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it's bumpy in here so the pic is blury, but he is doing great! -erin

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Our hearts are heavy today with the passing of sweet baby Dean. Constantly in our thoughts and prayers are Billie and Nate. May they be comforted by God in the days, weeks, months and years ahead. We love you.

Today is day 199 in the PCICU. we survived our 48 hrs caring fot our little man. it was very eye opening, particularly related to the in home pharmacy we have to build for him. we can't wait to bring our little boy home.

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do we look exhausted yet?

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we were only sleeping in 7 minute increments. the nurses felt bad that one of our monitors was preset wrong, and finally let us shut it off and fix it in the morning...

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no matter what you may be thinking at home, this is not fun!

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happy thanksgiving dance

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the girls love this part of coming to the hospital

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This shows we have been here way too long...

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today's goal: make Josiah smile

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This is something we haven't been able to do in the 5.5 months of Josiah's life. Sit him up on our own...

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Josiah has had a difficult day, but he handles all in stride and puts on his best face and moves on... good job little man!

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look at this sweet little boy's face!

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trick or treat at the atrium

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Halloween - MUSC style

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Here are the girls singing happy birthday to Josiah! They were so cute tonight. They also each read a story to him that put him right to sleep. We had fun celebrating Josiah being 21. Just point out again how much Daylia loves the number 21, as we were leaving the hospital she said, "Wow it's dark out. It must be 21 hours!"

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Josiah can't sleep without his paci now. So we have every stuffed animal proped against him holding the paci in place. He is also sleeoing in a bouncy seat with constant vibrating going on. This boy is going to get spoiled fast. I think he deserves it though!

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Josiah has had a great day. He looked so good when we got back this morning. He has been awake and content a ton today. He even gave me a little smile!!!! That was so great to see! His cultures from Sunday morning are done growing and everything came back negative. Praise God! Josiah has been CPAPing again today and there is even talk about trying to extubate him soon. You all better get ready for that day because we are going to need some serious prayers when that happens. It's been a good day to be back

Going up to the unit with the centrifuge!

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Josiah had another surgical procedure today to clean out some fluid that had split open his incision earlier this morning. Fortunatley the MD's saw it early, and went to the OR before it became a bigger problem. It is a minor setback to the progress Josiah has shown over the last week since his surgery, but we are glad it was taken care of so quickly. Continue to pray!

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Hazyl's resting at the park. She's bee laying here for about 15 mins with all kinds of kids running around her.

We had not seen Josiah smile before last night... now, minutes before anesthesia takes him away for open heart surgery, he is all smiles. That is a nice treat!

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A quick update from my phone this morning. We are headed to Columbia for Milo's sister's wedding. I was suppose to leave last night and go to Charity's bachlorette party, but that didn't happen with Josiah's busy day. The short results of the cath lab yesterday is that Josiah is not ready for his Glen (the 2nd staged surgery for HLHS). It is evident thpugh that Josiah does need a surgery to fix his left pulmonary artery. So within a week or so we will most likely be sending Josiah for another open heart surgery. I'll write more about all this when we get back from the wedding on Monday.

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We are driving by MUSC on our way to columbia for aunt charity's wedding

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Josiah is back from the cath lab. The drugs they need to praralyze him make him puffy, but he is back safe and sound in one piece. Thanks for your prayers!

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She is practicing to be a good wife someday :-)

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all the cousins at the charleston battery. Welcome to charleston!

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our girls love their Uncle Tim

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hazyl before seeing the dentist. lets hope the after is as happy

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So last night I came home from the hospital and Milo said, "Go look at your daughter in bed." This is what I found!


This is the rest of her after she kind of woke up from me turning the lights on!

So while Hazyl was suppose to be sleeping she got into my purse and apparently found a lime green sharpie marker! Thankfully she did not color on the wall or the bed sheets or the carpet... just herself! We go the biggest laugh out it. After a bad day it was the greatest thing in the whole world to see. I love her and her huge personality so much!

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This is the story of our growing family as we deal with the implications of having a child with a serious heart defect. This is why we call it "thewilsonheart" rather than "josiahsheart" or "josiahslife." This is our family's story...as a family. We have two beautiful daughters, Daylia Joy and Hazyl Grace, who are the delight of our life. Our newest miracle, Josiah was born at 7:50am on May 20, 2009. Josiah (Jehovah has healed) Nathaniel (Gift from God) has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS), as well as an intact atrial septum. Josiah underwent an extensive heart catheterization that put a stint through his previously blocked atrial septum the day he was born. This was his sickest point to date. Josiah came through the Norwood procedure successfully, 13 days after he was born. At 3 1/2 months Josiah had to have an unplanned open heart surgery to open up a narrowed left pulmonary artery that was restricting blood flow to his lungs. He recovered from this surgery well, and at 5 months old we agreed to have the tracheotomy surgery because it was obvious that he was many, many months away from breathing on his own. The trach is a way to get us home, although with a ventilator, and Josiah is much more interactive with us because of it. At 7 months old, we were finally discharged from the PCICU, only to return to the hospital 3 days later because of high fevers. Upon returning, Josiah had another heart cath, which determined he would not be a candidate for the 2nd stage open heart (Glenn) procedure because of high pressures in his lungs. We settled in for the long haul, but just 2 weeks later, Sunday January 24, 2010 Josiah's BT shunt clotted off and he passed away and went peacefully into the arms of Jesus. Now we are processing this loss, and celebrating Josiah's precious life. We want to be a help to others. Please feel free to contact us here.

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Daylia loves her little brother so much

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This was taken about 5 hrs ago at 3am this morning. Erin and I were able to hold Josiah for the 1st time for about an hour. It was a bittersweet experience. It was wonderful to hold our precious little baby, but the circumstances as to why we allowed to hold him were a bit overwhelming. Our nurse gently lifted him from the bed, and put him into Erin's arms, with IV lines and sensor leads strung out like a broken cobweb behind him. It was wonderful, and it was awful.

The policy at the PCICU is to allow parents to hold their child the night before putting him through a major heart surgery in which he may not survive. Holding Josiah was a massive reality check.

Last night, the doctors let us know that through an echocardiograph done on Monday an addition condition called coartation of the aorta. This is a thin spot in the aorta, right where it needed to take on extra flow with the hybrid procedure. This leaves us with the Norwood as our only choice.

We kissed him goodbye at 7:30...

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Hazyl is having a blast at the Atrium of the Chrildren's hospital at MUSC. She can't decide between dolls and dinasours

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Daylia ran immedietly to the potty after this video was shot. If you want her face at the end, it is less than beautiful. However, it doesn't change the point of the song... her mother does have a beautiful face!

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I finally received a call yesterday from MUSC setting a date for the c-section. May 20th at 8:00am! It's so weird to know my child's birth date before he's even here. This planned c-section thing is new territory for me. Not only do I know his birth date but I can be pretty confident that he'll be born at 8:11am. I've been anxiously awaiting this phone call. I just wanted to know the date and now that I have it... I kind of wish I didn't. It's hit me pretty hard that this is only 3 weeks away. Having a baby always changes your life forever, but having a baby with this significant of complications has to change it in incredibly different ways. I can only imagine at this point...

I haven't posted an update about Josiah in a couple of weeks because not much has changed. That's a good thing at this point. I'm now 31 weeks. Hitting 30 weeks was kind of tough for me because it made me realize how quickly Josiah is coming and how soon we're going to have to begin dealing with all this. That's a super scary thought to me. The emotions of all this are starting to catch up with me I think. I've been super tired the past couple of days.

I've been able to get in touch with a woman from our area that just brought her baby home from MUSC a couple of weeks ago. They've been living what we're going to be living for past couple of months. It was really nice to talk to someone who's been through a similar situation, but again it made the reality of Josiah's condition sink in more.


I wrote that last week and never finished it so, now I'm 32 weeks and still no changes. Yeah! I'm waiting on a call back from MUSC today, hopefully to confirm a date for delivery! Things are moving fast these days.

I wanted to share some funny things Daylia (our 3year old) has said in the past couple of days. She has gotten to that stage where she never stops talking, never, and I love it. Milo and I laugh each day at the silly things she says.

This weekend she was telling my mom about going to a friends birthday party. My mom asked her how old her friend was turning. Daylia said, "Kyleigh will be 4. When I'm 4 I will get to wash my legs." My mom was a little confused by this response, but I knew immediatly where that comment came from and it made me laugh. A couple of weeks ago she saw me shaving my legs in the shower and she asked if she could do that too. I told her that she had to wait until she was bigger and she asked how big. So I told her that we would talk about it when she was 14. I guess she never heard the "teen" part of fourteen. I hope she forgets this by the time her birthday rolls around.

On Sunday, we were coming home from church and we were asking Daylia our usual questions about what she did and learned in her class that day. She told some stories about the games they played and the songs she sang. Then I asked her what the Bible story was about and this was her response... " There was this man, he wasn't sick and he didn't do anything... (very long pause, Milo and I just looked at each other and waited) But Jesus was walking down the road with him and Jesus told him that he has this wonderful place for him to live called, Africa." I'm the children's minister at our church so I get all the lesson plans ready for the volunteers to teach and I'm pretty certain that's not how the Bible story went! I'm sure Africa is a wonderful and amazing part of God's creation, but I'm thinking Jesus may have been talking about heaven.

I love our girls so much and I love every precious word that comes out of their mouth. I thank God everyday for giving me them.

I will start this blog by saying... "I really dislike (hate is a little to strong) blogging." So i feel extremely hypocritical in starting a blog. I find it arrogant, among other things... who am I that anyone would want to read about my life and I certainly don't think I have anything of immense value and insight to share with the world. However, as a mom going through what we are going though I am constantly online looking through stories of other parents in the same situation as we are. I am really appreciating being able to read other blogs and finding it useful, as well as, comforting.



While I feel this blog will serve a practical need for us to share information about Josiah with friends and family all over the nation (as well as dear friends in Croatia), I'm also hoping it meets an emotional need that I am feeling. Milo and I both expressed the other night how lonely we were both feeling in all this. He feeling lonely as a dad who could not do a thing about what's going on and me feeling lonely as a mom who doesn't feel like anyone can understand what it's like to feel little Josiah kick and swim all day in my belly and "know" what the future holds for him. That's an indescribable feeling. I hope that the typing of this blog allows me to just get my feelings out. I don't even really care if anyone listens!