So this is a picture of Josiah last night after the Norwood procedure. I admit, it is not a photo we will be putting in his baby book. However, it is the reality of what he went through yesterday. The doctors wouldn't even give us the odds of what we were up against, because of his list of complications, there was little or no data to compare him to. Dr Bradley even suggested that if we wanted to wait another day becuase weren't emotionally prepared to potentially lose a child, we could put it off.

But God is good! We recieved updates throughout the day, which we passed on to hundred of people who committed to pray for his little body to survive the procedure. He is doing very well!

The orange area on his chest in the picture is actually a protective cover over hisopen chest. We can look into the 1inch gap in his chest and see his little heart beating miraculously away. This is left open for about 24 hrs to allow the swelling to subside before closing him back up.
Thanks for prayin

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We were told today that Dr. Bradley has decided to go ahead with the hybrid surgery for Tuesday. Although, when he came to speak with us about that decision he asked if we would be around tomorrow night to go over consent forms and things like that and said that we wanted to wait until evening in case something changed. As we have been experiencing here in the PCICU things always seem to change. This one looks pretty set though.

Obviously, this will be a big day for Josiah. The hybrid surgery is a relatively new procedure for HLHS babies, could be the wave of the future. Everything I've read about the procedure seems to be really positive and encouraging. The thing that concerns me is that not only is it a new procedure it is even more rare that it is done in HLHS babies who have a stint in their atrium. I really wish Josiah would cool it on the uniqueness. I'd rather he wait until he was a teenager to explore his individuality.

They sent some cultures off to the lab yesterday because they were concerned about the possibility of infection. The early report is that there is some kind of infection in his lungs but they are not sure what yet. They started him on some antibiotics and we'll have to wait to see the final results to determine the next course of action.

Our little man looks so good it's unbelievable how sick he really is. You would never know it. We love him so much and can't wait for him to get better so that we can start holding him and loving on him. Poor little boy will never be let go once we get our hands on him. There's nothing wrong with a mama's boy, is there?

Here is our first family picture! Milo brought in a picture of the girls to put up on Josiah's bed. I didn't think much of it until I saw the picture up. It made me so happy. It was the first time I have ever seen all 3 of my children together. You don't know how special that is to me to be able to look at Josiah and see our girls too. I almost feel like I have two families right now. Milo, I and Josiah who live at the hospital and then our second family, Milo, I, Daylia and Hazyl who reside at the condo. Right now those two families don't mix. What a day that will be when we can be one big family of 5.

Yesterday, Daylia got to see her brother for the first time. She has been asking about him so much and has seemed to do well when we showed her pictures of him. She asks tons of questions as always. So we hoped she could handle seeing him. The child life specialist that we spoke to about her coming in to see him was all for it. Although, when we told the nurse we were going to bring her in she didn't seem to excited about it. We brought her in anyway but just for a short time. She did really well and was so excited to see him. She asked about some of his tubes but did not seem afraid at all. The child life specialist told us to make sure to read her cues and not force her to get any closer than she wanted to be. I was standing over him and put my hand on his head. As soon as I did that Daylia asked if she could touch him too, so we let her. She did great! She said that he looked like her because he had brown hair and brown eyes just like her. We only let her stay for about 5 minutes. When we came back in the nurse who wasn't so excited about the idea said she was so impressed by how well Daylia did with seeing Josiah.

Today has been a difficult day for us. Mostly, because we were unprepared to deal with anything today. We found out yesterday that the HLHS Hybrid (surgery #1 of three) surgery scheduled for this afternoon had been cancelled. This is because Josiah has shown strong improvement over the last 8 days, and the doctors want to give him more time to work through some of his problems on his own. The surgery has been scheduled tentatively until Tuesday, on the long shot that he might improve enough over the weekend to go ahead with the Norwood procedure.

The Hybrid surgery by the way, is a relatively new procedure that uses both a heart catheter, and an open chest (not open heart) surgery to repair Josiah's little heart. They put bands on the pulmonary arteries, to restrict blood flow from the heart to the lungs, because too much blood is going there right now. Also, using the catheter they put in a stint in his patent ductus arteriosus (PDA) to keep the duct open that is now kept open by a drug dripped into his IV all the time. The benefit of this surgery is that Josiah will not be put on a heart bypass machine. A heart bypass machine puts extra stress on the kidneys, and Josiah's kidney function is currently poor. This makes him a good candidate for the Hybrid. The negative of this surgery is that it adds some additional elements to the Glenn surgery. (surgery #2 of three) But, this is not really a concern for us right now. Our key is to get him healthy enough to go home and grow for a while.

Today's frustrations are related to Josiah's very high irregular heart rate. It was over 212 bpm for what seemed like a very long time. The nurses started by trying to surprise him out of it, by using ice packs on him, among other methods. It worked a few times, but ultimately he could not shake it off. The next step was to "pace" him out of it, using a pacemaker from the 1970's, which is attached to an electrode that is put down his esophagus and placed in close proximity to his heart on the inside. It sends impulses to the heart at 300 bpm and higher for just a few seconds, which confuses the heart and "resets" it back into a regular cadence. This worked for Josiah a couple days back, but today they went all the way up to 700 bpm, and he would not drop out of the SVT (supra ventricular tachycardia) fast heart rate. So instead, he was put on a different medication that drips into the IV line, but takes a full hour to empty into his system. (His little body would not be able to handle the medication any faster.) Josiah waited a full 58 minutes before responding to the medication, all the while his heart looked like it would beat out of his chest. This was a tense hour for us!

Turns out, throughout all of this heart pounding, Josiah's blood pressure remained constant, and he in all other facets was still in control of his own body. Somehow, this is completely unrelated to how soon or late we get in to do his next procedure. It may even have little to do with Josiah's heart condition. Why can't we just have a "normal" day in the PCICU?

It means the world to us to have friends who are around during the hard times. Dana and Janelle made the trip down from Greenville today and it made Erin so happy. She was like a different person at the end of the day. Laughter works like a good medicine. This picture is taken in the reflection of the security camera that we look into each day to get approval from a nurse inside the PCICU to come in and visit Josiah

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what Daylia thinks about shedding tears when you don't like your situation