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 :)


millie said...

Caydee looks so happy. Thanks for the update.

Kathy said...

I just can't help but smile when I see her smiling!

Anonymous said...

I don't think you classify as a slacker. You are busy ALL the time! Love the pics and I hope things keep getting better and better. Keep us posted on that surgery. She will make it through with flying colors.

callie said...

Your baby is so beautiful. Everything will turn out great for her. I work with many Downs Syndrome children who have gone through many surgeries and everything turns out good. I agree with you about Halloween! It should be on Halloween night, not a week before and certainly not in the afternoon!!!! Political correctness gone amuck.

Grinder said...

Why is josh wearing a Stripper outfit? 2nd job?