Where is Time Going

Wow.  Time in the hospital goes at a different pace.  I have been trying to update this blog, but between not sleeping, pumping every three hours, rounds, occupational therapy, physical therapy....you get the point.  Things are crazy!

Where are we now: We graduated to the surgical floor on Thursday, so Gavin was only in the NICU for three and a half days.  But, our next step is a big one.  Feeding.  Ugh.  Gavin's omphalocele membrane was pretty thin, so we are being VERY conservative with feedings.  Right now he is getting 5 cc's an hour of breast milk.  He is getting this through an NG tube (through the nose), and then we also give him 5 cc's twice a day orally through this really cool binky trainer. Basically I connect a syringe of breast milk to the end of a tube that goes through the tip of a binky.  I worked with occupational therapy today while using the binky trainer and Gavin has excellent eating abilities, other than the fact that he gets worn out because he has a giant ball of weight on his stomach.  So, stamina is going to be his biggest challenge.  As he grows, this should become easier.  Thankfully he had a giant poo today, so things are definitely working in there.  Also, his omphalocele is thickening up nicely.

In terms of going home, the hope is that we will be going home in two weeks.  We have three goals that need to be met.  1.  Gavin needs to gain weight.  Thankfully he gained some weight last night.  2. He needs to be getting at least 21 cc's an hour of breast milk, and the hope is he takes one of the hour's worth of food orally.  3.  Ryan and I need to be doing the dressing changes on our own.  I am not worried about this.  We were telling the residents this weekend how we like it done.  Although, it is definitely a two man job right now.  Gavin has some strong legs.  Doctors and nurses even comment on how strong he kicks!  Either way, I am really hoping his feedings progress.  After we go home we will have in home occupational therapists and outpatient visits to children's to keep working on transitioning him to complete oral feedings as he grows.

Hospital living is exhausting.  We don't get the luxury of sleeping when Gavin sleeps because there are constantly people coming in our room to talk to us about him.  It is exhausting!  I have also discovered I do not want to leave him here alone over night.  So, hopefully that won't be an issue for too entirely long.  We just need to see what he can do in terms of eating.  And we are thankful to be out of the NICU.  We actually get to do parent things while we are staying in his room.  It is nice to be able to change his diapers and hold him whenever we want.  And we are slowly losing wires as he requires less and less monitoring.  Right now we are down to his IV that is pumping him full of extra nutrients, and then his NG tube that is continuously feeding him breast milk.  What a relief!

Overall, while we are so exhausted, life is easier knowing what we are dealing with.  I get antsy to go home, but I remind myself how lucky we are that he is doing so well.  Also, I have to slow down and remind myself that this will pass, and soon this will all be a memory.  But I definitely have moments.  Yesterday was rough.  I didn't realize that we would be starting his feedings through an NG tube, so it was pretty rough to hear.  I was concerned about losing the ability to feed orally, and I just hated that we had to put another tube in him after enjoying a tube free face for so long.  I guess it just felt like we went backwards.  After a night of some sleep, I realized it is a step in the right direction.  But, there are just moments that I feel terrible that he has to go through this.  Sometimes I just need a good cry here and there.  It happens.  It is just hard to watch your child have to fight such a fight.  You feel helpless as a parent, and you know that you would do almost anything to fix it if you could.

All in all, like I said, we are lucky that Gavin is doing as great as he is.  We just need to get through some hurdles and we can get him home to his Star Wars nursery.  The Force has been with him thus far, so I have a feeling that it will continue to be with him.

Until next time!

Carly, Ryan and Gavin