October 17, Then and Now

Today was such a strange day!  I had planned on doing some sort of insightful blog post on this day because it marks one year since Ryan and I found out we were having a boy, and that boy was going to have an omphalocele.  I did spend the day reflecting on where we are today versus this day last year and I would have to say that today was a MUCH less scary day!  The thing I remember most about this day last year was trying to eat lunch at Subway with Ryan after we found out and just feeling like I was having an out of body experience.  I could barely eat.  Oddly enough, I just realized as I am typing this that I had Subway for dinner before class.  It was delicious and I had no problems eating it!  So, if that is a measure of where we are at, then we are certainly doing better.

I do have to say that our lives have not been the same since this day last year.  Gavin's health and well being really has consumed our lives.  We are still in the hospital right now and we have no idea when we are getting out.  Gavin became fluid positive again early this week and we actually got bumped back into the ICU for precautionary reasons.  He is already doing better, but everybody is still having a hard time understanding why he is so sensitive to fluid, and why he can't seem to get off of diuretics.  His continuity of care pulm doctor met with us today for about an hour.  He said we can keep doing things to Gavin that works and just because it works, but he really thinks we need to find out why we are needing to do the things we are doing.  Also, Gavin has gotten three UTI's since being hospitalized, and if he gets another one he will need his hernias repaired.  This means another surgery.  While it is usually a quick and easy surgery, Gavin's whole team feels that nothing is really easy with Gavin!  We are all keeping our fingers crossed that he doesn't get another UTI.

As I stated, we are in a much less scary place.  We know what we are working with, and we also know that we have an awesome son that loves his parents.  Gavin gets so excited to see us.  It is such a great feeling!  But life isn't easy when we are living in a hospital.  Our house is a disaster.  Our neighbors take care of the dogs, but they are alone in the house most of the time.  They don't know what rules are anymore!  We also had to start paying a lawn service to mow our lawn with our ever dwindling savings account.  Ryan juggles so much.  The lawn was just one more thing and it was just too much to handle.  Ryan goes home everyday except Thursdays to take care of the dogs and the house a little, then drives an hour up here to see Gavin and I, then heads home again to be with the dogs and go to work the next day.  On Thursdays he comes up here straight from work because I have class.  It is just such a draining life.  I also go to my practicum two days a week, and one of those days I drive up here afterwards and then head home at about 9PM.  We do our best to keep each other's morale up, but it just gets so exhausting.  And we are really sort of staring into the unknown.  We have no idea how or when Gavin will be well enough from a respiratory status to go home!  But I can honestly say when I get up here and he sees me and gets excited I know we are doing the right thing.  And home has really become where the three of us are together, and right now that is Seattle Children's Hospital.

Gavin is still such a fun loving guy.  He is happy almost all of the time.  He has been working on eating solid food lately and he has done pretty awesome for a kid who hasn't eaten orally all that much!  He is also becoming slightly famous!  The Seattle Children's Guild newsletter is doing a cover story on Gavin to help the Guild members understand how important it is to continue raising money for families who have children hospitalized.  Since we have almost been living in this hospital for half of a year, they thought Gavin is a good representative for this story!  AND, there is going to be a tree dedicated to Gavin at the Festival of Trees this holiday season.  We think he is a pretty awesome dude, so all of the attention makes total sense to us!