Expect Nothing...

This morning when we called the Pediatric wing to check on Hunter they told us that he was again doing well and that he had eaten nearly all of the 35 ml's of milk they had given him. This is good news. When Stella, Megan and I arrived at the hospital we found that they had moved Hunter to a room closer to the nurses station. This was somewhat comforting but we are not nearly as comfortable with the 3 to 1 care than we were before. Not that the level of care is any less but the fact that he is 12 days old and now only being checked every so often, and he is monitor free now...so we are anxious. They told us on the phone this morning to bring our car seat for the "car seat challenge". This is where they put him into his car seat with monitors attached to him to see how the position of the car seat effects his oxygenation and vitals (he passed)...this also means that they are getting ready to release him. Yes, you read that correctly, when we arrived today they told us that we could be discharged this weekend! Craziness considering that 1 week ago today his chest cavity was wide open for the Junior Mint to land in (Seinfeld reference).

As we walked in Stella was excited to see Hunter. Hunter had a gift in his crib ready for Stella and Stella had a gift for Hunter. She was excited to see him but that didn't last long. I was excited to hold him and Megan was busy gathering information and discussing discharge, medications, monitoring etc...I picked Hunter up and took him and Stella for a walk. He still has an IV (not connected to anything) in his head and two "pig tail" drains stitched into his chest to drain fluid that may accumulate around his lungs...of course these need to stop producing fluid and be removed prior to discharge, the fluid is less and less lately. When I took him for a walk we asked our Case Manager, Tammy, if we could walk outside of the PICU and Ped's area...she said "sure!"...so Stella, Hunter and I left the "high security" area (for lack of a better description) for the first time ever, we walked around the hallways as if nothing ever happened. Outside the Ped's area there are large paper mach'e zoo animals that Stella was excited to show Hunter. She named them all and told him what each was...it was really fun but I felt like I was doing something wrong as this was the first time I had done anything like this...walking around freely with my two kids...wait, I have two kids? It was a very oddly proud moment.

When we got back to Hunters room Stella was getting restless and Megan needed to pump. We all sat down as Megan did her business, I fed Hunter a bottle and Stella played in the sink. The big show was when the Life Flight helicopter landed outside the room...

We decided that Megan should spend the night with Hunter tonight as they are saying that we can go home as a family on Sunday. Megan doesn't like to leave Hunter alone and has spent allot time with him now that he is out of the ICU. She is there tonight to learn about the medications we must give him twice daily, how to use the stethoscope to monitor his heart rate twice a day and all of the other things we need to know. She is mostly there to get to know her son, his patterns and hopefully they can teach each other how to feed him... He is still 50/50 on whether he gets through an entire feeding...so we may have to come home with the feeding tube intact.

When Megan arrived tonight she said he was in his bed awake staring toward the door in this huge room, alone...we know he can't see more than an inch but he can certainly hear where the action is...what a sad thing to imagine. I am glad that she is such a devoted mother and that she has done what she has to help Hunter along the way. When we just spoke she said "it's weird to try and get to know a kid that I thought I knew" usually you bond immediately and learn each others behaviors...we are just a bit delayed, but we'll catch up.

Today we learned that we can't give Hunter a fully submerged bath until 1 week from today...he needs one, not that he stinks but he has been through so much and needs a good soaking. Among the many things that we need to learn and that are thrown at us every time we are at the hospital the one thing I have heard Tammy and Paula say is "we have a fully repaired heart". That sounds so good to us you can't imagine. We still have miles of test, follow ups, potential for this and for that and so much to learn but we have the worst behind us. We are so happy to be on this side of surgery...now we have to prepare for the little guy to make his grand enterance. I don't even know how odd it will feel to put him in the car seat, walk out of the double doors of the hospital (or hop-i-sol as Stella calls it), to see him in the back seat and to lay him in his bassonet...adjustment, but long awaited adjustments. If we feel half as good as we felt as the four of us sat today in Hunters room, I know we'll be just fine...we expected nothing and Hunter exceeded our expectations.