Tuesday, May 13, 2008

Regulations

Have I ever mentioned that Sam is not a good sleeper. On top of all of our other trials and tribulations I can count on my fingers and toes the amount of times that Sam has slept straight through the night. I always thought this could be due to him being fed continuously throughout the night. Since Sam had his Nissen Fundoplication surgery we can now feed him more throughout the day and keep him off all feedings at night. Well we started not feeding him at night this past Sat. and he has been sleeping straight through the night beautifully. But now we are having trouble regulating his feeds during the day. We are getting there slowly but surely with lots of set backs and changes. Its all so frustrating and scary. I am such a bundle of nerves lately I don't know how anyone can stand me. To be honest its hard getting up in the morning knowing that on top of the usual every day battles I have yet another to contend with that so much of Sam's existence weighs in on. So how do I get up and move forward. I have no frigging idea... and this too shall pass...

P.S. No word from Duke yet, though I can just barely feel for the day when they call and set the date for us to go down there.

3 comments:

Barbara said...

Kisses and hugs!!! I know its not easy and I hope you get there sooner then you expect! You of all people know, you just don't know when...

Hey, when we started feeding John by mouth we always had problems with John sleeping. Still do... But, its getting better. Anyway, his ENT doc did a bronch and said he had signs of reflux (John also has the fundo) so I was a little surprised. He told us not to feed him an hour before bedtime. And avoid lying down for 2hours after eating, 3hrs after an evening meal. We also elevate the bed at night about 4-6inches.

You probaly all ready know this but just in case....

Take care,
XOXO
Barb

Vanessa and John said...

Thanks for all the info. They emailed me back but no sibling cord bloos transplants yet. :( I tried, thanks again!!

Nicole said...

Hang in there. You are the best ever!!!
Love, Nicole S.