*there's a change in plans

This was going to be an announcement that Will's heart surgery has been moved to 1 month from now. We were told that at the end of last week. We were happy with this plan, but have since learned that is a very tentative estimate. So now we think it will be sometime between now and May. Which was the plan all along. Things change so frequently for Will it difficult to even share the details. Over the course of today alone, I have talked to 4 different people about him. Even if plans get clarified tomorrow, it could change quickly so that's why I don't bother to tell you. It doesn't mean that he isn't getting good care, it's just that everyone is trying to come up with ideas of how to get him home quickly. Unfortunately for us the only idea that really works is to wait until he's ready.

The scheduling of the heart surgery depends on: him being as big as possible (and close to 4-6 months old), possibly needing surgery sooner because of trouble with his heart (which he hasn't had at all), and time of year (winter isn't the best time due to it being cold and flu season. Will is already more susceptible to getting sick and needs to be strong to recover from surgery). I thought I would be able to share bits of information about his OHS as it gets closer, but it seems like we will know the most about his surgery right when it happens. And by the time I process all the info myself it will be time to say "Will came through his surgery great!".

I can say that his ability to eat is improving. And our willingness to stuff him in our coats to sneak out of the hospital has grown as well. We are tired of being here and ready to take him home. I have been thinking we were about 2 weeks away from taking him home for the past 7 weeks or so. We aren't worried about him being okay because we know he will be fine. He's doing well considering all the setbacks he has experienced. But this can only go on so long before it starts to wear you out. Thanks to everyone for supporting us and lowering your expectations about us as friends, family, and coworkers. I'm not good at returning phone calls or emails and when I do I may not make sense. And the box of unused thank you notes is starting to scold me every time I walk by. Please know we are very grateful for every meal, phone call, gift, hand me down, snack bag, thought, and prayer!

 

Still sleeping with hands in the air.

  

 

  

 A bath in the new room.

  

 The sinks are designed to double as an infant bathtub.

   

 Don't forget my back Daddy.

   

 His feeding tube was temporarily removed for the bath.

  

The days of photos without blurring may be gone for quite awhile. Will is just too big and mobile to lie there and take it when we're snapping the camera in his face.