02.01 Evening Update (sorry it's late...)

Yesterday ended up being a rough day more so at the end than at the beginning.  

Penelope 1160grams (2lbs 8.91oz)       Lydia - 1510grams (3lbs 5.26oz)

Yesterday was a Penelope day.  She wanted everyone to be around her, helping her out.  She has been nicknamed the "drama queen" because of her big swings with her vitals.  Whenever she begins to alarm, either high or low, we get to the alarm and it stops right before we hit the button.  Also when she has a fit, she'll throw the biggest one she can.  For example, she hasn't had a big brady in a while but just an hour ago she had a real big bradycardia (not a good thing), turned a horrible shade of blue and scared the living daylights out of us.  But as soon as she came back, she was wide awake, looking around, in our minds saying "so...what's going on guys?" That type of drama queen.  So, we know already that we've got ourselves a handful of crazy coming when they get older.  Of other stressful things yesterday, Penny alarmed almost all day and I mean almost all day.  If it wasn't too high, it was too low or she'd be clamping down on her vent tube or at the same time her infusion would be done or IV fluid making noise.  It was a very ruckus type of day in the alarm world.  

Penny started on her steroids yesterday to help combat her BPD (bronchial pulmonary displasia), another name for chronic lung disease and it will run.  The Lasix was stopped today and replaced by another diuretic called Aldactazide because the Lasix has the potential to pull calcium out of her bones which she needs desperately right now!  She's still being given some sedatives to help calm her and not let her burn too many calories or extubate herself.  So far her second day with the steroids has been much calmer.  Her overal neediness has been much lower and her fighting fits have been better.  She did have to have a dose of Fentynal & Ativan tonight to help her out of one of her unexplained super, albeit sadly quiet, fits where she just scrunched her forehead and held her mouth wide open for a long time.  Bethany sat with her, trying to comfort her but to no avail which is when the nurse decided it was time to help her calm down.  She has been tolerating 2cc continuous feeds and pooping it back well.  She's still getting her TPN & lipids to help supplement her while she's still going through this phase.  

Lydia continues to grow like a weed.  It's really one of the hardest things about this situation.  One well daughter and one not so well daughter, literally with a turn of the head.  Lydia is taking 30 min. bolus feeds of 31cc's fortified milk.  Today, though, she started bottle feeding!  At 2pm Bethany fed her her first bottle and she took 6cc's of her 31 like a champ!  Still learning the suck, swallow, breath concept, she did have a few forgetful moments where she got "greedy" and continued to swallow without breathing, causing a few desats that were easily remedied by the ole bottle removal and gentle nudges to take some breathes.  She continues to make nice smelly diapers with her largest output yet being a 50cc diaper!  (that's HUGE and i was the lucky one to get it!)  I did get to feed her the evening bottle and she did about the same with even fewer desats!  That's a fast learner!  The nurses are proud and impressed with her capabilities!  She's also starting to get, by PO, her poly-vi-sol (a really smelly liquid multi vitamin) since she doesn't have a TPN bag anymore.  Her goals are just to sleep, eat grow! 

Specific prayer requests:

• Penny to handle the steroids well (no brain bleeds or brain damage - only long term will tell).
• Penny to continue to ween off the vent.
• Penny & Lydia to continue tolerating feeds with no NEC issues.
• Lydia to continue learning the suck, swallow, breath technique.
• For Bethany & I to continue taking these days in a gracious stride.
• For all of you to be immensely blessed by your continued, faithful prayers and follow-ups with us!  Thank you! 

On other, non baby news, we had a tweetup (slang for when people who use the social media format called Twitter, get together) with the cool PR people Amanda & Melissa yesterday.  For those that don't follow the crazy world of social media, Twitter is a short form, "micro-blogging" tool.  Through my tweeting about it, Amanda (@lebonheurchild) started to keep up with what was going on here in the NICU and wanted to stop byto put Twitter name with family.  We had met Melissa previously when the girls first got here together so it was nice to get to meet up with other folks that help get the LeBonheur name out and about, who tell the stories of families that are helped by LeBonheur.  If you're on Facebook, you can "Like" them here. Amanda also brought us these cool heart luggage tags that are currently room accessories until the girls have their own rolling bags.  Thank you Amanda & Melissa!

                           

We love you all!

The Chus