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Mommy, please hold me!

posted Jul 13, 2013, 1:52 PM by Melissa Burke   [ updated Jul 14, 2013, 9:46 AM ]
First off, sorry for the delay between updates, but the drive to and from Durham has left me with about zero time these days. Plus, Peter has now plotted to have us at his bedside around the clock as he has started a nightly fussy period from 9-midnight and demands being held. So I've been coming back the last several nights...I mean how could you resist this face?

Hmm, how can I make sure that she's always here to pick me up?

Over the last few days we have made great progress on our feeds. Peter continues to tolerate his NG bolus feeds and we continue to increase the amount he takes. He is now a big boy, weighing in last night at 7 lbs, 8 oz. He also continues to show us more and more mouth action, including sucking his fingers and drops of milk on mom and dad's fingers - yay!  Even though there is progress, we have decided to move ahead with the g tube surgery because it looks like it will still be awhile until he can take his feeds by mouth. We are slated for the surgery Wednesday (7/17). We are hopeful that he tolerates it really well and perhaps getting the tube out of his nose will reduce some of the secretions he has been dealing with since birth.

He is still battling his oxygen saturation drops and bradys but they seem to be getting less severe and less frequent. We have now discontinued his dose of Robinul which was meant to dry up his secretions but also seemed to thicken them and make them harder to manage. So we are on about 24h without that drug and I do think he might be better off. His new thing is during his fussy period he cry, cry, cries and then seems to hold his breath and Brady/dsat. It was worse on Thursday night before we eliminated the Robinul so we are hoping that might have been a factor.

Yesterday Peter went for another MRI just to see if things had changed since the one he did on day 7. We are awaiting the results but looks like it might be Monday before we hear at this point. I was so proud of him though - he made it straight thru the VERY loud procedure despite being wrapped up in this have to hand it to him - he's a trooper!!
Peter awaiting his latest MRI