Time for Progress

Last weekend they started Bennett on a new formula for reflux and it really seemed to make a difference.  He started to eat more and at times was eating more than he had to.  They did a pH probe study on him on Monday to assess his reflux, which came back "with in normal limits".  He had 36 incidences of reflux in 19 hours, but the pH wasn't low enough for them to be open to giving him medication.  I am so thankful that the formula helped, but the only problem is they can't make it as high in calories as he needs because it gets too thick which means he has to eat even more and the past few days he hasn't been able to do that.  He needs to be eating 100-110 ml at every feed and he is eating 80-90ml.  They also want him to eat it in 30 mins and it is taking him 45 mins to get 85ml down.  He is so close, but at the same time so far away.  It's a lot of work for him to eat with the condition of his lungs and the NICU has exhausted all of their resources to help him.  Baically the plan is Bennett either eats or he gets G-Button.  The doctor was hopeful that he would come home this weekend and gave us the second "warning".  She even had all of his oxygen and monitors delivered to the house yesterday.  There is no way he will be home this weekend or in the next week for that fact.  It's hard to get excited any more when they tell us they think he will be home since we have heard it so many times.  I told them I don't want to hear he is coming home until they have set him on the curb and call us to come get him...I was joking, but not really!

Bennett with his pH probe...he was still a happy little guy with all that stuff on him :-)

I have now reached the point that we all, including Bennett, need to move on with life and I don't feel like that is going to happen in the NICU.  There is no way I can let them put a G-Button in him in the NICU without a second opinion and we can't get a second opinion without leaving there.  The only place for us to go is Our Children's House at Baylor in Dallas (about 50 miles from our house).  They have a successful intensive inpatient feeding program.  There are a few down sides to moving him to this program.  He will be in a private room, so unless one of us is there he will be by himself most of the day, it takes a hour to get there without traffic and we all know the price of gas, and Blake could not stay at night (but he could come during the day which means I could see my boys together for the first time since they were 3 weeks old!).  We are willing to do what we have to do to get Bennett the care he needs, but this new program will be a struggle for our family.  The good news is they do send patients home with NG tubes to work in the outpatient program, their goal is to get kids home as soon as possible without a G-Button, and their speciality is feeding.  If they can't get him to eat the amount he needs to then I don't think anyone can.  Jason and I are giving him until the middle of next week to try to do it on his own, but if we are in the same place we are now I have a strong feeling we will have to move forward and try something else.  It's time our family is together!

Daddy and Bennett during their visit today

Hunter and Bailey with 'their baby'.  Hunter is always where Blake is...he even cries when Blake is upset.  It's really sweet!

We are making progress on finishing the nursery.  Jason made the letters above the boys beds.  They turned out so cute!



Blake on his play mat that provides hours of entertainment!

Tummy Time!  Not his favorite time of day!