Sunday, March 31, 2013

Sugar crash

Olivia got into the candy early this morning. She wasn't into breakfast but sure did love getting candy from the bunny this year. Now, she has crashed and is out.

Saturday, March 30, 2013

Heading home :(

After an early morning sea shell hunt... we are heading home. Olivia has a balloon to keep her company and drive us nuts. We are so glad we were able to spend 4 days together, but sad we have to return to normal life.
Here are some pictures of us in the car.....

Friday, March 29, 2013

Too much sun

Today was warmer than yesterday so we took advantage. We went to the perdido key kid's park where the kids were able to run, play, and explore. Then we had lunch and hit the beach. Olivia really is not a fan of the sand. She cries and whines until you get her off of it. For dinner, we went to a local pizza joint. Poor Delilah spent too much time in the sun and now has fever and isn't her usual happy self. Heading to bed early because tomorrow we head home.

Here are some pictures from the park....

Thursday, March 28, 2013

When its too cold for the beach...

This am it was 38 degrees. So while we waited for it to warm up... we visited the Blue Angels Aviation and nautical museum. We even got to see the blue angels perform. Here are some pictures....

Wednesday, March 27, 2013

Beach vacay

We are finally headed on our first vacation since hlhs touched our lives. As a complete surprise to the kids...We are going to Perdido key, FL for four days. There are certain things a girl needs to experience in life and the beach is one of them. Making memories as a family is also a nice extra. Here is to sand, sun, and lots of smiles.....

Thursday, March 21, 2013

Life with Olivia

    Our lives have drastically changed in the last 16 months. We went from relatively easy going people who enjoyed spending time with family to parents who jump at every noise, trip, and who aren't afraid to speak their minds at a doctor's office. We have grown to hate those "routine" office visits. Cringing at the site of a doctor just walking into the room.
   Yet, alot has happened in Olivia's little life recently. Olivia has grown two inches since December and is maintaining her weight. She has received her last dose of synagis ever. She is learning to say so many things that we really need to watch what we say around her. She has fallen madly in love with Dora the Explorer (I guess the in utero time at the rmh in the Dora room... did something). She also went to her 1st Mardi Gras and St. Paddy's Day parades. She has been a busy little bean.
    We have a planned trip to Philly in April for a follow up on a research study and while we are at it a check up with cardiology. We hope to get a fontan surgery plan so we can ditch the oxygen and move on to bigger accomplishments. We will also see ENT and pulmonology to complete our tour of Chop services.
   We appreciate all of the continued thoughts, inquiries, prayers, and comments. We have been changed and blessed all at the same time. It has been the longest, hardest, most rewarding 16 months of our lives.
The pictures are of Olivia napping on my lap. Her and my favorite place...

Friday, March 1, 2013

Everything is going fine!

It's great that when you see everybody they are always thinking about Olivia, asking how she is doing, etc.  It's difficult however to always know whether to give the short answer, the easy answer, or the long answer.  I think sometimes people don't want the long answer.

Short Answer:  Olivia is doing great

Easy Answer: Olivia is doing great just waiting on her next surgery, hopefully this summer.

The Long Answer: Olivia is doing great.  We give her oxygen while she sleeps and most of the time when we are with her.  It's a lot for our babysitters to deal with.  She's very huffy just walking from point a to b.  However, she pushes on through and has a good time playing, smiling, laughing all the normal stuff.  We go back to Philly in April and hopefully they will schedule her surgery.  A lot the Fontan (3rd surgery) surgeries are done at 3 or 4, and some at 2.  If Olivia's surgery is this summer she'd only be 18 or 19 months old.  We think she needs it sooner because of how winded and low her oxygen saturations get as she plays (which is all the time).  After the Fontan a lot of parents talk about how life gets so much better for their little ones.  We just want her to let her body do what her fun little brain wants to do.  Hopefully, there won't be too much to talk about until after we go to Philly in April.  Olivia is a part of a research study, and they are flying us up.  We are taking advantage by scheduling several other appointments while we are there. 

Most people don't want the long answer ha ha ha, the long answer is always long.  We look forward to one day all of our answers being the same.  Olivia's doing awesome, just like a normal kid!

Something you shouldn't include in your answers is what happens after the Fontan surgery.  Usually the conversation about the last surgery ends up with someone suggesting, "well last surgery and that is it?"  It's very hard and easy to say "yep, that's it."  It's difficult to give the long answer to this.  I feel like a pessimist if I give the honest answer about after her last surgery.  I usually agree with people that it is great that it is her last surgery and life will be better after it.  It's tough to always remind people that all of her surgeries lead up to this final conversion to a Fontan flow.  A fontan flow is like doing everything backwards.  Your body wasn't made to work this way but it works, it's jury-rigged.  It's like salmon jumping up river to spawn.  We will be happy and enjoy carefree life with Olivia if everything goes well post Fontan.  However, this is a lifetime condition.  We will need to not become complacent, she will still have doctors appointments, heart catheterizations, cardiac mri's.  In her various heart caths throughout her life they might do an intervention or two, coiling off some collaterals (she definitely knows how to grown them).  Research is coming out all the time about growing up with a single-ventricle, or fontan flow.  A big thing is liver damage as they grow up, staying far away from smoke or alcohol.  It will always be a possibility that she might need a heart transplant.  We plan to let Olivia live as normal of a life as possible and we'll cross our fingers on future complications steering clear of her.

If you give the long answer to how she's doing and the long answer about the final surgery it just gets depressing.  If I ever give you the easy answers, it's because I want to spare you that sad face once we get done talking.  It just makes me happier to keep it all smiles with blue skies and rainbows.   Don't get me wrong, I love and truly appreciate when someone asks me how she is doing.  It truly means so much to know that Olivia has so many people thinking about her. 
 Here's some interesting facts on HLHS medical bills:  Our insurance was billed $1.574 million
dollars since the date she was born.  The insurance company gets enough discounts to bring that number down to $352,380.