Day 96 - A Setback

Today is day 96 of Joshua's life and hospital stay. It's just 9 days until Christmas. Unfortunately it looks like Joshua will not be home for Christmas. In fact, we don't know when he'll be home at all. But I'll get more into that later in this post. I wanted to share these 6 photos because they were taken during about a 2 minute period and show him falling asleep. I thought it was just too sweet!! I love that baby!

I also love how he cuddles his Wubba Nub pal!! He has a frog, dog, duck and horse. They're so cute!!

So Joshua weighs around 12 pounds 8 ounces right now. He has started to gain weight again. That's good. He's still only being fed through his PICC line, so it's only liquid nutrition. Nothing in the belly. He is completely off pain meds and is doing really well overall. He is still not moving anything through his intestines, so last Friday we started a study to find out why. We started with a lower GI on Friday. He had a barium enema sent up through the intestines to see if we could get up to the anastamosis (re-connection site) so we could see if there was a problem there. Maybe swelling or a blockage. During that test we were not able to reach the anastamosis but all of the intestines we did get through seemed fine. So we had to wait over the weekend for the barium to pass out of his system to do an upper GI yesterday. So we went down for that (we have to go down to the radiology department for these tests) and his surgeon was there and stayed for the whole test. So they put the barium in through the tube in his nose and we watched it travel down. It takes awhile for the barium to go all through, so we were sent up to the room and they had someone come up with a portable x-ray to take pictures every few hours. At one point, they were concerned that it seemed as if nothing was moving past one point, so they brought him back down to radiology to get more and better pictures. They found that the barium was actually getting through, but really slowly. So this morning they took a few more x-rays and found that the barium did actually make it through to the colon, but it was moving very, very slowly. So, at this point, the surgeons and neonatologists believe that he either has a stricture (a point that narrows and causes things to back up as it can't all pass through) which would need to be removed, or an adhesion which is where the intestine has adhered to some part of the body inside is causing a narrowing. The adhesion removal would not involve any cutting of the intestines, just removing the connection. But either of these are major surgeries and we won't be able to know which it is until they go in and investigate. We can't tell from the outside. Now, there is a chance that whatever it is going on in there, could fix itself. If it's a stricture, it could just grow open with time and if it's an adhesion, it could release itself. There's not a whole lot of chance of those happening, but it is possible.

His surgeon feels so terrible about all of this. He has told us that Joshua is always on his mind and he just keeps going over and over the surgery in his head and he just can't think of anything he could've done differently to have a better outcome. He tries so hard to keep our spirits up. He loves to remind me that Joshua will eventually be a normal little boy, we just have to get this one part working again. He has told us that he's seen babies with enormous problems that they will have to live with forever and that Joshua will only have a scar left after all this. I know he's right, but right now that seems like forever away.

Tonight, Steve talked with him again and he spoke with the other surgeons and they believe it best to wait until 6 weeks after the last surgery which is 4 weeks away from now to do another surgery. So we'll be waiting until then, when they'll do another study to make sure the results are the same and then decide if he's fixed himself or if he'll need surgery. So that's somewhere around January 11th.

I'm not going to lie, our hearts are just broken. We already felt like we were at the end of our ropes as it is, having already been there 13 weeks and 5 days and now to wait another 4 weeks for surgery and at least another 3 weeks after that for recovery is just so awful. I know we will get through it, but it's so, so hard. We're trying to figure out the best way to do Christmas now. I'm hoping they'll at least ok another visit for Noah and Abby on Christmas Day so we can share at least a few hours together. There's also the slimmest of chances that they would let him go home with home nurse care. But when I say slim, I mean really slim. But oh that would be such a relief. Something to pray for!!

So we're trying to keep faith in God, that he will work all this out for good as Romans 8:28 says. It's easy to be faithful when things are good, but this has shown me how much harder it is to be faithful when things are bad. It's so much easier to just be sulking and down than it is to find joy and peace right now. But if I'm going to be a believer when things are easy, I better be a believer when things are hard. I know He will get us through this and that it will all be good. He never did say life would be all happy and fun. Everyone has tough times. Everyone suffers at some time and is sad at other times. That doesn't mean He isn't with us. He is. And so even though my heart is broken, I will chose to be faithful and chose to believe Him. And try really hard not to question His decisions!!

Here are pictures of Noah and Abby from their first Upward games. For some reasons my pictures all turned kind of bad. Abby's picture is ok, but Noah's isn't so great and it's the best one I had! Hopefully I'll get better ones this weekend!

So keep praying for us and I'll try to update more often as we learn more info. Thank you all.