Friday, February 27, 2009

Two links to excellent readings

If you haven't read Welcome to Holland, you need to!

And this link is Pastor Dave's insights about Job. It really hit me. Not that I'm currently experiencing the suffering of Job by any stretch, but life can be stressful. I know that times are tough for a lot of people right now, though, and how many of us put blinders on when our lives are difficult? I think that when times are tough like this, Satan has a field day with all of us walking around selfishly thinking about our own problems and not looking past the ends of our noses. Think about it globally. If we're all focusing on our own problems (not to minimize ANYONE'S problems!), what happens to the community and fellowship that we need MOST during tough times? Anyway, thanks Pastor Dave for convicting me. God knows what He's doing. I pray that I can still shine His light even when I'm surrounded by situations that would make me focus on darkness.

We are "Emma good" - medical update post

That's what I keep telling people, anyway. We're doing well, based on our new definition of that word! :)

Emma has a cold. I know that doesn't sound like a big deal, but this is Emma's and Mommy's first chance to learn what "Emma is just a little sick" looks like vs "Emma needs to be rushed to the ER now!" It's hard to tell ...

So when Emma has a cold, since her nasal passages are open to her mouth, her runny nose runs into her stomach. So a respiratory issue quickly becomes a GI issue. And Emma can't puke, so she has a cough AND she "wretches" (or dry heaves, there isn't a pleasant way to describe it ...) So I'm venting her almost all the time. (open syringe on her G-tube so she can "burp" or "puke" or whatever) which makes me worry that she's going to get dehydrated because it's like a typical kid puking a lot. And of course all of us have lower appetites when we are sick, but Emma doesn't have control over how much is going in, so I don't know if she's just uncomfortable because her normal amount of food is too much when her body is trying to fight off illness ... oh, and with her airways and breathing and such, she ALWAYS sounds like she has pneumonia

So we took a trip to our favorite pediatrician today. She listened to Emma and ordered a chest and bowel X-ray so we could be sure, but Emma does not have pneumonia (Thank God!) and nothing's obstructed or anything. She does have that awful yeast infection/diaper rash thing, so we're working on yet another Rx for that, but at this point she just has a cold and it's upsetting her stomach, but it's just a viral bug.

I HATE not knowing how much to worry about her! In the past with my typical child I've been the mom who says "You have a sick kid? Bring them on over, let's build up those immune systems!" and encourages sucking on shopping carts (for toddlers, of course, not adults ... that would be weird), but suddenly Emma is throwing me for a loop in that department.

If she has a bug, that's fine, kids get bugs. But I'm praying for wisdom and discernment for when to relax and not worry and when to trust mother's instinct that something could be wrong.

But Charlie was QUITE the little stud at the office today. Anyone who's had to have chest x-rays taken of a baby knows that it's not pleasant and involves holding down a screaming child. So Charlie worked the nurses' station while we did that, telling them all about the shoveling he did with Daddy last night and such. Seriously, the little man knows how to work a room!!! Thank goodness for wonderful nurses at our clinic who are willing to entertain the little man during long Emma appointments.

Monday, February 23, 2009

Charlie's very own Not Me! Monday!

The following DID NOT come out of my two-year-old's mouth this weekend.

(a little background: Charlie's grandparents have a dog. A small, white, full of energy, "I am Maltese, hear me ... um ... roar," puppy named Buddy. He and Charlie have quite a relationship, particularly when Charlie is sitting at the table for a meal and Buddy is hopeful under the table.)

Around the lunch table on Sunday:

Charlie, out of the blue, during a lull in conversation, having not mentioned Buddy in over an hour:
"I didn't kick the dog"

Mommy, trying not to spray wine out of her nose while attempting to not laugh at this possible confession:
"You DID kick the dog or you DIDN'T kick the dog?"

Charlie, looking very serious and matter of fact, shaking his head very sincerely:
"I DIDN'T kick the dog."

Mommy, wondering where this is going:
"That's good, we shouldn't kick people or dogs."

Charlie, wide-eyed and nodding his appreciation that his mother clearly understands what a good boy he is:
"I just pushed him out of the way with my foot."

Sunday, February 22, 2009

Thanks so much!

First, very quick thank you to the replies on my last post. We have actually been doing infant massage with Emma since she came home from NICU, and she really enjoys that (except for the part where we're supposed to straighten her arms, but I hear that's typical), so I'm glad to hear we're on the right path on dealing with what may or may not be sensory issues. Thanks, too, for validating my feelings about not knowing whether this is CdLS or just Emma right now. One day at a time, right?


We took Emma to visit Josh's parents for the first time this weekend. (For any health care professionals reading, no OF COURSE we did NOT take our infant with special needs 3 hours away from home in the wintertime, why do you ask?)

This was Emma's big debut at Josh's parents' church (the church he grew up in).

All of us left with tears in our eyes (Charlie's tears MAY have been because a nap was long overdue, but i digress .... again).

God used you all to remind us AGAIN (don't get me wrong, we have LOTS of people in our lives who remind us of this, but it was fresh and new again for us this weekend) of something I don't think I spend enough time thinking about:

We are blessed with an incredibly
prayed for,
MIRACLE baby in our arms!!

Glory to God for the good work He has begun in Emma. He will be faithful to finish the work he began.

Thank you thank you thank you thank you to that Body of Christ for reminding us of that today. I can't tell you how it restored my soul.

Thursday, February 19, 2009

Is this "normal"?

whatever that means ...

Emma is not a "rock me to sleep" kind of girl. And that's fine! Charlie needed a SILENT house and Mommy's arms to sleep peacefully for more than 10 minutes when he was a baby, so I'm REALLY ok with her being the kind of baby who you can just put down when she's tired.

But I'm assuming that it's normal when you have a baby with a syndrome of some sort that whatever quirks they exhibit as babies you sit and extrapolate in your head into what they may be like as older children. All parents do that to some extent, but the more I read about "quirks" older CdLS kids have, the more I wonder what Emma's will be.

So here's my concern (and it made me cry today ...)

Ok, first, Emma doesn't cry out when she wakes up. She just lies there and sucks on her fist or something. I guess you can explain that one pretty easily: I can feed her in her sleep, so every 3 hours, whether she's awake or not, she eats. So she never wakes up hungry (although if she's already awake, she does cry if she's hungry and get satisfied when she's full, which is weird to think about when she's not actively doing anything to "eat", but I digress).

So I have her baby monitor turned up super loud and I listen for her breathing pattern to change. The hard part is that babies have sleep rhythms and it's hard to tell if she's just in between REM cycles or truly waking up. I worry about her just lying there and not getting loved on, you know? But I'm sure there have been times when I've scooped her up too soon.

And the other hard thing is that when she's tired, she doesn't want to be soothed, she just wants to be put down.

And I want to snuggle her!

So this afternoon she woke up and I got about 20 minutes of happy smiley Emma time before she got fussy because she was hungry. I started feeding her and she was still fussy. I KNOW that babies need to go back to sleep within two hours of waking up, but it's really hard because I don't know when she woke up!! So I wanted to just snuggle her close while she was eating and then, I figured, if she was tired, she'd fall asleep.

But she just got madder and madder.

So after about 20 minutes of escalating screaming, I burped her and put her down in her crib.

She settled right down.

But the heartbreaking thing was that I peaked my head in about 5 minutes later and she wasn't asleep. She was just happy in her crib. She was asleep 5 minutes after that, so I'm sure she was just going through her process, but SERIOUSLY? You'd rather stare at a wall than snuggle with me????

So now I'm thinking that we're going to have attachment issues and all that. I know kids with CdLS sometimes have affection issues or autistic like tendencies and now all those articles are bouncing around in my head because Emma wanted to fall asleep on her own this afternoon.

She DOES recognize Mommy and smile at me. She is soothed by my voice when she's fussy for some other reason. She doesn't care if I leave the room, but will smile back at me when I come back. Yesterday we had a GREAT afternoon together, hanging out and smiling and singing and playing pat-a-cake and all those things you do with a baby. But this afternoon she wanted NOTHING to do with me.

So am I being neurotic? Is this a taste of things to come?

Did anyone with typical, well adjusted kids have a child who just needed their space and grew up loving Mommy and Daddy and attached just fine?

Or is this something that CdLS parents have seen before and I need to get used to it?

I guess I keep saying that she's just a baby, which is true. And I keep joking that she's not developmentally delayed yet because she's not "supposed to" be doing much. But even as babies, will kids with CdLS have different behaviors? Another example might be that all babies hate baths for awhile, but I worry that she's going to get an "aversion" because she screams during bathtime.

Sometimes I wish I had a crystal ball and sometimes I'm glad I don't. If I knew that her likes and dislikes now were indicative of things to come, would it really make a difference in the end?

A wise woman told my family: Emma will do what Emma will do when Emma will do it.

And I'll learn along the way in small baby steps what that will look like.

I think right now this is just part of that emotional roller coaster everyone talks about.

Sunday, February 15, 2009

Got sand?

Winter in Minnesota. What better time to find some sand!

Yes, you read right. It was 20ish degrees with a nasty raw wind, and he was running around barefoot in a sandbox........indoors.

Ok, now this was no regular sand box. As with all things at the MN Zoo, it must be done to a grand scale.

Yes! Sand as far as the eye could see jam packed with kids and parents digging and the dead of Minnesota.

I can't count how many time we played this game:

Daddy will build it!

It will stand for about 2 seconds.

Charlie will destroy it.

And Mommy will go all artistic on us.

And then it was off to greet the bears.

We had a great time at the zoo. Thanks for Uncle Dave and Auntie Chelsea for being brave and watching Emma!


I may, however, be biased :)

So I'm just going to throw up some quick pictures this afternoon because Josh has said that he wants to make a guest appearance sometime soon to blog about the wonderful time HE has been having lately with his children

... but i figure that *may* not include the ADORABLE outfit Emma wore to church this morning ... ahem ...

so here's the little darlin' :)

(ok, so blogger is back to only displaying the *code* for the pics and not letting me see them until they are posted ... apologies if the order of the comments doesn't make sense ...)

Could you just die??? :) Her little socks were knitted by my mom to look like little Mary Janes and I discovered yesterday that her hair is long enough for little HAIRCLIPS!! (again, i can't imagine WHY Josh wouldn't want to blog about this momentous discovery in our daughter's life ... but ah, well ... )

She was very patient with me the night I made this discovery ... until I caught some of her hair in the metal on the clips ... then she screamed ...

but of course that meant that I HAD to go out and buy more accessories ... Thanks, Grandma and Papa for the Valentines gift card!!

And Charlie is back in my good graces :) Particularly since as the stinkiness of this two year old age increases, his sweetness increases portionally ... for my ex-students, would this be an inverse relationship or direct or indirect proportion? :)

He got very into making his valentines.

And because I want to be like MckMama, we've started playing "beans."

and when i say "we" play beans ... we ALL must play beans, according to the Charles Monster ... Emma has her car, bear has his, Mommy has hers ... and no, of course we're not all sitting around in our pajama's, why do you ask?

Charlie does such a great job and is really quite gentle with trying to get Emma to play with toys with him. He tries to hand her things, and actually we've gotten really good at trying to get little rattles and stuff like that into her palms and I swear he gets more excited than I do when she finally opens that little fist and grabs it!! He doesn't know he's doing therapy with her ...

In general, we're pretty happy campers! Emma's doing really well, making little happy noises more and more and gaining more head control. And even though Charlie is t-w-o TWO, I still have yet to see the jealously come out that I was told to expect ... maybe when she's awake more and mobile, but for right now things are going very well.

LOVE TO ALL!!! Stay tuned for our valentines day adventures coming to you live from the DH, Josh

(sorry, honey, that's Darling Husband ... but baseball season is coming soon, I promise!)

Tuesday, February 10, 2009

not entirely "wordless"

... but significantly less introspective :)

This is Mr. Pig burping Emma :)

Emma Bear and I had a great smiley time hanging out on Mommy and Daddy's bed while Charlie slept today.

Charlie is ... ummm ... acting his age right now, so all you get is Emma cuz today, she's the cuter of the two :)

Oh, come on, i'm the mom, i'm allowed to say such things!

Just kidding, Charles Monster, I love you ... there are just some days ...

PS - Whatdaya mean it's not Wednesday?

Monday, February 9, 2009

Not Me! Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I suppose if I reference the Not Me! Mondays in my post last week, I should participate this week, huh?

Well, let's see ...

I definitely do NOT have my hair in a pony tail for the umpteenth day in a row, which has definitely NOT split the majority of my hairs in half so that I'm sort of sporting the Juno look most days you see me:

(without the pregnancy, of course. This isn't a joke, I really truely am NOT pregnant .. no, for real, it's not part of the theme of the post, I'm really not. Not that I don't still have the belly to complete the look ... and not the being THREE WEEKS LATE didn't scare the CRAP out of me ... but that's another story ... I honestly and for real am not pregnant!!!!! )

But back to the theme ... I did NOT just blog about my menstrual cycle ... nope, not me.

I also have NOT gone germophobic trying to keep Emma from catching any Charlie germs. I do NOT look like I'm wearing red gloves because I'm washing my hands so often.

And in that vein, I also do NOT have multiple cloth diapers scattered around the house for wiping runny noses. My two year old does NOT "wipe" his nose by himself these days, resulting in a clean nose but disgusting cheek. And back to the cloth diapers, I did NOT yell at my darling husband this weekend when he had the AUDACITY to not keep track of whose snot rag laying on the ground was whose.

And when no cloth diaper was available, I most certainly did NOT wipe said two-year-old's nose with the sock I was wearing when he came up to me to annouce that he had a runny nose. And even if I had, I would NOT have put the sock back on when I was done ... nope ... NOT ME!

(and after I DIDN'T do that, the first thought that went through my mind was NOT that the story would be great for the next Not Me!Monday ... I'm NOT addicted to blogging!)

And again returning to the Darling Husband, I did NOT also yell at him this weekend for the following crime: I put a bunch of beans on a cookie sheet and let Charlie drive his little toy trucks in it (think like the sand table you see at the Children's Museum or something), but I told Charlie that the beans had to stay in the pan. Josh came along and was playing with Charlie ... yes ... you guessed it ... he spilled some beans ... I did NOT yell at him .... and then when he thought he'd tease me for being so ridiculous and push a couple more beans out just to see what I'd do, I did NOT storm out of the room to go "clean up after dinner" (read: pout). Nope, not a control freak ... not sleep deprived ... NOT ME!

I also did NOT tell Charlie to put his own pants on this morning (knowing full well that he is not quite able to accomplish such a task) because I needed to buy myself 5 minutes to get something done for Emma. In another effort to buy myself five minutes, I also did NOT tell him he could use the clipper to clip his own toenails ... no, that would be dangerous ... I would NEVER do such a thing!

And finally, since our son does NOT watch TV (much ...) he is NOT in love with the movie "Cars" and therefore would have no idea what the characters names are on his Huggie's wipes container. Therefore, when he was NOT pointing out "That's Lightening McQueen" and "That's the King," I did NOT tell him that the name of the obnoxious green car in the background is Chick Hicks, just to hear how funny it would sound to hear him say that in his little two-year-old voice.

by the way, hearing a two-year-old try to say "Chick Hicks?" Hillarious

Not that I'd know

Not Me!

Friday, February 6, 2009

I'm NOT whining!

In light of my new resolution not to whine, I'd like to entertain you with a twist on "Not me" Mondays and tell you a story that definitely *didn't* happen at our house today ... because if any of it *had* happened and I were to blog about it, that would be whining :) This way, it's funny :)

First, Emma definitely does NOT have one of her little hands wrapped in toilet paper because Mommy did NOT cut her finger while trying to trim those little fingernails. And Charlie did NOT stand next to her and sing Jesus Loves Me 6 or 7 times while I tried to get the bleeding to stop ... with increasing volume ... I definitely did NOT have one child screaming bloody murder (no pun intended) and the other one screaming "FOR THE BIBLE TELLS ME SO!" because he thinks it's his job to sing to Emma to calm her down when she's crying ... nope ... didn't happen ...

Secondly, since we are TOTALLY on top of things around here, we did NOT not notice that Emma would be out of Zantac today and we definitely did NOT have to use the phone number the pediatrician gave us "for emergencies" to call and ask for a prescription refill ... we wouldn't do that to the pediatrician we love so much!

And finally ...

I am NOT typing this wearing 3 layers of clothing because our furnace did NOT decide to stop working in the middle of the night last night. We do NOT have two sick kids and no heat! Our children did NOT both wake up crying at 4 am because it was in the 50's in their rooms and our electicity bill is NOT going to be thousands of dollars this month because we are heating the house with space heaters. There has NOT been an furnace repair dude downstairs for over an hour now because he can't figure out what's wrong.

Nope, furnace works fine, we're totally in control of thank you notes and prescriptions, and Emma's hands (and sleeve ... and mommy's sleeve ... and the sock that she's wearing as a mitten to keep the toilet paper on ...) are totally blood-free.

Yep, we're doing great!

No problem!


ahem ...

Thursday, February 5, 2009

you might be presbyterian if ...

... if you've ever thought "I really like the New Testament God better than the Old Testament God."

Being raised in a church that taught mostly from Paul's letters, I have struggled for awhile with the idea of a vengeful God. (and btw, I rag on it a lot, but I do love the church I was raised in, please don't get me wrong)

So there's a lot of the Old Testament that I haven't really sat down to read. But lately I've been feeling drawn to 1&2 Kings (huh? who reads those? :) ). In what I was reading last night I was struck by a passage about a righteous king being "justified" in putting someone to death because they broke a promise before God. I don't like that stuff ... it makes me squirm ... and I can't imagine it's any more comfortable for non-Christians. I don't really like a God who doles out punishment, whether the person deserved it or not. I'd much prefer pop-culture's parenting style of "please try harder next time. Here, have a cookie" :)

But I'm reflecting on it here because it struck me about something with this new curve-ball life has thrown at us.

I have woken up in the middle of the night several times lately thinking "it's not fair!!" And that's normal, right? I don't think I'm confessing anything deep and dark in my heart by saying that I don't feel like it's fair that others get to breastfeed their babies in the middle of the night and I'm awakened by a beeping pump. And I could get really whiny about it ...

But here's what I'm TRYING to work on in my heart.

I don't want what I actually "deserve." God is God. God is good and holy and all-loving and perfect and I am, well, NOT. And as a result, when I stand before God today and in the hereafter, I don't want what I DESERVE. I know what I deserve, and it's not God's blessings or love or even presence. But I've received all of those in huge amounts through Emma's situation and otherwise, so I need to let go of that vocabulary of "fair" and "deserving."

Praise God that this life is not a merit-based system in God's eyes! You and I and EVERYONE you see can't earn God's approval or blessings. Would you really want a God small enough that you could impress him? That's the blessing of Christ, that God doesn't treat us according to what we deserve.

God is the God of grace. And it's not like it ever occurred to me to feel punished by God because I have a special needs child, I've felt nothing of the sort! But the idea of whining because any part of Emma's situation is "not fair" is, I'm learning, not consistent with my view of a all-powerful and gracious God. I don't know His plan and I need to trust Him and stop worrying about how I would have planned things.

So thank you, God, for your amazing love and blessings that I don't deserve. Help me let go of thinking that my current situation isn't "fair," because you are God and I am not.

Thank you, Lord, for Emma.

Tuesday, February 3, 2009

Becky is laughing out loud!!!!

If you haven't witnessed the joy of "cake wrecks" yet, you NEED TO!

Check this out:

If you haven't caught on that I'm a geek by now ...
I *might* be sitting here laughing out loud by myself right now (Josh ran to the store) ... or that could be because I just had a glass of wine ... don't you love post-pardum glasses of wine? Jesus TOTALLY knew what He was doing with that first miracle!!!!

Anyway, Emma update.

We were in the dr's office for about two hours this morning chatting with her pediatrician (who, by the way, I totally want to go out to coffee and be friends with! Biggest blessing ever that I LOVE my pediatrician!) After Emma endured tests for both RSV and pneumonia (neither of which seemed to be much fun from her point of view) and several "You realize that if this comes back positive we're checking her into the hospital today, right?" comments, Emma is fine. She has a cold, but she's fine.

It was really empowering that after Emma fell asleep on my chest (I was slouching, so she was on her tummy), Dr.R came back and listened to her again and said that I was "definitely making the right decision" sleeping her on her tummy and that it was hard to tell even from her standpoint whether or not she was having respiratory distress with her cold until she listened to her while she was on her tummy and saw that she was ok (for those who haven't met her, she is a LOUD breather because of her oral anatomy). Score 1 for Mother's Instinct!

(btw, do I use parantheses too often? yeah ... maybe ...)

(you should try talking to me in person)

Anyway, Emma is fine. Little antibiotics for the tummy being infected and upping the Zantac dose because she's growing (7 lbs, 11oz, baby!!), but otherwise good to go.

And I L-O-V-E LOVE that little girl!!!! We did more singing along with Mommy tonight, which I think is SO fun. Was I this excited when Charlie started making noises? Probably not, but I guess that's part of the blessing of "special" kids, right?

Charlie is up with Grandma for a couple of days and I talked to him on the phone tonight and he's having a great time. I MISS THAT LITTLE BOY! But I am so eternally grateful that Grandma and Papa love having him by himself up at their place.

I'll do more pics soon, and I've made a resolution that I'm going to start getting back into the Word again, so I'm sure I'll have more to say on that (Thanks for letting me "journal" to you all!) again soon, but for now, LOVE TO ALL and thanks for your prayers for my kids!

Monday, February 2, 2009

Sorry, I'm a bad blogger! But you know, life gets busy :)

First things first. Here's the little darling with her "I know something you don't know" smile.

She's getting to be really fun. She's been smiling for awhile now, but now she's started what Charlie calls "singing." Obviously her noises will be different than a typical baby, if for no other reason than her oral anatomy is different. But Charlie and I were singing songs to Emma this week and she started opening her mouth really wide and making an "aaa" sound. Then she scrunched her face up in this big "I'm proud of myself" grin. I tell you, every little thing this child does is going to be cause for celebration for me!! She repeated the performace for Grandma this weekend and thrilled everyone (especially proud big brother Charlie).

But we are struggling with some sickness around here. Charlie's got a pretty good cold, but Grandma and Papa agreed to take him up to Duluth for a few days anyway as planned. I miss my monster, but I'm sure he's having a WONDERFUL time! He so loves it up there and he was really looking forward to going "just Charlie, not Mommy, not Daddy" (this was clarified by him several times, usually followed with an exclaimation of "I excited!")

And Emma has a cold. I'm not really sure how worried to be about this ... her NICU nurses made it sound like a certainty that if she got a cold she would be back in the hospital, but so far we seem to be doing ok. The only thing is that she's got these tiny little airways and I have had to go in while she's sleeping a couple times and clear her nose because it was TOTALLY blocked with crusties (gross, I know, sorry) and she doesn't seem to want to breathe through her mouth. We've got an appt tomorrow to look at that and her G-tube site, which may be a little infected.

All in all, we're ok. I don't really know what to do with myself today, actually, with Charlie gone! Emma is still so little and sleeps so much, I'm sort of at a loss ... I clearly did not appreciate how easy a newborn was when Charlie was little! :) But isn't that the way of it?