On the Web

Boston Children's Hospital gave us the honor of asking if we would be willing to feature Sloane on their Thriving Blog for the hospital. I was teary-eyed at the idea and welcomed it whole heartedly. It was not easy emotionally to go back and reminisce our journey to the incredible place we are today. When I re-read my blog entries, I was brought back to how challenging many days were to have a child with a birth defect.

Sloane is one month away from 7 tomorrow and the thought makes me tear up each time. Where has the time go? Why can't I just bottle her up and keep her this age? I want more and more of watching her twirl around every day.......

Life is incredibly sweet right now, but we have not forgotten how far we have come......


Here is the link to Sloane's story........

https://thriving.childrenshospital.org/step-step-sloanes-journey-laryngeal-cleft/


Step by step: 

Sloane’s incredible journey with laryngeal cleft

Posted on 04 May 2017 by Jessica Cerretani

 

Posted in Diseases & Conditions, Our Patients’ Stories

 

More On: Center for Airway Disorders, Dr. Reza Rahbar, laryngeal cleft

Like most first graders, Sloane has a jam-packed schedule, filled with fun activities such as dancing, ice skating and playing tennis. But every now and then, this busy girl needs to take a break, even if that simply means taking her time to sip a glass of water. “I remind her that, sometimes, she needs to slow down,” says her mom, Tarra.

Resisting the urge to rush has been a familiar theme for Sloane and her parents ever since she was born — although, ironically, she arrived in a hurry. Tarra had experienced a placental abruption, requiring an emergency C-section. Things only got more complicated. After Tarra had struggled to breastfeed her for days, their Rhode Island hospital finally moved Sloane to the neonatal intensive care unit (NICU) to try to determine why she screamed and started turning blue whenever she tried to nurse.

All told, Sloane spent eight weeks in the NICU, where she was diagnosed with pneumonia and, eventually, a laryngeal cleft. In this birth defect, an abnormal opening develops between the larynx and esophagus. This can cause food and liquid to pass into the lungs, resulting in a number of eating and breathing problems. Sloane’s cleft was almost a Type III — one of the more severe forms of laryngeal cleft.

Finding help

“We had never heard of a laryngeal cleft,” says Tarra. “We were totally green when it came to this, and had trouble finding much positive information about it online.” She and her husband, Alan, knew that their local hospital wasn’t well equipped to care for kids with this rare condition. “We wanted to go where the experts are,” explains Alan. Their search for clinicians skilled in treating laryngeal clefts led them to Boston Children’s Hospital, where they made an appointment with Dr. Reza Rahbar, co-director of the Center for Airway Disorders.

“From the moment we met Dr. Rahbar and his colleagues, I was overcome with a sense of peace, like it would all eventually be okay,” she remembers. “He has a gentle, reassuring manner that helped to calm Sloane — and us as well.”

In March 2011, Sloane underwent surgery to repair her laryngeal cleft. Although the procedure was a success, Dr. Rahbar warned the Ferraras that their daughter might require a follow-up surgery later on. Indeed, Sloane continued to require the feeding tube that had been surgically implanted in her body when she was just six weeks old (it was removed when she was about two.)

A challenging time

But when Sloane failed a swallowing study to assess her health in August 2012, Tarra was devastated. “She had been receiving nutritional and swallowing therapy at the Center, and we had been feeding her with the recommended thickened liquids since she was one year old,” explains Tarra. “Now, I realized that she had been silently aspirating for nearly a year and a half.”

The next two stressful years brought a bout of pneumonia and other challenges that only parents of a chronically ill child can truly understand. At times, it seemed like there was no end in sight as the family traveled back and forth to the hospital, hoping Sloane would improve. After an exploration of Sloane’s airway, Dr. Rahbar recommended the follow-up surgery. That took place in May 2014, making Sloane one of just a handful of children to undergo a second surgical repair. “Whenever I worried that things weren’t progressing, Dr. Rahbar would say, ‘slow and steady, slow and steady,’” says Tarra. “He reminded us that even when it didn’t seem like it, we were always still moving forward.”

A bright future

Today, Sloane is an energetic kid with a contagious smile who shows few signs of her early challenges. “She loves to run and play, but she’s girly and dramatic, too,” says Tarra, who blogs about her family’s experiences with laryngeal cleft in hopes of helping other worried parents. “She’s both as sweet and as sassy as the day is long.”

Sloane recently graduated to annual follow-up visits at Boston Children’s, and a challenge that once seemed insurmountable is now a memory. “Even in our darkest moments, Dr. Rahbar was always a bright spot for our family,” says Tarra. “Just by coming to Boston, we knew we were one step closer to where we wanted to be. Back then, five years seemed so long — but it’s really insignificant in the scheme of things.”

To learn more about laryngeal cleft, visit the Center for Airway Disorders.

Sloane is International!

Across the pond, as they say, there is a mom of a 6 month old little girl, with an isolated level 2 Laryngeal Cleft, who has found solace in our journey!

"A Mom in London" thank you for your comment. Please contact me again and leave your email. I would love to correspond as well as answer any questions you have!

Hi,

I am another mom who is extremely grateful for this blog. My daughter was born six months ago with a long type 2 laryngeal cleft. She also was diagnosed early and has no genetic or developmental issues. Your blog has been one of the only sources of useful information I have been able to find. Your story gives me hope and has also helped prepare me for what may be ahead. We are living in Europe at the moment, but will be seeking treatment from Dr Rahbar. I would love to get in touch via email if you would be interested. Your little girl sounds like a real joy and I am glad she is doing so well. Thank you again!

A Mom in London

Life in Sloane's world is great! We have battled a constant runny nose, ear infections, junky coughs and the stomach flu for a week this past winter but we have made it thru :)

Sloane is back on her inhaler once a day. Mid-February, the junky cough got the best of us. It had permanently resided in Sloane's lungs so our ped suggested starting back on the inhaler. And it worked! Not sure how long we will use it for??? Taking it one week at a time!

It is obvious that Sloane needs her inhaler for airway issues. Whether or not they are related to the cleft isn't as important to me as it used to be......Each month, we inch further and further away from the life altering effects of the LC. Which is almost unbelievable!

What is also unbelievable........that A Sip Of Heaven has had over 15,000 views!!! OMG!!!

Dancing Queens

Anyone who knows me, knows I like structure and a schedule. Some days it is to a fault. Other days, it is what brings music to my heart. I spent all of last week, preparing for "my schedule" on Friday. It was a day I had been waiting for since September. Sloane's 1st Father Daughter Dance! 

Sloane's pre-k is part of a school that goes up to 8th grade. So this, in fact, was a "real school" event. I found the perfect dress, adorned it sparkles, ordered a mini bouquet, and prepped Sloane all week about the dance to come. My hubby was away thru Friday so we had lots of beauty sleep and girly time. 

I decided weeks ago that on the day of the dance, I would pick Sloane up early on Friday and take her home to nap before the dance. My daughter is a child who needs sleep. Right up until she started school in September, she was sleeping 2 hours a day. Since beginning a full day at school, her naps have been only on the weekends. 

I thought that Friday would be a good day to have a power nap. The dance didn't begin until 6pm; only a normal night at 6pm Sloane is rubbing her eyes and spinning out of control. My thought was that the Father Daughter Dance wasn't the place for these behaviors. 

I had planned it all. My day. Her day. Errands. Everything revolved around a 12:30 pick up and a nap! Everything went swimmingly until the moment I arrived at Sloane's school. While waiting for Sloane to skip down to me, the nurse told me that Sloane had stopped by her office complaining that her ear hurt. 

I was surprised. Sloane hadn't said a word to me. As soon as I saw Sloane, I knew. She was cool as a cucumber but her eyes were as glossy as a newly cleaned rink. Sloane told me that her ear had hurt and now it didn't. I sighed some relief and thought a nice nap would be all she needed since it was Friday.  

Once we were home, Sloane literally jumped into bed and I was right behind her!! A nap would serve this newly 42 year old well. I, too, had some dancing to do that night. Both Sloane and I would be dancing the night away. My friends had asked how I wanted to celebrate my birthday. My wish was to dance. I hadnt danced in years...since before Sloane. Dancing hasn't really been at the top of the priority list. My "nap" plan for Friday was going to benefit me too!! Haha

Into bed we both went, but only one of us settled down. The smaller and cuter one was very restless. She tossed and turned for close to 30 mins. I finally said, "mommy, what's the matter?" Sloane bursted out crying with complaints of a hurting ear. There is was!!! Nooooo, I thought. Not today. Of all days!!!! Today is supposed to be a quiet, relaxing day. 

And I called the ped's office to make a sick visit. As my luck would have it, the 
only thing they had open was 5pm!!!! At 5pm in my plan, we were supposed to be getting pretty for the dance. Not sitting in the ped's waiting room.  My plan was out the door.....

Sloane settled down on top on me. My lil lady certainly didn't feel well. I popped some numbing drops in her ear and we waited. I wasn't quite sure what we were waiting for......the doctor's visit, her father's arrival home or the dance.

In my head, I was rationalizing that I was still a good mom even if I went out dancing with my friends while Sloane has an ear infection. After all, there were a bunch of us! Slowly and surely, I began to feel like a crap mother and too old to go dancing. By the time we sat in the waiting room at 5pm, I was completely sober from all my giddiness about the night's festivities. I was a mom of a sick child, not a birthday girl with a purpose.

It was an ear convection....Sloane's term. Haha! No fever in accompaniment luckily. We left with a script for 10 days of antibiotic and some peace of mind 
that the junk in Sloane's lungs would feel the effects of some meds. :)

It was a mad dash to get out the door for the dance. I figured, at the very least, Sloane could take some pictures with her dad and come right home. The numbing drops had taken the edge off and she was acting like the spitfire she is!! I told my hubby to prepare for anything....she may cling to you, be overwhelmed by the whole thing, or become a dancing queen. 

Sloane looked beautiful. She was beaming. I sent them on their way which 
wasn't easy. I wanted to see it all happen......the pictures, the dancing, the fun, her little friends. Our parting words were...send me pictures all night!!

And with peace and quiet in our house, I took a good look at myself and thought....this happy 42 dancing party was an example of something better in theory than practice (one of my favorite sayings....TY Andrea). I wasn't at all prepared to look or be a dancing queen. Sloane bounced back from her ear convection much faster than I did. It appeared I need the nap more than my lil lady. 

I hope for a miracle hot shower! The pictures started rolling in and Sloane wasn't overwhelmed at all. She hit the dance floor with zest and didn't turn back. Sloane was a party girl......dancing with all her friends and the older girls too! Kicked and screamed her way home. 

Once I had my hot shower, I turned on some tunes and got busy fixing up my 42 mommy look. There was a fashion consult.....and then I, too, hit the dance floor with zest and didn't turn back. LOL. We were a bunch of party girls! There 
was no kicking and screaming on the way home....only whining and squealing that our stiletto stuffed toes were aching! 

Sloane, ear convection and all, is more of a dancing queen than I am! 

Thank You Kacie from Texas

The straw that broke the camel's back! Isn't that the saying??? In the world of this blog....the straw was a comment from a mom in Dallas yesterday that I received earlier this week. She has a 15 month old who may have an LC. Her comment was the straw that broke this mom's writer's block! 

Now, a few different people have asked me over the past few months why I hadn't blogged lately. I had no good reason. I truly hadn't realized.... 5 months had passed by. It unclear where to begin. I can simply say life is good, really good. Sloane is 4 1/2 and in full day Pre-K loving life. I can remember wondering day in and day out when Sloane was an infant what life would be like at school time. Our life has far surpassed my ideas.

As for Sloane, she has no clue about her journey. She recalls small bits with questions like why did I have to sleep over at the hospital? What did Dr. Rahbar fix in my throat, can I see it? I am sure as I sternly say: take small sips, slow down, not too fast....Sloane gets the idea. 

We did see Dr. Rahbar in November for a check in. Can you imagine I didn't even blog about that?? It was uneventful. Actually, I think the fabulous doctor was surprised to see us. We were just checking in 6 months post-op. No concerns. We left that visit with a "I'll see you next year unless you have a concern." 

I don't have a concern aside from the occasional thought of should we try the inhaler for the winter?? Sloane does have the wheeze at times and I have thought about that inhaler but it's not enough to push me yet. I am on it....listening to it when we were outside laying low, at ski lessons, or twirling around on the ice rink. I wait for it to come and then judge how long it lasts. Not long enough for me to make the plunge yet. 

After I listen for the wheeze, I tune into the junky wet cough I hear every once in awhile. It's been happening for a month or so. That doesn't sound good, I'm sure but the cough has turned into nothing else.....thank god! So I have let it ride because my ped was away on an extended vaca and I didn't want to see anyone else because Sloane and her lungs are in an intimate relationship with her so I thought...just wait until she comes back.  That'll be next week! 

Life now has less to do with Sloane's cleft and more to do with being a mom of a precocious and spirited 4 1/2 year old! A huge thank you to Kacie for sparking me to recall where we came from and the importance of this blog to those who are just starting their journeys. 

I haven't forgotten the beginning of our journey, I have just tucked it away while I was enjoying this life of not ending under a medical umbrella.

Kacie, I'll email you back later tonight when all is calm and quiet! 

Unbelievable!!

Today was Sloane's first day of pre-k. Monumental, yes!! The fact that four years ago tonight, Sloane was still a patient in the NICU and hadn't made into our home is incredible. For the past 3 years, at this time of the year, I always reflect on the length of time Sloane was hospitalized after birth....from July 20 until September 10th.  Each year, I am reminded just how long that is!

Today was Sloane's first day of full day pre-k. Amazing, yes!! Sloane is going to school. Real school.  We have enrolled her in a school that stretches from pre-k to eighth grade.  There is a uniform to be worn, a cafeteria to be eaten in, a theater stage to preform on, and a library to devour a book in. A real school. An every day 8- 2:30 school!

In classic Sloane form, she held her head high, put her backpack one and said "momma, I am so ready for this!" And she is!! I'd like to say that she is too young for a full day of enrichment and learning, but I would be lieing. She is ready. More ready than I am. It was a very long day without Sloane's company, Sloane's energy, Sloane's curiosity and her chatter!!

Today was Sloane's first day of pre-k. Unbelievable, yes. But not as unbelievable as the fact that Sloane's Laryngeal Cleft didn't play a role, at all, in her entrance physically or emotionally.. That is unbelievable. I didn't believe 4 years ago that Sloane's Laryngeal Cleft would ever be something we didn't focus on or talk about. I couldnt wrap my head around that idea. How could something that altered our lives and made our child different than those around us become unimportant??? But it has. As I filled out Sloane's entrance papers to her new school endlessly, it dawned on me that I didn't have much medical info on Sloane to fill in. Now, of course, I noted Sloane's cleft, her surgeries, and wrote a quick snip-it about her current drinking issues...which was: sometimes when Sloane drinks from an open vessel too quickly she will cough. Beyond that I wrote nothing. Unbelievable!!

Sloane's LC, four years ago was THE ONLY thing we talked about, read about, and wondered about. We wondered.....would Sloane enter school with a feeding tube attached to her because her Laryngeal Cleft would be present in her life. And here we are,  today, the first day of. pre-k wondering about everything that has to do with Sloane......watching her enter school with a sports water bottle hanging off her backpack!!! Unbelievable, for sure!

To the Laryngeal Cleft Mom

I had all intentions of blogging this week about the BIG 4!! and how we spent our day on Sunday but that has been put on the back burner for today at least....

There is a mom out there who left me a very nice comment last night on a post that I wrote way back in February of 2012 entitled Are We There Yet?. She didn't leave her name or her email which is fine. But this post is for her....

To this LC mom: I know you.

 I remember the days after cleft repair surgery and how slow the progress was...hanging on from swallow study to swallow study from month to month.
 I remember when Sloane was 21 months very well. She still had a feeding tube attached to her daily, she was still aspirating liquids, we were in the throws of it and I felt our journey would never end.

For us, 21 months was April 2012. I could go back and re-read posts about our Laryngeal Cleft world then but I don't have to. I remember it all. I can say that back in April 2012...I never thought we would be where we are today. I had visions of the feeding tube entering into a Pre-K classroom, I had visions of weekly swallowing therapies, I had visions of Sloane having sensory issues attached to foods, I had visions of never being relaxed when liquids were handed out, I had visions of croup and pneumonia dancing in my head. I had visions of there never being normal in our home.......

All of that has gone away.....your life, too, will change and progress and little by little or sip by sip things get better. That I can tell you from my heart. Two years later at 4 years old, things are better, more normal and I can see a light.

As a mother of a child with a life altering birth defect no matter how small or how encompassing......it is true, we are different. Thank you for sharing your thoughts and embracing mine. It is true, we are not our friends, or our mothers, or the girl next door. We are different. That will never change.

Thank you for your comment...for reaching out.....for sharing in our journey and sharing yours......be in touch again please!

First I'll Be 4, and Then I'll Be 5

There is a whole lot of static going on around me that Sloane is turning 4! First off, let me say that I can not believe she is 4. I sound like every other mom in the whole world when I say...where did the time go??? It is astonishing how quickly infants turn into babies and babies turn into toddlers and toddlers turn into preschoolers!

Driving in the car last week.....Sloane told me after 4 she will turn 5 and then she won't need  mommy anymore!! My heart tore, it broke and a wave of sadness came over me. I explained that she will always need a mommy and then, in her ever so sassy way, she said...well, you don't have a mommy! And then the conversation took a whole another turn.

The static buzzing around me is because yes, in fact, at 4 Sloane is on her way into life without me and I am, unconsciously, having a hard time. My hubby keeps reminding me that the life I knew as a mom is going to change as Sloane enters full day pre-k.

I think being a mom is a full time job for every one of us. Unless you are presently one, I do not think you understand how non-stop it is in all aspects of life. But our world...it was a bit more....

A motherless first time mom blessed with a child with a medical need can cause tighter bonds...to say the least.

I am reeling with the wonderful positive changes in our family...Sloane's laryngeal cleft issues have for sure taken a back seat to normal 4 year old problems (like the deer tick I removed from her belly yesterday), our lives are no longer hanging on the next steps (we have done all we can for Sloane's laryngeal cleft to this point), I am not gearing up for weekly or monthly check-ins with any medical professionals, and when Sloane takes a gulp of water.....I don't hold my breath while she gasps for hers. Life is good!

But I am feeling a bit off-kilter....my whole life revolved around Sloane and her laryngeal cleft (good, bad, healthy or unhealthy) and now I will have more of a normal mom balance in my personal world which is throwing me for a loop.

The static has been outright directed and clear like: What will Supermom wife do now?? and then I know there have been some subtle whispers behind my back. I know that my feelings don't have everything to do with a job or time. Its more the big picture of the changes to come...the lack of complete control, the little buds of wings that Sloane has started to grow, and the fact that she is growing up physically and emotionally.

So come Sunday....at 1:57am....Sloane will be 4! Four years ago, I had no clue how motherhood would shape me, fulfill me and bring me life. I had no idea that I would turn into a helicopter mom. I had no forethought that years would flash by and I would have empty day-time nest syndrome by the time Sloane was 4.

There is an almost 4 year old in our squealing with delight over her approaching birthday.
There is an almost 42 year old mom aching inside because her baby is turning 4.
And there is an almost 39 year old dad managing us both........