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.

unhooked

Ryan is off his TPN for 4 hours each day.  This adds a bit more to our chaos as I have to now  disconnect him from the line then flush his Broviac line with saline and heparin at 5pm, then check his blood sugars twice while off the TPN before reconnecting him to the new TPN bag we make at 9PM.  But it's cool b/c he can also be disconnected from his continuous feeds at 7pm---SOOOOO, from 7-8pm, he is totally unhooked.   First time this happened was Sunday evening and he was pretty angry about it at first...

And I took him outside to watch daddy play basketball, but he wanted to come back inside.  Then daddy hung out with him which made him so happy...

He got a tour of the backyard (beyond just the deck) and on his third day cycling off TPN, we went on a family walk...Nora in the Bjorn with John, Ryan in the sling with Jess and Caitlin pushing her baby Stella in the play stroller.  It was all very....normal.  then we played "I spy" on the deck with Caitlin, which was all kinds of hilarious--then it was 8pm and time to hook Ryan back up to his feeding tube (BOOO!).  but it is nice to have him off the TPN for a short while each evening.  His blood sugars are holding really steady while he's off he TPN and we're hoping he can be off for longer periods of time but I'm not sure how fast these things happen or how he'll tolerate things.  He's up to 19mL/hr on his continuous feeds (was at 13 mL/hr at discharge) which is about 60% of his total calories.  Bilirubin is <1

Daddy multitasking....(rocking one in the bouncy with the free foot is how we're getting by these days)

Smiles all around

First the big girl...

(who, when I threatened to cancel our trip to the park yesterday when she wasn't getting into her carseat as directed, replied "that's not the worst thing that could happen.")

Then the little girl (who is also BIG now--gained 5 pounds in 2 months since being home and is now TEN POUNDS!!!)--who's been full of smiles this week...

Then the smiley boy, who also started smiling this week...

tummy time, showing off his strength...

these babes need to work on growing some hair!

The Life of Ryan

Here's the low down on Ryan's business---he is not a happy camper, generally.  Right after his reanastomosis surgery he figured out hungry in a big way.  and he is hungry.  and mad. and we're stuck giving him continuous feeds into his g-tube (up to 17 mL/hr with plans to go up to 18 tomorrow!) which doesn't satisfy his desire to have a full belly.  He LOVES his omeprazole and loperamide that he gets to drink by mouth--like dessert....you give him a little drop and he shoves his hands in his mouth and rubs the med all over his face as if to bathe in it it's so good.  it's adorable (and sad).  He doesn't cry like a normal baby, he ROARS--like if a lion cried, it would sound like Ryan when he cries--it is deep and loud and scary.  He is still super strong--holds his head up like no problem--looks all around the room.

otherwise--he got his g-tube changed out to a button 2 weeks ago and though it looks better and is easier to maintain, his body doesn't like it as much and we are trying to come up with ways to deal with a reaction he's having to the button--otherwise, his Broviac line is still looking good despite it being placed directly in the poop-path.  

A few things make Ryan happy:

---this particular hold (which is causing his right side of his head to be flat)
--sucking on things (sometimes--sometimes he just gets even more furious like he knows we're trying to pacify him and he's hungry darnit and knows when he has a bottle and when we are trying to give him a pacifier)--here he caught his thumb..
-being outside (plenty of times, he's raged and when we take him outside, he settles right down and falls asleep)
--long conversations with nana

-and this stupid mobile which he will stare at for a long while (and which made me cry the 3rd day after he was home b/c I could not make him happy, but if i placed him in his pack-n-play he would happily stare at the mobile for an hour---he likes me now i think though)

oh, and of course his little 17mL bottles that he can take every 3 hours make him happy for the 12 seconds it takes him to drink them.  then he is mad again.  but it is getting better...the past few days he's had more moments of contentment.  he smiled at me ON PURPOSE (yay! finally!) yesterday and today and seems to be comforted by me, finally.   the only good thing about him having continuous feeds is that he sleeps through the night (of course, we don't because there's Nora).

Doesn't love the swing, but will occasionally sit there and look around the room--also like to sit in the bouncy seat and stare at his IV pole.  Ryan is great at eye-contact and tracking objects.  When he is calm, he'll just look at me for so long.

This is what cute looks like (also, miniature version of John i think):

The babies don't seem to know each other--I keep placing them next to each other when I have the chance but one or the other seems to freak out (here Nora was in between shrieks).  

update: after CHIRP clinic today--9 pounds, AND we are going to let him be TPN-free for 4 hours each day! (assuming his blood sugars are OK while off the TPN)