw caution to the wind as they say, and fired off my first sign of life via Facebook. And at first, things went surprisingly well. He was genuinely excited to hear from me. And while rapidly bringing me up to speed on our shared family members, he gleefully forwarded cousin’s photos, uncle’s birth dates, grandparent’s death dates, and every date of meaning in between.

Then it happened. The cracks that would destroy my hopes of having a social justice comrade for a father began to appear. And it all started with a Youtube video that he shared.

To my horror, my father sent me an argumentative video detailing how BLM activists orchestrated the insurrection at the capitol. And it didn’t stop there.

Relentless and with something to prove, he forwarded conspiratorial articles and conservative podcasts. All the while, repeatedly using language with discriminatory undertones. Even as I made polite attempts to get him to change the subject, his attempts to influence and persuade persisted.

Exasperated, I made my stance on these issues abundantly clear. In defense, my father used his own brown skin, and the fact that he has black “friends”, to justify his opinions.

Sigh… It became glaringly obvious, the camaraderie I sought was not coming in the form of my father.

So where does a parent/child relationship go from here? Do I retreat back to the shadows as a Facebook stalker? Hopefully not. Despite our differences, I would like to stay in touch. But with enormous conversational boundaries in place.

And as for my quest for commonality?

I realized that I had it all along. The people in my life that stand along side me today, may not provide commonality in genetic features, but each one provides the benefit of commonality through shared experiences and principles. Like they say, you can’t pick your family, but you can pick your friends.

SO I STARTED WRITING…

I have been gifted a journal three times in my life. Once as a girl, once as a wife, and once as a mother.

As a girl, it was a pale pink Precious Moments diary (complete with lock!) and it was from my mom. I was still a lonely only child when I got it. So I addressed it as a “friend” named Samantha. And I told that girl everything.

Long story short, diary locks do not really lock. And it only took one evening of parental shaming for me to never touch it again.

Fast forward to about 25 years later, and my husband gave me a journal for my birthday. We were beginning IVF treatments, and he thought it would be amusing to have a chronicle of our path to becoming parents.

Well, it became more than amusing. When IVF turned into a complicated pregnancy, and I ended up on hospitalized bed rest, it was my sanity. Not feeling up for many visitors, it was how I processed my fear of losing our baby, along with my grief from not having the pregnancy of my dreams.

But thank goodness, I eventually left that damn hospital. (And with a beautiful baby boy!) Needless to say, once our little guy arrived, and I stopped sleeping, that journal didn’t cross my mind once.

And finally, the third time I received a journal, it was from my sister during a pandemic. (Maybe you remember it?) And I remember thinking to myself, “How sweet… My baby sister thinks that I have time to journal while working from home, taking care of my out-of-daycare toddler, and watching the world as we know it crumble apart.”

What I didn’t immediately realize was the fact that I was once again isolated from the world, and the timing was actually perfect. My inner monologue was making me crazy and I needed an outlet.

So I started writing…

At this point, I think it’s safe to say out loud that writing is phase one of my “Discovery” project. And if writing keeps filling my days with the same purpose and ambition that I’ve been feeling over the past several weeks, maybe it’s also safe to say, I have discovered a piece of my identity.

OBTAINABLE FETISH – A WORD FOR THE “EXOTIC” GIRLS

From a young age, you received signals that marrying a white man would raise your status.

Signals from the media, from society, signals from your mother.

The signals that devalued your male counterparts were so strong that you came to resent your own identity. You felt less than.

Your societal insecurities lead you to become gracious of admiring men whose intent was only to have you in their bed.

Not knowing it was temporary, you felt beautiful, unique, special.

Special until you realized that you were a conquest. A checked box. A fetish.

Because, he had been receiving signals too.

Signals from the media, from society, signals from his father.

His signals told him that you were exotic, obtainable, submissive.

Knowing it was temporary, he felt powerful, entitled, superior.

Replaceable and devoid of value, he put you away with the other trophies. All hollow beauties that unwillingly perpetuated his belief that you were always his property.

Who found who? Who was the match maker? The media? Society? Your parents?

To the girl wondering if he loves you, or if he desires you for the fetish that the world has reduced you to…

Know, you are more than the sum of your parts. You are whole, you are human, and you are you are worthy of love that honors your mind, body, and soul.

It is the world that needs to raise its status. Not you.

I WOULDN’T BE SELECTED

Every mother knows the scenario. Your toddler is in the other room playing, when the room suddenly goes silent. Then, CRASH, tears, and “Mama!” is desperately cried out.

You rush in, assess the situation, and scoop up your little one. And in that moment, you are so relieved that you are there to provide the comfort and cuddles that they were hoping for.

I am forever changed because it has become instinctual. From now on, every call to “Mama” will hit that primal spot in my heart like a bullseye, and call me to action.

Which is why I wouldn’t be selected.

I am incapable of avoiding the visceral response that occurs when I hear a cry for mama. So there is nothing that could convince my soul that when a grown man named George Floyd called out to his mama, it was anything but a desperate cry for help, comfort, and life.

We just passed the one year mark of Covid being declared a pandemic, and my home town is currently bracing for the trial of Derek Chauvin. So far, six fellow Minnesotans have have been chosen to serve as jurors. One of six are women.

So this morning, I can’t help but wonder, is it because mamas are women?