March 31, 2010

Poor little one

Croup and a major ear infection.

He's not too happy about it, but hopefully the steroids and antibiotics will make him a little happier.

The A+ Tooth Fairy Sickness

Well, Carter's sick.


Both of the older kids had some sort of virus about two weeks ago that gave them a lovely cough and high fevers. Carter has had the cough for about a week, but no fever. It's been pretty much in his throat, so I've been keeping his area humidified, bringing him into the steamy bathroom occasionally, and just keeping an eye on him. The last two days it sounds like it's moving down into his lungs which is what scares me. Otherwise, he's doing pretty well. We haven't had to change his Oxygen settings, and his Sats are staying normal. He's just a little overly cranky. His pediatrician squeezed us in today at 4:10, so I'll post an update as soon as I can.


On a more positive note, Mikey got his Kindergarten report card and got all 3's! That would be equal to all A's! I know that he's only in Kindergarten, but he has struggled in a few areas since the beginning of the year and it's so good to see such a huge improvement. Way to go Mikey.


He also lost his very first top tooth. What a cutie!

March 29, 2010

The Big Celebration!

Daddy's been promising Carter a giant birthday party since the little guy was one week old. Well, he certainly delivered! We had our family over for a Subway party sub, and the kids played in the back yard with the bouncy castle, while the rest of us just relaxed and chatted.

First, let me tell you about the cake. Our dear friend, Anna, made Carter this AMAZING cake. It was bigger than he is! It tasted just as good as it looks. THANK YOU ANNA! Carter (and the rest of us) LOVED it! It certainly made his first birthday even more special. The cake was simply perfect!




She made a little cake for him to dive into as well.






He liked it at first until some of the frosting got stuck in his cleft and he shot it out his nose lol! Everyone spoiled him with clothes and toys. We figure he deserves it though! Carter had a little cold, so he didn't quite make it through the opening of gifts before he needed a break, but that was OK since brother and sister didn't mind opening them for him. All in all it was a truly excellent day, and a birthday that I won't soon forget. I'm now the proud mother of a one year old! Thank you to everyone for making his day so special!

March 28, 2010

We Did It!!

We kicked off Carter's birthday by participating in the Third Annual Operation Smile 5K . Well, some of us participated in the 5K, while the rest of us did the 5K walk...

uphill the entire way....

through the mountainous back country of Utah...

among all of the wild animals and faraway sounds of gunfire...

Ok, Ok...maybe it was only a mile on a paved trail, near a skeet shooting area, but who's keeping track anyway?!

The weather ended up being pretty decent, and the little guy kept warm by about a trillion blankets.
Michael, Uncle Justin, Aunt Stacy, and our dear friend Kent all did the 5K and represented Carter in an awesome way! You guys are SO awesome. Thank you!

Carter and I went on the one mile walk, and were joined by Grandma, Mikey, Jovie, and Cousins Sammy, Emily, and Justin. We also had two more of our dear friends, Kathy and Sandy.

I can't express how much we appreciate our family and friends joining us in this cause. We love each and every one of you SO very much!

We had an excellent time! Uncle Justin even won a pretty cool prize in the raffle. The Operation Smile event managed to raise approximately $5000 which will certainly fix a lot of lips and palates. I can't wait until next year when we can do it again. I can't begin to tell you how much fun this was




Afterward we went to a restaurant for a little birthday lunch. Can you believe that this was Carter's very first time in a restaurant?! Here's how excited he was about it:

I guess the one mile walk took a lot out of him! More birthday pics to come!

March 27, 2010

HAPPY BIRTHDAY CARTER!!

We love you so much Carter, and are beyond grateful that you came into our lives. You have taught us how to see things in a different light, and to appreciate life in a new way. You are such a blessing. Thank you for trying your best each and every day, and for choosing us to be your Mommy and Daddy. We are so proud of you, and we can't wait to continue this journey with you! Happy Birthday baby boy!

video

March 25, 2010

Signing Day Friday


I learned a few new signs for expressing emotions.

This is the sign for hurt.  You can do the sign for hurt, and then point to the area that does.

This is the sign for angry.
You form claw hands and placing your fingertips against your stomach then pull both hands up and outward. It's important to make an angry face when you do it.

And finally, this is the sign for Happy.  As in Happy Birthday to Carter tomorrow! ;)

To Our Family, Friends, and Blog Readers

As we near the one year mark of our journey, I feel a flood of emotions coming back to me.  It's hard to describe unless you've been there, but it's a mixture of complete joy, and total sadness. I'm not one who is typically sentimental about dates, but I feel as though I'm reliving those first few weeks, and it brings with it a lot of anxiety.

One year ago today, I went into labor.  I spent all morning at the hospital without progressing, so I was sent home. I had absolutely no idea what God had in store for me...I had no idea of the secret that little Carter was hiding from us... I had no idea that we would be thrown into a journey that would be absolute hell for the first few weeks, but then turn into the biggest blessing that we could have ever asked for. 

I had no idea...

I had no idea that there were so many people who cared about us, and loved us.

So, today I have a message for all of our family, friends, and blog readers.

Thank You.

Today, I am grateful for everything you have done for us.

Thank you to my husband for being my rock.

Thank you to Mikey and Jovie for being strong through the last year.  You had your lives turned upside down, but you bounced through it with grace and ease.

Thank you to ALL of our family and friends for carrying us through the last year...even those who live far away. We know that we haven't been around much, but we really appreciate all of the love you have showered us with. Seriously, I can't think of one friend or family member (extended family included) that hasn't let us know that they are here for us.  We appreciate all of you SO very much!

Thank you to the Grandparents who took over our duties as mom and dad for Mikey and Jovie while we stayed with Carter.

Thank you to my sister-in-law for listening to me and talking me through all of the diagnoses as they kept appearing. You kept me sane! 

Thank you to our neighbors for always shining a positive light on things when it seemed that it was getting very dark, and for loving and accepting Carter.

Thank you to all of Michael's coworkers and friends for all of the support you have given us...it means a lot!

Thank you to my "britches" for loving little C even though you've never met him.  I have no idea where I would be without all of you ;)

Thank you to Carter's NICU nurses, all of his doctors, and his therapists.  We wouldn't be here without you!

Thank you to our blog readers for your wise advice.  It's so nice to know that we aren't on this journey alone.

Thank you to anyone who has ever said a prayer for our little guy.  We know that they work!

And of course, thank you to God for giving us this wonderful gift. 

March 22, 2010

I Saw Him Standing There

Carter gets something set in his little mind, and there's no changing it!  I'm pretty sure he gets that stubborn streak from his father.

Right now, we're supposed to be working on rolling and sitting. 

Seems reasonable, right?! 

Nope.

Carter is only interested in standing.  He's all about practicing his weight bearing on my lap, OR in the Exersaucer.



In other news, his bloodwork came back from Endocrinology and there are a few things that measured low, but still within normal limits.  We have to go back in April for another blood and urine test.

Mikey and Jovie have been sick with a virus that gave them a nice sounding cough and fever.  So far, Carter seems to have only contracted a minor cough and is otherwise fine.  We'll just keep watchin' him.

We're quite excited for the Operation Smile 5K since it seems that the weather is going to cooperate (still keeping my fingers crossed). Can you believe that the little guy is going to be one this weekend?!

March 20, 2010

The No Child Left Out Project

I was just made aware of this project today, and I'm so excited about it!

The 'No Child Left Out' is a Non-Profit Organization that is planning the dream of Syracuse's 'Sunshine Playground.' The playground will include features that will allow all children to play side-by-side and truly enjoy being children! To allow for wheelchair access, there will be transfer stations, ramps, wider paths, stable surfaces, table play, ample space around equipment, swings to accommodate children in wheelchairs, as well as auditory and tactile elements.

The exciting part about this is that the location of this park will only be a few minutes from our house.  Of course we would LOVE to have a place like this for when Carter is old enough to enjoy it.  How cool is that?!

So, to my Utah peeps, I'd like to make you aware of a few events going on to support this wonderful cause.  You can be sure that we're going to try to make it to these and support the building of this playground as much as we can.




March 19, 2010

Signing Day Friday


It's true.

I've slacked big time on this, but I'm back now and will try harder. I promise!!

Carter is my...
Baby.

Even if he's having a birthday next week!

Jovie is my...
Girl!
You slide your thumb forward down your cheek.

and

Mikey is my...
Boy.
Just think of it like you're grabbing the brim of a baseball cap.



March 17, 2010

Team Carter Shirts & 5K Runs

OK, here is the update on the 5K runs and the Team Carter shirts.  Before I get into all of the specifics, let me just say that we plan on doing several of these in the years to come.  We think it's a fun way to show some support for Carter, and also keep in shape.

Well, I'm not in shape yet, but maybe it will inspire me to get there (the key word there is maybe).

Operation Smile 5K Run/Walk: If you would like to celebrate Carter's first birthday by joining us for this run/walk, we'd love to have you! The run is a 5K, and the walk is 1 mile. It is in on March 27th, and in Orem. The race starts at 10:00. There is a $15 fee for the run, and a $12 fee for the walk, BUT all proceeds go to Operation Smile. That fee also includes an Operation Smile 5K T-shirt. There is also going to be music, drawings, and food. It looks like a good time... just pray for good weather! To sign up, or for more information, you can click here: Operation Smile 5K .  We won't have Team Carter shirts in time for this race, but I plan on doing some sort of ribbon to show our support for Little C!  :)

Clinton City Fun Run: This is the race that we had originally planned to do for Carter, and we've decided that we're still going to do it.  I still don't have a lot of details on it except that it is typically held in the middle to the end of July and on a Saturday.  It is usually at about 6:00 am because the city parade is right after it. The fees last year were $10.00 without a shirt, and $15.00 with a shirt.  I believe those were the pre-register prices, and the fees went up by $5 if you registered on the day of the race. As soon as I have more info on this one, or any other races I'll post more!

Team Carter Shirts:

I had decided to wait until next year's Operation Smile race to order T-Shirts, but in my own Heather way, changed my mind.  If you know me at all, this is so true to my fashion!  Anyway, we're going to be putting in an order on June 2nd, SO the deadline to order will be June 1st. I expect them to be about $7.50 each, and we will have Adult sizes XXL-S, and Youth sizes S-L.  They will be here in time for the Clinton City Fun Run if you were planning on attending that event with us, but know that even if you don't want a shirt we would love to see you there!  To order, you can email me at teamcarterjay@gmail.com. I'll be putting a button on the sidebar to as a reminder too.

I don't want anybody to feel pressured at all to get a shirt in order to participate in a race with us, or to even participate in a race. It's just a fun thing that we're doing, and wanted everyone to know that you're invited to join us.  We appreciate all of your prayers and support... believe me when I say that is plenty!

March 16, 2010

May 19th!

That is the official date for Carter's next surgery!

We met with the final surgeon on the roster today.

Carter has three different doctors working on him, plus he'll have an Echocardiogram and ABR (hearing test) done as well. It's going to be one LONG day, but we're up for the challenge.

The major things that are happening for him is that he's going to be getting his soft palate completely repaired.  This could be a life changing surgery because it "should" make it a lot easier for him to eat and make vocalizations.  It may even improve his breathing.  I'm keeping my fingers crossed that it improves things on all accounts, but guarded because I don't want to be disappointed.

The second thing that is happening is he is getting some work done on his right eyelid.  Since he can't close it completely, there is a chance that he could dry out his cornia and create some serious damage.  The doctor will be doing a surgery to make his eyelid less tight.  He still won't be able to blink it, BUT his eyelid will look much more uniform to his left eye, and he'll be able to almost close it when he sleeps.  He'll have another surgery done when he is five to insert a gold weight which will help him to blink. At least we'll be making more progress.

Of course I'm nervous, but I'm also excited at having a few more things crossed off of our list, and to see what the outcome is.  It's a blur of emotions I guess.


Is it just me, or are those cheeks getting REALLY chubby?!?!

Carter also had a speech evaluation done today.  It was mainly to see if we were doing OK with the services we are receiving through Early Intervention, or if we needed to add some private therapists. I'm very happy to say that Carter showed off for the Speech Therapist, and she doesn't think that he needs any more help right now.  She said that she believes he is pretty close to the SIX MONTH level.  Now, he certainly doesn't babble as much as a six month old, or put together syllables, BUT she said that if you take into consideration the language he is using with the obstacles (clefts, hearing loss) he has to overcome to use it, that is where he is. I try very hard not to compare Carter to other babies...because...well...he's not other babies, but this news was still a little exciting to me.  I can't help but always have in my mind that he's a three month old, but Mommy needs to wake up because this little guy is moving forward without me!

March 13, 2010

Mommy & Daughter Date

Today Jovie and I had a wonderful Mommy/Daughter date!

I took her to see Disney On Ice, and it was so much fun to hang out with my baby girl.  She looked so pretty dressed as Cinderella.

Of course, she had to have a snow cone!

Afterwards she told me that she wanted to go to a restaurant, so I treated her to Applebee's.  No worries, the boys all hung out at home playing video games.  It was probably good for Carter to have some guy time.

Thank you baby girl for one AMAZING day out.  I hope that you don't forget it....I know I won't!

March 11, 2010

The Third Annual Operation Smile 5K

Oh, how I wish I had found out about this sooner, but what can you do?!

The Third Annual Operation Smile 5K is happening ON CARTER'S BIRTHDAY!!  It couldn't be more fitting.

What is Operation Smile?

It is an organization that provides free cleft lip and cleft palate repair surgeries to kids in over 50 countries.  How cool is that?

All of the proceeds from this 5K will go to Operation Smile. Over the last two years they've managed to raise over $10,000 which has provided surgeries for over 41 children.  Wow!

We've decided that there is no better way to celebrate Carter's birthday. Michael will be running the 5K while I'll be taking all three kids on the one mile walk.  I know that there are a few of our family members who will be joining us, and anybody else who wants to can find the information for the race here.  We'd love it if you decide to help us celebrate Carter's birthday by helping a cause we believe in.

I'm feeling like this run is a better way to show support for Carter than the city run in July.  First, it's for a charity, and not just for the city.  Second, it's for a charity that we can certainly relate to and believe in. We're still planning on doing the city's fun run in July, but will probably hold off on getting shirts made until we do the Operation Smile 5K again next year.  Here is a little more info on the Operation Smile 5K.

It is being held on March 27th, 2010 at Mt. Timpanogos Park - Up Provo Canyon (Hwy 189) about 1.2 Miles, Orem, UT.  It starts at 10:00 a.m., and you can register online by visiting http://www.operationsmile5k.com/ .

Here are some notes from the website:
If you are looking for one of the best trail races in Utah County, this is the right race for you. This is one of the most beautiful courses around with breathtaking views, a wonderfully laid out course, and a fantastic running atmosphere. This race was created by volunteers to benefit Operation Smile. Operation Smile is a nationally renowned non-profit organization that does cleft-lip and cleft palate surgeries for children all over the world. Over the past two years we have raised over $10,000 and plan on making it even more of a success this year! There will be music, food, drinks, random prize drawing (good prizes!) and much more!


Pre-race registration for the 5K Run is $15. Day of race registration for the 5K run is $20. Pre-race registration for the 1 mile walk is $12. Day of race registration for the 1 mile walk is $15. A sweet race t-shirt will be given to each person that pays the registration fee. Online registration will close on Friday, March 26th at 6:00 p.m. MDT.

March 9, 2010

A Trip To Ortho

Done!

We're Done!

We're done with the two weeks of millions of appointments!

The Ortho appointment went as well as it could have.  They took some X-Rays of Carter's spine during which time he managed to charm the nurse who told me that she was taking Carter home with her.  I told her that he had a lot of accessories, and she said that she didn't care because he was so cute and totally worth it!  Of course I agree with her, but I am a little biased.

The doctor was a very kind man, and decided that Carter has a Spinal Kyphosis , BUT he thinks that most of it is just bad posture which will be corrected as Carter gets bigger and stronger.  He does not want to put a brace on him for now because it would only make his trunk muscles weaker.  The doctor said that it's a very good sign that Carter is trying to sit on his own, and only adds to his theory.  We just have to keep on with the Physical Therapy, and go back for another visit in 6 months.

I did say that we're done with appointments, but that's not entirely true.  Mostly, we're just done with the appointments that I was nervous for.  Carter still has two more Pediatrician appointments, a Speech Evaluation, and an Audiology appointment in the month of March.  He also has to see an Opthalmologist/Plastic Surgeon to see if we can possibly squeeze getting the eyelid weight put in during Carter's surgery in May.  I'm not sure if I mentioned it before, but it's looking like that will happen on May 19th.  I'll know for sure next week.

March 8, 2010

Endocrinologist

I'm SO behind on my blogging. 

Carter's still just chugging along.  We've managed to get him off of the continuous feed at night, so I've got him on several different feeds throughout the day where I'll feed him as much as he'll take through the bottle and push the rest through his G tube. We need to get that little belly stretched out a bit!  He's handling it well, but it's hard to tell if his acid reflux is getting any better since he really didn't complain about it before.  I keep listening for the little whistle, and it still makes an appearance, but with as bad as his airway looked it's going to take awhile to heal. 

I took him to the Endocrinologist today, and she doesn't think that he has any issues with his Adrenal gland.  She's getting some bloodwork done to be sure, but said that she'd most likely be calling me in a few weeks to tell me that we don't need to go back to see her.  I'd love crossing that doctor off our list!

Tomorrow is our appointment with the Orthopedic Surgeon.  I'll handle anything that comes our way, but would LOVE to hear that Carter doesn't need surgery on his spine.  I'll update again tomorrow!

March 3, 2010

Playing

That's all the little guy has been doing lately!

Play.

Play.

Play.


Do you know how long I've been trying to get him to at least look at the toy bar on the bouncer?  For the first month that he was home, I'd try it at least once a day, and he showed absolutely no interest.  I then just started putting him in it once every week or so. He just needed more time, because this week he's LOVING it.  He kind of does a crazy dance in it to make himself bounce up and down.  So cute!



Yup, that's Carter sitting alone in his boppy.  He probably only lasts about a minute without a little nudge to get him back up.  He's got a long way to go to get to sitting up alone, but I can see the light at the end of the tunnel.  I think the hardest part for him right now is that his spine curves forward making it hard for him to keep his balance.  I truly believe he'll get there though... I honestly didn't think that we'd be this far for another six months, so I'm EXTREMELY happy with the progress he's made in the last couple of weeks.

March 2, 2010

Acid Reflux

Oh My Goodness! 

I'm so glad that these appointments are over. 

We started out with an ultrasound on his kidneys and adrenal gland. We learned that the hemorrhage has gotten smaller meaning that it's resolving itself.  YAY!  His kidneys still look a little enlarged, but the Urologist isn't too concerned about it yet.  We'll just keep watching them.

After that we headed over to ENT.  Carter has been doing well with his breathing, but occasionally he gets a little whistle in his throat and whenever that happens it seems like his breathing gets a little heavy too.  I thought for sure that he had Laryngomalacia, and Carter's Pediatrician did too.  The ENT did a Laryngoscopy which is where he took a long wire which is about as thin as spaghetti and pushed it through Carter's nose and into his throat.  It has a tiny camera on the end that showed us what is going on in Carter's throat.  It turns out that the whole area was VERY red and inflamed proving once and for all that Carter definitely has acid reflux.  We added another reflux med (Zantac) and are going to try getting him off of the continuous feeds at night.  The ENT pointed out that if your stomach is being continuously fed, it will continuously produce acid.  Hopefully this works.  Honestly, Carter has been doing well, but after seeing how red and inflamed his throat was, he must really be miserable.  I hope we can help this with medication and no surgery is needed.

I am a little bit mad at myself over this whole thing.  Way back when Carter was in the NICU, he had another Laryngoscopy done which showed similar results.  Things are a little fuzzy for me, but I remember that at some point they took him off of one of the medications and after another test the NICU docs decided that he actually didn't have it. I fought to keep Carter on the Prevacid, but I should have fought to keep him on the Zantac too.  I remember Carter's nurses telling me that he needed to be on both, but I gave up the fight at one medication.  At least now we have proof, and can move on.

Our Theme Songs

I saw a really fun post on my friend Allison's blog.

Anyone who knows me, knows that I'm a HUGE music lover.  I always relate songs to things in my life which then builds memories, so for a fun post the question is "what is your theme song?"

I have a few for Michael, but my favorite is probably "Wonderful Tonight" by Eric Clapton. Whenever it comes on the radio, I instantly think of Michael.  This was the song that was at the beginning of our wedding video.


Mikey's song is "Somewhere Over The Rainbow" by Israel Kamakawiwo'Ole.  It reminds me of rocking him in the middle of the night when he was a newborn. He had a CD that we played for him while he slept at night.  This was one of the songs that was on it.



Jovie's song was really popular when she was first born.  I remember singing it to her all of the time.  I know that if she could have talked, she probably would have told me to just be quiet.  I still dance with her to this song, and she recognizes it instantly any time it comes on my IPOD.  "You're Beautiful" by James Blunt.


Carter's song is one that I heard on the way home from a hard day in the NICU.  It's always been one of my favorite songs, but it definitely seemed fitting for him.  I sing this one to him while we slow dance.  He's gonna be a heartbreaker, that boy!


So now the question is...what is my theme song?  That's a hard question for me to answer for myself.  My first inclination was to answer "Witchy Woman"... if you're not a Seinfeld fan then you won't sense the sarcasm in that. I'm really not sure what my theme song is.  Any ideas?  What is your theme song?


March 1, 2010

Doctor's Appointments Yuck!

Tomorrow is the big day.  We're taking Carter to see what the status is on his Adrenal Hemorrhage. We have an appointment to have the ultrasound done in the afternoon followed by an appointment with his Urologist and ENT.  The ENT obviously has nothing to do with the Hemorrhage, but they had an opening so we decided to try and kill two birds with one stone.

Have I mentioned lately that I really hate doctor's appointments?  I mean, I know that they are what is best for Carter, but I still hate them. Among many things, I hate the nervousness that I feel before we go to them. Our little experience with the plastic surgeon last week is exactly what I'm talking about. Not knowing if we're going to find out something new about Carter's condition gets to me every time. It scares me to think that he'll have to have additional surgeries.  I'm not naive... I know that new things are going to come up, but it's the feeling of waiting for the other shoe to drop.

These next two weeks are full of appointments that I'm especially nervous for. Tomorrow, I'm nervous for the ultrasound because I REALLY want the hemorrhage to have cleared up on it's own.  Nervous for the Urology appointment because I'm hoping that his Kidneys look better from the last ultrasound.  Nervous for the ENT appointment because I plan to talk to him more about Carter's airway. I'm ready to move on from here.  Wish us luck! I'll update tomorrow when we get home.