February— a month of hearts

February is a month where we designate a day just to show our love for one another. Although it may not be known, it is also chd awareness month. For Olivia and our family, we are hoping it is not ohs number 3 month. Olivia had bloodwork drawn again today to test her hemoglobin, the amount of red blood cells in her body. Living always with low sats, we expect her to have a higher than normal number, but if it gets too high... we must look into fixing the underlying issue. The only way to do that, is to complete the three stages of surgery. So for now, February is hope for the best month. The constant praying and wishing for the best can seem endless on some days, but hope is all we have, because despair is not an option.

My miss personality

Today, Olivia and I were running errands. It is such a treat to get to spend special time just us on my day off. Well today, while riding around, Olivia was talking away. She just thinks it's cute to scream as loud as possible all the new words she has learned. So, while we complete our tasks, I enjoy the few minutes of untamed squeeling. Every so often, I would glance in the rearview window to see her smiling and waving at the cars passing by. Right before we pulled into our last stop, all I could hear was a sweet little voice singing or trying to at least with the radio. When I turned the car off.... she clapped for herself and said yea!
While shopping at Sam's, she greeted, high fived, said goodbye, waved, and clapped to other shoppers. It was the same at the grocery. She never let anyone pass without getting their attention. It was priceless.
I can only hope that as Olivia gets older she will keep that ability to see everyone with a sense of equality. That she will also continue to smile at the small things and most of all enjoy the time with family.

Oops... we forgot to update

     I'm sorry for all of our followers who haven't had any updates recently. Between appointments, school, and life in general, we don't really stop. I realized today that after I posted her pictures from yesterday, some may be alarmed at the sight of her new addition. As mentioned some time ago when we were in Philly, the doctors were worried about her hemoglobin. If it gets too high, around 19, she is at risk for a blood clot. When in Philly on December 4, it was 16.9. In early January, it was 17.7. The solution would be get her more oxygen, in theory. So, we have been doing the oxygen relentlessly when with her. We will know more towards the end of this month. If it is still continuing to climb, we may have to bite the bullet and schedule a flight to Philly. Naturally, this is not ideal.

    The anxiety and fear of the unknown brings me back to when I was pregnant with her. So much lying in the hands of doctors, nurses, and my baby herself. Everyday, I am reminded of exactly how blessed I am to have another day with her. Her smile is a window into her wonderful soul.

First mardi gras parade

For a true New Orleanian, today marks as huge milestone for Olivia. It was her first Mardi Gras parade! This time last year, Brett sat in Philly with Livi while we celebrated at home, but this year will be different. Today was the parade called little rascals. For non—neworleanians.... it is a parade made up of kids. She loved every minute of it. She clapped, waved, said hey to passersby, and immediately knew what to do with the beads.  There was a few times we had to get a snack in so the oxygen would stay on, but overall it was a great time. I just hope she gets to enjoy a lot more parades in the future with such excitement.

2012... Where did the time go???

As Olivia and I sit in the car waiting for firework shopping to end, I can't help but look back at this past year. 2012 has been by far one of the most challenging years. It has tested our love, faith, and perservarance. Yet, while so much of the year has been filled with worry, so much has also been filled with wonderful memories. Olivia has learned to walk, talk, feed herself, sleep in her own bed all night, and most of all she has learned the love of her siblings. We know 2013 holds so much uncertainty, alot of which will affect our sweet girl, but we continue to hope. Hope for her health to improve... Her growth to continue....and the love to multiply. So 2013, while you are the only one who truly knows what you have in store for us, bring it on! Olivia is waiting.

Olivia's story published

After putting Olivia's story out to several magazines, her story was published this month in NOLA baby and family. To say I'm excited is an understatement. I have always known Olivia was given to me for a reason.... She has truly pushed me to do things I never would have imagined. I hope that by getting her story out to families in NOLA we can start the discussion of CHD's and raise awareness.

Here is the link:

http://www.omagdigital.com/publication/?i=139534&p=33

Can you hear me???

We have been amazed at the words and sounds Olivia is making. She can say 10 words and definately knows how to get attention when she wants it. While we were in Philadelphia, at the suggestion of a cardiologist, we made an appointment to see an ent to check her ears. When she was a baby, olivia passed her hearing screen with flying colors and hasnt had  one ear infection. KNOCK  ON WOOD!! We are not doctors, so we scheduled the appointment for when we got back. Yesterday, I took Olivia to the ent and audiologist. After testing her eardrums, it looked  like she had fluid in her left one. That took the traditional test out of reach. The audiologist said we could try a test that is really meant for three year olds and see what happened. After sitting in a sound booth for 30 minutes and Olivia turning to noises on que I thought we were good. When she opened the door though, I knew something was wrong. There is a certain look all doctors get before they lay the bad news on you. It is a look like I am so sorry to tell you this and I am so glad I am not in your shoes. But back to the story... So apparantly Olivia was pretty consistent in her lack of response to certain high pitched sounds. The audiologist, not knowing about Olivias history, started to ask questions. When I explained that she lives in the 70's oxygen wise all the time, she immediately stated that Olivia needed further evaluation by a pediatric audiologist asap. The sooner we get her evaluated the better so it wont affect her speech. If she does have hearing loss then for christmas, Olivia will be getting hearing aids.
  As a mom, you dread to hear bad news about your kids, but when the news can make them a target for teasing it makes it even harder. Olivia's scars make her different already does she really need more? My sweet potato pie, I'll love you no matter what.