Jackson's Smile

CA Trip & Jackson's Smile Art Benefit

2009-11-12T11:05:00.000-08:00

Jackson and I spent the past week in California visiting with friends and family. We loved seeing familiar spots and friendly faces. We were even able to make it to the gallery opening for the Jackson's Smile Art Show Benefit. We had such a wonderful time seeing friends and making new friends! Thank you to all who came to support Jackson and for the generous donations. We are slowly trudging through Jackson's medical debt but we know we are not doing it alone. We can't thank you enough for your loving support.

Unfortunately, Sunday night, while we were still in California, Jackson started to run a fever. We have spent the past 4 days trying to figure out what was going on since his fever has been consistently around 103.5. Yesterday, we spent 2.5 hours at the doctor's office running tests... Flu test came back negative. Blood test showed elevated white blood cell count. Following a chest x-ray and urine test, it appeared Jackson was on the onset of bacterial pneumonia coupled with conjunctivitis. So he's now on antibiotics and eye drops and we're hanging low.

To end on a happier note... Just wanted to reiterate how lovely it was to see good friends...

(photo by jessie clarke)

Jackson's First Art Show

2009-11-06T23:00:00.000-08:00

The gallery opening was a success! We raised close to $800 in donations and print purchases! Thanks so much to everyone who came out to support the cause. It was a wonderful night full of friends both new and old, cupcakes, wine, music, art, and a whole lotta love. Jackson and his Mom Halle were visiting from Texas and were able to make it to the show. It was fun to see him walking around and playing with the other kids. I was busy talking to people and didn’t take that many pictures, so here are just a few snappings.

Thanks to all who donated their time, energy, and talent to make a big impact on a little boy!

Remember Nautical Bean will be featuring Jackson’s Smile gallery for the entire month of November so be sure to check it out if you are in town. Also, you can always buy prints directly from the website or simply click the Make A Donation link.

Michelle Warren {Featured Artist}

2009-11-06T15:29:00.000-08:00

{Michelle Warren} Michelle is a Central Coast wedding and portrait photographer with a fine art film style. Educated at Brooks Institute of Photography in Santa Barbara she has a vast knowledge of technique and cameras, both old and new. If you ever catch her shooting, you will find her with 3 cameras hanging off her neck and bag full of lenses and obscure film bodies. She is most recently a proud new mother!

Buy one of these images to support baby Jackson at: {Michelle Warren’s Gallery}

Jackson's Story

2009-11-03T10:18:00.000-08:00

Jackson's Smile is where compassionate giving meets photography and art.

Jackson's smile wasn't free like most little boys. He was born with a rare syndrome called “Simpson Golabi Behmel” as well as a cleft lip and palate. His smile has cost hundreds of thousands of dollars thus far. Jackson has already had two major surgeries in just his first year of life. He is destined for a childhood of plastic surgeries, not to mention other surgeries to address the various anomalies associated with his extremely rare syndrome.

His parents, Daniel and Halle, are doing all they can to provide Jackson with a healthy life. Without insurance and financial gifts from others, Jackson's medical expenses would total close to one million dollars by now; just so he can eat, drink, and smile. Simple gifts that most of us take too much for granted. Doctors visits, tests, surgeries have put Daniel and Halle into a world of financial debt.

I photographed Jackson’s parents’ wedding a few years ago and I have been compelled to give back. It has been moving to watch as this family has struggled to care and nurture this beautiful little guy to health and stability. It hasn’t been an easy road and definitely not one that a young married couple anticipates when they become pregnant. However, It has been a beautiful tragedy; one that has grown the faith and love of Daniel, Halle and many of their family and friends.

In an effort to give more than just a few bucks, I have come up with this photography project -Jackson’s Smile. I decided that to GIVE BIG, I would ask my friends for help. Some incredible photographers have donated their beautiful abstract and landscape photographs to raise money to offset the medical bills that have resulted from giving Jackson the chance to have a healthy life; to have the chance to smile.

We are so blessed to have so many people that want to be involved! My wonderful web designers {805 Collective}, my fantastic print lab, {ProDPI}, and my friends over at {NextProof} have generously donated their time, software, and equipment to make all of this possible. Now its up to you. Please browse through the {photographer’s galleries} and purchase a print or two!

*A portion of the proceeds will go directly to support more kids like Jackson at the Craniofacial Center at the {Children’s Medical Center Foundation of Central Texas}.

Art Show at Nautical Bean! {Friday November 6}

2009-11-01T09:53:00.000-08:00

For the month of November the artwork of Jackson’s Smile will be featured at Nautical Bean Cafe.

Read all about the heart behind this photography collaborative fundraiser at www.jacksonssmile.com.

Come join us Friday the 6th for the gallery opening from 6:30-9:00! We will be displaying and selling prints from 11 awesome photographers from all over the country. Buy a print, give the gift of smile!

Delicious cupcakes will be provided by Amy Bakes Cupcakes and live music by Modern Music Academy. It will be more fun than pushing a barrel of monkeys down a hill!

Genetics

2009-06-27T10:55:00.001-07:00

Daniel and I have been wanting to update you on recent news. We have been undergoing many different types of tests related to Jackson's syndrome. If you have been following our story, you may have noticed the numerous tests that have been run in the past few months.

On Monday, June 22nd, we went in to see Jackson's geneticist to go over the results of these tests. Here are the significant results that were found:

Abdomen Ultrasound - Jackson has a duplex left kidney. His geneticist has referred him to a local children's urologist.
Spine X-Ray - Jackson has what is called lumbar kyphosis. He is being referred to a local pediatric orthopedics doctor.

There were some other elevated results in the blood and urine samples, including the AFP, or Tumor Marker. He will be tested regularly (every 3-4 months) in order to monitor and track these levels, and catch any possible tumor growth early.

We also ran a couple of other tests involving genetics. Daniel and I both had the Chromosome Microarray testing done because Jackson showed a slight deletion on chromosome 2. Neither of us had this same deletion.

Finally, I went through Carrier testing for Simpson Golabi Behmel Syndrome (SGBS). As previously stated, SGBS is X-linked recessive inherited with a slight possibility of what's called de novo mutation. Ever since we found out about Jackson's diagnosis, we have believed that I was most likely a carrier for this syndrome, as that made the most sense to us. If you remember, on Jackson's 1st birthday I wrote:

Simpson Golabi Behmel Syndrome (SGBS) is an X-recessive syndrome. While I'm not entirely sure what this means, I know I'm the carrier of it. And this carries with it a heavy weight. I live each day knowing I gave my son a syndrome he has to live with the rest of his life, however short or long that life is. And I also live knowing he may be all I get, my one chance at biological children. I have a 25% chance of giving any other children this syndrome. I don't know if I can logically make that decision. We're not at that point yet, and honestly, it's too much for me to bear at this time.

On Monday, the geneticist went over my carrier testing results. She practically said it in passing. Daniel completely missed it, and I was staring at the piece of paper in disbelief: SUMMARY OF RESULTS: NEGATIVE. "Daniel," I said, "I'm not a carrier."

This began a week of trying to process this news, and reverse our thinking. I'm not entirely sure where we're at now. We're still a bit mind boggled.

I remember when I heard the news, I wanted to break down crying. The odds of us having a baby with SGBS are rare, extremely rare even. SGBS is classified as a very rare syndrome, with only 120 known cases in the world. But having a baby with SGBS as a result of a de novo mutation, even more rare. In that moment, I remember thinking what an incredible gift we have been given. What a beautiful, remarkable little boy. We have as much chance of having a child with SGBS as anyone in the world (without the gene). And for some reason, Jackson was given to us.

This also opens up the possibility of having other children. For nearly 15 months, we have been wondering at our ability to have other children, and other children with SGBS. We have considered IVF (In Vitro Fertilization) coupled with PGD (Preimplantation Genetic Diagnosis). SGBS is on the list of diseases that can be tested. That is no longer an issue.

As far as where we are now... We're, honestly, still attempting to wrap our heads around this news. For so long, we have believed one thing. We're not quite sure what to do with a completely different thing.

Jackson is an incredible little boy. So sweet. So fun. So happy. So loving. He's adventurous and smart and makes friends easier than I do. Yesterday I found myself, sitting with my hands covering my face, crying. In a few moments, I felt a hand on my shoulder. I looked up and there was Jackson, standing in front of me. I said, "Jackson, Mommy's sad." He then wrapped me in a bear hug. That's the perfectly wonderful little boy we have.

Thank you for sharing life with us.

Mike Colon {Featured Artist}

2009-06-09T17:56:00.000-07:00

{Mike Colon} is an international photographer and educator specializing in digital wedding photography. He has been recognized by numerous publications worldwide, including the cover of Studio Photography & Design, Rangefinder Magazine, Grace Ormonde Wedding Style, Grace Ormonde Marriage, Ceremony Magazine, Modern Bride, The Knot, WPPI Monthly, "The Best of Wedding Photojournalism", and "The Best of Digital Wedding Photography”.

All magazines and publicity aside Mike is a man of faith who is happily married with 2 boys and twins on the way. Mike’s heart is to exhibit integrity and generosity in his business and personal life. He has not only transformed the world of wedding photography, but he has made a serious impact in the lives of the impoverished people of this world. Through Thirst Relief international he has helped save thousands of lives in Brazil by providing funds and publicity about their need for clean drinking water. He has a upcoming trip scheduled for Tanzania, Africa where he will bring a dozen photographers to deliver and install water filters while also do a Grace Ormonde photo shoot.

Check out and purchase his images of Florence, Italy at
{Mike’s Gallery} .

17 Months

2009-06-07T16:15:00.000-07:00

Jackson went in for surgery on Wednesday and today you wouldn't even know it! We seriously can't believe how fast he bounces back... The surgeries were successful and we are now on the road to recovery. Phew. One more down.

Today Jackson is 17 months and I just can't believe it! Time feels so slow in some ways and then vanishes so quickly in others. We are loving this season with our boy - he is so fun and his personality so vibrant! He absolutely LOVES people and he cracks us up! I find myself laughing regularly at his crazy antics.

The other day when I got him up, this is what I found:

Talk about bedhead! I still find myself laughing when I see it!

I also wanted to take the time to thank a couple amazing people who have given us incredible gifts. Gifts, not only thoughtful, but unbelievably personal and creative! These people are seriously talented!

First, I want to thank Vanessa of Beloved Jane - an incredibly talented artist and friend! She made me this gorgeous sterling silver necklace stamped with the following:

I can't even tell you how much I adore this necklace! Vanessa, I am amazed by the heart and creativity of your work. Thank you for giving me such a priceless gift. You can also find her here.

And it doesn't end there! Awhile back, I was reading my friend Emery's blog - this post to be exact. While reading I noticed an adorable blanket given to her sweet boy Myer. I loved it! So I looked up the company that made it - Admiral Road. I felt inspired by their sweet and creative designs and so I emailed them to let them know. A few weeks later I received this in the mail:

Admiral Road read our story and were touched by it and put a personalized blanket in the mail for Jackson. And it couldn't have been a more perfect choice! Jackson's favorite stuffed animal is his Curious George (he sleeps with it every night) and he absolutely ADORES monkeys! I put it up on his wall over his crib for now as he loves to look at it... What a beautiful, thoughtful gift. This blanket will be treasured for years to come.

I am constantly amazed by the generosity and grace displayed by people I come across. You inspire me. You move me. You overwhelm me. I want to be more like you.

A Month of Firsts

2009-06-02T19:05:00.000-07:00

We enjoyed our time in California - spent some quality time with family and good friends, hung out in some of our favorite Central Coast spots, celebrated my cousin's wedding, and even had our first overnight since Jackson was born (much needed)! We had a gift certificate for a night at the Cottage Inn in Pismo Beach and we were finally able to use it. We thoroughly enjoyed a mellow night away from our little man and were able to reconnect a bit.

A drummer like his Daddy...

Jackson and his friend, Stew...

We've been settling back into our schedule since we got back to Austin and are enjoying getting to explore our new home a bit. Jackson is doing so well in therapy that he may only need occupational therapy and physical therapy for a couple more months! He is progressing rapidly and learning so much these days. Speech therapy will be ongoing till he is much older, due to being born with a cleft. But he is learning to sign and even has a couple words under his belt ("more" and "go"). He nods in response to questions, waves "goodbye", blows kisses and gives hugs upon request. He is getting more and more fun these days - he is so social and independent.

Jackson's most recent thing is that he is standing up by himself and learning to walk. In fact, he did both for the first time on the same day! Crazy enough we were able to catch it all on video...

Jackson's First Time Standing and First Steps from Halle Whittington on Vimeo.

And yes, I am a tiny bit embarrassed about my laugh in this video... Oh well.

Tomorrow, Jackson is scheduled for another surgery. Originally he was scheduled for surgery on May 18th, but he woke up with a fever of 102.7 and a nasty cough. We called in and they said to bring him in anyway, and they would determine what to do. Because of the cough, the anesthesiologist decided to postpone surgery. He was able to get his new Mic-Key button G-tube in (because it didn't require anesthesia), and we're loving the convenience of it. He is also now able to wear two-piece outfits instead of onesies all the time - a total luxury. Because the Mic-Key has already been put in, Jackson will be getting his inguinal hernias repaired and will be getting circumcised. We aren't entirely sure what the recovery will be like, but we have been told to expect a rough first week. This little guy has been through so many surgeries for his age, he's pretty tough, but it's still hard every time to hand him over... and then get him back in a totally different condition. It's hard not being able to explain to him what is about to happen and prepare him for how he'll feel when he gets out.

We have so appreciated the loving support we have received from so many of you. And we are so grateful to those of you who have supported us through Jackson's Smile - you are truly making a difference in our life and in the lives of other children like Jackson.

Stevie T {Featured Artist}

2009-05-10T21:03:00.000-07:00

Here are a few fun facts about {Stevie T}:
She lives in Maryland close to Annapolis.
She is a lifestyle portrait photography and mostly works with families and children.
She shoots about a dozen weddings a year as well.
She just loves surrounding herself with happy people and documenting their relationships.
She is passionate about recycling and loves to make recycled art; some of which she sells online.
She is big on traveling but hasn't left the country yet... yet!
She has been skydiving and dog mushing in Alaska.
She takes awesome pictures! So go get one at: {Stevie T’s Gallery}

Lisa Lefkowitz {Featured Artist}

2009-04-26T14:46:00.000-07:00

{Lisa Lefkowitz} is a brilliant film photographer hailing from the San Francisco Bay. She has been photographing weddings for the past nine years and has earned national recognition for her luminous, lifestyle images. Lisa’s fresh, elegant photographs are featured regularly in magazines such as Martha Stewart, Elegant Bride, Bride’s and now on Jackson’s Smile! She has donated some beautiful city and landscapes; all taken with her holga film camera.

Buy one of these images to support baby Jackson at: {Lisa Lefkowitz’ Gallery}

A Day In The Life...

2009-04-23T21:15:00.000-07:00

A lot has been happening in our lives lately. Between appointments, tests, more appointments and therapy, Jackson has a pretty full schedule.

In the past few weeks, we have seen Jackson's geneticist, ENT, GI, new pediatrician and therapists. We have also run a number of different tests, primarily in regards to genetics and problems related to his syndrome. Some of these tests are a full abdomen ultrasound, chest and spine x-rays, blood and urine samples, carrier blood test (for me), and chromosome microarray genetics blood tests for Daniel and I. Phew. Since we found out about Jackson's syndrome, there have been a number of tests that have needed to be run, some even 3-4 times per year, to monitor Jackson's kidneys and other risk factors associated with the syndrome. None of these tests have been run until now, under the care of Dell Children's Medical Center. Just to explain a bit about why these tests are being run, I'll give a little bit of the rundown:

Abdomen Ultrasound - to check for kidney tumors and/or Wilms' Tumor
Chest X-Ray - to check for heart abnormalities associated with SGBS
Spine X-Ray - to determine the level of scoliosis Jackson has
Urine Sample - to check for neuroblastoma
Blood Sample - to check for gonadoblastoma or hepatocellular carcinoma
Carrier Testing (Halle) - SGBS is X-linked recessive inherited with a slight possibility of what's called de novo mutation. This will help us determine exactly how Jackson got this syndrome.
Chromosome Microarray Testing - There was a slight deletion of chromosome 2 in Jackson's DNA. Daniel and I are now being tested to see if this deletion was inherited or not.

If any of you are interested in more information specifically related to SGBS, this article has been the most helpful to us thus far.

In other related news, Jackson has another surgery date set. He saw his new GI doctor, and will be getting the G-tube he currently has switched out to a Mic-Key (skin-level device). Also, if you remember from last year, Jackson has two inguinal hernias. He had to go to the emergency room last year, and thankfully, the surgeon on call was able to push it back in. But we've known since then that he would need to get them repaired at some point. Lastly, Jackson was supposed to be circumcised in the NICU at Sierra Vista, but for a number of reasons, it didn't happen. Now, a few complications have surfaced, and because of this, he will be getting circumcised. These three procedures are set to take place May 18th.

Jackson is really progressing. He is crawling like a mad man, pulling himself up onto everything, walking along furniture, and using his walker regularly around the house and in the backyard. For example:

Jackson walking outside from Halle Whittington on Vimeo.

Jackson sees three therapists currently at Kid Therapy. Tuesdays he sees his occupational therapist, Cara. Thursdays he sees his physical therapist, Sara. And Fridays he sees his speech therapist, Amy. While it makes for a busy schedule, we so appreciate what they are doing for our little boy.

Or big boy... Jackson weighs nearly 30 pounds and is 32 inches tall. Everywhere we go, people constantly tell me what a big boy he is. I had this conversation with a nurse the other day:

Nurse: How old is he?
Me: 15 months.
Nurse: Wow. He is a big boy.
Me: Yeah, I know.
Nurse: But he's not chubby at all. He's all muscle!

That's our boy.

We fly out to California tomorrow. We'll be there for three weeks. My cousin is getting married on May 2nd, so we planned a trip around her wedding. It works out well because Daniel can work from the office there, so he doesn't have to miss any work. We are also looking forward to meeting the new additions! Our sweet friends, Darren and Jessie, just welcomed their son, Reuben Oliver, into their family. And our other friends, Ryan and Cole, are yet awaiting the arrival of their baby boy.

For those of you keeping up with Jackson's Smile, we just wanted to share how much we appreciate your support. Thank you to Jose Villa, Joel Flory, Riccis Valladares, Sarah Rhoads, and Gabe McClintock for their incredible and generous contributions. And thank you to all of you who have purchased a photograph in support of us and other children like Jackson.

Amelia + Justin Lyon {Featured Artist}

2009-04-22T11:26:00.000-07:00

{Amelia + Justin Lyon} are some of the sweetest hip-est wedding and portrait photographers in all of Southern California. Wikipedia it; It’s a fact! Or… just take my word for it. ;)

Amelia has donated some beautiful images compiled of branches, leaves and sunlight. Images with so much serotonin they can put anyone in a good mood. Imagine waking every morning to a 20x30 bright and sunny canvas hanging on your wall of one of her tree-scapes… (close your eyes, imagine it) and then buy one! I’m positive the purchase will be life changing.

Justin has offered up some of his most excellent shots taken while traveling the country on his legendary Mammoth Men man-cations. These images capture the gritty backroads and allyways of America’s urban terrain through the adventurous spirit of Justin’s lens. His images should inspire you to get outside, pick up a camera, ride a bike or hop on a bus and explore your world. {Justin's images coming soon}

Buy one of these images to support baby Jackson at: {Amelia + Justin Lyon’s Gallery}

Gabe McClintock {Featured Artist}

2009-04-17T16:59:00.000-07:00

{Gabe McClintock} of Perspective Eye Photography is a observer, a photographer, a dreamer, a traveler, a Canadian. He is a husband and most importantly he is a Dad. Because of this, Jackson’s Smile resonates deep within Gabe’s heart. His images capture the deep beauty and wild drama that this world and its people have to offer.

Buy one of these images to support baby Jackson at: {Gabe McClintock’s Gallery}

Sarah Rhoads {Featured Artist}

2009-04-11T17:12:00.000-07:00

{Sarah Rhoads} is a Seattle based wedding and lifestyle photographer that captures emotion and beauty in such a way that just makes the viewer immediately feel love and joy. Her husband Chris shoots with her when he isn’t recording music as a session bass player. They are perhaps one of the raddest artistic couples in all of the great northwest! If I didn’t think they were perfect for Seattle I would selfishly want them to live in California; closer to me. ;)

Buy one of these images to support baby Jackson at: {Sarah Rhoad’s Gallery}

I am especially fond of this image because those are the words of a Ray Lamontagne song that my wife walked down the aisle too. We have this print proudly displayed in our home! I gave it to my wife on our 2 year anniversary and she cried… well, almost.

Riccis Valladares {Featured Artist}

2009-04-10T17:49:00.000-07:00

{Riccis Valladares} is an amaaaazing black and white photo artist. He has some beautiful images to offer from his travels in Paris and beyond. Riccis shoots 100% film through his Leica and rangefinders and is all about fine art. He processes and prints his images in his own darkroom for his clients; which is such a dying art in these digital days. Enjoy his beautiful images and buy a Valladares work of art!

Buy one of these images to support baby Jackson at: {Riccis Valladares' Gallery}

Joel Flory {Featured Artist}

2009-03-05T22:44:00.000-08:00

I have never met {Joel Flory} in person, but I know that if I did, we would be fast friends. He went to college in my home town and I’ve heard nothing but sweet goodness about him. Must be why he was so eager to donate images to support Jackson. These gorgeous images are from his trip to Patagonia, which until now, I thought was a clothing company. Who knew?!

Buy one of these images to support baby Jackson at: {Joel Flory's Gallery}

*A portion of the proceeds will go directly to support more kids like Jackson at the Craniofacial Center at the {Children’s Medical Center Foundation of Central Texas}.

Contributors + Galleries

2009-02-04T07:00:00.000-08:00

Check back to see this list grow as we reveal more of the awesome photographers who we have been invited to donate to Jackson’s Smile.

Purchase images to support baby Jackson here: {Galleries}

{Michelle Warren}

{Mike Colon}

{Stevie T}

{Lisa Lefkowitz}

{Amelia + Justin Lyon}

{Gabe McClintock}

{Sarah Rhoads}

{Riccis Valladares}

{Joel Flory}

{Jose Villa}

{Cameron Ingalls}

Jose Villa {Featured Artist}

2009-02-03T12:13:00.000-08:00

In 2008 {Jose Villa} was acclaimed by American Photo Magazine as one of the top 10 photographers in the world. When you get to know Jose you will discover that he is a generous and all around fantastic person -not to mention a wonderfully talented fine-art film photographer! His inspiration comes from the beautiful countryside surrounding his home in the Santa Ynez Valley as well as his homeland around Guadalajara, Mexico. All of the images featured in Jose’s gallery were taken with his medium format Holga camera.

Buy one of these images to support Jackson’s Smile at: {Jose Villa’s Gallery}

Cameron Ingalls {Collaborator + Featured Artist}

2009-01-13T18:20:00.000-08:00

{Cameron Ingalls} I love people! It’s because of my love for people that I became a wedding photographer in the first place. I photographed Jackson’s parents wedding a few years ago. It has been moving to watch as this family has struggled to care and nurture this beautiful little guy to health and stability. It hasn’t been an easy road and definitely not one that a young married couple anticipates when they become pregnant. However, It has been a beautiful tradgedy; one that has grown the faith and love of Daniel, Halle and many of their family and friends.

In an effort to give more than just a few bucks, I have come up with this photography project -Jackson’s Smile. I decided that to GIVE BIG, I would ask my friends for help. Periodically we will feature beautiful photographs donated by some incredible photographers to raise money to offset the mountain of medical bills that result from giving Jackson the chance to have a healthy life; to have the chance to smile. We are so blessed to have so many people that want to be involved! My wonderful web designers {805 Collective}, my fantastic print lab, {ProDPI}, and my friends over at {NextProof} have generously donated their time, software, and equipment to make all of this possible. Now its up to you. Please browse through the photographer’s galleries over the coming year and purchase a print or two!

Buy one of these images to support Jackson’s Smile at: {Cameron Ingalls’ Gallery}

Awesome Sponsors!

2009-01-09T14:48:00.000-08:00

{805 Collective} is an amazing web, print and graphic design firm based in San Luis Obispo. Other than being awesome artists, these guys are awesome dudes. They love working on creative projects and thinking outside of the box. 805 generously donated their time to make this website and the Jackson’s Smile logo. Thanks 805!

The nation’s premiere photo and press printing lab. {ProDPI} continuously strives to provide innovative products, the highest quality, and an unparalleled customer experience with an environmentally conscious, forward thinking attitude. They proudly use Fuji Crystal Archive Super Type PD Luster finish professional paper as well as Fuji's NEW Pearl paper. DPI will be printing all of the photographs in support of Jackson’s Smile.

{Next Proof} has generously donated the use of their shopping cart and conveniently partners with ProDPI to process the print order and send it to DPI for printing and shipping.

{Amy Bakes Cupcakes}Amy bakes and delivers custom cupcakes with love and care: traditional, gluten free, and vegan delights! We are so thankful for her donation to the opening of our Art Gallery at the Nautical Bean.

Happy 1st Birthday Baby!

2009-01-07T11:30:00.000-08:00

One year ago. 12:14 p.m. 6 pounds 6 ounces 19 1/2 inches of life entered our world and changed it forever.

Happy Birthday sweet boy.

Jackson's First Year from Halle Whittington on Vimeo.

Living with Shattered Dreams

2009-01-06T17:35:00.000-08:00

This post is a bit more of a personal one.

For those of you who have followed our story, you may have noticed the running theme of one shattered dream after another. I'm not sure if any of you can relate. I think our story is not exactly the norm.

Beginning with the initial shock during our first ultrasound (at 12 weeks), there was found to be a nuchal translucency, at which point we had to determine whether or not to find out what that meant. Emotions raced inside me, every fear I've ever encountered looked me in the eye. We underwent the CVS procedure to find out what the cause of this nuchal transclucency was. Our doctors said it was most likely that our baby would either have Down Syndrome or Turner Syndrome, and there was a good chance the baby could die in utero. The results came back telling us we had a completely healthy baby boy; no syndromes were discovered. We were much relieved and encouraged.

Fast forward 8 weeks to our 20 week ultrasound, typically an exciting time for new parents. We were happily expecting to see our baby boy, his tiny fingers, toes, hands, feet... Somewhere in the middle of the ultrasound, the doctor appeared concerned and began looking more intensely at our baby's face. Finally, after what felt like hours, he told us what he saw. A bilateral cleft lip and palate. My heart sank. I couldn't hold the tears back. Our boy had a cleft, and the most severe kind.

This began months of trying to process this news. I researched all I could, reading books, articles, pamphlets, trying to wrap my mind and heart around our son's condition. However, the ache never seemed to go away. With the news of every healthy pregnancy to the arrival of every 'perfect' newborn, my heart would once again revisit its pain. I was never mad at anyone for having a healthy baby. I never wished them the same kind of pain I was encountering. I was just lost, confused, grieving over and over the loss of MY perfect baby, the one I had always dreamed would be mine someday.

I have had to give up many dreams. The dream of natural childbirth. The dream of cradling my baby when he was first born. The dream of breastfeeding. Many, many dreams big and small have been ripped from my grasp, pried out from my fingertips and have drifted away to Neverland as I have stood helplessly watching them fade into the distance.

Our son spent his first five weeks in the NICU. I can't tell you how many trips I made to and from the hospital during that time. Sometimes they let me touch him, sometimes kiss his sweet face, sometimes hold him between the tests they were running on him. I often sat outside his bed as he lie underneath the bilirubin lights since he was so jaundiced, holding his tiny fingers. I remember the first time they allowed me to hold him skin to skin, his little body on my chest. He fell asleep on me. And when they had to take him away, he cried and cried and cried. I remember tears filling my eyes as the nurse put him back in his bed.

They ran so many tests on him during that time. There were a number of other anomalies they had found and the doctors were avidly searching for an answer. With every possible test, there was a possible diagnosis. Daniel had to finally ask the doctors to only report to us concrete findings, no more "hypotheticals", as it was too much for my mind and heart to handle. I ached with every possible diagnosis.

We finally were able to take him home. We were so relieved... until the reality hit. We tried every bottle possible and no matter what we tried, our baby wasn't able to take more than an ounce down at a given time, most of the time he didn't make it that far. So we learned how to tube feed him, sometimes we could leave the tube down, sometimes we had to put it down every feeding. The older he got, the more challenging feeding was. Sometimes I still get a bit jealous when I watch a baby take a bottle or breastfeed.

I took my baby in for his 3 month check-up with Dr. Bravo on April 7th. It was then that we received the news that he has an extremely rare syndrome - Simpson Golabi Behmel Syndrome (SGBS). There are currently less than 120 known cases of this syndrome. It often goes undiagnosed as it can be mild to severe in form. The more severe cases are the most studied. In most of the severe cases babies with SGBS die prior to reaching two years of age, most often from heart failure or kidney tumors. We still have yet to find out the extent of what we're dealing with. My heart aches most days with the unknown.

SGBS is an X-recessive syndrome. While I'm not entirely sure what this means, I know I'm the carrier of it. And this carries with it a heavy weight. I live each day knowing I gave my son a syndrome he has to live with the rest of his life, however short or long that life is. And I also live knowing he may be all I get, my one chance at biological children. I have a 25% chance of giving any other children this syndrome. I don't know if I can logically make that decision. We're not at that point yet, and honestly, it's too much for me to bear at this time.

People say "time heals all wounds." I beg to differ. Time simply passes. I think it's what we do with our time that either helps us, heals us or keeps us stuck where we are. My dreams have been shattered, my hopes dashed upon rocks, my heart broken open and spilled out, emptying itself drop by drop as I walk through each day. But I want to live. I want to give. I want to love. So while I may be broken and you may see my flaws as if in broad daylight... While I may live each day in uncertainty and you may question whether I have any direction... While some days I wake up and can barely get myself out of bed and you may wonder if I have what it takes... I won't stop. I won't give up. I won't sit by and watch myself wither away. I see with eyes wide open. I feel with arms wide open. I ache with a heart that is familiar with pain. And I'll love with everything I have.

My baby turns one tomorrow. My broken baby is a whole year old. I love you, Jackson.

CHLA Post Op

2008-12-05T12:40:00.000-08:00

Here's a video of Jackson in the hospital, a couple days after surgery. The noise you hear in the background is why I was so frustrated with this hospital experience. But our boy is still so sweet, trying to play with toys but not quite feeling up for the task. I just love this little guy.

Palate/G-Tube Post Op from Halle Whittington on Vimeo.

3 Weeks Post Op

2008-12-04T22:20:00.000-08:00

So, once again, it's been awhile... Life has been a bit crazy since Jackson's palate surgery. Seriously crazy.

First, to recap surgery. We stayed the night in the Ronald McDonald House prior to Jackson's surgery Wednesday, November 12th. We arrived at CHLA at 7:30am and began filling out the necessary paperwork. And then we waited. And we waited some more... And we waited a little bit more...

Finally, at noon, they were ready. Now, keep in mind, Jackson hadn't eaten since 9pm on Tuesday night. And we can't feed him ANYTHING because he has to have an empty stomach prior to surgery. Poor guy was really hungry. So we spent those hours finding creative ways to distract our hungry son until the time they called his name. I suppose distracting our hungry boy helped us distract ourselves at the same time. Sort of.

At noon we were brought to another room where we waited a bit more. Thankfully, it was not as long as the prior wait. We changed him into hospital garb and soon our boy was wheeled away from us, having no clue what was about to happen. Handing him over broke my heart because I knew when we got him back, he would be in pain and out of sorts.

Then Daniel and I waited some more. Jackson had 3 procedures done, so we knew it would take awhile, but we weren't exactly prepared to wait for the next 5 hours. His surgeons came to update us occasionally on how it was going. First, his ear tubes were checked. The doctor thought he would need to have new tubes placed, but, thankfully, the tubes looked great! No need for new ones. Phew. Next up was the gastroenterologist. His G-tube went in with no complications. Finally, the plastic surgeons and his palate repair. This was the longest procedure of the day. And it took longer than they anticipated.

Around 5:30pm, they finally called us in to see him. And he looked awful. It is ridiculously difficult to see your 10 month old like this. Not the baby I had left earlier. I couldn't help the tears. He was in pain. And I couldn't do anything to help him. He was also having issues breathing following the anesthesia, so he was on oxygen. Scary. On top of this, Jackson had a stitch through his tongue taped to the outside of his face. This was a precaution in case anything went wrong and his tongue obstructed his breathing, so the doctor could pull his tongue out of the way if needed by way of the stitch. Crazy. And I'm sure very comfortable.

And thus began one of the worst weeks we've yet to encounter together.

Jackson had to stay in Surgery Recovery for over 24 hours because there were no rooms open in the hospital. NO ROOMS. Typically, children only are there for a few hours at the most. So we have a baby that has just come out of surgery stuck in a large room, separated by curtains. Beyond frustrating.

26 hours after he got out of surgery, Jackson finally got a room. We were so happy and relieved... until we arrived in the room. This room was not a large room, however there were 4 cribs in it. I cannot even express the rage I felt. Every 20 minutes or so, our exhausted baby would get woken up either by another baby screaming, a nurse who HAD to check his vitals right NOW, or other families in the room laughing, talking VERY loud, playing the TV at a HIGH volume, and the list goes on. And this lasted until we finally left on the following Monday. I was not a very happy Mama to say the least.

We were originally supposed to leave on Friday. Then Friday turned into Saturday, and Saturday to Sunday... As far as his palate was concerned, the doctors could've released him on Friday, but the G-tube was the primary concern. Prior to leaving, Jackson had to be up to his normal intake of formula. And this took days. Not because it had to, but because there was so much miscommunication between the doctors and the nurses, everything took much longer than it needed to. And meanwhile Jackson is not getting any rest. We just wanted to get him home where we could take care of him.

Well, long story short (or not so short), we arrived home Monday to a very clean house thanks to my Mom. And the saga continues...