Josiah has had an uneventful day. He's been very content. He's back down on the vent settings he was before he was extubated and doing CPAP trials again. The MD's are trying to feed Josiah's belly again today. He has always been fed TP, which means a tube down his nose running through his belly and into his small intestine. So his milk by-passes his belly altogether. They have done this because so many heart babies don't tolerate feeds in their belly and the more important things for Josiah was to keep all his calories and grow. By putting the tube all the way down into his small intestine he rarely throws up and so doesn't waste his calories. But now is the time to try and feed his belly. So we are starting very slowly. We expect a transition time where he will be uncomfortable and throw up often. So pray for a quick transition time. Once Josiah is able to tolerate his feeds in his belly he will have a G-tube put in. This is a surgical procedure where a tube is put directly into his belly with a port sticking out of his side so he can be feed by a feeding pump that way. This will eliminate the need for the tube going in through his nose down to his belly. I think it is safe to say that my hopes of breast feeding this precious baby are gone. I held out hope for a long time that we might be able to accomplish this but I think I now have a much greater understanding of what it means for Josiah to be a single ventricle baby. It means he just will not have then energy for things that a normal 2 ventricle baby does. Milo and I have always thought that meant that Josiah wouldn't be a football player and he won't be, but right now sucking, swallowing, and breathing is a like the Super Bowl and Josiah just can't play. So we make it easier for Josiah with a G-tube, there is no energy exerted when feeding through a G-tube except digestion, and Josiah gets to stay focused on growing and healing.

This one is very hard to write. It has been a very emotional day. I called the PCICU at 3:45am to check on Josiah and he was doing great. His nurse had just drawn a blood gas and hadn't gotten the results back yet but said he was doing great. I called back at 4:45am to hear the results of that gas and the nurse who answered said, "Has Ryan (the fellow on in the unit overnight) talked with you." I knew that wasn't a good sign. When I said no, she explained a little of what was going on and then gave the phone to Ryan. He explained that at about 4am Josiah got irritated and began having a meltdown. He was called in to help and at that point Josiah's heart rate had dropped to 60 beats per minute (which is when the start chest compressions) and he was blue. They manually ventilated him for a bit and got his heart rate back up. Ryan stuck a catheter down Josiah's nose and was able to suction his airway out. He pulled out a lot of mucus. The got a blood gas at that point and it came back really bad. Showing that Josiah's body was under a lot of stress. At the time that I was speaking with him he said that Josiah had calmed and looked better. They even did another blood gas and it was heading in the right direction so Ryan thought that Josiah had recovered from this episode. At 6:30am we got another call from Ryan saying that Josiah was doing worse and it looked like they were going to have to put the breathing tube back in. We came over to the hospital in hopes that Josiah would make a turn around but by the time we got there they were just finishing up putting the breathing tube back in. Needless to say it has been an emotional day. We have cried a lot. I was really hoping for him to do better this time. Once again the awful part about being hopeful is when the thing your hoping for doesn't happen as you want. Josiah's life is a miracle no matter what and we continue to hope in the final outcome. The journey to getting there may not always be what we want or expect but the prize of Josiah is more than worth it.

A few pictures of this beautiful baby! I just love his precious lips!

-A heart that holds on

Josiah has been doing well of the ventilator so far today. He usually does great for the first 24 hours so we just wait and try not to be too anxious. We have not been able to be in there with him much today because there is a lot going on and we've been kicked out of the unit. I haven't got to hold him yet, but I have big plans for later!

After speaking with the doctors this morning we are going to plan to extubate Josiah early tomorrow. We'll give him one more day to relax. We've finally figured out his pain meds so that he is much more comfortable. He hasn't had any major meltdowns in 24 hours. So we'll give him another day to show us he is over the meltdowns. They'll give him some steroids tonight that help with the swelling of his trachea after they remove the breathing tube and then remove the tube in the morning.

We are celebrating Josiah being 21 weeks today and 21 weeks of great care here in the PCICU. So here was my thought. What do you do on your 21st birthday? Drink beer. Well, you can't drink beer in the PCICU. So how about Root Beer, but Root beer is too boring, so Root Beer floats for everyone. Milo and I brought all the necessary things for root beer floats for the staff today, just as a small way to say "Thank you."

Wow! I found this on another heart mom's blog. It's a documentary chronicling the story of three families with heart babies and the team that that serves them at Hope Children's Hospital in Illinois. I can't wait until we might actually be able to get to watch the entire documentary. Just from viewing the trailer I can tell I would cry through the entire thing. It's amazing, it's a different hospital, different doctors, different nurses but it's exactly the same, same equipment, same sounds, same feelings. Check out the trailer here.

Josiah is doing well tonight. He just got done with a 2.5 hour CPAP trial. He slept right through the whole thing with his mouth hanging wide open. When ever anyone sees him they ask if he always sleeps like that and I always answer yes, just like his mommy. The plan is to try to extubate him again either Wednesday or Thursday. This is scheduled to be his last attempt before deciding on the trach. Please pray that "all the stars align" for this event, so that Josiah gets the best shot at breathing on his own. It's difficult in here for that to happen. In my opinion he needs to be free from infection, keeping his feeds down, no fever, pain medications under control, wound vac off, the right staff on for several days. Good thing I'm not in control of all this. So please just pray for God's perfect timing in this. We obviously don't want Josiah to get a trach if he'll be strong enough to breath on his own in a couple of weeks, but we do want him to get a trach if he's not going to be able to get off the vent soon. How do we know when Josiah's time will be? We don't. So please pray that we have a peace about the trach one way or another.

Milo is gone for an entire week this time. He left on Wednesday morning and won't be back until late Tuesday night. I still remember the first time Milo went somewhere without me once we were married. He was still in the Marine Corps and had a few days off. He decided that he and two friends were going to go on a 3 day trip. I was teaching at the time so I couldn't go. I was very okay with the idea but hated every moment while he was gone. He even admitted to not having as much fun as he was hoping to have. When he came back we both decided that life was just better together and that as much as possible we would try not be apart from each other. I don't think Milo has ever done another "boys weekend," he has to much fun as a youth pastor these days, with weekend retreats and camps! I've done one "girls weekend" in the almost eight years we've been married, it was fun! Before we had kids I don't think we were really ever apart. Now that we have children we end up being separated a little more because I just can't take the girls along on Ski retreats or to summer camp. But these past 4 months has taken it to a whole new level. I spend half the week with Milo and half the week without him. While I never hate the reason he is gone, we are so grateful for the amount of time he gets to be with us in Charleston, it just doesn't feel right. I miss him. He's my partner in all this. He's who I can be weak with. I just don't feel myself without him by my side. I love him.

We are thanking God tonight for 20 weeks with our amazing little boy! We know that these 20 weeks have been one continuous miracle in so many ways. I'm so grateful for our sweet boy. We were going to throw a bash for him in the PCICU today, but Milo had to leave this morning and I didn't want to have a party without him. It works out great anyway because next week Josiah will be 21 weeks old and it turns out that 21 is Daylia's favorite number (just ask her), so it will be fun to celebrate the number 21. Seriously though, Daylia is obsessed with the number 21. She talks about the number 21, being 21, counting to 21, measuring 21. My personal favorite happened last week when she asked me how fun something was and when I said it was going to be really fun, she replied with, "Is it going to be like 21 fun!" Now that's fun! So all our friends here in the PCICU get ready for next Wednesday when we celebrate Josiah being 21. It'll be like 21 fun!

We had another discussion with the MD's yesterday which included a real conversation about the potential of Josiah needing a tracheostomy. That thought has been looming in the backs of our minds for a while now but yesterday was the first we've actually discussed it with the doctors. It appears that is the direction we are heading with this latest failed attempt at extubation. A tracheostomy is where they surgical insert a tube through Josiah's neck and into his trachea (wind pipe). This would remove the need for the tube in his mouth and throat. Basically it is a way for us to be able to bring Josiah home on the ventilator. There is a ton that goes into all this and at this point I don't have all my questions answered. There is good and bad that go with a tracheostomy. So we are in the process of finding out information and discerning our feelings through all this. I can't at this point even figure out my feelings for myself. At one point I am hopeful at the possibility of bringing Josiah home and then a moment later I am overwhelmed by the possibility of never hearing my sweet baby cry.

Josiah's breathing tube went back in this morning at about 9:00am. He apparently got incredibly mad, decided to quit breathing and turned blue. The doctors bagged him a couple of times but he never quite came out of it. Then his heart rate dropped to 48 beats per minute (he normal sits at 130 beats per minute). Which meant they had to do chest compressions briefly. They then had to quickly re-intubate Josiah. When I got the phone call that all this was going on I obviously was upset but kind of felt like it was an isolated incidence. After talking with the MD for awhile, he said that he was already thinking that Josiah may have need to be re-intubated today at some point. Josiah's CO2 levels climbed throughout the night and he had to go up on the amount of support coming from the vapo-therm. This was more disappointing to me because it showed that Josiah's lungs are still not healthy enough for him to breath on his own.

So we don't know anything yet. They're a little slow getting going this morning. I say that because they haven't rounded on Josiah yet, apparently they are busy taking care of other children! Dr. Bradley surgery ran long yesterday and he didn't have the time to change Josiah's wound vac and possibly close his chest. So that needs to happen before they can try to take Josiah's breathing tube out. The thing we are concerned about is if they should really do both in one day. It takes a lot of drugs to knock Josiah out enough to change his wound vac. Our concern is Josiah then not being to sedated that he can't breath on his own enough when they take the breathing tube out. Most likely if they decide to do both the wound vac will get changed soon and they will wait to extubate until later this afternoon. We'll see!

I decided to go home with Milo and the girls this weekend. This is only the 2nd time I've been home in 4 months. It's weird how you feel like a stranger in your own home. It's just not the same. Even though Josiah has never been here and we never set anything up for him before we left. It's just weird. Something is missing. Things look different, smell different. I opened the completely wrong closet looking for a towel this morning. We've lived in this house for 5 years now. You'd think I'd remember where I keep the towels. I sat down in front of the TV this morning and said to Milo, "has our TV always been this small and this round?" I was caught off guard by what made it feel like home though. It was the sound of Milo's beard trimmer this morning while I was still in bed trying to sleep. I used to get so annoyed by that sound in the mornings but this morning it was a familiar sound and while I still wanted to sleep it was oddly comforting to here. (Milo only trims his beard while he is home on the weekends, so I haven't heard that sound in months) Again I am reminded of the simple things in life. While the girls have gotten up every morning at 7am while we've been in Charleston. This morning I didn't here them until 8:10am and then they didn't even call for me. They stayed in their room, laying in their bed, chatting with each other. They too must have felt at home. On our way to church, we got to the corner of our street and Daylia yelled out, "I see the water tower." Since she was 6 months old I would tell her, "There's the water tower, we are almost home." Again it caught me off guard, how comforting it was to here her say that this morning and again it's the little things in life.

Josiah is doing pretty well today. He's comfortable and sleeping lots. For those of you who missed it Josiah turned 4 months old on the 20th. Wow! I can't believe it's been 4 months. I have a hard time thinking about him being 4 months old already. He obviously doesn't do what a normal 4 month old does. I can't let myself think about it too much because it makes me sad. There's a lot you can't let yourself think about. When I think about him having gone through all this in 4 months I can't help but wonder what all this does to a baby in the long term. What do all the drugs do, what does the lack of movement do, what does the lack of contact and touch do. It's very overwhelming to me to think about. Milo constantly reminds me that if we can get through this we'll be able to get through the repercussions of it all too. I constantly pray that God is comforting and holding Josiah tight when I am not there. That he can feel loving arms around him regardless.

We joyfully got to watch the Smiths take their precious Tagg home today! It was an amazing thing to see. What a journey they have been on. We are so glad to have had them here to lean on and walk through this with them for the past 4 months. We will certainly miss them put couldn't be happier for them. Please continue to pray for them as they make the transition back into real life.