Our trip to Philly

      Our trip to Philly went off without a hitch! We arrived very late Monday night and navigated our way to the hotel. Who knew Philly had so many highways and toll roads? Unfortunately, due to lovely Hurricane Irene, we ended up eating in the hotel at 1am because we couldn't find an open food stop. After our quick dinner fix, we were off to bed with much anxiety and high levels of anticipation.
    Tuesday morning, we were up early and on our way to the Children's Hospital of Philadelphia otherwise known as CHOP. I have never seen a hospital so beautiful. The decor is definitely made to put children at ease. We made our way to the Fetal Cardiac Center where we started off with a two and 1/2 hour long ultrasound. They measured everything from her mandible to her toes and all looks fantastic. She, like usual, did not make it easy yet the ultrasound tech was very nice the whole time she struggled. After that, we moved on to the fetal echo. No surprises there, luckily and we moved on to our consultation with Dr. Rhychik, our social worker and the nurse coordinator. They were so very nice and explained the whole process from start to finish about what we could expect, barring any complications.  We then made our way to filling our paperwork and we met with a very nice Maternal Fetal Medicine Doctor. After going through all of the questions, she felt as though I would be better off delivering at the hospital across the street due to my history of perciarditis. The delivery unit at CHOP does completely uncomplicated deliveries because they do not have an adult ICU if something were to go wrong. The doctor tried to get us over to the HUP delivery unit, but wasn't able to so I will have to go meet with them when I go up for good. I was disappointed at first, yet this journey is not about me so Olivia must be top priority. We finally took a tour of their CICU and the cardiac step down unit and asked any last minute questions we had thought of that day. We left the hospital with a sense of comfort and excitement. It all just felt so right.
  We then journeyed to The Ronald McDonald House in Camden, New Jersey. Camden, New Jersey isn't the best neighborhood in New Jersey and they had warned us ahead of time. When we arrived, the house was beautiful. It isn't the best surrounding area, but they have a lot of security and do everything they can to keep it as safe as possible. Because the Ronald McDonald House is run on a first come first serve basis, we placed our name on the waiting list, yet won't know if we will have a room until we get there. If worst case scenario occurs, we can get a room in a local hotel and wait until they have an availability. We also found out that because they don't have medically trained staff on duty, someone old enough to drive must stay with me the whole time in case I go into labor.
   After the long day, we headed back to the hotel for a nap and to recharge before we met one of Brett's best friends from high school for dinner. It was a nice change to talk about something other than our sweet sick angel. That dinner was the first real meal we had had since we got in town and we enjoyed every bite. We didn't realize how much we took our good home New Orleans food for granted. Tabasco sauce will be a necessity when we return.
   This morning, Brett woke up early to talk to a radio station about the fundraiser. Man, was he nervous. I woke up to him practicing and trying to think of anything and everything they might ask. When the phone rang, he pulled it off without a hitch. He was cool, calm and collected.
   Our trip home was uneventful. The plan arrived 20 minutes early and we were very happy to see our two excited munchkins waiting in the car for us. Tonight, fundraising crack down takes place. While we have been away, our two auction queens have been finalizing items and putting together last minute details. We must finish all the program information tonight to get it to the printer tomorrow. Tomorrow night, we have to finalize all food items and whether we have to pick them up or if they will be dropped off. It is hard to believe that this fundraiser that was so far away 3 weeks ago is just around the corner. A week and a half doesn't seem like enough time, but we know with the help of all of our family and friends it will be a huge success.
    Tomorrow, we get back to work, football, homework and time will fly by. 5 and 1/2 weeks, we know will pass before we know it.

Nathan's 2nd Grade Class wants to help!

This is what his teacher sent out to all the parents in the 2nd grade, we are so touched by his teachers and his school. Here is the letter:

Second Grade Service Project-

Our very own Nathan Williams will be having a baby sister in November. The family has learned that she will be born with a defect called Hypoplastic Left Heart Syndrome. Nathan’s mother will travel to Philadelphia to have Baby Olivia so specialists there can perform surgery on her when she is 3 days old. Without the surgery, Olivia would have no chance at life. She will have 2 additional surgeries by the age of 3 years. Our second grade class wants to help the Williams family throughout the year to provide some comfort during this difficult time. Soooo….

Friday, September 9 will be Olivia’s Heart Day at school! Second grade families will be needed for different responsibilities. Thank you in advance for opening your hearts to the Williams family J

Nathan is also concerned about his recent fame and that strangers will act like they know him now. So strangers you are warned Nathan's guard is never down and he is unfazed by his recent stardom! After all his public speaking career is just kicking off, and and his picture was on the local news 3 times! His first major public speaking engagement will be after church in front of the entire school next week. "Nathan are you nervous," asked Melanie to which he replied "Nope................ well maybe a little!"

Olivia's Heart on WWL Medical Watch

Melanie is going to be famous

Tonight on the local news at 5PM Olivia's Heart will be the medical report done by Meg Farris on channel 4 (or 3). Meg interviewed us yesterday and to our surprise she is going to air our story tonight. We can't thank WWL enough for getting out the word about HLHS and sweet Olivia. Everyone in our New Orleans community has been so great to us, this is such a great city with wonderful people. Now more than ever I can say I truly love New Orleans!

St. Clement of Rome's 2nd grade class is making it their class project for the year to help our family and raise funds and HLHS awareness. The first thing they are doing is selling wristbands on September 9th, and the whole school can wear red shirts in support of Olivia. On September 7th Nathan, our 7 year old son, is going to speak in front of the entire school after church. He has already spoken to both 2nd grade classes and his public speaking career is growing from there!

For all the fundraiser planners out there, I have a new respect for you and how tough it is. We had another meeting last night with all our family and friends and everybody is ready to get things finalized and rolling. September 9th is going to be so much fun, bu I can't wait until September 10th, I plan on sleeping very late that day.

Planning

We have booked our plane tickets to go to Philadelphia Children's Hospital for a whirlwind of appointments August 29 - August 31. We are getting a second opinion in Philadelphia. We are now choosing between Ochsner and Philadelphia. If we choose to go there it will be the first trip of many. Possibly come October and November the distance between our family will be pretty huge. It's starting to set in how tough it might be to go to Philly, having Melanie away for a month, and then the kids having their lives turned upside down. If we do go to Philly the toughest thing for Melanie will bed elivering away from Ochsner. She is a labor and delivery nurse there and has so much history working there. She will definitely miss being surrounded by close coworkers and friends when she delivers.

Planning this fundraiser is a great distraction but I wish Olivia could be born and she could be sleeping in her little crib in our bedroom. I doubt we'll get much sleep monitoring every little thing we can. That would be too easy then, I'd skip over the worry a parent experiences while their child has their heart wide open for the surgeons to see and cut and sew. I'd miss out on a call from Melanie saying get to Philly ASAP. It'd be nice to skip over that part. It'd be nice to skip to Year 3 after Olivia's final open heart surgery, and knowing we have climbed the mountain and can finally take a breath. Our little girl finally would have a normal amount of oxygen streaming through her blood like every other child. She might lose all the races at school, but she'll have the coolest scar out of all of her friends. If we skipped the whole experience then I would miss all the love and support from our friends, family, neighbors and community. I think having so many people praying and thinking of Olivia and our family is going to be one of the best things to come out of this entire experience.

Yet we aren't there yet another month or two until November. The tension, nervousness, and helplessness are the only things I can feel right now. I appreciate everyone reading our blog, it is great knowing how much support our New Orleans community is showing us.

St. Clement of Rome Men's Club

I can't thank my fellow brothers of the St. Clement of Rome men's club enough. The men's club decided at their last executive meeting to have the night be in Olivia's honor. The 50/50 was for her, and they let Mark Plaideau introduce me, and then I talked about HLHS, her surgeries, the fundraiser. I also mentioned selfishly how it sucked that all this is happening and I was offered a head coaching position for my son's 7-8y/o football team. I love coaching Nathan's sports and I guess I was just selfishly disappointed I might not be able to do it. We will see though. I don't know if it came off bad or not, but everybody at the men's club was so supportive of Olivia. The guy who won the 50/50 turned around and bought 4 tickets with his winnings to the fundraiser. I think i'm saving my man tears for when Olivia gets here and when I auction off my Saints season tickets, but I was getting a little teary talking in front of these guys tonight. I held it together though, the beer helped. St. Clement is amazing and I can't thank the men's club enough. Tonight we raised $280, and one dad came up and said he'd donate $1000. I don't think i've ever said Thank You more times in my life than I have these past few weeks and over the next few months. Thank you for caring, thank you for saving Olivia's life, thank you for being there for us, thank you thank you thank you, and thanks for reading!

Tips to canvasing a neighborhood

While trying to get the word out today I have learned many things:

1. Don't canvas a neighborhood in flipflops: I thought it would be a quick trip up the street. I should have worn tennis shoes. There are alot of ant piles on one street.
2. Don't canvas at noon: Noon in Louisiana is way too hot to do anything outside, even if you dress accordingly.
3. Don't forget the water: I didn't think it would take that long, yet 45 minutes later for one street... I was desperate for water.
4. Don't do it alone: Hitting every house by yourself makes you look like you are potentially trying to break into houses.
5. Don't go down one side of the street at a time: I tried going down one side at a time, yet when I went to do the other side, people were coming out of there houses and giving me the stare down.

So now, I know what I need to in order to do it the right way. Next time, I may even bring the car.

Major milestones this week

This week we have reached several major milestones.
1. Delilah turned 3 on Tuesday! I can't believe it was only three years ago exactly that I was sitting in the NICU watching her under double phototherapy and crying because my beautiful baby girl was having SVT for no reason.
2. Nathan started the 2nd grade today. He has real textbooks, like really serious ones that are heavy for even me to carry. He took his first day in stride and like it was no big deal was a trooper getting back into the routine.
3. Delilah starts Pre-K 3 tomorrow for half a day and will be in big girl school with a uniform and all.
4. We held our first fund raiser meeting this week and had a great turnout. We have started to get gift certificates and donations in the mail so coming home to get the mail is like Christmas but better everyday.
5. I am slowly starting to think of October and when I have to leave my babies behind. I started a meal train, thanks to Ann Theriot's suggestion for meal donations, that will help Brett out when I am not here. Here is the link:http://www.mealtrain.com/?id=mu1v2ksfwm6t
6. I sold my first tickets to the event to the awesome unit secretary and her husband where I work.

Now the bad for the week:
1. Naturally, all of this plus school and work is taking it's toll on me. I have been getting to bed later and later each night and I am definitely starting to feel it. All of the stress has also started to make me contract. I am way too early to have Olivia yet, so I am trying to squeeze in rest when I can and hydrate as much as possible.
2. My anxiousness about leaving town has me waking up in the middle of the night to be sick. I have never been this sick for any pregnancy. Thank God this is the last one.
3. My sweet dog from childhood passed away today after 13 years. he was such a sweet pup.
4. CHOP billing after being rude with me was very nice to Brett and straightened out all of the insurance for when Olivia arrives. My insurance still will only cover half, but at least she will be covered.

So as you can tell, busy for us is an understatement. I hope to have more information of the fundraiser and major donations soon.

Frustration with CHOP

Buy tickets to the fundraiser! (link for smartphones/iphones, they can't see the link on the right)

We were ready to get our first plane tickets to Philadelphia for August 30th, but it couldn't be that easy. The reason we need to go to CHOP is because they need to do our first set of prenatal appointments. However, the insurance lady is trying to tell us Melanie's vaginal delivery is going to cost us $100,000. Melanie says they do tons of deliveries at her job and maybe they bill out $ 13,000 a delivery. I have spoken to 2 moms who went to CHOP and their total billed for prenatal and delivery might have us paying $20,000 after Melanie's bad out-of-network coverage splits the bill with us. It just seems like the lady is trying to scare Melanie away. And she was saying the baby couldn't be under my (Brett's) better insurance, even though my insurance says from the day the baby is born it is on my insurance. Does CHOP not want us? I'm going to inquire further today but if it turns out they don't want to work with us then I guess we are going to have to go to Boston or Houston. It was a pretty frustrating day.

CHOP supposedly does 70 of these single ventricle procedures a year. They are averaging only 1 or 2 hours on bypass, and a much quicker surgery than other places. Quicker recovery time. There survival percentages are over 90%. They even have an interstage nurse dedicated to talking to us once a week between each surgery, collecting all of our weights, pulse ox's, etc. We are very impressed with CHOP, but we don't want to make this decision based on money, but there is a big difference between paying $40,000 total to paying $100,000 or $200,000.

Plus one of our bands dropped out of our fundraiser today, Louisiana Spice. Hopefully no one else drops out. We had a meeting last night and amazingly 20 people showed up, family and friends.

Good news healthy baby bad heart

Buy tickets to the fundraiser!

We had a growth ultrasound today. Olivia is measuring just right, on the 55th percentile. All her organs and pieces are right where they need to be. Finally some good news. Then we heard the microarray for our amniocentesis was all negative 46 or 48 healthy double X chromosomes. All girl and all healthy.

Children's of Philly (CHOP) called us today and it was reassuring to hear someone so confident about what we needed to do and diagnosing it exactly. I found out today that there is no left ventricle that can be seen, so it is definitely HLHS. We are planning on going to CHOP at 30 weeks, the beginning of September probably. Ever doctor we have talked to in town keeps saying go to CHOP, at some point you have to take advice that is given to you.

Fundraiser planning is going well the family and friends are helping so much, I think it is going to be a huge success. We are also going to get a lot of media attention hopefully, and get some good HLHS awareness out there.

Come to the fundraiser and bid on 2 saints season tickets, 6 hour charter boat for 3 people, 2 tickets to a playboy golf tourney before party, 4 spots on a mardi gras truck float and who knows what else. We have a band too! By Friday I think we'll have 3 more bands. Good night and thanks for reading our blog.

Today has been a difficult one...

So as Brett posted earlier, I have 10 weeks until I have to be where ever until I deliver. You may be thinking.... wow 10 weeks that seems like a long time and for many pregnant women 10 weeks isn't soon enough. Yet, for me I am looking at it as I only have 10 weeks. It seems as if everyday comes to an end way too soon. Today, it all hit me while I was sitting waiting for my little man, Nathan, to finish at the dentist. He is old enough to go in  by himself and definitely doesn't want his way "not cool" mom to hover. While I was sitting, thinking about my agenda for today, I lost it. This poor man walked in and didn't know what to do. He just kindly sat on the other side of the room.

      For me the most upsetting thing is the time of year that this is all falling around. Thanksgiving for my family is a major event. I was so excited about showing little Olivia off this thanksgiving to all the relatives we rarely get to see. Yet, that won't happen. Then, I was thinking about Nathan's 8th birthday with is on October 23rd. This made me think of the times my mom traveled on my birthday and how much it made me ache on that day. Then my thoughts wisked to Christmas. Christmas time is my favorite time of year. Ever since I was little, I love setting up Christmas lights, putting up the tree and listening to christmas carols. This year, I will most likely miss all of this. So naturally, 10 weeks for me is not enough time.Yet, my ultimate goal is Olivia's health.

     I am a mom first. I love all of my children the same. So while it is hard for me to cope with Olivia's condition, it is also just as hard for me to know I will be leaving my other two babies behind. I hope they will one day understand how much love we have for them. They are the reason I wake up everyday and the hope I have for our future.

Just 10 weeks till Melanie relocates

Even though we still haven't decided between Philadelphia or Texas yet we will probably be relocating Melanie in 10 weeks. Philadelphia says they like to have the moms there from 36 weeks on. They induce at 40 weeks. Melanie is really starting to get upset about being away for so long. Possibly missing Thanksgiving (big holiday for her family) and Christmas. Olivia's going to be worth all of this, and more. A big concern for all HLHS parents is siblings with healthy hearts. This first year Olivia's always going to need special attention. Will Nathan and Delilah always hold these decisions against us? We could go to Children's here, but my gut just keeps telling me she needs the best, go to the best heart center.

On an HLHS group on facebook, several moms were recently discussing how their heart healthy children felt so forgotten, and overlooked after their HLHS bundle of joy arrived. Some woman had an older teenager who still holds it against them. Raising Olivia is going to be raising a child, but on steroids. Feeding tubes, reflux all the time, non stop doctors appointments and scans. Melanie will possibly be away from home for 2 months for just this first surgery. She will have visitors flying up, and I will bring the kids up a few times. I will probably switch out with her at some point. Then we do this all over again at 6 months. I think the brightest spot in Nathan's eyes will be flying up to Philly and playing in nonstop snow. I think I am a little excited too. Here's to hoping there is some good snowball fighting terrain near the hospital or wherever we are staying! I guess we are leaning more toward Philly.

Back to the fundraiser, ha ha ha. Eric Paulsen news anchor for WWL news has agreed to MC the event. We don't have any bands yet, but feelers are out with 20 bands probably. Worst case scenario Eric Paulsen does the news live from Generations Hall, ha ha ha. The Hot 8 Brass band of Treme and Jazz Fest fame are very interested and will get back to me Friday. I have my fingers crossed, they are an awesome brass band. So many people are coming out of the woodwork offering help, getting auction items, food and liquor donations. Our family has been amazing in helping, as has Jennifer Marrone, and Melanie's sisters. We are signing a contract with Generations Hall today possibly.