Our Expected but Blessed EA/TEF Journey: A Year Later

Our Expected but Blessed EA/TEF Journey: A Year Later

by | Jan 31, 2019 | Advocacy, Different Dream, Special Needs Parenting

Our Expected but Blessed EA/TEF Journey: A Year Later

Our Expected but Blessed EA/TEF Journey is guest blogger Kristen Horton’s follow up to Our Unexpected but Blessed EA/TEF Journey which she wrote for EA/TEF Awareness Month in 2018. Please welcome Kristen back to Different Dream and read on for a delightful update about the past 12 months in the Horton household.

Our Expected but Blessed EA/TEF Journey: A Year Later

The Final Dilations

Hard to believe that it was a little over a year ago that I wrote my first blog about our EA/TEF journey with my son Christopher. At the time I wrote that post, we had already gone through the repair, NICU stay, 5 dilations, and one day I had to perform CPR on him at 6 weeks old. After January 2018, he had 5 additional dilations for a grand total of 10 dilations in about four months, but has not had any more since April 2018. The most exciting and emotional day since performing CPR on him was hearing the surgeon say “We don’t need to see him except for an office visit in 6 months.”

Starting Daycare

Another exciting time for us was for Christopher to go to daycare! He started around 6 months old and did so great! To this day, he loves to go and play with his friends. I was a wreck but it was one of the best things for him. While we did battle a couple colds, we have been so blessed that he was had relatively good health even while attending daycare with tons of germs!  He turned one year old in September and moved up classes where he runs around, plays, and eats like a champ.

The “Stuckie” and the Esophagram

The only time we ran into an issue was when he graduated to the next daycare classroom because they feed them items from a menu. Unbeknownst to me, the menu had hard cereal for some breakfasts and he got a “stuckie” one Friday, right after a glowing report from the surgeon to taper off his reflux medication. However, multiple after hours calls to the surgeon and an ER visit later, he has to not only stay on reflux medication indefinitely and drink Enfragrow instead of whole milk, but we are currently on a modified diet of pureed/soft foods. This was the first time I felt uneasy since he had his final dilation in April. We did an esophagram to check for a stricture, but he doesn’t have one that requires more surgery at this time. Other than that one incident, this year has been amazing with family and friends and absolutely flown by!

One Final Piece of Advice

I just want to make sure that the parents of EA/TEF and other birth defects know that it gets better!  While it’s so hard to look past the next surgery or next struggle, you will make it through and be even better at loving your child and cherishing life. However, never grow complacent about trusting that gut for when you need to advocate for your child. I believe I did allow myself to get lulled into a false sense of security that Christopher was “all better,” when I needed to continue to be vigilant about his food items and reflux back in October and November. But, you won’t be perfect and can’t beat yourself up over mistakes. Learn from them and continue to be the best parent you can be.

 

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Kristen Horton lives in Georgia with her husband, Nathaniel, son, Christopher and dog, Winston. She received her Bachelor of Science in Electrical Engineering from Clemson University in 2010. During her time at Clemson, she participated in the ROTC program and was commissioned as a Second Lieutenant in 2010. She also has a Master of Science in Electrical Engineering with a concentration in Electromagnetics from the Air Force Institute of Technology in 2012. Her son was born with an EA/TEF birth defect and she has made it her mission to ensure that he receives the best care possible and become as educated on the condition as possible.

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My Special Needs Mom Worries Never End

My Special Needs Mom Worries Never End

by | Jan 28, 2019 | Different Dream, Self-Care and Stress, Special Needs Parenting

My Special Needs Mom Worries Never End

Of course not, you may have thought to yourself after reading the title of this post. My special needs mom worries never end either.

But there’s a difference between your special needs mom worries and mine. You are most likely either raising a child with special needs under the age of 18 or caring for an adult child with special needs. In either case, you deal with a host of legitimate concerns every day.

I, on the other hand, do not. My son was born with a rare condition known as esophageal atresia with tracheoesophageal fistula (EA/TEF). I had plenty to worry about during his first 4 years until a series of surgeries and procedures fixed what ailed him. Many children born with EA/TEF have other physical disabilities or developmental delays. Our son does not. He’s a college graduate with a job, wife, a family, and a farm. Did I mention he was born in 1982, which makes him 36 at the time this post was written? Even so, my special needs mom worries never end. Here’s a frank look at what I worry about.

  1. Esophageal cancer. People with EA/TEF often have recurring issues with gastroesophageal reflux disease (GERD), a condition that can lead to esophageal cancer. I combat this reality by thanking God for the years our son has lived, when in another day and age he would have died at birth.

To read the rest of this post, go to Key Ministry’s blog for special needs parents.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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An Esophageal Atresia Story: Jack’s Journey

An Esophageal Atresia Story: Jack’s Journey

by | Jan 17, 2019 | Different Dream, Encouragement, Special Needs Parenting

An Esophageal Atresia Story: Jack’s Journey

An esophageal atresia story was not when Jen Cheney and her husband Will expected when they learned they would soon be a family of 3. For EA/TEF Awareness Month, 2019 Jen shares about what life has been like for them since the birth of Jack in May of 2018. Hang on for the ride and be prepared to fall in love with their pint-sized son!

I learned of Jack’s diagnosis when I was 32 weeks pregnant. I had severe polyhydramnios and was sent to maternal fetal medicine for an ultrasound. The doctor came in and said there was no stomach detected in the ultrasound which meant my baby most likely had an esophageal atresia–a rare condition where the esophagus does not fully develop and is not connected to the stomach. I had never heard the term and could barely pronounce for several days. Through tears I asked the doctor what had caused it.

He said, “If you have hundreds of thousands of cars being made daily on an assembly line, eventually one of them is going to be defective.”

I couldn’t get the word defective out of my head for weeks. I felt defeated and that it was all my fault. I was already a bad mom and my son wasn’t even born yet.

Jack was born on May 17, 2018, the happiest and most terrifying day of my life. What started out as a routine non-stress test at 36 weeks ended with an emergency C-section. My 4 pound 12 ounce baby boy was fighting for his life. Before he was taken up to the NICU, I got a quick glimpse of him as the doctors sewed me back together. 6 hours later I finally held Jack. A nurse carefully placed him on my lap. I had to be extremely careful not pull on his IVs and replogle–a tube down the throat to suction out secretions since he could not swallow. I couldn’t hug him or hold him close to my chest. I couldn’t feed him. He screamed the entire time. I feared that he didn’t know I was his mom and that was devastating.

Jack had a g-tube placed at 2 days old and finally got real food. The goals written on his wall during his 88 days in the UC Memorial NICU in Colorado Springs were to “rest and grow.” His team did a great job of preparing Jack for surgery. There were a few bumps along the way, but Jack did well. My husband and I spent every day by his side, and the doctors, nurses, and NICU staff felt like a second family. Soon, we felt as though we had moved into our hospital room.

When Jack was big enough for surgery, we transferred his care to Boston Children’s Hospital where they have an entire team dedicated to esophageal atresia patients. His first surgery, the Foker Method, took place on August 16. 11 days and some scary moments of respiratory distress later, Jack’s esophagus had grown enough to be connected! The next several days in recovery were the hardest as my 3-month-old baby went through morphine withdrawal. He was sweating, shaking, irritable, and inconsolable. I would have given anything to switch places with him.

Once Jack had recovered from withdrawal and was healing well, he ate by mouth for the first time ever at 3 and a half months. When he sucked down 10 ml of formula for the first time. I knew Jack was going to be okay and had made it over the biggest hurdles.

After 136 days, 2 hospitals, 1 cross country air ambulance ride, 7 surgeries, and countless pokes, tests, and procedures, Jack came home! He is now 8 months old, has had 1 additional surgery to widen his esophagus, and takes most of his feeds by mouth. Although we have a long road ahead with several more surgeries and challenges, I feel hopeful for the future. I will worry for Jack for the rest of my life, but he is a fighter and will overcome any obstacles.

The best advice I can give families going through this is to celebrate the small victories. Don’t give up hope because our babies are stronger than we will ever know.

 

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Jen Cheney is a wife and stay at home mom to her son, Jack. Jen previously worked as a teacher’s aid in an elementary classroom for students with special needs. Jen, Jack, and her husband, Will, live in Colorado Springs, CO where they enjoy hiking, skiing, and spending time as a family. Jen is inspired by Jack’s strength and hopes to spread awareness of EA/TEF by telling Jack’s story and giving families in similar situations hope.

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Wisdom Shared by EA/TEF Parents: 9 Years of Stories and Strategies

Wisdom Shared by EA/TEF Parents: 9 Years of Stories and Strategies

by | Jan 16, 2019 | Books and Resources, Different Dream, Special Needs Parenting

Wisdom Shared by EA/TEF Parents: 9 Years of Stories and Strategies

Wisdom shared by EA/TEF parents is a cornerstone at Different Dream since 2011 when it first dedicated most of every January to EA/TEF Awareness Month. Each year, moms and dads volunteer to share their stories and strategies to raise awareness and to encourage young parents caring for EA/TEF babies. Today’s post is a round up of several articles from the recent past, along with a reminder of how to easily access all posts from past EA/TEF awareness months. May these stories from families around the country and the world increase your understanding of EA/TEF, inspire you to raise awareness in others, and bring hope to those just beginning to navigate the unexpected and precious world of parenting a child with EA/TEF.

  • Last year, musician and mom Janae Copeland compared raising her daughter with EA/TEF to a bittersweet symphony. She describes the melody that arises from the chaos and the beauty of raising her daughter.
  • Also in 2017, Jill Seaney shared her 4 greatest mom fears as a parent. Her post resonated with readers then, and it will now. Ironically, Jill was planning to write a 2018 post, but her son is in the hospital with one of the respiratory illnesses so common to kids with EA/TEF.
  • A year ago, Kristen Horten’s son was a few months old when she wrote about their family’s unexpected but blessed EA/TEF journey. She’ll be back in a week or 2 with an update about how her little boy is doing, so now is a good time to catch up on his early days.
  • Lori McGahan founded EA/TEF Awareness Month and also the Bridging the Gap Facebook page. She’s contributed updates about her son Brandon in the past, and last year she did it again. Her story about how a kid with EA/TEF finds courage will have you cheering Brandon on from the sidelines.
  • Different Dream founder, Jolene Philo, has been an EA/TEF parent for over 30 years. In 2017, she wrote a post about how treatment for the condition has changed since her son was born and how it’s stayed the same. If you believe history contains lessons not to be forgotten, give it a read.
  • When kids are born with EA/TEF, their parents are faced with a steep learning curve.2 years ago, Nanette Lerner contributed a cheat sheet of warning signs so new parents could be slightly more prepared.
  • In case you want more, this 2015 post about everything you want to know about EA/TEF but are afraid to ask has plenty of links to wet your whistle.
  • Last but not least, you can access all of Different Dream’s EA/TEF Awareness Month posts from the past in a couple ways. First, type EA/TEF in the search bar and see what pops up. Second, find the Archives button in the right sidebar and select any January from 2011 through 2017. Not every January post is about EA/TEF, but you can scroll through and find posts that are.

There you have it–a look at wisdom shared in past years. If you have more wisdom to share, please leave it in the comment box!

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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Something Is Wrong with Your Baby: 5 Things I Wish I’d Known

Something Is Wrong with Your Baby: 5 Things I Wish I’d Known

by | Jan 10, 2019 | Different Dream, Self-Care and Stress, Special Needs Parenting

Something Is Wrong with Your Baby: 5 Things I Wish I’d Known

Something is wrong with your baby. I remember, as though it happened yesterday and not in 1982, the day our doctor sat down beside my hospital bed and uttered those words. Something is wrong with your baby.

I reach through the decades at the young mother and wish I could go back in time and sit beside her. I wish I could tell her what we learned between then and now about raising the baby we both love. I wish I could calm her anxiety with these 5 nuggets of wisdom our baby taught us through the years.

  1. One day you will meet other parents of children with your baby’s rare diagnosis, EA/TEF, and it will be wonderful. Thanks to the internet, which will come into its own when our son is in his 20s, you will meet families who understand the challenges of caring for your baby. They will validate your hunches and applaud your advocacy on behalf of your son.
  2. You are the expert about how your baby’s condition is manifested in your child. Surgeons and pediatricians will know more about the condition your child has. But you know more about your child than the professionals do. Therefore, your expertise is equal to that of the professionals, and you deserve to be heard. When you find a doctor, a therapist, a nurse, or a caregiver who treats you as such, rejoice and make them part of your child’s care team. They are golden.
  3. You must be the keeper of your baby’s medical history. The details of your child’s early medical history will be seared in your memory. Your baby will not remember the details at all, though the experience will be stored in your child’s brain in a different way. You must document the early medical history so your child has it to refer to as an adult.
  4. Reach out and ask for help. People care about what you and your baby are going through. Most of them have not raised a child with special needs and have no idea of how to help. So when they say, “Let us know what we can do,” have some practical suggestions ready for them. Things like picking up your grocery order, bringing a meal, driving you to an appointment, bringing your mail or clean clothes to the hospital, or specific prayer requests. You’ll be surprised how quickly they’ll say yes.
  5. You’ll adjust to your new normal. Your life will never go back to the normal it was before your baby was born. But you will adapt to your new normal more quickly than you think. You will become stronger. You will mature. You will grieve, but you will also rejoice in the gift of each moment with your child. You will one day be able to encourage young parents in similar circumstances who need to know what you wished you had known when the doctor sat beside you and said, “Something is wrong with your baby.” You will discover the beauty of your new normal and be comforted by it.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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God Surprises

God Surprises

by | Dec 26, 2018 | Different Dream, Holidays, Special Needs Parenting

God Surprises

God surprises are on guest blogger Sharon Cargin’s mind this Christmas season. In today’s post she reflects on the God surprises she experienced after the birth of her son, many of which are similar to what Mary experienced.

God Surprises

Silent Night was meant to be sung with an organ like all good hymns in the 1800’s. The Christmas Eve it was to debut, the organ refused to work. My favorite explanation is the church mice ate through the billows. The only option available was to quickly adapt the song to be sung with a guitar. What a surprise for the composers who envisioned an organ but had to settle for a guitar. One of the God surprises that led to a much more beautiful, magical song.

The lyrics of Silent Night tell about a series of God surprises. Who plans the birth of the long-awaited Savior King of the world to a virgin? Who planned for the young, pregnant girl to travel 70 miles when she is about to give birth? Who planned for the baby to be born in a stable with a manager as a cradle? Who announced this marvelous, long-awaited king by angels to smelly, lowly shepherds? A crazy plan, yet it is the perfect plan as we look back on it–a perfect God surprise.

We also had a son born at an unplanned time and place.

My body went into labor 3 months early.
Our third son was not born in our hometown surrounded by family but rather 120 miles away in a bigger hospital.
My travel plan morphed into being transported by a life flight helicopter.
My beautiful, awaited son spent 3 months in a scary plastic box covered with tubes and wires.
We had to wait almost 2 months before we could even hold him.
This baby spent 3 months in a room filled with bizarre noises, bright lights and daily heel pricks to take blood.

The adaptation of Silent Night and our Savior’s birth story were God surprises that became beautiful perfect plans. It was hard to find the beauty in the plan of our son’s birth as over time. He couldn’t do the things a normal baby could, and he was given a diagnosis of quadriplegic cerebral palsy. His life required complete care to do daily tasks and a custom, fitted wheelchair. We have struggled to keep him alive for the last 30 years, and it has been hard to embrace his life as a perfect God surprise. I think that is where faith comes in, where we have to surrender our expectations to a loving, all-wise God. He promises that every detail of the lives of those who love Him will be worked into something good.

Could it be that God can use all of our circumstances that seem so surprising to us maybe even gut-wrenchingly, difficult into His perfect plan?
Are there God surprises for each one of us?
I can tell you with full confidence that my son’s life, even though he is disabled has been and will continue to be used for good.
He brings love and laughter to all he comes in contact with.
Because he has had a life of pain and suffering our son has an innate ability to connect with others who are hurting.

Have you ever had a plan that went so far off schedule you were devastated, confused and wondering what could be worse? Maybe it is time to believe that God does have a perfect plan filled with God surprises for you. Just like in the adaptation of Silent Night, the birth of God’s precious Son, and my own son’s birth and life. Take heart, God is with us!

“Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along.
If we don’t know how or what to pray, it doesn’t matter.
He does our praying in and for us, making prayer out of our wordless sighs, our aching groans.
He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God.
That’s why we can be so sure that every detail in our lives of love for God is worked into something good.”
Romans 8:26-28 (Message Bible)

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Sharon (wearing white shirt above) is a wife, mother, mother-in-law, and grandmother. She has taught elementary school and homeschooled. Teaching and mentoring children and teens has been a joy in her life. Life was fairly normal for Sharon but pretty much blew up at the birth of her third son who was born 3 ½ months premature with quadriplegic cerebral palsy. Sharon has a passion to encourage others and share some of the lessons she has learned over the years.

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