Saturday, April 28, 2012


Thanks to all that have helped "create" this post because as of lately people have been coming forward with some Wonderful questions & comments. All of which help us answer your questions and keep them coming. They also help explain what is happening in the Casey household along with WHY they are happening.

Some of the questions and comments that have been on my mind lately are:
Aine is now referred to as the "Mystery Baby". No one has seen her, just heard about her & seen her pictures :)
Why can't she really go anywhere when she can go to the Dr's office?
When will she eat by mouth?
Why can't she eat by mouth?
Why can't she play with other kids?
Why are you soooo worried about whether or not kids have had their vaccines & when they have had them?
Your gaurded
That POOR baby!

Well - as I said, these are some of the questions & comments that have been on my mind lately and I have been thinking long and hard about how to answer at least some of them. To be honest, the only way I have thought of is to re-start at the beginning. Some of this information will be a repeat, some you may not know. You will see that we Have been gaurded about our daughter, Not because we felt that you would not understand, but because we don't want her treated any different than you or me. She's already had a rough start to life & we only want it to get better, but sadly that is even an unknown.

The beginning:
Shawn & I were very happy to find out that we were pregnant with our second baby. I don't think Liam fully understood that the baby would be staying but he was still excited (remember I did daycare - so the kids went home :)
We didn't know exactly how far along we were so we scheduled our first Dr's appointment and they did an ultrasound right away for us to find out that we were 10 weeks along.

Now.... For a "normal" pregnancy, this would be the coolest thing EVER!!! An ultrasound 2 Yes TWO weeks earlier than most!! But in our case, this was only the beginning of the hardest pregnancy we could ever imagine for we were told that Aine had a cystic hygroma. Which means that she had a fluid filled sac attached to her body. It is part of the subcutanious section of your body, so they can't just remove it. Since Aine's was soo large they immediately referred us to MFM for further testing with no gaurantee of fetal survival.

Once at MFM, we were informed that they would continue to monitor our little one, but that the cystic hygroma was more than likely caused by a heart defect and that due to my age they wanted to run tests to verify that it wasn't caused by a genetic problem. Of course we agreed and went through the CVS test to get some further answers. The first batch of tests which were run at 12 weeks gestation came back negative, and informed us that we were having a girl! Now... Once again.... in a "normal" pregnancy, this would be the Coolest thing EVER!!! Finding out at 12 weeks that you were having a girl! But honestly the happy news was short lived as now we had to discuss whether we wanted to find out what could have caused the unknown heart condition or if we were going to possibly wait until birth to find out. We opted to wait to see what heart condition she would be born with and then pursue the common causes because this could and would alter the way they treated her after she was born.

At 16 weeks, they were able to determine that Aine would be born with her heart condition of Tetrology of Fallot. A four part problem that can vary from mild to severe. They would not be able to tell us how affected her heart was until later. We were sent for a fetal echo for verification which came back as a positive for Tetrology of Fallot (TOF). We were sent back to MFM for a consulatation.

During the consultation, we were asked if they could un-freeze my cells to do further testing, to which we said Yes. They were looking for specific things with the main thing being DeGeorge Syndrome or also known as 22q.11.2 deletion. This is a common chromosonal deletion that causes TOF. She came back showing that she was "positive" for DeGeorge Syndrome. So.... what does this mean????

1)The DeGeorge Syndrome caused her heart to develop differently (TOF).
2)The TOF caused her to develop a Cystic Hygroma (which ended up saving her life)
3)The TOF caused her to not process my amniotic fluid correctly which ended up causing her premature delivery.
4)The premature delivery caused certain things to be emphasized at birth and others to be more difficult to deal with at birth.

So... what does this "new" information mean and why are we sharing it now?

Mostly because it is very difficult to be "gaurded" and explain why, what, when, how and all the other questions that come up (or maybe don't come up).

Now that we have "summed" up some further information about our precious little girl, on to answering some questions/comments that have been on my mind.

The truth of the "Mystery Baby"
Aine has been kept out of the lime light for many reasons all of which go back to her heart condition and chromosonal deletion.

She spent 3 months in the hospital & when you finally leave it's pretty scary to invite anyone into your lives to see your new bundle of joy.

There are still many things that are a mystery to us, so we just go day by day.

DeGeorge AKA: 22q.11.2 Deletion
The DeGeorge Syndrome has caused things to occur in Aine that a "typical" Child would not have to deal with. There are many different things that can happen with 22q kids, but they don't neccessarily have to happen. Each baby is different - no doubt about that. There are things that we will not know until she is older and there are things that we have already found out. One thing that we know for certain - 22q.11.2 deletion or DeGeorge Syndrome is just a Name - it's NOT Aine. It has helped create who she is and who she will become, but it does not change who you know her as..... The beautiful little girl who loves to smile, hold toys, blow bubbles, and stare lovingly at her big brother and daddy. Ready to learn and try new things.

Aine has been at least temperally tagged as immunocompromised. What does this mean? Per the "Incapable of developing a normal immune response, usually as a result of disease, malnutrition, or immunosuppressive therapy". Which in Aine's case it means that if she comes in contact with a child or adult that is sick, she will more than likely get this illness. So???? you may say, this is a normal thing for any child - it builds their immune system! In a "typical" child, Yes - but in a child like Aine - NO... since she doesn't respond the way you and I do - She WON'T build immunity because she catches a cold, flu, "bug, etc; she will more than likely end up in the hospital with a lung infection or worse.
This brings me to the next thing. Vaccines..... To a parent who has a child that can end up in the hospital in a blink of the eye, knowing who your child is in contact with is VERY important.

Here are a couple examples:
A) You as an adult have a funny cough - you feel ok, no fever, no headache, just this silly little cough.
You come and see Aine....
Cough on her.....
We find out that "little cough" is actually Whooping Cough!
How do we find this little detail out? Because Aine is in the hospital with Whooping Cough.

B) You do the right thing and get your child vaccines. Which include some live vaccine (MMR, FLU Mist, Chicken Pox, etc)
It has been 4 days since they got them (they will shed the LIVE virus for up to Seven days)
You all come and see Aine...
They touch, goo, gaa, etc over her
She starts getting sick & we bring her into the ER room to find out what's going on.
We find out she has measles :(

C) You opt out of vaccines for your kiddo
Unknown to you, your child came in contact with another child that was carrying Measles
They can pickup the disease & harbor it.
You come and see Aine...
They touch, goo, gaa, etc over her
She starts getting sick & we bring her into the ER room to find out what's going on.
We find out she has measles :(

This coming to light - these are a few of the reasons she is not in contact with a lot of people. We have pending tests which should be back soon to let us know how her immune system is coming (she gets some yucky shots to protect her until she is safe to start getting the ones that other kids her age get).

Why the Oxygen?
It takes about 6-8 weeks for the lungs to fully heal after an infection. When you get an infection, you are more suseptible to getting another infection (or the current infection getting worse). Since Aine ended up with a lung infection, her lungs needed time to heal so we took her home on oxygen. Not only did this allow her to get the oxygen she needed with less work on her body, it also helped her entire body because she doesn't deal with oxygen deprivation. She doesn't use oxygen during the day any longer, but it is on hand should she need it.

Why can't she eat by mouth & when will she start??
Since Aine was born early, the muscles in her throat weren't fully developed, and having DeGeorge didn't help the situation :(
They found out at the hospital that she was unable to keep food down and was aspirating it into her lungs so they put the G-Tube & Nissen into place. This helped her thrive & get the nutrients she needs to be able to grow.
So.. when will she be able to eat like a "typical" kiddo? I honestly don't know - the answer could be never. She may always have to eat via a tube - but this does not make her any different than you or I. It makes her Aine - the girl who doesn't have to waste time chewing her food. The girl who gets to run and play while she is eating without fear of choking. The girl who can sleep, eat, and dream all at the same time. With that being said, there is no reason to feel sorry about her eating through a tube - if every kiddo was born with a tube, life would be a little easier when it came to that nasty tasting medicine :)

That POOR Baby
This I must say is the one thing that bothers me the most when it comes to Baby Aine. She may not have had the smoothest start to life, but she is one of the strongest people I know. I have been told that I am very strong person - but I am nothing in comparison to my daughter. She has been through 3 open heart surgeries, multiple general surgeries, transfusions, hospital stays, and the list goes on and on but she is here with us. She is happy, she is growing, she is thriving, she is learning, she is sitting up on her own, and she is most of all Loved by everyone that comes across her path. If you didn't know that she had a bad heart you wouldn't think of calling her a "Poor Baby" which is the way we prefer it.

As difficult as the decision has been, we have decided to share all this information with you to give a better understanding of Why, What, When, How, etc. We will always try to answer questions as honestly and openly as we can. We just ask that you not feel sorry for Baby Aine or Liam. Liam has a better understanding of what is going on than most adults and they are both wonderful kids, love life, and just want to be kids.

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