Josiah is 1 month old today! It is hard to believe. In lots of ways it has gone by so fast in a few ways it's been a really long month. I'm praying this second month grants us more opportunities to hold and cuddle him, see his entire face again, and watch him eat from a bottle. That would be an amazing month.

There is a possibility that they may try to extubate Josiah tomorrow or Monday. That would be a great father's day gift for Milo. Please pray for Josiah to do well when they try again. It sure would make me feel a whole lot better to see him extubated. That would be an awesome sign of progress.

OK, So we have documented basicallly everything we could possibly think of during our experience here with Josiah. However, there is one story that we have yet to share with anyone. So this is the story we never told you.
The night before Josiah's Norwood procedure Erin and I had decided to stay with him late into the night. Dr Bradley had only given us a grim outlook on the upcoming surgery. We had to take a break from his bedside vigil for a while during the shift change, so we got some fast food and took it out to the courtyard to eat.

Neither one of us were hungry so we sat in stunned silence while our food got cold. We held each other and cried a bit, prayed and cried some more. Then I reached into my Arby's bag and pulled out a perfect heart. What?

Erin and I began laughing uncontrollably. We didn't know what to do with it, but promised each other to say nothing.

My jalepeno poppers had fused together to make a perfect heart the night before an intense heart surgery. Wierd?

Josiah has what my friend Dana refers to as the "can't get rights" today. He has thrown up a couple of time today and last night, which means they have to stop feeding him for a little while, try and figure out why he's thrown up and then restart feeds. His color isn't very good today and his last blood gas results weren't the greatest. They're going to do an ultrasound of his belly later to make sure there isn't any fluid in his abdomen. Josiah continues to drain a good deal of fluid from his chest cavity. His heart rates have been a more stable so far today, which is great. We continue to pray for healing over his little body and peace for us. I am so grateful for this little life.

Yesterday Josiah had to have 2 chest tubes put in. His chest x-rays have been looking hazy for the past couple of days and so they did an echo on him. The echo showed that there was some fluid around Josiah's lungs so they put the tubes in to drain it. The fluid that came out was milky in color, which the doctors said was chylous. It is a fluid that is basically fat. What that means is that there is a problem with Josiah's lymph in his lungs. It's really confusing and hard to explain but what this means for him is that he can't have my breast milk any longer. He will have to have a special formula that has no fat in it called Portegen. This will hopefully stop his lymph from pulling off this fatty fluid. He can't go back to breast milk for 6-8 weeks. This was really hard for me to hear. Pumping and giving Josiah my milk is just about the only thing I can do for him. I also have longed for the day when I can nurse him. Now Josiah will be about 3 months old before he can have breast milk again and at that point the chances are pretty slim that he'd be able to learn to nurse at that point. Milo and I talked about me continuing to pump or not, that's a big commitment, and I've decided to keep pumping. Even if Josiah can't nurse, breast milk has to be better for him then formula even if he can't get it for 2 more months. I can't even begin to imagine what 8 more weeks of pumping and freezing will look like. I think Milo and I are going to have to buy a deep freezer!

After draining about 150 cc (about 5 oz) of fluid from each side of Josiah's chest yesterday and today, the doctors have been able to make some progress on his vent. With the fluid gone, Josiah has been able to breath easier. There is not as much pressure on his lungs. That's good news! Please keep praying for out little guy. He's been a champ through all this.

Daylia was so good with Josiah today. He is nearly a month old and this is the 2nd time she has seen him. We still won't have Hazyl see him, but she isn't asking to like Daylia is...

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Still eating and growing, eating and growing, eating and growing. That's what Dr. Friedman has been telling us everyday for the past week. Josiah may actually be getting a little chub on him... if you look really hard.
This weekend has been a little frustrating because Josiah doesn't seem to be making any progress. His heart rhythms have been all over the place. Dr. Atz said this morning that he just likes to beat to his own drum, kind of a new age drum where steady rhythm doesn't matter. Although Josiah's blood pressure and oxygen sats stay normal he seems to become agitated more when he's in his funky rhythms. So far the doctors don't seem to know what's causing it or how to get it under control. That's hard to hear. Josiah also had to go up on his vent rate and support last night. His nurse said that he just seemed to be working really hard at breathing and that you shouldn't have to work on the vent. This morning his chest x-ray showed his lungs to be hazy again, meaning that they are wet or that more fluid is building up. That's the other thing that the doctors are having trouble figuring out. Josiah gets a chest x-ray every morning, one day his lungs will look great and the next they are hazy again. Also, because he was working hard to breath and his color seemed to become gray, his nurse said that this could be a sign of infection . He also had some drainage from the site of his RA lines. They sent cultures off to the lab. It takes 72 hours for final results on that, but in the meantime they started Josiah on antibiotics again.

I hate writing all these things because it makes it sound worse than it is. Josiah is stable and for that we are extremely grateful. It's just going to take some time to make a full recovery. We'll stay here for as long as we need to and be grateful that we have such an amazing place for him to be.

Josiah's goals for the next few days is to eat and grow, eat and grow, eat and grow. That's what all the nurses and doctors keep telling us. He's up to full feeds (22 cc's an hour). However, he was spitting up earlier today so they had to put the tube further down past his tummy and into his small intestine. They are planning to extabate him again on Sunday. He really did well on Tuesday making it 20 hours off the vent, but the doctors just weren't comfortable leaving him off. They said that he got an A for effort but a B- for his stats averaging out to a B+. Only A students are allowed in the PCICU though. Josiah's heart rhythms have been pretty irregular the past couple of days. The hard part is that they can't really figure him out because the irregular rhythms are so strange. It's not one type of irregular rhythm but a combination of several. He goes into SVT, PACs, and atrial flutter. Josiah really likes to keep everybody on their toes!

We are meeting lots of families here that are all going through very tough times with their children. One particular family that we have gotten to know is the Moore family. Their daughter Addie has HLHS as well. She's 6 months old and was here last week for her second surgery. They went home yesterday which was awesome to see, but we have heard that Addie may have some kind of infection and they are currently en route back to MUSC by air. Addie has had a really tough time with infections and so everyone is very concerned. Those of you who have committed to praying for Josiah, as you pray for him please pray for little Addie as well. Thank you again for all your encouraging words, texts, fb's, and phone calls. We appreciate it so much.