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I was asked this question a number of times this last weekend while I was home in Greenville. Basically, I think people feel like we have to explain so much about what is happening with him, that we must be tired of saying it over and over again.

The reality is this:
I love to talk about my son! This is very therapeutic for us, and helps us to grasp what is going on with him even better every time we explain his story to someone. The thing is, I want to tell you all about my little boy.

I remember when we were a young couple and we got a puppy, but we still had no kids. we talked about all the little things Daisy did to annoy us, make us laugh, and surprise us. Then, we would get together with all of our friends with pets, but no kids and talk about our crazy animals. Then, we grew up a little bit, and in a couple years our daughter Daylia was born. We found ourselves talking about her constantly, and talking with friends who had kids about all her silly mannerisms. Then, the process repeated 17 months later when Hazyl was born. She immediately picked up the nickname "Crazy Hazy" and we haven't stopped talking about how off-the-wall that little girl is.

Now two years later, we have little Josiah. He is certainly the most unique of anyone to ever come through our family and most likely yours as well. So, we understand when we have to catch you up on what he is doing. We know that it isn't like when our dogs have the same bad habits, or our girls have the same cute expressions as yours. Josiah is completely different than anyone you have ever met. But we WANT to talk about him.

Let us tell you about how Dr. Baker grinned at us on day one when his heart cath was complete.
Let us tell you how Dr Bradley ripped a sensor off of his forehead.
Let us tell you about the heart pillows we get in the hospital, with an anatomy picture of a perfect heart on them... (which Josiah doesn't have.)
Let us tell you how Josiah has the same lazy eye as his Grandfather.
Let us tell you how hard you pat him to put him to sleep.
Let us tell you about his thumb splints.
Let us tell you about his crush on Mindy.
Let us tell you about how Dr Friedman earned his Josiah bracelet before anyone else.
Let us tell you about A.B.G.'s air brushed T-shirt with Josiah's name on it.
Let us tell you how Josiah is able to suck on the passy.
Let us tell you how Erin hung a mobile from a surgical light over his bed.
Let us tell you about his 1st photo shoot.

Let me tell you about my son! All you have to do is ask!

You know, there was another Father who wanted everyone to know everything about His Son. And you know what? He was pretty proud too!

New American Standard Bible (©1995)
Matthew 3:17 and behold, a voice out of the heavens said, "This is My beloved Son, in whom I am well-pleased."

Josiah has spiked a fever a couple of times over the past few days, so we are currently taking cultures to rule out an infection. He has spiked the fevers usually within an hour or so of when he next pain meds are due and so the thought is that maybe Josiah is going through some withdrawals because we have been weaning the amount of pain meds he gets. Ruling out infection rather than just assuming it's withdrawal sound good to me.

Josiah sort of hit a wall early this week as far as weaning on his ventilator support. We were on week 2 of a 4 week plan to wean off the ventilator and try to extubate again. But Josiah put a stop to that this week. He started not being able to keep his O2 sats (the amount of oxygen in his blood) up high enough and so we had to go back up on support. With this happening this week the MD's have discussed it and it seems like the new plan is to find the least amount of support that Josiah can tolerate comfortably on the vent and just allow him to feed and grow. We will continue to feed and grow until Josiah is big enough to have his 2nd scheduled open heart surgery. He needs to gain at least 2 more pounds (hopefully more) before he can have his Glen (the 2nd surgery). So in order to monitor that we are now have an order to weigh him twice a week to check on his progress. What does all this mean... well, Milo and I are preparing for at minimum another 3 months. That doesn't bother us in the least because if we are still here in another 3 months that means our little love is still with us. I wish everyone could meet Josiah. He is just amazing. He has captured the hearts of many of our nurses as they have become such an amazing part of our lives.

We are now trying to figure out how to make a new normal here in Charleston. One of our nurses suggested getting permission for our family to be together with Josiah a couple a times a week. The rules are usually no more that 2 people at a time and no children under 12. So that would be awesome. She suggested that we could schedule a couple evenings a week where we would bring the girls in to help with Josiah's bath or read him some stories. She even suggested us all watching a movie together, a short movie that is. I know the girls would love that and it would help Milo and I feel like we are a family of five. I'm hoping to find a pre-school for Daylia a couple days a week to give her some outlet. It is so so hard to plan though. I talked with a mom whose daughter has HLHS and just had a heart transplant this week and she explained to me that for 5 years now they have only been able to plan a week at a time and sometimes that doesn't even work. We are still working on what new normal looks like.

Here is an interesting article that was published in the Wall Street Journal earlier this week. It talks about the newness of working on children's hearts and how there isn't much out there as far as research and development for children with congenital heart defects.

Click to view the article

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Josiah has had another great day! Not much to report. His O2 sats have been great, his color is more pinkish. He had his final chest tube pulled out today. This time it came out on the MD's schedule not Josiah's! His foley came out last night. Which means I've gotten peed on twice today. I'm totally not use to this boy thing.

Notice his neon colored thumb splints. They are designed to stretch out the muscles in his thumbs so that he will keep his hands open more. One of the nurses here, Harriet, thinks that he looks like an 80's aerobic instructor when he wears them. So we are hoping to find Josiah a neon sweatband and some leg warmers to go with his splints!

There is another little girl here with HLHS that just had her Norwood (first open heart surgery)today. She is struggling some now and so we are praying for her and her family tonight. It was hard to watch and relive the memories of that day as the family was not given the best of news after surgery. All I can think to do is pray that God continue to work His miracles on this precious heart as I have witnessed so many times in the past few months.

Josiah has had about 5 great days in a row! We are so extremely grateful for that. His O2 sats have stayed within the range that the MD's want to see them. We have been able to wean down on the ventilator very slowly without upsetting Josiah. He's had great color as well. On Thursday, last week, Josiah had a CT scan done to take a closer look at the blood flow to and from his lungs. The report from that showed that there has been some narrowing of Josiah's left pulmonary artery. This is the artery that sends blood to the left lung to pick up oxygen. With it narrowed not as much blood can get to his lung, not a good thing for him. We were told that day that the only way to fix this for Josiah was to have an open heart surgery. We were also told that no decision on that would be made until this week when Dr. Bradly (our surgeon) got back from vacation. We spoke with him yesterday and were very glad to hear that he thought that we would be able to fix this in the cath lab (a risky, but much less risky ordeal). He also said he wasn't convinced that we needed to fix it right now. We may be able to wait until Josiah's second surgery to fix it then. Either way that is good news!

Josiah's greatest hurdle at this point is his lungs. Excuse my word choice here, but Milo and I have taken to referring to Josiah's lungs as crap! That's the best way I seem to be able to describe the condition of his lungs. We are very specifically praying for a miracle in his lungs that would turn his lungs from crap to gold! We have been told by several doctors that the biggest reason that babies in his condition don't make it is that they're stay in the ICU becomes so long that they continue to get infections and eventually infection overtakes their bodies. With that said... we want to get out of here and bring Josiah home ASAP! In order to do that Josiah's lungs need to heal! So we are praying for another miracle.

On another note, we are still working on turning my breast milk into skim milk. One of the nurses here has made this her project. She has actually begun spinning my milk in a centrifuge and pulling of the fat. She then tests the fat content and compares it to the formula he is currently on. So far it looks very promising. Several of the doctors are very excited about this possibility. We just need the okay from the "boss man," Dr. Bradley. Our nurse has a meeting with the attendings and Dr. Bradley on Friday to present all of her findings and discuss it as a real possibility. In light of the news about infection being one of the biggest risks for Josiah, I am really hoping that Josiah can get some of the great nutrition from my breast milk.

Praying for continued miracles for Josiah. We also have two new HLHS babies here in the PCICU. Please pray with us for one little girl, Maia, who is having her open heart surgery in the morning. Also for another baby (I haven't met the parents yet) but I know that this baby had the same intact septum that Josiah had. Thanks again for all your prayers.

We've had a tough couple of days of news here. We had a long talk with one of the Peds Caridologist yesterday that was a reality check. She sat down with us to talk about Josiah's immediate concerns and his long term prognosis. Basically his immediate concern was this infection that he has. No big surprise there. What was hard to swallow was her opinion of his long term prognosis. Basically, her words were that Josiah's long term prognosis still in not good. The way she said it made both Milo and I realize she was very serious and needed us to know that Josiah is nowhere near being out of the woods yet. I asked her what the outcome of any other babies who had come through here with HLHS and an intact septum was. Her response was that in the 4 years that she has been here, Josiah has made it further already than any other baby. That was a shock to me. The MD told us that with the intact septum, Josiah was dealt a very short stack. That the complications that come from the intact septum are extremely hard to overcome. I don't want to go into detail on all those complications, they are the things I have been describing for several weeks now. The point in all this is that Milo and I went from thinking it was just a matter of time before we could bring Josiah home with us to moving back to wondering if we will take him home with us.

The thing is none of this changes anything at all because God gave Josiah this heart and this life and He will orchestrate the outcome. For weeks now I've been longing for the day we can bring Josiah home with us. I am determined now not to long for that but to live in this day. The day that we have with our 2 beautiful daughters and our miracle of a son. I will treasure the drawings Daylia hung to welcome us home on our apartment door. I will enjoy and laugh when Hazyl covers her entire body in Sharpie marker. I will cherish the amazing moments gazing into Josiah's eyes while I stroke the top of his head. God has given Milo and I so much. I am determined to be grateful for every bit of it even HLHS. In an attempt to be transparent I can honestly say that I'm not there yet but hope to be one day. Where I know I am right now is that I love all three of my children and my amazing husband so much and I'm incredibly grateful for every moment God allows me to have with them even these very difficult moments.

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So today marks 10 weeks! Not that I'm counting... it really is hard to believe and we are happy to stay 10 more if needed. So the MD's, nurses, therapists, everybody had their big meeting regarding Josiah's care for the next month. Out of that came a couple of things. One being a potential time frame for us. We were told yesterday to expect a minimum of 2 more months. That wasn't completely surprising to us. It was just the minimum word that was a little more than we expected. As far as Josiah's immediate care is concerned the plan is too have an in depth echo (kind of an ultrasound of his heart) done to make sure there is nothing going on with his heart function. That was done earlier this morning and we are still waiting to hear the results of that. The Md's have decided on a 3 week ventilator weaning plan. So we will chip away very slowly over the next 3 weeks the amount of ventilator support Josiah receives and hopefully be in a place after that where we can attempt to extubate him again. That is the main goal for Josiah right now. We will reevaluate his progress at that point. One other thing that came out of that meeting was a denial of my request to hold Josiah while he is on the ventilator. That is frustrating to me as my heart aches to feel him in my arms again. Both Milo and I agree that there is this odd tingling feeling in our arms as we stand over Josiah's bed not being able to pick him up.

Josiah spiked a fever this morning of 102, so his nurse sent cultures off to the lab to see if they grow anything. In the meantime his MD started him on a course of antibiotics just in case. We will know in the next couple of days if he has an infection. Praying that it is nothing major.

Again for our faithful prayer partners we continue to seek your prayers of healing for Josiah and also ask that you pray for our precious little girls. This experience has taken a toll on our entire family, grandparents included, but I worry most about our girls. They have actually been doing better with all of this in the past couple of weeks and we continue to pray for them and their understanding and patience through this. I am so incredibly grateful that my parents have been able to stay with us and help us with the girls so that we can still be a family. The girls have grown so much this summer and I can't imagine having missed that. Those of you who haven't see our girls in a while, wait until you here Hazyl talk, she's amazing!

Josiah was weighed yesterday and he has gained a whole pound since birth! That was great news to hear! Even greater news was that I found out that another nurse had weighed him about 3 weeks ago and he was less that birth weight so she didn't bother to right it down. That means he has gained that pound in 3 weeks! I was really excited to hear that. That's what the MD's keep telling us he needs to do to get better... grow.

I've been a little discouraged this week because I was told that it was going to be a long while before Josiah might be able to go back to breast milk... if ever. In one sense I would love to be done pumping because it's no fun. But in another I know how good breast milk would be for him and I want so much for him to have it. I was telling one of Josiah's nurses about this the other night and she told me about how at a hospital she used to work at made human skim milk. They would take the breast milk and put it in a centrifuge to spin the fat to the top, then separate it. The whole reason Josiah can't have breast milk right now is because of the fat content. The fat makes his lymph system drain more fluid into the space around his lungs, which in turn makes it more difficult for him to breathe. So we are in the process of researching if turning my milk into skim milk might be a possibility. I'll keep you posted!

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Picture #1
You may ask, "Is that a cup on Josiah's butt?" The answer would be yes, Josiah has a Styrofoam cup attached to his butt! Josiah has a really really bad diaper rash. So the latest technique here in the PCICU is to put direct oxygen on his butt. Notice the tube sticking out of the cup, that would be an oxygen tube. The cup is acting like a direct funnel for the oxygen. The idea, keep the butt dry and give it some air and it will heal faster. I'm glad to say it is working pretty well.

Picture #2

I haven't posted much in the past couple of days because not much has changed. We've had several boring days now, which is ok. Our biggest hurdle continues to be his lungs and getting off the ventilator. MD's had hoped to get him off last Friday or at least over the weekend, but as they tried to wean the ventilator Josiah showed signs of struggle. It's becoming very evident that his lung development, the major thing they warned us about, is really affecting Josiah. Because of Josiah's intact atrial septum (the wall between the upper two chambers of his heart)in-utero blood could not flow the way it needed to and would get backed up toward his lungs. Having this happen while his lungs were developing and growing caused them not to develop correctly. What the problem is exactly, I don't know, what I know is that his lungs just are not strong enough to keep up with his breathing at this time. And what we've been told is the only remedy at this point is time. Time for him to feed and grow.

They have started a new strategy for weaning off the vent or for exercising his lungs to make them stronger. Instead of steadily decreasing the breaths per minute until he can do it on his own. He now sits most of the day at a higher rate which allows him to rest well and then occasionally do what they call a sprint where they turn the vent rate way down for 30 mins. After 30 mins. they turn the rate way back up and let him rest again. They will gradually try to make the length of his "sprint" longer and at a lower rate. Hopefully, this method will strengthen Josiah's lungs more quickly. It worked great for our friend Tagg so maybe it'll work for us too!