Tuesday, December 29, 2009

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!

Monday, December 21, 2009

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 :)

Friday, December 18, 2009

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

Thursday, December 17, 2009

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.

Wednesday, December 16, 2009

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

Tuesday, December 15, 2009

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.

Monday, December 14, 2009

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...

Friday, December 11, 2009

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.

Thursday, December 3, 2009

Wednesday, December 2, 2009

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 :)

Tuesday, December 1, 2009

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!