Tuesday, October 27, 2009

October Updates

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 :)

Sunday, October 11, 2009

Step UP for Down Syndrome Walk!

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!

Saturday, October 10, 2009

Swallow Study

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 :)