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"
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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?"
