Sunday, December 20, 2009

Raggedy Ann

Caitlin has some kind of allergy right now.  and I hope it's not what I think it is.  Yesterday, at our family Christmas party, she put on a new dress (second hand--and I hadn't washed it. I swear this is not normally OK, but it was her Christmas dress and it was our party and I'd forgotten and I was choosing my battles, so she wore it before I could wash it) for Christmas and proceeded downstairs and put her fingers in some peanuts and wiped her face.  About 1 minute later her face is all red, her right eye is swelling and she's itchy.  grand.  we load her up with benadryl, which she was all too excited about, and do the same before bedtime b/c it's stopped getting worse, but is no better.  At bedtime, she is drowsy and having meltdown after meltdown--I mention to John and Caitlin both, that it's probably the benadryl making her both tired and completely out of control simultaneously, which is a lovely combination when you're three and overexcited with Christmas anyway....Caitlin replied "mama, sometimes medicine helps you feel worse."  so true, my dear.

So today, she woke up with the swelling gone, but with much the same red circles on her cheeks, looking very much like my childhood Raggedy Ann doll (but cuter and a lot sassier)--kind of like a combination of this and the last picture on this page.
--I'm praying it was the foreign detergent on the dress that made her breakout (she had a shirt and tights on underneath protecting the rest of her) and not the peanuts as peanuts are her sole source of protein and fat these days. Please join me in praying our beloved peanuts are still safe.

Friday, December 18, 2009

Updates

just a few minutes here as we're getting ready to leave for the Lego exhibit at Henry Ford Museum in a few (yes, I'm taking all the kids....yes, I'm insane)

RYAN: started waving 2 weeks ago, says "da-dah" all day long.  at a very clingy phase right now, if he's not held, he's crying and fussing-I can sometimes put him in the highchair and he'll be happy there for a while, but if he's low to the ground he's mad.  There are exactly 4 people in this world that he is comfortable with (caitlin, mom, dad, inna. favorite person = daddy, hands down) and he falls apart if anyone else gets near to him (he tolerates Nora and sometimes they even babble together, but usually he needs one of us from the 'inner circle').  about a month ago, went from loving his baby food to hating it, so we're struggling with that.  Is 19 pounds 1 ounce at 7.5 months (adjusted) which is pretty much humongous and amazing.  He is wearing size 12 month clothes easily right now.  Still sleeping thru the night for 12 hours. Rolls from front to back faster than you can set him on his belly and will scoot a bit with his feet if you prevent him from rolling, but rests on his elbows, not his hands, so has some way to go with arm strength.  Completely uninterested in rolling from back to front.  Could sit up if he wanted to, but won't--he can balance if he's distracted, but gets pissed that he's not being held (remember he's a cling-on right now) and throws himself backwards.  Oh, and remember how last month I posted that he had a tooth, well, he had SEVEN and he took it like a champ (four across the top and three across the bottom simultaneously). Hates baths and makes it known, so I'm still doing sponge baths b/c he doesn't seem to mind them.  He's fussy right now but easy to please as long as you have available arms/hip to hold him all day :)  Right now we are working on getting him off the gtube pump during the day and just running whatever food he doesn't take during the day, at night when he sleeps.  Trying to train him to be hungry which he never is b/c he's used to being pump fed all the time.  Praying for normal here!  Whenever we go out to the hospital (sorry but that's pretty much the only place I take the poor boy) he gets lots of attention--comments on how handsome he is and how beautiful his big brown eyes are.

NORA: is a petite 16 pounds 8 ounces at 7.5 months (adjusted), which is still about the 50% percentile for her adjusted age, but the contrast in size between the two babies is really profound right now.  Sitting up independently for the past 2-3 weeks and prefers that position to laying on the floor.  Still will not roll in either direction and basically pouts and yells (not cries) if you put her on her belly.  Also, sleeping thru the night and saying "dah-dah."  It's funny how two babies can make the same sounds and it is so different to hear it from each kid.  Just got her first two teeth last week (bottom two) and took it like a champ.  I love the baby-with-just-two-bottom-teeth look.  She has a very sweet disposition and doesn't seem to mind being walked away from or playing by herself--except when you are putting her down for a nap because she will RAGE.  She squeals with delight and starts pumping her legs when she sees me after a nap or first thing in the morning and pretty much always smiles unless she's tired.  She is a very happy girl.  And she smells like I imagine heaven smells.  I wish I could bottle it, b/c I could make millions.  I spend a considerable amount of time each day inhaling the top of her head.  
UPDATE: rolled back to front 6 times today (12-20-09)

Caitlin:
Holey Moley, do I love this age!  She is so articulate and says the most hilarious things.  She's really in to writing and drawing right now and is very good at it.  She helped me make most of our christmas gift tags and all my notes to myself on my desk have a big block "CAITLIN ONEILL" written across them suddenly.  
-We've been celebrating Advent by reading the Christmas Story pretty much each night and she has it memorized and "read" it to me last weekend and it was darling.  She put a pink blanket over her back and announced that she was Mary with Jesus in her belly and they were travelling to "the Bethlehem world." The she switched to a brown blanket and made a little nest and said she was baby Jesus in the manger now that she travelled to "the Bethlehem world."
-The other day she was looking at neighborhood Christmas decorations and saw a nativity scene and proclaimed "There's Mary, Joseph, baby Jesus, Bambi and The Great Prince of the Forest!"
-She is very curious and is constantly asking about things like how are cars made? How do Firemen help when there's a fire?  How does a police officer stop your car?  What makes a police officer stop your car?  What's jail like? What does "government" mean? what does "anxious" mean? recently asked about dying and what it means to be killed (thankfully John got that one! phew!) If you were a mommy with no nipples, how would you feed your babies?
-She's gotten fearful of creaks in the house at night and I've been talking to her about it and encouraging her to pray when she's scared.  Yesterday she told me that when she prays when she's scared, she asks God what the noises are and he'll tell her whether it's mommy in the shower, daddy with a hammer or Inna clicking the mouse on the computer.
-She's really interested in dinosaurs now and absorbs everything on Dinosaur Train like a sponge.  She has corrected me a few times re: dinosaur identification and will tell you the important things about each dinosaur like the ornithomimus are great runners, corythosaurus had a crest on their heads, velociraptors had feathers, etc.
-And finally, I want to note that she is at a huge mommy stage right now.  Always requests me to put her to bed, snuggle extra with her in the morning, etc.  It's been since I went back to work about 5 weeks ago, but I'm not complaining--I love the snuggles too.

Monday, December 14, 2009

Dedication






Inna's amazing custard cake...mmmmmmmm.....

Saturday, November 21, 2009

New Pictures

Inna made these awesome pierogie-like items which I don't know how to spell, but they were wonderful.  She made over 100 so we have many many in the freezer. mmmmm.  not sure what happened to the pictures of Inna though--I'll try to update with those when I can.


Ryan's "mugshot"
Ryan's favorite toy:

Nora's bathtime....I never took one of her first bath, so here's my do-over on that:



Duelling exersaucers:

Sunday, November 8, 2009

Ryan got a tooth today

I didn't even know he was teething. He was just chewing on my hand and I felt a little razor and..sure enough! just one.  lower right/middle.  you can barely see it.

just wanted to log that for when i do his baby book :)
(still no hair though)

Friday, November 6, 2009

Halloween - part 2: Saturday Oct 31

Snow White with a Bumble Bee, Eve.

Caitlin spent  most of the evening playing all the little games.  She was shy for a minute then ran around from game to game without reservation.  She had a blast. I just ran around after her with the camera.  Daddy stayed home with the babies.



Inna and Caitlin
Had to snap a picture of Ocean in his "Soccer Robot" costume.  Iris was a cow.  
Caitlin and Eliza were mesmerized by the "balloon buffoon"  - later, Caitlin got a super cool giraffe balloon.
She gets her golf skills from her mama.



Halloween - part 1 on Friday, Oct 30

We started the day on Friday trick-or-treating in downtown Ann Arbor with the Bott's.  It was great fun.  Here we have Roo, Kanga and Snow White.



Later, on Friday, Eliza and Caitlin went trick-or-treating in downtown Belleville and we had a big spaghetti dinner at our place.  Then John and I went back to the Botts for some Euchre.  It was a fun day.



Nora's first bites

so i'm doing this for the sake of her baby calendar which has been sitting along with Ryan's in the laundry room for the past 6 months or so...I haven't taken it out of the plastic.  with Caitlin, i had it out all the time and updated it daily with milestones or whatever i felt needed to be noted.  you can tell I'm no longer a first time mom.  So, once I get around to getting those calendars opened, i'll be going backwards thru the blog and logging everything.  

Tuesday, November 3, 2009

Crazy.

So I took Ryan in for a weight check today.  He gained another pound in the past 2 weeks--17 pounds 11 ounces.  I'd sort of suspected he'd have great weight gain, because my back is hurting.  I got a call from the ChIRP clinic dietician shortly thereafter....she said 

"his weight gain is excessive." 

seriously.  I could never have imagined we'd be at the point that we are overfeeding him. amazing.  a miracle.  thanks, God.

So, we have been asked to decrease his caloric intake significantly.  This is overwhelmingly awesome.  Ryan currently gets  just over 30% of his calories by bottle and the rest go in thru his G-tube.  It will now be about 50-50 as we can shut off the g-tube pump for abou thalf of the night.  Now we begin the process of growing less dependent on the g-tube. wow.  when people ask me how long Ryan will need the gtube, I always say something like  "years, but it's not really a big deal." This is because as long as that IV was off and Ryan's liver wasn't being poisoned by the IV nutrition, I didn't care about much else.  And, truthfully, I didn't think it was possible to wean Ryan off the gtube.  I figured he'd always be dependent on getting a ton of calories overnight via the gtube--maybe I've been conditioned to be a pessimist due to the feedback we were given while Ryan was in the NICU.  Well, today, I have new hope.  Something I couldn't have even prayed for b/c I just never even thought of it.

Anyway...I'm rambling, but I'm just overwhelmed with thanks for this miracle. our God is amazing.

Thursday, October 22, 2009

my girls



ChIRP clinic yesterday

   Ryan's weight: 16 pounds 12 ounces (10th percentile for an 8 month old-actual age. above the 50th percentile for a 5 month old-adjusted age)--doing great, gaining well over the minimum just on enteral feeds (belly feeds, no iv nutrition).

Docs spent most of their time playing with Ryan, who had just woken up from a 2+ hour long nap and was in great spirits.  We are going to start to work toward getting his time off the G-tube up so that when he becomes more mobile, we have less cords to deal with.  He had to get blood drawn without his Broviac line and it was pretty awful, but short and he's totally over it.  He did great.  We don't go back until January.

Friday, October 16, 2009

Bye Bye BROVIAC



We love the broviac for keeping Ryan alive and remaining infection-free.  We hate the broviac for what it stood for: necrotizing enterocolitis, infection risk, loss of normalcy, crushed hopes and expectations, the looming liver failure that would happen if he remained on the intravenous nutrition long-term.  not to mention it's ugly and required a ton of maintenace:



By a true miracle, Ryan is able to thrive without the intravenous nutrition which was provided by the Broviac line--this was beyond anyone's wildest imagination, truly.  We are so thankful.  The Broviac line came out on Tuesday October 6th after Ryan had gained great weight for the 10 days prior--it was also showing signs of clotting off, so it was perfect timing as it looked like he might need a new line anyway if he were to continue depending on it.

We took him in for surgery at 7:45 that morning.  John took a 1/2 day off from school.  Nora came with because her food supply (mama) went.  I was really worried that Ryan would freak out since I had to shut his feeding pump off at 4:45--he did great.  he was awake for his pre-op assessment and then fell asleep in John's arms at about 7:30, pacifier in mouth.  

The surgery was for the removal of the Broviac, a replacement of his Gtube, which has been giving us trouble lately, and cauterization of some problematic granulation tissue around his Gtube site.  All went well.  Everything went so fast that they just needed to use the gas mask to get him to hold still--no breathing tube or anything.  About 20 minutes after they took him back, we were called in to get him in recovery....I could hear him down the hall.  He was furious, panicky, hungry but quickly calmed down with a bottle and some snuggles.  We were able to bring him home a few minutes later without any trouble....Gtube site looking much nicer and leg line-less for the first time since he was 3 weeks old.  After 2 days, we took the bandage off and a few days after that, the steri-strips fell off and he's left with just a small scab on his thigh.  it's lovely. and his skin can breathe now that the plastic occlusive dressing is off finally.

So one week later, Ryan got his first real bath.  Previous baths were just wash cloth wipes because the Broviac and it's dressing needed to stay dry at all times.  And, this boy needed a bath.  He was horrified at first but then settled in to the bath with the help of  a toy for a distraction. pictures are a bit yellow-y looking from the bathroom lighting.






Wednesday, October 7, 2009

baby boy giggles

video
we all love to hear ryan giggle.  he will giggle anytime he is roughed up--such a little boy.
Broviac line came out yesterday--I want to take a picture of his plastic-less leg, but it's got a nasty looking bandage on it for the next 2 days. Next up: a real bath!  I'm pretty sure he'll love it.

Thursday, October 1, 2009

Monday, September 28, 2009

The parents this week

NEWSFLASH:

-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 time...it'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!