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Cook Hospital Day 5 - Update

Monday, November 16, 2009

This update is written by Breck as Brian has returned home to continue school work for now.

 
Yesterday was a busy day!  Breck's mom and Oliver came up from Waco and Breck's father came over from from Louisiana.  We really enjoyed their company.

Oliver had mixed feelings about being here.  He loved seeing us and playing with the toys in the hospital playroom.  But he didn't really care for being near Bennett.  Oliver eventually warmed up and would sometimes come over and be gentle with Bennett but every once in a while, he desperately wanted out of that hospital room and away from that baby!

We have spent the last few days trying to explain to the doctors our concerns about Bennett...about how he screams in pain 60% of the day...about how nothing we do seems to comfort him and how we are at our breaking point with listening to our baby scream in distress.

Breck asked Bennett's main doctor what might happen if we can't figure out a way to help Bennett gain weight without putting him in significant pain.  The doctor said our last resort options are to give him continuous feeding 24/7 or to give him continuous TPN (basically injecting nutrients directly into the blood stream, bypassing the GI tract completely).  While the doctor said these are unlikely steps we'd have to take...he did say, "Bennett is a tough nut to crack."

When we spoke with the GI doctor yesterday about our concerns, he suggested that we change Bennett's formula immediately.  He wondered if Bennett is allergic to the Pregestimil formula - the reason he is not tolerating it.

We didn't know if it would work but we were glad to try something else.  The list of "tried and failed" interventions was beginning to get long.

Yesterday afternoon, we gave Bennett a very expensive and fully digested formula called Elecare and waited.  We waited for the squirming...the arching of the back...the screaming...the spitting up...

We waited.  And waited.  And waited.

It *never* happened!!  Bennett tolerated this new formula beautifully! 

We couldn't believe it.  Could this be his only problem?  Was an allergy to the Progestimil the whole reason for his discomfort and the reason we cannot get Bennett to gain weight??

We are still in the "wait and see" period.  Bennett has shown some distress when being fed the Elecare through the pump at night when we start pumping it into his tummy too fast.  But overall, it's like a night and day difference.  Now, instead of screaming 60% of the day, Bennett is upset only about 5-10% of the day.  And now, Bennett seems like a normal baby - cooing, looking around, maybe even flashing us a smile or two.

We know that if Bennett can tolerate his feedings, he will begin to gain weight.  If he can gain weight, we will be on our way to experiencing life with a healthier baby.  How wonderful that will be!

We will continue to monitor Bennett and see!

4 Responses to “Cook Hospital Day 5 - Update”

  1. Well it sounds like you may have found the trick. We'll keep praying for Bennett and you all,

    The Kuhl's

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  2. I will pray (especially during my new prayer time tomorrow) that Bennett continues to tolerate this new formula. I can only imagine how exasperating it must be to keep hitting dead ends. I pray for your continued strength as you all fight for Bennett to get well.

    P.S. Sorry for the slow responses - I've read every word, but have been on the go and unable to comment from my phone! Love you, girl!

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  3. That's wonderful news. I hope tonight is another night where he tolerates his feedings. You all continue to be in my prayers!!

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  4. Hopefull everything has settled a bit tonight...I don't need a time to say a little word for you guys...you are on my mind so often...asking for some help, comfort.....but if you need a specific time let me know....seems I just don't keep days and times straight. Glad 'Uncle' Dave is here to help--of course he isn't much better!! I am know this has been very trying for all of you...my heart aches for you!! Love you 'Aunt Norma'

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