Wednesday, December 10, 2008
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...
Sunday, December 7, 2008
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...
Friday, December 5, 2008
Palate/G-Tube Post Op from Halle Whittington on Vimeo.
Thursday, December 4, 2008
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...
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...
Saturday, November 15, 2008
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.
Wednesday, November 12, 2008
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.
p.s. on a side note... did you ever realize how LOUD brushing your teeth is?
Tuesday, November 11, 2008
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.
Friday, November 7, 2008
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.
Wednesday, October 15, 2008
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.
Wednesday, October 8, 2008
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?)
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.
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...
I can't resist these dimples...
Monday, October 6, 2008
Monday, September 29, 2008
Thursday, September 25, 2008
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.
Friday, September 12, 2008
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."
Wednesday, September 10, 2008
Monday, September 8, 2008
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...
Monday, September 1, 2008
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...
Monday, July 7, 2008
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.