Monday, September 28, 2009

The parents this week


-we have watched 2 movies this week together ...and... (drumroll, please)....gone out on 2 dates. Thanks to our au pair, INNA, we are trying to get back to normal.  next up: mom returns to work (I hope).

babies this week

They are working on their balance, playing together and rolling.  I have managed to walk away from both of them, at separate times, while they were practicing sitting (which they can only do for about a millisecond) resulting in them each faceplanting hard into the floor at full speed.  I've given up on the Mother of the Year award pursuit a while ago.
gotta love those sweet sticky-outy ears of Nora's--same ones Caitlin had in her tiny baby phase.

They are both getting ready to roll back to front...spending lots of time on their sides and starting to reach out to things, so the motivation to move is beginning.  Should be plenty of fun, especially with the g-tube cord attached to Ryan.  I have vivid memories of Caitlin rolling around the floor at lightning fast speeds--if Ryan does the same he will surely pull that tube out while making a cocoon for himself with it.  They are both tugging on Ryan's gtube all the's often in Ryan's mouth.  We have knocked the iv pole (currently used for the gtube feeds and pump only) over twice this week by tripping over it, which pulls hard on Ryan's gtube site, causing great pain, so that will be retiring soon and replaced with a simple backpack on the floor--hopefully easier for everyone.  

Ryan's second-chance weigh in is this week, on Thursday--he fell short last time gaining only 13 grams a day when he needs to gain more like 20ish grams a day-- so we are praying for big gains and increased tolerance of his formula--however, we are stuck again, unable to increase his food until things improve.  44ml/hour is pretty good though--35 ounces a day--not sure how much of it he's absorbing, but it's a good number.  we are praying and hoping for the best.  It's been 4 weeks off  TPN!

Caitlin this week

Caitlin made this cute bear project with Inna, our au pair:

Got dressed herself as usual:
Made this beautiful art project:

Me: that's an awesome butterfly, Caitlin!
Caitlin: it's an elephant.

Tuesday, September 22, 2009

..and also....

WE HAVE WEIGHT GAIN!  not much, but Ryan gained 2 ounces over the past week, so at least he is going in the right direction--15 pounds even--still heavier than his little sister.  I haven't talked to anyone from the clinic yet to see what their expectations are of him so I'm not sure if this is enough gain to get the IV line out of his leg or if they'll want more weight checks before they do this.   The rice cereal has really helped us and has allowed us to increase his rate of formula again, so that's been key---hopefully we can continue to go up. (Thanks for the prayers, BEN!)  Regardless, we are still waiting for a few more results from the lab tests that were drawn yesterday...

Monday, September 21, 2009


IMPRESSION: 1. Unremarkable ultrasound of the abdomen. Normal color Doppler of the liver and spleen.

(there was no number2)

Tuesday, September 15, 2009

so far so good....2 weeks without TPN

quick TPN-less update:
--labs last week were good. no signs or symptoms of dehydration.

--no weight loss so far.

--no weight gain either, so now we pray he can gain some weight over the next week 
(still at 14 pounds 15 ounces)

--formula up to 40 ml/hr

--doctors are ordering a few tests including an abdominal ultrasound to try to figure out why Ryan's alk phos is so high--all other tests have come back normal and all his liver labs are normal now I'm going out of my way to get these tests done this week.

--so a few more tests and some weight gain and then the Broviac line can come out.  The line's been giving me some trouble lately (like yesterday I had to take an unexpected trip in to the surgery clinic because it seemed to be starting to clot off--they instilled some tpa in the line and it is better now)--so I want it, yesterday.   But of course, we want to make sure he is thriving off the TPN first and we haven't established that yet.

--to help firm up what's in his diaper, so that we can advance his feeds, we have started rice cereal.  he pretty much hates it (maybe it was the princess spoon?). we may have to sneak some in his bottle until he learns how to eat a bit better.  we'll see.

Hi Dr. I!

I did have to reassure Ryan and Nora that they were not going back to the NICU when Dr. I came to visit.  We had a great time with Judy, who worked very hard leading the NICU team to save Ryan's life on 3-18-09 when he got so sick.  It was a lovely reunion....complete with Ryan leaking formula all over her....but what would a day without a pump or tube malfunction be around here?

Comparison pictures...


Great-Great Aunt Patty--always a good sport

Sunday, September 13, 2009

New Twin Stroller*

*Not pictured: athletic mom with the super hot bod**

**cuz she don't live here

Monday, September 7, 2009


--Daddy was telling Caitlin a story about how he once tried to go cross country skiing on downhill skis and how he ended up with blisters and sore feet...
  Daddy: the moral of the story is if you want to enjoy certain activities you have to be you can't play baseball with a tennis racket.
  Caitlin: and you can't play HungryHungryHippo with hippos that aren't hungry.

--Me: it's time to wash your hands
  Caitlin: (ignoring me)
  Me: Caitlin, it's time to wash your hands
  Caitlin: I don't want to
  Me: Caitlin, It's time to wash your hands
  Caitlin: you're screwed up.

--Caitlin convinced me to play "Old King Cole," on Thursday, a game she made up after hearing the rhyme.  I thought we should make crowns to go with the game, so we got out our paper and scissors and crayons and tape and made some sweet pink crowns.  Then we went onto the deck with our crowns--Caitlin looked me up and down and said "You look like Old King Cole and I look like New King Cole." 
--(by the way, the rest of the game consisted me being demoted to "old king cole's chef" and of her laying on a lounge chair on the deck barking out orders to me like  "Please bring me some spaghetti, old King Cole's Chef.")

--Today at snacktime, she spontaneously announced "The Rules of the Day" as follows..word-for-word as I scribbled them down on a napkin so I'd remember...
"Number 1--treat the babies nice.  Number 2--I love you. Number 3-don't ever go by hippos cause they have sharp teeth.  Number 4--don't get markers on the table.  Number 5--treat hungry hungry hippos nicely.  Number 6--eat muffins."

Sunday, September 6, 2009

All. Day. Long.

..and sometimes at night.  Nora has found her voice and her thumb.  She is so interested in them both, that she now wakes up in the middle of the night to yodle and suck her thumb.  of course, she then realizes she's hungry, so instead of sleeping through the night, she yodles, plays with her thumb, then has to nurse to get back to sleep.  fun times.  

Wednesday, September 2, 2009

Nuff said

see The Nutrition Plan?  



this is a trial basis for 3 weeks.  if he gains and does OK, they will take him to the O.R. and get that nasty Broviac line OUT!  Let's pray he flies!!!!