Less than 48 hours to go!

It is soo crazy to think that just a couple months ago I was a frightful mess (oh wait! I still am! Silly me)... but back to the reality of it all.
We are in for one of the biggest adventures of our lives, as our little princess will undergo a 7 hour surgery in less than 48 hours. We are trying to enjoy the last bit of time that we have with her being "mobile", but she sure wants to sleep alot (I wonder why???)

Liam is excited because it's halloween and his dad is coming home from work to "pick him up" and go "treating". Funny because I'm not sure he really understands what it means - guess we'll find out what he thinks.

Now onto another tough subject and added prayers to your already long list. My nephew was taken to the hospital for swelling of the brain. He is ICU and in a tough spot, so...... that being said, we REALLY need all the prayer you can hand out. His mom & dad are having a tough time (not suprised) & we want him to be ok.
Thanks again for all your support!

5 DAYS LEFT!!!

Can you believe that we can count on one hand how many days are left until our little girl has her heart repaired???
I can't! It seems like just a little bit ago & we were finding out that we were being blessed with another little angel & then the news that there was a problem with her heart & then all the infections & surgeries & on, on, on.......
WELL>>>>>>>>>
The day is soon here!
Wednesday oh Wednesday - how far away yet so close you are.


Due to this, we are basically shutting our house down. We won't be letting anyone visit with Aine, We won't be handing candy out for halloween or visiting with those that we normally do (sorry if you are on our visit list :( But, I'm sure you understand & will enjoy the pictures.

Please send all the prayers, good wishes, and hugs that you can. We will all need them!!!

Thanks!

Lots of hugs & kisses the Caseys

Go Baby Go! Update #2

She is O.U.T. OUT of the cath lab!!!
They are holding pressure on the spots that the cath was put in and will then be sending her to recovery.
There is some narrowing of the pulmonaries, but it is right where they will be doing some of the work, so it should be a pretty straight forward fix.
The pressures where "good" ~ so she is ready for the 2nd on their end of things!

Sooo exciting - Happy Dance - Go Baby Go!

Update #1

They just placed the cathetors (she's a really hard poke) & the Dr is now working on placing the cath into her heart to take measurements and pictures. He will then make sure that there isn't anything else that needs to be done & will get out of there & get her into recovery.
She is Doing GREAT!~!

Way to go Baby Girl!!!

Keep It up!

(I'll keep posting updates as I get them)
My next update should be in about 45 minutes

Heart Cath here we come!

Aine has officially gone back for her Heart Cath.
They will be looking to see how her heart looks, what the oxygen saturation is, and make sure there aren't any pesky veins that need to be removed.
This will also help the surgeon make sure what he has planned matches.

Here's wishing you the best baby girl! You will rock it!

Getting Closer

We are getting closer and closer to the BIG day!
To prepare for the upcoming Biggon - Aine will under go some other tests.
One will give the surgeron a road map of her heart which will help to make sure he doesn't need to change anything up. This will also verify that there aren't any infections in her heart that have been missed with the other tests, or any other "Aine" surprises.
Based on the findings and recovery from the above test, she will also see her cardiologist (who - thank God has been there with us in one way or another every step of the way!).
She will then need to go through a pre-op physical, blood tests, and probably some other things that I'm not aware of as of this time.
At the time of the physical we will also talk to her surgeon. I'm guessing to talk about what will be done, amount of time needed, his expectations after surgery, etc, etc, etc.
In case your wondering; yes.... we're all hanging in there, somehow, some way, we are all hanging in there - just waiting....... for the biggon to be completed & see our Beautiful Perfect Princess open her eyes & smile at us!
Thanks for all your prayers & thoughts.

Finally!!! Some Pictures for you to enjoy!

The header says it all :)
Sorry about the wait - ENJOY!

The date is set!

The next two weeks will be crazy weeks.
We have a lot of things to be blessed about, and one big day coming up.
First off my previous daycare boy turned 3 years old! I can't believe it & neither can his mom. Liam doesn't care about the age, he just cares about what kind of cake is going to be there :)-
Second; Liam is doing GREAT! He loves swimming, doesn't want anything to do with tumbling, Loves his sister (he even shared his "stinky" with her!!!!), Loves life & will do anything to get a smile -- my little comedian ;)-
Third; Aine is growing like a weed, my little chunky monkey.
Fourth; Two pup is healing - slowly, but surely & that's what really matters

Now for the scary/crazy part......
Aine is scheduled for surgery on Nov 2nd! We will definately be looking for everyones prayers and thoughts on that day.
As of right now, they are hoping to do the full repair but I don't know what the final plan is going to be until that day.

I wish I could say that I'm not 100% pre-occupied with the thought of the surgery, but I can't because I am. Everything right now is being done in preparation for that day. Whether it be getting a list of food ready so that meals will be prepared ahead of time, making calls now to tie up any loose ends, getting papers ready in hopes of getting things entered into the computer during her surgery (absolute LOL on that one, but I'll try), staying inside so that we don't get exposed to any extra germs, and the list goes on & on & on.....
The funny thing is, right now I'm not stressed out - just overwhelmed with preparation. It's almost as if I'm getting ready for a trip, but sending my family in all different directions, not something I can say I really enjoy doing.

PRAYERS!!!

Since the birth of our little girl Aine; our page has turned from being just about our family to being a page about our family, friends, and people that we are meeting along our adventures in Casey Land.

I found out that a friend from high school's mom is battling A.L.L. Leukemia. She has won the breast cancer battle already and we would all LOVE to see her win this battle also. Sooo.... that being said, any prayers you can send her way would be greatly appreciated.

Thank you for all your support, prayers, and encouragement through all the good and bad times!

It's Almost TIME!!!

We got out of the hospital on Wed afternoon with some pretty exciting/nerve racking news.
Aine is ready - Yes...... READY for her surgery! All of the love, food, time, and hours upon hours of being awake with her have paid off and we should be able to get her into the hospital for her surgery BEFORE the mass amounts of Flu & Cold bugs start flying around :) YEAH!
At this time she is:
Running at about 73% oxygen saturation (down from 80%)
Weighing about 5.52 kg (up from 5.3 kg) they were guessing her shunt would take her to 6 kg.
Is sleeping most of the day & night away (she was up 1-2 hours, sleeping for 2-3, repeat until about 8-9 pm when she was down for most of the night)
Is getting tired VERY rapidly (we were doing about 1/2 hour of PT/OT, now we're doing about 15 minutes while she's awake)

We don't know when the actual day is, but it is right around the corner. I will let you know when we know more.


EXTRA Prayers are being sent out to little Finigan, Gracie, and Abby. Keep going strong girly girls!!!!

Hopefully we will get some news

Well,
We had a pretty eventful night last night. Aine's oxygen level consistently went down below her "good level" and we were concerned there would be a need for oxygen.
I talked to many staff & got little sleep but we all got through it.
Today is a little better, but she is still dropping so they have ordered an echo to be done (to check her shunt & heart) and they are looking at doing a CT scan, but that is not a sure thing yet.
I don't believe the cultures have come back yet, but nothing has really even had 24 hours to grow - so..... sit and wait, but at least we will continue moving forward and not just sit and wait for the results then go.
I'll keep posting as I have info.

Prayers to Abby!! Another Beautiful "broken" hearted kiddo. (TOF - Looking at a Possible Transplant)

Back in the saddle again!

Ok,so not really, but Back in the Hospital Again doesn't sound as good.
We wentto the Dr's today for a post-hospital visit and Aine registered with a 104.3 temp :( So no good.
We were sent to the ED and were from there admitted.
Man - can this little girl get a break???
They are thinking some kind of virus, but they are not too sure. I will continue to update as I find things out.

Out, Out, Out!

We are getting out!!!!
The good news of today is we are getting out & able to watcher Aine at home for any further signs or symptoms.
The Bad news is, they don't know what they are looking at & may never know. We are still waiting for the test results to come back which should be on Monday or Tuesday. Then we'll wait for the culture to come back. That takes about 7 days, so next week should be some more answers.
Liam is doing well, so that is a good thing. I guess he has some shadowing left, but eating like a horse so that is a good thing.
We have to start Aine on a monthly shot to protect her from getting a serious upper respiratory infection and has requested that any visitation to the house be limited & only to those that have not been around any ill people. Despite the fact that she has a low immune system, he feels it is a good immune system so... YEAH!!! That is excellent news on our part. That being said, he feels she has a good chance immune wise to fight things off - but... doesn't want her heart to be stressed out & doesn't want her chances of going into a planned surgery (full repair) to be comprimised.
Hope this answers some more questions that may be going through your minds, but if you have questions, please don't hesitate to ask. I read the comments and will answer - but it will probably just be in the next post.
Happy Weekend Everyone!!!

Just a little shout out to:
Our nephew Nick - he ran a 640 mile!!!!
Our nephew Justin - He's pounding it out on the football field!!
Great Job Guys!! Keep it up, we're proud of you!

Wait, Wait, Wait

Yup,
Aine is being Aine. Those funny little red bumps that she had when we came in yesterday can't decide if they want to be raised bumps or if they want to flatten out then come back as raised bumps with friends. Bummer!
The ED sent out a sample of the site that looked to be fluid filled to find out if it is the virus or not. We won't find out until Monday what the result of that test is, so we shall sit and wait.
The red mark that was on her back has now turned to a pinkish color and her skin continues to go from modeled to not modeled. Really weird. It's also strange that when I hold her for a while or after I get her up from sleeping for a while her skin is almost tanned looking (purple lookign if we are in the dark).
ID wants to see what she looks like in the am after another couple doses of antiviral meds.

Liam had a sweat out today and is almost clear of his spots/rash. ID mentioned this could have been caused by the vaccine, but what caused Aine to get this funky stuff??
My sister reported that you can still see faint spots on his chest & that he has a mark on his face that looks like the poster from school :( She isn't sure if it's new or not, but I don't remember anything on his face when he left, so second round? Yuck!

I on the other hand thought that I was just itching because of all the talk of the pox, but found that I now have 2 red spots on my chest & abdomen :( I reported it to the nurse who in turn reported it to the resident on staff because my spots look like the spot that showed up on Aine's back.

I haven't talked to Shawn to see if he has any mysterious spots or rashes, so I guess that will be my next step to adding more pieces to the puzzle.

On a positive note, Liam had a good time looking at school buses today & Aine is up to 5.3 KG!!!! Only 0.7 kg left tog et to 13#! At that time we will discuss the next fork in the road.

Until I have more information, I hope your weekend is filled with many memories & smiles!

Hello my old friend

Well, call my family strange!

Liam, Aine, and I had a little family adventure to the doctors office last week to get some shots. Let me tell you, it's no fun watching one of your children cry after shots, but man it's even harder when you have to console both. I don't think I'll opt for that one again (if I can help it).

Liam got the flu and chicken pox shot so that we would lessen the chances of bringing it in to the house to Aine. Well..... Yup..... We got it :( da da da....

Nope, no joke. Wed, Liam came up with the famous rash that we all know as the chicken pox. Luckily Auntie Cindy was able to come down and pick him up in the hopes that Ms. Aine would be clear of the pox, well..... you guessed it, we are back in "her" room. The poor nurses want to all come in and squeeze her, but as you guessed it we are on lock down :(

I will know more tomorrow about what is going on and what they feel we are looking at. The spots on Aine are acting really weird. She had a normal chicken pox mark on her neck, but the rest of the spots on her face keep coming and going. Everytime that they "go away" they bring friends back with them & when those friends disappear they bring more back with them! I'm afraid she's going to end up being one big spot!

Man O' man, would I love to wake up and find out all of this is just a
J... O... K.. E...

JOKE!

Well, Until I find out more information - that is all for now.