11 August 2011

summer days keep on a rollin' by.

Ok, so it's been a while since I posted last.  A lot has happened since then and I can't even begin to try and catch you all up from last time and if you've been reading this you know that the real juicy updates are over at Bethany's blog, things like vent settings, CO2 levels and g-tube feedings, the good stuff.

This is hopefully going to be one of those semi-informative updates and not one of those sappy, emotional rambles I tend to take. Those often lend themselves to me staying up till 3am and not getting anything done the next day.... so, here we go.

Penny has been stalled out on her weight gain, for the third day in a row, and the doctors are going to up her formula amount to a paltry 75cc's. It's really for her own good, even though we want her to be more than 12lbs by the time she goes to prom, if we let her go to prom.  This plateauing is also the instigator for no more vent weaning. The less work she has to do breathing, the more she is going to gain and that's ultimately what we want, fatted calves... ha ha, get it... fatted cal.. nevermind.

Bottle feedings have continued and in an increasingly surprising way!  She continues to work with Speech Therapy and as of this morning took an incredible 35cc's by bottle! That's huge for a child that was intubated and sedated as long as she has and with as little time back on PO feed's. We're trying everything we can to stay away from oral aversions and since there's no need for intubation again, we hope that all things food and mouth related will be positive experiences from here on out. Her current infatuation with her hands make it difficult to get a bottle up to her mouth but once you sneak around them, she remembers that the bottle is her friend.

Like speech, she's also getting PT & OT and through learning about how to tummy time with a trach and g-tube, as well as teaching how to try and roll over with those, we realize our Penny's still our little fighter. She has great head control, tries to roll over to certain sounds, can turn her attention towards our voices and is learning to sit up un propped.  All of the physical aspects will take time to grow up and out of.  She's definitely behind here and so another already acknowledge benefit from getting the trach is the mobility that she now has. It's such a joy to be able to walk right in and pick her up out of the bed.

Now to our chunky monkey, Lydia, she continues to be a happy little baby. Sleeping through the nights, with little cries here and there from dreams of her toys not doing as she wants.  She's been eating well, napping in the afternoons well and continuing to gain strength.  Her little personality is starting to shine through and her little coy grins are infectious.  We love that the girls can spend time together and on the days that they are actually nice to each other, it's heart melting, which thankfully is more than none. I think Penny still has some animosity towards her for stealing all that placenta.  Lydia also recently had a PT and Speech eval and she is progressing nicely on her adjusted and actual age level.  It's hard for a lot of the doctors and nurses to believe that she was actually a preemie, seeing how big she is.

We continue to walk this unknown path with the gracious help of our parents, family and friends, constantly being amazed at the way God has been moving in things around us.  He's already opening doors to allow us to help others amidst this continued battle and that is humbling.  Bethany worked a rough budget for us the other day and we came up with $1 extra.  That's living off of one salary.  That's God's providence. I think He's teaching us, with our new family, how we can find unique ways to give back.  Bethany had to start work this week so the new challenges of keeping up with the sitters, the hospital and me while i'm on the road as well as helping her kids day in and day out are going to be interesting.  She, already, has the physical hand fatigue of signing all day long so when she's holding the girls, it gets tough.

That's about all I can think of to write about at the moment.  Thank you all who are continuing to follow us on this journey, praying for these girls and us. We're humbled and continually grateful.

Prayer specifics:

  • Penelope's weight gain
  • Continued development with bottle feeding.
  • After weight gain, continued hope to wean from the vent.
  • Muscle development and strengthening.
  • Mental development and strengthening.
  • Lydia to continue being healthy and growing.
  • For her to continue developing mentally and physically.
  • For Bethany to have stamina to make it through the work day and then come home to be mom.
  • For her spiritual and emotional well being while I'm traveling.
  • My spiritual and emotional well being while away, though less this month, it's still tough leaving.