Travels with Jackson

4 Years Old

2012-01-06T09:30:00.003-06:00

One of my resolutions for 2012 is to blog again about my beautiful Jackson. Wow... has he changed our lives. Every year that goes by I am amazed at the beauty I see in my firstborn son. He loves life! He loves people! He loves... And he's not ashamed to show it! (If you've ever met Jackson, you know what I'm talking about.)

I fight tears every time I think of how he entered this world... I watch the video we made for him and find myself sobbing by the end. What an amazing boy. What a gift. What a beautiful glimpse into this imperfect life that we live... but how so much beauty can be found in its imperfection.

Jackson turns 4 tomorrow. And I couldn't be more thankful for the boy that made me a mother. He has changed me. Made me better. Made me stronger. And made me open my eyes to the beauty that surrounds me every day if I just open my heart.

I love you, Jackson. Happy 4th Birthday!

Thanksgiving 2010

2010-11-30T17:45:00.000-06:00

Thanksgiving 2010... Our first with two kids! It has definitely been a challenging month balancing a newborn and an almost 3 year old, but we love our boys!

Whittington, Combs & Cokendolpher family Thanksgiving

Jackson at the Christmas tree lot

Jackson (almost 3)

Jackson & Daddy rockin out!

Cash (1 month)

Cash is here!

2010-10-30T17:55:00.000-05:00

Greyson "Cash" Whittington was born on 10.25.10 at 7:42 a.m. 8 lbs. 3 oz. 19.5 inches! Jackson is officially a big brother!

The Whittington boys!

Jackson loves to sing...

2010-08-16T15:15:00.000-05:00

I seriously LOVE this:

"Life doesn't always go as planned. Help others anyway."

2010-05-03T10:45:00.004-05:00

Some of you may remember this post where I mentioned Bella and her mom, Jenny. Jenny is a mom friend I found through the blogging world, and Bella, like Jackson, was born with a bilateral cleft lip and palate. It's wonderful to find someone in the world who can relate to what you are walking through (mountains of surgeries, doctors appointments and therapy). It somehow makes the world not feel as completely lonely and isolating. I have been thankful for Jenny; from the occasional email to blog comments, I have found a friend, someone to vent with or to laugh with at the crazy things people can say.

I have just been introduced to Life Rearranged. For more about what Life Rearranged is all about, see F.A.Q.'s. Every 2 weeks, Jeannett from Life Rearranged hosts a guest blogger. This blogging mama will share her story and choose a charity to fundraise for. It just so happens that Jenny is today's guest blogger and Jenny has chosen Jackson's Smile! On top of that, there's a giveaway with 2 winners! I was considering posting the whole blog post here because it's just that good, but I really want ya'll to see what Life Rearranged is all about. So I'm just going to post the first bit of Jenny's post, so if you want to finish reading, you'll have to go HERE.

*****

{Jenny Fugler} Love at First Sight

I was in college when I saw a woman whom I considered truly ugly. Her face was grotesquely deformed and discolored; her hair, unruly and frizzed out; her skin complexion was bumpy and dry. I never knew her, we just happened to be studying at the same bookshop downtown. Unable to keep from staring from a distance, I felt such deep pity, as I could only imagine what her life must be like: solitude, no prospective husband or life with children, rude stares and comments undeniably. For the first time in my life, I asked God sincerely, “Why would You make someone suffer through life that way? If You could have prevented her deformities, which You could have, why didn’t You?” The question burned in the back of my mind for the next couple days. What was the point in allowing deformities and sickness and diseases invade our bodies? Wouldn’t it just be easier, less hurtful, if everyone could be normal and beautiful, or at least simple to look at? Another rendition of the age-old question, “If God is good, then why does He permit evil?”

Fast forward three years. My husband and I sit in the doctor’s office at Maternal Fetal Medicine, waiting to hear the news if indeed our in-utero daughter has developed a cleft lip and palate, or not...

*****

Thank you Jenny and Jeannett for sharing your lives with us.

More Pics

2010-05-01T16:55:00.000-05:00

Just a few more pics of our boy...

Also, Daddy's albums release today! Check 'em out!

Recovery

2010-04-29T13:01:00.002-05:00

So far recovery is going fairly smoothly. We are constantly amazed by our boy. He is one tough kid. We are one week down on the puree diet, one week to go. This, honestly, has been the hardest part of recovery. Jackson is an eater. He LOVES to eat. So keeping him from his favorite foods has been a chore, but we're making it through.

And we're looking forward to the results of this surgery. His palate will be officially closed, so we're hoping his speech will begin to improve. Thanks for keeping up with us!

Jackson on the Deck from Halle Whittington on Vimeo.

Surgery Day

2010-04-23T21:15:00.005-05:00

Today was long, but we're having a great experience at Dell overall. I'm posting pictures to keep you updated on things as we go.

The photos start right before we handed Jackson off the the surgeons and resume after he was in recovery up to when he started really getting aware again. It's absolutely incredible how fast kids adjust.

He's doing good now, just really fussy and easily upset. I'm sure he's in pain, but the morphine is holding off the worst of it. We should be able to go home tomorrow or Sunday!

Jackson the Day Before Fistula Surgery

2010-04-22T21:30:00.004-05:00

Daniel here. I'm hacking into the account to post a few pics of Jackson the night before his fistula surgery. It's going to be a rough few weeks, but at least you can see the before and after!

Video to follow

CA Trip & Jackson's Smile Art Benefit

2009-11-12T11:30:00.004-06:00

(photo by cameron ingalls)

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)

Halloween 2009

2009-10-31T16:00:00.004-05:00

Our little firefighter...

We're getting ready for a night of trick-or-treating, enjoying the company of new friends, then catching the end of the UT game as they take on the Oklahoma State Cowboys! Happy Halloween!

Little Adventurer

2009-10-23T11:45:00.001-05:00

Our little man is a little adventurer. He loves the outdoors, loves exploring things, and would go off discovering things on his own if it weren't for the careful watch of his exhausted Mama.

Today I asked if he wanted to come along to drop off the Netflix in the mailbox. Of course he did! He's pretty good about holding my hand until I let him run on his own for a bit. And he's pretty good about knowing not to go into the street on his own. Today, however, his curiosity got the better of him. When we got back from the mailbox, Jackson decided he didn't want to come back inside. So, thinking that if I said goodbye and started closing the door, he would (as usual) start crying and bang on the door until I opened it. Not today. I quietly opened the door up to see what he was doing. He had already run out into the middle of the street off on his own adventure (thankfully, we have a pretty safe street)! I have no idea what was going on in his mind as he wandered into the great unknown... Where did he think he was going? When would he have stopped? Or would he? I often wonder what goes on in the mind of my little adventurer.

Needless to say, I scooped him up and brought him right inside, put him in time out and then gave him a good talking to. Don't know if it worked. I'm pretty sure it'll happen again. Probably many more times before he learns to listen to his Mama. I, on the other hand, will not be quite so trusting of him in the meantime.

A glimpse of the laughter and life Jackson brings to our house:

Tickling Jackson from Halle Whittington on Vimeo.

We're back!

2009-10-01T10:40:00.001-05:00

Sorry it has been so long... 3 months to be more exact! Sheesh. Sometimes life just gets the better of me. And with so much going on, tons of things that I'm sorting through, I just haven't had the energy or focus to write about our life as of late.

So many changes... The best news is that Jackson got his G-tube removed today! Yay! This has been a long time coming. He's finally drinking on his own and loving it! We put Daniel on a flight to California then headed over to the surgery center at 9 a.m. this morning. The doctor took it out, put an enormous bandage on it and gave us a follow-up appointment for October 29th. I guess they give it some time to see if the hole will heal up on its own prior to repairing it surgically. So we'll see how it goes. Supposedly, it'll leak a lot for the first couple days then gradually get better. We're just so happy to be done with this season and ready to move on to new things.

Daniel will be in San Luis Obispo for the next 12 days, playing lots of shows and celebrating the wedding of one of our good friends! Congrats Tim and Annie!

I'll be here with my boy. News on my end is that I just took a part-time job working for West Elm in downtown Austin. It's been a lot of fun so far and I'm making some good friends! It's been good for me to get out and we could really use the bit of extra cash flow, if you know what I mean.

Jackson just gets more and more fun... He has the biggest appetite that I've ever seen in a kid his age! For example, one morning he ate two pancakes, a half banana, handful of blueberries, a kolache and a cup of milk. Goodness. He most definitely eats more than me! He constantly has a couple cars in his hands and drives them all over our house. He is still extremely social! He just can't get enough of people. But he's also VERY independent and focused. I am loving seeing more and more of his personality. He is such a happy kid... always has a smile on his face! I just adore him.

As far as me, I've been on quite a journey the past few months. I can talk about that more later, but I am making some good and necessary changes. Jackson and I will be in California to visit from November 3-10. I'm looking forward to catching up with some familiar faces and spending time in some of my favorite coastal spots.

Our camera is still out of commission, so hopefully we'll have some pics to post soon! Till then...

4th of July/Other News

2009-07-06T10:15:00.004-05:00

We had a great 4th! It started out with the annual Maple Run Neighborhood Parade... We joined in the festivities along with family and friends.

A fire truck led the parade and stuck around afterward so the kiddos could check it out. Jackson LOVED it! He's a big fan of any type of truck - here's the evidence!

We then had a great BBQ with Daniel's family, complete with hamburgers, hot dogs, corn on the cob, fruit salad... you get the idea. We were going to end the day with fireworks, however, Daniel wasn't feeling great and yesterday found out he has bronchitis - sweet. Oh well. We'll try again next year.

----------
We got a call this morning from Jackson's geneticist. As you may remember, Jackson has routine abdomen ultrasounds done every 3 months. He had the first one at the end of March, then he had one recently in June. This recent one showed unusual growth in a few places, including his lymph nodes and spleen. We are going in to see the oncologist this afternoon, since tumor growth is highly associated with SGBS. Please keep us in your thoughts and prayers.

Progress

2009-07-03T21:35:00.000-05:00

We almost have a walker on our hands...

Jackson Walking from Halle Whittington on Vimeo.

Genetics

2009-06-26T17:30:00.000-05:00

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 blog, you may have noticed the numerous tests that have been run in the past few months. Here's just a few of those tests:

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.)

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.

Happy Father's Day!

2009-06-21T21:30:00.006-05:00

To the best possible Dad there could ever be for Jackson...

We love you forever.

Mr. Social

2009-06-12T13:05:00.004-05:00

There's really no better way to describe him. Jackson could eat, sleep and breathe people. It makes it easy on us when we want to go out because he never gets fussy. He is constantly entertained by all the people; people walking their dogs, people talking, people eating. It doesn't matter. I have a really hard time keeping him entertained during the day since it's just me and him at home. But when we're out, he's in heaven. He loves his stroller. He loves his car seat. I have to be careful not to say "bye bye" too early, or he will start heading for the door and pound on it until we leave. I have to have everything in hand before I even think of uttering the words.

So, yes, he is wildly social. Combine that with his explorer spirit, and quirky personality; he definitely keeps us on our toes!

The other day while I was sitting in the waiting room of Kid Therapy, Jackson's speech therapist approached me saying just how social he is; he waves and says hi to all the kids, is always smiling, and is the highlight of her day. I can't tell you how much I love to hear things like that! Then later, his occupational therapist told me the same thing, and shared a story with me of when Jackson was playing in the gym there. Another little boy climbed up a ramp and Jackson clapped for him when he got to the top, then climbed up the ramp himself! She said how much the other kids and therapists just love him and what a fun, sweet boy he is.

It has been such a rough road so far, hearing these things about Jackson bring the life back to me. It's as if every time I hear it, my lungs fill with air, my heart beats a little bit faster and my eyes see a little more clearly. The clouds break and life feels worth living again.

I love that he loves people. I love that he lights up when other kids come into the room. I love that he makes me laugh about a hundred times a day. I love that he makes himself laugh just as much. I love my boy.

17 Months

2009-06-07T18:10:00.000-05:00

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

2009-06-02T20:20:00.000-05:00

I have been on a bit of a blogging hiatus. Between being sick, once with the stomach flu, then with a nasty respiratory virus, the words have just been sucked out of me.

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 (thanks Nana and Granddad)!

Someone takes after his Daddy a bit...

Jackson and 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.

Twice Tagged

2009-04-28T23:55:00.000-05:00

So... yeah. I've been tagged. Twice. By Emery. And Anne.

Here are the rules:
Take a photo of yourself as soon as you see you've been tagged. You're not allowed to primp or "aquanet" or grab your nearest BumpIt (as stated by Emery).

Now you know what I really look like at the end of the day... Sweet.

I now tag:

Joy
Amanda (aka Wig)
Becca
Jenny
Allegra
Sarah
Natalie

So there.

A Day In The Life...

2009-04-23T22:30:00.000-05:00

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.

Find a Smile

2009-04-01T22:47:00.003-05:00

The other day I heard Daniel laughing from the other room... He yelled for me and I came running with camera in hand! This is what I found:

New Moves from Halle Whittington on Vimeo.

Such a little ham!

And then the other morning I witnessed this:

Beatnick Jackson from Halle Whittington on Vimeo.

Our very own musician in the making.

Jackson's personality is coming alive more and more... This boy really knows how to put a smile on my face. Even after hours of tests, and being poked and maneuvered, I am amazed that he can still find a smile. He reminds me that no matter what we face from day to day, hope is only a smile away.

A Picture Is Worth A Thousand Words...

2009-03-28T18:00:00.001-05:00

Sideways Jackson from Halle Whittington on Vimeo.

(This video was filmed sideways, and for the life of me, I couldn't figure out how to flip it.)

Austin Adventures

2009-03-27T12:55:00.002-05:00

Sorry it has been so long... Honestly, I have been so tired and haven't had the words in me. Between adjusting to Texas life, Jackson's numerous doctors appointments, not to mention him being sick with 101.5 fevers for 4 days, life has just gotten the better of me.

We still have a lot to do, but here are a few pics of our house:

We are absolutely loving the space!

Jackson had his first Craniofacial Team appointment at Dell Children's on Monday, February 23rd and we couldn't be happier! We finally feel that Jackson is in good hands. There have been many unknowns up to this point with his syndrome diagnosis and he is beginning to get the follow up we have been wanting. And it's such a relief that all his appointments are right here in Austin.

We saw the ENT doctor this morning. Jackson will most likely need a new tube in his left ear as it has moved out of position thus causing some hearing issues. He screamed the entire time the doctor was trying to look in his ears, so much so that he started to hyperventilate. When the doctor was finished, he just glared at him in between catching his breath and whimpering. I feel bad for him; he's got to be so sick of people messing with him. When we drove to the appointment, it was sunny outside... By the time we were leaving, it was POURING! I wasn't at all prepared, so I snuggled Jackson up to me and made a run for the car. Needless to say, we both got soaked. Now it's sunny and 80 degrees outside. Go figure. The weather here is totally schizophrenic...

Monday we see the Genetics doctor. Wednesday we see the GI doctor. And the following week we see Jackson's new pediatrician. Phew.

Jackson is crawling all over the place now and pulling himself up onto things. A couple weeks ago, Daniel's sister Sarah let us borrow a few Baby Einstein DVDs. I was hesitant at first, but put one in. Jackson sat in front of it the whole time and I have never seen him laugh so hard (except when we tickle him)! It takes everything in me not to burst out laughing! It seriously is so cute. But then he figured out how to turn on the TV - a big no no. He'll turn it on and then clap and get excited. Anyone have tips for not laughing at your kids when they disobey? It just kills me.

We have a swing in the backyard that Jackson loves! It was pretty hot out the other day so Jackson decided to hide under his sheriff cowboy hat...

Classic.

Happy Valentines Day!

2009-02-14T22:55:00.000-06:00

Will you be my Valentine?

With love,
Jackson

Jackson's Smile: Give the gift of smile; buy a photograph!

2009-02-11T13:45:00.002-06:00

One of the side effects of Jackson's syndrome and all the medical issues he has dealt with since birth are the overwhelming medical bills. We have been inundated with medical bills for over a year now. Without insurance and the generous financial gifts we have received from others throughout this past year, Jackson's medical expenses would total over one million dollars to date.

Daniel and I have tried to stay positive throughout this past year, all the while getting deeper and deeper in debt because of all the medical care Jackson's condition necessitates. As some of you may remember, we moved in with my parents last April so we could put a dent in some of the debt we had accrued since Jackson's birth, which we were able to do. However, no matter how much we are able to pay off, it seems there is always another bill coming in. We just can't seem to stay afloat. Because of this, one of the primary reasons for moving to Texas was the lower cost of living. We just couldn't keep up living on the Central Coast, regardless of how much we loved living in such a beautiful place.

One of our good friends, Cameron Ingalls, is a renowned photographer. He has known of our financial situation, and together with his wife, Anna, came up with Jackson's Smile. Jackson's Smile is a coalition of photographic artists dedicated to giving Jackson, and others like him*, some of their most precious resources; their time, money, and talent. Each month beautiful photographs will be featured, donated by incredible photographers, to raise money to offset Jackson's medical bills; "to give Jackson the gift of his smile."

We are so grateful for our friends, Cameron and Anna. And for all of you who have been our support system over the past year or so.

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

Jackson is crawling!

2009-02-05T15:45:00.000-06:00

This is huge. It has been a long time coming. Jackson is finally crawling! We have been so excited and he is enjoying new levels of independence.

So I have attempted to film it. The story behind the two videos...

Jackson loves anything technological and anything belonging to anyone but himself, meaning cell phones, computers and cameras specifically. So I tried to video him crawling the first time and soon discovered his crawling was motivated by his desire for the camera. He worked so hard to get to it and then Mommy wouldn't let him have it. Such a mean Mommy. Thus this first video:

Crawling & The Camera Dilemma from Halle Whittington on Vimeo.

Later on, Daddy was encouraging him to crawl, so I tried to capture it yet again. Needless to say, it was a bit dark in the room. I hope you can catch the gymnastics Jackson throws in there. It's pretty classic.

Crawling! from Halle Whittington on Vimeo.

We have so much more to update but that will have to wait till next time! But I will say this... We are loving Austin thus far!

Austin, Texas

2009-01-26T10:20:00.000-06:00

Our new address:

4502 Velasco Place
Austin, TX 78749

We have been crazy busy packing, loading, traveling, unloading, and unpacking... We are mostly settled in now and are attempting a few minor updates to the house. For now, here's what it looks like from the outside:

More to come...

Happy 1st Birthday Baby!

2009-01-07T11:30:00.000-06:00

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

2009-01-06T17:35:00.003-06:00

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 Simpson Golabi Behmel Syndrome (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.

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.

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.

Holiday Recap

2009-01-06T00:35:00.000-06:00

The holidays have kept us busy this year...

In early December, on a lovely Saturday evening, we headed out with the Caldwells to Holloway's Christmas Trees! Daniel and I have made this a tradition since we were married in 2005, but this was Jackson's 1st Christmas Tree excursion. As you can tell, we had loads of fun!

Roasting marshmallows...

Riding in wagons...

Driving tractors...

All by ourselves... (sshhh... don't tell him I'm still holding on!)

And came back with a beautiful tree!

Jackson even had his very own ornament!

We enjoyed lovely Christmas parties at the homes of the Siems and Caldwells - thank you! And even a caroling party at my cousin's house and neighborhood! There's a bit of a funny (and a bit humiliating) story with that one... Well, let's just say I felt so confident we were at my cousin's home, I walked right on in! Only to discover that their house was a few doors down... I apologized profusely and wished them a Merry Christmas! Thankfully, they were very gracious. Oh well...

We spent Christmas Eve with my family - my Mom has a lovely tradition and makes delicious "Christmas Eve Soup" every year! I'll have to carry on your tradition in Texas, Mom!

GeeGee Wright and Nana

Great Grandpa Trine

And then we enjoyed Christmas morning together as a family - Jackson's 1st Christmas! We kept it simple this year and bought Jackson only one present along with a few treats in his stocking!

It's a...

New Tonka truck!

As you can see, he loved the paper more than the present!

We rang in the New Year with the Caldwells and the Barkers! Happy 2009! Only a couple days till Jackson is 1!!!

Christmas 2008

2008-12-26T00:30:00.000-06:00

Merry Christmas To All And To All A Goodnight...

Coffee and Lemonade

2008-12-10T20:45:00.000-06:00

So... this is the latest development! Two weeks following Jackson's palate surgery we were able to start him back on solid foods again. I decided to try his usual oatmeal but with apple juice this time... and he loved it and gobbled it down in 10 minutes! Afterwards I thought I'd try a bit of juice in his sippy cup and see how it went. Initially I had to hold it for him, while he tried to figure it out. Then he started to get it and want to do it HIMSELF. Then the other night, this happened:

Drinking while Sleeping from Halle Whittington on Vimeo.

I have seen babies fall asleep while drinking before, but Jackson has NEVER done it because he has NEVER been able to take any liquid from anything. And we have tried EVERYTHING! So when we observed this the other night, we had to capture it. I can't tell you how excited it has made me! He can only take little bits from it right now, but he's getting it... and that makes me SO HAPPY!

In other news... Today is my sister's 29th birthday! Happy Birthday Anne (aka Bear Bear)! I love you!

Also, I met the most amazing woman today along with her beautiful girl, Bella. Bella is 3 months old and was also born with a bilateral cleft lip and palate. We found each other through the blogging world and were finally able to meet up today over coffee and lemonade. I can't even express what it feels like to talk with someone that understands much of what we are walking through and knows what it is like to be a first-time mother in the way that I do. Jenny, you are such an incredible mother and I am so thankful for you.

What a beautiful day...

11 Months Old

2008-12-07T13:15:00.001-06:00

It is unbelievable to me that it was nearly a year ago that Jackson entered this world. Like I mentioned in a previous post, the emotions are heavy at times. So many memories. I was on bed rest at this point in time last year, trying to make sure Jackson didn't come too soon. If you didn't see pictures of me prior to delivering, here are a few my friend Monique took:

Now keep in mind these were taken right before I went into the hospital at 32.5 weeks! Right before the C-section, my doctor wanted to take a fundal height measurement to see how big I was. (For those of you who didn't know, I had excess amniotic fluid, also known as polyhydramnios. And excess was no understatement.) Typically, a woman measures 40cm at 40 weeks. At 34 weeks, I measured 55cm - the size of a woman having triplets. Crazy. And, honestly, not very cute. (At least in my estimation.)

Well, here is our boy at 11 months! He is recovering really well from surgery, getting better day by day.

We are so grateful for all of those people who showed us love and support when we arrived home from his surgery. Thank you to the Caldwells, Soderins, Eckerts, Sisemores, Siems and the Bradshaws for the amazing meals! We love you all.

Jackson loves books.

However, we're trying to teach him that loving them does not mean eating them...

We just love that hair! Correction: I love it, and well, Daniel is just jealous...

CHLA Post Op

2008-12-05T12:40:00.000-06:00

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

2008-12-04T22:20:00.000-06:00

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...

Jackson's Last Supper

2008-11-15T14:55:00.001-06:00

The night before Jackson's palate surgery, our awesome family took us out to eat at a Brazilian restaurant close to the hospital. Yum!

The food was awesome, the company brilliant and our next-table neighbor was Jackson's new friend.

Here is the video from that night:

Last Supper from Halle Whittington on Vimeo.

Notes From Neighbors

2008-11-12T23:46:00.000-06:00

We've all gotten them. The "can you please not fill up the trash can before others are able to use it" note or the "can you please not block my mailbox with your car" note. But, I'll bet you've never gotten a note like this.

Yesterday when we checked into the Ronald Mcdonald house, I loaded our stuff into our room and then we went out to dinner. When we got back this was under our door.

Yeah, totally. I'll bet even YOU feel bad now. And you didn't even get the note.

-daniel

p.s. on a side note... did you ever realize how LOUD brushing your teeth is?

The Tube

2008-11-11T09:25:00.000-06:00

For the past 10 months, we have putting been this tube down into Jackson's stomach for every feeding. We mentioned capturing a bit of this process as he will be getting a G-tube tomorrow. Here is the proof (Oh, and I can guess what you're thinking... Wow, Halle is wearing STRIPED pants! Yes, but it was nearing bedtime and I was in my comfy Pj's. Perfectly acceptable.)...

The Tube from Halle Whittington on Vimeo.

We leave today at 1pm to drive down to LA. We will be staying in the Ronald McDonald House throughout Jackson's stay, well, at least one of us, while the other stays with him in the hospital. We could be there till Saturday or possibly Sunday. We will see. Please continue to keep us in your thoughts and prayers.

Music, Monkey and Memories

2008-11-07T13:35:00.000-06:00

There have been a lot of things going on in the Whittington house as of late. Some worthy of mentioning, others not so much.

First off... Jackson is 10 months old today! I can't even believe we are only two months shy of a year. The memories seem to haunt me these days. I can't go through a day without being reminded of last year somehow.

It must be that EVERYWHERE it's starting to feel like the holidays... EVERYWHERE specifically referring to Starbucks and Peet's, but still... I LOVE the holidays! I start feeling all ooey gooey inside (just ask Daniel).

But last year was so different. I was on bedrest from the beginning of December. I spent the entire month there, well, until I finally got admitted to Sierra Vista on December 28th (after a solid month of contractions every 30 seconds to 5 minutes). My family joined me at our house last year for Christmas while I lie on the couch trying to get in the holiday spirit. I feel like I missed last year's holiday season, so I'm trying to enjoy this one as much as possible. And now I have a little companion to share it with.

That all to say, the memories are flooding back. And they're a bit overwhelming at times. It feels as though the pain rushes in, crashing down on me, then departs much like an ocean wave. This past year has been one of the hardest of my life. And now our sweet, broken baby is nearing the ripe old age of one...

Jackson is growing and changing so much right now. He just started rolling over, and now he ROLLS all over the house. It is really quite funny. He's one fast roller! He's also getting better at sitting up. This has been a long time coming, and we are so proud of his progress. He is also getting really tall and weighs about 22 lbs. He is one solid boy.

And he absolutely LOVES people! He will smile and try to engage anyone who comes to our house. In fact, last week the keyboard repair guy came over. The whole time Jackson was trying to get his attention... smiling, talking, rolling towards him. Unfortunately, the repair guy was too busy repairing to notice him. I felt a bit sad for a minute, until I realized Jackson wasn't a bit discouraged. He was just trying harder! And he does this, whether we're in the grocery store, the coffee shop, wherever we are. His sweet yet feisty spirit makes this mom's heart melt.

His palate surgery is set for Wednesday, November 12th, less than a week away. He will also get a G-tube in at the same time. We have been putting a tube down his throat for almost 10 months, and, as you can probably imagine, Jackson is not a big fan. But, thankfully, we have been able to get him enough food and keep him thriving through the OG tube. We are going to try to capture the process of tube feeding, as a type of memoire of the way he had to eat for his first 10 months of life. If and when we do that, we'll make sure to share it here.

Jackson is getting better at eating some solids. So far, he is a huge fan of sweet potatoes, carrots, winter squash, and of course cereal. He is not so much the fan of fruit at this point in time. Crazy, I know. But we just started yogurt, and he LOVES it! In fact, he has gotten mad at me the past couple days when I have put it away. Oh yeah, that brings me to another new thing...

Jackson has been throwing fits! The other day he was playing with a toy piano he has, one of his favorites at the moment. He was lying on his side, playing with it, when I noticed him start to get frustrated. I'm not entirely sure what he was trying to get it to do, but he started yelling at it and pounding on it... HARD. Then, all of a sudden, he threw himself onto his back, and started yelling while slamming his hands and stomping his feet on the ground. I watched in amazement, until it was over, and then I just started laughing. It was just the funniest thing to watch an almost 10 month old do. He definitely has a mind of his own! And we're seeing that more and more these days.

Just a couple recaps... We had a fun Halloween! Jackson was a monkey. I had that planned for awhile, as I thought he would make a perfect little monkey. Then a bit later, we added this:

Every monkey needs a Man in the Yellow Hat!

We spent the evening with our friends and their sweet boy Stewart, who was born the same week as Jackson. Stewie was the cutest little Superman EVER! We had a great time walking around their neighborhood, eating homemade caramel popcorn and yummy chili and sitting around sharing stories.

In other news, Daniel is working on a new recording and has asked ME to play keys on it! This has been a very challenging and yet fun experience thus far. It has been a bit of a whole family experience, as we have been taking Jackson to practices. He sits in his chair with his bright orange earplugs, and listens to the music. He loves it! I think we have a musician in the making...

Blog Action Day - Poverty

2008-10-15T13:30:00.000-05:00

Poverty. Truth be told, it wasn't until I was in high school that my eyes began to open to the world around me. But when reality hit, it hit hard.

I remember one specific day. Who would've guessed that what came in the mail that day would change my life and my heart forever.

I was flipping through my monthly Brio Magazine when I noticed an insert I hadn't seen before. Teen Missions. I started reading it. I soon found myself fighting back tears as I read about AIDS orphans and street children in Zimbabwe. I knew I had to go. I had to see. I had to help.

Fast forward 6 months. I found myself on a plane with 30+ teammates. On a Balkan Airlines flight that would layover in Sofia, Bulgaria prior to landing in Johannesburg, South Africa. I still remember the sunrise through the airplane window as we descended over South Africa - breathtaking.

After landing in Johannesburg, we boarded a bus headed for a small village in Zimbabwe. Outside the bus windows as we drove, giraffe browsed the surrounding trees while a herd of buffalo grazed the grasslands beyond.

We spent 3 months in this Zimbabwean village. We focused most of our time on building the foundation for an AIDS Orphanage. What amazed me at the time was that whenever we were out there working, it felt as if the whole village would come out to help. Children would watch from outside the building perimeter.

Every Sunday we would walk to church with the nationals. The day when two of the local children took my hands as we walked will be forever ingrained in my memory.

The warmth and kindness of the people gripped my heart. Their smiles. Their love for one another. The way they cared for each others children as their own. How the way their voices carried into the night as I lie in my tent brought me to tears every time. Compared to what I had, they had so little. But whenever I heard them ask God for anything, it was more mercy, grace and compassion. Something I could use a lesson or two in.

I went to help. But instead, I was the one who needed help. I needed my eyes opened. My heart widened. My reality questioned.

Ever since my heart has ached. I can't get these people out of my head. The children living on the streets with little to eat, drink. No roof over their heads. Parents unable to provide sustenance for their children no matter how hard they work. A disease that plagues the nation. But what can one person do?

I have huge dreams. I love the ONE Campaign. I dream of one day working in Africa, fighting for such a cause. I dream of one day adopting a child from Africa. But where do I start?

Daniel and I made a decision last year. We don't want to be the kind of people that say, "One day, when we have enough money, we will do something about poverty in the world." Because the truth is, if we aren't living it now, who's to say we will when we are in a better financial situation? So we make small decisions. One by one. Decisions that put our money where our heart is. Even if it costs us. One of these decisions is to sponsor this sweet Rwandan boy with Compassion International who loves to play soccer and marbles and sing songs.

It's the small things we do each day, each month, each year that can make a big difference. We hope that the decisions we make in how we choose to live our lives now will shape the way Jackson sees the world. And that he too, one day, will choose to make a difference.

9 Months and Other Stuff

2008-10-08T00:55:00.000-05:00

So we found out yesterday afternoon that Jackson's surgery has been postponed until November 12th. We were really hoping for him to be well on his way to healing prior to the holidays, but it looks like the recovery process will be more right smack dab in the middle of the hustle and bustle. Oh well... (I find myself saying that over and over these days. Hmmm... Maybe I should find a new thing to say? Ideas?)

On a lighter note... Jackson is 9 months old today! While at the doctor's office yesterday, they decided to weigh him just to find out where he's at. Our boy weighed in at a healthy 20.5 lbs! Yes, you read that right! I was wondering why my arm has been hurting. Daniel and I are a bit intimidated by the fact that one day Jackson will most likely be towering over us...

We just started fruits and vegetables. The unfortunate thing about open palates - everything comes through the nose, not to mention ending up all over his face in general.

I can't resist these dimples...

Surgery Postponement

2008-10-06T14:55:00.000-05:00

As many of you know, Jackson was scheduled for palate surgery this Wednesday. Unfortunately, Jackson woke up sick today with an upper respiratory infection. He was put on antibiotics, but as any type of respiratory illness amplifies the risks of anethesiology, it is highly likely that his surgery will be rescheduled. We called CHLA today, and we are supposed to hear back this afternoon in regards to whether or not we will move forward. This is very disappointing for us, but also important that we take every necessary precaution. Thank you for keeping us in your thoughts and prayers.

"I'm gonna get you..."

2008-09-29T21:55:00.000-05:00

This is Jackson's new thing, and we find it hilarious. He somehow learned how to shake his head, and now does it ALL the time. (Sorry about the video quality.)

"I'm gonna get you..." from Halle Whittington on Vimeo.

Swim Lessons

2008-09-25T17:25:00.000-05:00

Ever since I dreamed about having kids one day, I knew that I would want them to feel comfortable and confident in the water. Although the fact that Jackson needed tubes in his ears posed an obstacle to this desire, I still tried to find a way to make it work.

Initially when I found out Jackson would need tubes in his ears, I was disappointed as I had heard that it wouldn't be possible for him to go swimming or go under water. I talked to a few different ENTs that have worked with Jackson and they said that as long as I put wax ear plugs in his ears, covering the opening, he should be fine to swim. I was thrilled and anxiously looked for ways to get him in the water.

When one of our good friends, Amanda, invited us to participate in swim lessons at Sinsheimer, we eagerly accepted! Little did we know that not only Amanda and her sweet boy, Stewart, would be there, but when we arrived, some of our other friends were there! And we even made a few more fun friends during those weeks. Thank you to all those who made swim lessons a blast for us! We loved our time with you.

... And as it turns out, our little boy LOVES the water!

Oh, and let's not forget, his bright orange ear plugs!

September

2008-09-12T13:10:00.000-05:00

The month of September is many things for us. One, it's our anniversary month. We've been married 3 years. Two, it's my birthday month. I turn 30 tomorrow! This is a hard birthday for me to wrap my head around.

In September we also remember 9/11. May we never forget...

September is also the month of awareness for two causes very close to my heart:

National Craniofacial Acceptance Month
Ever since Jackson was diagnosed with a bilateral cleft lip and palate, my eyes have been opened to children with facial differences. Something has changed in me. And has allowed these faces to open my heart still wider.

National Childhood Cancer Awareness Month
As many of you know, my family lost my brother Gabriel to Leukemia in 1990. He was 6 years old. This year, founded by a mom inspired by her son's fight against cancer, cookies for kids' cancer was launched.

"May God break my heart so completely that the whole world falls in."

Fake Cough

2008-09-10T23:45:00.000-05:00

Ever since Jackson was sick with a cough, he somehow figured out how he could pretend to cough and get our attention... Funny kid.

Fake Cough from Halle Whittington on Vimeo.

Craniofacial Team & The South County Life

2008-09-08T00:00:00.001-05:00

Having just arrived back in California on Sunday evening, July 27th, from Austin, you'd think we'd take it easy for a bit... You know, settle back in, those kind of things.

Well, if you know my husband, life never quite settles down. Monday morning we were in full force search-for-the-new-place mode. As you might remember, my parents had graciously opened their home to us for a few months while we attempted to pay off some of the looming medical debt we had acquired since Jackson entered this world.

Long story short, by Wednesday the search was over and we were set to move into our new place in Grover Beach on Saturday (thanks to the help of our fine friends Tim, Travis, and Los Dos Ryans, you know who you are)! Yeah, talk about fast! And let me not forget to mention that Jackson had his first Craniofacial Team appointment on Thursday, July 31st at Childrens Hospital LA. Needless to say, all of this made for one crazy week.

Well, we left that same Wednesday evening and drove down to stay with my Aunt Mary and Uncle Denny (Jackson knows them as Aunt Mary The Great and Uncle Denny The Great!), who live fairly close to CHLA. We thoroughly enjoyed our evening with them; we even had the luxury of sharing in their hot tub. When we got up early the following morning, the coffee was already brewed and ready for us and we left their house with cups in hand. Thank you for your hospitality!

We weren't quite sure what to expect at Jackson's first Craniofacial Team appointment. We arrived a bit before 8, checked in, and entered the waiting room, filled with other cleft-affected kids and their families. Little did we know then that we would spend the majority of the day in waiting rooms!

We saw many people that day; social worker, geneticist, audiologist, speech pathologist, ENT, and his plastic surgeon. Eventually, a dentist and orthodontist will join his team.

This was our first time talking with a geneticist. Due to the rarity and possible severity of Jackson's syndrome, it has been recommended to us to pursue further genetics testing. There are two main forms of Simpson Golabi Behmel Syndrome (SGBS), one of which is more severe than the other. We will most likely have Jackson undergo testing to determine which one he has. It also looks like I will need to go through genetics testing since we know that his syndrome is X-linked recessive.

As far as other important takeaways on the day, the ENT mentioned that she was unable to see the tube in his right ear, which is not a good sign. They will most likely need to check tube placement and possibly put in a new tube during Jackson's palate surgery. Dr. Urata, his plastic surgeon, put in a booking slip for his palate surgery and we now have his next surgery date: October 8, 2008. One month out! Crazy.

We moved into our new place in Grover Beach on Saturday, August 2nd. We're loving it! And Jackson finally has his own room! There is plenty more to share from the past month and I will try to get right on it. Until then, I'll leave you a couple pics of our boy... 8 months old today. He's getting so big.

Since Jackson still has an open palate, he is unable to hold his pacifier in his mouth like most babies. He, however, figured out a way to make it work and it looks like this...

Long Time No Blog

2008-09-01T19:00:00.000-05:00

I know, I know. It's been WAY too long. But we're back with plenty of tidbits to share from the life of the Whittingtons.

So let's recap a bit. The last time we talked we were about to embark on our July Adventures. So we'll start there.

We had a blast in Austin, visiting with Daniel's family. It started out with Jackson and I making the trip out there while Daniel headed to Orlando for a work conference. Daniel helped us check our baggage in at the San Luis Obispo airport and then we were on our own. Jackson did fairly well on the flights. From SLO to LA he slept the entire way, much to my relief. The flight from LA to Austin was not so pleasant, as Jackson screamed from the time we boarded till the time they turned off the seatbelt sign. I apologized profusely and continued to try to calm him down. He finally calmed down while I was feeding him and fell asleep shortly thereafter. We were welcomed in the Austin airport by Daniel's sister, Sarah. A sight for sore eyes.

Our first days were filled with settling in and getting reacquainted with Me Me (pronounced May May), Fauxpa, Aunt Sarah, Uncle Andy and cousins Jeremiah, Caleb and Taylor. Me Me was well-prepared for us, having bought all the essentials plus some. Jackson had a swing (like the one at home), a bumbo seat, plenty of toys, and his bed set up just the way he likes it (thanks to Sarah). We felt right at home.

Our first week we spent without hubby and Daddy. We visited with cousins, took walks in the neighborhood, went swimming, shopping, experienced fast food joints we don't have here on the Central Coast (namely Sonic), ate great food (for example, Kerby Lane & Austin Java), and made cookies with Fauxpa. Oh, and the most important thing, we taught Me Me how to tube feed Jackson! Yes, you read that right! She's a rockstar.

Daniel arrived late on a Thursday night, due to delayed flights, but we somehow managed to get up early enough to head for a day of adventures at Sea World San Antonio. Daniel and I were kid-less for a day, at least that's what we call it. Me Me, since she learned how to feed Jackson, offered to take care of him while we went to Sea World. The highlight of the day was by far the Shamu show, "Believe." It was nice (and a bit weird) to spend the day without our boy, but it was a breath of fresh air for both of us, as we hadn't spend an entire day together (just us) since before Jackson was born. We went on rollercoasters, watched our nephews feed dolphins, visited with the Budweiser Clydesdales, and tasted the brews of Anheuser-Busch. On a side note, the general consensus is the best beer is free beer. But when it comes down to it, for us anyway, we'd much rather have had a cold Dr. Pepper over the crappy beer we tasted that day.

As for the rest of our trip, we were in for many more adventures. I had my first authentic Texas BBQ at Rudy's "Country Store" and Bar-B-Q. And let me just say, if you've never had it done right, you've never lived. I'm just sayin'. We also hiked in (with 4 kids!) and swam at Hamilton Pool. Good fun. On top of our many more shopping adventures, we also enjoyed many more eating adventures including fine Indian Cuisine at the ClayPit, "Mexonesian" Cuisine at Hula Hut, and Southwestern Grill at Z'Tejas. To top it off, we (minus Jackson) saw The Dark Knight in Austin's IMAX theatre, located in The Bob Bullock Texas State History Museum. Talk about gnarly.

One of the highlights of our Austin trip was Date Night City Style. We've both always loved the big city life and thanks, once again, to Me Me we were able to spend an evening together in Downtown Austin. We kicked off the night at the Elephant Room on Congress and listened to great jazz while Daniel savored his Chimay on tap and I, my Gin and Tonic. This was my first experience listening to live Jazz, and I loved it! From there we went to Lamberts - Fancy Barbecue. We headed upstairs to the bar to listen to yet more incredible live music, this time Cajun music. That, along with appetizers and cocktails, was just what the doctor ordered, along with some much needed time together.

Jackson was an amazing traveler on the trip back and we arrived home just in time to embark on some more adventures! More to come...

Happy 6 Month Birthday Jackson!

2008-07-07T15:24:00.000-05:00

I really can't believe Jackson is already 6 months old! Well, sometimes I can. It has been a LONG 6 months. But still, time is moving along and today I'm taking a moment to reflect.

Jackson, 2 days old. Our 6 pound 6 ounce sweetie:

One month old, finally home from the NICU:

2 months old, beginning the NAM procedure:

3 months old, NAM with nasal stints (we hated this):

4 months old, just out of surgery. What a trooper:

5 months old, recovering:

6 months old, our precious lil guy:

So here we are... the 6 month milestone.

Jackson, although it may not seem like it all the time, I love you. You are my lil companion, my "bubba luv", my son. I'm sorry if I get frustrated with you at times, whether it's because I have to put down that tube over and over again because you can't take a bottle, or that you get so wiggly you spill the entire bottle I just pumped for you, or you just won't go to sleep because you're a night owl like your Daddy. It's not your fault. None of this is your fault. I know the past 6 months haven't been easy for you. You have had to endure in the first months of life more than many have to face in a lifetime. And yet, you smile. You have a way of brightening up the worst of days, of making me laugh when I lose sight of what truly matters. Thank you, Jackson. I wouldn't change you for the world. I wouldn't want you to be any different than the endearingly sweet, smart little boy that you are. You make me a more broken, kind, patient, and compassionate person because of what we have to walk through together. I love you my baby son. You are perfect in my eyes.

July Adventures

2008-07-03T16:20:00.000-05:00

If you've wondered at the reason for the lack of blog posts recently, it is due to the fact that June has been a fairly boring month in the lives of the Whittingtons. Well, aside from Jackson's latest pattern of not wanting to sleep for 3 days, then catching up the next 2... I really have no idea why this is his new thing. He'll barely sleep for a few days in a row, then because he has exhausted himself, he takes the next couple days to catch up. Let's just say he slept two 10 hour nights following our last sleepless episode. Then he's back to not sleeping again.

We have, however, had the opportunity to house sit for some of our friends recently which has been nice. First for the Allshouses, now the Caldwells. We're leaving here today to pack up for the weekend. We'll be heading down to Seal Beach for the 4th and my cousin's wedding on the 5th. Then on the 10th, Jackson and I fly out to Austin to visit Daniel's family. Daniel will meet up with us following his work trip to Orlando on the 18th, and we'll fly home together on the 27th. Jackson has his craniofacial team appointment July 31st at CHLA. So it's looking like July will most likely be a more eventful month!

Just to give you a glimpse of the cuteness that's in store for us in Austin:

Hair Had a Party Dance from Sarah Combs on Vimeo.

Taylor Sitting Up from Sarah Combs on Vimeo.

Jackson can't wait to play with his cousins!

5 Months Old

2008-06-07T18:55:00.000-05:00

Where has the time gone?! Oh wait... I know EXACTLY where the time has gone. NICU to home, dirty diapers and spit up, tube feeding (still doing that, by the way) to new bottles (tried every one ever made), train rides and car trips (CHLA), surgery to recovery, acid reflux and ear infections... our lives have been very full since Jackson entered this world. Yet, in all of its glory, he is our son and we love him to pieces.

Jackson is healing really well from his lip surgery. He looks better every day. We are very happy that this season is coming to end. His recovery has been a long, grueling process.

We have also started sensory integration therapy and we believe in it! Having been born 6 weeks early, Jackson is very sensitive and very easily over-stimulated. This makes it hard to take him anywhere! New places, faces, sounds and smells throw him off. We're making progress slowly but surely. With our new brushing program, Jackson is able to relax a bit more, and enjoy his surroundings. This makes life much more bearable for us, as we enjoy being out and about, especially now that summer's here.

This past week Jackson has done a 180. We feel like we have a new kid. He smiles more, LOVES his new swing (our sanity at the moment), sleeps 7 hours a night (at least for the past few nights), and has found his voice! Oh yes, he has definitely found his voice. I personally think he takes after his Dad - the kid has lungs! It's actually quite funny.

I'll leave you with a few recent pics of Jackson, now weighing in at 13 lbs. 15 oz. and measuring 25 inches. For now he's pretty long and narrow - we'll see what genes he ends up with!

3 Weeks Post-Op

2008-05-25T13:11:00.000-05:00

We're getting thru, day by day. It's all we can do some days to survive. Jackson is currently recovering from an ear infection - babies with cleft palate are more susceptible to them. We just keep reminding ourselves that some day life will be different.

Here are a few current pics of our boy 3 weeks post-op:

He loves blankets...

So much, sometimes, that he gets himself all wrapped up in them.

First Mother's Day

2008-05-15T21:40:00.000-05:00

Mother's Day. For as long as I can remember, I have longed for the day when I would be able to call myself a mother. This Mother's Day, however, held a mix of emotions for me.

Having spent part of Friday and most of Saturday in the hospital with Jackson, I wasn't quite sure what Sunday would hold for us. I was pleasantly surprised when we found out we would be able to take our sweet boy home with us on Saturday evening. We'd be home for Mother's Day.

We woke up early as usual on Sunday morning (sleeping in no longer exists with a baby), got Jackson fed, and made sure to give him his pain meds as we did not want to end up where we were the night before. Daniel was eager for me to open my gifts; one from Jackson and one from him. Jackson bought me a gift (pretty talented lil guy considering he was in the hospital the previous couple days)! I made sure Daniel brought me my coffee prior to opening gifts - I wanted to be awake for the event.

Here's what I found inside:

Yes, you see correctly. A John Deere Salt and Pepper Set. How do you tell them apart? For one, the salt always has more holes, plus the tractor with the black steering wheel... definitely the pepper! Daniel made sure that I received my first 'useless' Mother's Day gift - you know those gifts we kids think are perfectly brilliant but really have no practical use. Daniel tells the story of how his mom once gave his grandmother a spaghetti fork - a perfect illustration.

Later on that day, I got a card from Jackson. I have a very talented 4 month old - he can write (although a bit sloppy) and spell fairly well too!

So if you happen to visit our house in the not-too-distant-future, you might just find on our table a perfectly placed set of salt and pepper shakers along with one of the cutest little boys in the world.

What A Week!

2008-05-14T17:30:00.000-05:00

This week threw us some interesting twists. Jackson, having just gone through major surgery, started out the week fairly lethargic. The doctors had prescribed Tylenol with Codeine every 6 hours which we initially followed religiously. However, Tuesday night, following his regular dose, Jackson was not falling asleep. In fact, he was awake most of the night, only sleeping in 15 minute increments. We had heard that codeine can have this opposite effect thus we decided to switch Jackson to straight Tylenol starting Wednesday morning.

Well, Wednesday started us on a downhill rollercoaster quickly headed for Disasterville. The days got progressively worse, climaxing on Friday where Jackson cried for 5 hours straight and the end to his tears were not in sight. At the five hour mark, I decided to put him in the car and take a drive (the car tends to rock Jackson to sleep). Not knowing where to go, or how long we would be in the car, I started to drive down Los Osos Valley Road toward San Luis Obispo... still not knowing where I'd end up. The tears were not letting up.

I was almost to SLO when the phone rang. Daniel had called Dr. Bravo's office - Dr. Bravo would see Jackson at 3:00pm (although he was supposed to be out of the country). Love him! I killed a bit of time at Daniel's work prior to heading down the street to try to figure out what was going wrong.

We arrived at Dr. Bravo's office. Jackson cried on the way in, in the waiting room, and in the room while we waited. Having seen Jackson that previous Monday, we found out that Jackson had lost 10 ounces... Not a good sign.

Long story short - we ended up admitting Jackson into Sierra Vista overnight. After running a bunch of tests, the doctor was pretty sure that the Tylenol and Tylenol with Codeine weren't cutting it. Poor baby was in pain. Crazy pain. How did we find this out? After a dose of Toradol and a couple doses of Morphine, our baby's disposition changed for the better. Sheesh.

We checked out of the hospital at 7:00pm Saturday, just in time for our friend's 30th birthday extravaganza and my first Mother's Day. More to come...

1000 Yard Stare

2008-05-05T09:52:00.000-05:00

Our lovely (& a bit drugged up) baby:

Dazed Jackson (after surgery) from Halle Whittington on Vimeo.

Post Surgery

2008-05-03T14:19:00.000-05:00

Here is a pic of Jackson right before we got in the car to head to LA.
One last shot of our wide smile boy with no face gear on:

The trip down to the hotel was great. We made it into LA with minimal traffic and were able to get a bit of sleep before having to be at the hospital at 6am on Thursday morning.

We spent an hour getting Jackson checked out and answering pre-op questions, and then sat with him waiting for the surgical team to show up.

5 hours later, we had our boy back and in recovery. Lip and nose fully repaired and ear tubes put in place. However.... it didn't exactly look like our boy anymore. Totally crazy.

Say hello to the new Jackson. He comes complete with arm braces, and movable limbs!

He was awesome on the ride home. He has slept almost constantly since he got out of surgery and is drugged up most of time. He breathes about 100 decibels quieter and is really mellow right now. It's taking a bit of getting used to, but hopefully he'll be getting off the medication soon, and then we'll have our boy back!

Jackson's First Video

2008-04-28T15:54:00.000-05:00

For those of you who haven't seen it, here is Jackson's first video. Make sure you have on your 3D glasses because it's a 3D video....
....

Jackson's first smiling and cooing video from Halle Whittington on Vimeo.

Not Long Now...

2008-04-26T14:10:00.001-05:00

Thursday marked Jackson's final NAM appointment. Instead of taking the train down, my mom and I ended up driving, primarily due to the fact that Jackson had 3 appointments to make, the first one at 10am.

At 10am we met with his otolaryngologist (ENT - ear, nose & throat) to discuss the placement of tubes in his ears at the same time as his lip and nose surgery. This is common practice so that they only have to administer anesthesia once. Babies with clefts have an increased risk for ear infections and the tubes lessen the risk of hearing loss.

Directly following his ENT appointment, Jackson had a physical done with a doctor from the plastic surgery team that will be performing his surgery. Typically lip & nose repair surgery is considered outpatient surgery, allowing the baby to go home the same day. It turns out, however, that since Jackson was a preemie, the anesthesiologists would like to keep him overnight for observation.

Our final appointment was at 1pm - his final NAM appointment. It is crazy to think we are almost done with the NAM process. The results have been phenomenal! Jackson started out with little to no columella (the horizontal column at the base of the nose separating the nostrils). This is common in cleft patients and can cause the nose to appear 'smashed' after the repair. The nasal stint part of the NAM process helps to stretch the columella thus allowing for a much more normal looking nose repair. Having said that, Jackson now has 5 mm of columella (6-7 mm is normal length)! Not only that, his gum line is gap-free! We are so thankful for those of you who contributed to the NAM process for Jackson - at his appointment Thursday the NAM was "PAID IN FULL". We couldn't have done this without your support.

So now we eagerly await May 1st. We will head down south after Daniel gets off work on Wednesday, check into our hotel two blocks from the hospital, and wait for the phone call that tells us what time to arrive at the hospital the next morning for his surgery. The surgery, including tube placement, is calculated to take about 4 hours, then Jackson will go into recovery. We will be waiting with him in recovery until he wakes up. He will most likely stay Thursday night in the hospital for observation and we will head home on Friday.

It's crazy to think we will never see his face again as it is now. It's the face and wide smile we've grown to know and love. But we are also excited for this next, very necessary step. Please keep us in your prayers, praying that Jackson stays healthy this week (surgery will be postponed if he gets sick), that surgery will be smooth and Jackson's recovery will be quick. We will update again following his surgery.

Thoughts on God

2008-04-18T12:35:00.000-05:00

Many people as of late have asked questions of us concerning our thoughts on God and what kind of affect what we are currently walking through has on what we believe. Daniel passed this post on to me today, and I find it communicates perfectly where we're at.

Moving

2008-04-11T08:15:00.000-05:00

Today is our last day in our beloved Shell Beach condo. We are set to move into Los Osos with my (Halle) parents tomorrow for about 6 months. My parents have been gracious enough to let us, all 3 of us, live with them so that we can work on paying off the debt we've incurred through Jackson's medical expenses in the past months, placing ourselves in a much better financial position (as well as getting much needed emotional support). Thank you Mom & Dad!

So our address as of April 12th will be:
1778 14th St.
Los Osos, CA 93402

We have been so grateful to the Schlenkers for allowing us the opportunity to rent from them the past 2+ years in the most incredibly beautiful location. So many memories. We will miss you Shell Beach.

Poop Explosion!

2008-04-09T20:46:00.000-05:00

Today was quite an eventful day for us (Mom & Jackson, that is). Why was today so eventful? Let's just say we have a very clever son. Jackson executed his first experiment in physics today, the physics of poop propulsion.

Exhibit A:

Yes, quite clever indeed. That kind of experiment makes for a hard day's work. Time for a break...

Exhibit B:

Syndrome

2008-04-07T22:35:00.001-05:00

We received some pretty intense news today. They had done a few different genetic tests on Jackson when he was in the NICU. One of them only came back recently and it turns out that Jackson has Simpson Golabi Behmel Syndrome (SGBS).

It’s hard to explain all the details (the internet can help you out on that one) but the nutshell version isn’t all that pretty.

What that means could be an extremely wide range of things. First, he has several physical symptoms of the Simpson Golabi Behmel Syndrome (SGBS) (which is why they checked for it) like the cleft lip and palate, a sacral dimple, etc. But that is all that is noticeable. He doesn’t seem to have any of the other major physical symptoms as of right now.

It could be that what he has now is the full extent of what will “present” in this case and he will be completely fine, and you’d never know.

It’s also extremely likely that he will exhibit some degree of mental retardation in the next few years as he starts to develop. Again, he might not, or it could be extreme. There’s no way to know until the time comes.

On the other side, kids with Simpson Golabi Behmel Syndrome (SGBS) have a extremely high rate of tumors (usually in the kidneys), heart arrhythmias and other major problems. It is also a possibility that he could die before he even turns 2 years old with no warning or explanation due to heart issues.

If he does only exhibit the symptoms he currently has, then we have no idea what the mortality rate and life expectancy are. We’ll know more after we meet with genetic counselors at CHLA.

This looks like another one of our familiar scenarios where we’re presented with “either he’ll be fine, or he’ll have severe mental issues and die before he’s two” extreme options.

That’s about all we know right now.

Progress

2008-04-03T23:33:00.000-05:00

So today Jackson entered the final step in the NAM process. The nasal stints were adjusted and seem to be much more comfortable as Jackson has been much happier today than he has been the entire past week. Now it's just a matter of maintaining until his surgery May 1st. We are already seeing incredible progress. Here's his current look:

Can you see him? He's hiding behind the tape.

Back when Jackson was in the NICU we guestimated what we would've owed without insurance. We were way off:

Thank you Healthy Families!

Surgery Date

2008-04-02T17:03:00.000-05:00

This has been a bit of a rough week - I think it's safe to say that Jackson hates the nasal stints. I don't blame him. How would you like your nose shoved up against your face with two prongs, creating sores on the inside of your nose? Not fun. We just keep telling ourselves that it'll be worth it in the long run, and Jackson will end up with a much better repair. In the meantime, he's pretty unhappy and much more fussy than usual. And he doesn't like to sleep alone these days, just wants to be comforted.

The good news is that we now have his first surgery date - May 1st! So we only have to endure this process for another 4 weeks. Very good news.

As far as the hernia, Jackson will most likely be having surgery in the next week. Our boy is a rockstar.

Long Day

2008-03-28T12:50:00.000-05:00

Yesterday Jackson got his nasal stints put in. The wires connect to the mouthpiece he had before come up over his top lip and are shoved up into both nostrils forcing his nose up against his face.

We now have our very own 'pig/walrus'. :)

He loves it, as you can imagine. And to top it off, Halle and Jackson arrived home from their 15 hour weekly LA train trip at about 8pm last night, and Halle discovered that Jackson had massive swelling in his groin when she was changing his diaper. We headed off to the emergency room, stopped by the front desk to get our 'frequent visitor card' stamped so we get our 13th visit free... and headed into the emergency room.

It turns out that Jackson had a hernia. After getting him back on the IV, taking blood, xrays and wrapping his lower body in an ice pack for 2 hours, they managed to actually push it back in.

Now we're scheduled to meet with a specialist on Tuesday at which point they will schedule a surgery date to repair the hole so this doesn't become a regular thing. Until then we have to keep a watchful eye to make sure it doesn't pop back out.

Ahh..... it just gets better and better.

Nasal Stints

2008-03-27T01:10:00.000-05:00

Tomorrow Jackson enters the nasal stint part of the NAM process. We found out last week that his gums are in line now - amazing! So the nasal stint process should take approximately 4 weeks and then Jackson will have his nose and lip surgery. If all goes according to plan, he should have this surgery at the beginning of May. We'll let you know when we find out his official surgery date.

We have been overwhelmed by your support of us - thank you so much for your prayers and gifts. We are blessed with incredible friends and family.

First Smile

2008-03-21T23:10:00.000-05:00

Sooo... Jackson smiled for the first time yesterday... at his toys! Yeah, that's right, not at mama who spends her every waking moment (which are quite plentiful these days) loving on her little man... My mom and I were on our way home from LA on the train and he was in his car seat. He stared at his toys very intently for awhile, then began to crack a smile that must've lasted for at least 5 solid minutes. It was the cutest thing I think I have ever seen! Only wish it was at me... I guess it's true what they say, "Boys love their toys!"

Improving

2008-03-15T16:20:00.000-05:00

Jackson is now home. He is still fighting RSV but improving every day. The doctors said he will most likely have symptoms of the virus for another couple weeks but should continue to get better. Hopefully we'll be able to pick up where we left off in the NAM process again this week.

Health Care

2008-03-14T14:15:00.000-05:00

Jackson is still in the hospital being cared for and getting closer to going home every day. His vitals are good, and his breathing is great. We’ve been told multiple times by the doctors that almost every 2 month old kid (or anywhere close) that they’ve had come in with RSV has needed oxygen the entire time, and they’ve never seen a baby get all the breath they need on their own in spite of the virus. So we’ve got a fighter. Hopefully he’ll be home soon.

We’ve learned a lot of interesting things about hospitals and health care since this whole thing began, and it’s combination of ridiculous, annoying, and ironic. For one, it turns out that the nurses in the NICU had been trying to get our health insurance to cover a vaccine for Jackson against RSV when he was in there to prevent this exact situation from happening. Health insurance wouldn’t cover it because the vaccine is considered too expensive. So now they get to cover a 5 day hospital stay plus medication and testing instead. Nice. I’m guessing they didn’t come out on top in that one.

Also it turns out the hospital we are at (Sierra Vista) is the only hospital with a children’s ward within 100 miles. The next closest is Santa Barbara, and after that the next closest is in Fresno. And the hospital we are at has a grand total of 6 beds. The explanation for it? They don’t make enough money off of the children’s ward so all the area hospitals have either closed them down, or cut down the size.

We lucked out because there just happened to be ONE open bed when we admitted Jackson. Not so lucky.. the 4 families since then (that we know of) that have not been able to admit their children and have either had to drive to Fresno or wait.

Welcome to our health care system.

RSV

2008-03-13T01:25:00.001-05:00

Jackson was admitted into Sierra Vista hospital today. On Sunday he came down with a cough that has quickly progressed into a virus - RSV (Respiratory Syncytial Virus). This virus can quickly turn into pneumonia if not monitored closely, and in Jackson's case, due to his cleft, this virus poses a more serious threat. He is currently on an IV to keep him hydrated as well as monitors for his heartrate, oxygen levels, and respiration. Please keep him in your prayers, that he would recover quickly, and that it would not progress into pneumonia. He is one tough little boy.

Updates

2008-03-07T21:45:00.000-06:00

Just a quick reminder that if you would like to stay updated on Jackson's progress and any current news, you can subscribe to receive email notifications each time our journal is updated on his CaringBridge website or subscribe to our RSS feed here on our blog. We will be updating both regularly.

Thanks again for being such an amazing support to us during this process. Feel free to pass these sites on to anyone you like who might be interested in Jackson's progress.

NAM

2008-03-07T21:20:00.000-06:00

Jackson was fitted with the NAM yesterday. This was the first step in the process. Next week he will be getting fit with the nasal portion of the device. The process of getting the NAM to fit well without irritating Jackson’s mouth was fairly long and tedious. We arrived at the clinic at 1:00pm and didn’t leave the hospital till around 4:30pm. But Jackson was a rock star, barely crying throughout the whole procedure (meanwhile, we were hearing the screams of the other babies in neighboring rooms). He was complimented by the doctor, saying that he is a very adaptable baby.

It has been a fairly long day today trying to get Jackson to eat as he is not used to the changes. And he can’t seem to stay awake. Yesterday must have worn him out. We were advised that learning how to eat with the NAM could be a process, so we’ll see how this goes. Hopefully our ‘adaptable’ baby will adapt very soon. Keep us in your thoughts and prayers.

NAM Donations

2008-03-04T14:00:00.000-06:00

Many of you have been asking about how to go about donating to Jackson's NAM procedure (because it isn't covered by insurance). Here's what we're doing:

If you would like to give a tax-deductible donation benefitting Jackson, Mountainbrook Community Church has agreed to process donations taken for Jackson's smile. The church will make out a check to the Craniofacial Team at CHLA. If more than $4000 is collected, that money will be donated to Operation Smile. Make your check out to 'Mountainbrook Community Church' and in the memo please write 'Operation Smile'. You can mail the check directly to: Mountainbrook Community Church, 4251 S. Higuera Ste. 200, San Luis Obispo, CA 93401.
If you are interested in helping us out directly, you can mail us at: 410 Foothill Road, Shell Beach, CA 93449.

Again, we greatly appreciate your prayers and support. We will continue to keep you updated with Jackson's progress.

MIA

2008-03-03T13:50:00.000-06:00

Sorry if we've been a little MIA the past couple weeks. Our lives have consisted of late nights, little sleep, plenty of poopy diapers and way too many tears, but we're making it through. At least, we hope we are. :)

To let you in on the latest happenings with Jackson... We are currently making weekly trips down to LA Childrens for a procedure called NAM (nasal alveolar molding). This past Thursday, a molding of Jackson's mouth was taken. This Thursday, he gets fitted with the mold. Every Thursday (for a few months) afterward, this device will be adjusted, helping to bring together Jackson's gums, lip and nasal cavaties prior to his surgeries. This procedure is $4000 and not covered by insurance, but we believe it to be the best possible option for Jackson. Because Daniel is unable to take this much time off for the weekly LA trips, my mom and I are traveling by train once a week. This allows me to take care of Jackson on the way and not have to fight LA traffic with a newborn. And thanks to Aunt Mary Trine, The Great for getting us to and from the Glendale Train station to LA Childrens - you are a tremendous blessing!

We are constantly updating our Flickr site with new pictures so make sure to stop by.

Home At Last

2008-02-10T20:35:00.000-06:00

He's home! After almost 5 weeks in the NICU, we finally have our son home. We are so thrilled and excited to start our lives together as a family. We are planning Jackson's Homecoming Party for next Sunday, February 17th. We will post the details again as we did last time. In the meantime, check out our Flickr site as we've posted some new pics.

We can't wait for you to meet our little guy!

False Alarm

2008-02-06T21:05:00.000-06:00

After getting everything set to bring Jackson home today, it didn't happen. For the past few days Jackson has been taking every feeding like a pro, eating anywhere from 65-85 cc's every 3-4 hours, thus giving the doctors the confidence to send him home. Today, however, was a different story. He struggled through his 9am feeding and didn't wake up for his noon feeding, so they put the feeding tube back in. After getting some much needed rest, he rocked his 3pm feeding today and ate 85 cc's again. Because of today's events, the hospital staff want to take a bit more time to observe him and make sure he's really ready to come home.

Obviously, we are a bit disheartened and discouraged, especially because we were gearing up to have our boy come home with us today. We don't honestly know when he'll be able to come home. It could be in a couple days or a couple more weeks - we really have no idea. In the meantime, we're postponing "Jackson's Homecoming Party" until further notice. When we know more information, we'll let you know.

Almost Four Weeks Old

2008-02-04T00:05:00.000-06:00

Has it really been four weeks since our little man entered the world?! Not much has changed since our last update. Jackson is continuing to improve each day. In the past couple days he has been taking his full feedings from the bottle. This is the main thing we have been waiting for. We have a Family Conference scheduled for 2:00pm on Tuesday with his doctor, the physical therapist, nurses, and social worker to discuss what needs to happen in order to bring him home. Hopefully this means he'll be home by Tuesday or Wednesday.

If everything continues as hoped, we are planning a "Homecoming" Party for Sunday, February 10th, so anyone who can make it can come meet our little guy. Look for more details in this next week.

Two Weeks Old

2008-01-21T21:05:00.000-06:00

Two weeks ago today Jackson made his appearance. His first weeks have been filled with every possible test you could imagine. As Daniel mentioned before, he passed his hearing and eye tests with flying colors. Jackson also had a MRI done along with a Lower GI last week. Both tests came back normal. His doctors have wanted to rule out the possibility of any other connected conditions to his cleft lip and palate, thus the vast array of tests.

Jackson is gaining weight, weighing in at 7 lbs. 3 oz. on Saturday. We have been waiting for him to eat better from his special bottle (Pigeon Nipple and Bottle) and digest what he's eating, and poop on his own. It's amazing how poop becomes a common topic of conversation once you have a baby. J As of today, Jackson is pooping consistently on his own! Yay! And he has had low to no residuals (undigested food) the past few days. His bilirubin levels (jaundice) are finally going down (primarily due to the fact that he is now digesting and pooping), so he is no longer under the lights. We are making definite progress! Hopefully that means it'll be sooner than later that Jackson will be able to come home. We sure are hoping; it has been hard to be home without him.

I am doing much better, recovering slowly but surely. I had my two week post-op appointment today and everything seems to be healing really well. I can't believe I've already lost over 40 pounds, and am only 5 pounds off my original weight!

We have greatly appreciated all your prayers and support of us over the past months. We will continue to update you with any news and progress. Please continue to pray for Jackson, that he eats and poops and gets to come home to us soon. We love you.

One Week Old

2008-01-15T16:45:00.000-06:00

It's been one week since Jackson appeared in the world. Halle is now back home and healing really well. She's still on pain meds, but will hopefully be done with them by next week. We've been working out schedules to visit Jackson in the hospital each day. Takes some maneuvering, but it's working out.

Jackson is doing great. He's progressed from eating 2mls of fluid every 3 hours to now eating a little over 2 oz every 3 hours. He's slowly starting to gain back some weight as well. We've been learning how to feed him with a special nipple that makes it easier for him. He's rocking it like a star.

The Magnesium is finally starting to wear off, and he's waking up, and as of right now he's got really dark blue eyes. We'll see if it sticks. ;)

He's had hearing and eye tests so far, and all of them have come back with 5 stars. No problems at all.

That's it for now. We'll keep shooting the updates out until he gets home, then there will probably be a break for a bit.

He's Here!

2008-01-07T15:45:00.000-06:00

Well he's here. ;)

They took Halle and I in at 12pm, and the pulled him out at 12:30. 6lbs 6oz, and 19 and 1/2 inches. And he's a howler.

For those who are keeping track of record breaking, they pulled almost 5 liters of fluid from Halle plus another liter (at least) that ran out when they cut her open. Nasty, I know, but holy shit man, let's give credit where credit is due. Halle is a trooper.

Halle is in recovery right now. Jackson is doing fine. They haven't even needed to give him an oxygen mask. He's breathing on his own with a little help from a "blow by" oxygen machine that basically just puts it in the air around him, and that's enough.

In a few hours, we'll be able to go in and see him, and take in visitors to see him one at a time. Halle will be hanging out in room 203 until at least Friday, and will be WAY more comfortable. Visitors are still welcome (but maybe starting tomorrow)!

Thanks for all your visits and prayers. We have amazing family and friends.

Today's The Day

2008-01-07T11:15:00.000-06:00

Halle just called, and they can't stop her contractions again, and it looks like her cervix is changing as well. They don't want to risk natural child birth because of Jackson's position, so they're moving up the c-section to today. So I'm off to the hospital.

Game Plan

2008-01-06T14:50:00.000-06:00

Well we finally have real news and a plan. Halle kicked into hardcore contractions (30 sec to 1 minute apart) last night. They managed to knock her out for only about 2 hours with pain meds, and she was back awake and in pain again. So Dr. Yin decided to put her back on Magnesium. So that kept Halle up most of last night but it did manage to mellow things out. It turns out that Halle is measuring how a woman having triplets would normally be measuring at this point. Sweet.

Dr. Yin came in this morning about 9am after talking with the NICU staff and had a game plan. As of right now (because of space issues, and the hospitals policy on keeping planned c-sections to 2 a day) we are scheduling a c-section for Wednesday around noon or so. In the meantime they are going to wean her off the Mag starting tomorrow morning. If she ends up in actual labor and delivers early, then that's great too. Or if she goes into labor and then requires an emergency c-section, then all bets are off, and they'll do it immediately.

So Jackson will be here by Wednesday at the latest. Since Halle will most likely have a c-section, she's going to be in the hospital for a bit longer, but we're both happier knowing we have an end to the craziness ahead of us.

Thanks again for everyone's prayers and visits. It's been getting us through this one day at a time. I'll let you know when the next milestone is hit or when Jackson decides he's on the way.

No New News

2008-01-04T17:10:00.000-06:00

Not much news really, but in here's what we got. Halle is still having contractions 2 to 3 minutes apart, but not progressing into labor. They've got her drugged up like crazy, which makes her pain less so now she's just really uncomfortable and slowly going insane ;-)

I've got my mac sitting in her room with a stack of dvd's (thanks Jenn!), and she's had a lot of visitors (thanks all!). At night they give her pain medication that is pretty gnarly, so she's usually down for the count by 9pm or so. She's been resting better.

They have now decided if nothing is happening they will let her go home on Monday. Not exactly sure what the hell they think we're supposed to do at home.

This has been my interaction with the nurse:

Nurse: She can go home on monday if she's not in labor.
Me: So..... How will we know when to come back? She's already having contractions 2 minutes apart....
Nurse: Well.. They would be more intense.
Me: I wouldn't say that within arms reach of Halle if I were you.

So we'll see what happens. Either she'll go into labor before then, or after we "go home". It could get interesting.

I know that Halle doesn't know what she would do at home, or how she would handle it without the pain meds, but she also wants to do anything she can to get out of the hospital. We'll see.

Limbo

2008-01-03T01:20:00.000-06:00

So Halle spent the first half of yesterday in major pain. They stopped all medication (since it wasn't doing jack-squat anyway) and by noon she was having a contraction every minute or so, and they were getting to be unbearable. So about 4pm they decided to give her Morphine again since there's no change, and it doesn't look like she's any closer to delivery. They did it again last night so she could sleep.

Dr. Yin came in this morning and let us know that they were basically just going to do nothing except help with the pain. She wants Halle to get to at least 34 weeks (which would be January 6th) before she thinks about inducing or anything like that. Plus, evidently there are no beds in the NICU which is where Jackson will definitely be when he first shows up.

So now we're just kinda killing time till then. I'm going to try to track down some more dvd's for Halle to watch, and get her non-hospital food as much as possible. I think she'd be up for visitors during the day. She's in room 309 on the 3rd floor. She feels like crap and feels like she looks like crap (even though it's far from the truth) so she's self-conscious about having visitors, but I think it would be good if you could stop by. I'm stuck at work during the day so unless her mom or sister are there, she's just watching tv.

I'll let you know if anything major happens, otherwise it's business as usual until Jan. 6th

On The Move

2008-01-01T12:50:00.000-06:00

Alright. As of this morning Halle is 2 cm dilated and 80% effaced. She's having contractions 2 minutes apart. They've switched her to a delivery bed, and we're on the move. Who knows how long from here, but it could be today sometime.

Moving Forward

2007-12-31T11:00:00.000-06:00

This is a quick one.

The doctor is not quite as risk averse as we had thought. He decided this morning that since Halle is already 33 weeks, and the steroids have been administered, that we could move ahead.

They are taking her off the Magnesium right now, and we will be waiting to see what happens. Might be a 2007 baby. ;)

Amniocentesis

2007-12-31T01:35:00.000-06:00

Yesterday they decided to try to remove the excess fluid. They did an amniocentesis with the goal of removing at least 3,000 ml of fluid. About 5 minutes into it, Halle had a really bad reaction to the procedure. She had a really hard contraction that ended up seizing the needle. She nearly passed out from the pain. The tried to ride it out for a few minutes, but Halle kept getting worse, so the immediately stopped the procedure and pulled the needle out, and administered a dose of Fentynol. That took about 5 minutes to take effect and Halle was exhausted and still in pain even after it kicked in.

That pretty much decided for them that they were no longer going to attempt to remove fluid, which means they were out of options. The Terbutalene is having no effect, the Magnesium is not really stopping the contractions and removing excess fluid is now out of the question.

So here's the current story.

Halle is still having a contraction about every 7 minutes. She is still on the Magnesium and is still having to endure all kinds of discomforts and needles every few hours. We just found out that Dr. Yin won't be back in town until January 2nd. In the meantime another doctor is in charge and he is very averse to risking anything without Yin's involvement. We aren't 100% for sure until we talk with him tomorrow morning. But it seems likely right now that he will want to just maintain status quo. So that would mean keeping Halle on the continued Magnesium IV, and hope that nothing changes to force our hand and require Jackson to be delivered. Then we'll hold out until Dr. Yin is able to be consulted on Wednesday. We have no idea what she'll want to do at that point.

Either Halle will be stuck on bedrest in the hospital until Jan. 8th which was the original plan. It is also possible that Yin will decide to let things just move forward. If that is the case, they will remove Halle from all medication and we'll most likely have Jackson soon.

So that's it for now. We'll be hanging out in the hospital when I'm not at work. I'm making the famous "Whittington New Year's Eve Shrimp Gumbo" and taking it to the hospital tomorrow night. Halle and I will be sharing it with all the nurses that we've gotten to know. ;)

Let me know if you have any questions or thoughts for Halle.

More updates to come.

Hospital

2007-12-29T14:00:00.000-06:00

Last night Halle was having around 12 contractions an hour and they were getting stronger. So after 3 hours of that we went to Sierra Vista at about 10pm. Once we got there they immediately gave her a shot of Terbutalene. That didn't really do anything, so they gave her another at about 12am, and when that didn't work they gave her another shot and a pill at about 2am. At 4 am, there were no changes, and Halle was not dilating either so they decided to put her on a Magnesium drip. At about 8am, that was not having an effect either, so they brought in Dr. Shields to look check her out, and were wanting to do an Amniocenteses to remove the excess amniotic fluid. We were not a big fan of that idea except as a last resort, so we voted to increase the dosage of magnesium first to see if that would work. They also gave Halle an injection of steroids to start giving Jackson's lungs a boost in case he ends up coming early.

So here's where were are now.

Halle hasn't slept at all, what with all the injections, the side effects of the medication, and being ridiculously uncomfortable. I slept about 1 hour. I'm now at home trying to get some things together since Halle will be in the hospital until at least Monday morning at 8am. At that point the steroids will have had the desired results and it will be better for Jackson if he ends up coming early.

If the increased dosage of Magnesium doesn't work, they'll want to remove the excess fluid this afternoon. Side effects are infection and the possibility of Halle going into immediate labor.

We're not that worried about Jackson coming early because we both think that we're about a week and a half ahead of schedule. But keep us in your prayers. Pray mostly that Halle gets sleep, and that Jackson weathers this with the minimum amount of complications or stress.

Disability

2007-12-12T00:45:00.000-06:00

Daniel and I wanted to update you with the latest happenings in the Whittington neck of the woods... We went in for our monthly ultrasound yesterday. It appears that Jackson is growing quite well, as he is now weighing about 4 lbs. 6 oz. The specialist told us we have a very large baby; most babies at this stage weigh almost 3 lbs. I am still measuring quite big for where we're at due to an increased amount of amniotic fluid. I should be measuring at about 31 weeks, but am measuring full-term. This poses a number of problems for both Jackson and myself.

I have been in quite a bit of back pain for a few weeks now, and as of last week was put on disability by my doctor, so I am no longer working. I was having a few contractions here and there, and have been very uncomfortable, but because this is all new to me, I haven't really known what should cause concern and what is normal.

At yesterday's ultrasound, the specialist said that I will need to begin having non-stress tests done twice per week from now on. Excess amniotic fluid can pose many risks to the baby, and can be associated with a high rate of fetal mortality. Thus, the regular non-stress tests. There is also a very high risk of preterm labor.

Well, today I received a call from my doctor's office to go in for my first non-stress test. I went in at 3:15pm today and they began monitoring Jackson. During my visit, I mentioned that I have been experiencing quite a bit of contractions. The doctor felt a few in the short time she was there and sent me over to Sierra Vista Hospital. I was there for a few hours while they monitored contractions and Jackson's heartbeat. I was having fairly significant contractions every 6 minutes, so they gave me a shot of tributelene which seemed to help slow them down right away. They administered a couple other tests while I was there, and at about 7:30pm I was released with strict orders. I am officially on complete bedrest. I can only get up to use the bathroom, and use the microwave to heat up meals if I have to. I was instructed to keep an ice chest next to the bed with any food and drink items easily accessible. (Daniel is currently shopping for those items as I write.) I can only drive to doctor's appointments, otherwise, I am to remain at home resting. I was also given a prescription for terbutalene which I am to take every four hours as contractions persist.

The good news is that other than his cleft, Jackson's heart, brain, kidneys and limbs all appear perfectly normal and healthy. And Daniel's doing great, able to drive and move around as usual, taking care of his bedridden wife. :) We're not sure how long I'll be on bedrest. It could very well be for the next 4-6 weeks. The doctors seem to think Jackson will make his appearance in early or mid January.

So, if you're in the area, and you have a bit of free time, please don't hesitate to come by and say hello. I'll be here. :) And please continue to pray for Jackson's health (and my sanity) over the next weeks, and that he would stay put long enough so that no other complications would come into play.

Lastly, it looks like we'll be going to UCLA for his surgery. We don't know much more than that at this point, but when we do, we'll fill you in. Thanks again for your prayers and support. We love you.

Bilateral Cleft Lip & Palate

2007-11-12T14:25:00.000-06:00

Daniel and I just wanted to give you a quick update as to the latest with Jackson. We had an ultrasound today and it was clear to the doctor that Jackson has both the bilateral cleft lip and palate. The doctor also did a fetal echo on Jackson's heart and he said it looks fine. We will be scheduling a consultation with the pediatric surgeons at LA Children's Hospital within the next month. We'll know more at that time, and have an opportunity to ask the many questions we have had rolling around in our heads for some time now.

Latest Ultrasound News

2007-10-16T00:15:00.000-05:00

Daniel and I want to thank you all for all your prayers and support over the past few weeks. We have really appreciated it.

Our latest ultrasound was this past Friday. The doctor that performed our ultrasound this time was extremely helpful, answering as many of our questions as possible during the visit. Jackson definitely has a bilateral cleft lip. The doctor switched over to 3D for part of it, and it was much more visible to Daniel and I than it was to us in 2D. She looked for awhile at his face and mouth, and told us that she was not certain as to whether or not Jackson has a cleft palate as well. She said from what she could tell either he only has the cleft lip, or if he does have a cleft palate, it is minimal, as it was not noticeable by ultrasound. That was good news, as the cleft palate poses many more problems for the child, including hearing, speech, and teeth problems. The doctor said we most likely will not know much more than that prior to his birth.

We will have another ultrasound November 12th, what they call a "fetal echo". They want to take a better look at Jackson's heart to make sure everything looks normal and healthy. I guess it's normal practice to have a fetal echo whenever abnormalities occur, as they could be linked to heart problems. Following that ultrasound, we will schedule a consultation with the surgical team from either LA Children's Hospital or Stanford. We'll be able to meet with the surgeons who will be performing Jackson's surgery and ask any questions we have at that time. With the cleft lip, most surgeries take place when the baby is at least around 3 months old and weigh at least 12-14 lbs.

Our due date got moved up from February 17th to February 9th, as Jackson was measuring further along. Jackson is now weighing about 1 pound 3 ounces. We got the cutest picture of him while he was hiding his mouth with his hand. I'll see if we can scan it and pass it on. (I personally think he looks like Daniel.) The doctor also mentioned that I have a bit of excess amniotic fluid, most likely because it is a bit harder for Jackson to swallow with his cleft. Please continue to keep Jackson (and us) in your prayers. We will keep you updated as we learn more.

Cleft

2007-09-12T14:05:00.000-05:00

We had the next ultrasound today at 11am. We were informed that the nuchal translucency that was the problem before looks like it's gone away as far as they can tell. The angles they were getting on Jackson weren't good enough to be 100% certain, and he wasn't obliging us by moving to his side to make it easier.

However they were able to tell us that he has a bilateral cleft lip (and possibly palate), and they're certain on that one. As it turns out, this is sometimes connected with other major problems such as brain functionality and hearing problems. Unfortunately (although it's about par for the course) we won't know more for at least 3 weeks which is when they have to wait do the next ultrasound to check up on other things that could be wrong.

If the only problem is the cleft palate and lip, then we will then have to go down to the LA Children's hospital to consult with surgeons on the next steps of a very long process. They will be able to tell us when the first round of surgeries will have to occur, and talk about the possible need for a prosthesis for his mouth so that he can eat when he is born.

As of right now we don't know much other than that, and whatever internet research can bring up. In 3 weeks we'll know if it's an isolated problem or if it's connected to something much bigger. Your prayers would be appreciated.

CVS Results

2007-08-21T11:15:00.000-05:00

Daniel and I just received the results this morning from the CVS procedure. Everything came back normal!!! We are so happy and so thankful.

We also found out that...

IT'S A BOY!

So we'll be welcoming Jackson Trine Whittington into the family sometime in mid-February! Please continue to pray for his health and protection over the next months . Thank you all for praying and for your love and support.