Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, October 10, 2011

Our Plan Isn't Always "The" Plan

A lot happened to day at the hospital -- some good, some frustrating. But again, that's life right now.  The good news is that Meagan is tolerating all her feedings well now - she is proving that she doesn't need that motility agent anymore and Meagan is now down to normal feeds - 2 ounces every 3 hours. No more continuous feeds.

The other good things were her test results.  Her CMV  test came back negative in her blood, so the Infectious Disease doctor said she won't see us anymore.. which is a good thing. Also, Meagan's new blood and urine cultures were negative for any sort of residual infection. The doctors therefore took her off of the antibiotic this afternoon.

 She is still on a low dose of Klonopin - a medication used to treat seizures or panic disorders. In her case right now, it's used for the latter - she's been so incredibly irritable and inconsoleable over the weekend, they started her on a twice a day dose.  It helps to take the "edge off," and calms her so when we do need to do things like work on feedings, we actually have a chance instead of her freaking out and us losing the opportunity to work on her feeds.

Will it come back? This is the question I found myself asking today regarding Meagan's sucking ability.  There is still absolutely zero sign of her wanting to, or being able to suck. At. All.  She took down bottles - even 36ccs (over 2 ounces) before her surgery.. and now, nothing. She will 'root' around and act hungry - but there is no follow through with her oral skills.  I know there is a lot going on in her head and in her little world - so I'm hopeful that one day she'll just "wake up" and start to suck again. Watching her while the speech therapist works with her on eating, or myself, is hard because of course we want so badly for her to just start sucking on the bottle, the pacifier, or me ... even if she only sucked for 10 seconds, it would be progress and she could build from there..but there is absolutley no sign of that at this point.  The speech therapist has worked with her, as have I.. and there is no learning curve on Meagan's part as of yet on the sucking.  So we will see what happens this week. 

Meagan did get her shunt re-programmed.  Since Thursday, her head circumference has been creeping up .. along with watching that fluid pocket, and her lethargic and fussy behaviors,  her NSG decided today to re-program the shunt and see if that helped. We will re-evaluate on Friday unless other issues come up in the meantime.  Hopefully this adjustment of the shunt does help and she becomes a bit more alert and gets her feeding skills back.  I'm hopeful that her shunt was the problem and the new setting will help her regain her sucking ability and personality. 

The nurse did already start to show us a little bit about Meagan's NG tube today and the doctor went over the other option, the G tube, with us as well.  We'll know more about our "coming home "plans next weekend, when we can sit down with Speech and the doctor and re-evaluate what Meagan has or hasn't progressed on as far as her sucking goes.  I don't want to rush her at all - but - I also don't want to prolong her stay in the NICU if it becomes evident her oral skills are just "not there" right now.  There is a lot to be said for her being home with my nurturing and just being in the normal routine of our family.  And who knows.. maybe that's the little change and relaxation she needs to have a lightbulb go off and start to suck.  As tough as it is for me to see her struggle with this, I do have hope she'll relearn somehow.. and I am just still incredibly grateful she's here, and alive, and with our family.  That is what really matters.

Holdin hands


Sweet baby.. I'm praying you start feeding on your own soon!


  1. Molly, do you think Meagan has learned that sucking increases pain in her head. I am assuming she may be living with a constant headache. Maybe this is a long-shot, but I lived for years with very frequent severe migraines. Sucking was absolutely the last thing I would have wanted to do. It would in my opinion make a difference in head pressure. Does that make any sense at all?? Praying for Meagan!

  2. Hi there, I have been out of town but praying for your sweet Angel! Have a blessed day and keep getting better every day Meagan! Hugs and prayers!