We've had a tough couple of days with setbacks. Three days ago Josiah was looking great and had made the most progress that he's made in months. We were at the lowest settings on the vent, doing CPAP trials and started full strength breast milk. It has been more than frustrating to watch him go backwards the past couple of days.

This morning Mindy, our nurse, noticed Josiah's steri strips on his chest incision were wet. So she had the MD come in and take a look. He took off the steri strips and saw that Josiah's incision was open. It has not healed correctly and was leaking fluid out of it. We are not 100% sure why this happened yet. It could be that an infection has grown in there or that it hasn't healed due to poor nutrition (from not being able to have fat). So Dr. Bradley took Josiah to the OR to open up his chest and clean out the wound. He took cultures of the fluid and tissue inside his chest to determine if there is an infection. We'll know in a couple of days or so. In the mean time they put Josiah on 3 different antibotics to cover him in case of infection. Dr. Bradley also put something called a wound vac on Josiah's chest to pull out any excess fluid and to stimulate blood flow to the tissue. Blood flow will help the wound heal better. The wound vac will have to stay on his chest for a couple of weeks.

So we've got things put together for the centrifuge! There is this ministry here in Charleston, called CrossBridge Family Ministries, that has been helping us since we got here. They have been absolutely wonderful. They've helped us finically, with housing, with food. They help lots of families in our similar situation. Melissa, the woman who has been helping us, has a medical supplier that is going to give us the centrifuge at a discounted rate. So it costs $1170. You can make tax deductible donations through their ministry by going to this link.

Josiah did great with his CPAP trial. His gas looked great! This is a huge step in the right direction. It has been 2 months since he had a CPAP trial and he did so miserably then that we haven't done it since. Josiah's O2 sats have been in the 80's all day. That's higher than I've ever seen them. I'm so excited to be moving in this direction.

There have been some big changes today for Josiah. After I was told yesterday that we were only going to make one vent change a day, making it another 10 days before we would be a point where we could CPAP, we are now CPAPing today! CPAP trials are when they shut off the rate on the ventilator making him initiate every breath on his own. It is a way for them to test Josiah and see how close he is to being ready to extubate. They will test him for a while, but Josiah has not been at this point in 2 months. That's amazing!

Last night when I was putting Daylia to bed we prayed together. This was her prayer, "Dear God, I like the way you made Josiah. Help him to get stronger so that we can take him home with us, back to our house in America."

I wanted to introduce you to the Smiths- Steve, Amy, Emery and Taggert. Here in the PCICU they go by the "Taggerts." This may just seem like a simple family picture to everyone else, but to me and the rest of the PCICU this moment was absolutely amazing. The Taggerts have been here almost 6 weeks longer than us, totaling somewhere around 22 weeks, and today they brought Tagg out of his room for the first time. You might wonder what the significance of that is, but it means that Tagg is free from tubes, oxygen and IV drips for the first time. Amy was able to pick him up and carry him out to the door. To see her holding Tagg like this was incredible. I don't mean to tell anyone how to feel but please allow this photo to remind you to never take your children and the many little things in life for granted. How beautiful it was to see this amazing mom holding her amazingly beautiful little boy in a way that she hasn't been able to in 22 weeks. I can't help but praise God for another miracle. Please continue to pray with our family for the Smiths. They are getting close to being able to go home with Tagg and we are praying for no more bumps in the road. His last hurdle is feeding. Please pray that Tagg is able to accomplish his feeding goals this week.

Josiah is recovering well from surgery. He looks great today and has been awake a little more than yesterday. We are working are way back to pre-surgery ventilator settings. Not there yet but making progress. We are now counting Josiah's stability through surgery and post-surgery a success, but we will continue to wait and see whether the repair made will make a big enough difference in Josiah's lungs. Still praying for Josiah's lungs to get strong enough to handle being of the ventilator. We are patiently waiting for the day we can see our sweet little boy's cheek's and here is beautiful cry.

Milo's twitter updates have gotten all backed up today for some reason. Not a day for twitter to fail us. So if you see twitter updates come in that say Josiah is still in surgery he is not. They are coming in late for some reason.

So the real deal is that Josiah is currently in the PCICU and stable. We got to go back and see him for a couple minutes and now we wait for his nurse to finish up getting him all settled. We will be able to go sit with him again in about 30 mins.

Surgery is over and Josiah is back in the PCICU. We just finished speaking with Dr. Bradley. He said that Josiah did well through the surgery and was stable through out. He came of the heart-lung bypass machine well, but had some trouble ventilating his lungs. They become stiff after not working for the hours of the surgery. Dr. Bradley repaired his left pulmonary artery, carved out the inside wall of his left atrium attempting to make it bigger and adjusted his shunt a bit so that it might last Josiah a little longer than normal.

All in all, the surgery was successful from the standpoint of Josiah remaining stable and Dr. Bradley doing what he wanted to do. We now have to wait and find out in the weeks to come if the surgery is going to help Josiah's lungs enough to get off the ventilator.

Please continue to pray for Josiah as these next 24 hours are critical in his recovery and as we wait and see once again. Thank you so much for all your prayers through out the day. We are truly blessed by the immense support we have. Praise and glory to God for seeing us through another major day and protecting our precious gift.

We are back from the wedding weekend. We had a great time but certainly wished we could have been there as a complete family. Josiah was well taken care of while we were gone by his wonderful nurses and extraordinary grandparents. Apparently Mindy got Josiah to smile at her. I'm not sure if I believe her.

So the results of Josiah's heart cath showed that he is in need of another open heart surgery and not the scheduled 2nd stage surgery for HLHS (the Glen). He is not a candidate for that surgery at this time because of his lungs. What they learned from the cath is that his right lung is getting beat up because it is having to do all the work. The blood that leaves the right lung which should be fully oxygenated at 100% (even for HLHS babies) because that is when it is the most saturated, is only 84%. This shows the MD's that his lung is not functioning well enough. The artery that feeds into the left lung is very tiny (2mm, his right artery is 5mm) and so there is very little to no blood flow to the left lung, thus overwhelming the right lung. So Dr. Bradley needs to repair the left pulmonary artery in hopes that more blood will flow to the left lung and Josiah can begin using his left lung.

The complication is this. Josiah's left pulmonary artery (LPA) is not only narrowed in the section leaving the heart but it is narrowed all the way into the lungs where it branches out and feeds the different lobes of the lung. Dr. Bradley can only fix the portion near the heart. Once it goes into the lung Dr. Bradley cannot do anything with it. The hope is that if we fix the portion closest to the heart it will allow more blood flow and will allow the parts we can't repair the ability to grow. The MD's said there is a saying in Cardiology... "more flow, more grow." We are praying for growth. The deal is this, doing nothing will only hurt Josiah, doing something is very risky and may or may not help. So we do something and pray for the best. If it doesn't work we have a whole new set of questions to start asking. We will save those for another day and look toward tomorrow instead. One day at a time.

Surgery is scheduled for tomorrow at 7am. It will be open heart. Josiah will be on the heart lung bypass machine while his heat is stopped. It should be a 5-6hour surgery. It's really much harder emotionally this time because we know a whole lot more. The saying that ignorance is bliss just might be true in this case. We know just how risky this is, we know the complications that could arise, we know just how long recovery could take, we know we won't be able to hold our son again for a long time.

So here is the pray list...

-for Dr. Bradley (our surgeon) to make the best decisions about what to do once in Josiah's heart

-that Josiah will tolerate bypass and his kidney's especially would be protected

-that this surgery will allow there to be more blood flow to Josiah's left lung

-that surgery doesn't stir up all the lymphatic drainage Josiah struggled with last time

-that this would ultimately work and Josiah will be able to breath on his own

Thank you so much for your prayers.

I just love this picture. This is my favorite position to see Josiah in. I love to see his cute little tush up in the air. He sleeps so peacfully on his belly. By the way it's okay for babies to do this in the ICU because they are hooked up to so many monitors!

So the reason for the post today is to ask for prayer for our little guy and all his doctors today. He was scheduled to go to the cath lab next Friday but yesterday they bumped it up to today! He will be going to the cath lab on a diagnostic, data gathering "mission" ( I don't think they are sending him to space or anything). He has to have this done before his next surgery to determine if he is a canidate for the next stage. In the cath lab they will get access to his heart through a main artery or vein. They usually like to do this through the leg but they will most likely not be able to do this because he has had a number of pokes to his legs that his main arteries and veins are no longer there. That means that they will try to gain access to his heart through his neck. Basically they find a vessel that is large enough and slide a catheter (a plastic tube) into the vessel and feed it through to the heart. They then can use this caterter to put different instruments through....

Okay, josiah is awake now and I'm going to spend time with him. I'll finsh this later. Please just pray for him and the doctors this afternoon. He is suppose to go around 2:00pm and be done around 6:00pm. Thanks for your prayers

THis is Dad's 1st time seeing Josiah in 4 days, so it really good that he is awake. Doesn't he look like the sweetest little guy in the whole world?

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I got more great new about Josiah's weight last night. We weighed him and he gained a whole .14kgs in 4 days. For all of us Americans who don't use the metric system that is 5oz in just 4 days. He is now 4.0kgs or 8lbs 13oz. For those of you who have never had a child in the hospital for months that is a HUGE HUGE deal! I can't even begin to tell you how excited over that I am. We have been on the feed and grow plan for over 2.5 months and in that that time Josiah only gained .4kgs. In the last week Josiah has gained .24kgs! The only thing that has changed in the last two weeks is him getting the skim breast milk. So I have to attribute his weight gain to that! This skimming breast milk thing is very time consuming for Staci (one of our nurses) but it is paying off big for Josiah. I can't thank her enough for doing this for my baby. One of the biggest reasons that babies don't make it out of here is because they can't gain weight and therefore can't stay strong enough to fight infection or get off the ventilator. So, Josiah gaining weight is a matter of saving his precious little life. Any weight gain is huge! Thank you God for putting people in our path that have made such a huge difference in Josiah's life.

Here is the story of one 80cc bottle of milk.

First I am pumped into this tiny bottle from the breast. Then I am stuck with a label that says Wilson, Baby Erin and dated. Some nice lady at the desk in the PCICU throws me in the freezer. I sit there chilling for about a week when this man comes in with a big blue cooler, takes me and 75 of my friends throws me in the cooler and covers me with ice. We then get put in the passenger seat of this awful gold colored x-terra because there is no room in the back because for some reason this man, who got me out of the freezer, has at least two bikes and two beautiful girls in the back of the truck. I guess I'm pretty privileged though, because I get to ride in the front. The trip seems pretty long. I think like 3 1/2 hours or so depending on traffic. When my friends and I get to Greenville we're tossed into another freezer in someones garage. The man who brought me there seems pretty excited to see the people who own the garage so they must be pretty good friends. This freezer is really cold and is full of many old friends! About a 3 days later the freezer opens again, but this time the man digs past me all the way to the bottom and picks out some of my oldest friends. I wonder where he takes them. Every week the freezer opens first the man brings new friends then a couple of days later he digs and takes old friends. I am now sitting on the bottom of the freezer and I sit and wait to do my job. Finally, the man comes back and takes me out, puts me back in the cooler, back in the passenger seat and we drive all the way back to Charleston. Again I get put into a freezer. This time I wait for a few days when a wonderful woman puts me in a refrigerator and lets me thaw for a day. Then all the fun starts. She takes me to a lab pours me in a vile, places me in a centrifuge and spins me until I'm very dizzy. I then get put on ice and transported back to the PCICU. I'm then given over to my mom (I guess that's what I would call her, she's the one who made me). Mom uses a syringe and separates me into two parts, skim milk and fat. My skim milk gets put into the fridge and my fat gets put back in the freezer. Finally I get to be used! A nurse pours me into a bag with a bunch of other supplements and vitamins. From there I get to drip, drip, drip, into the sweet babies tummy I was created for! What a journey I've been on but what a great purpose I serve!

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Did I ever think we would be here for 100 days? No way! No way! I am so grateful that we are still here? Absolutely, because the alternative is certainly not where we would want to be. So what's been going on with Josiah this week? Good news and bad news.

I'll start with the bad news. Josiah has had a pretty rough week. Tuesday he became very sick as I posted earlier this week. We had some cultures drawn and what grew back was pneumonia. So unfortunately Josiah lungs have taken another hit with this infection. We are treating it and Josiah seems to be feeling better. He is still set at very high ventilator settings. The hope is that he will recover from this and be able to go back to the previous settings soon.

The good news is Josiah had a great day today. He and I had so much fun today. He was alert and awake for a good portion of the afternoon. While he was awake he was so content. We got to do some of his stretching and Josiah actually feels like he is making some progress. I don't even think I can explain the little things that we are working on because I don't think I would have ever known that it was possible for a baby not to do some of the things that seem so natural. It's amazing the things you take for granted. One of the biggest things we've been working on is getting him to hold his head straight. He always has it turned towards the right and he is very uncomfortable with it in what we call a neutral position because his neck muscles are so tight. I talked with Josiah's occupational therapist today and asked her how often we should do his stretches and she laughed. She said that we should do his stretches as often as we could but that a normal baby at home would be making these movements about 600 times a day! Wow!

I also got to hold Josiah for about 2 hours today and he was awake for the majority of the time. It was so amazing! I love him so much! We have been so blessed these past 100 days!

First of all I can't believe the response I've received already about helping out with the centrifuge. Thank you so much for getting on board with this already! I spoke with an organization down here who has helped us out while we have been here and helps other families in our situation with housing, food, tons of things. They are more than willing to let us go through their non-profit organization to donate funds, which I think will be great. I also spoke with the nurse manager of the PCICU today and asked her about getting a centrifuge. She told me that she is in the process of getting all the doctors and the nurse who has been doing this for Josiah and the other baby together in 2 weeks and evaluating how things are going with this process. They need to make sure that this is a policy that they want to continue with all babies who need a fat free diet. They need to develop a protocol for this in the unit so that there ends up being consistency. Mine and Staci's goal is that they see the benefit and decide to keep going with it for other babies. So all that said, we need to wait and see if the MD's are going to decide to make skimming breast milk a protocol before they go ahead and order a centrifuge. So again I'll keep you posted! Thanks so much!