Friday, May 24, 2013

Fontan... The dreaded date is...

We were finally contacted by surgery scheduling Monday to pick the day of Olivia's third open heart surgery. The fontan, as it is called, will convert the right side of her heart to the completed single pumping chamber. This surgery, while it is hopefully the last, will not fix her heart. It is just a fix so she can grow an a function with what she has.
   Dr. Spray is her surgeon and he is a very popular guy, so we had limited options of dates to pick from. We chose August 15th which is a Thursday. We will fly up the 14th in the morning to make a pre-op appointment at 2 pm.
   It took a bit for all of this to sink in. We knew it was coming but by having a date it makes it more "real". We are slowly starting to make flights, rental car arrangements, and school arrangements for Nathan and Delilah. It just so happens that the first day of school is August 14th. We may not be ready, but we know it is necessary. This summer, we will have to fill with lots of fun, firsts, and memories. August 15th... Watch out here comes Olivia to kick some butt.

Wednesday, May 15, 2013

Getting back to the basics

     Recently, Olivia has been doing wonderful... Knock on wood! With this smooth sailing, we have been able to get back to the basics and create a nice sense of normalcy. We go to the grocery, play at the park, watch siblings games and dances, go to Disney on ice, and even celebrate holidays like it is no big deal. It has been so "normal" that we have let our guards down a bit too. Now trust me, we have never been the don't touch my child parents- with two older kids we just can't physically do this- but we have been more cautious with Olivia then say our other two when it comes to things. I have to tell fellow heart families out there, it has been kinda awesome to let go too.
     When we found out about Olivia, I worried. I freaked out to the sense I was so overvigilent with her I noticed everything. This served us well in the beginning, but as she grew... Even our cardiologist thought I was on the verge of psycho. I would go and ask questions about things that were not significant and at the time get very upset if they blew me off. Since then, I have learned that I know Olivia pretty darn well and if something is up, I won't miss it. Our cardiologist has learned this too, so when I am serious he listens.
    Olivia, like mentioned yesterday, is growing and fast. This makes me sad, but also happy. It tells me, we are doing an excellent job, but also makes it more obvious that she won't be a baby much longer. So now is the time to make sure I treasure the everyday moments. I sometimes wonder if this is just the calm before the storm (Fontan). Am I setting myself up for a huge setback? Will I be disappointed with myself for having let go of my guard? These are the questions that I am asking now. Kinda silly, I know.
     So for now, we treasure the "normal". We look forward to new adventures and moving on to big girl accomplishments. We know that the road ahead is going to have potholes, some bigger than others. We also know that we wouldn't trade a day on this road for anything else.

Tuesday, May 14, 2013

18 months and a big girl

Today, I brought Olivia for her 18 month well visit. She is 34 inches and weighs in at 28 lbs and 6 ounces. She is the average size of a 3 year old. She totally impressed her doctor who was amazed at her speech and development. She was also surprised because Olivia does not display the average white coat syndrome that most long term sick kids do. She gave everyone a hug hello and kisses goodbye... Even the nurse who gave her shots. She recieved a wonderful cocktail of three immunizations today. We have to go back in four weeks to get two more. We need to catch up before surgery number 3. She has been a little more ornery than usual but a little bit of tylenol and she is our sweet little girl again. She has amazed us all with her determination and will. It is a nice treat to have the pediatrician rave about how great she is doing.

Sunday, May 12, 2013

Mother's day

Each and every day, Olivia brings something new for me to cherish. You would think by this time of my motherhood career, I have seen and done it all. This is so untrue. Each child has taught me a huge life lesson. Nathan has taught me that I can accomplish anything. Delilah has taught me that sometimes you have to stop and dance to let off steam. And lastly, Olivia has taught me that the greatest moments in life aren't the ones planned. It is the small hugs and kisses and smiles along the way that leave the biggest memories. I look forward to many more mother's day celebrations with all three of my babies, but truly everyday is just as special as today.