Saturday, August 29, 2009

Ryan this week


oh my, he is getting so big.  and just keeps getting cuter and cuter.  It would've been a really nice picture of Ryan and John, but I messed up.  Anyway, we are back on track with the poop situation after some monkeying around with his meds and increasing his formula again.  up to 35 ml/hour--this is about 28 ounces a day--we are getting there.  slowly, but we are getting there.  next ChIRP clinic visit is on Wednesday and I'm hoping we'll get some good news about TPN decreasing at that point.

We had our first post-NICU line infection scare this week (well, the doctors were scared...I wasn't).  Ryan was acting fine but had a runny nose and low grade temp last week.  His liver enzymes doubled out of the blue, so this could be indicative of either an upper respiratory virus or a smoldering line infection.   I was pretty confident that he was fine, other than the runny nose, since he's so happy and busy all the time, but they ordered blood cultures anyway.  So far, the cultures are negative.  The liver tests are normalizing and the runny nose has also stopped.  So, we think it was the virus causing the problems.

Otherwise, Ryan is really figuring out his hands but is still very much a wild man and needs a swaddle to help get to sleep, but every morning when I see him still sleeping, he's unswaddled with his hands out to the sides.  Hopefully soon, he'll be less crazy and we can stop swaddling him to calm him down.  He has the best belly laughs--this is such a treat for me since Caitlin never giggled at this age and Nora doesn't really either.  Ryan laughs and it is so so cute--he's really got a large personality for such a small baby. He sleeps much better--now 7:30pm until about 6:30am.  Always wakes up in a pool from all the fluid he gets overnight, but it doesn't phase him--he's super happy in the morning and very chatty.  kind of takes the sting out of the early wake up.  we are really enjoying him now---a totally different baby than the screaming maniac we brought home from the NICU 3 months ago.

***

Random thought/memory:  The other day John found an old post-it note on my desk from when I was pregnant with the twins.  I had written some baby boy name contenders on it from an Irish Baby Names website or something.  The names were: Keon, Ronan, Fineas, Dominick, Case, Quinn.  I have a faint memory of the discussion about those names.  I remember liking them all (I picked them out)--we wanted to stick with an Irish name but I worried they weren't mainstream enough to match the sister's names that we had narrowed down to: Claire and Eleanor.  John only liked Case, Fineas and Ronan if I remember correctly--we especially liked Fineas/Finn and Case.  However, none of them actually made it into our discussion the night the babies were born.  Nora was Nora without too much discussion, but we weren't sure what to name our boy.  The night they were born, the neonatologist came to talk to us and gave us updates on "Nora and your son"--so I felt like we needed to name this poor boy asap.  We had pretty much narrowed it down to Ryan Michael or Sean Michael--I liked them both.  I was leaning toward Sean--less popular, a form of "john," equally as Irish as "Ryan."  John liked "Ryan" better.  I remember how when Caitlin was born and we were deciding between "Caitlin," "Sarah," and "Rachel," and it was the day after the poor girl was born and yet she was still unnamed--John came into the hospital room that morning, glowing with the glow of a first time dad after a long day and night previously and pronounced that he was quite sure she looked like a Rachel.  To that, I said "no, it's Caitlin." and so it was.  Recalling that, in my post-twin-whirlwind-labor-emergency-stupor, I, very clearly and intentionally gave the baby boy naming task over to John.  I knew he'd do a good job (I secretly hoped he'd choose Sean).  He said "I really like 'Ryan.'"  And so it was.

In the end, Ryan is such a Ryan. It fits him perfectly.  It means "King."

Tuesday, August 25, 2009

Caitlin's First Camping Trip

Post from John:

This last weekend I was able to take Caitlin on her first camping trip with her friend Ocean and Ocean's Dad, my friend Phil B. We went to a campsite that Phil's parents keep an RV on for most of the summer, and they dock a pontoon boat on the lake nearby. Needless to say that camping with two very goofy three-year olds was bound to be entertaining.

Here is the kind of conversation that Phil and I would hear from the back seat: 

Caitlin: No Grandma Mary is married to Grandpa Larry!
Ocean: No, Larry is a cucumber!
Both:  A-ha-ha-ha-ha

Most of the time they entertained each other.

Mrs. B (Phil's Mom) was affectionately known as "Grandma" to Caitlin and Phil's Dad as "Grandpa," and they sure took good care of us--every meal, fun snacks, things to do for the kids, places to sleep etc. etc. I felt useless, but am extremely grateful for the respite. Here is a picture of the two of them with fishing poles (that Mrs. B bought) on our way to a sand dune that we all climbed (below).


Caitlin has been looking forward to tenting for years now, and she finally got her first real tenting experience. Of course, as soon as we got the tent up and mattress filled with air, Caitlin and Ocean had to go play on it--which turned into a wrestling match (pictured below).


There were a few wrestling matches over the weekend--all in good fun--but the Dads had to occasionally step in just to make sure things didn't get out of hand. Especially when they were in Mr. and Mrs. B's Rv:

Phil: (after hearing some screaming in the RV) What's going on in here?
Ocean: Caitlin was pulling my ears!
Phil: (assuming Ocean must have done something first) Well why don't you just both apologize to each other and make some better choices in the future.
Ocean: I'm sorry Caitlin.
Caitlin: Why is Ocean apologizing? He didn't do anything. 

Well, at least she's honest.

Anyways, we roasted marshmallows, had campfires, went boating, climbed dunes, went fishing for crayfish, played in the park and had lots of great camp food. Caitlin especially liked the many camp treats as evidenced by the picture below (note the chocolate goatee).

My only hope was that Caitlin would leave the weekend liking the whole camping experience. So, I knew we were successful when she told me that she didn't want to go home and she wanted to stay camping. (You mean instead of competing with two crying babies at home???)







Friday, August 21, 2009

The cat in the hat


...let us not forget our feline companions..who have coped amazingly well with basically being ignored for the past 6 months (sorry guys!)

More on the babies--6 months old




Nora and Ryan are doing the same stuff developmentally--most obviously this week is that they found their hands to be functional parts of their bodies rather than uncontrollable parts that hit them in the face over and over.  So, Nora is now sucking her thumb, which has lead to her sleeping through the night like a superstar (7:30pm ish until anytime between 6:30-8am)--no dreamfeed anymore, which means mom gets to sleep through the night too, for the first time since February.  Also, doesn't need to be swaddled anymore.  Much more vigorous with her kicking.  Starting to try to use her abs to balance herself.  Usually pretty happy still.  Doesn't coo much but has more of a squeek or a gasp when she is happy--sounds like a chimpanzee when she gets mad though (usually only when she's sleepy).  Full of smiles.  Very easily startleable though.  Hasn't had her 6 month check up yet b/c last time I took them both at the same time, I almost jumped out the window at the pediatrician's office on purpose, so I learned my lesson the hard way.  Nora's appointment is next week.  Ryan's appointment was last week.

Ryan is really sucking those fists and occasionally gets his thumb--he is working hard.  every time I put him on his belly for tummytime, he just faceplants into the mat and works on those fists.  He has gotten very grabby and we've really had a keep an eye on him b/c he'll grab at his gtube and pull it really hard or his IV line--this morning, I found him on the floor with the Broviac line (iv line) stretched so far I thought it would snap (the part that's usually at his knee level was up at his face in his hand) I scared him when I ran toward him to get him to drop it---how are we going to manage this as he gets older and more alert??
 He is SO HAPPY now, really very very happy.  He coos and talks and laughs and smiles all the time--until he gets sleepy, then he does a 180 degree turn in an instant into a screaming machine--but all is well once he gets in his swaddle and gets his pacifier. still bald, but starting to look like there's hope for hair finally.  At his 6 month visit yesterday, he was 13 pounds 14 ounces and very well behaved--the pediatrician could not believe how "fat and happy" he is compared to when she last saw him in June.  He is actually on the growth chart (5th percentile) for a fullterm 6 month old even though his adjusted age is old 3 months old.  The doctor commented that his growth curve is really funny looking and nearly vertical since he's been gaining such great weight.  Here he is grabbing at his toys on is playmat.



Who is this big kid?





On my walk (her bikeride):
Me: Caitlin, I'm really going to miss you when you and daddy go camping
C: Mom, I don't want you to miss me, I want you to be happy
Me: I'm happy that you and daddy are going to have a great time together, but I'll still miss you
C: Well mom, I just want you to have fun with the babies, I don't want you to miss me.  You'll do a great job with the babies.



New bike from Miss Kathy---THANK YOU--we've gone out everyday!  She loves her new bike.

Monday, August 17, 2009

A milestone for Ryan

We were soooo excited to finally see "30" for Ryan's hourly rate of formula through his G-tube.  We were told by the doc's that he wouldn't get much further than 13ml/hr and here he is 2.5 
times that--YIPEE!!  We were thrilled at the continuous steady progress.


unfortunately, we increased to 31 ml/hr and were met with too many runny poops and cannot increase his feeds further at this point.  I'm super bummed (understatement)--I was really flying high with how great he was doing and to hit this roadblock really sucks.  So we are praying that things "firm up" so we can see some more progress.  We've been stuck at 31 for over a week now and normally we'd been increasing every 3-4 days.  His meds are getting tweaked, so hopefully that will help.

Otherwise, Ryan made some great weight gains since his last visit and they were able to decrease his calories further from the TPN iv again.  He is now 13 pounds 10 ounces as of 8-14-09.

More tummy time





Lots of fun with Grandmas and Grandpa

Grandma Mary and Ryan:
Great-Grandpa Buddy and Ryan:
Great-Grandma Joanie and Nora:
Grandma Joanie and Caitlin did lots of art:

Thursday, August 13, 2009

milestone...

video

I started her with both hands under her, up on her elbows and by the time I got the camera, she had her right arm up--she's been doing this with some consistency for a few weeks, but not every time.  But, the really good news is that she's getting really strong, pushes up with her arms and tolerates being on her tummy for much longer than before.

Saturday, August 8, 2009

Crazy schedule

so, we have about a gazillion things to remember to do for Ryan between 6AM, when we turn his g-tube off for the first time, and 12am when we hang up his midnight feeding bag change.  Current schedule, not including regular baby stuff like naps, playtime or diaper changes, this is all just related to his medical / feeding stuff:
6AM-pump off, clean g-tube bag, flush with water, give an hour's worth of formula by bottle
7AM-hang fresh bag of formula and restart g-tube pump feeds
9AM-pump off, give an hour's worth of formula by bottle, clean g-tube site with soap and water
meds: iron, loperamide, vit D, vit A, omeprazole
10AM-restart g-tube pump feeds
12PM-pump off, clean g-tube bag, flush with water, give an hour's worth of formula by bottle
1PM-hang fresh bag of formula and restart g-tube feeds
3PM-pump off, give an hour's worth of formula by bottle, also, disconnect TPN and flush Broviac line with saline
4PM-restart g-tube feeds, take TPN out of fridge, give med: loperamide
6PM-pump off, clean g-tube bag, flush with water, give an hour's worth of formula by bottle
mix 24 hours worth of formula
7PM-hang fresh bag of formula and restart g-tube feeds
clean g-tube site with soap and water
meds: iron, loperamide, omeprazole
8PM-begin mixing TPN (takes 30-45 minutes to mix the meds, prime the line and attach all the connections)
9PM-flush Broviac iv line and begin TPN infusion
12AM-midnight tube-feed bag change with fresh formula

extra bonuses: every other Monday, I draw his blood tests off his Broviac line and deliver them immediately to the UM lab; every Wednesday we do a special scrub and cap change of his Broviac line; every Thursday we remove the dressing on his leg for his Broviac site, scrub his leg and line down with Cloroprep and place a new, clean dressing on the site.

whew! so, needless to say, we need reminders since we have the 2 girls and dinner and the phone and laundry and other "distractions" (normal life stuff) to deal with as well....so, one day (June 27th to be exact) I came home and was using the computer and all of a sudden pops up this lovely thing (very loud, i might add) and i was slightly horrified, but it does show how cute my husband is...in his corny but diligent and adorable way...

video

So, this alarm goes off 5 times a day to remind us to "...please turn the pump.  back.  on." because we'd forgotten a few too many times.  so, the reminders work but they grate on you after a while.  Caitlin and I did a lot of making fun of daddy for it because, well...you saw it.  i had to post it on this blog so that I never forget.  it always begs for a laugh and it made me smile often while John and Caitlin went on a vacation for 4 days and I was home with the twins and Nana.  Nana laughs at it everytime too.  Anyway, John asked Caitlin to make a reminder (because he was sick of me making fun of him) and she did, it's below and she followed John's lead almost exactly.  She's definitely got the right pacing and pauses.  This one comes on at 4pm now.  the rest of the reminders are still John's (the video I posted above).  I also get a similar reminder to turn the pump OFF throughout the day and to take the TPN out of the fridge at 4pm, it's like John never leaves the house---his weird video is always there to remind me to stay on schedule (love you honey!).  The rest of the stuff we just have to try really hard to remember...speaking of, I forgot to give Ryan his 4pm loperamide...gotta fly...


video

Friday, August 7, 2009

chillin


we are so all blessed to have daddy home all summer.

hair cut

Her first haircut in the salon was Wed 8-5-09 --she was really good and very excited.  But, this needed to be done since she hates having her hair pulled back these days...

big girl got a sucker/lollipop afterward

another sad attempt....

so, I'm just really sure that Nora is totally opposed to the whole idea of a birth announcement. Ryan likes the idea.  Same thing happened this time as last time...a whole lot of smiles from Ryan and a whole lot of trouble from Nora--I also gave up rather quickly.