Jan/Feb issue

I have received information from the editor of NOLA baby and family magazine that they are going to publish Olivia's story in  their Jan/Feb issue. I am so excited!!!!!! They want to make it her story with the emotions and journey and have two sidebars with statistics and information. They are going to make it 1 1/2 pages long and have pictures of our sweet girl too. I am over the moon that we can help raise awareness and spread Olivia's story.

Olivia's 1 year portraits

We got the proofs back from Olivia's modeling session, HAHA. I wanted to put the link up so everyone could view all of them. They came out fabulously thanks to Ashley Bel.

Our baby is growing up

   Today marks Olivia's first birthday. This day has been one I have looked forward to and hoped for since early July 2011. Could we do it? Could we protect her and speak up for her when she needed it? Well, I'm happy to say we DID.
    My sweet Olivia, you have taught me not only how to be a better mother, but also how to look fear in the face and conquer it. Everyday I see you, I see something new. Looking at your scars, I see healing and forgiveness. Looking at your eyes, I see honesty and truth. Looking at your smile, I see love and laughter. Overall, I see a million possibilities of what can be.
   I look forward to watching you grow and standing up for you when you need me. I can not express how grateful I am for you. I can not tell you how different life would be without you. You are perfectly imperfect. It is an honor to be called your mother. Happy birthday sweet potato pie.

Climbing the mountain: 1st Birthday Overlook

1 year of so many unfathomable emotions, experiences, memories, up and downs have gone past us by.  Olivia has survived her first year.   She keeps crushing all the goals we set for her: get past her Norwood, survive interstage, get past Glenn, survive to 1st birthday.  I feel like with Olivia we just have to take it a year at a time.  Riding in the car with Melanie this morning, with Olivia giggling in the back, I said "now let's make it to her 2nd birthday!"  She's gotten the best care from so many doctors in Philly and Louisiana, we are giving her every chance possible to thrive and surpass our biggest goal for her; be completely happy and to live long past Melanie and I. 

Looking back through the year besides loving the heck out of each of our kids, the biggest feeling I have had is helplessness.  I am helpless because I feel that any day or night Olivia could have a huge setback and never recover from it.  She isn't a ticking time bomb, but gradually changes can happen and things might get overlooked.  We really don't know her true current status unless she was getting echo's, and cardiac mri's every week.  The doctors say she looks great, and is a model HLHS baby.  In the back of my mind there is always the constant worry and doubt.

I am a year older as well, with a good bit more grey hair, but a completely different perspective on life.  A year and a half ago I was so carefree, and living it up.  I had a few hobbies I was very passionate about, like fantasy football or being a crazy Saints fan.  Before if I missed a quarter of the Saints game I'd be freaking out, now it doesn't matter.  Now I'm just cherishing every minute I have with my children and family.  I find that the things that were important to me then are very trivial now.  It might sound sad, but I feel like the happiest guy alive.  I have my wife and 3 beautiful children and Olivia just turned 1.  Nothing in life is better than this. I feel vain talking about myself on Olivia's birthday but I was hoping to frame how I have felt this year, and just how exciting this milestone is. Today is the biggest day of our families' year because we have made it.

The year ahead will probably be more of the same feelings, with tons of doctors appointments, a trip to Philly, a hospital stay or three.  I have no idea, but my goal for Olivia is to make it without needing the 3rd surgery.  Hopefully, that can wait until next year or the year after.  Possibly after her 3rd surgery we won't have all of these short-term goals, and we can just focus on being a little more normal.  I know Olivia will never be normal, but hopefully the Fontan flow will work with her body and allow her to live a long happy life without needing any extra surgeries or a transplant.  My fingers are crossed! 

Happy Birthday my sweet little princess Olivia.  You are a true Xena warrior heart princess and we are very proud of how far you have come and will go.

       As promised, I have included the article I wrote below. Much to my surprise, I received a response from a local NOLA magazine the day after I sent it out. The editor is going to talk to the publisher about including it in an upcoming issue. Crazy!!! I also received a response today from Baby Lifetime. They wanted "our story" to include in their magazine. I do have to say, I am shocked that the response has been this quick and such a positive one.

   I am a firm believer that everything happens for a reason. We were blessed with Olivia, because we will all make a difference.

The Beat of a Broken Heart by Melanie Williams

                “Waaaa…” The sound of a newborn baby’s cry is something that a mother thinks about from the moment a pregnancy test turns positive. Even though this was my third time around, I was no different. The first cry for my baby girl was more than just a sign of new life, but also the start of a relentless battle for her little life.

                At 20 weeks pregnant, I went for a routine prenatal growth ultrasound. During that ultrasound, my husband and I were informed that our new addition had a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS).  HLHS is a condition where the left ventricle of the heart does not form or is very small.   The mitral and aortic valves are too small or missing in some cases as well.  Imagine HLHS as having only half of a heart. Every diagnosis has varying degrees of complexity, but no matter what, each case is life threatening without medical interventions. After much research, we discovered that we were not alone in this fight. According to the CDC, (Center for Disease Control) 960 babies are born in the US each year that are affected by this disorder. Basically, about 1 out of every 4,344 babies born in 2012 will have to battle this same fight.

                Desperately trying to adjust to this news, my husband and I searched for answers. The answers we found were quite alarming. 1 in 100 babies are born each year with some sort of congenital heart defect. Some are diagnosed in early pregnancy by ultrasounds, but many are not.  With so many newborns affected each year, “why is there not more awareness,” I wondered? And so I began my mission towards CHD awareness, to make sure my daughter’s journey would be one that would make a difference.  This article, contacting politicians, reaching out to newly diagnosed moms, all are things I and other heart moms are doing. There is now even a CHD Awareness day in Louisiana. 

                Our heart warrior, Olivia Ann, arrived on November 1^st, 2011 at 5:15PM.   She looked great, but was quickly taken to the NICU for further evaluation. Olivia was moved to the nearby Children’s Hospital of Philadelphia (CHOP) shortly thereafter and her battle began 1,300 miles from our home in New Orleans, LA.

                Olivia underwent her first of three open heart surgeries, the Norwood, at 7 days old. To hand over your child to a complete stranger and trust that they will do all in their power to help her; was the hardest thing I have ever had to do as a mother. Yet, before I knew it, Olivia was in recovery; hooked to breathing machines, monitors, medications and wires coming from everywhere. My baby had turned into a science experiment. For every one step forward, she took 3 steps back those first few days, but she rallied in her own time and we were discharged at 22 days old.

                Olivia grew in the next few months and it was time for surgery number 2, the Glenn, at 4 ½ months old. The recovery was drastically quicker than the first time around, and we were home in 9 days. This was pretty remarkable, when thinking of all that comes with having an open heart surgery. 

                Since her birth, there have been times that have been critical in her battle. There have been ups and downs, and we are thankful for each and every one of them. The sad reality is that not all babies are as lucky as our sweet Olivia. Babies are not always diagnosed before birth and some often get sent home with parents who are unaware that anything is wrong. 

                As a new mom, you want information. You want to protect your baby from any harm, but do you know the right questions to ask?  Did you know that red light device a nurse puts on your finger is the same test that can save these babies?  Several congenital heart defects can be detected by this simple, painless procedure of checking the pulse oxygenation levels in the blood stream after 24 hours of life.  As you have experienced, this is an easy 2 minute test that can make a difference. It can save your baby’s life. Some other quick warning signs to memorize are dusky coloring, turning blue, trouble feeding, fast breathing, sweating along the forehead, and tiring easily. Any of these symptoms should be reported to your doctor immediately with a request for an examination.

                The sweet sound of Olivia’s coos with her toothy smile can light up any room. Our worst nightmares consist of her defect going undiagnosed, the hospital never testing her pulse oxygenation, or going home from the hospital thinking we had a perfectly healthy angel; only to find her blue and rushing to the E.R. for emergency surgery.  The best advice any heart mom could ever give you is this: request that your hospital test your baby’s pulse oxygenation.  As I wait for Olivia’s final open heart surgery at 3 years old, this is what I can do, help others and bring more awareness to the 1 out of every 100 babies born with a congenital heart defect.

References:

CDC. Facts about Hypoplastic Left Heart Syndrome. Retrieved 10/11/12.

                http://www.cdc.gov/ncbddd/heartdefects/HLHS.html

The need for change

        Recently, with Olivia doing so well, I have felt determined to make a difference and help others. My gut feeling to help others who are in our current situation or those who will be but don't know it yet is overwhelming of late. I am and always have been a huge fan of parenting magazines. Recently though, I find it very hard to open one and read an article that applies to me and Olivia. The pictures are of healthy babies who are smiling and perfect. They don't have scars. They don't have blue fingers and feet when sitting upright, but why not? I believe my baby is just as beautiful as any other baby and behind her scars are stories of survival, dedication and resilience.

     I decided that I would make it my mission to get an article in one of those magazines. I would tell our story and raise awareness about the condition and about pulse ox screening. Now everyone who knows me, knows I am not a writer. I have never had a desire to write or be published in any sense. I have always, on the other hand, been someone who wants to take care of others... hence the nursing degree. This is my chance to take care of moms-to-be that may be in my shoes in 6 months to 12 years.

     I have sent it out to a few different places and I will keep everyone updated if it is published anywhere and I will also put it up on here for all to see. My goal is to also write an article from an L&D nurse's view and submit it to AWHONN. Who knows if this will truly make a change for anyone, but even one mom or one baby is a start.
    

Time flies when you're having fun

It is hard to believe olivia is already 11 month old. Our big girl is growing by leaps and bounds. She is now 22lbs and 29 inches. She is crawling, pulling up to stand, and even taking a few steps along furniture. We are working on getting her caught up on immunizations and starting synagist season 2. The big first birthday party is slowly coming along and invites will be out soon.  Overall...looking at her major accomplishments....my breath is taken away. My sweet baby girl won't be a baby much longer.