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........

A Trade Off

How could almost one month gone by since I've written a post?? Does that mean it has all been good news on our end? Or have we been so busy that I haven't had time to update our Laryngeal Cleft world? I would say both. I have been on the blog....checking out our stats and the current viewings. It is always nice to see how many of our readers are from over seas. Just this month, we have gained a large popularity in Singapore and Australia. Pretty impressive. It makes wonder about all the parents in the world trying to navigate their Laryngeal Cleft journey. My only help is that A Sip Of Heaven is helping them on some level. 

Sloane is doing well; creeping up on 4 years old in less than a month. She is off her inhaler and aside from an occasional wheeze here and there, I do not see any major issues. If any respiratory issues arise sooner than later, we will revisit the need for her inhaler. As for now, the plan is to keep her off of it until winter.  

One very nice thing is that her facial skin is once again on its way to looking like porcelain. I don't think I ever posted about the effects of the inhaler on her cheeks, chin and bridge of her nose. Not sure if it was a coincidence or not, but once we started using the inhaler, she broke out with a bumpy appearance in those areas. Steroid acne?? Maybe? 3 appointments with a dermatologist over the course of 6 months and 3 creams later, not much of an improvement. But one week off the inhaler and a noticeable difference. 

Now on to the most important news.......Do I dare say that I think Sloane is coughing less when drinking liquids continuously? I think so! She has the occasional cough. It's frequency is much less than it was before surgery. My thought is that her lungs are clearer, less junky, and becoming free of aspirations. Does that mean that surgery was successful....I would say so!! It is almost scary to say it. I believe it because I notice a difference, but the fear is that I could be wearing rose colored glasses when I make that statement. 

The fact is that I am the only one who can make that statement. I am the only one who watches her drink day in and day out. Of course, my hubby could interject his opinion but it is me who knows the drill. So very quietly I say it, if someone asks. In a tiny voice I say, " I think she is coughing less." I'm afraid to scream it from the rooftops in fear that I am wrong.

I trust myself to think that Sloane is coughing less because we know both stitches were intact post surgery, we know that Dr. Rahbar is a specialist like no other in our eyes, and we know the odds of Sloane needing a third surgery to close her cleft tighter were minimal. 

If there is one thing I know for sure without a doubt.....it is that Sloane is a nosier breather just as predicted because her airway is more narrow. The tiniest trade-off for healthy lungs! 

Two, 2 and 1,2

There are 2! 2 were seen! 2 remain! 2 intact stitches were viewed by Dr. Rahbar in Sloane's airway yesterday!!! Exactly what we wanted.....2!

Sloane is 3 weeks post-op and Tuesday was the day for our airway scope with Dr. Rahbar. I will save everyone the details and just simply say....it did not go well at all. The results could not have been more wonderful. Two stitches STILL intact and healing just the way Dr. Rahbar wanted. A huge sigh of relief could be heard throughout the room and actually across the country as my hubby was down south. Ha!

The scope itself was horrible. I am pretty sure that is the word mammie used to describe it to poppie. It was either horrible or terrible. Either way, quite accurate. Sloane was beyond upset, physically aggressive to protect her orifices from him entering them and inconsolable to the point that Dr. Rahbar left the room for her to calm down in between attempts to scope her.

It was the 2nd attempt with 4 adults holding her down that got the job done. Pretty terrible, pretty horrible. Everyone in the room felt badly when all was said and done. There was no choice. We needed to know.....how had her recovery gone, what kind of healing was happening, and were there 2???

And there are 2! Here is where we stand:

Sloane will not see Dr. Rahbar for 6 months to check-in, follow-up, re-group. His words were clear....carry on as we have...not a problem as I THINK Sloane is coughing less when taking in large gulps of liquids. :)  He also wanted us to remember this isn't just a cleft issue anymore...it is also an airway issue. We understand as her airway was made tighter. And yes, I do think at times that she is noisier than she had been...usually when she is winded.

We will discontinue her inhaler in a few weeks after her swelling dissipates and any residual secretions have had time to work themselves out. We may bring it back out into rotation for next winter. I'm sure we will discuss at our 6 month check-up.

Sloane collapsed on the ride home which hasn't happened in over a year. She was drained. There was a trip to Toys R Us for a prize ($9.00 baby stroller) and the old faithful cup of watermelon Del's.

One of my dearest friends today said to me...I am so glad this is behind you now. You can enjoy your summer without worrying about any of this.....And that is the truth. I am very relieved our 2nd cleft repair is behind us and looking forward to going back to normal life without an impending surgery looming around us....

Tomorrow is Sloane's last day of her first year of preschool.........OMG!!

One Week Down

One week after our arrival home from Children's from cleft surgery #2, Sloane went to school today. I was on the fence until I was putting her in time out and she said "Momma, I don't think you should do that. Can't hurt my throat." I can not make this shit up!!! It actually rolls out of her mouth!! Many days, my hubby and I shake our heads. We know we are in for it in years to come. Once she said those words to me, I realized it was time for her to go to school and resume our normal schedule.

Dr. Rahbar had requested a week of recuperation and we had in fact accomplished that. We had no major restrictions on Sloane's diet or liquid intake so all is going swimmingly in that area. He had asked us to limit the water she drank for the first few days....simply because it is the thinnest liquid and therefore the hardest to swallow for her newly lasered and stitched throat! The thinner the liquid, the more troublesome to the swallow of a laryngeal cleft child.  
It has not been easy to keep Sloane's activity level or voice on the low side! She is naturally a live wire ready to go! and a loud talker like her momma!! I wish this wasn't the case, but 2 girls in this house are louder than most.  I asked her teachers today for quieter play at recess.....and I found out that the sandbox was her choice! Perfect!! Sloane was excited to see her friends and they gave her the warmest welcome!

Many people have been anxious to know, what know.....what happens now that the surgery is done. As far as I know, 2 things are happening.

• The first being that Sloane will stay on her inhaler for the next month to help with any residual swelling or secretions in her lungs. We will make an appt. with our pulmonologist for mid-June to discuss the plan moving forward.

• We are having our follow-up scope on Tuesday, May 27th. Dr. Rahbar is going to take a look into Sloane's airway to check out his work. I am sure at that appointment we will talk about next steps for Sloane.

Beyond those 2 things, I am unsure what approach we are taking. Will there be a MBS (swallow study) to access the results of our 2nd surgery OR will Dr. Rahbar see us in 6 months to hear my day to day mother opinion Or do I dare to think (please let this not even be an option...I am feeling as though putting Sloane under 8 times in less than 4 years is enough for her little body) that he will want to scope Sloane under anesthesia again in months or a year to see what her cleft looks like?????

I am very happy to be back to normal life as the momma. The washing machine is turning, chicken is marinating, the vacuum got some use and the anxiety in the house is at a lull!!

One Eye Open

Sleeping in a hospital isn't sleeping. It is a sequence of closing your eyes and opening them when beeps occurs, when a nurse is jostles you, and when true silence is heard. Sloane and I made it through the first night after surgery with no alarming events. I was brought right back to our NICU nights with the sounds of the beeps around us and the heart-breaking sights.

One part of the anticipation of Sloane's surgery was rooted in our hospital stay. The visions at Children's can be heart-breaking. Walking around the ICU hurt. There were families like us, in the past, who were living there for months. Patients' rooms were decorated like bedrooms from home and the family room looked like a kitchen you would see in a dorm room. Food labeled with each person's name. I thought of the NICU...our 7+ weeks of life. We were these families except our child was an infant. No words were needed to explain the whys of where we were. These families had children. Children the age of Sloane give or take a year and they there living in a hospital with their sick child. I could not imagine the conversations between parent and child. Heart-breaking. Our 24 hours in the ICU left us with a sick feeling down to our cores.

My aunt, ti-ti, summed it up best......"Anyone who thinks they have problems, needs to spend an hour here. Then they will see what real problems are." Aint that the truth!! Every time we go to Children's, I am left feeling like....can I please go home with my child and her cleft and never come back here again. In our home, Sloane's cleft was and can be at times life altering. But in the world of illness, disorders, birth defects, and any health concern.....one hour at Children's shows us that Sloane's cleft is manageable in comparison to what some children and their parents face.  

Once we opened our eyes officially on Tuesday, Sloane was better.... but standing firm in her refusal to take orally meds. She had fought them off thru Monday night. I didn't think she would be so strong in her convictions in the hospital in front of the doctors and nurses. Luckily we plopped or pushed in some Tylenol suppositories while she was out like a light! haha!!! We were moved to a regular floor and battled through the next few hours of Sloane being not her joyful self. When asked, she said she had no ouchies, but her affect begged to differ.

Come Tuesday night, we unplugged her IVs and took a walk. Sloane couldn't believe it!! She was up and out of her bed. We saw a nurse that had Sloane 3 years ago at her first cleft repair. I remembered her vividly because she encouraged us strongly to let Sloane (9 months) sit in her stroller late at night next to her while she charted so my hubby and I could go to dinner. When I was reminding her of the story, I couldn't actually believe I did that back then. But I had.

We spent most of Tuesday night after mammie, ti-ti, auntie ronda, and Jamie's visits and a balloon delivery from cuzzy......walking. All Sloane wanted to do was walk around now that she knew she could. We walked and we walked. It was nice to Sloane to get some movement. Long after dinner, my hubby headed out and his 2 girls nestled into bed together again and slept. Sloane with 2 eyes shut and me with one eye open!

We got 80% clearance to come home at 4:37am...yes, 4:37am. That's when Dr. Rahbar's staff came in to see Sloane. I couldn't believe that at 4:37am we were in a full discussion about Sloane's progress!! But we were! The doctors had 2 eyes open!!

Wednesday am was LONG........the waiting game! We waited for the A-OK from Dr. Rahbar to come home and then waited into early afternoon to be discharged. While we waited for our car, Sloane said: I can't wait to go home. It's going to be a new day!!!! I had to laugh!!

Once home, Sloane was so excited to see her things and play...play with no running, no jumping, no yelling, no crying, no rough play.....

Laryngeal Cleft Surgery #2

No yelling. No running. No jumping. No crying. No coughing. No rough play. Those were Dr. Rahbar's restrictions when he met with us after surgery. Had he met my child? That'll be easy, since I have the most spirited 3 year old in the neighborhood!!!! hahaha So we have prison rules this week here at 1029 (the nickname for our house).

Sloane's surgery went as well as we expected. Ill do a breakdown and  back -tracking to get all my followers up to speed.

Monday:
Thankfully, Sloane had eaten like a truck driver on Sunday night so she didn't ask for any food or drink until 9:30am. I explain that Dr. Rahbar didn't want us to eat and that we could only drink apple juice or water. She took it but not without a sass comment and huff about the fact that her nail polish had to come off too and now she couldn't eat. To say the level of stress was high through the am would be accurate. Our phones were buzzing with texts of good luck wishes and love constantly. Sloane's big day had entered into the hearts and minds of those around us.

We loaded the car and we were off. There was only one quick stop to grab mammie and say hi to poppie. Let me just say...thank you above for the dvd player in my truck. It has helped make the ride to Children's much more enjoyable all around!! Sloane watched a movie and we all chatted about misc things on the way up. Noone touched the days events with a 10 foot pole. Once we got to surgical intake area, it was clear that Dr. Rahbar was behind and our 1:15 start time was going to change. As time ticked, Sloane got a bit more quiet and inquisitive. And I questioned again why we were doing this.....oh yes, it is because Sloane still has constant unnecessary secretions in her lungs from aspirations and her lungs aren't able to function at 100%.

Right around 1:00, a familiar face walked in. Jane, the pre-op nurse. It is a bit sick and twisted that we know the pre-op nurses and they know us. That tells me we have had one too many surgical procedures and scopes at Children's. It was so nice to see Jane's face though. A bit of calm came over me. She escorted us into the pre-op area and more and more familiar faces popped up. Comforting on one hand and ridiculous on the other.

Sloane was quiet as time was ticking. She was getting nervous after her johnny was on; asking me: are we done yet?, can we go see mammie now, i saw Dr. Rahbar? momma, can i go give mammie a hug? I kept thinking....my poor child, we haven't even started yet. It was a longer wait than I would have liked and in the past, we have given Sloane walking around privileges while she waits. But on Monday, I knew the parent waiting area had one mammie, one poppie, one nonni and one Shu who were all emotional themselves about the next few hours. So a quick lap around the halls to say hello was out of the question for everyone involved. I was holding on by a blink.

The anesthesiologist came over to chat and yes, we knew each other too. She suggested giving Sloane something orally to sedate her a bit before I did my mask holding duties, but Sloane wasn't having it. It didn't turn Jerry Springer, but Sloane made sure everyone in the OR knew she wasn't into medicine at all! I put on my OR clothes....and off we walked. Sloane was so brave. She walked herself right into the OR, sat in my lap and stayed calm. We played a "can you guess what flavor you are smelling as I held the mask" and after a few minutes, I placed my sleeping child down on the gurney and made my exit. Not before I had my moment with Dr. Rahbar. He looked at me and I looked in his eyes begging him to take care of my baby.

And the wait began.....I made the mistake of saying that I wanted a water. Well, that opened the food conversation. I would have just assumed ate a bag of almonds Au Bon Pain downstairs but Sloane's people wanted more. More like, lets walk to Bertuccis one block away. I was silenced by the thought and out numbered. We had 2 hours so why not...I heard. I decided to keep the peace and go. Mentally, I was sitting in the family waiting area. I am pretty sure Sloane's people put me on the inside of the booth so I wouldn't run. I was trapped in my sit. As soon as I swallowed my last bite in 10 seconds flat, I announced that I was heading back to the hospital. And after a moment all of them decided to join me.

As I knew it would happen, my phone rang. Dr. Rahbar was looking for me. We all power walked back to the 3rd floor and there he was with photos in hand. All I really heard was "Sloane is fine. All went well. She is in ICU." What he did say was that:
he lasered the area,
he put in 2 stitches to close up an opening the size of a tip of a pen,
he would scope her in 2-3 weeks to check the healing,
he wondered if she popped a stitch after her last repair based on what he saw,
he suggested softer foods and a limit on liquids as it is the hardest to swallow,
he thinks she may be noisier in her airway now,
AND he wanted no yelling, no crying, no coughing, no running, no jumping and no rough play.
The moment he walked away....Sloane's people stopped holding it together and let the day's emotions all go.

There was a mad dash up 4 floors to ICU. Sloane wasn't going to the recovery room. She would recover in ICU. A few minutes later, the big game started. My hubby and I walked around the corner and I heard her. Sloane was wailing uncontrollably and I wasn't holding her. WTF!!!! I rushed in and took my baby from the nurse's arms. She was inconsolable and I was heart broken. We were sitting in the chair like the days in the NICU. Sloane had a hard time coming out of anesthesia. Harder than they like so in walked the critical care doctors to access. Super duper!! Within a few hours, she was settled down and he hunkered down into our new home for the night. Dinner was a Popsicle, dessert was another Popsicle and the late night treat was a Popsicle. Plenty of time spent with her people and  even some tv shows. Well beyond night night time, my hubby left for the hotel and climbed into Sloane's bed. The closer I was to her, the more acceptable the day felt.

To be continued....................

Getting Down to Basics

Getting down to basics. One would think that I would have posted a little fact sheet 3 years ago when I started this blog??? But apparently I had too much other personal experience chitter chatter to share about Sloane's journey. LOL!! 

 

 

 

Let's talk Laryngeal Cleft facts:

 

 

What is laryngeal cleft?
Laryngeal cleft (fissure of the larynx) is a rare abnormality of the separation between the larynx, or voice box, and the esophagus. It appears 1 in every 10,000 to 20,000 births. It is more frequent in male births with a 5:3 ratio.

When the larynx develops normally it is completely separate from the esophagus, so swallowed foods go directly into the stomach.


 A laryngeal cleft creates an opening/gap between the larynx and the esophagus so food and liquid can pass through the larynx into the airway and then lungs. Laryngeal cleft causes swallowing problems. Coughing, gagging, frequent respiratory infections, and chronic lung disease are also symptoms of the disorder.



.

The 4 Laryngeal Cleft Levels
Sloane's cleft was a level 2 almost a level 3.
Requiring not one, but 2 surgeries over time to close it fully.
Surgery one in March 2011 at 9 months of age.
Surgery two in May 2014 at 3 years 10 months.




 


Surgical Pictures from a cleft repair
Sloane's cleft surgeries have resembled these photos. Her surgeon
lasers the tissue surrounding the cleft and then sutures up the area with dissolvable
stitches. Her 2nd surgery on May 5, 2014 required 2 stitches closing up an area
the size of a tip of a pen. Her first surgery in March 2011 required 3-4 stitches.





 



 



It Is A Big Deal

Pre-op was done on Thursday. Check that box! Nothing eventful occurred. Pre-op is always the same. I think we could do it ourselves if they let us.

I found it very funny that the anesthesiologist asked me how I felt about holding the mask over Sloane face to put her to sleep?? Really!?! I thought?? Did you just ask me that??? What I wanted to say in all my North Providence sarcasm was.......I love it. Actually it has been my favorite part of parenting. Watching my child scream and cry while I can do nothing to help her and have to remain composed is very fun. It is as much fun as I had going out with my girlfriends Friday night for drinks!!! SERIOUSLY!!!! I didn't say that no-one panic! I took the high road and said "Well, I have done it before. Its fine. I am her mom. Its my job." I truly think Mammie was proud of my answer :) as she sat beside me. She knows I am not exactly in my best inner self this week and may have said some things that weren't exactly appropriate! LOL

The anesthesiologist did redeem herself when she spoke these words while we discussed Monday's events...."this surgery is a big deal. airway surgeries are a big deal." WHHHAAATTTT?????? I couldn't believe it. Did she just say that???? I looked her in the eyes and said "you have no idea how big this is. Thank you for saying that." Once again, I made Mammie proud. I kept my mouth shut, didn't rattle off my laryngeal cleft journey business and left our appointment with an inner smile. Yes, this is a big deal! This is the biggest deal in my life. This is my child.

I did wonder if the location of Sloane's surgery was adding to my overall concern? Would I be as worked up if it was something more mainstream like tubes in the ears, tonsils, hernia, or a broken limb??? I don't know. I do think the airway, throat, vocal cords, trachea thing steps it up a notch for me.   We talked at pre-op about the option that may Sloane come out of surgery intubated. Not ideal, but I understand why this may be an option tomorrow. The area may be swollen from the laser, stitches, shear manipulation of it AND we are closing Sloane's cleft tighter hence making a portion of her airway more narrow. I have seen Sloane intubated before, at 22 days old, after her g-tube surgery. It is not tops on my lists of memories, but it does need to happen. We are prepared. If she has to be intubated, she will be heavily sedated so she wont know. Thank you very much!!

Surgery is scheduled for 1:15 on tomorrow. Not the best time seeing as though Sloane can't eat after midnight but also not the worst either. In the scheme of things, the type of surgery Sloane is having is not nearly as extensive as the surgeries that will happen on Monday in Children's ORs so we understand that our daughter's surgery doesn't take precedence over some others. We will begin our day around 10:30 when we start the ride to Children's. Once there, we know it'll been a mix between hurry up and wait and a whirlwind of events.  Surgical check-in is always interesting. Sometimes, I cant believe that I have done check in for a procedure that requires anesthesia 8 times on my almost 4 year old!! It can be surreal. Sloane will be under from start to finish about three or so hours....One thing I know for sure is that it'll be a very quiet 3 hours in the family waiting area for us. 

I have all the faith in Dr. Rahbar and his team. He has performed this surgery about 200 times and Sloane will be his 4th or 5th child who has needed a 2nd surgery. This isn't his first rodeo!! Although tomorrow, we will have a moment when I will lock eyes with him in the OR while holding Sloane and beg him to take the best possible care of my child that he is humanly able to do. We knew that tomorrow's 2nd cleft repair was a possibility right back in March of 2011 after her 1st repair. Dr. Rahbar told us when he came out of the OR after closing it up.  I didn't hear him say it...ha....but I know for a fact that he did. It has been confirmed by multiple sources. :)

The packing will begin later. I've managed to re-organize my house 100 times, written a bunch of to-do lists and done all the laundry I could so it is time to crack out the over-night bags. I told Sloane that we are having a sleepover at Dr. Rahbars tonight at dinner and she said ..."well, let me go pack." And she did.


We have 2 pairs of pjs, 3 pairs of undies, socks, a pretend flat iron and curling iron, beaded necklaces,
a baseball hat, a hand mirror, a singing star, a few furry friends and the ever dependable lovey!
Not a bad packing job at all!!!

We have not told Sloane anything else yet. It'll be a discussion in the morning. Not sure what approach we will take as the kick-off to "the talk" but I am sure the game plan for the next few days will roll out just fine.  I think I am most concerned about denying Sloane food all morning at this point. Once we are at the hospital, new concerns will come to the forefront. I have some new Doc McStuffins and Sofia the First pjs waiting for our over-nights! And a few new treats...not that Sloane needs a thing. She needs not for another toy!!!

The outpouring of care, concern, prayers, and love today has been very sweet. I received lots of phone calls, texts and emails from our closest friends and even more from people we didn't know knew tomorrow was so monumental to us. Very touching. The sentiments are all the same....everything will be fine! And we know if our hearts that it will be but that doesn't make it an easier as parents. Sloane's journey has been lived and breathed for roughly over 1200 days in our home, in our hearts, in our lives. Tomorrow is in fact a big deal...

It's a Bird, It's a Plane....It's a Lion!!

There is still a lion around and I am looking for a lamb! This household is very tired of the damp, chilly, rainy, cloudy, raw March weather that we are having in the end of April! It made me sad that Saturday was such a wash-out....we weren't able to participate in the March for Babies walk which supports the March of Dimes. Team Sloane had a contingent of familiar and new faces registered to walk...we were excited! But the weather on Saturday am invited anything but outdoor activities. It was weather fit for a duck or rather a lion!!

We were able to raise over $1500.00 once again for the March of Dimes! I am not at all blind to the fact that it is because of Sloane's story and the love of those around her that we are able to contribute to March of Dimes the way that we do each year! We are so appreciative of our family and friend's donations.

I just put Sloane down for a nap and I couldn't help wondering what we will be doing next Monday at this exact time. Will I be resting with Sloane in recovery or will she still be in surgery? We will not find out the time until Friday afternoon. To say that I am all consumed/self-absorbed and in complete defense mode (all descriptions that I do not like to carry) about cleft surgery #2 on Monday is the freaking understatement of the year! I don't feel as embarrassed as I did when a professional told me  today that this is all to be expected and its post traumatic.....Monday's upcoming surgery has triggered some emotions, from almost 4 years ago, fit for a lion!! 

I decided it would be best to keep myself busy...or try to keep myself busy for the next few days! I found over the past few days that downtime isn't exactly what I need. This lioness used quite a bit of Kleenex when all was still and silent. 

One thing I decided to do was organize the pictures from our trip. I miss developing film and having pictures in hand. All this technology has made me lazy. I would never leave a roll of film laying around...yet, I leave pics and movies on my cell and my PC without a thought. So this week, I am going to try to organize our Turks and Caicos pictures so we actually have something to show Sloane! I have all the photo albums my mom made of events when we (Chunka and I) were young and there is something very sweet about looking through them. I would like to give Sloane the same in spite of the technological world we leave in now!!! Here is a teaser for one of my dearest followers who has been asking me for some pictures of our Caribbean dancing queen!

Ain't no ocean big enough!!

Twinkle Toes!

Nothing like a pair of yellow shoes to bring out some sass!!

The first umbrella drink.....if she is anything like her momma, there are many more to come!!

As you can see....a tan was not an option, as far as I was concerned, for Sloane!!

Double Duty

Sloane, like most 3+year olds, has her moments that make you cringe and bring out the not so great parenting approaches! There are 2 of those moments that you can count on to be ugly....the first one is when Sloane is overtired and the second one is when Sloane has to take medication.

This past week we have battled with getting the Amoxicillin into Sloane twice a day. It is a battle of wits, compromise, bribery, negotiations, threats and at times physical. Sloane can be and usually is violent when she has to take medication. To say it is exhausting is an under statement. A power struggle at its best!

It is no secret that when Sloane is sick, I am not myself. I am on edge and distracted by the illness at hand. The "its time to take your meds" event make it even worse. We have been given advice by other parents, professional doctors and researched the cyber world....but the no matter what approach we take, it doesn't matter med time in our home is a Jerry Springer moment.

This week, I am stuck between the med episodes, the prep for The March for Babies walk on Saturday and Sloane's surgery. I am not myself at all. I am trying hard to balance it all in my head but all 3 are emotional experiences that take me off my game and make me anxious.

I can't say I hate the Amoxicillin as much as I have in the past. I notice that Sloane is coughing more this week and her cough is MUCH looser, MUCH juicier, MUCH noisier. I think the Amoxicillin may be working double duty. Clearing up the ear infection and breaking up some secretions from her aspirations that have been hanging out in Sloane's lungs.

I am sure that Sloane's inhaler has kept the secretions quiet all winter, but we all know that they are there! This little 7 day round of Amoxicillin may have just given them a little wake-up call....up and at 'em.....out you go....don't let the door hit you on the way out....HA!

We are looking forward to the March For Babies on Saturday! A very special day for us. In years past, we have seen some familiar faces for our NICU stay which is very nice! To think that almost 4 years has gone by since we started this journey is remarkable! I was just telling a friend yesterday that 4 years is a long time! I am thankful for how far we have come....I used to worry that Sloane would be in preschool with a feeding tube! But I am also in reflection that we are still on our journey 4 years later. Some days, I cant believe it.

This week, a few people have said to me.....will this be Sloane's last surgery??? And the answer is: We hope so!

Fun Had By All

First, let me apologize for the technical difficulties we are having here at A Sip Of Heaven! Friday am only half of my post about our vacation was sent out in the blog blast to my loyal followers and then Saturday am, a very old post from September was re-sent! My only excuse for this is that I have been blogging from the iPad lately and there are some very small fingers using it when I am not....fingers that end up touching pages they shouldn't!!! 

So here it goes again.......

I would call it a complete success! Sloane's first vacation gets a 12 on a scale of 1 -10. From the easy peasy departure flight to the long winded US Customs security mad dash home. We certainly made wonderful family memories. 

I am sure some of the passengers on our flights thought we were nuts when we Clorox wiped Sloane's entire seating area and sprayed a bit of Lysol for good measure! Thankfully, The Today Show had just aired a feature on flight travel secrets.....warning passengers that nothing on a plane is cleaned in any way in between flights or at any time. YUCK! Sloane settled into our flight without a concern. She was in awe! In fact, I was concerned that she may be interested in flying a bit more than her father was willing to pay for!!! We arrived in Turks and watching Sloane walked off the plane into the Carribbean air and tropical air was so fun!!! I even took a picture to text back home when..... there clearly were signs stating NO CELL PHONES allowed! The not so friendly police officer didn't exactly share my excitement over seeing my daughter for the first time on a tarmac. 

Once we arrived at Beaches, it was vacation, vacation, vacation!! There were water slides and more water slides! Ice cream for lunch! Sand castles built for princesses. Swimming that made the tips of fingers wrinkled. Photo opportunities with characters larger than life. And smiling that made your cheeks ache. 

Turks and Caicos is an island that is near and dear to me and my hubby. We both had visited it in the past separately and together. It is one of those places for us that we dream about moving to. The days when we say....forget the easy continental USA/let's move to a different place.....it's the let's go big or go home move!! One of the reasons that we picked Turks as our family vaca location! 

Our days were the same....Sloane woke up rearing to go and didn't stop water sliding, lazy rivering, splash pooling it, or floating until she collapsed after lunch, she powered napped in the afternoon and then we beached it until dinner! She filled in the gaps with tropical drinks topped with umbrellas and high fives with Elmo! There was a night time parade that brought tears to my eyes! And breakfast with all the Sesame Street characters was a blast! Tea time with Abby and Elmo was a family event :) Sloane got some island braids and a purple sparkly tattoo! It was a 12 on the scale of 1 - 10!

Did we worry about Sloane's surgery? No. Did we worry about Sloane's cleft? No. Did we wash Sloane's had a hundred million times??? Yes. I happen to think that planes are disgusting and load up on echinacea before I get on one to help ward off any unnecessary germs. My hubby travels weekly so I do know what a trip on the plane can bring home! I did think about Sloane's exposure to jetliner germs and it's timing in regards to surgery. But knowing we had 3 + weeks in between the 2 monumental events felt safe.

My thoughts weren't frivolous. Thursday night from 11pm to 9am, Sloane cried all night, complaining of a sore throat. She had had a runny nose all week so I thought....post nasal drip drying her out or strep throat! We made it thru the night without sleep and waited 
eagerly for 8am to grace Dr. Reibman without presence. It cracked me up a bit really....Sloane always seems to get sick at the most in opportune times. I was hosting a double birthday lunch and some egg coloring for the girlies in my family on Friday. My fabulous niece turned 3 on Friday and Titi turned a new double digit on Monday. We were having a girls day and then Sloane was scheduled for some 2nd shift egg coloring at nonni's. All events canceled by 7am on Friday am! 

While waiting for our drs. appointment, I contacted my go-to mommy with our sudden illness onset. She alerts me that it could be Sloane's ear?? This is surprising as we have never had an ear infection in our home. Apparently, unbeknownst to me, the throat and the ears and the pain can all get mixed up in a child's thoughts.  And sure enough, as my go-to mommy knows, Sloane had an ear infection. My poor love bugs ear had a lovely pool of orange goop sitting at the bottom of it when I finally looked!! Our visit with Dr. Reibman is always eventful. Sloane was asking in he middle of the night to see her if that gives you any idea how I comfy she is so she was quite happy to be sitting in the sailboat room awaiting her arrival. Sloane was clear to tell the doc exactly how she wanted her to touch, or rather not touch her hurting ear. Dr. Reibman just laughs and looks at me with a " oh dear...she is a bit of something" glance each time we spend time with her. 

We came home with a round of antibiotics and some ear drops to help us pass the time until Sloane's surgery! Not such a bad ting really....I don't mind killing some of the germs hanging out in her lungs too before surgery :)