Saturday, April 30, 2011

New Day - New Hospital

Aine has now officially moved across the river.
We are in her new room which is really cool & really big. We are very lucky because now all the rooms are private & we got an "adopted" room, so we get to use some pretty cool stuff (web cam, Wii system, extra TV, and the list goes on). Liam can go to the playroom & the children's library (which was stocked by many caring people who donated books and money to fill it up - so if you are one that donated - THANK YOU!!!!)
She made the transfer across the river in true Aine style - she slept the whole way like a little princess & waited until we were at the top of the elevator to up-chuck everything in her system.
We are still looking at 2 additional surgeries, but they are unsure as to when they will be due to a positive blood culture.
They are hoping to do a lung scan the end of next week, which will tell them how her lungs are functioning & taking in oxygen.
We will say that it is amazing to think that she will be 1 month old on Monday!
But won't be leaving the hospital for at least 2 more weeks, but a better guestamate would be an additional month of hospitalization :(

Tuesday, April 26, 2011

Better than nothing :)

As of this time, Aine's cultures are coming back negative.
Her urine showed increased white blood cells - so, they are thinking she has a UTI or bladder infection. Way better than an infection in her blood or lungs :)

We are not planning on her having surgery until next week because they want to wait until they are at the new hospital to do anything. The PICU is moving across the river & is going to be right by Labor & Delivery and the NICU which will be nice because moms won't have to rush to get out of the hospital.

Liam is recovering from his birthday, but doesn't think he got enough cake. That is still the talk of the day & the "food" that he constantly asks for. Guess it's going to be a long year for him :)-

Monday, April 25, 2011

Another day of waiting

We are still awaiting some uplifting news.
We were informed that Aine started throwing fevers last night so they started doing cultures on every body fluid that they can easily retreive. She has an infection so they have post-poned her heart surgery until next week (after they move to the new PICU across the river).
She may still have her PIC line placed this week because they want to get her back onto food as soon as they can (she is down to 5.2 pounds as of this am).

I wish I had better news to share with everyone, We're hoping that will be coming soon.

Sunday, April 24, 2011

Our Baby Girl

Well... Where to begin???

I guess a small clarification on a previous post is a good place.
I didn't do a very good job of explaining the muscle part of her heart. Since the aorta is overwhelming the heart (which is a muscle) the ventricle must work harder which in turn causes the heart to work harder. You wouldn't think that this would cause a problem, but as the wall get bigger (thicker) the chamber which holds blood gets smaller which in turn makes the heart work harder to pump the volume of blood that the body & lungs need.

The next place to go is another update.
Aine has been looking better every day, but has shown (via her monitors) that the opposite is actually true. She was placed back on oxygen this weekend & developed some arrythmias & has continued to vomit. So due to this they stopped her feedings again (putting her on IV nutrients), and took more X-rays, EKGS, and a lung pressure test on her.

It was found that the shunt that was placed is working, but not to the extent that it should be, so our baby girl is scheduled to go into surgery on Monday to find out what is making to the shunt smaller than it should be. It will be pretty close to the same surgery that she had the first time, but hopefully not as intrusive & hopefully she will be out of the ICU quicker than the first surgery because she is stronger this time.

On a good note, Aine has a beautiful smile, beautiful little eyes, and a strong cry & grip.
We feel very blessed to have her join our family & can't wait to be able to take her home & squeeze her. (I will post pictures of her in a little bit)

Thank you for the good thoughts & prayers!

Saturday, April 23, 2011

Liam is TWO!!!!

Is all I can say about these last two years!
As many of you know (and some don't) Shawn & I waited a LONG time for our family to begin & boy have we had a Great time since we have been blessed with our little boy. Trying to enjoy every single minute that we have been given.
We had a Great turn out for Liam's birthday, which was wonderful because there is nothing better than spending a day with family and friends.
Liam was soo excited when he saw his Thomas cake, he asked about it for 2 weeks before his birthday (even though I don't remember telling him that he was going to get one).
He was happy to see everyone, but did spend most of his time in our arms & was more than ready to go to sleep after the festivities.
We would like to thank everyone for celebrating this joyful time with us & are so blessed that you are a part of our lives.
I will post pictures in the next few days so you can enjoy them!

Tuesday, April 19, 2011

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

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.

Monday, April 18, 2011

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

Sunday, April 17, 2011

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.

Thursday, April 14, 2011

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, April 9, 2011


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!!!

Friday, April 8, 2011

I'm Home!!

Baby Aine was transported from the NICU to the PICU on Tuesday night. This was done because she was scheduled to possibly have surgery on Wed AM and they wanted to have everything ready for her along with all the staff members available and ready to go. We were very happy that we were blessed with the opportunity to have the camera in our room to watch her 24/7 during this time. The good news is that during the night (Tuesday) Aine remained stable and they were able to post-pone the needed surgery as this gave me more time to heal and work on getting an early release. (They don't like to release C-section births prior to 3 days & since Aine was born at 6:30pm, they started my count on Tuesday am). I had a conference with the doctors on Wed that Aine's surgery was going to either occur on Wed PM or Thurs AM. At 5:00pm Wed, they decided the surgery would take place at 7:00 am on Thurs Morning. It was a 4 hour procedure that went really well and which she is recovering from very well. So that being said, yesterday was a happy and sad day as I was released from the hospital, but our darling daughter Aine must remain where she is so she can get better. The surgery she had is on her brave little heart. They connected the pulmonary and aorta so that oxygen can get to where it needs to go.

Waiting to get to hold Aine for the first time (prior to transport to the PICU)

Daddy & Liam having some fun time in the nice weather today
Getting ready to go see AineSitting nicely while Daddy talks to AineDaddy & Aine (One day post-surgery)Baby Aine one day post-surgery The "Drug Tree"

Wednesday, April 6, 2011

Heart of a Lion

Some may know & some may not know that our Little Princess has Arrived! She was born on Monday April 4th at 6:30 pm. She arrived weighing a whopping 6#'s 1 oz & 18.9 inches long. She has the start of rubberband arms, so that is very good news. We have named our Little Princess Aine EllaRuth Casey. (pronounced: On-ya Ella-Ruth) She was immediately taken by the NICU staff to start her observations and make sure that everything is going the way we expect. As the title says, she has the Heart of a Lion - but as the pictures will show she needs the help of the doctors to make it that way. We will be posting more information as time goes on but at the current time it may be spotty due to the busy schedule that we are running into since we are all in different locations. We are asking everyone to be patient with us and would love as many prayers for our baby girl as possible.
Daddy Getting ready to meet his DaughterMommy Meeting Baby Aine for the first time Liam loved riding in the wheelchair
Hospital Mac & Cheese - what kid wouldn't love that??
Flowers from my daycare baby & family :)

Baby Aine all settled in bed.

This is my view from my room - I may not get to hold her, but I get to look at her beautiful face 24/7 & talk to her nurses, doctors, and support staff when ever I want to.

Gotta Love Modern Technology.