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!

Quick Update

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

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

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

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

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

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

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!!

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

New Discoveries and Caydence gets slipped a Mickey Finn

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...

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!!!!!!!!!!!!!

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

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 <3 Yesterday, 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!

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

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!

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!