Our little peanut is home!!

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 :)

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

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

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

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!

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

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!