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Old 03-09-2009, 03:51 PM   #1
Somer
Make-a-Wish Princess
 
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Join Date: Feb 2009
Location: Olympia, WA
Posts: 85

Goodbye Hospital Hello Disney!!! October pre-wish trip report

I decided to sign my daugher up for make-a-wish foundation after I met Linda (mom to adorable Lydia and Tobias) through another website. She encouraged me and I'm so glad I did. I signed Jozlynn(4 yrs old) up and the very next morning I got word that her doctor had already approved her! Yesterday the wish granters came to talk to Jozlynn and she opened the door in her princess crown and tutu and said DISNEY WORLD!!!! She made a picture of sleeping beauty wearing a hat made of cheese. She was so excited to show her picture to our new "wish granter" friends. They were great, they brought a little teddy bear holding a baby teddy bear for Jozlynn(she named them "Nanna" and "Spongebob") and they also brought a little gift for our other daughter Arianna(2 yrs old) a little stuffed lamb, she calls it "monkey."

We will end up going to Disney World in October when Jozlynn will be more able to handle the heat. Jozlynn's "Nanna" will also be going. She's always a blast to have around, she dosn't seem like the typical "grandma." She's the singer in a rock/blues band

OK, a little about us. My name is Somer I am 25 years old. I have been married to my best friend Derik (28 yrs old) for almost 9 years now. I know, it sounds like I'm lying about my age, but I'm not I swear. Married VERY young (I was 16 ) but we are very happily married. Derik also happens to be the BEST daddy ever!!

When we found out that we were pregnant we were sooo happy. Then when I was 5 months along we found out that our daughter had such severe heart defects that she would probably never see life outside those hospital walls. They were not expecting her to make it through her first surgery.

To make a long story short(well, kinda) emotionally it was an extremely difficult pregnancy.I ended up staying at the Ronald McDonald House about 3 hours from home for about a month before Jozlynn was born.

Jozlynn was born with rare congenital heart defects, Hypoplastic Right Heart Syndrome (HRHS, half a heart) Pulmonary Atresia with Intact Ventricular Septum (PAIVS, Pulmonary Valve completely closed). This situation cannot support life, since oxygen-poor (blue) blood cannot meet the body's demands, Tricuspid Stenosis (Tricuspid Valve not working properly), Pulmonary Artery Stenosis (exremely narrowed Pulmonary Arteries), PFO (Patent Forman Ovale), ASD (Atrial Septal Defect) ,and Congestive Heart Failure. These defects are among the most complex and rare congenital heart problems know.

On her second day of life she had her first Open Heart Surgery. It was supposed to be a 3 hour surgery, and it ended up being 9 1/2 hours. They couldn't get the shunt to work, it kept clotting. Her vitals crashed two times then they thought that they finally fixed her so they closed her chest up and her vitals crashed again. So they immediately had to reopen her little chest and stabilize her heart. The surgeon came to talk to us and told us that he could only attempt it one more time, needless to say for the next couple of hours we were just in one constant prayer. There were a lot of tears, but in that moment was when we really felt the most calm. We had spent most of the day before just telling her all about how much we loved her, and all about our wonderful God who had helped us out to this point. We knew that if Jozlynn's little heart just wasn't strong enough, we at least had the opportunity to give her all of our love and tell her that she has already changed our lives for the better. We have a strong faith in knowing that we would be together again someday.

Meanwhile, Dr.Starr had tried to do the shunt one more time and she crashed again. It seemed like that was the end, but once they got her stable again her surgeon was able to talk the rest of the team into trying to put a larger shunt than they have ever used on a baby and it worked!! "Jozlynn is still with us, she made it through," those words from Lesley, the nurse who gave us updates every hour, still echo through my mind down to this day. She recovered nicely from her surgery, it just took her a little longer because of an infection in her incision. We had to keep her secluded at home until she was 3 months old. She wasn't gaining weight, and she looked so weak. Looking back I felt like I should have realized that the darkness around her eyes was so prominent and she never really even made any noise, she was just too weak.

Her second surgery became an emergency when she was 5 months after the pressure in her heart became dangerously high and she was having congestive heart failure. All went well, and we were glad to know that she didn't develop any tumors from the high pressure. After that, our little Jozlynn finally started thriving, although her weight was still under the 6th percentile. Less than a month later she had another heart surgery when she was 12 months. And then for the most recent open-heart she had to have injections every day for a few months to build up her red blood count and hopefully make her stronger. Mommy and daddy had to learn to give the shots, and although she dreaded them, she never complained. She even said "thank you daddy" after every one. Then she had her fourth open heart surgery just a few weeks before she turned 3 years old. (she also has had numorous caths and another surgery on her eyes)

Unfortunately, only a couple of weeks before her 4th open heart surgery, we had a housefire that took everything we owned including all of Jozlynn's toys and her beloved blankie. It started from an elecrtrical problem in the shed and VERY quickly spread to the house. I still can't belive how quickly it all went up, thankfully we all escaped with our lives. Although we had no renters insurance, we have the best friends and family in the world that were able to step up and help us any way they could. Also, we were on several different Seattle news channels and people from all over Washington donated enough for us to get back on our feet. We are extremely grateful for everyone's help.

Surgery day came and it went smoothly. The first time we went in to see her after surgery, she looked a little different from other times. Her hands and feet were warm, but the were purple. They had no idea why. They thought that her little body didn't handle being on the heart and lung machine. She was still not able to breath on her own. All we could do was wait and see if she would pull through. After a long couple of days of not knowing, she was finally stable enough to breath and her color got better.

The older she gets, the harder it is to watch her have to go through such a traumatic surgery. We are glad to say that Jozlynn is now a very happy, active little girl. She can light up a room and capture everyone's attention by her amazing, sweet personality. She loves to go swimming and go to preschool. She can just about keep up with all of the other kids. In fact, most people can't even tell there was ever anything wrong with her unless they see her scars. She also has such a great compassion for other people, especially when they are hurt. I guess she knows what it's like.

We are waiting to find out if she will need a heart transplant. We know eventually she will, but we are hoping to get through her childhood first. We are unsure how many more surgeries she will have. For now we are thankful for every moment we have with our little miracle.
__________________
MAW pre-trip report Goodbye Hospital Hello Disney!!! MAW video http://vimeo.com/7210389

Mommy to Jozlynn,8 HRHS,PAIVS,TS,PAS,PFO,ASD(heart defects) www.littlezippers.com
and Ariana,6 Heart Healthy!

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