Growing Up

So sorry for everyone looking for updates,  things got really crazy while we were in Salt Lake at Primary Childrens.  Every weekend was spent running down there and Darcie stayed the whole time so we didn't take the time to update the blog.

I think most everyone knows that Grayson was transferred back to EIRMC in Idaho Falls.  The doctors were very disappointed that they didn't do more for him at Primary's.  I have been told what wonderful experiences people have there and the amazing doctors they have.  Our experience wasn't bad but we get there they look at him for five minutes tell us he doesn't need surgery and then ship him home.  If they had waited a couple more weeks we might be in a different situation.  A little frustrating, now we are kind of at a stale mate.  Nothing we can really do but wait.

So the plan is to continue to get him growing and eating.  His oxygen needs haven't changed much at all. They did put him on wall oxygen and his stats were ok but he started working too hard to breath and they put him back on the high flow oxygen.  That's about the only thing that has happened in the last few weeks.  He is growing like crazy and is a lot more fun now.  We can pick him up and hold him anytime we want and he interacts with us.  Well as much as a regular newborn would anyway.

His due date was April 8th.  So as of today he is a corrected 4 days old and now weighs 7 pounds.  It's hard to see him so big and outgrowing clothes and still stuck in the hospital with no real end in sight.  The doctors are checking his heart every week to keep an eye on it and from what I gather they are in contact with doctors around the US trying to find someone who will fix his ASD so we can get him home.  I have no idea how big he needs to get before something can be done.  He is big enough for the procedure were they go in through the groin and into the heart , the problem is the direction or the hole.  They are worried about blocking other valves when they try to patch the ASD.  So again he needs to get bigger so he has a bigger heart and less chance of that happening.  If they can go the artery route he will come home much quicker.  If they have to do surgery it is probably a month after surgery. Plus when they do find someone who will fix his heart it will mean another transfer and not to Salt Lake, more like Denver or Washington, could be anywhere.  Salt Lake was bad enough, at least I could drive there every weekend.

They have been checking his eyes to make sure they were growing correctly and seemed a little worried that they might have to give him a shot to help them grow, or do a lazer procedure but last test seemed good and things are looking better.  They said there isn't any problems with his regular vision but he may have problems with his peripheral vision, so they will continue to monitor and make sure it all looks good.

We did get a cake on his 100th day in the NICU.  It was just a small cake but it was nice for them to acknowledge us and let us know they understand how difficult this is. Here are some recent photos and a video:

Dad, so far, is the best at feeding Grayson, he has taken two full bottles (well almost just a few mL short). Makes Darcie so jealous.

 Grandma Ricks holding Grayson

 Grayson loves laying on Mom and Dad, his stats usually improve and lately he has been tucking his arms under his chin like this.

 This is our cake, it was small about 6" in diameter

 Grandma Dayton holding Grayson

 This may not make much sense seeing just the picture and not having the doctors explanation, but this is a picture of where the hole is in Grayson's heart and how the patch would be placed if they went in through the groin.