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