Updates Galore!

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!!

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!