Monday, May 31, 2010

quick update

Emma is home. She's getting better. Not 100%, but better. She's at least tolerating her feeding, which is a huge step in the right direction.

We're pretty exhausted and ready to get back to normal, but we still have some unanswered questions hanging over our heads. Specifically - What exactly happened to Emma's face and ears? How do we get them back to good health? How do we keep this from happening again?

The surgery that Emma had on Sunday was supposed to just be replacing her ear tubes, but instead the ENT ended up having to remove tissue from her ear canal? He said that this tissue is what showed up as fluid on the CT scan. It was apparently growing from behind the ear drum through the tubes? I don't get it. He removed what he could, and we're doing drops to try to fight it and get her face back to normal, but we're waiting for them to do some tests to find out exactly what that tissue is.

She's out of the hospital because she's tolerating her feeds again and they are convinced that her paralysis is not going to spread to become a respiratory problem, but it feels kinda gross that the reason we went there in the first place is still not completely resolved.

either way, God is good ... we're just tired.

Saturday, May 29, 2010

she's in baby jail

I get to be home tonight, Josh is taking a shift at the hospital.

For those who don't know, we took Emma to the ER on Friday. Aside from her general lethargy and GI symptoms, she woke up on Friday morning with one side of her face not working. When she cries, she looks like she's had a stroke - her right side stays droopy.

We did a CT scan, which THANK GOD came back normal. It showed a large amount of fluid built up in her ears, though. We knew her ear tubes were clogged and she's been on drops trying to help that, but apparently that wasn't enough.

So her ENT came down to the ER to see us and thankfully he recognized this type of facial paralysis as probably being caused by fluid built up in the ears. I guess there's a nerve that gets in the way that gets angry and stops working when there's too much pressure? I'm not sure. The point is, it's most likely temporary.

So she's in the hospital on IV antibiotics, plus she's still being treated for the GI stuff.

The good news is, however, that this morning she finally stopped pooping blood and the stool sample they took tested negative for the bug that she had last week. So she is on the road to recovery. And you can tell she's starting to feel a little better, too. She's awake more (although still wants to be held all the time!) and finally back to tolerating her feeds.

She in at least until tomorrow so she can finish her antiobiotics for the ears, though, so Josh and I are taking shifts and Charlie is LOVING his time with his Nana.

Christ with us, Christ before us, Christ behind us, Christ in us, Christ beneath us, Christ above us, Christ on our right, Christ on our left ... you get the idea.

HE is here yesterday today and tomorrow the same and once again, this does not surprise Him. He's got it totally under control.

We can do all things through Christ who gives us strength.

Thursday, May 27, 2010

Poor Emma

Wow! When you people pray, stuff HAPPENS! :)

Not one hour after I posted on FB that I would appreciate prayers for clear answers about why Emma is so sick, we got a call from our pediatrician's office saying that her stool cultures tested positive for something.

Emma's got some nasty bacteria running amok in her gut right now. It's one of those things that lives in small amounts in all our systems but when the flora of the GI track gets messed with, this particular icky bug gets to come out to play (similar to the way women often get yeast infections when they are on antibiotics - the yeast is always there but it runs rampant when the other "good" bacteria that keep it in check get killed off when antibiotics are in the system).

The reason Emma's been so sick, apparently, is because her old formula had a probiotic in it and when we switched her to a toddler formula that formula does not. So we took away the probiotic and the bugs all came out to play - specifically with her colon, if you really want to know.

The good news is that now we have an answer and we have a treatment. Emma should be back to herself in a week or so.

The other news (which isn't really BAD) is that after a day of the medicine, she's now feeling just better enough to be fussy :) Not only is this a nice change of pace from her sleeping 20 hours a day, but it's a nice feeling to know that when she's not feeling well, she wants snuggles from her Mama.

So thanks for the prayers, I'm SO glad we have an answer and hopefully Emma is on the road to recovery!

Wednesday, May 26, 2010

update

just checking in.
Emma is MISERABLY sick. Don't get me wrong, I love the snuggles, but ALL she does is lie in her crib or rest her head on my shoulder. I miss my Bear.

Sunday, May 23, 2010

how was your weekend?





75% of my family had a great weekend this weekend.

On Friday, Josh and I left Charlie and Emma with a wonderful friend from church who is going to be doing respite care for us (which, for those who don't know, is like babysitting but with Emma money and obviously some special training and a heart brave enough to learn how to deal with a MicKey button - not that our family members haven't all been brave enough to learn, but it's nice to have someone outside of the family who we can call when we need a break!).

So I got to go on a date with my husband, which was wonderful!

But Emma kept making some very strange noises in her crib on Friday night.

And then around 5 am on Saturday morning, she started retching (dry heaving, gagging, whatever you want to call it ... Nissen fundoplication means she can't puke, but that doesn't stop her body from trying). She retched every 15 minutes or so most of the weekend.

And slept and slept and slept.

So Josh took Charlie to his monthly shift at Feed My Starving Children (FMSC dot org for more info - awesome Kingdom stuff happening there for malnourished children).

Charlie came home super excited to show me his hairnet and to tell me about how he "packed food for kids who don't have as much food as we do!"

Then he and Daddy went to a baseball game with Papa, which was wonderful, of course.

Today Emma couldn't go to church (she's basically on a continuous drip of pedialyte - poor girl)

So when Josh got home from running the sound board he said that Charlie and I should go on a date ... I think he could tell I needed to get out of my head - I worry too much about my girl sometimes.

So Charlie and I rode our bikes to McDonalds and had a LOVELY date! Man, I love that kid!

But Emma ... she's just not well. I'm sure it's nothing too terrible, but I just HATE to see her sick!

Thursday, May 20, 2010

yesterday emma had a day-long clinic visit at CHC to meet with the cleft team. it was long, but good.

while we were eating lunch, a woman in her 50's walked up to us and knelt down to look at emma in her high chair and said, "Oh! I just have to ask! Does she have Cornelia de Lange syndrome?"

i said, "yes"

emma, by this point, had noticed the woman's name badge and stood up in her high chair to try to get a closer look. i told the woman she could pick her up if she wanted.

the woman got a little misty-eyed as she held emma. she said that she had been a foster parent for 17 years for a boy with CdLS.

i asked how he was doing and she said that the birth parents had maintained their rights and when he had turned 18 they put him in an institution

[I just need to insert here that I have NO opinion about that! I have NO idea what it's like to have to make the decision of what's best for an adult who can't live independently and I understand that this does NOT make the birth parents bad people. I only say this because I saw how much this woman missed her foster son. that is all]

emma found this woman's necklace interesting, and the woman exclaimed, "oh, you have your hands! i love your tiny hands, such beautiful fingers and hands!"

is it ok to say that i am so thankful for emma's hands?

i asked more about her foster son and she said that he had limb differences, never walked or talked, but ate like no one's business! :)

watching her love on emma made me want to cry. it reminded me of the world God opened up for me and how thankful i am

Tuesday, May 18, 2010

Detour

Needless to say, my life as I am living it now is NOT what I anticipated.

A small detour (very small ... like, 4 and a half pounds) entered into the plans about 18 months ago.

And now ... well, I don't have a road map for where I am.

And this is SO wonderful and liberating and just ... a HUGE blessing!

I was talking to a close friend yesterday whose family has their own detours and challenges and I was asking something about what the future looks like. The answer was a very complete "I have NO IDEA!"

And this was a LARGE question, too. One I had no business asking.

But it was answered with a huge smile, a shrug of the shoulders, and a free and open spirit ... I NEVER would have understood 2 years ago.

I've mentioned before that I am a well-trained information junkie. How on earth could I, of all people, be ok with not knowing what the future holds?

Quite simply, however, YOU DON'T KNOW EITHER!

If your kids are perfect and brilliant, you have no idea whether or not one of them is going to get hit by a car next week.

If your marriage is wonderful, loving, and fulfilling, you have no idea whether or not one of you is going to get cancer when you're 40.

And that's NOT a sad thought! It's the reality of your current situation!

And what I've found in this detour is that once you accept that all you really need is "just enough light for the step I'm on ... " i dunno, it's just better.

try something with me. ask yourself a really BIG question.

like, where will i live in 10 years?

now sit back in your chair, put your hands behind your head, smile, shrug, and with a twinkle in your eye, say "I DON'T KNOW!"

try a bigger one. Will my children live independently and prosper in this life?

Will my spouse love me here on this earth until we are both old enough to welcome death?

Will ...

You have no earthly idea.

And can you, with a smile on your face, embrace the fact that the One who DOES know the future loves you more than you can imagine?

I thought my world was coming crashing down 18 months ago. But what I really found was that the Lord has just taken me on a detour. He is giving me just enough light for the step I'm on. And He is blessing me with a peace in my heart that my illusion of control never once provided.

So I'm going to continue to trust in the Lord and lean not on my own understanding. How about you? :)

Thursday, May 13, 2010

I realized I hadn't blogged about my kids in awhile :) They're still here!

I don't know why I love the following two pictures, but I do. Emma and I were having a really fun playtime this afternoon (during naptime ... of course ...)

So I grabbed the camera and tried really hard to capture how cute she was being.

It didn't really translate in these pictures, I don't think, but what you see is pretty accurate. Emma is either a BLUR of activity, or just CRASHES into you for some love. It's pretty darn cute.

And here's Emma's latest fascination:

She has discovered that other people have ears, noses, hair ... etc. Daddy and big brother Charlie are particularly fascinating specimens. She'll sit for quite some time carefully exploring their heads and faces. Charlie thinks it's HILARIOUS! He lies down near her on purpose and when she sticks a little finger IN his nose he just laughs and laughs!

Well, he thought it was funny until yesterday, anyway, when she decided to further explore his ear by CHOMPING on it, but he has been very forgiving and quick to explain that she "just needs to learn not to do that"

He is SO good :)


Other than that ...

We're ok. :) I get to spend my day with two precious, beautiful babes for whom I'm very grateful and through whom God blesses me daily.

Thanks so much for all your thoughts and prayers, we are so blessed!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

oh, ok, can i just add one more story? annoying mom alert ...

Remember how Charlie learned the terms "compassion" and "mercy" from Veggie Tales' Jonah?

Tonight we were watching Cars (we really don't watch that much TV, I promise! It's just been raining a lot lately)

And at the end, Charlie told me that "Lightening McQueen saw that the King needed help and he wanted to help him; that's compassion!"

Doesn't miss a thing, that kid! :)

Wednesday, May 12, 2010

you gotta have a sense of humor about these things!

i was SO glad i checked out some blogs this morning before the kids got up!

see, yesterday i got REALLY mad about something. i even cried.

i got mad at our new van.

no, i didn't get mad because the van wasn't functioning properly. it works great

and i didn't get mad because the van reminds me that we're not going to need it as soon as we thought we would

no, no. those two things would be logical.

no, in my weird hormonal state, i just got mad at the van because it existed. i got mad that we had a van. i got mad that it's pretty. i got mad that we have it and that it's nice and ... yeah, i suppose it was a little tied into the fact that we got it thinking a 3rd car seat was a little more imminent than it is now, but mostly i just got mad at it sitting there looking all ... van-ish

uh huh

i got nothin'

no idea. just blame the hormones and move on.

so i REALLY appreciated this video that's circulating Mommy-Blog-Land:




laughter is good medicine :)

Monday, May 10, 2010

The lie

Charlie's Bible strikes again. :)

Tonight we read about Jesus going out into the desert to be tempted. This little Bible points out that the lie the snake tells Adam and Eve is the same lie that he tempts Jesus with and that it's the same lie that we believe.

As told by Charlie's children's Bible, in both the story of the fall and the story of the temptation of Jesus, the red and yellow painted snake says, "Wow! Is that what God told you? He must not love you, He must not want you to be happy! You'd be better off if you ran away from God and did things your own way."

All of us have run away from God and still drift from time to time.

And most of the time the temptation to run is rooted in this lie; that we can handle life better on our own.

I don't really want to peel away all the layers of the pain of this most recent loss. I'd like to go straight from "this sucks" to "I have a peace in trusting that God has a plan for my life" without all the "growing in my faith and knowledge of God" stuff in between. Cuz growing usually stretches and stretching is usually a little uncomfortable.

So, truth be told, I find myself searching for comfort from friends and family. NOT that there's anything wrong with that. But people will ALWAYS disappoint. In big ways and small ways, people will never provide the perfect love and wisdom and comfort that we truly need.

The old hymn says, "oh, what peace we often forfeit! oh, what needless pain we bear all because we do not carry everything to God in prayer."

So thank you all so much for all your notes and prayers. You know they mean the world to us! We are SOOO blessed and you know that so many of you are Jesus with skin on to us SO often!

But tonight, I'm turning off my phone, shutting down my email, getting off Facebook, and getting on my knees.

Saturday, May 8, 2010

john 11:35

loss sucks



we were pregnant.



but we lost the baby.



and we're sad.



i'm in a weird place right now. physically, i mean. we had an ultrasound yesterday and the baby's dead. i didn't show any signs until today.



i'm still exhausted. my clothes don't fit. i'm hungry and thirsty and peeing all the time as if i were pregnant. my body just hadn't gotten the memo yet ...



i'm feeling gross and fat and ... pregnant? but not going to have a baby? and i'm about to start the worst period of my life, apparently.



it sucks


I'm told that there are those who would theologically say that if i were really close enough to the Lord i wouldn't feel sad. if i really trusted him enough i wouldn't mourn his plan. if i believed that he is all-powerful and in controll then there is no reason to mourn. if i really were heavenly-minded enough i would rejoice that another innocent soul had gone to be with him.

that's crap

jesus wept.

john 11:35. when his friend died, jesus cried.

so it must be ok to cry.

and i'm gonna.

rejoicing will come in the morning, but for tonight, i'm mourning a sad loss.

Tuesday, May 4, 2010

A small thing

Charlie was out doing man work with Daddy and Emma and I were playing in the living room.

I had to go to the bathroom, so I signed for her to "play" with some of her toys and that I would be "right back".

(she doesn't get sad when I sign these things ... I know she doesn't understand when I SAY them, but I think she may understand the signs?)

So I went to the bathroom down the hall, and just as I was finishing up, I heard a little raspberry-blowing girl coming down the hall and into the bathroom.

She crawled away from her toys to come looking for me!

I know it's a little thing, but it's the first time she did something like that, and particularly since I was out of sight, it made me really happy :)

Monday, May 3, 2010

gonna be a week!

nothing bad happening this week, just LOTS of appointments. (most of which are not really interesting enough to blog about but still important for the Bear)

Emma saw her geneticist this morning, though, and was officially proclaimed to be a "rock star"! Other than a suggestion that maybe we should look at seeing an orthopedics doc after next year's check-up (yup, next YEAR'S!), everything looks great with the girl.

She's even going to be in a textbook :) Our doc asked if she could take her picture for a genetics friend of hers who is writing a textbook and of course we said yes. She's just so stinkin cute, right?

(i mean, yes, i know, that's not why they wanted her picture, but aside from the fact that she IS cute, i completely support the educational value of a picture being worth 1,000 words)

so the blog may be neglected for a week, but i promise you I'll be back with all SORTS of interesting things to talk about :)

but now ... a nap ...