Wide Smiles (Andri's Cleft Journey)

[AndrisMom]

Andri was born on November 15th, 2007 with a Bilateral Cleft Lip and Alveolar Ridge.  We had no idea before her birth what this meant.  Since her birth, I've come to appreciate and admire what cleft families call Wide Smiles.  I miss Andri's wide smile, she was always the most beautiful baby ever born to us.  We still look at other newborns and do a double take, 'normal' smiles look funny to us. 

I scoured the internet, interviewed medical providers, and generally made a nuisance of myself all over the place before deciding the best Team and Surgeon for Andri was the team at Joe Dimaggio Children's Hospital in Hollywood, FL.  Dr. Stelnicki is one of the leading surgeons in cleft repair, specifically in the prevention of scarring.  This guy is the most OCD person I've ever met when it comes to scarring.  But I wouldn't have it any other way. 

As we gear up for Andri's second surgery, I've been looking through her old photos and decided to share this with other moms.  Whether you know us, are just curious or have your own wide smile at home, this is in the hopes that it will help another family see that the journey is priceless.

A picture of our new family, Andri is only a few minutes old.  As her head was emerging the doctor said "The baby has a birth defect".  As drugged as I was, the only thoughts that came to my mind were is it her heart? Her lungs?  Is she going to survive?  Nope, it was just a cleft. Just a cleft makes it sound minor, but compared to what could have gone wrong it is minor.

Andri at 6 weeks old.  She was (is!) the most beautiful thing we had ever seen.  Her big blue eyes really detracted from her wide smile.  Part of the challenge with Andri was feeding her.  We discovered at 2 weeks old she was not able to breastfeed as we had thought.  The whole family, including her grandparents and aunts, determined she would eat as much as she wanted even if we all developed arthritis from trying to squeeze milk into her.  We were introduced to the Haberman Feeder around 3 weeks old, what a life saver!  It still took 45-60 minutes to feed her, but at least our fingers weren't numb and we didn't need to trade adults in the middle.  The whole time this was happening, I was using a breast pump to provide as much breast milk as possible to carry her through the surgery. I didn't realize that raising a child was this much of a team effort.

Dr. Stelnicki referred us to Dr. Larumbe at Nova Southeastern University in Davie, FL for NasoAlveolar Molding.  Andri hated her NAM, it became known as the Damn NAM.  Just like dentures, it had to be cleaned everyday and reinserted.  Another team effort, even then she was a stubborn little bugger and did not want it back in her mouth.  There were never less than 2 adults at all of her NAM appointments.  Even though it was on a Wednesday morning an hour and a half away, someone always went with us.  By involving the entire family they were able to get a little more insight into Andri's condition and help us with her care.

The night before Andri's surgery myself, John, and Carrie (John's mom) all made the trek to Hollywood.  We had planned and planned to make it as easy as possible.  We were stocked with formula, breastmilk, and Pedialyte because I was determined my baby would not be hungry.  When it came time to hand her over to the OR nurses it was the hardest thing I've ever done.  From that point on we were helpless to help her.  My only comfort was that I knew I put her in the most capable hands I was able.  But it's hard to trust someone else with your precious child. 

The surgery was to take about an hour, it took a little longer.  Every extra minute was excruciating.  We watched the monitor for her number to turn green constantly.  Another family sat down near us, their 20+ yr old son had just been involved in a motorcycle accident.  A police officer was there with them.  He was waiting for the surgeon to say if the surgery was successful or if he would have to charge the driver who hit him with manslaughter.  It put our situation in perspective.  Finally her number was green and a few minutes later Dr. Stelnicki came in to tell us she had done marvelously and he was very happy with the repair. 

Post-op recovery was relatively easy.  With the three of us there, Andri was constantly held and her every need was taken care of by someone she was familiar with.  We changed and weighed her diapers, watched the clock to make sure her meds were on time and offered her bottle frequently.  Because of our diligence and Andri's toughness, she was released from the PICU less than 24 hours after her surgery.  Recovery at home was a little different, but once again there was a team effort.  The only issue we encountered was her nasal stents became blocked.  We had instructions on how to clean them, but she was still unable to breathe through her nose.  After a night spent holding her mouth open so could breathe through her mouth, I called her surgeon.  I took her stents out, cleaned them with sterile saline and reinserted them.  Not exactly what I was told to do, but it worked. The had been clogged at the very top by a blood scab.  Wish I had a picture of that b/c it was really gross.  (Picture is 2 days Post-Op)

After a few days the stents and most of the steri-strips came off and so did her 'No-nos'.  About a week after surgery, all the steri-strips came off. (Pictures is 10 days post-op)

Andri was acting like nothing had ever happened within a few days of coming home.  She was off Morphine within a few hours of surgery, then off the Tylenol w/ Codeine within 2 or 3 days, and off Tylenol within a week.  I probably left her on a little longer than necessary, but why take the chance? (Picture is 12 days post-op)

By 6 months old (3 months post-op), her incisions had faded quite a bit.  Most people didn't notice them at all. 

By 12 months old, if you didn't know what you were looking for you would have no idea she'd had surgery. 

Andri is now 17 months old and nobody knows she was born with a cleft or had surgery unless we tell them.  (Picture is taken in Colorado at 16 months old)

[nojomommy07]

Apr. 29, 2009 at 12:13 PM

Thank you for sharing your story and the pictures of your beautiful daughter!  None of my children were born with a cleft...but when I see a baby that has one, I don't think it makes them look bad in any way.  I see the beauty in the baby.  I came across a newborn and his parents in my pediatricians office last year, aand their son had a cleft lip.  I was talking to the dad, and I just told him he was adorable and marveled at how small he was.  When the mom came back, I was being called back with my son, so I just made eye contact, told he she had a beautiful baby boy and headed in to the back.   But not before I saw the tears in her eyes...:)  I didn't say it to make her feel better...I was just stating a fact.  You have a gorgeous family!

[deadheadjen]

Apr. 29, 2009 at 12:24 PM

You have an absolutely gorgeous daughter - before, during and after surgery. She's very lucky to have such a wonderful and caring family to help her through everything. :)

[MCKsmomma]

May. 1, 2009 at 10:35 PM

such a brave mommy and daddy and of Course little girl! she is beautiful and congrats on the new lil bundle