Caring for Caydence

Fact #3

2011-10-03T21:04:00.000-05:00

Having a baby with Down syndrome can happen to anyone. The cause of Down syndrome is unknown, but it has been found that women over age 35 have a slightly higher risk of having a baby with Down syndrome. However, the majority of babies with Down syndrome are born to mothers under 35 years old because of the high number of pregnancies in this age group.

As most of you are aware, women are born with a set number of eggs in their ovaries. Cell division in those eggs remains suspended in each, until shortly after ovulation. It is possible that as eggs age and remain suspended in their cell division for many years, something happens to cause the chromosomes in them to become sticky or to fail to separate properly. Research has supported the view that older eggs are more prone to errors in cell division with increasing maternal age.

Down Syndrome Awareness Month!

2011-10-02T20:54:00.000-05:00

October is Down syndrome awareness month and because of this, I will be posting a Fact about Down syndrome everyday on Caydence's blog and my Facebook page. Since I am already a day late, I will have two Facts today :)

Fact #1: Babies with Down syndrome are born with low muscle tone. It usually affects all muscles of the body. Low tone can complicate all areas of development, especially gross motor skills such as rolling, sitting, standing, and walking. It takes them longer to develop the muscles in their body to accomplish these tasks. It also results in increased mobility between the joints.

So that is why Caydence is so flexible!

Caydence does not walk yet, but she is starting to stand with assistance and has started to walk along the couch. She still has very low muscle tone though. You can really tell the difference when you hold Caydence and then hold Sydney. Sydney feel like a little Hulk Hogan compared to Caydence. But as we work with her and as she grows and plays she will develop her muscles more and more.

Fact #2: Down syndrome is not a disease; it is a genetic condition. You can't "catch" Down syndrome. A baby has Down syndrome the minute the sperm meets the egg. It's not something a woman can develop during pregnancy because it is present at the moment of conception; as soon as the cells divide. The most common type of Down syndrome is Nondisjunction Trisomy 21 or T21; it occurs because of incorrect chromosome division during meiosis. It results in the fertilized egg having three 21st chromosomes instead of two. The other types of Down syndrome are Translocation T21, Mosaicism (Mosaic Down Syndrome), and Partial Trisomy 21.

Caydence has the typical T21 Down syndrome.

I'll write an update soon, about how Caydence has been doing but, too busy at the moment. Hopefully tomorrow :) Thanks for reading.

Pedialyte Trail Day 2 and 3... Success?!?!?!

2011-06-02T22:26:00.000-05:00

~~~~WARNING, VERY LONG POST AHEAD~~~~~~

Is that a light at the end of the tubie tunnel I see???? Perhaps... we'll have to see. Here is a recap of what has happened since my last post yesterday, on the morning of Day 2...

So when I last wrote, Caydence had fallen back asleep while playing with her toys and it was time for lunch. I woke her up, changed her diaper and got her in her highchair. She was still very sleepy. She didn't really want to eat. She threw her fishstick pieces, she threw the macaroni and cheese I made her, and she threw her Mac N' Cheese puffs. Eventually, I was able to get her to eat half a fishstick and an ounce of her yogurt/pediasure drink. But she was just SO lethargic. She kept putting her head down on her highchair tray and wanting to go to sleep. Then she started crying. That was when I had it! The therapist hadn't called back yet and I totally caved. I hooked up her tube and gave her half the amount of Pediasure she would normally have and the rest Pedialyte. She seemed to perk up a bit, but was still tired, so I then put her down for a nap.

She slept for 3 and a half hours and when she woke up she seemed much more improved. Earlier ,while she was sleeping her feeding therapist called me back and basically just told me that everything sounded pretty typical. She had heard that a lot of kids get really tired and lethargic. She said that it was fine to give her the Pediasure to get her more awake. Since obviously, you can't really feed a kid who is slumped over in their highchair.

So when Caydence woke up, she was a lot more chipper and back to normal. During her next feeding she declined beef broth, smooshed carrots, mac n' cheese puffs, melted chocolate, and yogurt melts. Thankfully, Josh came home after about 20 minutes of me trying to get her to eat and he was able to help me feed her. She eventually ate an ounce of her drink, 5 or 6 cheddar & bacon TGIFriday's potato skin chips, 1 piece of kix cereal, and 2 sweet potato puffs. Then when she wouldn't eat anymore, she had her Pedialyte and water.

That night we went over to celebrate our friend's birthday. I was eating some popcorn and Caydence was watching me intently and started signing "more". Which means she wants something. I thought it was crazy that she would want some popcorn, since it is such a different texture, but I pulled off some big puffs off the kernel and gave them to her. SHE LOVED THEM!!!! She kept wanting more and more and more!. She probably ate anywhere from 1/4 cup to a 1/2 cup of popcorn puffs. She also ate some garlic bread. Now, I know that most of what she's been eating isn't the healthiest. But right now, I am just trying to find anything that she will eat. When we came home she had Pedialyte and water and then went to bed.

Day 3...

When I woke up this morning, I was nervous to see her. I was afraid she would be the weak, shaking little Caydence I saw the previous day. But when I went in her room, she was fine. Sitting in her crib, playing with her stuffed animals with a big 'ol smile on her face. I took her down stairs and got her all set up for breakfast. She declined (uh um, threw) banana, toast, yogurt melts, and applesauce. But I was able to get her to have about 7 big spoonfuls of oatmeal, which equaled about an ounce. And 2 ounces of her drink! This was a big deal, for she hadn't had 2 ounces of her drink in like 2 months! So when she wouldn't take anymore, I subtracted the amount she drank by mouth and hooked her up to have the rest via Pedialyte and water in her tubie.

At lunch time, she again surprised me. She ate practically a whole fishstick (only 2 small bites left), she had 28 mac n' cheese puffs, and drank 4 ounces of her drink!!!! Yes 4 OUNCES! That's the most ever! INSANE!!!! It was awesome. After she wouldn't take anymore. I again hooked her up and gave her Pedialyte and water; (subtracting the amount she took by mouth).

At this point I am thinking... she finally gets it! She is starting to understand that eating makes your belly full. It makes you feel better!

After lunch she took a 3 hour nap. When she got up she ate again. She initially threw the macaroni and cheese I tried to feed her. But I was able to bribe her by making her realize that she doesn't get to drink her drink until she eats a noodle. So she would eat a macaroni and cheese noodle and then get a drink, eat another noodle, get a drink. She caught on quick. She ended up eating about 1/8th cup of macaroni and cheese, about 15 cinnamon maple crunchies, and again 4 OUNCES of her drink!!!!!!!!!!! Awesomeness!!!!

For dinner tonight Josh and I had steaks on the grill, garlic mashed potatoes and green beans. I definitely wanted to have the mashed potatoes, cuz I know Caydence really likes them, so I wanted to be sure she had an opportunity to eat them. We were kind of slow on getting dinner started cuz we were on a cleaning spree when Josh got home from work. But we got things going and dinner was probably 15 minutes away from being ready. All of a sudden Caydence just had a melt down. She just kept crying and crying. I figured she must just be tired and hungry. So I had Josh get her in her high chair and I made up her drink. Boy did she want that drink!!!! As soon as I started giving it to her she was all smiles! She wanted more and more and more and more!

Caydence ended up taking 7 OUNCES OF HER DRINK!!!!!!!! The most ever by far! I couldn't believe it. It was enough, that she didn't even need a tube feeding!!!! This is the first time ever, that she has eaten enough by mouth that we were able to actually skip a tube feeding! I should also mention, that she also ate about 17 mac n' cheese puffs, but wanted nothing to do with the garlic mashed potatoes...which is weird because she's always liked them whenever she's tried 'em. Oh well. I am just sooo happy that she drank that much!!!!!

Tomorrow I'm going to call her feeding therapist and GI specialist to see where we are supposed to go from here. I first need to figure out how many calories she was able to consume; especially today. Then I need to figure out if her thickened Pediasure dranken at 7 oz, is still equal to 7oz unthickened, so figure out if its enough fluid to sustain her. I'm just not sure if thickened Pediasure would equal the same amount as unthickened. Kind of confused... I'm sure we'll need to work with a nutritionist.

On Day 2, I was SO ready to throw in the towel, but I'm glad I stuck it out! It seems cruel, but Caydence has now experienced real hunger, probably for the first time in her life. But I think she is starting to realize just when food is. That food is good, it gives us energy to live, and is necessary! Hopefully she will continue to eat like this, and expand her palette a bit along the way. I'll keep you updated :)

Pedialyte Trial Day 1 into 2

2011-06-01T10:58:00.000-05:00

Caydence has been starting to eat more the past few months. But not enough to eliminate or decrease any of her feedings. Her feeding specialist that she sees recommends that we do a Pedialyte trial with Caydence in order to get her hungry and hopefully, get her to eat more. We called Caydence's GI specialist and they agreed and gave us the directions and amounts for the trial.

What happens is that we replace all her Pediasure with Pedialyte for 3 days. So she stays hydrated, but doesn't get any calories. The Pedialyte is also supposed to keep her electrolytes balanced. We were told that kids don't eat much on Day 1, but by Day 2 and 3, she should be eating a lot more. The GI specialist suggested not giving her any Pedialyte during the day and just give her all the Pedialyte and water overnight while she is asleep. But I know that totally would NOT work since she is a mover and a shaker at night. The tube would probably come out or she'd pull it apart and we'd have a Pedialyte water crib. So I've opted to give the Pedialyte in her tube after ever "meal" like I would with the Pediasure.

Yesterday was our first day on the trial. For breakfast she had a bite of banana and then she spit it out and threw it. After that she had 7 pieces of kix cereal and then started throwing them. She also had 4 spoonfuls of her yogurt/pediasure drink on a spoon and then started spitting it all out. She wouldn't take anything more after that.

At lunch she ate almost an entire fishstick, which is the most fishstick she has ever eaten. This took her a half hour. And she wouldn't eat any of her cooked carrots which she normally likes. She also had a 1/2 oz of her Pediasure/yogurt drink on a spoon.

For an afternoon snack I tried giving her small bits of peanut butter and jelly sandwich, but that was a no go. She just would pull them out of her mouth and throw them. She had 1 goldfish cracker but after that, she proceeded to pull them out of her mouth and throw them. She did take an ounce of her Pediasure/yogurt mixture on a spoon and 7 pieces of bacon and cheddar potatoskin chips and 8 pieces of mac N' cheese puffs.

Dinner was the hardest, because I knew by then she must be starving. Except she didn't want to eat :/ She didn't want any brownie, noodles, or chicken tenders. She took 3 spoonfuls of her drink and then just started spitting it out and smooshing it around in her hands. We tried her mac N' cheese puffs, but she just took them out of her mouth and threw them. She didn't want anything, but seemed fine.

This morning she was VERY lethargic and didn't want to wake up. We finally got her up and got her down stairs in her highchair. She was very weak and sleepy and her hands we kind of shaking. She acted hungry though and I was able to get her to wolf down an ounce of her drink on the spoon, 3 big bites of oatmeal and a half a jar of applesauce. She turned down the blueberry waffle, kix cereal, banana, strawberry/apple puffs, and mac N cheese puffs though. She had her Pedialyte and water and seemed more like her self.

I called her feeding specialist and left a message asking if this is normal. If she should be eating more by now... If I should give her a little Pediasure in her tube to take a edge off. I'm still waiting to hear back. Caydence just fell asleep playing with her toys. And it's time for lunch. Understandabley she is zapped for energy and very tired. For lunch I'm going to try more fishsticks since she seemed to like them yesterday and some mac n cheese. Tonight we're having steak and garlic mashed potatoes for dinner. So I'm hoping she'll eat some of the potatoes since she has LOVED them the past two times we've had them. Maybe she'll have some hotdog and veggies too. We'll see...

It was so hard seeing her so weak and frail this morning. I don't know how much longer I can do this. I guess we'll see how lunch goes, but I might end up having to give her Pediasure. Hopefully my little sleeping beauty will wake up for lunch now...I'll keep you updated...

Wish me luck <3

My New Favorite Pic

2011-05-02T08:29:00.000-05:00

The other day Caydence was playing in her play area and I brought Sydney over and placed her in the bumbo chair so they could sit together. Sydney started crying, so Caydence looked around and found her dolls baby bottle and proceeded to try to feed Sydney with it. It was SOOO adorable! Here's the pic!

Caydence Welcomes her Baby Sister!!!!

2011-04-05T16:27:00.000-05:00

Caydence's baby sister Sydney was born on March 2nd!

She's a SPONGE!

2011-02-28T09:41:00.000-06:00

I'll be 39 weeks pregnant tomorrow and being induced Wednesday morning. I thought I'd better get a post in before things really get crazy with 2 little girls in the house.

Caydence has turned into a sponge, she seems to be picking up everything we've been teaching her lately. It's amazing. Here's some new things she's been doing the past few months.

Can sit up from a laying position
Pivots around in a circle while sitting
Stacks her blocks
Puts together her nesting cups in order
Waves Bye Bye
Feeds her babydoll with a spoon and bottle
When asked "Where's your foot?" she will either grab her foot or grab your hand and put it on one of her feet.
When asked "Where's your hair?" she will grab her hair
When asked "Where's your nose?" she will point to your nose, sometimes her own
When asked "Where's the bear?" she will point to Josh's bear tattoo on his left arm.
When asked "Where's Katlyn?" she will point to Josh's tattoo of our daughter Katlyns footprints on his right arm. Katlyn was stillborn in Feb 08.
Understands the words "In", "Sit Up", "Up", "Stack", "bear", "foot", "nose", "bye bye", "Katlyn", "Elmo", "Grover", "Ernie", "Play", "Mama", "Dada", "Gram Gram", "Ball", "Kitty", "Book", "Spit", "Eat", "Drink", I'm sure there are more, but I can't think of them off hand
Understands the signs "All Done", "Eat", "Drink", "Play", "Ball", "Daddy", "Mommy", "Grandma", "More"
Clearly says "Dada" when she wants her Dad
Signs "More"
She also has been trying to do the hand motions when I sing her the Itsy Bitsy Spider

Right now, she is really into fine motor skills. She's not big on gross motor skills. She doesn't like to be on her stomach or on her hands and knees, so she still isn't crawling, but she gets to where she needs to go by rolling, twisting and pivoting around. We aren't too worried though, it's not like she will never walk.

She was doing pretty good at eating, but now she's poppin a couple more teeth, so she's been rather fussy. Only taking about an ounce at a sitting :P

Anyways, I just thought I type a quick note to let everyone know how's she's doing.

No... this blog has not been forgotten... just neglected :/

2011-01-13T19:01:00.000-06:00

Sorry I haven't written for awhile. But I'm ready to get back on track! Although, I AM 32 weeks pregnant... so I'm sure I'll easily fall behind again.

The Step UP for Down Syndrome Walk was another success this year. Our team, Caring 4 Caydence, raised $2,210.00 for the Madison Area Down Syndrome Society! The only drawback was that we didn't actually walk. The day of the event it was cold and rainy outside, but luckily MADSS had reserved an exhibition hall at the Alliant Energy Center for the activities. There was music, activities for the kids, a silent auction, things to buy, and a not so healthy lunch. Hopefully next year the weather will cooperate and will actually be able to WALK :) Thanks to all our friends and family who came to support us... Kris, Louie, Conner, Autumn, Sabra, John, Gina, Adrianna, Evan, Peter, Charlie, Aunt Millie, Uncle Frank, Cassie, Ciera, Kyria, Melissa, Jim, Olivia, Betty, Josh, Melissa, Jena, Sara, Brent, Jean, Dale, Gram Gram, and Rod. Hope I didn't forget anyone!

Caydence has been doing very well lately. She loves books and has learned to put her nesting cups together in order, and she eats about 6-9 oz of pureed food a day now which is a HUGE improvement. December 14th was her Heart Day, (One year since her open heart surgery). She decided to celebrate by learning to sit up by herself. Now when she is playing in her play area she can role, sit her self up, play with a toy, lay back down, roll some where else and sit up again. We are VERY proud of her.

As I said earlier, I am currently 32 weeks pregnant with another baby GIRL! Her name is Sydney Elizabeth and is due March 8th. Although Caydence was 4 weeks early, so who knows when little Sydney bean is going to arrive. So far everything is looking good. At my 20 week ultrasound they thought they spotted an asd (atrial septal defect) in her heart, but a fetal echo came up clean. Sydney will still get an echo sometime after she is born though, just to be sure.

Have you heard there is a new blood test for Down syndrome? Instead of women having to have an amnio performed in order to find out if their unborn baby has Down syndrome, scientists have discovered a simple blood test that can be performed which can accurately detect Down syndrome. I am personally very anti amnio. 1 in 300 women lose their baby after having an amnio. That is why I have declined them the past three pregnancies. I have very VERY mixed feelings about this new test.

First of all, I think it is great that they can now prenatally detect a baby with Down syndrome by doing a simple blood test instead of risking the baby's life by performing an amnio. Many people want to be prepared and informed before they give birth to a special needs baby. That is totally understandable.
My big worry is that the termination rate for babies with Down syndrome is already over 90%. With a safe and simple test being readily available in the near future, I fear that someday there won't be fantastic little babies like Caydence in the world. There isn't enough education given to mothers who are given a prenatal diagnosis of Down syndrome. Instead, genetic counselors use scare tactics and paint a worse case scenario for the parents. Which freaks them out. Women should be required to meet with their local Down syndrome organization before choosing to kill their babies.

I feel like our society is getting closer and closer to Hitler's eugenics and creating the "perfect" human by weeding out any babies who have Down syndrome or other genetic conditions. How far is it going to go? Will there be prenatal testing someday for autism? ADHD? Homosexuality? Depression? Anxiety? Asthma? Allergies? I know I'm getting a head of myself. But every baby is perfect in the eyes of God. I think we should just let nature take it's course. I don't think it's up to us to decide whether a baby lives or dies.

On a lighter note... Caydence hair is now long enough to get into a ponytail. It kind of sticks straight out but it's still cute. Here's a few pics :)

It's not too late!!!!!!!!!!!!!!

2010-10-12T14:12:00.001-05:00

Next Saturday, Oct 23rd is the Madison Area Step UP for Down Syndrome Walk. We are still looking for people to sponsor our team and also walk with us! Caydence has come such a long way since the walk last year and now it's time to celebrate! To sponsor our team OR register to join us on the day of the walk, you can go to our team page : http://www.firstgiving.com/caydence

Last week our friend Michelle took some awesome pics of us. She is an amazing photographer! Here are some of the great pics she captured...

To see more of Michelle's great photography, visit her website at:

http://www.michellemartinphotography.com/

In other news, Caydence is coming along with her feedings quite nicely. She still cannot drink liquids, but she is eating about 4 oz of oatmeal and pureed sweet potatoes a day. We may have to cut down on her tube feedings to make sure she's not getting too many calories. Is that a light at the end of the tunnel? Will Caydence eat all her meals with her mouth someday? We hope so, but we're just so proud of the progress she's made this far :)

Thanks for reading. <3

Step UP for Down Syndrome Walk 2010!

2010-09-20T13:02:00.001-05:00

Who: Caydence's Friends and Family
What: The MADSS Step UP for Down Syndrome Walk
When: Saturday October 23rd, 2010 from 9:30am - 1:00pm
Where: The Alliant Energy Center Exhibition Hall
Why: To show your support for Caydence and raise money for the Madison Area Down Syndrome Society

It has been a big first year for Caydence and what a better way to celebrate than to Step UP for Down Syndrome! This year the Step UP for Down Syndrome Walk will be held on Saturday, October 23rd at the Alliant Energy Center Exhibition Hall. We are inviting all our friends and family to attend. There will be music, mascots, bounce houses, a balloon artist, face painting, children's craft area, a silent auction, lunch and of course the ceremonial walk! There has been less than ideal weather the past few years, so this year the walk activities will be held indoors, but as long as the weather cooperates, the walk itself will be held outdoors. :)

Last year Team Caring 4 Caydence raised a whopping $2,429.00. So this year our team goal is to raise $2,500! All money goes towards the Madison Area Down Syndrome Society which is an organization that is very dear to us.
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To join us on the day of the walk you can become a Caring 4 Caydence Team Member by registering online. The cost is $20 per adult walker and $10 for walkers 12 and under. Make sure to register by Oct 1st to be guaranteed a Step UP for Down Syndrome Walk T-shirt!

*Go to our fundraising page at: http://www.firstgiving.com/caydence

*Click on "Join this team"

*Also, make sure to print off the Free Parking Pass available at: http://www.madss.org/ before the day of the walk and bring it along :)
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If you aren't able to attend the walk, you can still support us by sponsoring Team Caring 4 Caydence!

*Simply go to our team fundraising page at:
http://www.firstgiving.com/caydence

*Click on "Sponsor Us Now"

We appreciate any amount you are able to contribute! from $1 to $1,000,000 :)
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You can also support Team Caring 4 Caydence by raising money for the Madison Area Down Syndrome Society!

*You can refer your friends and family to our online fundraising page http://www.firstgiving.com/caydence

*If you are already a registered team member you can start your own fundraising page on Firstgiving.

*And you can also raise money offline. A printable pledge form is available at: http://www.madss.org/ You can print it off, along with the Walk brochure and pass it around to your coworkers, friends, and family. All checks should be made out the MADSS, or Madison Area Down Syndrome Society.
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We're looking forward to having a great time and hope you all can attend :)

<3 Jenny, Josh, and Caydence

Defying the Odds

2010-08-26T17:57:00.001-05:00

This morning I got a message from Josh's cousin Chad...

"Hey just started my first day in college and in my education class we have a couple of senior students that help the professors. One of the senior students has Down syndrome and she said that even though she has that difficulty, it doesn't stop her and she is almost done with finishing her major in art education and is on her way to becoming an art teacher. I love her in the class you know, because she has a great personality and brings great energy to the class, that I like. So I just wanted to let you know that because looking at Caydence, I just see her and have so much love you know and seeing that in the class room and you don't hear of that that often is just so great. So I wanted to just throw that to you and send my love.
Love Chad"

I was so glad he shared that with me. Many years ago people believed children with Down syndrome couldn't learn and were useless, so they just left them in their cribs and hid them away. Many were placed in institutions. In fact, in some countries, many children with Down syndrome are STILL placed in institutions.

As advances in medicine came about, like specialized surgeries, hearing aides, feeding tubes etc., doctors were able to help many of the problems that children with Down syndrome are born with and thus prolonging their life expectancy immensely. In 1929 the life expectancy of a person with Down syndrome was 9 years. Now a days it is not uncommon for individuals with Down syndrome to live into their 50's or even older. The oldest person with Down syndrome is currently around 82.

As these children with Down syndrome began to live longer, people began to realize that these children can learn, it just takes them a little longer. And with therapy and more individualized tutoring, they can learn even better. The capabilities of people with Down syndrome are still being discovered.

Unfortunately the problem plaguing most people with Down syndrome later in life now a days is alzheimer's. For some reason, yet to be discovered, people with Down syndrome are much more apt to develop alzheimer's. And they do it at an earlier age. Usually in their 40's and 50's. Hopefully they can figure this out in the future and a cure can be found.

I love hearing stories about individuals with Down syndrome who have defied the odds. So thanks for sharing Chad :)

What's new wiff Caydee?!?!?!

2010-08-17T10:55:00.001-05:00

Yesterday Caydence had her 1st echo and cardiology appointment since her surgery in December! She was amazingly good for her echo. Usually she squirms everywhere and doesn't stay still. But she was sooo good this time. She just laid on the bed and let the technician do her thing. I was amazed :) YAY Caydence. Then later we met with her cardiologist. She still has a very small VSD (hole between her bottom chambers). But it is very little, they can't even hear it with a stethoscope. It's something that they will keep an eye on. It may close on its own as she grows. If it doesn't close they will wait until she is much older to do another surgery.

Hopefully it will close :) She actually doesn't have to see the cardiologist and have another echo for a whole year!

The big question that we hear at least three times a week is "Is she eating yet?!?!?". I have to admit, this question drives Josh and I CRAZY!!!!!! She will eat someday, but it's gonna take some time. Like a year or two... or more! Progress is very very very slow!!!!

For a while Caydence was taking about an ounce of baby food a day. Then when we switched her to a toddler formula, she started throwing up a little which side tracked her and she didn't want to eat anymore. It doesn't help that she is getting 4 molars, 1 or 2 bottom teeth and a couple upper teeth all at once.

The good thing is that she is fine with putting things in her mouth. Mostly her fingers and toys. In order to make eating "fun". We have stopped trying to spoon feed her for awhile and instead just doing a lot of oral motor stimulation. Then before her baths, she gets to sit in her bumbo chair in the bathtub and play with her food. When she puts it in her mouth herself, she is ok, she still spits it out a bit, but the important thing right now is getting her exposed to tastes and not worrying about the amount she is taking in.

Since we've been using her new hip helpers, she has definitely been keeping her legs closer together. And the best part is that she doesn't seem to mind wearing them :)

Nothing much else is new. It is finally cooling off here in Wisco, so I'm looking forward to taking Caydence on walks again. On a side note, for those who haven't heard already... Caydence is going to be a big Sister! It was a little unexpected, but we are very excited :) I am currently 11 weeks and the two ultrasounds we've had so far, show that everything is looking good. The little bundle is due to make their appearance around in early March 2011. However since Caydence came 4 weeks early, who knows... maybe it will be in February, we'll just have to wait and see :) Stay Tuned <3

BTW - If anyone has an exercise ball they aren't using anymore, we could really use one for Caydence's therapy!

I'll leave you with a cute pic of Caydence and Daddy <3

The Down Syndrome Creed

2010-07-28T10:38:00.000-05:00

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Save the Date!

2010-07-21T09:03:00.000-05:00

The Annual Madison Area Down Syndrome Society's Step UP for Down Syndrome Walk is scheduled this year for Saturday October, 23rd. This year there is both indoor and outdoor space reserved in the event of inclement weather. Last year it was freezing and we actually had flurries! We are inviting all our friends and family to come walk with us, so save the date and stay tuned for more information :)

Oprah

2010-07-20T09:15:00.001-05:00

Me and my fellow parents of children with Down syndrome are writing the producers of the Oprah Show in order to encourage them to create a show devoted to Down syndrome. A few parents have written in the past and not heard a response. Now we are banding together to make this happen.

Here is the letter I sent...

Dear Oprah Show,

My fellow parents of children with Down syndrome and I are banding together to educate the public about Down syndrome. We would love if you would help us in this effort by devoting a show to our cause. Did you know the abortion rate for babies diagnosed with Down syndrome prenatally is a staggering 97%?!?!?! It makes me physically sick to think about this statistic. You see my first baby was stillborn at only 28 weeks gestation. I later found out it was due to an underlying blood clotting disorder, I wasn't aware I had. When I got pregnant again 8 months later, I was overjoyed. At my 19 week ultrasound I found out my daughter had a heart defect (AVSD). It is very common in babies with Down syndrome. We were told our baby had a 60 - 70% chance that our baby had the genetic condition. The only way to know for sure was to have additional invasive testing. My husband and I immediately declined the testing. If she had Down syndrome that was fine with us, she was our baby. Meanwhile, we decided to educate ourselves about Down syndrome in the event our daughter had this condition. We learned a lot, and when our daughter Caydence was born in June of 2009 and we found out she did have Down syndrome, we were prepared. It seriously didn't phase us; after losing our first daughter, we realize how precious life is and we were just so happy to have her with us. Sadly, many women who find out their child has Down syndrome are devastated and often go through a mourning period. The social stigma of Down syndrome is deeply rooted in our society. Now, as parent of a child with Down syndrome, I want to devote my life to changing this social stigma.

If you would like to help us in our effort, please submit your letter at: Oprah Show Submission Site

Sum Sum Summertime!

2010-07-19T11:48:00.000-05:00

Well, Caydence had her huge birthday bash last month. We had LOTS of friends and family come to help celebrate. Here are some pics from her big day...

She did pretty well with her cake. She got a couple tastes in. I am purposely omitting the pictures where she got a little too much cake in her mouth and starting crying/screaming. Luckily she quickly recovered once we sung her favorite song "If you're happy and you know it" :)

Caydence has been doing very well as of late. Her newest trick is sitting unassisted and she is getting better at it every day. The main thing she is lacking is the ability to hold herself up with her arms. I try to work with her, but she just doesn't like putting weight on her arms.

We took Caydence to the big 4th of July Parade a couple weeks ago. She had a really good time before the parade started, but she wasn't a big fan of the honking trucks, fire engines, and marching bands. So we ended up leaving after only a half hour. Maybe next year :)

Right now we're waiting for her hip helpers to come in the mail. They are spandex shorts with the legs sewn together. Caydence often sits with her legs wide apart and bent like a frog. The hip helpers will help her bring her legs together and kind of straighten out, which will help with crawling, standing, and eventually walking. Her OT made her a pair of legs bands out of a piece of elastic, but Caydence likes to take them off. The hip helpers definitely won't be as easy to remove. I'll be sure to post a pic of Caydence in her nifty shorts as soon as they arrive :)

Last week Caydence developed a blister under/next to her button (feeding port). This weekend it kind of deflated and last night it was bleeding a little. So this afternoon we're going to the GI doctor to have it looked at. We're thinking that she is just out growing this button, so she needs a bigger one. We'll see. I'll keep you posted :)

Caydence is our Rainbow Baby!

2010-06-15T17:52:00.000-05:00

In some circles, babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm. "Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.

Happy Birthday to Caydence!!!!!

2010-06-11T14:10:00.000-05:00

Yesterday my sweet baby girl turned 1!!!!

As I said in my last post (many months ago), we've been waiting for this day since before she was born. Caydence has come so far in the last year and we're so proud of her. She made it a month in the NICU, then had months of doctor appointments, blood draws, xrays, echos. She had OHS in December followed by a 6 day hospital stay. G tube surgery in February. Got her button placed in April. Now things are finally calming down. I guess that's why I haven't posted much lately. Just enjoying life now :)

This Sunday we are throwing her a big birthday party to celebrate :) I promise to post lotsa pics.

Caydence has been getting better at eating, but still has a ways to go. She will definitely eat all her food orally eventually, but it might take a year to get her acclimated. The good thing is, is that since she's not throwing up anymore, she's starting to associate tasting and eating as "a good thing". A couple days ago she ate a whole ounce of squash! It will be interesting to see what she thinks of birthday cake :)

Currently she weighs 15 lbs 13 oz and is about 27 inches long... or 2'3" if she were standing :) She sees a feeding specialist every other week. And her OT from Birth to 3 comes in once a week to work with her. Both are helping a lot.

Caydence is close to sitting by herself, but is still a bit wobbley and likes to fly backwards a lot :/ You see, most children with Down syndrome are born with really low muscle tone, so it takes them longer to build up that muscle they need to sit, crawl, and walk than typical children.

Caydence's newest tricks are clapping and signaling that she wants the ball when we're rolling it back and forth. Can't wait to see what she'll do next :)

Stay Tuned <3

Updates Galore!

2010-03-17T22:22:00.005-05:00

I am sorry it's been so long since our last post. I know many of you have been waiting for updates. I'm gonna try to start posting more often. Time just seems to get away from me :P
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Life with a new tubie...

Since we wrote last, Caydence has adapted to her new tubie wonderfully :) Having her hands free has opened a whole new world for her and she is constantly reaching for toys, sucking on her fingers, and exploring her world. It's also so so nice not to have a tube taped to her face. Her cheeks are finally healed and now we can take her out without people constantly asking "What's wrong with her face?!?!?" "What's that tube for?!?!?" :P The peg tube is much more discreet; we can just tuck it in her shirt or pants. But not for too much longer because she will be getting her MIC-KEY button sometime in mid April, which will be nice because then she won't have an actual tube hanging from her tummy all the time. It will just be a port and then the tube will just be hooked up when she's eating.

Speaking of eating... Caydence is still not into the whole eating thing. I was trying to bottle feed her twice a day and spoon feed her baby food twice a day, but I think it was over stimulating her a little. So now I'm only doing each one, once a day. Either way, she still isn't doing the greatest. She usually ends up just spitting out any food or milk that gets in. Then she gets mad and yells at me. We're looking into seeing a feeding specialist.
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Getting Stronger...

Other than problems with feeding, Caydence is doing great! She actually rolled over from her back to her tummy for the first time yesterday. She had been trying for months to get from her side to her stomach, but she would always get caught up on her arm. Now she's finally got enough strength to roll herself over it. She just needs to figure out how to get from her tummy back to her side again.

Caydence is also putting weight on her feet now. I've been doing exercises to strengthen her legs the past month and it has really been helping a lot. Her legs used to be like two little wet noodles, but now they are getting much stronger and more sturdy. She still can't sit unassisted, but we're working on it. She can do the tripod position for a couple seconds before her arms give way. And she is doing much better in her bumbo chair. This past week is starting to learn to push herself up with her arms when she's on her tummy. But we still got a little ways to go.
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Teefers?...

I could be mistaken, but I think Caydence might be getting ready to pop her first tooth. Although, she is getting over her first cold, she has had a low grade fever the past couple weeks, constantly biting/chewing on her fingers, drooling and making biting movements. Who knows though, maybe it's just one of those things, cuz I still don't feel any toofers in there.
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Birthday Fun...

Since she reached the 9 month mark last week, I have started planning her first birthday party. It's a date we have been looking forward to since before she was born. When we found out about her heart defect, her surgery was kind of like a dark cloud looming over us. One of the things that kept us going was the thought of her first birthday party. We just kept telling ourselves, that if we can just make it to her first birthday, everything will be gravy! Her heart surgery will be over and we won't have this black cloud of death following us around! After everything she has had to go through her first year of life, her first birthday was kind of like a beacon of hope in the horizon.

The main problem I am having right now is figuring out what to do for her birthday cake. Most kids get their own little cake for their first birthday and dig in and eat it while getting it all over themselves in the process. But Caydence won't eat... And the thickest food she even attempts right now is stage 1 or 2 pureed baby foods. So I'm not too sure what we're gonna do about that. Maybe the feeding specialist will have some ideas... Anyone got any suggestions?

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Spring has Sprung!...

The weather has been absolutely gorgeous here lately! It's been so nice to get Caydence out on walks in her stroller the past couple days. Since we've been cooped up in the house all winter, the change of scenery has been more than welcomed. The warm weather and blue skies have made me soo happy. I finally feel hopeful that things are going to be alright :)

Our little peanut is home!!

2010-02-11T22:13:00.006-06:00

Daddy here:

Well, as most of you probably know by now, our little Caydence had surgery to put in a new feeding tube on Wednesday and she came out of it like a champ. The surgery itself took less then a hour and all went well in surgery. After the surgery was complete the doctor came out and told us that it went well and then she gave us pictures of the inside of Caydence's stomach. I know, kinda weird huh? But it showed us what the feeding tube looks like on the inside so I guess it was helpful. But then we got to go see our little girl in recovery and after 2 hours there, we got to move up to her room. Yesterday afternoon she wasn't feeling so hot but who can blame her, she just went through surgery. But this morning, Caydence was acting like her old self again.

Shortly after arriving in her room, the nurse started Caydence on a slow feeding of Pedialite and after a few hours of that, she was started on a slow feeding of regular milk. For her to be able to come home today she had to handle her normal feeding amount and normal feeding schedule and she was able to do that perfectly, so, here we are at home now.

Here's a picture of Caydence with her new tube. As you can see, it comes out of her stomach and has a couple of different ports for us to use. The really nice thing about this tube is that we can hide it under her clothes so she can't have access to it because I'm sure she would try and pull on it if given the opportunity, and, no one else has to know that she has a feeding tube.

All in all, the stay wasn't bad for her this time. She only had to remain there over the night and we were able to bring her home this afternoon. At this moment she's resting peacefully in her swing with no real effects from her surgery. We're giving her a little tylenol for the possible pain but other then that she's the same. Well, the same except for her new found toys, her HANDS!!! Yeah, since this morning she can't seem to get enough of them. At one point I was worried that she might be trying to eat her hand because she had all of her fingers in her mouth. I love the fact that she's enjoying having her hands out of her mittens and I know I'm going to LOVE the fact that we will never need to put a NG tube in again. And, we get to see our daughter's face with no tape or tube on it which is so cool also.

New Tubie :)

2010-02-10T13:47:00.000-06:00

Just a quick note. Surgery was a success! It only took 30 minutes and then they put her in recovery. She had to stay there for a couple hours though because her O2 sats were low and they had to wean her off oxygen before they moved her to her room. She was in a lot of pain in discomfort when she came out of anesthesia, but she's good now and resting peacefully. Hopefully we can go home tomorrow :)

Our little short stack

2010-02-09T16:08:00.004-06:00

I just got a call from the hospital a little bit ago and they told me that Caydence's surgery is scheduled for 8:30 tomorrow morning. I can't wait to get rid of that silly ng tube for good! I was worried the doctor would cancel the surgery because Caydence has been sick the past week with the sneezers and small fever. But the anesthesiologist wasn't worried about it. He said he would only be concerned if her fever was 101 or higher or if she had a bad cough or trouble breathing.

Meanwhile, Caydence has been taking her mittens off every 5 minutes the past few days. She really wants to suck her thumb, but sometimes when she puts her fingers up to her mouth she yanks on her ng tube as well, so I've had to keep putting her mittens back on. This morning I had enough! I felt kind of bad, but... I taped her mittens on with 2 inch masking tape. :P

She thought it was pretty funny at first, but then she realized she couldn't take her mitties off and she wasn't as pleased. We keep telling her that pretty soon she can have her hands free all the time and she can suck and chew on her fingers all she wants. :)

Josh wanted me to write about the unfortunate poo fiasco I had this morning. I won't go into too much detail, but let's just say that there was poo EVERYWHERE! All over Caydence; all over me, all over the changing pad, all over the bed sheet and all over the mattress! The changing pad and bed sheet were casualties of war, but fortunately me, Caydence, and the mattress all survived after some thorough cleaning.

Over the weekend I finally put the jump jump together that we had bought Caydence with her Christmas money. She has been holding her head up pretty well lately, so I was excited to get her in it and see what she thought.

Unfortunately, our little short stack can't reach the floor, even at the lowest setting :(

I propped some books under her, but she isn't putting any weight on her feet yet, so I think it's gonna take sometime for her to actually JUMP in her jump jump :P

On a good note, Caydence went to the cardiologist yesterday and although she screamed bloody murder throughout her entire echo, her heart is looking good :) We also got the green light to lift her under the arms again.

Anyways, thanks for checking in on us :)

I'll write tomorrow afternoon to let you all know how her surgery goes in the morning.

Another Surgery

2010-02-03T20:32:00.002-06:00

Caydence still isn't doing well at all with bottling. We were rather optimistic after her heart surgery since she no longer had the gag reflex, but she just can't seem to grasp the concept of sucking on her bottle. So Caydence will be having surgery next Wednesday, February 10th, to get a G-tube.

The NG (nasogastric) tube that she has now is really only meant to be a temporary solution, like 2-3 months and she has had it 8! The G-tube placement is a minor surgery and will take about an hour to complete. Caydence will be put under general anesthesia and will require a 1 to 2 night hospital stay just to make sure it is working alright.

The kind of tube she will be getting is called a PEG tube. It will remain in place for about 2 months which will allow the opening to heal. Then she will go in for an outpatient visit at the sedation clinic and get a balloon type G-tube put in it's place. It's a type of tube that is held in place with an inflatable balloon. They lie flat against the skin and the is no external tube attached. It kind of resembles the inflation valve on a beach ball.

Josh and I are nervous and excited all at once. Nervous because, although it's a minor surgery, it IS still surgery! And excited because once she has the G-tube, Caydence doesn't have to keep her hands in mittens all the time anymore and we won't have to worry about her pulling out her tube like she did yesterday. She won't have to have a tube taped on her face all the time. Her little cheeks can heal and we can see her whole face, SANS TUBE! :)

Meanwhile, Caydence is learning to eat baby food. Thus far, she has experienced rice cereal, prunes, and sweet potatoes. She's seemed to enjoy them all, but I can't really tell how much she is actually swallowing. A lot end up on the bib, her hands, and face. Someday she will learn how to drink from a cup and suck on a bottle or straw, but it will take some time.

Anyways, wish us luck! <3

Sweet Baby Gabby

2010-01-21T08:54:00.004-06:00

A few weeks before Caydence's open heart surgery, I was on BabyCenter looking at posts on their Down Syndrome board. To prepare myself for Caydence's surgery, I was reading posts by other parents describing how their children's heart surgery went.

I came across a mother whose 4 month old daughter had just had the same surgery Caydence was to have. Unfortunately, her daughter Gabby was having complications and the next day I found out she had passed away. I was devasted for this poor family and obviously very distraught at the thought of Caydence's upcoming procedure. I didn't tell my family about Gabby because I didn't want to scare them. But her story stayed with me and I thought about her often.

This morning I saw a video that Gabby's mother had made in remembrance of her daughter. It's not just about the loss of a beautiful baby. It is also about raising awareness about Down syndrome. 90% of babies with a prenatal diagnosis of Down syndrome are aborted.

YES... 90%!!!!!

So many unborn babies with Down syndrome are killed simply because their parents are too scared to take care of them. They think that caring for their child will be a burden or are worried about what other people may think of them. They want to take the easy way out.

Every life is precious and every life is sacred. Aborting your child just for the simple fact that they may have Down syndrome is simply ridiculous. But so many people are uneducated and don't even understand what Down syndrome is.

The potential of children with Down syndrome has been underestimated for centuries. But today, with advanced medical care, early intervention, better education, and greater social acceptance, children with Down syndrome are functioning at increasingly higher levels.

As Gabby's mother states, "Every life has a purpose. Gabby's life had a purpose."

To learn more about Down syndrome, check out the book "Babies with Down Syndrome" or visit the National Down Syndrome Society Website www.ndss.org

Thank you for taking the time to read this post and God Bless Baby Gabby!

Rice Cereal & Pigtail Fun!

2010-01-14T06:28:00.008-06:00

Caydence's hair is just long enough for little pigtails now! She looks so cute in them too. Since I've written last, her incision has continued to heal up very nicely. She only has one little scab at the very top.

The other day I tried her out in her high chair for the first time. She seemed to like it pretty well :)

We had been wanting to expose Caydence to solid food for quite awhile, but her doctor's had wanted us to wait until after her surgery. When we met with her pediatrician a couple weeks ago he thought it would be alright for us to start giving her solids. So yesterday Caydence had her first try at rice cereal! It's kinda funny :) Enjoy!

Caydence's New Beginning

2009-12-29T21:36:00.013-06:00

Yes, I'm finally posting again! Got a little side tracked once Caydence came home.

First of all, Josh and I would like to say a huge THANK YOU to the staff at UW's American Family Children's Hospital for taking such good care of our daughter and giving her a second chance at life. We would especially like to thank Dr. Hennein, Gene Kenny, Dr. Wilson, Jayme Frank, Dr. Proctor, Dr. Brazelton, Dr. Wilhelm, Dr. Neumann, and PICU nurses Jill, Jessica, Megan, Karie, Karen, and Mary. There are many more, but we can't remember all their names :) Thank you so so much! We are so incredibly thankful that the surgery was a success and we have Baby Caydence back home with us.

Since she has been home, Caydence has been a little cranky, but is doing really well. She's off all the meds for her heart and as you can see, her incision looks great! You would never guess she had heart surgery 2 weeks ago. I looks like it's been healing for months. Her weight is down a little, so they are having us fortify her milk a little more so it is now 26 cal instead of 24 cal. Hopefully her weight will be up next week when we see her Pediatrician. She has also been having some problems... pooing... but I guess the anesthesia can slow the intestines up. So hopefully that will get better.

If you remember, before her surgery, Caydence had a really bad gag reflex that developed when she was around 3 months old. Whenever we tried to get a bottle or pacifier in her mouth she would gag and cough really bad and put up a fuss. Now that the surgery is over the gag reflex is totally gone. It is amazing! She lets us put things in her mouth now! The only problem is, is that she doesn't remember how to suck because it has been sooo long. She just kind of pushes the nipple around in her mouth and will sometimes take maybe 1 or 2 sucks. It's gonna be a long process, but we are determined to get her back on track. So for now, we are holding off on the g-tube surgery, to see how she does.

Santa was very good to Caydence on her 1st Christmas! She got MANY MANY toys! Believe it or not, I think there are even some toys missing from this pic!

Thanks to Great Aunt Millie for the toy shelf!

Here's Caydence meeting her new penguin friend

My cousin Charlie got us this blanket with Caydence's picture on it from Costco. I think it's funny because she is SO BIG! She's like godzilla baby LOL!

It was the best Christmas, because we had our daughter back. Thank you all so much for your prayers. We are truly blessed!

Quick Update

2009-12-21T03:14:00.004-06:00

For those of you who are not our friends on Facebook, we thought we'd better give you an update! Caydence came home Saturday afternoon and is doing well. We had a couple small issues which we will post about very soon, but other than that she's doing awesome! It's the best Christmas present in the world! We couldn't be happier <3 Sorry for the delay in sharing the good news :)

Post Op Day 4

2009-12-18T20:57:00.003-06:00

Sorry for the late post. Caydence has had a very long cruddy day. It started out with getting her blood taken; TWICE! They had been taking blood from her arterial lines, but she got those removed yesterday, so they had to draw blood. As you know, if you read last Friday's post, Caydence has really little veins like her Mommy, so people always have a hard time drawing blood.

After they took her blood, she had to get her pacing wires removed. Pacing wires are small wires that are inserted into the heart during surgery. I know it's kind of gross sounding, but they hung out of her chest following surgery. They were placed in the event something went wrong and they needed to hook them up to an external pacemaker. Since everything went well and her heart is working fine, they removed them. I guess they are just easily pulled out, but Josh and I didn't want to wait around and see them do it. It was worse enough watching when she got her chest tube pulled out yesterday morning.

So after she got her pacing wires removed, the nurse decided to take off all of her bandages from where her arterial lines were and one of her old IV sites. Caydence hates getting tape ripped off her skin, so that obviously didn't make her happy either. Then the doctors decided that they wanted Caydence to poo since she hadn't gone yet, so they induced poo. I don't think I need to go into detail on that one.

After the poo incident, we asked the nurse to give her a bath. She hadn't had a bath since she'd been at the hospital and still had iodine stains on her skin in some places. Unfortunately, we had a crappy nurse today, so she was all cranky about it, but did give her a bath. She also got her Flu shot and RSV shot.

Then this afternoon, she started throwing up during her feedings. The first time it happened, we kind of dismissed it as just one of those things. Then she started getting really spitty and not swallowing. She would just let the spit drool out her mouth. With her next feeding, she threw up twice within 10 minutes of the start of it and kept acting like she had stuff coming up in her throat, like reflux. She was also really hot and sweaty, but had a normal temp.

So we had the doctors and nurses come look at her and they couldn't really think of what could be wrong. They thought that maybe there was some obstruction in her stomach or her ng tube was placed wrong. One doctor even though that maybe she just didn't know how to swallow her spit because she had Down syndrome. Stupid! We kept telling them that this wasn't like her and she didn't usually drool and throw up like this. They decided to stop her feedings, put her back on IV fluids and order an xray.

After a while I came to thinking that she tolerated her feedings fine this morning. So... what has changed since this morning??? Flu shot maybe? So I threw that one out there. I don't know why they hadn't thought of that already. They said it was a possibility, but usually reactions to the flu shot aren't this severe. But they decided to give her anti-nausea medication and tylenol anyway. The chest xray came back fine.

This morning, they said that she would be sent home tomorrow. But with this drooling and throwing up this afternoon and tonight, who knows. The doctor just came in and told me that he wanted to start her feedings again at 11pm. Hopefully she doesn't throw up again. She is still drooling a lot, but she just gave me a couple BIG SMILES! So I guess that is a good sign. She hasn't smiled since before her surgery. Unfortunately Josh has already went to bed in the sleeping room, so he didn't get to see it.

Wish us luck <3

Post Op Day 3

2009-12-17T19:50:00.008-06:00

Busy, busy day today! Caydence got her chest tube removed, the arterial line in her leg removed, the arterial line in her neck removed, her catheter removed, and her oxygen was removed for awhile, but they had to put it back in.

Another big step was that we got to hear her voice again today. Yesterday she didn't make any noise at all. They said that her throat was probably sore. Today with all the tubes coming out, she was crying; although it is usually upsetting to see her cry, it was so nice to hear her again.

Once she got all her tubes pulled out, the speech therapist came to work with her. Caydence still isn't sucking on her bottle, but she isn't gagging either. Unfortunately, they had to put the NG tube back in, but her gag reflex doesn't seem to be bothering her nearly as much as it used to. The speech therapist is coming back tomorrow and we're gonna work on it some more.

This afternoon, they brought Caydence in a bouncy chair she could sit in and strung toys across her bed. She really liked it a lot! I think it made her think of her bouncy chair back home <3 She liked it so much, she fell asleep playing with her cow :)

They have been taking Caydence on and off oxygen all afternoon. Sometimes her saturations dip down into the 80's and other times they will be fine. Her doctors think she may have some junk still left in her lungs that she needs to cough up, but children with down syndrome sometimes don't cough as much as they should. They did an extra chest xray this afternoon, but we haven't heard on the results.

Thank you sooo much to everyone who has been sending us cards and gifts at the hospital. Caydence is accumulating quite the assortment of stuffed animals :) We'd also like to thank everyone who has been following her progress and cheering her along this week. She is such a little trooper and is so blessed to have so many people caring about her.

Post Op Day 2 - Part 2

2009-12-16T14:56:00.005-06:00

Caydence's fever is finally gone. Hopefully it won't come back! We were kind of worried for a while there, but it is looking better :) She is still drifting in and out of consciousness, but it's probably for the best, cuz she needs her rest! They set up a mobile and hung some toys across her crib so she has something to look at when she is awake though.

The Hospital bought toys for all the children and this afternoon Santa came around to the rooms to deliver them.

Caydence got a V-tech Move and Crawl Ball, some Peek a Boo Stacker blocks, and a reindeer stuffed animal.

The hospital stay has been great so far. All the doctors, nurses, and staff are so nice and they have been very accommodating. We have been very fortunate. We'll be sure to post updates on her progress as she continues to recover. Thanks for checking in :)

Post-op: Day #2

2009-12-16T12:19:00.003-06:00

Daddy here:

Well, we're into day number two after the surgery and Caydence is doing well. This morning she had her breathing tube removed and she seems to be doing well with that, but they're keeping an eye on swelling in her throat so she doesn't have to labor so much to breath on her own. She also has a little bit of supplemental oxygen being given to her to help push her in the right direction but overall she's doing well without it. And an added perk to having the breathing tube out is that she was allowed to wake up now.

It was quite the feeling to finally see her eyes open up after 2 days of starring at her laying in her bed without making any real facial expressions. She's still a little sleepy but they said that as tubes and wires are removed she'll start to get more and more energy back.

Other then the breathing tube being removed, the only other thing that we've been worrying about is a high fever. Caydence has been fighting a fever of around 103 degrees since last night but I think that the staff may have it licked now as her temp. is dropping. She's currently at 100 degrees and slowly falling. The nurse turned the temp. of the room down to help in that battle which doesn't bother me but I think Jenny is slowly freezing. On a bright note, we no longer need a refrigerator to keep our drinks cold.

Eating has had it's ups and downs for us also. As we said before, Jenny can now order what she's wants from the room service menu but I'm stuck to fend for myself for breakfast and dinner typically. So, yesterday for breakfast I had a Mountain Dew and 2 pop tarts; the breakfast of champions. But for lunch, the Ronald McDonald house brings all of the parents bagged lunches to help out which is really nice. They consist of a sandwich, fruit, water, chips and a cookie, so I'm not starving. And last night a local restaurant gave everyone barbecued brisket, noodles, cooked carrots and girl scout cookies. I'm not sure as to what restaurant did this but I want to thank them because this was a very nice surprise.

Other then that, there isn't much going on, just sitting her and watching her recover. Anyway, I'm sure we'll post a little bit later with more updates.

Until then,
Take care

Post Op Day 1

2009-12-15T08:27:00.005-06:00

Well, we're all settled in the PICU now. The cafeteria food here is really good, but expensive. Luckily, we found out that since I'm still "pumping" they will pay for all my meals, so I can order whatever I want for free and they deliver it to the room. Josh isn't quite so fortunate, he has to fend for himself. They are supposed to have the family kitchen "stocked" with some basic food items, but so far all we've found is an apple and some milk...

Yesterday afternoon while we were waiting for Caydence to get moved to the PICU we met a family who was waiting for their niece to go into surgery. She was supposed to have heart surgery right after Caydence. The little 7 year old girl needed a pacemaker and they didn't know what was wrong with her. Last night we found out that her surgery didn't go as well and she is currently on life support and being transferred to Milwaukee for a heart transplant. I feel so so bad for the family, but at the same time am so happy it isn't Caydence. Caydence is doing well for the most part.

When she came into the PICU she was really cold so they used a machine that blows warm air to warm her up. Now she is running a fever, but they said that was normal.

We were going to stay at the Ronald McDonald house last night, but when we were thinking about going over there Caydence's leg turned kinda purple and they thought she may have a blood clot. They did some tests on her leg and listened to the blood flow. After a couple hours they determined it was a combination of the arterial catheter running in her leg and her blood pressure. As they raised her blood pressure returned her leg returned to normal.

So, last night we were fortunate to reserve a sleeping room with a twin bed in it, so we ended up switching off sleeping in there while the other one slept in the room. All things considered, she's doing fine and recovering nicely. We'll keep you updated with more posts when we have more information.

Surgery Day

2009-12-14T11:35:00.005-06:00

6:15 - We arrived at the Children's Hospital. Caydence was in a very good mood and really happy and rambuncious.

7:40 - Caydence was given some tylenol and some medicine to make her a little sedated.

7:55 - Josh took Caydence back to the operating room. They gave her some anesthesia and she was put to sleep.

10:00 - It took them 2 hours to get her all hooked up and ready and we were notified that they had made the incision.

11:10 - She was put on the bypass machine.

12:50 - We got an update from the nurse that she is still on the bypass machine and surgery is going well. They estimate they will be able to take her off in about an hour and then close her up and move to recovery.

1:30 - We just got word that she is off the bypass machine. They are doing some testing to make sure the surgery is working well and are expecting to close her up shortly!

3:45 - Surgery was a SUCCESS!!! Josh and I just went in to see her :) She is still on the ventilator to give her lungs a rest. So they have her heavily sedated. But plan on taking out the vent in the morning. They were able to use her own tissue for the repair and so far it is looking great. We still have a long way to go and I'm sure it will be a rollercoaster, but as of right now, everything looks GOOD!

Keep Caydence in your prayers and check back for updates...

Wow, talk about a trying day!!

2009-12-11T20:25:00.005-06:00

Daddy here:

It's been awhile since I've posted about anything; I typically leave this stuff to Jenny, but I was asked to blog today so I'll do my best.

Today was Caydence's pre-surgery workup,actually it was the last checkup before her surgery on Monday. We started the day at 8am and it seemed to go on forever which would have been fine if everything had gone as it was supposed to....but I'm getting ahead of myself so let's go back to 8am.

We first met with the learning center nurse who informed us to how Monday would go...from when to arrive, what will be done and when, how she'll look...everything. It was very informative but she tended to error on the side of the worst case scenario which was hard to listen to. I understand it was her job to prepare us for what "could" happen but didn't she also think about how we may be looking on the bright side and hoping for the best case scenario? I'm just saying....

After we left the learning center nurse we then met with the cardiac surgery nurse practitioner to, again, cover what would happen the day of, when to show up, how long it would take...etc..(do you see a trend forming here?) She then gave Caydence a quick exam and ordered a few tests, consisting of x-rays and blood work.

So, now we're off to the lab area and receive x-rays and blood work. The x-rays go off without a hitch, which was about the only time this would happen.(My thanks goes out to the x-ray techs, nice job.) Then comes the blood work and boy did Caydence scream. She hates getting blood drawn but we got through it and eventually Caydence stopped crying. After that, we then got a "tour" of the waiting area and operating room. I put "tour" because we saw most of it on powerpoint because of the H1N1 outbreak. But it was helpful and I'm glad that we saw it.

From here we were chased down by nurse practitioner again to tell us that they forgot an x-ray and some of the blood work didn't go through so it had to be done again. But before that, we had to go and see the anesthesia clinic who...again..tell us how Monday will go, when to show up, how long it will take...blah blah blah.., oh, did I forget to tell you that this person told us all of this from the comfort of her janitorial closet or at least that's the size of her office. Seriously, if I had to work in that office, I would ask to be transferred to the cafeteria but more power to her for hanging in there. Now we go back to the lab to REPEAT the blood work and add x-rays and it's here that it gets weird for a moment.

While waiting for the pager to go off we were ambushed...musically ambushed that is, by a huge group of renaissance choir members...who filled the waiting room with hope and glee...at least that was what they were attempting to do. It was a little weird to see but it took our minds off of the day, if only for a short while. Anyway, back to the labs.

Again, the x-rays went off without a hitch so again, my hat off to those x-ray technicians, they made it seem so effortless. I can't say the same thing for the blood work techs. Actually I could say a lot about them but it wouldn't be appropriate for this blog so I'll try to sensor myself. These...people..were by far the worst experience we've had in that entire hospital since we switched hospitals. They attempted to draw blood 2 different times with 2 different techs and they both FAILED horribly. The first one stuck Caydence with the needle, and unable to locate the vein that she felt, seemed to deem it necessary to "dig" around for it. Dig is the best word I can come up with because that is what most closely resembled what she was doing. All it looked like was her poking around, hoping to hit something that would resemble a vein. And after what I would guess was about 5 minutes of her digging around with Caydence screaming her little head off, she then admits "I can't seem to find the vein, so I'm going to get someone down her that will, she's really good at these things." So we leave to room and struggle to console our now inconsolable child and after awhile we get her to sleep from pure exhaustion from screaming for so long. It was at this point that we met the next....person. Jenny couldn't remain in the room this time so I sent her out and I then had to witness this new...person..."dig" around in much the same way for roughly the same amount of time with NO success!!! Did I make myself clear there, she had NO success!!! Now, I understand that drawing blood in an infant can and probably is more difficult then on an adult but being that we were in a CHILDREN'S HOSPITAL don't you think these...people..would have a better grasp of this task then the average blood drawing tech? Anyway, after 2 techs tried, no blood was drawn and they both gave up and told us to go home...thanks for hurting my daughter, upsetting my wife and severely pissing me off for nothing.

Oh yeah, on the way home we got a call from the hospital...to inform us to when we should get there on Monday, how long it will take, when to stop feeding her...again, blah blah blah...and here is where the day ends. We met some very..interesting..people and we were WELL informed to when we have to show up on Monday, when to stop feeding her and how long it will take.

We will keep everyone up to date on how things go on Monday. Keep Caydence in your prayers.

Until then, take care.

Yelling Caydence

2009-12-03T02:16:00.001-06:00

New Discoveries and Caydence gets slipped a Mickey Finn

2009-12-02T20:57:00.004-06:00

Caydence has been very cranky the past week or so. We arn't sure exactly why. It could be a number of things actually... heart failure, teething, reflux, gas... who knows. During this time she has been doing a lot of fussing & crying and has now figured out that she can yell even when she is not angry. She seems to like it...ALOT.

I posted a video above. Sorry I couldn't edit it down to be shorter. I'm sure you'll get the picture after the first minute or so :) For those of you who have never heard my voice; Yes, I know I sound like a little girl :)

I also forgot to mention that in the past few days she has figured out how to take the socks off her hands as well. At first she could only take off her left mitten. But now tonight, she discovered she can take the right one off. We've already started the "Take it Off/ Put it On" battle. I usually win when she gives up after about 5 rounds.

Today we took Caydence to the Children's Hospital for her sedated echo and EKG. The sedation clinic is very nice! We got our own big room to stay in and it had all brand new "state of the art" equipment. Once we got settled in, Caydence would not be quiet! She kept yelling and yelling, listening to her voice echo throughout the room and down the hallway. I was almost embarrased... I never wanted to be one of those Moms with the screaming child who wouldn't shut up. But I guess it happens to everyone at some point or another. I'm sure this won't be the last time.

The doctor we saw was a ICU Pediatrician and he was very nice. The nurse said we would probably see him again when Caydence is in the PICU. He explained that the chloral hydrate they were gonna give her was just like getting slipped a Mickey Finn. It has been used for years and years. Caydence would basically get drunk and pass out.

It was soo funny when they slipped her the Mickey. Luckily they were able to put it down her tube since I guess it tastes really bad and after about 5 minutes or so, she started giggling, and smiling at Josh all funny like she was drunkard. Holding her, Josh could hardly maintain his composure. The look on her face was priceless. It was so funny, I wish I would have had my camera. After a couple more minutes, she happily passed out and fell asleep.

They had her on a heart and oxygen monitor thoughout. I hate those machines. It's so nerve wracking watching her numbers go up and down. Everytime they start to go down, you always have that moment of "What if they gonna keep going down????".

After she was sedated, the echo guy came in and performed a very detailed echocardiogram. He got all sorts of pictures at all kinds of angles. I think it was the most detailed one Caydence has ever had. But that is good, because we wanna make sure the doctors can see EVERYTHING prior to her surgery. She started to wake up at the very end, but by the time she was fully awake, it was all done. We still had the EKG to go, but that would only take a minute, so there was no sense in putting her out again.

After all the testing was complete, her cardiologist came down. He said that her left ventricle is a little smaller than the right, but it shouldn't be a problem at all because where they come together looks alright. I didn't completely understand everything he said, but what I did understand was that it looked good! He said he was going to go over the echo with her surgeon and do all sorts of fancy calculations and measuring. He said they could even use her echocardiogram and do practice surgery if they wanted.

That's all the news for today. Thanks for reading :)

Getting closer...

2009-12-01T22:30:00.005-06:00

Yes, so the big day is getting very close and my nerves are sky high! T minus 12 days and counting. Here is a pic of her above; pre-scar. Everyone keeps telling me to make sure to get lots of pre-scar pics.

Yesterday (Monday) Caydence had another chest x-ray and met with her Cardiologist again. She is still showing signs of heart failure, but it hasn't gotten much worse since we saw him two weeks ago. Her heart is still a little enlarged and she still has excess blood in her lungs.

Tomorrow (Wednesday) she has a sedated echo and EKG. She is always really squirmy when she gets her echo's done and the pictures were just a little grainy, so they want to sedate her to get better clearer views before the surgery. Which is definitely a good idea!

She can't have any milk after 8:30 am and then her appt is at noon. They said they will probably use chloral hydrate which I guess is common and she'll only be out for an hour. Just long enough to complete the procedure.

Then Thursday we meet with a Hematologist to make sure there isn't anything special they need to do for her surgery in regards to her clotting disorder.

We were supposed to see her Pediatrician next Wednesday for her 6 mos check-up and vaccines, but her Cardiologist said that during her surgery, the heart lung bypass machine would just wipe out the vaccines, so it would be better to just wait until after surgery (probably January) to get them. Same with her RSV shot she was supposed to get, but they will probably give her that one in the hospital soon after her surgery.

So next Friday is her Pre-Op day where we get a tour, meet with the anesthesiologist, do some last minutes tests/blood work etc. and make sure everything is ready for the big day.

We have already got our referral to stay at the Ronald McDonald house. So hopefully they have a room available. We're supposed to call the morning of her surgery. If they don't we can stay at some local hotels for $10 a night (Same as the Ronald McDonald House) until a room is available there.

They say that one parent can stay in the hospital, but Caydence will be in the PICU and they only have 5 sleeping rooms for PICU parents. Understandably priority goes to parents of the most critically ill children. But at the same time, we were told this is their "slow" time of year. Most children get major procedures done outside of RSV/Flu season, but Caydence can't wait that long.

Hopefully she'll be home for Christmas. That would be the best present in the entire world!

Surgery Date!!!!!!!!!!!!!

2009-11-16T23:56:00.003-06:00

Just a quick post to keep you all updated.

Caydence had her big Cardiology appointment this afternoon. She first had a chest x-ray. Next, an echocardiogram, because her Cardiologist and Surgeon wanted to see a few more angles of the heart.

Then we finally got to meet with the Surgeon. He thought it would be a good time to schedule her surgery. Caydence is showing some signs of heart failure. Nothing severe, but enough to warrant surgery. She is breathing harder, she has a little more blood in her lungs, and her heart is a bit enlarged. But the surgeon said this was good because if she wasn't showing, these things, then something could be wrong. Something to do with muscle build up... Josh knows the technical stuff more than me.

Anyway, her surgery is tentatively scheduled for the morning of Dec 14th. It will take roughly 4 hours and is typically a 10 day hospital stay, so hopefully she'll be home by Christmas!

The surgeon has done this specific surgery hundreds of times. In fact he just did one this morning on a three month old. They have all been successful. Of course, he had to tell us there was a 2 - 3% chance of complications and a very very small chance she won't make it. But I just try not to think about it.

Every surgery has it's risks and without this surgery, Caydence definitely wouldn't survive.

If you want to learn more about Caydence's specific heart defect, there is a great website that explains it very well. See http://www.pted.org/?id=atrioventricularcomplete1. If you scroll over the heart diagrams on page 1, it shows you how Caydence's heart looks now, and the what it's supposed to look like. Page 3 shows an animation on how they repair her heart.

To the Mom's out there reading who have gone through this already... Adrienne, Carrie, Andrea... Any advice?!?!?!

I know it's gonna be one of the hardest days of our lives, but I can't wait until it's all over and Caydence's heart is all mended <3

Please keep Caydence in your prayers. Especially on December 14th!

RSV and a Play Date

2009-11-15T19:51:00.012-06:00

November marks the beginning of the RSV season and Friday I took Caydence to get her first Synagis injection. It won't stop Caydence from contracting RSV, but it will make her symptoms much less severe if she does get it.

Many of you are probably wondering what RSV is. Don't worry, I hadn't heard of it before either. Here is a brief overview...

RSV stands for Respiratory Syncytial Virus and is one of the leading causes of lung infections in infants and small children. RSV is a very common respiratory infection.

The symptoms of RSV are similar to the common cold. Usually, children with RSV will have a mild fever for a few days, a runny nose for 1-2 weeks, and a cough which may last for several weeks.

This doesn't seem too concerning right? However, some children, especially infants less than one year old, or children with other medical problems (like Caydence) can develop a serious RSV infection. Children with a serious case of RSV may need to be admitted to the hospital for treatment.

By the age of three, almost all children will have had RSV. And once you have had it, you CAN get it again, although symptoms may not be as severe. An adult with RSV may just have common cold symptoms.

RSV is spread by coming into contact with an infected person and the droplets they produce when they cough or sneeze. Careful hand washing with soap and water is the best way to prevent the spread of RSV.

So, on the recommendation of her doctors, Caydence will get monthly Synagis injections throughout the winter months to prevent a severe case of RSV. The nurse we saw gave us a free little sign to hang on her car seat to remind people to wash their hands.

For more information on RSV visit the CDC's RSV Homepage

Josh and I both received the seasonal flu vaccine and H1N1 vaccine and once Caydence is old enough she can get them as well.

Tomorrow we are supposed to meet with Caydence's heart surgeon during her cardiology appointment to figure out when to have her surgerys. Hopefully the surgeon doesn't get called away and we are able to meet with him and get all our questions answered. I'm nervous, anxious, and excited all at once.

I can't wait until it's all over and Caydence is all better. Next June we are going to have the biggest 1st Birthday/Post OP Party ever! It will be a great day. I can't wait <3Yesterday, Caydence had her second playdate with her friend Olivia. My friend Melissa and I decided that we had better get together before the holidays while everyone is still healthy. So Melissa, her husband Jim, and daughter Olivia came over for a bit. Olivia is sooo much bigger next to Caydence. Here are some pics...

That's all for this post. Hopefully, next time I write, we'll have a date for her heart surgery! Stay Tuned...

5 months!

2009-11-10T17:13:00.013-06:00

5 months ago today Caydence was born! I can't believe it. The time has flown! She is getting so much bigger and her hair is getting so long.

Last week we met with the GI specialist. Caydence is now over the 10 lb mark. She weighed in at 10 lbs 5 oz! We voiced our concerns about Caydence NG tube and the specialist agreed that a G-Tube would be best for Caydence. So she was going to meet with Caydence's cardiologist to see if it would be better to do the G-tube surgery before or after her heart surgery.

When she was telling us about the G-tube surgery, I was tearing up a little. I felt kind of stupid cuz compared to her heart surgery, the g-tube really isn't a big deal. It is a very minor surgery, but they still have to put her under and make an incision and everything.

I keep worrying about her being scared or in pain and it just breaks my heart everytime I think about it. I love her sooo much. I would do anything if she didn't have to go through all this.

I called last week and found out that Caydence DOES have my blood clotting disorder :( So now on top of all the other doctor's we have, we now get to meet with a Hematologist. We'll have to determine if she'll need to be on blood thinners during her surgeries. That was kind if a blow. I mean, after everything, it would have been nice to find out she didn't have my clotting disorder. But at least we knew to test for it and we can take measures to protect her.

She's been sleeping a lot lately, I don't know if it's just cause her heart is working so hard and it makes her tired out or maybe she is going through a growth spurt. Or maybe she is just sleeping a lot because that's what babies do. Who knows...

Yesterday morning the GI specialist called me back and said she had spoke with the Cardiology staff and I guess we're going to meet with the cardiac surgeon next Monday during our appointment and decide when best to do both surgeries. Hopefully he doesn't get called away on an emergency or something because Josh and I really want to meet with him and get this all behind us.

This past Sunday Caydence was baptized. Josh and I hadn't been to church since before Caydence was born and it was nice to see all our friends there. Hopefully once Caydence is all healed up from her surgeries we can start going again on a normal basis. Here are some pics from her big day...

Everyone was excited to see Caydence, especially the children.

Caydence stared at the ceiling fans almost the whole time we were there. She loves ceiling fans. They're like big mobiles!

Here is Pastor Sylvia Baptizing Caydence

Here we are with Caydence's Godparents Kris, Louie, & Brent

October Updates

2009-10-27T22:17:00.016-05:00

Yes, I've been a blog slacker lately! I'm sorry :(

But I'm back now and that's the important thing. Since I wrote last, we've had doctor's appointments, therapy appointments, shots, blood draws, tube revelations, trick-or-treaters, new home health equipment delivered, and now we are in the midst of party planning!

On Oct 16th, Caydence saw her new pediatrician for the first time. Unfortunately, Caydence decided that the doctor's office was the perfect spot to take a massive poo! So massive, we ran out of wipes, but luckily, the nurse had more for us to use. Her new doctor seems very nice and knowledgable. Although it was just a routine check up. At the end of the appointment Caydence got her 4 month shots. She didn't like them very much. But I think she handled it better than last time.

On Oct 19th, Caydence had another echocardiogram and her first appointment with her new Cardiologist. The room where Caydence had her echo was really nice. The whole ceiling was covered in twinkling lights. Unfortunately, Caydence didn't notice because she was fussy. We had to hold her hands so she wouldn't swat at the technician while he was rubbing the transducer on her chest. But we made it through.

After the echo we met with her new Cardiologist. He noticed she was breathing a little harder. It was the first time Josh and I really noticed. She usually has her shirt on. But when she had it off in the examining room, you could see her chest really working. He wasn't too concerned with it. It's just something we need to keep an eye on and he increased the dosage on her lasiks a tad. He said her echo looked really good and the surgery shouldn't be a problem. Even though she has two holes in her heart, there is enough tissue in her septum to work with, which makes patching easier. He also said both sides were symmetrical, which is also good.

He thought we could do the surgery in December or January, and that we would meet with the surgeon sometime soon. My heart kind of skipped a beat when he said that. Her surgery always seemed like it was so far off in the future, and now it is getting so much closer. I'm scared. Very scared! I would just die if anything happened to her. The thought of them cutting her open makes me sick to my stomach. But I know she won't live if she doesn't have the surgery. She needs it.

So we're still waiting to find out when we're going to meet with the surgeon, but our next cardiology appointment is November 16th. After her appointment, Caydence had blood taken to test her for the clotting disorder that I have and also check her electrolyte levels. We're still waiting for the results. I think I'll call tomorrow.

Caydence's weekly Birth-to-3 appointments have been going fairly well. She is learning to track objects much better. But is not doing so well on tummy time. For awhile she was doing really good at lifting her head up while on her tummy, but now she will hardly do it at all. Josh got her a bumbo chair a couple weeks ago and she can hold her head up by herself for a couple minutes at a time.

Last week her OT and I made a huge tube revelation. I am surprised we hadn't figured it out sooner. As you know, Caydence isn't taking her bottle at all anymore. Anytime we would try she would just push it around in her mouth and kind of force it into the sides of her cheeks or she would gag and cough. The GI Specialist blamed it on reflux.

What me and the OT discovered is that anytime you put anything in Caydence's mouth; like on her tongue... she gags! The NG tube has caused her to develop a really bad gag reflex! I started doing some research online and found that a lot of other parents have had the exact same thing happen their babies. They said that once they switched from the NG tube to the G tube, it got a lot better and were able to work on the oral feedings more and eventually get rid of the tubes all together.

Maybe Caydence does have a little reflux, but all I know is that I could go over to her right now and stick a pacifier in her mouth and she would start gagging for about 3-5 minutes until she regained her composure.

I can't wait to meet with her GI specialist next week to see what she thinks about it. Obviously I don't want Caydence to have surgery to get a G tube inserted into her stomach, but I think it is the best thing for her right now. It would stop her gagging and we could start to work on her bottle feeding again.

My ears will blow smoke if they tell us to just give her more reflux medication. IT'S NOT REFLUX! IT'S THE FRIGGEN TUBE GOING DOWN HER THROAT! Luckily, Josh will be there, so I know he'll lay down the law with them. Right Josh?

Today a guy named Sam from Home Health came and brought a pump for Caydence's feeding tube. Since we brought her home from the NICU, we had been feeding her with crappy syringes that give me cramps in my hands. The pump is pretty nice. Sam showed me how to work it and so far it has made life A LOT easier. Before we would spend about 7 hours a day sitting in a chair pushing a syringe. Now, we can just hook up her pump and it feeds her for us. Hopefully now my hand can heal and it won't be stiff and sore everyday when I wake up :P

The only draw back is that now we have a big IV pole in our living room and seeing Caydence hooked up to it makes her look like she's sick or something. It is kind of sad :( But hopefully, she can get her G-tube soon and work on bottle feeding and get her heart fixed and leave all this trouble behind us. God willing!

This past Sunday, our city had Trick-or-Treating from 2 - 6pm. Don't ask me why, I think it's stupid. It's worse enough that we can't have trick or treat on Halloween, but we can't have it at night either :P I guess one Halloween many many moons ago, a girl was kidnapped and killed on Halloween or something where I live. I don't really know the story. But because of that, we have to have trick or treating early and during the day. Anyways, Caydence greeted the trick or treaters as they came around. Maybe next year she'll be big enough to go Trick or Treating! Here are some pics...

Oh, one more thing! Caydence is getting baptized in a few weeks! So right now we are in party planning mode. It's just a little party, but it is the first one we've ever had at our house since we bought it 3 1/2 years ago! And don't worry, I promise to post pics :)

Step UP for Down Syndrome Walk!

2009-10-11T22:06:00.024-05:00

Saturday morning was the Step UP for Down Syndrome Walk in Madison. We had a great time. It was very cold, but well worth it. At one point there was actually some flurries in the air. I couldn't believe it. We were kind of worried about taking Caydence with us, but she stays pretty warm and we had her bundled up good.

Our fundraising effort was a definite success. Our team "Caring 4 Caydence" raised a grand total of $2,429.00 for the Madison Area Down Syndrome Society!!!! Josh and I would like to thank everyone for their support. We are truly humbled by how many people were willing to donate.

Caydence's team included her Mommy, Daddy, Gram Gram, Grandma Jean, Grandpa Dale, Uncle Brent, Auntie Sara, Cousin Cassie, and friends Betty, Melissa, Olivia, Jim, Ceria, and Kyria.

Josh and I made our team sign. Josh carved out the letters and I painted it. It turned out really nice.

I also made team buttons for everyone. Here is a close-up...

There was a silent auction where Gram Gram won Caydence a personalized piggy bank, and Grandma Jean won a baby quilt. After the walk there was nummy hotdogs, chips, soda, and ice cream waiting for everyone.

Here are some pics from the event -

Caydence all bundled up all snug

Me and Betty

Melissa & Jim (their baby Olivia in the stroller)

Me holding Baby Olivia

Ciera & Cousin Cassie

Ciera's daughter Kyria

Betty and Gram Gram

Caydence and Daddy

Our team on the walk

Another one of Caydence and her Daddy

Me, Auntie Sara, Daddy, Grandma Jean, Uncle Brent, and Grandpa Dale

Caydence got to meet her friend Brianna, who also has Down Syndrome. They were both due on July 5th and were both in the NICU at the same time. We got to meet Brianna's parents Jillian and Cliff at the pre-Party on October 4th.

Here is Caydence with her button after we got home. She was all tuckered out from her big day!

Josh and I look forward to participating in the walk next year and every year after that. I think it's a great way to show Caydence how much we love and support her. And it also raises money for a great organization!!!!

Thanks again to all who made our fundraiser a success!

Swallow Study

2009-10-10T01:16:00.010-05:00

Last week we had our appointment for the swallow study. Josh wasn't able to take off work, but luckily, my Mom was available to come with me. She was a big help since I've never been to this hospital before and didn't know where I was going.

We couldn't really get Caydence to suck on the bottle at her appointment, but the few swallows she did do, went down alright. They put a lot of the barium down her ng tube and watched it go through her intestines. The good thing is, is that her insides seem to be working alright.

After her swallow study we met with the speech therapist and then the cardiac nurse again. They seem to think the reason that she is coughing/choking/not taking her bottle is because she has reflux. They think she has figured that after she takes her bottle, she feels yucky, so now she doesn't want it. They decided to put her on Raninidine which is supposed to help. Then they referred us to a GI specialist.

So this past Wednesday we went to the Children's Hospital and met with a GI specialist. I am proud to report that Caydence has broke the 9 lb mark. She is now 9 lbs 2.2 oz! We talked a lot about her feeding tube with the specialist. She also thinks Caydence may have reflux and since this Raninidine we got last week isn't helping, she gave us a prescription for a stronger medication - It's like generic Prilosec. Hopefully that will help.

By the end of the appointment, we agreed that we would try the Prilosec for the next month and then meet with the GI specialist again in 4 weeks. If there still isn't a change in her feeding then we will talk about getting Caydence a G tube, (This is a tube that goes directly into her stomach instead of down her nose then into her stomach).

I think the g-tube will be a better fit for Caydence since the ng tube is really bothering her lately. She wipes at it all day with her "mitten" and has been choking on it at least 3 times a day. I'm also thinking the ng tube is what may be causing her reflux since the stomach has to stay open a little to allow the ng tube in. There may be stomach acid seeping out up into her esophogus. That's just my opinion though...

The GI specialist also recommended that we get a pump for her feeding tube, so it doesn't take up so much time to feed her. And since we have to feed her every three hours, the pump can be programmed to run over night through multiple feedings while she is asleep. So maybe Josh and I will be able to get more sleep too! And the pump can be used for both an ng tube and g tube.

The order for the pump went in, so now we wait...

Tomorrow/today (It's late) is the Step UP for Down Syndrome Walk. Josh and I are very excited. We have raised sooo much money. I never imagined so many people would sponsor us! We really appreciate it a lot. I wanted to make a "Caring 4 Caydence" banner for the walk, but I don't know how to sew and wasn't sure how to go about it. So Josh and I made a wooden sign. Josh carved out the letters and I painted it. I haven't painted since college, so it was nice to be artsy again.

I'll post pics of the sign and the buttons I made in my next post which will be all about our walk. I'll be sure to take lotsa pics :)

Here's some pics of Caydence in her Panda outfit...

without hat...

Tonight Josh sat Caydence up on his lap and she was holding her head really good. So of course I had to take a pic! I love her little cowlick <3

That's all for now <3

Stay Tuned :)

Step UP for Down Syndrome TV Spot

2009-09-29T12:38:00.001-05:00

Andrea Wipperfurth, Executive Director of the Madison Area Down Syndrome Society (MADSS) did a TV spot on Channel 15 last night promoting MADSS and the Step UP for Down Syndrome Walk. Way to go Andrea!

Getting closer to a resolution...

2009-09-29T01:01:00.005-05:00

Last Thursday we had an appointment with a cardiac nurse practitioner at the Children's Hospital. As I said in the previous post, Caydence couldn't get in to see her new cardiologist until mid October, so they wanted her to come in and get checked out before then.

The nurse we met with was very nice and took her time with us and checking Caydence over. We voiced our concerns about her feeding tube and so she called up at speech therapist to the room to take a also take a look at her. The speech therapist could tell Caydence was kinda disorganized in her sucking. And after talking for a bit, the nurse and therapist decided to schedule a swallow study for her.

Caydence coughs a lot and gags when she's eating. So the swallow study will check to see that her food is going down the way it should be. Another thought is, that she is gagging and coughing because of her feeding tube.

So this Thursday, we will be going to the hospital for her swallow study and also to get some blood work done since they haven't checked her levels since she was in the NICU.

I am a little concerned though; when the speech therapist called me to set up the appointment Friday, she said that Caydence needs to take about 20 swallows which will equal out to be about an ounce or roughly 30 mLs. This may be a problem since with her tube in Caydence usually only takes about 5 to 10 mLs and in the past 3 to 4 days she hasn't been taking anything by bottle.

So I don't know if they are gonna want us to take her tube out or what. If anything at least, the doctor's will see what a terrible eater she is and enforce them to find a better solution than her NG tube.

Obviously, I don't want Caydence to have to have surgery and have a feeding tube put in her stomach, but she isn't eating with the NG tube in. And when it's out she is eating so so much better! So maybe if she does get the G-tube put in, it will allow her to work on bottling better and she won't have that nasty NG tube taped to her face and going down her throat. I'll let you know how it goes.

Here's a cute pic of Caydence and Daddy:

To tube or not to tube... that is the question

2009-09-22T20:58:00.008-05:00

Sunday night Josh and I made the executive decision to remove Caydence's NG tube. She's never really had the chance to get hungry since we're feeding her every 3 hours and since we've been having trouble with it, we wanted to see how she did without it. Maybe if she had the chance to get hungry, she would eat more and figure out that in order to satisfy her hunger she had to suck on the bottle.

Monday morning we went to see the specialist at the Waisman Center. Caydence weighed in at 8 lbs 4oz. She is in the 25th percentile for her weight and the 50th percentile for her height/length (this is according to the Down syndrome growth chart). Mr. Specialist thought that us experimenting without the feeding tube was a good thing. He was actually surprised that Caydence was still using the NG tube. By this point he said, her doctor should have determined whether or not Caydence still needed the NG tube or if she needed a G tube. He said NG tubes are usually only used for shorter periods of time since they are so uncomfortable for the patient.

The specialist suggested we keep the tube out for the day and see how she does. If she wasn't getting close to her target, which is 60 - 65 mLs per feeding, then we should put the tube back in. Caydence usually takes 5 - 10 mls by bottle and then the rest goes down her tube. When we got home from her appointment, she took 55mLs by bottle! It was the most ever!

Unfortunately, it didn't last. Although she ate more than she did with the tube in, it wasn't enough. After that 55 mL feeding, she averaged about 25 mLs. So Monday night, the tube went back in :( . It broke my heart to put it back in. She was so much happier without it.

Because I am having to quit my job, we are currently in the process of switching Caydence's doctors to another network since she will only be under Josh's insurance. We can't get in to see her new pediatrician and cardiologist until mid October, but the cardiologist wants her to come in and be seen by one of his nurses on Thursday to check her out.

We're going to talk to them about the possibility of a G tube. I've heard a lot of parents are really nervous about getting a G tube put in their child, but after it's over they wish they would have done it earlier. The surgery is minor and is very low risk. Right now I think it's our best option since the NG tube just isn't cutting it.

Other than the tube problems, Caydence is doing well. She had a chest x-ray last week and the doctor said it looked good. She started sucking on her pacifier more and is starting to turn towards sounds.

I've been trying to get a good picture of her smiling, but it seems they always turn out blurry...

Tube Concerns

2009-09-17T22:21:00.005-05:00

I am really getting discouraged with this whole tube feeding thing. You'd think after 3 months, I'd be used to it, but that is not the case. It just feels like she's never going to eat. I'm going to be tube feeding her until she's 30... Or at least until she can do it herself, I suppose. We always offer her the bottle before each feeding but 99% of the time, she won't take anything. The other 1% of the time, she'll take like 5 - 10 mLs.

Right now my main concern is with her pulling out her tube. We always have to keep her hands in mittens or socks unless we're really watching her closely. The tube has been bothering her more lately. In the past, she's pulled it out a little, but I was always able to maneuver it back in. But this past weekend, she was in her swing with some thin mittens on and she pulled it out completely and it seems now whenever she has her mittens off, she puts her finger up under her tube and tries to get it out.

I can't watch her every single second, so she wears socks on her hands. The drawback to this, is that I feel it is inhibiting her development (grasping, learning to use her hands, developing her sense of touch, etc.) I'm at a loss... It takes 2 people to change her tube out, so I don't know what I'd do if she took it out when I was alone with her. And it's not like we have an endless supply of them. They aren't cheap.

I'm just glad we are seeing a geneticist/pediatrician on Monday at the Weisman Center. He is supposed to specialize in children with disabilities. Hopefully he can help. Meanwhile, if there is anyone out there who is reading this, who has had similiar issues, please let me know.

Here is a pic of Caydence after pulling out her tube this past Sunday night. She was quite content and proud of herself!

The next picture is of Caydence, after we put the tube back in... Not so happy...

On a brighter note, our team "Caring 4 Caydence" has all together raised $1,395.00 for the Madison Area Down Syndrome Society's Step UP for Down Syndrome Walk next month. And we still have until October 10th! I'd like to thank all the people who have donated so far! There are SO many of you! It really means a lot to us, so THANK YOU!

Step UP for Down Syndrome Walk!

2009-09-06T01:10:00.006-05:00

Next month on October 10th, we will be participating in the Step UP for Down Syndrome Walk hosted by the Madison Area Down Syndrome Society (MADSS). It is basically the same as the Buddy Walk, which I'm sure is more familiar to you, but by MADSS forgoing the use of the "Buddy Walk" logo, it allows them to keep 100% of the proceeds local.

This year, the walk will be held on Willow Island at the Alliant Energy Center in Madison. Registration Opens at 9:30am and the Walk begins at 11:00am. There will also be a silent auction, bounce house, arts & crafts, music, food and more!

In support of Caydence and to raise awareness about Down Syndrome we are asking all of our friends and family to join us in this fundraising effort!

Please see our fundraising page at: http://www.firstgiving.com/caydence

To join the "Caring 4 Caydence" team on the day of the walk. You can click on the "Join this team" link on her fundraising page and you will be prompted to register.

You can also support us by sponsoring the Caring 4 Caydence Team. To make a donation, click on the "Sponsor me now" button on her fundraising page.

We are thinking of making "Caring 4 Caydence" buttons for our team and maybe a banner too! Please let me know if have any other fun ideas!

To learn more about the Madison Area Down Syndrome Society you can view their website at: www.madss.org

Caydee's 1st Therapy visit

2009-08-30T01:03:00.013-05:00

This past Wednesday afternoon was Caydence's first therapy visit with her Birth to Three OT (Occupational Therapist) Suzy. She showed me so many things that Josh and I can do with Caydence to help her development. Suzy worked with her for about 45 minutes.

She started with some hand and foot play; clapping Caydee's hands and feet together and getting her to touch/grab at her toes. She showed us how sitting her in the boppy brings her shoulders forward and can help bring her hands together and hold on to toys. To help with her visual tracking she suggested bright/ high contrast toys, shiny reflective toys, or toys that light up. Since Caydence didn't have a lot of toys yet, I found some shiny cat toys we had and some reflective ribbon.

She put Caydence on the boppy on her tummy and showed us how to best position her. She showed us how we can tap on her chest to make her lift her head. She also suggested placing a toy or something interesting to look at in front of her to also motivate her to lift her head and help with her neck muscles.

We've always been told that babies with Down syndrome have such low muscle tone. But I haven't really been around a lot of babies, so I couldn't really tell how Caydence was. Then when Melissa brought her baby Olivia over the other day, I finally understood what they were talking about. Olivia is so much sturdier and stronger than Caydence. Caydence is so floppy.

Since Caydence is starting to develop an aversion to things being in her mouth, Suzy showed us how we can massage her cheeks and tap around her lips to stimulate the muscles. She also suggested trying to put things like teethers and other toys in her mouth so she gets used to it more.

The next day Josh and I went to Babies R Us and Target and bought some toys for Caydence. The therapist suggested getting some links that Caydence could easily hold on to and put in her mouth, so we got a package of those. And we got an Eric Carle lion mirror toy, a Baby Einstein cow teether/vibrator toy, some Infantino tag along chimes, and some teether keys.

Later that night when we got home, Caydence got to try out her new toys. I gave her one of the links. It was her first time grabbing anything with both hands! Here's a pic!

I remembered that our friends Angie and Bob let us have one of their kids play gyms so I set that up and hooked all her toys on it.

I hung the tag along chimes by her feet so every time she kicked her feet they would make noise.

Over the past couple days I've noticed that she has started playing with the toys and hitting them, realizing she can make them move. Then I looked over and she had grabbed one of the links! I was so proud of her!

Way to go Caydence! <3

Caydee's 1st Play Date

2009-08-29T00:57:00.008-05:00

Wednesday morning Caydence had her first playdate. My friend Melissa came over with her baby Olivia who was born last month. They didn't do much, but it was cute to see them together. Here's some pics...

Showing off their big bulky biceps...

Pretending to fly...

Cuddling...

Olivia cries, while Caydence takes a nap...

2 Month Check-Up

2009-08-28T21:53:00.001-05:00

So much has happened during the past week and I have been a total slacker on blogging! So, in order to not overwhelm you with one long post. I'm going to try and break it up into little ones. How's that sound?

Last Friday was Caydence's 2 month check-up with her pediatrician. Our little stinker weighed in at 7 lbs, 8 oz. She is getting so big! She has gained 3 lbs now since she was born. Unfortunately for little Caydee she also had to get her 2 month vaccines at this appointment :(. She had a little medicine she had to take and then got 3 shots. One in her right leg and two in her left. :( Poor sweetheart.

She was vaccinated for Hepatitis B, Polio, Pneumococcal Disease, Diphtheria, Tetanus, Pertussis, Rotavirus, and Hib. Obviously, since Josh and I have never had a baby before we didn't know that babies can get fevers from vaccines. After the nurse gave Caydence her shots she told us that usually parents will give their baby Tylenol right before their appointment. (They could have told us that earlier...). But anyways, they gave us some free infant grape flavored Tylenol which we took home.

Over the weekend she went to her first cornboil as well as a wedding shower and was able to meet my Mom's extended family. She met 3rd cousins, 4th cousins, 5th cousins, great great aunts and uncles, and even some Great Great Great Aunts! She was pretty sleepy for the most part and ended up getting a fever later in the day from her vaccines the day before. But we fought it off with the Tylenol (which she didn't like). I thought she would like the Tylenol. It smelled like grape candy, but then I tasted it... Not so good! She is all better now though. :)

You'll noticed I've added some more links on the right side of the page to some more wonderful blogs that I came across. Enjoy!

Birth to 3

2009-08-20T00:17:00.001-05:00

Tuesday afternoon a couple ladies from Birth to 3 came over. We went over Caydence's RIDES evaluation (Rockford Infant Developmental Evaluation Scales) from August 12th and then made goals for her to work on in the coming months.

The Rockford Infant Developmental Evaluation Scale is an overview of skills in the areas of Personal-Social/Self-Help (How the child interacts with others and responds in different situations), Fine Motor/Adaptive (How she uses her vision and hands for reaching and grasping), Receptive Language (What she understands), Expressive Language (What sounds she makes), and Gross Motor skills (Large muscle movements).

Personal-Social/Self-Help: Caydence completed 2 out of 4 skills at the birth to 1 month level with emerging skills up to the 3 month level.
Fine Motor/Adaptive: Caydence completed 1 out of 3 skills at the birth to 1 month level and 1 out of 6 skills at the 1 - 3 month level.
Receptive Language: Caydence completed 2 out of 3 skills at the birth to 1 month level with emerging skills up to a 3 month level.
Expressive Language: Caydence had emerging skills from up to a 1 month level.
Gross Motor: Caydence completed 2 out of 8 skills at the birth to 1 month level.

Obviously the therapists will work on all sorts of stuff with Caydence, but a couple specific goals we set for her for the next 6 months are:

For Caydence to be able to follow a moving object with her eyes and head and turn toward sounds.
For Caydence to get stronger on her feedings so that she can take more by bottle.
For Caydence to be able to push up on her arms while on her tummy

We are going to start weekly therapy visits next week. They will be able to show us things we can do with her to help with her developmental delays. I can't wait to get started!

Here is a pic of Caydence doing some tummy time on her boppy:

Caydence prefers to lay on the right side of her head so she's getting a flat spot. Her doctor said to put stimulating things on her left side so she will lay on that side more. I had read somewhere that although babies can't see very well, they can see contrasting colors very well. So I found some black and white stuffed animals and put them on her left. They seemed to interest her...

Caydence goes to the Cardiologist

2009-08-13T23:08:00.001-05:00

Below is a rare photo of Caydee without her tube. You can actually see her whole face without any distractions!!! We have to change it out every Friday and we took this pic between tubes last week :)

This afternoon Caydence had her first appointment with her cardiologist since leaving the NICU last month. They started with an electrocardiogram which is basically an ultrasound on your heart.

Caydence did NOT like that. It isn't painful or anything. The technician just uses a little baby transducer with jelly on it and rubs it lightly around on her chest to get images of her heart at different angles. They can also look at the blood flow within the heart to see how much un-oxygenated/oxygenated blood is mixing where her holes are, as well as listen to the blood flow within the heart.

Initially we just laid Caydence on the examining table, cuz she looked kinda tired, so we figured she'd just lay there. The tech turned on some nice lullaby music and dimmed the lights. But after a bit, she started to get fussy and squirrel around so the tech had to stop cuz he couldn't get good pictures with her moving all over. So then Josh had to hold her while the tech kept doing his thing. She still was kind of squirrely, but we muddled through.

After the Electrocardiogram, we went into an examining room and the nurse took her oxygen saturation and blood pressure. Initially her oxygen was in the mid 80's, but the oxygen reader must have been in a bad spot cuz when the nurse moved it she was able to get a reading of 95. Which is good, cuz they like for it to be between 95 and 100. I think her blood pressure was good, but the nurse didn't comment on it.

Next Caydence got weighed and measured. When she was born she was 17 inches long and 4 lbs 7 oz. Today, she was 20.75 inches long and she weighed in at 7 lbs 3 oz! She had gained 8 oz since she met with her pediatrician a week and a half ago. Once the nurse was done taking all her vitals, we got to meet with her cardiologist. He thought that, although she is gaining weight, she could be gaining a little more. So over the next four weeks we need to slowly increased each feeding from 48 mls to 59 mls.

He had just looked over her electrocardiogram and thought things were looking good, (except for her holes). He is still thinking that she will not have her surgery until she is 6 months to a year old. He wants her to get as big as possible before having her surgery.

For now her medications are helping her heart along. The only reason to do her surgery earlier is if she stops gaining weight, or starts showing signs of heart failure. He said that since she is taking her medications, she most likely won't show any signs and then they'll just schedule for sometime next spring.

The only downside is that since she's not going to have her surgery for awhile, I'll probably be out of work and so then Caydence will only be under Josh's insurance, which doesn't cover her current doctors. So now we'll have to switch to a different hospital and different pediatricians & cardiologists. :(

In the event that we DO have to switch doctors, our current doctor gave us the names of cardiologists who he knows and recommends in Josh's network and he reassured us that they would be quite capable of taking good care of her. So that made us feel a little better. We'll have to see how everything pans out.

Meanwhile, Caydence is doing well, and that's what is most important! <3

What a crappy night, seriously!!

2009-08-11T02:27:00.000-05:00

Daddy here:

I don't have too much to report yet, as her doctor's appointment is on Thursday and her next birth to 3 class is on Wednesday but I thought you might get a kick out of what happened tonight.

When I got back home tonight Jenny was getting Caydence ready for her feeding. She had given Caydence her medicine already and was in the process of changing her diaper so I thought I would help out. Well, Caydence started to poo which typically isn't a big deal but tonight apparently wasn't just any ordinary night. Caydence kept pooing and pooing for awhile and we had to change her diaper a couple of times, which again, isn't all that unusual. But then, just when I thought it was safe to clean her up for the last time it happened....what happened you ask? PROJECTILE POO!!! Seriously, I thought she had to be running on empty at that point so I wasn't paying attention and she let it fly. After all was said and done, Jenny was a casualty of war, poor thing. She was a direct hit and all she could do was laugh at the whole thing while my jaw dropped. I guess what they say is true, when it's your child there isn't much that you won't be able to clean up or deal with.

Anyway, Caydence was cleaned up and things continued as usual for the rest of the night. I just thought you might get a kick out of our little excitement for the day. We'll make sure to post after her doctor's appointment so you all know how she's doing. Anyway, I guess I'll talk to you all later.

Take care from Caydence's Daddy

8 Weeks Old

2009-08-05T03:26:00.002-05:00

I can't believe Caydence is 8 weeks old today. Time sure does fly. There hasn't been much to write about as of late. Next week will be her big week. Wednesday will be her first visit with the occupational therapist from Birth to Three and Thursday we meet with her cardiologist and she'll have another echocardiogram. Hopefully he can give us a better idea as to when her surgery will be.

Right now Caydence has her days and nights mixed up. She usually wakes up around 6 or 7 pm and is awake all night. Right now it's 4am and she's still wide awake. Hopefully we can get her switched around some how. I feel bad because when friends and family visit, she's always sleeping. They never get to see her big beautiful eyes.

A couple months ago I came across an article written by Melissa Riggio; a girl who has down syndrome. It is a beautiful article and very inspirational. Please click here to read it.

Unfortunately, tonight I came across another article about her and found out that Melissa passed away last year at the age of 20 from leukemia. She was the daughter of Barnes & Noble CEO, Steve Riggio. This article outlines how Steve was inspired by his daughter to create special section of books about children with special needs. He realized after his daughter’s birth that books about children with disabilities were scarce and often difficult to locate. Today, Barnes & Noble offers more than 3,400 items in the company’s “Children with Special Needs” collection.

God bless Melissa!

Doctor's appointment goes well

2009-07-29T03:37:00.001-05:00

Daddy here:

Well, Caydence had her second doctor's appointment today and all went well. She was weighed at the doctor and over the last 2 weeks she has gained 9 oz. which is exactly where she needs to be according to the doctor, so we're happy. I was expecting more but I guess when you do the math, that kind of gain would be equal to me gaining roughly 25 pounds in two weeks so actually I'm impressed. Otherwise, all went well and we had a few more questions answered, specifically about her feeding schedule. We asked about spreading it out more and we were able to rearrange her night time feedings so that there will be a 4 hour window in the early morning hours. All I have to say is wow, what will I do with all of that extra time? Maybe I could write a novel or something. The doctor said we have to make small changes and that she would alter the schedule again in a couple of weeks because we don't want to shock her with the changes. I guess you could say that we're taking, baby steps? Yeah, I know, that was bad but it's 3:30 in the morning, you can't expect a lot.

The other news to report is that we had our first visit with the "Birth to 3" group yesterday. "Birth to 3" is a program that is designed to aid children with disabilities in catching up to the rest of their age group by the time school were to start. It's an awesome program and the research shows that children in "Birth to 3" are leaps and bounds ahead of children with disabilities that don't enter the program so we're excited about this too. The group comes in 2-3 times to evaluate where they feel Caydence is and then they make a plan as to where they feel she is and what needs she may have. They provide Physical Therapists, Speech Therapists, Occupational Therapists and other help as Caydence may need it. I'm so glad that this program exists and that we can provide it to Caydence. Otherwise we would be learning it all from scratch and why should we reinvent the wheel if it already exists.

Anyway, we're all doing well and have had a few very important days as of late. I guess I'm going to leave it at that. Take care and I'm sure we'll be posting again soon.

Josh

6 Weeks Already?!?!?

2009-07-24T21:24:00.001-05:00

A couple days ago Caydence turned 6 weeks old! Jeez, time sure does fly :) I'm sure she is getting bigger every day, it's just hard to tell since I am always with her. This coming Monday a lady from the Birth to Three program is coming to our house for Caydence's initial evaluation. We'll have to let you know how it goes.

Tuesday she has another check-up with her Pediatrician. We can't wait to see how much weight she's gained. We still don't know when she is going to have her heart surgery. Last time we saw her Cardiologist he was still saying 6 months to a year. We see him again in mid August. Hopefully then he will be able to give us a better estimate.

Right now her doctor's are recommending she not go to daycare until after her surgery. It would put her at a higher risk to get sick and getting sick before her surgery would not be a good thing! Her daycare is also not comfortable with her feeding tube, so right now I am trying to work something out with my job. Either working from home somehow or taking a leave of absence.

If I end of having to quit my job, besides the lack of money...Caydence would most likely need to change all her doctors because she would be under Josh's insurance and they don't cover her current doctors. We really like her doctor's so it would be a shame to switch. But we'll have to see how everything pans out. Wish us luck. it's a sticky situation :P

Here are some pics!

Sitting in her boppy -

Sleeping in her Pack N' Play Bassinet. (No, that isn't her foot... we putting socks on her hands so she doesn't pull out her feeding tube) Hehe! -

Admiring the mobile on her lamby swing -

Lastly I would like to say congratulations to my friend Melissa. She gave birth to her baby girl Olivia today! :) She was 8 lbs and 19 inches long! Hopefully we can get a pic of Olivia and Caydence together in the near future :)

Caydee's Schedule

2009-07-20T21:52:00.001-05:00

1:30 a.m. Feeding Time

1:30 a.m. Sodium .25mL

4:30 a.m. Feeding Time

6:00 a.m. Captopril .4mL

7:30 a.m. Check heart rate

7:30 a.m. Digoxin .2mL

7:30 a.m. Lasix .62 mL

7:40 a.m. Feeding Time

10:30 a.m. Vitamins 1mL

10:30 a.m. Feeding Time

1:40 p.m. Captopril .4mL

1:50 p.m. Feeding Time

1:50 p.m. Sodium .25mL

4:30 p.m. Feeding Time

7:30 p.m. Check heart rate

7:30 p.m. Digoxin .2mL

7:30 p.m. Lasix .62 mL

7:40 p.m. Feeding Time

10:00 p.m. Captopril .4mL

10:30 p.m. Feeding Time

The First Week

2009-07-18T12:36:00.001-05:00

Well, it's now been a week since we took her home from the NICU and here are some things we've learned...

* Babies are very loud sleepers.

* Babies can cry very severely when they have gas.

* Being pooped on, peed on, and spit up on kinda of sucks.

* Babies go through multiple outfits a day due to these bodily fluids.

* Sleeping is a sacred luxury that many people take for granted.

* Babies are very slippery when wet.

* You should always make sure you have enough wipes close by when you are about to change a diaper, ya never know how many you'll need.

* When giving babies medication, insert the syringe as far back into their cheek as possible or else they will spit it out.

* Babies can be very fussy eaters.

* Tummy time can be very rewarding.

Josh and I under estimated the amount of sleep deprivation that happens when caring for a new baby, but we are trying our best to adjust. Overall, I think our first weeks went great and we are very happy she is home with us!

Here are some pictures...

What night is this now?

2009-07-15T02:33:00.001-05:00

Daddy here:

I'm sitting here, 2:30am on Wednesday morning trying to stay awake so I figured I would post a little update. Sorry about the missing update yesterday but neither one of us were up to typing anything lastnight, being sleep deprived and all. I wasn't aware of how much sleep we would lose in this transition but now I see that we better get used to it. It's kind of funny when a big deal now is sleeping 5 hours strait, crazy.

Anyway, Caydence is doing well and gaining weight like mad. She had her first doctor's appointment yesterday and between Saturday afternoon and Monday morning she gained 4 ounces. Other then that, it's been pretty standard around here, feeding, meds, and little sleep. The only other event of interest was the fact that we gave Caydence her first bath this evening. She seemed to do alright during that but it's a work in progress because it didn't go nearly as smoothly as the baths in the hospital.

Otherwise, not much else to report. Hopefully we have a little more energy and can post some pictures today. Until then, take care and wish us luck.

Night 2 in Progress...

2009-07-13T00:22:00.001-05:00

Hey Everybody! Thanks for all your support and encouragement.

Jenny here... It is about 12:30 am. I got an hour or two of sleep yesterday afternoon. Josh was running on fumes from his two hours last night, so I sent him to bed at 8:30, but I don't know how much longer I can stay awake. Right now Caydence is sleeping away in her lamby swing. She seems to prefer it more than her cradle.

She has her first appointment with her pediatrician at 10:30 am today. We'll have to let you know how it goes. We are both very happy Caydence is at home now. But I think we under estimated the whole not sleeping thing...

I'm sure it will get better when we don't have to feed her every 3 hours. Hopefully I'll get more sleep tonight that last night :) We'll see...

What a night!!!

2009-07-12T11:52:00.000-05:00

Daddy here:

Well, we made it through the first night and everyone is still alive, or in mommy and daddy's case, at least in varing degrees of alive. I don't think either one of us slept more then 2 hours the whole night. Between the feedings spaced 3 hours apart, or the meds that she has to have scattered throughout the day, or the diapers that were absolutely the worst that I've seen so far(I personally think she held onto the worst of it so she could break us in on the first night, I can't confirm that but it's my opinion) we could sleep. And if by some chance we did find the bed, she was so loud with her breathing and noises that we were constantly thinking she was in trouble and came running.

Just out of curiousity, how long can a person go without sleep? If you don't know, I'm sure that I'll have the oppertunity to find out.

But all that aside, we're still so glad that she's home. The daily trips to the hospital were brutual. After all the time that was taken out of the day, with commuting and various other things you maybe saw her half of the time you invested. This way is much better, just a little more tiring then I expected. We also have to give her a bath sometime soon but we'll see if that happens today.

Anyway, I thought I would quickly give some updates of how it's going and now I have to go and change a diaper or something. Take care and I'll make sure to keep you all in the loop.

WOW!! Today is the day!

2009-07-11T09:26:00.000-05:00

So, it's daddy here and neither one of us can believe that today has finally shown up. It's been a month since Caydence was born and she hasn't stepped one foot inside of our house but that's all going to change in a matter of hours.

I'm a little late to make yesterday's post but I'll give you an update as to what happened anyway, that way mommy can't get mad about me not posting like I said I would. :) Well, yesterday they continued to get us ready to take her home today, covering her medications, how to administer them, and various other things while I was at work. But they made sure to save the worst for last, just so I would be there. The nurses wanted to see daddy put the feeding tube in again, just to make sure I was comfortable with it. (Ok, seriously, if anyone ever gets comfortable with this something is wrong with you.) But daddy did it, and I got it in on the first time, which is good I guess. But I still get torn apart on the inside watching her cry and squirm when we do this and nothing that anyone says will make it any easier. But we both know it has to be done so we're ready to do what is needed. And that pretty much takes care of yesterday, one traumatic experience and a lot of preparing for today.

We've been running around the last couple of nights, making arrangements, cleaning house, washing her clothes, putting together furniture and other various tasks that we felt were needed before Caydence shows up here. We can't have her thinking the home that we live in is worse off then the hospital that she's being discharged from. Anyway, I'm sure that one of us will post tonight to give everyone an update as to how it's going so until then, take care and wish us good luck.

The Date is Set!

2009-07-09T21:33:00.000-05:00

Caydence will finally be coming Saturday!!!!! YAY!!!!

I brought her carseat in today and tonight they are going to put her in it for an hour to make sure she's tolerates the position and everything.

Tomorrow I gotta bring a cooler so I can take home the 3 bins of frozen milk they got in the freezer. Josh is going to get more practice putting in a feeding tube and we gotta watch a video on infant CPR.

Josh and I are working hard to get the house ready for her; washing lotsa of baby clothes, boiling nipples and pacifiers, and all sorts of stuff.

Happy 4 Week Birthday!

2009-07-08T21:29:00.001-05:00

Caydence is 4 weeks old today!!! Yippee!!! And today the nurses told us that Caydence should be able to come home in a few days (still no exact date). They increased her Digoxin last night and they wanna watch her for a couple days to make sure she is still stable on her meds, but after that she should be able to come home.

They also told us they want us to feel comfortable putting in her feeding tube before they send her home. I had put it in twice before and Josh had done it once. So today I did it again and this time I did it without the nurses help! I am actually very proud of myself for doing it so well. I think I am fairly comfortable with it now; and she didn't cry this time either, but you could tell she was uncomfortable.

Tomorrow they want us to bring in her car seat so they can do a car seat trial with her. I guess what they do is put her in the car seat for an hour while she is hooked up to the monitors and make sure the seat position doesn't affect her heart rate or oxygen intake. If it does, then they need to send her home in a car bed in which she can lay down while in transport.

Now Josh and I are frantically running around trying to get the house ready for her. We can't wait til she's home!

Happy Girl

2009-07-07T19:55:00.001-05:00

Caydence is now up to 5 lbs 9.9 oz! Last night she took 2 whole bottles. She must be a night owl because she only takes about 1/2 her bottles during the day. Her nurses the past couple days seem to think she is strong enough to come home. But it's up to the doctor on when they release her. Our nurse today said they only give parents about 24 hours notice before sending babies home. So it could be any day now!

SCARY!!!!!

Of course Josh and I can't wait for her to come home. We are just so nervous! She is so small and because of her heart defect we have to closely monitor her respiratory rate, heart rate, and temperature. We just don't want anything bad to happen to her

It will be such a relief once her surgery is over and her heart is all fixed up. They are still saying 6 months to a year. Right now she sleeps all the time because she just doesn't have enough energy. We can't wait for our sleeping beauty to wake up :)

She likes to smile in her sleep, so here is a pic of her grinning sound asleep after her 4:30 pm feeding today.

What a dirty little girl!!

2009-07-06T21:15:00.000-05:00

Caydence really knows how to make the day interesting for her mommy and me. The day started out normal enough; getting her temperature, checking her weight and attempting to feed her. Caydence put on another ounce today so that means she has officially gained a little more then a pound since being born which is very good. But she still needs the majority of her food to be passed down her feeding tube which is unfortunate but I guess that's what it's there for. But this isn't where the day got interesting, it was when we tried to give her a bath.

While getting her ready for her bath, we had to take her diaper off and what a package of surprises she had for us. And then she felt it necessary to add to those surprises after we had her diaper off.(Ok, if you haven't figured out what the "surprises" are yet, there are only two things that you will find in a dirty diaper, think about it!!) Ok, so she finally finishes and we start bathing her in the baby tub that the nurses had brought in which had a nice pad in it so she wouldn't slide around and we didn't have to worry about her going under the water. Well, after we were a minute or so into the bath Caydence felt required to "surprise" the tub. To say the least we couldn't continue with her bath as it was no longer going to clean her, so we had to finish with a sponge bath.

But all in all, we had a lot of fun with our daughter and we learned more today about taking care of her when she comes home. We hope that she gets to come soon so we can enjoy having our daughter in our own home but we don't want her to come home before she's ready.

Our Little Firecracker

2009-07-05T00:14:00.001-05:00

When we got to the hospital today, the nurse told us that she took her whole bottle at her 10:30 feeding! She hasn't done that since the first couple days after she was born. So that is very exciting news. Especially since they increased her to 42 ml per feeding.

A little while ago our friends Kris and Louie bought Caydence a little 4th of July t-shirt and socks, so I took it to the hospital today to have her try them on.

I'm sure the socks will fit her better next year, but they looked so cute on her!

Check out all that hair! It's really growing in the back and it is so so soft!

That's all for today :)

July 3rd Update

2009-07-03T20:11:00.001-05:00

I have found that Josh is so much better at blogging than I am. He has a way about writing that is far superior to my own.

Anyways, Caydence had her first bath from Mommy today. Unfortunately, I don't have any pictures of this event. But I think she really liked the warm water. She never fusses or anything during her baths she just seems to enjoy herself. My friend Nichole was up visiting, so she held Caydence in the tub, while I washed her up.

She was really wide awake the whole time and took 25 ml during her 1:30 feeding. Then she was out like a light. At 4:30 she was a little more tired and only took about 15 ml. Her weight is up even more today - 5 lbs 6.6 oz. So that is good!

Her nurse said they might up her Captopril a little more to help her along. Here is a picture of her sleeping after her 4:30 feeding. I really need to get more pictures of her with her eyes open! But she's so sleepy all the time :)

Daddy's heart is hurting after today

2009-07-02T20:33:00.001-05:00

First of all, Caydence is doing well today. She gained more weight today and she ate 17 ml for Jenny at her first feeding. And when I arrived at her second feeding she was awake with two of the most beautiful eyes that I've ever seen. I can't explain how those eyes just make me melt. But it's here that the day took a bad turn for me. The nurse made daddy put the feeding tube in this afternoon.

That was one of the most difficult things I've ever had to do. The look on her face while I tried to get that tube to go into her nose just ripped me apart on the inside. For her to go from this bright eyed little baby to crying and tears was tough. But I did get it in and I know that she needs this feeding tube to survive, not that this makes it any easier to see my daughter cry.

But when the tube was all said and done, I was able to feed and hold Caydence which is nice and she slept away the time with me. She's so cute while she sleeps; to be quite honest I think she's cute pretty much all the time,(although, I may have a small biased opinion on the subject). Anyway, she's doing well, even after my eventful start to the feeding. Thanks for reading and stay tuned for the next update.

Josh

July 1st Update

2009-07-02T00:38:00.000-05:00

Happy 3 Week Birthday to Caydence!

She was doing really good today. She took 21 ml for me at 1:30 and 25 ml for Josh at 4:30. The nurse told me that Caydee poo'd on the night nurse when she was changing her last night. Silly Girl!

Nothing much to report on today, just plugging along.

June 30th Update

2009-06-30T20:42:00.001-05:00

Caydence was doing very well today. Her nurse thought she had a lot more spunk than usual. I think her new medication is really making a difference. She seems to be able to take more of her bottle before falling asleep.

At her 4:30 she was wide awake and got a bath from her Daddy. I think she liked it. She didn't fuss at all. Here is a picture of her after her bath making a funny face for the camera.

Her weight is now 5 lbs 3.4 oz and she's grown an inch since she was born.

I'd like to say a special hello to Carrie from Life As We Know It and Cheri from Raising Reid Thank you for your kind words :)

June 29th Update

2009-06-29T19:48:00.001-05:00

Caydence started her digoxin last night. I think it is really helping already. She chugged down 20 ml of her milk at her 1:30 feeding (she takes about 38 per feeding). Usually she'd only take about 10 ml and then we'd have to give her the rest in her tube.

Speaking of her tube... Today they wanted us to get more experience putting her tube in. I had done it once before. I was hoping Josh would be there this time, but he had to work late. So I did it... OMG it didn't go as well as last time! This time she was awake and fully aware of what I was doing!

She was screaming and crying her eyes out! I felt so bad :( She hardly ever cries. I got it in eventually, but it wasn't easy! I wanted to cry myself :( Hopefully next time Josh will be able to learn how to do it. I don't want to be the only one that knows how to change it.

The nurses made new name signs for all the babies cribs for the 4th of July. Ain't it cute? They let us keep the old one. I'm gonna frame it and put it in her room here at home.

The cardiologist visited her this morning and seemed to think she looked alright. Nothing much else to report today.

Sunday update from Daddy!!!!

2009-06-28T19:41:00.002-05:00

Well, today I made Jenny stay home to rest up and I was the one to go and take care of Caydence at the hospital. This was the first time I got Caydence all to myself so I was excited and scared to death at the same time. But all in all, the day went pretty smooth. Caydence gained half an ounce which is fine, any weight gain is good these days, and they're going to start her third medication tonight.

But the worst thing was having to change her all by myself along with having to pick her up all by myself. Up to this point, someone has always placed Caydence in my arms, but the nurses made me pick her up and put her down by myself and I did it!! I was scared and shaking but Caydence didn't break so I guess I did ok. The nurses seemed to have fun at my discomfort and they all said that they would make sure mommy knows how I did so I could do this kind of stuff more often. Funny group of people we have there! Otherwise, the day went off without a hitch so I'm happy. Thanks for reading.

June 27th Update

2009-06-27T21:49:00.000-05:00

Nothing much new today. Her heart is really making her tuckered out so she had to have most of her feedings today through her tube. They might start her on a third medication tomorrow - Digoxin. Her hair is really growing a lot. It's kind of a light brown.

Josh convinced me that I need a day off from visiting the hospital. I'm on the verge of exhaustion, so tomorrow I am staying home and sleeping in between pumping every 2-3 hours. It's gonna be hard to stay home, but I know I need the rest and Josh will be there with her. I told him he needs to take lots of pictures for me :)

Introducing Caydence Bristol!

2009-06-26T19:45:00.001-05:00

Our beautiful daughter Caydence was born just a couple weeks ago on June 10th, 2009. She weighed in at 4 lbs 8.7 oz and was 17 inches long. She wasn't due until July 5th, but decided that she wanted to make her debut a little early.

Back in February, during my 20 week ultrasound we found out that our baby girl has a heart defect - AVSD (Atrioventricular Septal Defect) or AV Canal. Meaning, she has a hole between the upper two chambers of her heart and another between the lower two chambers of her heart. She will require open heart surgery to repair the holes when she is 6 months to a year old. A really good website which explains her defect is: www.pted.org

We also found out that this heart defect is very common in babies with Down Syndrome. Our doctor asked us if we wanted to have an amnio to see whether or not she had it. Josh and I decided that the diagnosis didn't matter to us and that we would love and take care of her either way. So we declined it and decided to wait until she was born to find out.

When she was born the neonatologist told us that she suspected that Caydence had Down Syndrome based on some physical features and a few days later, a test confirmed it. Now most people would think Josh and I would be upset or disappointed at hearing this news. But the truth is, is that it didn't phase us in the least.

As most of you know, our 1st baby Katlyn, was stillborn last February due to a underlying blood clotting disorder that I didn't know I had. Losing a child really puts things in perspective. Although we wish Caydence was 100% healthy, we are just soo incredibly happy that we have a chance to be parents to her and that her heart is able to be repaired.

Right now she is still in the nicu. Here are some milestones over the past couple weeks.

June 12 - She got her IV out and was held by her Mommy and Daddy for the first time.

June 13 - Got her feeding tube out and went off oxygen

June 14 - Had her first tub bath

June 15 - Started taking Lasiks (Dieretic)

June 19 - Started taking Enalapril (Blood Pressure Med)

June 20 - Feeding tube was put back in. Her heart is making her get tired out more easily so she isn't able to finish her bottles.

June 21 - Peed on Mommy and Daddy during a diaper change :)

June 24 - Moved out of her incubator into a crib and is maintaining her body temperature

June 25 - Reached 5 lbs and her umbilical nubby fell off

June 26 - Her blood pressure medication was changed from Enalapril to Captopril which can be adjusted easier.

Right now there is no word on when she will be coming home. But her cardiologist thinks it will probably be closer to her due date. Right now they want to get her stabalized on her medications.

We will be posting daily to keep everyone up to date on how she's doing.