30 January 2011

1.30 update with sneak attack Photo Bomb. Skadoosh.

Penny - 1170 (2 lbs 9 oz)               Lydia - 1540 (3 lbs 6 oz)

This morning didn't start the way we had planned but it was probably for the best.  Some of you must have been praying for rest for us because despite our alarms going off (multiple times) we still slept until around 11.  We were disappointed to miss church, but figure we were being protected from getting some awful bug from some well meaning hugger.

Alright, the news.  Not much new with Lydia today.  She'd eating well and pooping well.  Very well.  She's up to 29 ccs every 3 hours, which is just shy of an ounce.  Yesterday she had 3, count em, 3 dirty diapers.  We were so proud.  She's still doing well with the practice breastfeeding and loving kangaroo time.  She even gets regular kangaroo time with her daddy now, which is sweet sweet sweet.  The most exciting thing (for me anyway) is that because she has no IV or PICC line anymore, we can bring in our own receiving blankets to make her bed with so it's not the boring hospital ones all the time!  Some friends recently gave us some pretty girly ones so today her bed is in pink and purple stripes.  We joked about always dressing Lydia in purple because her name means "the seller of purple"...now we just have to find more purple receiving blankets!  

Penny is fighting as hard as she can.  Her chest x-rays show that she has what's called chronic lung disease changes, which is somewhere between preemie lung disease (which they both had) and full fledged chronic lung disease.  It's very common in preemies and is especially worsened when a baby is on the ventilator or oscillator for extended amounts of time.  Basically it is an inflammation in the lungs, and that inflammation draws fluid.  This is the fluid that is causing Penelope's CO2 levels to stay too high and her O2 saturation to drop regularly.  The first plan of attack is another round of diuretics (Lasix) to get the fluid off.  She got her second dose today and is peeing a good amount, and her CO2 has dropped a little, but not enough.  The next plan of attack is to put her on a low dose of steroids to treat the actual inflammation.  In the past, they treated with high doses of steroids for a long period of time and saw developmental delays as a side effect.  Now they use a lower dose and have seen no evidence of side effects, but there are few studies on it as it is a newer technique.  The doctor says that he's seen kids off the ventilator in 2 days after getting steroids, so naturally that gets my hopes up.   We'll just pray that she's one of those kinds of kids!  The good news for Penny is that she finally preceded Lydia on something.  She had 4 poppy diapers yesterday and her feeds are up to 2 ccs per hour! That's right...she's a champ.

Every day it gets harder to see her just laying there.  Every once in a while she'll get mad and turn all red and squirm around, but if she does that too much she ends up getting a dose of ativan to keep her calm.  Although some activity is good, our goal is for her to gain weight.  If she's burning calories by being mad all the time, that's counter productive.  When I look I her I try to make myself imagine chasing her around the park, or having tickle fights on the couch.  Keeping an eye on what the future holds for her takes the edge off of what she's having to go through right now.  Despite all of our intentional positive thinking, when I look at her I can't help but say "poor baby."  Nobody should have to go through this.

Specific Prayer
  • Penelope's "chronic lung disease changes" to clear up
  • continued healthy digestion
  • fewer desats for both of them
  • Lydia's suck/swallow/breath skills to develop
  • peace, wisdom, and patience for Jonathan and me.

Now for some comic relief...

(taken between 01.22 - 01.29)
"strike a pose, vogue"

 this is how Penny gets grounded when she tries to extubate herself

 "attack of the blob!!!!!"  

"goodbye cruel world"

The glowing foot is the O2 sensor....just in case you thought she was doing that on her own

"oooo....it looks cool from up here"
How could you not smile at that face                                 

thumbs up for hairbows and tummy time (first one in 2 weeks)

don't worry, her hair will grow back eventually

a little comfort time with mommy after Lydia's first eye exam...they said it didn't hurt...my FOOT!

Penny's post eye exam...we couldn't hold her though

"check out my new toy!  it's a ventilator!"

"reunited and it feels so goooood"

Jonathan's mom getting to hold Penny for the first time

bonding time with the grandmothers - that's 3 generations of girls (with Penny in the background)

Penny's starting to pack on the grams!

snuggles with Lydia

poor kids

bad hair day

cool new bed called the Z-Flo...maybe that'll be her DJ name "lil P-money and the Z-Flo"

Penny finally letting us touch her after many days...it was a sweet time

lil P-money's shoulder fuzz...got that from Uncle Justin

Lydia got her own Z-Flo too....she's still working on her DJ name

Lydia passed out on daddy

"chubby bunny... chubby bunny"

"say what?"

28 January 2011

1.28 Update

(by Bethany from http://iamknittogether.blogspot.com)

Penny - 1080 (2 lbs 6 oz)    Lydia - 1500 (3 lbs 5 oz)

Just a quick update on our relatively quiet day.  Penny FINALLY got moved next to Lydia last night while we were at home.  It was really wonderful to come in and find our two little girls closer together.  Lydia's been stable today and got her feeds increased again. She's at 28cc every 3 hours.   That's almost an ounce!  We had another date with the lactation consultant today and that went well too.  She's not ready for full breastfeeding yet but we're "baby steppin"...get it?  cause she's a baby?!...oh well

Penelope has been doing pretty well although she's still very very touchy.  Too much talking or much touching at all and she'll drop her sats (oxygen saturation).  I was really hoping to get to hold her today but the doctor wisely said we should wait a few more days for her to settle down.  The good news is she's off all of her antibiotics because her repeat cultures never grew anything. She's also off of her dopamine (which was helping her get some of that fluid off) and is still peeing well on her own.  The thing that's the hardest for Jonathan and me is that she still seems so uncomfortable.  Then again, you would be too if you had a tube shoved down your throat...not to mention missing out of the last 3 months of the best time in anyone's life!

Overall it was a pretty good day!

Specific Prayer:

  • Penelope's moving towards extubation 
  • The cause of Penelope's discomfort to be clear or go away
  • Lydia's moving towards breastfeeding
  • Both protection from NEC
  • Rest, Wisdom, and Endurance for us
Lots of Love and Appreciation

The Chus

P.S. There is shower being planned for the girls that will be happening on February the 13th.  They've threatened to beat me up if I don't mention something here to make sure all who wish to attend are able to.  If you would like more information just email me.  There, now they won't beat me up. ;)

27 January 2011

If this doesn't make you cry...

my cousin sent this to me about a series started by Pampers about Preemies.


It's very much what life is like for us right now... maybe we should do a video ;)

1.26 Uber Massive Photo Bomb! Kablam! (56k warning)

Yeah that's right... i used 56k warning 
Click on images to make larger
(pictures from 01.19-01.22)

Little Penny

 Lifting my crazy heavy daughter

 Holding Lydia after Bethany washed her for our first time.

No, I'm not happy about holding my baby.

The hoss of the two and still so tiny.

We know it's just gas but she makes some pretty awesome faces!


 Hair bow day!

Picture time with Penelope. Awake and looking at mom.

 Our tiny baby.

First day to Kangaroo without her PICC line!!  One step closer to wires free!

She's our escape artist... sneaking her way to the end of the isolette.

No paparazzi! 

Dear Jesus, may I have awesome hair, finger nails and for this stinkin machine to shove off.

First time for me to kangaroo Lydia!!  Overwhelmed by emotions right here.

Trying not to cry and smile.

Relishing in the newfound feeling of actually being a parent.

Close to being done and not wanting to let go.

My last ten minutes ended with a nap of course!