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 machine to turn off 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 bradycardia (not a good thing) in a while but just an hour ago she
had a real big one, 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. 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 pump making noise. It was a
very ruckus type of day in the alarm world.
Penny
got started on her steroids yesterday to help combat her BPD
(bronchial pulmonary displasia), another name for chronic lung disease. The Lasix was stopped today and was 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 to keep her from burning
too many calories or extubating herself. So far her second day with the
steroids has been much calmer. Her overall neediness has been much
lower and her fighting fits have been better. She did have to have a
dose of Fenotynal and Ativan tonight to help her out of one of her
unexplained super, albeit sadly quiet, fits where she just scrunches
her forehead and holds 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 and lipids to help supplement her while she's 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 minute 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
breaths. 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 going IV anymore. Her goals are just to sleep,
eat, and 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 and Lydia to continue tolerating feeds with no NEC issues.
- Lydia to continue learning the suck, swallow, breath technique.
- For Bethany and I to continue taking these days in 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 and 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 by to 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.
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 and Melissa!
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