Wednesday, January 28, 2009

"Wordless" Wedesday

because do you seriously think i can stay "wordless" for that long? honestly ...

But I do have pics, so here we go.

A quick explanation for these next two. My dear friend Melissa (who I miss desperately and who's thank you card is in the mail ... really ... i promise i'm not blogging instead of writing it ...) sent Emma and Charlie gifts this week and I love her for it. We opened an adorable outfit for Emma including cute little girl shoes, size 1 or 0 or whatever's littlest (and truly, is there anything better than cute little shoes??). We went AWWWWWW, and then when she woke up from her nap ... we realized something ...

The shoes are tiny and perfect. Emma's toes are tinier (and perfecter? :))

She'll love them ... in a couple of years? :) Thanks, Melissa!

----------------------------------

So on to why I can't be wordless today. I'm really sorry if the medical stuff makes anyone woosy or anything (Papa John might not want to continue reading), but I have a prayer request.

Emma's G-tube site has been compared to a peirced ear hole and has thus far healed nicely. But today when I got her up from her morning nap, there was blood on the front of her pj's. Not a lot, but (again) any is too much in my opinion!

Those of us with peirced ears know that this happens sometimes, right? Bleeding stopped right away and she calmed down and when the clinic called me back (2 HOURS LATER!) they said that she should be fine but to watch for signs of infection.

Emma's fine, sleeping soundly.

But could you pray for ME today? Parents out there can attest that when something is wrong with your child (like, say, they get a weird rash from an allergy or break an arm), you sort of go clinical, deal with the situation, and, with very little fear at all, get the child to the health care professionals and THEN freak out? I don't know what's wrong with me, but apparently that eerie "mother calm" does not extend to "my daughter is bleeding out of a hole in her tummy that I don't really understand." I don't think I OUTWARDLY freaked out (Charlie wasn't concerned, anyway), but I wish I could hold it together more when stuff like that happens. It took me awhile to get up the courage to really investigate the area and figure out if an ER visit was in our future. (it wasn't)

I need to get comfortable with this stuff. This is not the last time Emma is going to have health care issues that are scary but that I need to deal with by myself (with Charlie's help, of course). Please pray for God to give me wisdom and calm when I need calm and energy for action when action is needed?

Thank you, everyone!

Tuesday, January 27, 2009

Praise for today ... "problem resolved"

I just finished a wonderful snuggle time with both my kids. Charlie was "holding baby Emma" (read: she was propped up on a pillow on his lap and he was rubbing her chest) and I was reading "Sam-I-Am" (green eggs and ham). Emma reached up with her little hand and was sort of batting his cheek like babies do. So Charlie put her little hand on his mouth and did that thing that all parents do that i'm not sure i can describe typing ... it involves her hand on your mouth and shaking your head back and forth going "mawmawmawmawmaw" ... know what i'm talking about?

So she's looking up at him and he's "mawmawmaw-ing" (it's a verb now ...) her hand and as tears of joy well up in my eyes, she gives him a BIG Emma smile!! He giggles and says "she likes it!" and keeps going and she smiles when he does it!!!! BEST.BROTHER.EVER!

But our big praise for today is our cardiologist appointment. For those new to the story, Emma had MULTIPLE heart defects when I was pregnant and has had two normal echo scans since she was born. The doc looked over her scans, listened to her heart, checked her pulse in various places in the body (if there were an issue with blood flow the pulse would be stronger in some places than others and that would be a sign that an issue they expected has returned). He said everything looked great and with the smile of someone who knew EXACTLY what it would mean to this new mother, he said "I don't ever want to see you again. You don't need to come back, her heart is fine."

The official term on her records is "problem resolved."

God is good, amen? :)

Monday, January 26, 2009

i love how much kids love Emma!

she's smaller than even the smallest of them and they don't stop to think about how it's a bit abnormal to have a tube coming out of your tummy. Of course that's how Emma eats, why would it be any different?


love this pic of little maya and Emma:

Maya sort of looks like she's either getting away with something or is, herself, emma's proud momma.

We went to the preschool playdate at church this morning and all the kids there just LOVED on her (and by that i mean gave her pat-pats on the back of her head as often as possible, no matter how close she was to my ... umm ... chest at the time ... love you, Nolan!)

And I love that kids know that it's "baby Emma" because their families have been praying for her. I'm humbled and blessed to tears. Thanks, guys!

Sunday, January 25, 2009

And I realized something much less profound about myself the other day

I have no original ideas in my head


If you spend any amount of time with me at all, you'll learn that ...


All of my political views come from the West Wing ... Jed Bartlett for president




All of my socio-economic views come from star trek (card-carrying GEEK!)



And most of my theological views come from Psalty the Singing Songbook


If missed this particular gem of the '80s, you HAVE to check it out sometime!




But for now, here's my song for the day for Emma:



If I were a butterfly,

I'd thank you, Lord for giving me wings

And if I were a robin in a tree

I'd thank you, Lord that I could sing

And if I were a fish in the sea,

I'd wiggle my tail and I'd giggle with glee

But I just thank you, Father

for making me ME



Cuz you gave me a heart

(perfectly healed!)

and you gave me a smile


you gave me Jesus and you made me your child

and I just thank you Father for making me ME!



And speaking of the '80s, who's hair is she channeling here??!?!
Come on, ladies, you know you totally tried for the "bangs half up and half down" look when you were younger!
Anyway, it's hard to get a picture of it when I'm alone with two of them (trying to protect Emma from Charlie's over-exuberant love), but Emma is definitely, for real, socially, not just gas, smiling! yea!!

Thursday, January 22, 2009

can i be honest with you?

my son is more likely to end up on the cover of Parenting magazine than my daughter.

And I struggled with this when I first heard about CdLS. Emma was in the hospital, so I was spending more time up late looking online about CdLS than I was falling in love with my little girl, and I have to admit this ... in terms of the superficial magazine beauty the world sees, Emma will fall short, and that was painful for me.

And while I'm at it, I'll admit to several other horrible thoughts, just because i want to talk to you about what God's doing in my heart.

I struggled with seeing Emma's beauty AND seeing CdLS in her. I don't have to love the fact that she has CdLS in order to love her full head of hair and eyelashes, even though her full head of hair and eyelashes are probably BECAUSE she has CdLS.

And most importantly, I struggled with my love for Charlie. I had to wonder, "what are the reasons I love my son?" He's smart, he's adorable, he's quite the talker, he'll charm your socks off, he's obedient ... and these are also reasons I'm proud of my son. But is that an un-holy pride? I mean, I didn't make Charlie smart any more than I gave Emma CdLS, so why do I get to be proud of Charlie for that?

For my resolution to these questions, I want to back up a couple of years. During my last year and a half of college, my faith in Christ had been renewed and I was starting to walk the walk more than I had during the rest of my college experience. Josh and I were engaged and I was starting my student teaching experience. Now, you have to understand that I grew up very sheltered. I didn't know any poor people personally, and the only minorities I knew well were the ones who "acted white" (I'll have to reflect on my thoughts on that phrase another time ... ).

The school where I did my student teaching was mostly non-white and 75% of the kids qualified for free/reduced lunch on the basis of their families income.

This was, to say the least, a bit out of my comfort zone

You've all seen the movies ... either Michelle Pfieffer or some nuns are trying to teach some inner-city kids and they all get down to some good ole Motown music by the end of the movie? Real life is nothing like that.

I very clearly remember my first day of student teaching. I sat in the parking lot watching the kids walk in the door in front of me. I was listening to a Christian radio station and the Ginny Owens song about 'walking through the valley if God wants me to' was playing. I truly thought that's what God was doing in this situation. (it's ok, you can laugh) I have no idea how I got in the front door without crying.

I was a very small person

Not that I was a bad person, my life experience was just very small and for some reason the thought of teaching black kids (or Latino kids or Somali kids or white kids who talked and dressed differently than I did...) was terrifying to me.

I taught there for 5 years after I was done student teaching. I loved it. I miss it. I can't tell you how much I grew.

God gave me His eyes and His heart for those kids. I had very long and wonderful religious conversations with recent Somali immigrants. I counseled an African-American girl struggling with an unplanned pregnancy. I went to a funeral for "another black kid killed in a drive-by shooting." They all taught me so much and for some reason they liked me and I learned that there was no pity or 60's music soundtrack in the background and we weren't going to high-five and all be "the same" at the end of the show. Life is never that easy.

Ok, back to today.

When I first heard of CdLS and went and search websites that had pictures of kids with the syndrome. I'll be really honest. I didn't think, "aww, they're so cute! i hope i get one of those!"

I am a small person.

I taught Chemistry, people! There weren't a lot of "special needs" kids signed up for my class (although they ALL were special and many were needy, but you know what I mean)

I am soooooo ill-equipped here! I didn't befriend the Down's kid in middle school like the after-school special told me I should. I have NO experience in this area!

This is NOT in my comfort zone!

But God gave me Emma. And I love her. When I was pregnant and they told me there was about a 50/50 chance that Emma would have some sort of syndrome, I of course prayed that she wouldn't. But God has since then helped to realize that the prayer I was really praying in my heart was "please keep my life easy. don't give me a situation that makes me uncomfortable." I don't think God is too impressed by those prayers.

So, Lord, give me your eyes and your heart for those I used to avoid.

I think I'm learning that growth is hard because it forces you to see your own short-comings. When you pray for God to make you more like Jesus, it's not like you're going to wake up one morning and the "out-casts" of our society aren't going to make you uncomfortable. If God wants to get you comfortable with the ones He wants you to have a heart for, He's going to surround you with them.

I went to the CdLS foundation website again today to search for another family in the area that I could connect with. There were pictures of kids on the website. They are cute and precious kids! I just didn't have the right eyes before.

Wednesday, January 21, 2009

Monday, January 19, 2009

You either laugh or cry ... so let's play a game!

***update: two confusing things have been brought to my attention: 1) just comment as usual. I know I have some non-blog users reading so I tried to spell out how to comment for those who hadn't before and apparently I was confusing ... sorry :) 2) Josh asked me if I was really depressed when I wrote this post. NO! I seriously see the opportunity for humor in those funny things you think about later that you *should* have said in a situation ... so please, no pity, just humor!



ORIGINAL POST:
So I know Emma is tiny, but seriously, people!

In the last 3 days, I have gotten 4 seperate comments from strangers (yes, I admit, we took her to IKEA tonight ... ) about Emma. 3 of the 4 comments were from women who saw me holding Emma and then saw her move and squealed with delight - "Oh, my goodness! I thought she was a doll! She's so tiny and adorable! Look at all that hair!" I realize that her eyebrows and hair and proportions may not be typical, but what grown woman is carrying around a doll snuggled into her shoulder?

However, the 4th was a man and more to the point ...

"Is that a real baby?"

"Yes, this is my Emma."

"Then what's the cord for?"

Now, it's not that I have amazing self control or so Christ-like that my meekness shines through in moments like this; I'm just too chicken to be rude to people who deserve it. I hate confrontation.

So here's the game - and the goal is to make me laugh! What do you say when someone asks if your precious little girl is a real baby?

Yes, for some of you this might be a new thing, commenting on a blog, but I have my blogger options set so it's really easy. Click where it says "280 comments" (i'm being ambitious!) at the end of this post and leave your comment. You don't have to have a Google account, just click where it says name/URL and leave your name (or nickname if you aren't ready to be "published"), you don't have to have a URL.

And rest assured, I'm a big chicken, so be as crass as you want (keeping in mind that this IS a family blog) and I promise to NEVER say these things to a real person, no matter how insensitive they may be.

Come on, people, I know you're out there - MAKE US LAUGH!

Holy buckets!

A shout out to my new friends.

I am amazed at the stealth of the CdLS blogging community! To quote MckMama, you guys are like wolverines! In a good way ... that sounded wrong ...

Here's what i mean: thanks for your comments. Within hours of announcing our diagnosis, I have been contacted by several sweet people I don't know wanting to share their stories. I can't tell you how much I appreciate it!

I am looking forward to sharing our story and getting to know your little ones as well!

Sunday, January 18, 2009

Ode to my husband

I feel really badly. Josh's love language is gift giving and I didn't even get the chance to get him so much as a card for his birthday this year because even though Emma goes to church I still am not willing to take her to a germ-infested store.

So this is the best I can do this year. It's a couple of days late because I keep trying to work on it without him knowing.

Josh will be totally embarrased by this, but, honey I LOVE YOU!

I love how you never let me get away with anything.

He calls me out on all those "woman tricks" we all try to pull. He openly tells me when I need to back down and let him take the lead. He knows that Biblical "submission" (I hate that word, but I want my man to be the head of my household ... so for lack of a better word ... ) does not come naturally to me and he tells me when I need to back down and let him lead. He calls me down off my high horse when I need it, which is more than I'd like to admit ...

I love how you provide for our family.

Josh wakes up very early every morning to get to work on time to be able to leave early enough to spend significant time with the kids before bed time. I know this would not be his first choice, but he does what he needs to do. And, truth be told, his job is not his passion in life, but he recognizes that he supports his family.

I love how you always put your family first.

Josh went to all of my appointments when I was pregnant with Emma. He knows when we need to leave an outing, no matter how fun it may be, because one of the kids needs to go to sleep. His hobby IS his kids.

I love what an amazing father you are.

My husband is such a fun daddy, but if discipline needs to be done when he's around, he's not afraid to step up to the plate. My children LOVE their daddy and he loves spending time with them. It warms my heart and makes me fall more in love with him every day. I will never forget the day he announced that bath and bedtime were HIS time (I'm allowed to come in for prayers, but then I get kicked out and he reads and ... um .... sings with Charlie)

I love how you support me.

Even when Charlie was very small, he understood that I needed to get out and do my thing and so he'd take him while I went to orchestra. He encouraged me to play with the worship team at CPC and was my biggest cheerleader when I felt like I was hitting wrong notes more than right ones after taking a break from playing when I had Charlie. Josh is good at encouraging me to use my gifts.

I love what a servant you are.

You want to really help Josh feel good one day? Ask him to help you. His gifts and passion involve picking up a shovel when it's snowy or a hammer and screwdriver when something needs fixing. He has SUCH a servant's heart and I LOVE that about him!!

I love that you are a rock.

The Duluthians will get that reference ... the point is that real men aren't afraid to cry but they will pull it together and be a rock for you when you need it. Josh and I have taken turns falling apart several times in the last 6 months, but God has given us each other and by His grace we usually don't both lose it at the same time! :)

There are so many more reasons why I love this man, but I think I've embarrassed him enough. Happy birthday, baby! I love you so much!

Friday, January 16, 2009

ok, i'm ready to tell you a story

we just got Emma's genetic tests back. She tested positive for a syndrome.

Before I tell you about what it is and how we are doing and all that, I want to tell you about something that happened about 2 months ago.


Remember I said the day of surgery was the hardest day of my life?


I woke up that morning still over at my hospital and had to wait for nurses and docs and stuff to round to be discharged. I displayed the peace and patience of Christ ... really ... I promise ...

Surgery was supposed to be around 1, I think, and we finally got over to NICU around 11.

An hour or so before surgery, a geneticist stopped by. She explained that Emma would likely need a transfusion during surgery and if we were going to do blood tests those tests had to be done before that.

So she explained what she was testing for. She showed us traits of our baby girl that made her suspect the syndrome. Then she explained that only 60% of kids with this sydrome test positive on the blood test so even if the test came back negative she would do a clinical diagnosis. Eventually she printed off her checklist that she would use for that diagnosis so that we could go through it ourselves. It was obvious; no matter what the blood test came back as, she has it.

I was crushed and asked the first question any parent would ask in that situation: would there be cognitive reprocussions? yes

Sign these forms so I can run the tests, have a happy surgery day!

No, the genetics doc was not that insensitive, but SERIOUSLY? Did it have to be today? Did no one mention to you that my daughter was going to be sliced open in an hour and that I probably had enough going on emotionally right now????

Ok, so here's why I'm telling you that story: I'm choosing to sort of announce this today, but we've known for awhile.

So, mostly for our friends IRL (in real life ... or my mom's friends in real life or whoever), I kind of wanted you guys to know that even if I haven't told you about this already, I knew when we laughed in Bible Study last week or when I was smiling while I introduced you to my daughter. And when you told me she was beautiful, she already had it. Nothing has changed, other than some letters on her medical chart.

I just wanted you to know that it stinks that she's going to have some struggles and that we're sad about that, but we're not shocked or crushed or in the initial stages of grief over this.

So, on to the nitty-gritty ... It's a condition called Cornelia de Lange Syndrome, named after the doctor who first diagnosed it. It's a genetic condition caused by a mutation on one particular gene that causes all sorts of body systems to be just a little bit off.

Emma will always be small and will probably have some distinctive facial features her whole life.

The range of cognitive abilites of people with this condition is huge. Some have normal intelligence, others are profoundly affected. We just won't know ...

Please do me and yourself a favor and don't Google this too much ... because there's such a huge range of characteristics of people with this syndrome, you'll come up with some pretty depressing stuff. Let's just say that we're grateful that Emma has ten fingers and ten toes.

I will post one link here if you're interested: http://www.specialchild.com/archives/dz-010.html
we're really doing pretty ok right now. we're glad we have an answer, because if the blood test came back negative we would have sat in limbo for quite some time waiting for people to analyze when Emma first reached out for something or crawled or whatever. i'm glad i don't have to go about a diagnosis the hard way. this is definitive and we're grateful for that

i cling to the miracles we've already seen. i know that He has a plan for her and that she is fearfully and wonderfully made.

Tuesday, January 13, 2009

ok, who prayed? :)

Best morning ever!

Emma's poop is back to normal. And she even SUCKED on a pacifier during her morning tube feeding this morning! She's been asleep for almost 4 hours now. Praise God for a good Emma morning.

And Charlie (who is also asleep - you gotta love it when two kids are asleep at the same time!) and Mommy had a great morning this morning, too. He "read Sam-I-Am to baby Emma" this morning and then was very independent when I was feeding her. When she went down, he and I broke out the art supplies.

Now, having never been an elementary school teacher or particularly artsy myself, I had no idea what to do with this stuff! We don't have an arts and crafts table yet, so I wasn't brave enough for the paints today, but he really wanted to play with the glue sticks anyway. So I got out some placemats and we sat on the floor and ...

What do you do with glue sticks?

Ummmm ... well, if you're me you take the paper that already looks cool and rip up peices of construction paper and teach him how to glue those. It actually went remarkably well.






Then he grabbed the markers and colored all over the creation and told me that he wanted to put it up on the wall. Where he got that idea, I'll never know, but I have always said that the office downstairs will belong to the kids and their "artwork" will decorate the walls. I'll have to figure out a way to get it up there without hurting the wall, though :)

Monday, January 12, 2009

Laughing so hard I'm crying right now!!!

This is a hillarious moment and I only have YOU to share it with, so share I MUST.

I'm listening to Josh putting Charlie to sleep on the baby monitor. Charlie is asking for Daddy to sing Jesus Loves Me and Josh doesn't know the other verses but Charlie does so Charlie is asking him to sing the Jesus loves me when I'm good part and Josh is ... improvising :)

"Jesus even loves me when I'm bad
even though it really really makes him sad.
Daddy doesn't know the rest of the words
Mommy will have to stop singing this part to you"

Sigh
I love my husband


Ok, so anyway, I suppose I should give an Emma update, even though it's kinda gross and I'm sorry about that.
I don't remember where I left off on the story. Emma had blood in her tube last Thursday (which would be like your child puking blood) and then got dehydrated on Friday and then had a really good weekend with the family. Today, I think she figured that I would be bored with just the two kids to myself, so she started pooping blood.

Luckily, both kids had their well-child visits this morning (2 month and 2 year ... how is that possible???) so I didn't rush her in and just brought the diapers to our pediatrician to see. Dr R is testing the "sample" (yuk) for infection, upping her Zantac dose and starting her on a new formula for babies who have milk allergies.

Which of coures means now she can't even have my leftover frozen milk through her tube ... I've made the decision NOT to be depressed about that, but believe me, that's an act of will power.

So we'll have to see how she responds to this new plan. We meet with a GI specialist later in the week, so hopefully we'll get more answers then.

And with all this going on, bottling is absolutely nill. I am trying my best to get her to even suck on my finger, but even that's not going well. Kids FORGET how to suck and then their face and mouth muscles don't develop properly!!!!! Trying not to panic ... doing my best to keep up with OT

But Charlie's doing great!!! :)

Sunday, January 11, 2009

I now officially have a TWO-YEAR-OLD!

Thanks for all of your support regarding Emma's trips to the ER. Yes, tripS ... there were 2 last week. Thursday night we were there until 1 am waiting to find out what was going on with her tummy and then Friday during the day our home health nurse sent us again. I think Friday's episode was dehydration from missing a couple of feedings while we waited to see what was going on with the blood in her G-tube. As for the blood, I'm still not exactly clear on what that was all about. We have a doctor's appt tomorrow, so I'll post more when I understand better. She's fine for right now. She'll keep us on our toes for quite some time, though, I think!

But let's talk about other things right now, ok? :)

Like my son had a birthday! And a family party on Saturday! I have to say, if Josh hadn't been able to take the day off work on Friday I never would have been able to pull off hosting a party, but between him and his family bringing some food down, we had a nice little afternoon.


The man, the myth, the two-year-old!! He got a lined flannel from Grandma and Papa so that he could dress like Daddy on cold days.


Next he got a really cool blow-up catcher and ball (remember his "pitcher up on the mound" stance?), which Uncle Dave spent quite a bit of time blowing up for him. Don't give me that look, Dave, you bought it for him! :)


And when they were done blowing up the catcher, Charlie's INCREDIBLY adorable cousin Ruby hit the jackpot and got to play with that very cool toy the men were just using. Charlie *may* have figured out how to use the air pump right when Ruby was chewing on the end of the hose ... but then we told him to try to find a toy for her in Emma's room that she could play with. Instead of the multiple baby toys available in that room, he brought her Emma's night light. You know, just the boring plug-in kind with a clear plastic cover ... Why do we even bother buying kids toys? :)

Next Charlie opened his present from Papa John and Elaine (Becky's dad and his wife). New Dr. Seuss books! Both Charlie and Mommy have One Fish Two Fish memorized, so we're on to Green Eggs and Ham. This morning over breakfast, Charlie had the book and was saying, "I am Sam, Sam I am" over and over. We are in serious trouble with this boy, he's like a sponge!!!





Uncle Dave reading the book. The look of concentration on this boy's face ... he's taking it ALL in!


Meanwhile, Papa John rocked Emma to sleep ... or perhaps it was the other way around!!

Mommy is VERY excited about Charlie's new art supplies from Auntie Bean. Up until now, Charlie's artistic skills were being nurtured with a very old set of 12 crayons and white lunch bags that Josh uses to take to work. Don't get me wrong, it's very cute that Josh packs his lunch in bags scribbled on by his son, but something tells me that the markers and paints and special paper and stickers are going to be much more exciting for a little dude!




Next came cake (thank you, Duluthians for bringing that down!!) and Ice Cream and sugar-induced comas :) Happy Birthday, Charlie!!
And now, Josh and I will admit to committing the cardinal sin of modern parenting:


Emma is officially a tummy sleeper.
And loving it!
But let's talk about Parenting Habit #212 That I Know I Must Break Soon But Don't Want To:
Babies who get up before their older brothers get to come into Mommy and Daddy's bed for morning snuggles.
It's pretty sweet, though. Something very cool happened last night. Emma woke up in the middle of the night needing nothing but snuggles. Now, this doesn't sound cool and it won't be cool if it continues to happen, but I was thanking Jesus for it last night. See, most of the time when Emma fusses it means Mommy and Daddy need to get some sort of equipment to fix the problem. Hungry? Get the pump. Gassy? Get the vent. And diaper changes are obvious but not relational and she actually seems to prefer going to sleep on her own most of the time (at night at least). But last night she woke up at about 1:30 just wanting to be held for awhile. She DOES love me! Or at least want me or need me.
Does that make sense? I was just saying to one of my friends that I wasn't sure she'd figured out that I was Mommy yet because she doesn't need me to eat and she was rocked in NICU by other people as often as she was rocked by me - so what makes me so cotton pickin special? But apparently she does want snuggles sometimes.
Of course she does, but it was just nice to be reminded.





Friday, January 9, 2009

Good morning!

Very quick post because we have a home health nurse coming soon ...

Emma was in the ER last night. Charlie was having dinner and Emma got fussy, so we vented her (remember the "puking" tube from thanksgiving? :)) and the normal bubbles (burps) and milk (urps) came out. But then she stayed fussy and blood started coming out of the tube. Not a lot, but ANY amount of blood coming out of your baby's belly is too much.

So they did an x-ray and an exam and lab tests to make sure that red stuff was indeed blood and she's ok. They gave her a prescription for Zantac to help with reflux

I'll post more when I understand better what happened, but for now I think this is just another thing to add to the list of things that is scary but "normal for Emma" sometimes.

We're exhausted, having been out past 1:00, but we're doing ok

Happy Birthday to Charlie! :) he had a Nana's house sleepover, so he's doing great

please pray for peace and rest for our family today? love you all

Wednesday, January 7, 2009

Of bonks, bottles, and bellies



oooh, i am clever with that title, no? :)


First off: bonks. Charlie will be continuing the tradition of looking like we abuse him on his birthdays. He's got a good goose-egg right under his hair-line (not so obvious in the pic, but it's good and there) and his nose looks awful. How did this happen, you ask? I am the worst mother ever (first and only time I'll ever feel that way about one of my children's owies, right????)


I was picking up Charlie at my mother's last night and after being inside for awhile to feed Emma, I went out to start the car. I knew Charlie was waiting for me right inside the door, but I didn't realize he was actually starting to push the storm door open to look for me and I pulled it open to walk in. My boy tumbled out the door with a DIRECT face-plant onto the concrete. I think, luckily, his hard forehead took most of the blow and his poor nose only got scraped, but there was a lot of screaming (on his part) and tears (on my part). We're all ok now, but that one definitely took a few years off my life.



Next: bottles. Or lack thereof. Emma is not doing well. I thought we were going slow and steady with a couple of mls a day from the bottle (by the way, for the non-metric types, a couple of mls is best measured by those tiny medicine droppers you get at your pharmacy ... small steps), but apparently even that is not going as well as I had thought. She's developed a bad habit of sticking her tongue up into her palate and gumming on the bottle to get those tiny amounts out (which is possible with the Haberman bottles we're using). Our OT appt today was a bit de-moralizing for me, but the therapist did say that this is normal for it to be going so slowly and that this is usually the most frustrating area of OT. I'm trying to have patience ... sigh.



Finally: bellies. As in, to sleep or not to sleep on them.

How my generation ever survived being put to sleep on our tummies as babies, I'll never know. And those "carseats"! And metal crank swings! And "walkers" with wheels so we could fall down stairs! And goodness knows whatever else you parents put our lives in danger using!!!!


(we all hip with the sarcasm, here?)


But honestly, I have a tiny newborn in the house who is more vulnerable than most, so this is a hard decision for me. EVERY nurse, doctor, and specialist who gave us discharge instructions (including her DIETITIAN, for crying out loud!) gave us a pamphlet or handout or something about putting babies to sleep on their backs to prevent SIDS. And Emma was "sleep trained" in the NICU, so she's not opposed to sleeping on her back ... however ...


When we saw Emma's ENT about her cleft palate, he described her oral anatomy as Peirre-Robin Sequence. This is not a syndrome and is not the answer to our genetics question; we're still waiting on that. This just describes the type of cleft and jaw structure she has.


So like any neurotic mother, I Googled that term and found multiple web-sites stating that babies with Peirre Robin NEED to sleep on their stomach because they are prone to having their tongue block their airway and suffocate.


So do I trust the great medical resource of Wikipedia or dietitians carrying pamphlets?


We've tried both ways (she's on her stomach next to me right now in her bassinet) and she makes funny airway noises either way (which is normal for a baby with a cleft). But she tends to make fewer airway noises on her tummy.


So we're darned if we do and darned if we don't. Ask us how much sleep we're getting as we both jump every time she sighs in her bassinet during the night.

So tonight, for the first time, we're letting her sleep on her stomach all night.
God isn't going to abandon her now. I'm not actually THAT freaked out about this. God is watching over her, it's going to be ok regardless of what we decide.
But we're so programed to think that a baby WILL succumb to SIDS if they sleep on their tummies that it makes us a little nervous.
Do me a favor? If you feel so inclined, post a comment telling me I'm not a terrible mother for letting my baby sleep on her tummy? :)
can we just make it clear that cats and JOSH have a hate/hate relationship? That was HIS post. I like cats, they just don't like me ... and you have to admit that sometimes the silly notion of cruelty towards CARTOON cats is funny :)

also, while i'm here and my kids are still sort of asleep, i'll give a shout-out to Josh's cousin, Heather. She made a very very sweet little book for me to put pics of Emma in with exerpts from this blog (which seems to have taken on a life of it's own!! remember when it was just for out-of-town relatives to see pictures of Charlie's latest bonks? speaking of which ... but I digress.)

check out a very sweet little book: http://heatherscraftycreations.blogspot.com/2009/01/miracles-book.html

Tuesday, January 6, 2009

One summer afternoon

This one is for Melissa. It's good on so many levels......Diet Coke and Mentos and memories, and cats and I seem to have a hate/hate relationship, so I'm all about launching them.....

Smile!

Monday, January 5, 2009

Yes, I ramble a bit, sometimes ... sorry.

(two kids asleep at the same time - life has never been better!)

So I need to reflect on this and I'm just going to apologize up-front to the men who read this blog: there will be talk of boobies, but not the fun kind :)

I'm done making milk. I didn't realize that not being able to pump as often meant that my supply would go down so drastically, and I wasn't getting enough to make it worth my time away from my kids to go and pump. Emma's been getting formula from the beginning; she's fine. But I'm struggling with this whole thing. I'm realizing that I didn't have as much time to reflect on the cleft palate as I did on all the other stuff and we were so overjoyed that she wouldn't need heart surgery that we didn't pause to think of all the implications of a cleft palate. The most basic of which is that I, as a mother, need a machine to feed my baby. I can't breastfeed, the most basic of all bonding moments with your baby. I'm remember those moments with my first-born ... I had a really positive experience breastfeeding, which I know is a blessing not all mothers have. I can't get her to bottle much, either (which is not abnormal with her situation and we knew that would be a long journey, but it stinks). Even when she does take the tiny amounts that she gets from a bottle, I can't snuggle her to feed her like a normal caring mother would. I have to hold her upright in front of me so the milk runs down her throat instead of up into her nose which could cause her to aspirate and get pneumonia and so that I can watch her throat to see if she's swallowing enough and breathing enough and not turning blue. IT'S NOT A BONDING EXPERIENCE! IT'S POTENTIALLY DANGEROUS FOR HER AND STRESSFUL FOR ME BUT CRUCIAL THAT I DO IT! So, as her mother, I can't bond with my infant daughter in that way that most mothers do.

And don't get me wrong, I do feel like I'm bonding with Emma, it's just slow and not the same.

(special note: all done with boobie talk)

But that makes the stress of the fact that bottling is going so slowly even harder right now. She sometimes takes 5-10 mls like a rock-star, other times the bottle hits her lips and she screams, either because she's too tired or too hungry or both. This screaming is really hard for me. The correct thing to do at that point is to hook up the pump. And yes, of course, I snuggle with her at that point and whenever I have the pump hooked up to feed her, but in the wake of bottling failure, it's bittersweet.

Yesterday after church was one of those times. We got home and both kids were a little late for lunch time, which meant both were cranky and hungry and tired after church.

Now, I'd like to tell a story here and ask a question, but first I need to explain a phase Charlie is in. I'm sure all parents will remember the moment when their precious child learned how to STALL. Charlie knew naptime was approaching quickly so he was making lunch take as long as possible. And I'm sure it's not uncommon in "churched" children to have stalling (or any other misbehavior, actually) involve the word "Jesus." Do all churched kids go through a phase where saying "Jesus" is a get out of jail free card? "I don't want to go to bed, tell me another story about Jesus?" Charlie's favorite is when he doesn't want to eat something, he'll ask to pray to Jesus again.

(side note: I very clearly remember being 15 and my 13 year old brother and I invoked this tactic by debating pre-tribulation vs post-tribulation rapture with my mother until 2 am ... but I digress)

Yesterday he didn't want to finish eating because then he'd have to nap and I had tried to bottle Emma and she was screaming so Josh was trying to calm her down while I set up the pump. All parents out there smiling fondly at memories of moments like this? Good

So I'm standing by the sink and I hear Charlie say "dear Jesus." Now, usually it has been our response to say "take a bite of peas and then we can pray again" (although I have been VERY tempted in the past to say "JESUS WANTS YOU TO EAT YOUR DARN PEAS!", but I've been good).

But then I heard Charlie say something I hadn't heard before: "Dear Jesus, thank you that we have everything we need." I don't think I've used that expression before in front of him, it's not one that's in our daily prayer routine.

Then he continued: "Thank you Jesus for Mommy, thank you Jesus for Daddy, thank you Jesus for Emma" (all normal)

"Thank you Jesus for Emma's pump. Thank you Jesus for everything we need. Amen"

That phrase was something I've never heard before, and I certainly have never heard anyone in the house thank Jesus for Emm'a pump. Hmmmm...

Now, again, I KNOW he was stalling.

But that made me pause and think.

Thank you that we have a pump and medical tools to nourish our little girl. Thank you that we can provide for everything she needs. Thank you that she was born in the year 2008 where medical doctors can fix hiatal hernias and put a tube in her belly to feed her when she can't eat the normal way.

It turned my day around.

So here's my question: Anyone at Valley know if "Thank you Jesus for everything we need" was taught in Sunday School recently?

I guess either way, God spoke to me through my child yesterday, whether Charlie intended it that way or not.