What is Really Going on with Aine's Heart????

Ok,
I am getting many great questions from everyone as far as what is really going on with Aine's Heart, how did we find out, what is going to be the final outcome, etc.

I will do my best to explain things, but please feel free to ask further questions & I will do what I can to answer them.

While we were pregnant with Aine, we were told she had a cystic hygroma (summed up: a sack of fluid under the skin. It can be deadly to a fetus if it doesn't go away, but lucky for us hers has shrunk to Almost nothing). After we found out about the cystic hygroma we were sent to a specialty clinic to have further testing done, which is where we found out that she was going to be born with a heart condition (which is what caused the hygroma in the first place - so I guess you can say we were lucky that it formed). Upon further testing we were informed that Aine has a heart condition call TOF (short for Tetrology of Fallot).

TOF is a four part problem with the heart. First; she has a hole in her heart which will need to be surgically repaired when she is between 4-6 months old. Second; she has Pulmonary Stenosis (her pulmonary is too small so blood could not circulate the way that it should). This is the repair that they did when she was 4 days old. They will check the status of the repair when they do her second surgery & determine if there is anything futher that they need to do. Third; her artery is overpowering both sides of her heart, so they will fix that at the same time they fix the hole in her heart. Fourth; due to the artery being positioned incorrectly, the muscle in her heart can become too thick/muscular causing problems later on in life.

I hope this helps answer some questions that you may have regarding Aine's condition.
We are hoping that it will not have too much of an impact on her life as she gets older, but only time will tell.

As I mentioned earlier, if you have questions, please feel free to ask & we will do our best to answer them.

The Caseys.

More Good News

I just got off the phone with one of Aine's Dr's and found out that they are very pleased with her progress. They will be pulling two more of her lines today (leaving only 1 as a "just in case" line). Not only that, they are talking about moving her to another section today or tomorrow which means that she is closer to coming home!!!! Everything has been very dependant on what Aine wants and when she comes home will depend on her also. She needs to be able to keep her oxygen level stable & "eat" via her mouth. Once she can do this, she will be home with us. We would like to send a Thanks to everyone for support, good wishes, and prayers during this transition in our lives. I will continue updating the blog as I get information & as our Little Prince & Princess grow.

Pictures as promised

Aine with just a gastro tube in :)

Such a Pretty Little Girl!Daddy holding Aine for the First time!!Aine with Nothing in & less fluid than before.

I don't think she knew what to think. Happy Anniversary!! 7 years Liam is really good at eating rice with ChopSticks It was his utensil of choice Such a big boy!Quadra and her new hunting buddy

2 Weeks

Have we had a lot happen in the last 2 weeks! Sometimes time doesn't seem to go fast enough & others it seems to fly by - with the weather being mostly junky. Lets hope that Sat is a beautiful day! Little Miss Aine is doing better every day. She is had some bumps in the road, but recovers from them very well. She is not on her ventilator any longer (she is wearing a nasal oxygen piece, but they are doing this hoping that it will help her body & brain slowly figure out how to regulate her oxygen saturation). She is no longer on Blood Pressure meds & is receiving milk :) She has lost most of the excess fluids so she looks a lot more like her ultrasound pictures - just smaller. She is finally tipping the scales at 5 #'s 7 oz & we are all hoping that she continues to go up from there (she dropped down to the low 4#'s). I will post pictures in the morning - Liam is headed off to bed, so I'm taking advantage of it & getting some sleep. We'll continue to update you as to her progress & would like to thank everyone for their prayers & good thoughts! They mean the world to us.

April 14th

The Casey house is stirring! We can't believe that Liam is going to be 2 years old in 9 days! He is such a sweet heart and taking everything with stride that we can't wait to let our hair down, party the day away, and watch his "little" eyes light up when he realizes everyone has come to see HIM!! Oh yeah & we can't forget the fact that he will finally get what he has been asking for this entire week. Cake - Thomas - Cake - Thomas - CAKE MOMMA!!!! I'm excited to see what it is going to look like :) Not only that, we received good news at about 2:00 this morning. Aine is doing well, she has had her blood pressure medicine reduced, pain meds reduced, ventilator reduced, and they have started to feed her breastmilk via a nasal tube. one of the doctors said that she is finally turning the corner. We are very happy to hear that & can't wait until she no longer needs the tube.

Aine's new blanket (it matches Liam's "Stinky")

We just need to figure out a name for it - Suggestions being taken

(Preferably nothing that is similar to "Stinky" or "Boggie")Howdy! You say my hat is on sideways? I say... It's Perfect!

Saturday

Well, It has been yet another long day. Liam is handling all of this as well as can be expected. He received a couple new Thomas trains, so he was very happy about being at the PICU today. We had a few visitors today (Grandma Casey, Auntie Cindy, Uncle Rick, Nick, & Justin). It was nice to see everyone and I know Aine enjoyed the company. It was also a nice surprise for Liam because it wasn't all about his sister today. On a good note, they removed her from the nitrous oxide last night and lowered her blood pressure medicine today. She is remaining stable, so they are hoping to continue to wean her off of a little bit more of a med tomorrow. The largest hope is that she will not be connected to anything by mid to end of next week. We're still looking at somewhere between 2-4 weeks of being in the hospital, but we will make it through and as strange as it may sound to some will probably cry the first time we her cry. We can't believe that Liam will be 2 in two weeks! Let the celebrations begin!!!