Friday, December 15, 2017

Unfortunately we have a reason to start posting again - heart catheterization

It has been since July 2015 since our last blog post.  The reason being we’ve been enjoying life with our little lady as though nothing is wrong.  Sure we would go to cardiology appointments and her usual symptoms but for the most past life has been pretty normal.  Her usual symptoms were heavy breathing with activity (even minor activity), tiring out quicker than other kids, sometimes complaining her heart hurts.  Every cardiology appointment has always ended with her getting rockstar status.  In the past few months we’ve been noticing Olivia slowing down a little more, getting tired quicker, more ornery, more complaining and whining in the mornings.  Her oxygen saturations still are decent never below 86%, sometimes as high as 92% but we feel like it’s trending lower than in the past.  We explained this at our last cardiology appointment and it looks like we bought ourselves a trip to Philadelphia.

About 4.5 to 5 years after the Fontan surgery it is kind of normal to require a heart catheterization.  I feel like she is pretty lucky she hasn’t needed any other interventions or extra medicines since the last surgery.  It is time however, to go in an give her a “tune-up.”  The local cardiologist and our Philly cardiologist aren’t in agreement as to what should be done during this heart cath, but we trust that the best decision will be made by our interventional cardiologist, Dr. Glatz.  The local cardiologist feels she needs to have her fenestration closed, which the Philly card feels that there are more problems that could come with closing the fenestration.  The local card comes from Texas Children’s where they believe in closing fenestrations, but CHOP has been leaving them open.  The CHOP card said we really don’t know what we are doing, there is no clear answer so each center is trying different things to figure out what is best.  That is why we need more research dollars.

Think of the fenestration like a pop-off valve in her heart, that when the pressures get too high in there it can release some pressure.  Perhaps her heart has gotten used to using that pop-off valve and so it has never closed by itself, maybe she needs it or doesn’t need it.  Closing it could mean her oxygen saturations could get into the upper 90’s, meaning more oxygenation to her brain, more energy, less tired issues.  However closing it could cause complications that could require surgery, or cause some unspeakable words in the HLHS community (PLE... google that).  They do some tests in the middle of the heart cath to see how her circulation will handle the closure of the fenestration.

The other option during the cath is to not close the fenestration, but clean up things or do nothing at all.  Clean up things means that they would coil or plug her collaterals that have formed over time.  If you remember, Olivia, has had quite a history with collaterals.  She has had several plugged since they were so large, and a few coiled.  A collateral is the body’s way of trying to get Olivia more oxygen.  Her body is saying screw this HLHS I’m creating my own pathway to get us more oxygen, think of it like rogue blood vessels.  Sometimes you have good collaterals which help, or bad ones that siphon more blood away.  The larger this network of collaterals gets the worse things get, but it’s a slow process.  After her second open heart surgery a huge collateral formed since the pressures changed so much, and we had to get a cath a few days post-surgery.  It’s pretty crazy.  That is why we are saying tune-up.  Since CHOP isn’t a big proponent of closing fenestrations, they will probably just be coiling and plugging some collaterals.

No matter what if they do an intervention Olivia will be staying overnight in the hospital while they monitor her, if they do nothing then we’ve got some time on our hands to enjoy Philadelphia.  The plan is to be there for 4 days starting this Sunday.  Pre-op stuff is on Monday, Cath Tuesday, and back on Thursday.  Everything is going to go as planned because thinking anything else is not worth thinking about.  During this whole process Melanie has been the worrier and I have been the “nothing is wrong until someone tells me it is wrong.”  We are back in our corners of worrying, and not worrying waiting for all this to play out.

The biggest issue is that Olivia isn’t 3 or 4 years old, or even a baby, a 6 year old knows what is going on.  A 6 year old is scared about what they are going to do and how they are going to do it.  We have been delaying telling her but last night there was no more delaying it.  She has been telling people she is going to Philly to get her heart looked at, and so her dance teacher last night said “I heard you’re going to Philly, what are they going to do?”  I told her a heart cath to tune her up.  On the way back to the car Olivia was like, “what did you tell her, what are they going to do to me.”  She’s known for a week or so that she was going to Philly but we didn’t tell her exactly what was going to happen, just that she would see the doctors.  She also has been bragging to her siblings about having all sorts of mom and dad time just to herself.  It was starting to come together in her mind that it might not be all roses.  In the car she started crying saying she was sad and wanted to know exactly what would happen.  I tried to change the subject but she wasn’t letting it go.  Melanie and I wanted to tell her this weekend but we ended up telling her that night. She wanted it to be a big family talk with her siblings included.

Olivia cried so much with each detail, which included fly to Philly, pre-op appointment, echo gel scan, a walk/run test.  Then even more when we talked about the silly medicine.  She was really pushing for the details of what would happen after the silly medicine.  We focused on the fact that she had done this 4 other times and that she would be okay like all the other times.  We did say that they would be looking at the inside of her heart to see how everything was doing.  She eventually started laughing as we made jokes about all the ice cream she could eat after and all how silly she has been in the past on the silly medicine.

It’s going to be an interesting few days.  On a good note we were able to get a spot at the Ronald McDonald House of Southern New Jersey again.  It’s going to save several hundred bucks in hotel bills.  We’ll update you guys on Monday after all the pre-op stuff.

Sunday, July 26, 2015

Summer :)

   Even though it can be so hot during the summer, we love to get out there and enjoy time together.
    Olivia is getting ready for big girl school and we have her uniforms and supplies all ready. She has been looking forward to this for so long. She is in a size 5-6 and is growing like a weed. She loves bossing her brother and sister around and loves to swim.
   We have postponed our trip to CHOP until spring because she is doing so well and her doctors don't see the need to mess with what is working well.

Special place in our hearts

     We will be forever grateful to the wonderful Marrone family. Because of them and their beautiful angel Mia, we were able to have someone to talk to in order to get us through the roughest times of my pregnancy and Olivia's diagnosis. It was their unselfish giving of themselves and the story of beautiful Mia that inspired us to be Olivia's biggest advocates. We will be forever in debt to this family for their kindness and generosity. 

In honor of Mia Grace Marrone... a beautiful angel.

Monday, June 29, 2015

Miss sassy pants.....

    Olivia has and always will be a little sassy pants. We have come to expect her to keep us on our toes. Sometimes are more difficult to laugh at than others. I know, it is her fighting spirit that keeps her here and growing everyday. That still doesn't make it easy when she decides that no matter what she isn't going to listen. Her new favorite thing in life is gum. She will do just about anything for one piece. I hope bribery stays just as easy as it is now.
    She has been growing and changing so quickly. It is sad to think she is our last little one and she isn't that little anymore. She is in 5/6 clothes at 3 years old. Before I know it, Delilah and her will be sharing clothes. Below are some pictures from January to June of this year. Enjoy!

Saturday, June 20, 2015

The big day

Today is the big day for the dance recital. We ran into a huge couple of hurdles which included me going to buy light pink tights 15 minutes before the show and dressing her in the hallway, but she did it. She was so excited to get up there and dance. She really loved the end when she got to get her flowers from her family. Her are some pictures of her and Delilah during dance rehearsals and their official dance pictures from this year. 

Saturday, June 13, 2015

Major milestones

      Next Saturday, we will reach a major milestone in Olivia's life. She will attend and dance in her first dance recital. She has relentlessly practiced her tap and ballet dances each night over and over again. She loves getting her bun done and putting on her stage makeup. 
     There are times when we look at her and overlook her hlhs completely.  Then there are times when you just can't.  I was so happy to see that in her class picture you can't even see her zipper (scar). I mentioned it to Brett who thought I was focused on the wrong thing. In my opinion, it was the perfect thing to focus on because when standing next to 13 other 3 & 4 year olds,  you can't see anything different about her. We will always know just how special she is, but we also want her to be normal too. At dance class, she is completely and utterly adorable and our little star. Seeing her dance and smile on that stage will be a dream come true for me.

Sunday, November 2, 2014

Happy 3rd Birthday Princess

We had a fun and exciting party for Olivia's third birthday. We invited friends and family and celebrated with tacos and princesses. Olivia went from sun up to sun down without a nap or even really resting. She has truly turned into a bright and beautiful little girl. Gone are the days of diapers and babies. It is so wonderful to see her personality and how excited she gets over the little things. She is a true ray of sunshine and people flock to her. Since her birth, I have known she was here for a reason and that she had a big job on this earth to do. Yesterday,  watching her with everyone made it crystal clear that she is going to do even greater things than I can imagine. I am blessed to be able to witness her greatness and will forever be in the debt of the wonderful people who helped get her there from CHOP and all over. She is mighty and has quite the sassy roar.