Thursday, June 23, 2011

Ah Ha Moment!

Last night we had our meeting with Bennett's doctors about his care.  It went much better than I anticipated and I managed to keep myself together quite well.  Basically they kept saying what they have been saying for a while..."Bennett will be out of here in a few weeks".  I have heard that so many times now I can't get excited anymore until I have him in my arms and out the doors of the NICU...aka baby jail.  They really feel that his feeding issues are related to his endurance, or lack there of, from his under developed lungs.  I went along with that theory until today (more on this later).  They are still firm in that they won't send Bennett home with a NG tube unless he is only needing 1 or 2 feeds gavaged a day.  We came to the agreement if he can eat 130cal/kg/day they will send him home on a 27 calorie formula (regular formula is 20 calories).  Yesterday Bennett only ate 80cal/kg/day...not near enough :-(  The pulmonologist said that if Bennett isn't at the point to come home with his eating in 2 weeks that he will more than likely need a G Button.  I told her I didn't think I would be ready to give in to that in 2 weeks, which means Bennett either eats or stays in the NICU.

Speech finally came over from Cook's today to evaluate Bennett after Dr. Simpson wrote the order I had asked her to write 3 times.  Bennett showed his true colors for her and she got to witness him fighting his bottle and basically shutting down and going to sleep.  The speech therapist feels that he isn't eating because he is in pain from reflux.  She is not the first person to suggest this and I have wondered about it myself.  My 'Ah Ha' moment came when she asked me how he reacted when they run his feed through the NG tube.  Honestly I had never thought about it.  After she finished feeding him and they started his feed on the pump I watched him to see what he would do.  He did the same thing he does when he eats a few times, just not as drastic since he didn't have to fight not taking the bottle...he can't get away from the feeding tube.  I am 100% convinced that reflux is his problem.  Now comes problem number 2...they don't treat reflux in the NICU.  Yesterday Dr. Simpson said that she won't treat reflux unless they are having to resuscitate him and clear his airway.  Tomorrow I am going to have to address the reflux issue again with Dr. Simpson and hopefully she will agree to treat his reflux while we are in this 2 week waiting period.  If she refuses I think we may need to seek a alternative facility for Bennett, or I am going to have to smuggle Prevacid into the NICU daily!

Update on Blake...it seems I've just been writing about Bennett a lot lately. 

Blake is doing great minus his own battle with reflux, but unlike his brother he is being treated with medicaiton!  He weighed 12 pounds 4.8 ounces when I took him to the doctor yesterday (Bennett weighs 10 pounds 1 ounce)!  He is a completely different baby than he was just a month ago.  He wakes up in a happy mood, he has lots to tell us every day and is fastenated by celeing fans!  Last night he slept for 5 hours for the first time...it was AWESOME!  I hope it is a trend that continues :-)

Blake talking to us after his bath

Blake and Jason on his first Father's Day.  This is the onsie I bought when I told Jason we were pregnant!  Did I plan that well or what!

Uncle Jeff with Blake on Father's Day

My favorite guys...minus Bennett...Jason's dad, Jason, Jeff and Blake


Blake giving us dirty looks when we put him in his car seat...it's not his favorite place!

Bennett on Tuesday in one of my favorite outfits...Blake has a matching one, I wish I could see them in them together

Bennett watching his mobile today...it provides hours of entertainment!

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