grace

 i made bbq chicken pizza for the first time on friday and caitlin made herself a personal pizza.  i set the table, rushed around and once i saw john & caitlin had come to the table and john was waiting to say grace, i quickly sat down and closed my eyes to join him in praising the good Lord for what we have and praying a blessing over our food.  i opened my eyes while John was praying and saw this and couldn't contain myself:

we all have our little tricks for entertaining the babies....this is John's

Good news at the ChIRP appointment

ChIRP = Children's Intestinal Rehabilitation Program

I took Ryan to his appointment today and learned a lot of new things:

#1) Ryan is a whopping 11 pounds 11 ounces and has gained 47 grams per day since the last appointment.  They wanted him to gain just 25-35 grams per day.

#2) This means the next prescription for TPN will be even lower--they are decreasing the TPN calories by 15%--this is considerably fewer calories than the original TPN order upon his discharge from the NICU when he was only 7 pounds--more baby steps toward getting rid of it!

#3) Ryan is doing this with only 111 kcal per kg per day (from gut + IV combined)--most short gut babies need 130-150 kcal/kg/day to achieve good weight gains. so he is doing great--all the clinic staff are thrilled with these numbers.

#4)labs look good.  total bilirubin is 0.4! (it was 17 not too long ago). only thing is continued anemia and possibly some continued vitamin D deficiency despite our vit D supplement.

#5)Ryan is now able to be off the TPN for SIX HOURS PER DAY! possibly even longer if his weight gain is steady over the next few weeks. So he will be TPN-less from 3pm-9pm each day (might we even be able to go to small group as a family?  we shall try!  another step toward normal!!!)

#6) we are getting started doing an ethanol lock on the central line.  I'm thrilled about this and have been asking about it for quite a while and Ryan is finally big enough to do it.  this is a relatively new technique and hopefully will decrease Ryan's risk of a line infection.

#7)Ryan can stay awake for 6 hours in a row...though he is totally not happy doing so

#8)Ryan likes maroon 5.  who knew?..really only 'Harder to Breathe'...so we played that 5 times on the way home.

uncooperative

yet another attempt at a birth announcement photo.  clearly, Ryan was trying, but Nora just made a joke of the whole photo shoot--stinker.  some of the pictures are too cute, but nothing I can use....yet.......i'm still hoping.  maybe i just need to learn how to use photoshop.

neither cooperating:
neither:
Ryan cooperating:
neither:
neither:
neither:
neither:
neither:
Ryan cooperating:
Ryan's kind of cooperating:
neither:
neither:
neither:
neither:
would've worked, but the arm got in the way...it has a mind of it's own:
neither:
neither:
neither:
neither:

cooperating, but it just didn't work out...
neither:
neither:
ugh, the pacifier! otherwise it may have been a contender:

turned into total rebellion (big sister also uncooperative with the hand):

Playing babies

I gave up on trying to get a birth announcement picture for a while.  it's frustrating (more on that later), so I just took this video instead....I have about 20 seconds worth of space on my camera disk, so these are short movies.  5 months old today.  Caitlin and John were playing Memory in the background.  I wish I could mute out myself saying "hi you guys" about 50 times, but oh well.

Ryan heart mobile

ryan woke up at 5am with a dirty diaper and a HUGE smile.  mid-diaper change, he saw his beloved mobile and got really excited and chatty and kicky.  nothing too exciting, but I was thinking that since I can't remember very well all the things Caitlin did when she was a baby, i am going to start taking more videos of the kids, so since he was in such a good mood, I thought i'd get a quick clip.  here's happy Ryan...

what are we doing these days

John and Caitlin are up north on vaca and I'm watching the clock until 11:30 when I need to change Ryan's feeding bag before I can go to bed for the night....so, it's been a while since I wrote about what each one of us is up to  and since I can't keep up my journaling, this is a good time...

Caitlin: is at a really fun age.  wakes up every morning as asks us "what is the plan for today?" (occasionally asks "what is the dealio for today").  loves playing outside.  loves loves loves her daddy.  is very snuggly and always asks me if I'll snuggle with her--this makes up for her first year of life when she was not snuggly.  loves "learning time"--is learning about coins and some simple math as well as working writing letters and learning numbers beyond 20.  loves to tell us that we're driving too fast.  loves to play in the water.  still requesting Christmas songs in my car.  everyday asks if it's Wednesday b/c on Wednesdays she goes to Ms. Jamie's all day to play with Eliza and she sooo loves it.  still addicted to her "dissy."  still sucks the first two fingers when tired. loves PBS kids website and learned how to use the mouse about 2-3 months ago.  tells me that her yellow Banana Boat sunscreen face stick smells like lemonade every single time we put it on (it does not smell like lemonade).  Loves her brother and sister and is an awesome helper--helps with pacifiers, diaper-fetching, bouncy bouncing, entertaining the babies.  Told me that she wants another baby brother and baby sister (um, no.).  Is quite sure she is going to marry Ocean (after being disappointed about not being able to marry daddy).  Now every story about when she gets older starts with "when I grow up and marry Ocean..."  One of those stories wisely ended like this "...I'm only going to have one baby.  so that I don't have so many people to take care of." (smart kid).  Also said that when she has her baby, she's going to make sure it stays in her belly a long time and gets really big so it doesn't have to have any tubes (like Ryan).  Also, when she grows up, she is building her own house.  but don't worry because daddy can help build her house and we can live close by.  she's also just starting to become a back-rub mooch like her mom.  She has changed Nora's diaper twice nearly unassisted.  Still will not eat chicken nuggets or grilled cheese.  Though is starting to become more adventurous with eating.  Favorite foods: PB&J, ravioli, mac&cheese, olives, any fruit, cheese, and milk, milk, milk. Caitlin is very sweet and so much fun.

Nora: is really such a beautiful baby.  i swear, i could stare at her all day.  she is full of smiles and when she gets excited, she squeeks.  her cry is more of a high pitched whine and you can tell she's a girl by the way she cries.  she's really starting to watch the toys in her play gym and  hold eye contact for longer periods.  her head control is getting great.  she's pretty sensitive to sound and sudden movements and any scare will have her in screams and tears in no time--and, oh, the pouty bottom lip is too cute.  she took a bath today and was really calm throughout for the first time.  very easy baby--certainly the easiest of the 3 babies I've had.  Currently, goes to bed at 7:30pm, I feed her at somepoint between 11pm-12am while she's basically sleeping, then she goes back to bed until 5ish.  She sleeps a lot.  Takes a nap between every feed during the day for 1-2 hours at a time.  only stays awake for 45 minutes or so at a time.  hates the carseat, the eye doctor and going to Ryan's appointments with us.

Ryan: is much much more calm than when we first brought him home (but still has his moments).  He is so handsome (takes after his daddy!).  He has increased his G-tube feeds from 13mL/hr 6 weeks ago, up to 24 mL/hr now and he's doing ok tolerating things and he's getting BIG.  When he is in a good mood, he is super smiley and busy.  He kicks up a storm (he reminds me of Caitlin in this way) and waves his hands in delight when he smiles. He still loves his toys.  He will hold eye contact for a long time and listen intently when spoken to sweetly.  Sleeps solid from 8 or 9pm until 6 or 7 am.  He loves his bouncy seat.  He loves his IV pole and watches it fondly and smiles at it all the time.  Is very chatty when he's happy--lots of "goo"s and "guh"s--very cute (Caitlin never did this, so this coo'ing is new to me).  hates his sponge baths.  still no hair.

All by herself, i promise

Kay, for real, Caitlin drew this totally unassisted.  She went outside with John after dinner tonight. John was shooting hoops and Caitlin was doing sidewalk chalk.  alone.  I came outside to tell John about this amazing coupon deal, yes I'm that ridiculous and he thinks so too, and I saw this obvious bunny and asked Caitlin if daddy did it.  "No, mama, i did it myself.   it's a bunny."  obviously it's a bunny!  wow!  that's the first non-stick-figure she's drawn!  proud mama moment.  not that I don't appreciate all the more abstract art she's done until this moment....but, it's such a bunny!

THE 30 DAY SHRED

Caitlin gets an hour of "screen time" each day--either computer activities or a DVD--she can choose.  Today, she chose to do The 30-day Shred.  Ryan watched intently the whole time.  Jillian Michaels would be proud, huh?

RANDOM PICS OF THE BABES

CONTRAST

THEN.....4 POUNDS 14 OUNCES (4-24-09)

NOW....BIG (11ISH POUNDS)...7-9-09

Nora

Our little Nora is such a big girl--she is nearly exclusively breastfeeding now and growing like a weed.  She is a very happy little girl when she is awake, but she prefers to sleep...a lot.  probably because she is growing so so so much.  After being home for 7 weeks, she'd doubled her discharge weight and was up to 10 pounds.  At discharge, she was in the 5th percentile for her adjusted age (4 pounds 14 ounces at 36weeks6days)--at her four month appointment she was 9 pounds 11 ounces, the 50th (F-I-F-T-Y!!) percentile for her adjusted age of 4-5 weeks old.

She is all smiles and seems to giggle occasionally.  Now, it's about 6 weeks after their due date and she is doing all the things a normal 6 week old would do.  She had an evaluation from "Early On" to assess her development due to the low birth weight and she scored normal for a 1.5-4 month old in every category.  Her eyes are now healing OK--she lost a bit of her peripheral vision due to the laser surgery in her right eye, but otherwise, her left eye is resolving and she won't necessarily need glasses.  When we went to our last pediatrician appointment--her 4 month well child visit--, she said Nora doesn't need to come back until her 6 month well child visit, so she is no longer being monitored for her weight gain and is on a normal baby pediatrician schedule.