I haven't posted anything this week because I've been living by the philosophy "if you don't have anything nice to say, don't say anything at all." It's just been a tough week with Josiah being very uncomfortable and inconsolable , high fevers, low blood sugars, and NO answers. I'm happy to say that at least he has seemed the past two days to be more comfortable and much easier to console. In fact yesterday I even got a glimpse of "normal baby" fussiness and it was delightful. Josiah was over tired and fighting sleep, rubbing the back of his hand on his eyes. He was comforted by me holding him, but would cry again as soon as I would attempt to sit down with him. I remember hours of that with my girls. They would only be happy in my arms if I were standing up. This still makes no sense to me, but somehow they always knew the minute I sat down. That's what Josiah was doing for me yesterday. He would fall asleep in my arms so I would sit and he would immediately wake up. What would normally be a frustrating scenario allowed me a glimpse of "normal baby" and made me so happy. So I stood! I think Josiah is going to win a lot of those battles!
We are not bringing Josiah home tomorrow. He is just not doing well enough to come home yet. At this point they are not major things just the combination of little things that are keeping us from coming home. His cultures from Wednesday showed that he has two different infections in his lungs. The good news about that is that they can be treated by oral antibiotics rather than IV. Josiah has required more oxygen over the weekend to get his O2 sats high enough. They gave him more blood this morning hoping that would help with his oxygenation and so far it seems to have helped. Since he got this infection he has not been able to handle his trach collar trials, his time off the vent. They and I are not comfortable sending Josiah home with out being able to tolerate being off the vent for at least an hour. Then his low blood sugar issue is just stumping everyone. So Josiah is back to continuous feeds for now, until some more labs come back. He also has another fever this morning of 101.3. All this adds up to us not going home. Which is okay with us because we don't want to take him home this unstable but at the same time it is very disappointing. We are making plans this afternoon to get the girls back down here with us. More to come. I need to tend to Josiah. Just wanted to give a quick update.
On Friday we finally got to take Josiah out of his room, put him in the stroller and take him outside. This is something I've been looking forward to for a long time and something I thought I would be super elated to finally do, but instead I started crying. It was all so overwhelming, so scary and a little sad. There are many days, most in fact, that all that it takes to care for Josiah seems so normal. Then there are moments where it hits me that this is not normal. Putting him in a HUGE double stroller and packing it full of monitors, oxygen tanks, and a ventilator was one of those moments. It hits me that without all this stuff Josiah would not be with us. Praise God that we have these things to help Josiah until he is strong enough on his own, but it is not normal, it is not easy and it at times makes me sad. It is hard at times to see past all of the monitors , wires and tubes to find our precious boy. I have watched the video of Josiah laughing with his daddy over and over this weekend because it makes this all worth while. I watch it and pray for more moments like that. These past few days have been emotionally hard on me. I just want my baby all better. I want him to play and laugh with his sisters, I want him to sit in a high chair at the dinner table with us, I want him to snuggle into my neck because he knows that's a safe place to be. I just want him to be better.
Watch this great video of Josiah smiling for us as I played with him. We haven't seen his smiles in a long time. It was nice to see!
So Josiah's fever has come down and he's on broad spectrum antibiotics. We are still waiting on the final results from his cultures to show exactly what he has and then get him on specific antibiotics to fight the infection. The blood culture is negative but the respiratory culture is positive. I mentioned yesterday that Josiah's glucose was low, well it was very low, and his nurse last night suggested that we watch his levels around his feeding schedule. Turns out she was right and his levels dropped dangerously low in between feeds, making him appear to be hypoglycemic. So he is back on continuous feeds for now until we figure out what to do with this new info. The plan is for an endocrinologist to come evaluate Josiah tomorrow. He will have a ton of lab work drawn and then go from there. I asked Dr. Forbus today how fast endocrinology worked, like would they have this new problem solved by Monday morning. He says yes, but I know better than to get my hopes up too high. So as of right now we are still on go for an 8am departure on Monday morning. We'll see. We really just need to get out of this place before they find something else wrong with our sweet boy!
Josiah's timeline (maybe God's!) wins again. We came in this morning and Mindy, our nurse, had Josiah's room pretty much packed up. She had gotten boxes out for all of Josiah's belongings and was ready for him to move out. Josiah had a different plan, he spiked another temperature, so that he could have Mindy a couple more days, apparently. His temp has gotten as high as 103 this afternoon. So Josiah has had cultures done and is back on IV antibiotics. We will for sure not be going home until Monday morning now. We are grateful this happened here before we got home but also discouraged that we are not taking him home tomorrow. Obviously, more than we are concerned about our schedules we are concerned about Josiah. His glucose was really low this afternoon, which is a sure sign that his body is fighting something. Please pray for him and also pray for our girls, as they again deal with disappointment and more days away from Mommy and Daddy.
We got back home to Greer this evening. It's so nice to be sitting on my own couch while my husband rehearses music for worship tomorrow, knowing one, I'll be worshiping with him tomorrow and two, feeling hopeful that I'll be doing much more of this starting next week.
I can't believe I'm even writing this but we have been given a date. A date we have been waiting for, hoping for, praying for, for 197 days, a discharge date. Things are being put in place for us to be discharged on Thursday, December 10th! Can you believe I said it! THURSDAY, DECEMBER 10TH! That means we will leave here and move back home to Greer on that day. There will be no temporary stay in our house here in Charleston because Josiah requires too much care it makes no sense to get it set up here just to move home in a couple of weeks. So we will jump right into being 4 hours away from our safe haven.
So I've been told repeatedly that Josiah needs his own double stroller for all his gear, ventilator included. We own a double stroller for the girls but I specifically bought it because it was slim sleek and compact and now I need a big, bulky double stroller. One that his Graco car seat can snap into, has storage underneath and has room in the second seat for his ventilator. So I'm putting out a request to local Wilson Heart readers (charleston, columbia, greenville readers), if anyone has a double stroller just sitting around not being used would you consider selling it to us! I know there has got to be someone out there with a useless to them double stroller that would love some extra Christmas cash! We won't be going out too much with him, it will primarily be used to get us to doctors appointments, and so we really don't want to purchase something new. You can contact us at info@thewilsonheart.com if you have anything available. Thanks so much and please continue to pray for us as we hopefully make our push toward home.
So I never got around to the "Things I'm Grateful For" post I intended for Thursday. Just busy! And just like I haven't ever written the post about Josiah's birth, once you miss the opportunity it's too late to look back, there's no time for that now. There is news to move forward with.
We've sort of had an up and down weekend, but the last two days have been great. As you know we are very hopeful that we will be able to be home for Christmas and so days that don't look like they are headed in the direction of home are tough on me. I've expressed before that being hopeful and optimistic has gotten us through a lot of this but when things don't pan out the way you want optimism sets you up for a big let down. I can't help but be hopeful to be home as a family for Christmas. This is the first time in our 6 months that going home is even in our future and who wouldn't want to spend Christmas under one roof in your own house. On Saturday, Josiah had a bad day with a very low temperature and distended belly, his feeds were stopped and cultures were taken. A rare respiratory bug, from Korea, I'm told, has developed in his lungs. Apparently, it's not something to be concerned about because Josiah hasn't been started on antibiotics. But seriously, Korea! So, on Saturday I get super bummed and feel like there is no way we are going home by Christmas, why am I getting my hopes up, I wonder? Then Sunday rolls around and Josiah has a great day. Very alert, tolerating his feeds well, temperature is good. So on Sunday, I think maybe just maybe we will go home for Christmas. Then Monday comes and it's another bad day with fevers, more cultures, blood in the stool, and stopping feeds again. So down I go on the road to pity party where we don't go home for Christmas. Now Tuesday and Wednesday have been wonderful and Christmas might just be on again! On Monday, with Milo not here, tough days with the girls not wanting me to leave to go to the hospital, I felt for the first time in 6 months that I just couldn't take much more. I just want to go home. Now that Milo's back and Josiah has had two good days in a row life is better.
I got the girls into see Josiah today and I think it was the first time he has been awake when they have been here. It was awesome to see my 3 children together, practically playing together. Josiah was so alert and watched them so closely. It was amazing. Wish Daddy had been here to witness how beautiful his children are!
The girls were so good with Josiah, but I caught a glimpse of life with 3 children!
I realize now that it is going to be quite impossible to get 3 children looking at the camera and smiling all at once!
They look so much alike. They might actually all be mine!
And here is the world premier of the three Wilson's children, Daylia, Hazyl, and Josiah!Josiah is 6 months old today. I can't believe it. Where or where has the time gone. The great news is it's all been recorded right here. I know I will be so grateful to have this in the future. I realized a few months ago that I have never written Josiah's birth story. It was such a crazy and scary time I just didn't do it and there has been no looking back since. I told some friends here that my goal was to write his birth story for his 6 month birthday. Now that day is here and I don't have it done. Maybe when he's 1 I'll get it finished! We are so thankful to have spent the past 6 months caring for our sweet boy. He was weighed today and weighs 5.67 kgs or 12lbs 7.5 oz. WOW! He is really starting to grow! For the first 2.5 months Josiah did not gain any weight from birth, so he still looked like my little newborn. I remember when he first started gaining weight it actually made me sad because that meant he was growing up in his hospital bed. That meant I was missing out on his infancy. I obviously had to let that go and just be grateful that he was growing. He's now 6 months old and still growing.
