Friday, November 05, 2010


This new feeding tube regimen is taking some getting used to for both me and the boys.  They both notice that I'm not connecting them to a feeding tube at nap time and ask me "Mommy, plug you in?" and lift up their shirts.  But then they are so tired from the Periactin that when I cover them with the blanket they're asleep that fast.  And they are more cranky and whiny and super temperamental because they are much hungrier.

For me it's quite an adjustment because my days have to be so regimented about being prepared with their pumps.  I have a routine in the morning for cleaning and prepping their feeding pumps that I no longer have to do until just before bed time.  I feel at a loss, like something is missing.  It's like finding yourself at some random point in the day standing in front of the open refrigerator door wondering what you're looking for and why you're standing there for so long. 

I did have huge panic attacks yesterday because the boys ate and drank so poorly, but then in hind sight, it wasn't that they ate poorly, they just didn't eat more than they usually consume to make up for the calories and fluids they are now not getting in the pump.  It's okay, it's just one day, the first day of this new routine.  They are eating slightly better today, if not behaving more abominably because of their hunger and fatigue.  I just have to remember what my friends Trish and Becky have experienced with their own tube weening kids, keep it in my head like a mantra.  Today will be a great day, tomorrow and the next day and maybe two more days it will be really horrible, then suddenly it's another glorious hollow leg day where they eat all the missed calories in one meal.  It's going to take time to come to terms with what other moms of Failure to Thrive kids who don't have feeding tubes deal with every day.  At least I have the tubes to fall back on, they are a safety net for which we struggled and stressed and researched our butts off, and fought with doctors over time and again.  I don't regret the tubes, I don't believe that the boys would have survived without them.  But my heart aches for my friends who don't have that safety net, one no one wants and should do everything to avoid.  But damn it's nice to know that it's there.

We have been putting the boys to bed 15 minutes later each night this week in hopes that we will have a smoother transition for Daylight Savings Time this weekend.  I think it's finally paying off because instead of both boys waking at 6am, Evan woke at 5:30am (nightmares? hunger?) and once we soothed him he slept until 9am!!  Cameron slept until 7:45am.  As for eating, it's far easier to feed these guys on a one on one basis, but rarely ever possible.  Today we did and it was great.  At lunch we took the boys to visit a new (to us) grocery store, Wegman's, and I brought home a hot lunch for myself.  Cameron took one look at it and demanded some of my chicken.  Only it wasn't my chicken he wanted, since when I offered it to him he shoved it out of his way.  I pointed to my fairly peppery Egg, Cheese and Artichoke fritatta and he went crazy.  I gave him a little and he wolfed it down demanding more.  He ate half of it (I pulled out the big chunks of artichoke that I know he would have trouble with) and was shocked that he loved it, rolling his eyes like it was ecstasy not caring that it was peppery at all.  I offered it to Evan, who took a bite and pushed it out with his tongue, but he didn't react negatively.  He just didn't know how to eat it because it wasn't puree and it wasn't a solid, so he ejected it.  I will be going back to Wegman's to get more and the recipe to make it at home this afternoon. 


Annie and Jason said...

YAY :)

I can't even imagine what it must feel like to suddenly not have to put the pump together with food in the morning... I too would be like, "uh, now what?". This is GREAT, but yeah, I imagine the random empty feeling.
You're doing AWESOME, I'm so proud of you!!