Sunday, July 31, 2011

We have a flyer!

I really like planning this fundraiser, unlike Melanie. It has taken me away from reading all the sad and happy stories from other HLHS parents.

Friday, July 29, 2011

Fundraiser.... oh what did I get myself into?

So, everyone knows that this whole journey will not be cheap. Brett and I after looking into our options have enlisted the help of many to plan a fundraiser. Today, we went to meet Jennifer Marrone and Gabrielle Gilberti at Generations Hall. We talked about what we need to have and all the planning that has to start now. We decided that our fundraiser will be held on September 9, 2011 from 7:30 to 11:30pm. We will have a live auctions, bands, a silent auction, food and beverages.

This sounds like a piece of cake right? I am still taking classes online and working full time and the kids will be starting school soon. Phew!!!! I know the night will be tons of fun and all the proceeds will go towards our sweet Olivia. Being in charge rather than just being a helper is overwhelming.

We got a name for our fundraiser and a very cool logo Brett made. I'm pretty proud of him.

Wednesday, July 27, 2011

"NO! Her name Mable," says Delilah 2y/o

We were crazy parents who told our son he could pick the next baby's name. In order to control the situation a little more we only gave him 2 names to pick from, Olivia and Mable. We knew Nathan didn't like Mable, so I guess we rigged it a little bit ha ha. It turns out, however, that someone liked Mable, Delilah was so upset when she first heard it would be Olivia. She said "no her name Mable." When Olivia finally arrives if Delilah keeps referring to a Mable, just know that is her special nickname for Olivia.

Melanie's doctor said with a congenital heart defect (CHD) your chances for Downs, Turners and Trisomy 18 are increased greatly. We got a special test done and now we know it is not one of those things. Just a happy healthy HLHS Olivia in the oven.

We visited with Deb from Children's Hospital in New Orleans and she is a wonderful lady. We got a tour of the CICU and were very impressed with their setup. Their surgeons do all of the rounding during their entire care, the baby stays in CICU the entire time. They have a really great interstage program (home health 3 times a week, OT's, PT's, pulse ox machine at home, and a scale). If we don't go to CHNOLA I hope they wouldn't mind having us for our interstage care through the time between the 2nd and 3rd open heart surgeries.

Thank you Brittany Booth (Melanie's sister), my wonderful sister-in-law for helping to spruce up the blog.

Tuesday, July 26, 2011

Progress and Donating

    Today, Brett and I went to meet with the nurse coordinator at NOLA Children's Hospital. We both have our reservations about this and that, but we don't really have anything to compare it to yet. We met both surgeons and poked our heads in to see the beautiful Mogg family.

   I also went to the blood bank today to get the information to set up a blood drive. As soon as I get a doctor to fill out the form, then we can have people start donating in Olivia's name. I also went to our local Whitney Bank and set up an account so people can donate for travel, health care costs and whatever is not covered by insurance. The name of the account is Baby Olivia Williams Fund. Any help is greatly appreciated and will go to great use in making a change for Olivia.

    I also started sending out letters to our local senators to make congenital heart defects not a hidden disease. CHDs affect over 35,000 babies a year. Way too many in my opinion. I hope to hear back from some of them soon.

Monday, July 25, 2011

The first step of many

     Today, I went and got a copy of my fetal echo and echo report. It was unreal having that in my hand and reading it. There is no denial when you see your name on the top and the diagnosis underneath, . It hits you smack upside the head. We finally got to talk to CHOP today and we Fedexed our results to the top three choices, Texas Children's, Children's of Philadelphia, and Children's of Boston. What is really scares us is if Boston says we are a candidate for their ground breaking fetal intervention that can actually repair the heart.  It was the first real step in finalizing our choice for who we will entrust Olivia to.

So far these are the problems with Olivia's heart:
Single ventricle, possible unbalanced AV canal defect, possible hypoplastic aorta, and likely aortic valve artresia.

That's it!
    It has been wonderful to hear all of the great comments of support and prayer. We know we are truly loved and Olivia has a great amount of friends out there.  Every time we find someone new who has experienced this journey, it is heart breaking to know unfortunately we are not alone. This disease has touched too many young hearts. Yet, hearing the fabulous stories of survival for these small helpless children gives us a sense of unending hope. Thank you to everyone who has shared their story with us.

Sunday, July 24, 2011

Recent information

      Many of our great friends and family who have heard the news are being so supportive. My younger sister, Brittany, has researched airfare and prices and has volunteered to help with the kids when the time comes if needed. Brett's dad and mom are both willing to pick up the kids when needed to try to keep as much as normal as possible. My parents have volunteered to come and sit with me if I have to deliver elsewhere so I am not alone. My older sister, Melissa, has reassured me that money should not be my top priority and has even said she would sit on a corner and shake a can if needed to get us funds.

     I feel as if we are racing against the clock.  We only have 15 more weeks before she is here.We have reached out to four hospitals and are sending them the fetal echo tomorrow for opinions. I am going to find out more information this week about setting up an account for donations because so many people want to help however they can. Also, I am going to the blood bank this week to set up a packet where people can donate blood in her name so if she needs it, it will be there for her to use. I will share all that info when I have it later this week.

    Brett and I are still working full time and trying to plan and prepare as much as possible. We are saving our leave so that when she does come we can be wherever as much as humanly possible. The kids start school on August 10th and making sure they have what they need and get to keep some normalcy is one of our big priorities. We did tell the kids about bean's (Olivia's) broken heart and how things will change and how sick she will be. They are somewhat confused, but they love her and are excited about her upcoming arrival. Nathan was telling us that this year was going to be a tough year.  Delilah is telling everybody she is a big sister and her sister has a "bwoken hoeart."  We also finally had Nathan pick her name it wasn't Mable, the decision was Olivia.  We all love you Olivia Ann Williams.
More to come later this week.

The beginning

        Our journey starts in a place where dreams come true. We were on a lovely trip in Disney World with our two kids, Nathan(7) and Delilah(2), when the symptoms started. Surely this couldn't be number three. We had tried for over a year and a half with no success. It couldn't be happening now. I had just restarted school online to obtain my BSN and we had finally moved on from the idea of a third child. Yet, our dream did come true, number three was on its way.

      We had decided this time around we had to know if it was a boy or girl. So on the day of our anatomy scan, we were overjoyed to hear it's a girl! We informed our family and friends and started to think of the many possibilities of names. During the ultrasound Dr. Robichaux had quietly counted the chambers, but finally gave up due to the fact that she would not cooperate. He reassured us that everything was probably fine, but a follow-up appointment with cardiology would be just for good measure. We wrote off all bad possibilities and moved on. This pregnancy was going so smoothly.

       At 20 weeks, I was hospitalized with pericarditis. Nothing new for me, but the medications I had to take meant close monitoring of her fluid and a fetal echo a little sooner than originally planned. I quickly recovered and went by myself for the routine fetal echo. After flipping and flopping and attempting to get good pictures, an hour and a half had passed and the pediatric cardiologist finally gave up. He didn't want to take away all hope due to the difficulty of the scan, yet he was pretty sure she had either one ventricle or and av canal malformation. I was stunned. How did this go from routine to horrid? I walked to Dr. Robichaux's office in a gaze and lost it after seconds in his office. Dr Mulder, the pediatric cardiologist, had already called and told him of the findings. He kindly calmed me down and reassured me that at any time I could come back for him to take a second look. I had a second ultrasound scheduled with the cardiologist in two weeks. Now, we wait.

      Brett decided to go with me for the second go round of ultrasounds. When we got there, the ultrasound tech slowly and calmly took pictures without saying much. When Dr. Mulder came back in, he confirmed the diagnosis. It is HLHS. He drew pictures and answered as many questions as we had. Dr.Robichaux called later that afternoon and asked about performing an amnio for genetic studies. I watch amnios all the time. Was this really something I had to endure? I told him I had to think about it and talk to Brett about. I lived in a fog for the first 4 days, with crying spells and sheer exhaustion. The one good thing was work was crazy and it allowed me the freedom to occupy myself with other thoughts.

     After a few days, the research process started and we hit the ground running. We reached out to other families and have found angels in disguise. We are debating where is the best place for treatment of her heart condition. We do not want any regrets and this is our chance to give our baby the best possible fighting shot. I truly wish someone would hand me a list of what to do and when it has to be done so success was guaranteed. But I have learned first hand, life is not fair.

     For those who have not heard of HLHS, it is one of the most severe congenital heart defects. It is where the left ventricle that pumps blood from the heart to the rest of the body does not develop correctly for one reason or another. Think of it as though only half of her heart is working.  She will have to have at least 3 open heart surgeries, and a tough recovery.  The first surgery is at 7 days of life, second at 6 months and the final is at 3 years old.

    We are finding out more and more everyday.... and we will update as much as possible.