If only, we could all be as carefree as Olivia is right now. She is passed out sound asleep with a sweet grin. Me on the other hand, I am panicking about tomorrow. What we will all wear, what time to leave in the am, and hoping and praying neither one of the kids open their mouths and insert their feet. I’m not worried so much about Olivia making noise, because who doesn't think baby noises are cute?, but the other two??? Here's to a day filled with many exciting firsts, it is only the beginning.....
Sunday, May 27, 2012
When you get bad news in life, the first thing that comes to mind isn’t always how am I going to make a difference with this experience? For me, that wasn't anywhere close to my thoughts when we found out about Olivia's condition. Yet, in those first few days of shock and disbelief, I had to do something. Brett focused on reaching out to fellow parents and I quietly wrote every politician in Louisiana. My letter was vague, because at the time, I was just desperate for someone to listen. I received a letter from some lady in a little town agreeing how bad the disease was but she donates to AHA, so she was sorry to hear about us. I received a blah letter from Mary Landrieu. So to say, I was over the lack of response is an understatement.
Much to my surprise, I finally received a letter from. Mr. Dan Claitor. It was heartfelt and honest. I spoke with him by email and telephone and he actually tried to help us get info about the best care for Olivia in Louisiana. He is not my district representative or in no way would his career benefit from helping a small family struggling to overcome a huge hill. He gave us his time anyway.
After Olivia arrived, he kept in touch and wanted to make an official CHD awareness day for Louisiana. I was tired, busy, and too overwhelmed to even contemplate how I could make a difference. Mr Claitor though did not forget. He has arranged for Friday June 1st to be that CHD day. It just so happens to be the day Olivia turns 7 months old. We will go to the Capitol Friday and Olivia will be the first HLHS baby to be the ambassador of sorts for Louisiana's CHD day.
Today, I think back to July 5th, 2011and know that Olivia will make a difference. Bad news doesn't always have to be a bad thing. Olivia for us and many others has a huge purpose and we are excited about all the possibilities.
Sunday, May 20, 2012
That has been our motto since July of last year. It is crazy to think it is almost a year already. We have weathered some storms better than others but we are taking it one day at a time. There are times, like this week, when things come up and I am a ball of nerves and anxiety. This is my third child, I should be a pro at all of the silly things like viruses and vomiting. Yet, I am far from it. Then it is the pediatrician calling on a Saturday morning when you know she has a million other things to do than call you, but she does anyway and that is why I trust her with the three best things in my life.
There is still the anger at the disease and how we went from being carefree to careful. We can't make plans for a year from now or even six months from now. We have to take it day by day. That has become our life. We have accepted it and we are thankful for each moment with sweet Olivia. To the everyday events, many are her firsts and each one is special. As crazy as it sounds, Olivia went to Walmart today for the first time in kenner and loved every minute. So we continue onward, trying to enjoy the little things.
Sunday, May 13, 2012
We went to Nathan's Blue and Gold banquet last night where he went from being a wolf to a bear. We all got dressed up and were excited to all celebrate together. I knew Olivia would want to eat mid ceremony so I overheated her bottle so it would be perfect for when she got hungry. I gave her the bottle and she ate like a champ. About ten minutes later, she started fussing and then choking while vomiting. I was standing in the back of church and desperately wanted to scream help!!! Thank god brett saw me rushing to the bathroom and met me to help clean it all up. She was so exhausted after, she fell fast asleep. I panicked about her breathing, noises, and color. I also spent the rest of the night shaking. She didn't do it again all night or this morning, but still worried me like crazy.