Hanging in there....

   Every day, Brett and I trudge onward. We work hard, spend as much time with the kids after school and activities, and then when they go to bed, we do all of the adult responsibilities we have to in order to keep everyone on track. There have been multiple days when I have left my sick baby home with a babysitter, so life could go on. I get asked on a daily basis how I do it. To be honest, I don't know. I just keep going, we both do.
    Today, though, is one of the hard days. Olivia for the last three days has been sick. We have been giving her decongestants, tylenol, albuterol breathing treatments, and finally broke down today and brought her to the pediatrician. She has what they are calling the croup virus and an ear infection. All of this we can handle...it is nothing, right?
   Well that ever so present question comes back up... how are we doing it? This is when the not so glamorous side of being a heart parent  comes out. We will wake up every hour or two to make sure she is breathing. We will give her nebulizer treatments every four hours. We will sit with her in a steamy bathroom, whatever it takes to let her sleep.
      No one wants their baby to be sick. With a heart baby, it isn't just a little virus here or there. This is a life changer until she gets better. As a parent  of a heart kiddo, you think your child has been through it all. Surely, a virus will be nothing. How quickly I have been schooled in the art of viruses. Unfortunately, it stills stinks.

Sorry for my rant to all those who chose to read... having a hard day and hate to see my baby sick.

Valentine's day and chd awareness day

As congenital heart defect week comes to an end, I would like to share a letter that I have written to my sweet girl.....

Livi bean,
      In life, we all are different. Some people have things that set them apart when you look at them like scars and birth marks. You, my sweet girl, have something on the inside that sets you apart in more ways than you will ever know. You are the face of so many challenges, hurdles, milestones, accomplishments, prayers answered, and fears. You have experienced more in your short life than most adults would even imagine is possible and yet you thrive. Your smile is something we treasure and never take for granted. Your laugh is something we look forward to hearing on a rough day. And lastly, your eyes sparkle like true gems whenever you enter a room. You, Olivia, are a strong and determined little girl. HLHS to us is only a series of letters, because with LOVE anything is possible.
Many hugs and kisses...
Mommy

Status update

Olivia has had a rough weekend. We got her bloodwork back and her hemoglobin was 17.2. Good, stable, but not a drastic difference from the month before.
Next, we were at a parade Saturday night and she fell and hit her head. She had some vomiting and we called the on call doctor to check things out. Sunday, she started with really high fever out of no where. We worried so off to the ER. They recommended tylenol, love, and call her peds in the am. So, Monday to the peds we went. No signs of the flu, rsv, or what was causing her to be miserable. Blood cultures and a cbc later, the consensus was viral.
I am happy to say that after all that, Olivia is finally doing better.  No fever today and she ate a great dinner.
Hopefully she will continue to be on the mend. Fingers crossed

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.