April 30, 2013

Mystery Hostess!! Will it be YOU?

I'm taking a much needed break from the medical updates to have some FUN! I just recently launched my own Stella & Dot business and I want to pass the perks along to you! Here's your chance to walk always with all the hostess benefits and you don't have to lift a finger. All you need to do is place an order using the link below by midnight on May 10th. Indulge in that statement necklace you've been eying. Complete your favorite outfit with the perfect bracelet. Or pack up for a springtime getaway with one of our new BAGS! There's no minimum order - they all qualify for entry!! For every $100 you spend, I'll throw your name into the drawing again! On May 11th I'll draw one lucky lady to receive ALL of the hostess rewards. She'll receive a link to do her shopping and her new accessories will ship directly to her! Doesn't get much easier than that!! Spread the word too, more shoppers = more rewards. Are you ready?? SHOP!

Shop Mystery Hostess HERE

Need some inspiration?? Here are some of my absolute favorites!!

Spring Awakening Necklace ($138) with Gold Rhea Bangles ($79 for set of 3) 

Renegade Cluster Bracelet in Gold ($59) Eden Bangle ($39) Meredith Stretch Bracelet ($34) and Kismet Bracelet ($36) 

Bahari Necklace ($98) - as seen on Katherine Heigl!

April 22, 2013

Our Trip to Holland

A year ago today, we were sitting in a cold dark room being told that our son had a birth defect. A cleft lip and palate, at the minimum. We were terrified and heart broken. Everything we knew about being parents was put in a bottle and thrown off a cliff. Would he have other problems? Was this part of a genetic syndrome? Would he live a normal life? Would we have to leave him behind in the NICU? Thousands of questions and worries swirled our minds. Shortly after he was born, I stumbled across this essay by Emily Perl Kingsley, a mother of a child with a disability. I've never read something that encompasses our thoughts and feelings so perfectly. Every time I feel overwhelmed by the appointments and therapists and missed milestones, I remind myself that without Hughitt's cleft, I would have never seen the beauty of "Holland."

Welcome to Holland
Written by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this...

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans...the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy.

But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

I don't think of Hughitt's cleft as a disability, per se, but it has certainly come with it's host of challenges. Challenges that do and will (for the foreseeable future) make him different from his peers. Challenges that even at just eight months old (today!!), he has overcome with such courage.

And speaking of challenges - we've conquered the palate repair! On April 1st Dr. Baker repaired Hughitt's palate, nasal floor, and tongue tie. It was a tough surgery but once again, he showed us how resilient he is.

Here he is pre-op... looking a little nervous.

 Shortly after surgery, recovering in the PICU. This is a baby on drugs.

Post-op appointment with Dr. Baker. He checked out great! I love the look on his face... "This isn't funny mom... get me away from this guy."

So where are we now? We're still going to Physical Therapy once a week for the gross motor delay. We're really working on getting him to push up on his arms and strengthen his back and neck. We're trying out these super stylish "Hip Helpers" that work to shift his center of gravity, forcing him to exercise his core. Check out these bad boys.

I'm sexy and I know it.

We'll also start Speech Therapy this week. At this point most babies are making consonant sounds like "mmm" and some are even making repetitive sounds like "nanana" or "bababa". Hughitt is basically mute. He makes some squealing sounds and can laugh, but does no babbling otherwise. This is very common in cleft children because they learn very early that they do not have the internal oral pressure needed to make sounds, so they don't even try. Now that we are post palate repair, we need to retrain him to try and make more sounds. We'll also be on the lookout for any indicators that his repair needs to be modified. For example, if he's consistently sounding very nasally, it might indicate that his repair is too tight.

For now, the orthodontist and plastic surgeon will take a back seat. We will still see them occasionally for check-ups with the craniofacial team at Fairfax, but for the next couple years (fingers crossed!) we won't have to see either regularly. We'll be keeping an eye (or ear, rather) out for his hearing as well. So far we haven't had to see the ENT so we're hopeful we're over the hump on that one.

And that's about it! Enjoying watching this sweet miracle grow into a crazy boy, just like his wacky brother.

And a funny for the day - at one of his recent appointments I was asked if his face was swollen from his medication. HA! Nope, those are just his cheeks. Gotta love 'em.

February 22, 2013

Happy [half]Birthday to You!

Holy moly has it really been six months since my little stink bomb of a miracle came into the world?? I really just can't believe it. Almost exactly a year ago we had just found out we were having another boy and were living blissfully unaware of his cleft. Now here we are, one surgery in, another on the horizon, and more in love that I ever could have imagined. (I'll be the first to admit, I was skeptical about my physical ability to love another child as much as I loved Jack. I'm blown away by my heart's capacity to love another child THAT much. It's an absolute phenomenon. But I digress...)

So what's been going on in the Hawkins' house? We've been busy with doctors appointments, as usual. We got a new nanny who we love - she doesn't even flinch when H projectile vomits all over her first thing in the morning. True sign of a keeper. Oh yeah, and Jack uses the potty. Did you get that? JACK USES THE POTTY! We've had a few set backs here and there, but for the most part he is doing so great and I am so proud of him. I'm mostly proud of the $80/month I'm saving on not having to diaper two butts. That's shoe money, folks!

Onto the Hughitt update. We're almost 3 months post lip repair and he is doing fantastic. He's been gaining a crazy amount of weight and has shot up from the 1% pre-op to the 20th at his last appointment. I'm pretty sure it's all in his cheeks. We have a little bit of concern over his scar forming a keloid but his doctor is keeping an eye on it and can touch it up at his next surgery if need be.

He was diagnosed with mild Torticollis (congenital tightening of the neck muscles) so we've been seeing a Physical Therapist once a week to help him stretch them out and build some strength. He didn't get much tummy time for those first three months due to the orthodontic device which has left him with some weakness in his back and shoulders. (Read: new mommies, do your tummy time!)

We've got surgery #2 on the books for April 1st. This is his palate repair and will be more involved than his last surgery so we are a little nervous. I lose my cool when I burn the roof of my mouth on pizza - I can't imagine the pain of having your entire palate dissected, rearranged, and sewn back together. I hate the helpless feeling of knowing he is in pain, but we will be in great hands at Georgetown and we'll have all the help we'll need. He's shown us before how resilient he is, I'm confident he'll bounce back quickly.

So that should be it for the next few years! (Crossing my fingers, knocking on wood, putting on my lucky socks...I'm open to other superstitious suggestions...)We'll have to do some re-learning when it comes to eating, which may involve some occupational therapy, but hopefully that's our last hurdle until we get into speech development.

Here are a few recent pictures of our half-a-year-old boy wonder, otherwise known as Cheeks McGee:

And one of our super potty peeing, big wheeling, heart breaking two year old badass: (ok let's face it, he wears entirely too much plaid to ever be a badass, but he's still cool)

September 18, 2012

Commence Operation Smile.

As you all know, we welcomed our sweet son Hughitt Richard on August 22nd. He is absolutely amazing and perfect and every second of worry and anticipation over the last several months seems a distant memory. He's named after my parents (Hughitt was my mother's maiden name) and my hope is that he embodies their strength, perseverance, and kindness. He's already proven to have quite a little personality and I am so excited to watch him evolve into the little boy he will soon be.

While I now don't even notice his cleft, it is unfortunately more severe than we had anticipated. It's very wide on the left side and leaves him with very little hard and soft palate. This was a setback in the beginning but our little fighter has successfully overcome his first hurdle and become quite the little pig. He requires a special bottle (which conveniently cost about $40 a piece... already showing a taste for the finer things, I see...) but he has little to no trouble eating. Hughitt: 1, Cleft: 0.

Last week we had our very first visit with the craniofacial team who will be treating him over the course of his childhood and adolescense. Because he is so little and his needs really won't be determined until he starts talking/getting teeth/etc, this visit was much more of a meet-and-greet. Here's a quick round-up of the folks who will be playing an integral part in our lives over the next decade+:

- Plastic Surgeon: This one is pretty obvious. He will be responsible for the cosmetic reconstruction of Hughitt's face, gum line, and palate. Because we couldn't settle for just any old plastic surgeon, we chose one who also has degrees in dentistry and oral surgery (over achiever?). He'll coordinate with the other members of the team to determine the best timeline for Hughitt's surgeries.

- Orthodontist: We are so lucky to have access to one of the few orthodontists in the country qualified in cleft care and the use of the NAM device. The NAM device is sort of a cross between a retainer and headgear (better now than in 7th grade, right?) It will pull his palate and gum line together while reshaping his left nostril, which is flattened due to his wide cleft. If all goes as planned, the cleft will be significantly reduced by the NAM, ultimately making the reconstruction easier and more natural looking. He was fitted for the device at our team visit last week and will have it put in on Thursday. We will visit the orthodontist once a week to have the device adjusted and tightened. Each week she'll send updates to the plastic surgeon and together they will decide when he's made enough progress to have his lip repaired. The rough timeline is 12 weeks, but could be anywhere between 10 and 16. We'll just have to wait and see! It looks something like this, and will have to be taped to his face:

Otolaryngologist: Who knows how to say that word anyways? This is the ENT (ear, nose, throat) doctor who will primarily be concerned with Hughitt's ears and hearing. Because children without palates can't equalize pressure in their ears (like when you swallow to make your ears pop on an airplane) they are susceptible to the build-up of fluid in their ear canal surrounding the eardrum. Not only can that cause painful ear infections, but left untreated can cause hearing and speech problems down the road. Imagine hearing everything like you are underwater - that is how a child with heavy fluid build-up will hear and develop speech. As a precaution, he will most likely have PE tubes inserted into his eardrums during his first surgery. (The same tubes Jack had put in, easy-peasy). I tried to find a good picture to share but upon searching Google image for "PE tubes" was immediately grossed out. Search at your own risk.

- Audiologist: This doctor will work closely with the ENT to ensure Hughitt's hearing develops properly and isn't affected by fluid build-up. He passed his first hearing test so we're off to a good start!

- Speech Pathologist: While it might seem silly for a newborn to be seen by a speech pathologist, these professionals are also suck/swallow experts. They will monitor Hughitt's eating habits and patterns to ensure he is working the right muscles and eating efficiently. She was very impressed by his suck/swallow/breathe pattern and didn't see any issues with his current eating technique. We'll have to reevaluate after each procedure/surgery, but so far so good! Unfortunately, about 80% of cleft children require speech therapy to overcome an impediment but are almost all overcome by early childhood.

- Oral Surgeon: This one we won't really see often until Hughitt starts to get his adult teeth around 8 years old. He'll work closely with the plastic surgeon and orthodontist to perfect his gum line and jaw. He'll likely need a bone graft to completely close the gap in his gum line so his adult teeth can come in properly. We've been given hope that by the time he needs this surgery, synthetic bone will be FDA approved (it's currently being tested) eliminating the need to harvest bone from his leg or ribcage. Medical science never ceases to amaze me!

So that's a wrap as far as his current medical team is concerned. We're extremely confident in each one of these individuals and know our son really is in the best hands.

I'll post another update next week once he's had his device put in and include some pictures. We'll be taking pictures at the orthodontist each week so it will be great to see the progress he makes from week to week.

Thank you all so much for your continued support and prayers! We are so appreciative and Hughitt is so blessed to have you all in his life!!

June 14, 2012

Onboard the Smile Train

"I see you declined the amnio as part of your prenatal screening - you may want to reconsider." These were the first words out of the doctor's mouth when he walked into the room. A doctor we had never met, and planned on never meeting again. A doctor who was supposed to walk into the room and tell us that the images captured by the radiologist at our routine 20 week anatomy ultrasound looked perfect and we could go home and enjoy the last half of our pregnancy. Before I could even take a breath he continued on about the risks and benefits involved with an amniocentesis and added that it could be done that day if we wanted to proceed. I nervously laughed at his seemingly rehearsed little speech and told him we would pass. That's when he sat down, looked me in the eye for the first time and said "There was a finding on your scan, so you may want to reconsider." I know for a fact I stopped breathing and my heart may have actually stopped beating at that exact moment. I stared at him blankly, as if he had just told me a joke and left out the punchline. By the time I found words, it seemed like an eternity had passed. I'm not really sure how the conversation went over the next few minutes, my mind was racing at a pace too fast for my memory to keep up.

"Your baby ("our son" I interjected) - Your son has a cleft lip and palate." is the basis of what I remember. It appeared complete on the left side (complete meaning it runs from the lip through the palate and nostril) and incomplete on the right (the nostril and palate are intact, but the lip has a cleft). My knowledge of clefts at that time ran about as deep as the Operation Smile commercials - showcasing impoverished, grown children with severely malformed facial features. I could feel my heart beating in my stomach as he continued on about our increased risk of genetic syndromes, some of which are "not compatible with life". A vast majority of clefts are isolated birth defects (meaning there are no other associated health concerns), but he was encouraging us to move forward with the amnio to rule out the possibility that our child may be suffering from something more serious.

The next part of our conversation centered around the amnio procedure itself. I wanted 100% of the facts before I (once again) officially declined the procedure. For those of you not fully versed on pregnancy terminology, an amniocentesis is a prenatal test that involves a skilled doctor inserting a very large needle into your abdomen and through your uterus to extract amniotic fluid (i.e., your "water"). The fluid contains the baby's DNA, so it can be tested with 99.9% accuracy for genetic disorders. Sounds great, right? Until you read the fine print. The procedure carries a small risk of miscarriage, as it can weaken your amniotic sac causing it to burst, which would then require delivery of the baby at an age too premature to survive.

The answer for us was as plain as day. In no realm of this universe were we willing to risk our child's life because of a "finding" that in all likelihood was completely cosmetic. The odds of our child having a cleft were lower than the risks associated with the amnio - so the odds were clearly not in our favor. There wasn't much discussion - it wasn't an option for us. Dr. M (the perinatologist, who we now see every 3 weeks) gave us a 1-5% chance of having a child with a genetic disorder (significantly higher than the 1 in 10,000 my previous tests had indicated...) - so now we would just have to wait out the next 4 months to see which statistic we would satisfy.

In the meantime, our lives will be, and have been, filled with doctor's appointments, research, and more doctor's appointments. We consider ourselves extremely lucky to live in "Medical Mecca" as Dr.M put it. With access to the nation's most skilled surgeons (Children's National, Georgetown, Johns Hopkins, etc) not only are we guaranteed amazing care, we even have options. We were able to hand pick from the best of the best, and we're confident that our son will be in skilled and caring hands. We've had several follow-up scans and the doctors have been unable to find any other "markers" that our son is suffering from anything other than the cleft. In other words, he looks perfect. We aren't being naive, and know we still have a risk, but we are extremely hopeful and optimistic that our son's cleft is isolated and once corrected, will live a fulfilling, normal life.

Assuming our son is born healthy and without complication, he will be seen by the craniofacial team within the first couple weeks of his birth. The plastic surgeon, oral surgeon, speech pathologist, orthodontist, ontorologist, and pediatrician will decide together the timeline for correction. He will most likely be fitted for an orthodontic device that he will wear until he is ready for surgery - most likely no sooner than 12 weeks of age. The device will help close the cleft naturally, allowing for a more natural looking repair. His lip will be corrected first, then several months later (sometime before his 1st birthday) his palate. He will need anywhere between 1 and 3 subsequent surgeries throughout his childhood and teen years to "perfect" the repair as he grows. We have a long road ahead of us, but we are prepared (dare I say excited?) to get the ball rolling and get our son on the path to normalcy. What doesn't kill you makes you stronger, and I know this experience will only strengthen our family and most importantly, our son. I recently just purchased this print for his nautical themed room - it was too perfect to pass up:

I know this information probably comes as quite a surprise to a lot of people, as we have only shared this news with very few individuals. We considered keeping it to ourselves because we don't want anyone seeing us/this pregnancy/our son as any different than before. This doesn't change who our son is to us, so we don't want it to change for anyone else. He will not look like Jack, and I know his appearance might be surprising to a lot of people - but he is still our son. Jack's brother. A perfect, amazing gift that we cherish regardless of his birth defect. We are so excited to meet him!!

I sincerely hope there are no hurt feelings by our lack of sharing. Please understand that the last couple of months have been a roller coaster for our family and we needed time to get our feet firmly planted back on the ground before letting anyone else in. We are eternally grateful for the support we receive on a daily basis from our friends and family and I know our son will be too. We truly couldn't have a better support system.

I'll leave you with the most clear image we currently have of our sweet boy's face (who I get to see on a pretty regular basis these days.... silver lining...) You can see his cleft extending from his lip to his left nostril - the grayish looking space. Not the best picture, but gives an idea of what we're dealing with.

Less than 10 weeks to go!! Please keep baby Hawkins in your prayers :)