Here are some pictures from last week when Josiah was extubated and we were able to hold him. This was the first night holding him. It was amazing. So many thanks to Steve, Tagg's Dad, and the nurses for holding a "photo shoot" with us in the PCICU! Shhh don't tell anybody what happens in the middle of the night in the PCICU!
Today marks 8 weeks since Josiah was born and 2 full months since we relocated to Charleston. This has been kind of a tough day because today marks the last day of the "timeline" we were given way back when. We were told to expect 4-8 weeks in the hospital. In case Dr. Lucas our pediatric cardiologist back home reads this, which I highly doubt he has the time to do, I'm not mad at you! In fact I am convinced that had Dr. Lucas not done the amazing job he did with our prenatal diagnosis Josiah would not have had the fighting chance he has had to overcome this. What we have learned since being here is that every case is so different and there is no way to predict how things will go. When you hear 4-8 weeks you think, best case 4 weeks, worst case 8 weeks. When 8 weeks comes and goes and you still don't have a clue when you'll go home it kind of makes for a bad day.
However, on a more upbeat note. My dad came back today. It's great to see him and have him back with us. Hopefully we'll come up with a housing arrangement that can fit all of us and he can stay with us.
Also, I had a visit today from a friend back home. It was a perfect day for him to come. I know that his family has been praying for Josiah fervently. I don't think I've shared this yet but this guy's wife called me months ago telling me that she had had a very vivid dream which included Milo holding his son. She was awaken from this dream with the incredible sense that she needed to pray for this little boy and for our family. She woke her husband up and they began praying for us right then. She had this dream before we even knew we were having a boy and that he had a heart defect. I have been holding onto that for a while now, allowing it to bring me hope in this situation. Which brings me back to Jeremiah 1:5, "Before I formed you in the womb I knew you, before you were born I set you apart." It's amazing to think that before we even knew that Josiah was a boy and had HLHS He was already putting it on peoples heart to pray for him. So to see our friend today and have him pray over Josiah was a huge encouragement.
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more good news: the van is salvageable. we are going to get away with only having to replace alternator. water poured vigorouslyGood news: Josiah's chemical burn is mostly superficial. It wil look worse before it gets better but it should heal in 12-14daysHousing is an issue again. We need a new place starting Monday. Anyone got any charleston hook-ups?jim wallis: what you see when you wake up in the morning shapes your perpective and outlook on life... I am learning how true that state ...just dropped jeremy off at the airport. hate to see him go, but so glad he could be here for a couple daysJosiah looks much better today. His meds went into an artery yesterday, giving him a sort of internal chemical burn. better 2dayjames island county water park while grandma is at the hospital. then take jeremy back to the airport. then work on ridgeview stuff from ...i absolutely love every time amy and steve smith remind us to keep it positive. God is in controlJosiah is fast asleep thanks to his versed (knock out medicine). He had a rough day. He now has a new PICC line and 4 new IVsdoing night night with the girls before heading over to see Josiah in our private room at the hospitaleating bbq at jim n nicks bbq on king streetJosiah is doing better. kinda scary day, hard to see tons of doctors around his bed again, but the reality is he is more stablejosiah update: he has returned. we should get to see him in about 15 min...Josiah still has not returned from the cath lab where he is getting a PICC line put in. Wehave been told the line has been placedPICC Line #2 http://is.gd/1xu52Water flows out of the Van's tailpipe: video http://is.gd/1xsZMWater flows out of the Van's tailpipe: video http://is.gd/1xs0BJosiah has not been able to keep a steady IV access. He is being taken to the cath lab for a PICC line in about 5 minwaiting for the towing service to come and take our van to the mechanicTake some steps foward then take some back http://is.gd/1xlYiwe are back at musc, and the girls are real excited about mommy coming out to see themheaded to the airport to pick up jeremy bohalltried to fix the van with adam tonight... no luck. have to get it towed to a mechanic tomorrowHe is Resting comfortably. Had morphine hr ago. No private room yet!we didn't get moved before shift change. hopefully the night crew will also want us in the private roomtoo many people at church to get back to the aprtment... that's different...Josiah has picked up an infection in his blood stream. this is why he wasn't able to stay off the vent. pray as he fights it offwe might have the option to get a private room... should we take it?Josiah just finished a blood tranfusion... thanks again ridgeview for donating blood weeks and weeks agostoked about my friend Jeremy coming to Charleston tomorrow from CROATIA to see Josiah. Now that is a good friend!Josiah is looking better today now that he is on the vent again. He had a rough 24hrs. he seems content to let the machine breathdaylia just recited back to me the story of Jonah and the big fish... great kids program at sancturychurch todayhad an awesome time of worship this morning at sancuary church charleston... they meet in a school too! felt like homeJosih had to be re-intubated this morning. He had a good run though... 1.5 weeks breathing on his own!Josiah's only chest tube remaining came out at some poit today. They are looking at xrays now to see if it needs to be replacedironically, the pediatric ICU has no bandaids or a simple 1st aid kit...Josiah just loves all of his blog readers... he wants to give a shout out! http://is.gd/1v6Zznurses are sticking Josiah all over to get a blood sample to get e gas. This is the bad side of not having a PICC lineBack at Josiahs side. He is still looking kinda gray. We hope he isnt re-intubated today... It is a possibilityRidgeview Church New York Mission Trip 2009 Video http://is.gd/1u2IzOur God is Great! http://is.gd/1tInQback at the aprtment with the girls... we are heading over to the hospitali am certain that there is only one car in charleston parked farther away from the beach than ustaking our girls to the beach while grandma sits with Josiah...she got the better end of the deallong long movie.... i guess it was worth it. now i just wish i was asleepforgot to mention the monie title... public enemy... we were 15 min late, i hope we didn't miss the important stuffgoing to the 11:30 movies with john mark and rahel... you are only young once... young with grandma at home with the kids that is...Just daddy and Josiah for a few minutes. And i an loving it!spending the evening with some friends around josiah's bedplaying on the playground with the girls at hazel parkstill unsure whether Steve is a Specialized man or a Giant manMommy is holding our beautiful boy again... it never gets old!Josiah's chest xray this morning was the best of his entire life. It seems he may be finally starting to dry out the fluidinitially i didn't like charleston. i didn't see what all the fuss was about. but it is growing on me!hoping to get back in to see Josiah soon... this is the downside of being at the hospital during the daythe van is still dead... no water in the oil pan as far as I can tell, maybe its the starter... I don't know.. got any ideas?Josiah working harder to breath today... no real reason for it, but we hope he gets betterrescue complete. we hooked on the van with a towrope and pulled it over to G-lot. Hope it dries out tomorrow!going out to retrieve our swamped minivan