Monday, March 30, 2009

No Not Me! Monday this week ...

... although if you look at last night's post below, there is some great Not Me! fodder about how the Charles Monster is either in his pj's or not wearing pants in every single picture ...

But the hostess of Not Me!Mondays is in desperate need of prayer instead.

Many of you know that I have an invisible friend from the land of blog named MckMama. Her little boy, Stellan, was born just a few weeks before Emma in the same hospital with the same team of cardiologists looking on awaiting heart failure ... which, we all know by now, never occurred in either case. (let me underscore that I have not met this family in real life, but her story has touched me deeply because it so closely parallelled Emma's, even though the specific heart concerns are different.)

Stellan had heart issues in utero. They mysteriously disappeared before he was born and his heart has been just fine since birth. Now, 4 months later, those heart issues have re-appeared.

Please pray for this little baby fighting for his life in ICU?

God bless you all today!

Sunday, March 29, 2009

It's been awhile since I've posted pictures!

Things are back to "normal" ... or "new normal" ... or whatever ... around here :) Thanks so much for your thoughts and advice and prayers and such with the difficult surgery and healing with the tube change. Emma isn't leaking nearly as much lately.

And my kids got lots of love from lots of people in lots of areas of my life this week and weekend. I won't bore you all with the details, but let me just say thanks to those of you who loved my kids this week. You know who you are :)

Ok, on with the strangeness that is our household ...

This is Charlie and Emma's game de jour. Charlie lies on his back, Emma sits on his stomach, and Charlie gives her a tummy ride by taking deep breaths and making strange noises ... he thinks it's hilarious, she smiles when he smiles, and it makes me laugh, so strange as it may be, we're having a good time, right? :)





Next, we have Chef Charlie. His latest hobby is .... um ... "helping" in the kitchen. You can't put a bagel in the toaster these days without assistance from the little man. I thought him grating cheese was cute.





Charlie also has the very important job of decorating Daddy's lunch bags he takes to work with him. His coloring and artwork have gotten very sophisticated :) He makes strange scribbles and then looks at them for a minute and announces, pleased with himself, "that's a G!" or "that's a S!" Sometimes the scribbles even look like what he says they are, but usually it's just yet another way he's trying to be too grown up too fast. Where did my baby boy go????



And finally, grab your glass of fine Chianti, for you are about to be serenaded once again by the young protege' Charles and his clearly ... umm ... advanced ... skills .... yeah.


video

It's "Our God is an Awesome God," really, I promise! :)

Wednesday, March 25, 2009

Looking up

No big news this evening ... I'm mostly just posting because, as the DH pointed out, everytime we open the internet there's something depressing as our most recent post. :)

Things are really looking much better. Emma's site is healing from the trauma of switching the tubes and that has helped immensely. I also finally got an appt today with a ostomy wound nurse who walked me through some of the things I was still unsure of with the button (i'm choosing to move past the fact that these things were not explained sooner ... :) ). The nurse seems to think the leakage (which has slowed down considerably) is from the trauma of the surgery and should clear up in a couple of days.

On the plus side, though, Emma is getting to be so big! She's coo-ing and giggling more and more and she's sucking on her hand more often, too. She's even hit 8 lbs, 8 oz! Both of my kids had really good days today, and I'm thanking God for giving me such wonderful beautiful kids.

Sunday, March 22, 2009

Just need to vent

Thanks so much for all of your advice - things are SLIGHTLY better ... but I'm still ridiculously frustrated.

Ya know that feeling where you've got a computer, you've had it for awhile, it works just fine and you do what you need to do on it and life is grand but then this young punk comes in and "fixes" it to "make it better" and all of a sudden you're not really sure how to check your e-mail and, yeah that's great that I can see the weather in China in 2.5 seconds but where did the pictures of my kids go?

That's how I feel (and btw, I'm not 40, even though I know that last paragraph made me sound a lot like my mom ... :) love you mom ... she's not 40 either ... i digress ...)

Except it's a million times worse because it's about FEEDING MY DAUGHTER!!!!!

I keep picking her up after a feeding and her whole front is soaked because her button has leaked. We've had a couple of successful feedings today where we've wrapped the thing in gauze so tight that nothing could come out if it wanted to or I've held her in a super awkward way to try to have gravity help the situation.

She doesn't relax in the cuddle/cradle hold that you would normally feed a baby in because of her airway issues (and that's not what she's used to). So I've been snuggling her if I'm feeding her while she's awake by lying her on my chest. Now with this stupid button, it's like if there's any pressure on it at all it leaves enough of a gap between the balloon and her stomach that it leaks.

Yes, we've tried inflating the balloon more. It helps a little, but not enough

So I have to hold her in this awkward sitting position to feed her, or I have to pack the thing with gauze which takes time and she doesn't seem to find that terribly comfortable either, or if she's sleeping we just pray she doesn't move in the wrong way. We haven't really figured out why she wakes up soaked sometimes and sometimes not.

And to make matters worse, Charlie is REALLY picking up on the stress. I don't know what I'm going to do if we don't have this figured out by the time Josh goes back to work on Tuesday. Thank God he took the day off tomorrow.

We've called our GI surgeon and he gave us the "sometimes this happens in the first couple days of healing around the button and here are the signs of dehydration to watch for if you thing she's not getting enough food" answer, which I'm not really satisfied with. We're going to call again tomorrow.

Again, thanks for all the advice but I have to say right now I'm just exhausted and needed to whine. Do me a favor? Don't leave any more advice on this particular post? I love the help and support usually, but right now I just needed to vent. Thanks you guys, you know I love you!

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

I do have to say, though, I've been trying really hard to follow Pastor Dave's words this morning. He was talking about never being satisfied with all the world has to offer and how we whine about our cell phones being slow when we should be marveling at the fact that we have this little device in our hands that could let us do any number of incredible things. So tonight I tried very hard to thank God for....

Indoor plumbing
Running water in the bathtub
Washing machine and dryer
My husband's job
The fact that my husband's job lets him take time off
The fact that my husband doesn't have to travel for his job (much)
My husband in general
My mother helping us today
My in-laws helping us this weekend
Doctors that have saved Emma's life countless times
God who has ACTUALLY been the one saving her life :)
The weather

I'm trying very hard not to let this get to me ... not succeeding, but trying really really hard

Thanks for listening :)

Saturday, March 21, 2009

ARGH!

Sorry to ask another question out here that only applies to a few people - I have joined the Yahoo e-mail group, too, so hopefully I'll stop putting things like this on the blog soon :)

We just got the MICKEY button yesterday and it's leaking!!! A lot! What are we doing wrong???

We've had to change her sheets twice in the middle of the night and I'm worried that she's not getting enough food.

We've gone to the mickey website and we think we're locking it in place right, but it's so hard to tell what the position of the button is when she's sleeping because she's a tummy sleeper. But I thought that shouldn't matter! Wasn't the button supposed to be easier?

very stressed ...


*** Update: I did talk to a GI doc (finally ... having trouble finding a GI doc cuz our original one was the guy who brought up the "ethical decision of keeping someone alive using a machine" ... but that's another story ... it just complicates this one ...). We're wrapping the button in gauze and inflating the balloon a little more full so it's tighter. The thing that's REALLY stressing me right now is the fact that this is NOT easier than the PEG. I thought I was supposed to LOVE the mickey button???? Anyone know if this leaking is a temporary thing? I've heard about leaks in the valve and that's not what we're looking at here, it just seems like the button is way too loose and food is leaking out from her stomach around the balloon. Is that something others have experienced when the button was first placed and it works ok now?

Friday, March 20, 2009

Emma's Surgery

We're home from surgery. Emma is doing great. Mom is not doing so well.

We got to the hospital early this morning as planned and the first surgery of the morning had issues getting started, so Emma was moved up in line, so we met with the surgeons and the anesthesiologists, and off she went to surgery. It was a little easier letting her go this time, but not much.

Our hospital has a waiting room with a computer monitor that tells you where you're kid is in the whole process. It was taking a long time for them to get into the OR, which is becoming the norm for Emma. Quickly after her status changed to "in surgery" her ENT doctor was out to see us. Apparently her ear canals are too small to allow for ear tubes. He said he could have put them in, but taking care of them would have been very hard and it wasn't worth the risk. So unfortunately, Emma does not have ear tubes. We will reevaluate the need and ability to have them at a later date.

So we sat back down and a short while later her gastroenterologist came to see us. He said everything looked great, and everything went great, and he gave us some pictures of her stomach and esophagus and small intestine. They looked good to me! No seriously, with her reflux issues, it's good to see that there is no damage happening in there.

So Emma went the PACU - Post Anesthesia Care Unit - to wake up from the drugs and we went to breakfast. After about an hour we were reunited with her and off to another recovery room. There she was monitored and we started feeding her again and were taught about the new button.

Then the anesthesiologist came in to talk to us. I kinda thought this was odd, as the surgery was over and Emma was sitting on my chest sleeping away as normal. The doctor informed us that they had a hard time getting the breathing tube into the right place and that's why she was in pre-op for a long time. It turns out our ENT and not the anesthesiologist ended up placing the breathing tube. This was not terribly surprising for us as Emma is tiny and they had issues intubating her during her first surgery.

Then the doc went on to explain that Emma had a hard time breathing when she was waking up when they took the breathing tube out. He had seriously considered re-intubating her and admitting us to the NICU. Apparently she was breathing very deeply, and this was actually causing her to get less air and not more as she was collapsing her esophagus with the heavy breathing. I don't really understand it, but to say it was bad. He said this went on for about 40 minutes before she calmed down and started breathing effectively on her own. I am very thankful that they decided the other surgeries could wait and they spent the extra time with her to give her a chance to breathe on her own and not admit us.

So once Emma had eaten and not shown any issues, we were on our way home. We got to the hospital around 6:30am and were out by 11:15am.

Mom is bummed about the ear tubes and worried about the speech delays that are more likely if Emma can't hear well. She is also traumatized by Emma's breathing issues, and not to mention a little exhausted. So Mommy and Emma and Grandma and Charlie are sleeping, and I'm........here!

Thank you for all of your prayers and support! Our little angel definitely had an angel looking over her shoulder this morning.

Tuesday, March 17, 2009

Quick prayer request

haven't put one of those up in awhile ... :)

We had Emma's pre-op appt this morning and she's cleared for surgery on Friday. She's getting ear tubes and a MIC-KEY button. Both procedures should be short and no big deal, but she will be under general anesthesia so if you could pray for everything to go smoothly I would appreciate it.

And also, I'm struggling a little with the feeding issue again. Emma had a pretty good weight gain right before she got sick, which would ordinarily mean that we would calculate a new amount to feed her, but she wasn't taking the amount of food that we were giving her well because she was sick, so we didn't re-calculate feedings. I didn't bring up the issue again after she got better. For the past week or so she's been pretty fussy, but I just assumed that it was because she was getting to that age where she wanted to always be social and carried around and not left in the swing and such (btw, remember my concern about attachment issues???? holy cow! it's like that old saying about not praying for patience because God will give you something to wait for? don't worry about attachment because your baby will be plastered to your hip for the next week!). But today we weighed her and calculated her calories ... let's just say I feel guilty. She's supposed to be getting 100 cals per kilo of body weight and the amount we have been using only came out to 80! (get it? she weighs less, we feed her less, she gets bigger she needs more food?) Stink! I haven't been on top of this like I should have, I knew she was fussy and I didn't do anything about it! Mother's guilt! I know, I know, Charlies fall out of doorways onto concrete and Emmas sometimes get a little hungry and it's all better now and this too shall pass and all that, but I'm struggling a little. It's hard not to feel that old "it's not fair, this isn't how it's SUPPOSED TO be" thing creeping back. "Normal" babies self-regulate this stuff ... they get bigger, they get hungrier, they eat more, Mommy's boobies produce more .. no one needs a calculator!!! :) But it's not a hard problem to fix and Emma is generally a happy smiley baby so I can't complain too much, I just need to stay on top of things!

But Praise God for beautiful weather!!! Doesn't sunshine and warm air and that SMELL of spring just make all the difference?

Monday, March 16, 2009

Not Me! Monday




Here we go!

I am NOT wearing maternity jeans today ... because my baby is 4 months old and that would be pushing it ... not me!

I have NOT decided that since Emma screams through the getting dressed process in the morning anyway, 30 more seconds of screaming is a small price to pay for real, honest to goodness PIGTAILS!

And most importantly, since I was NOT awakened this morning to the sounds of two very upset children crying at the same time (because she was covered in poop and he was covered in pee ... at the same time ... COVERED ... glad that DIDN'T happen ...), I did NOT convince Charlie that the best way to spend his morning would be to go "swimming" ... in the bathtub ... and even if I HAD done that, I would have DEFINITELY supervised him the whole time and NOT left him "swimming in bubbles" by himself while I attended to a sad Emma and disgusting laundry. Nope! Not Me!
So what did you NOT do this week? :)

Thursday, March 12, 2009

oh, the weather outside is frightful.....

so Mommy goes to great lengths to keep herself and the kids entertained ...





Emma Bear's hair is getting longer and longer and Mommy is working on ponytails (btw, Charlie informed me yesterday that *I* may call her Emma Bear, but HE calls her Princess Pea ... yessir, Mr Big Brother!)

As you can see, Her Highness is tolerant but not amused :)



Mommy and Charlie made peanut butter cookies (easiest recipe ever! 1 cup PB, 1 cup sugar, 1 egg) and Charlie decorated them with chocolate chips.


That's my boy!












Don't Child Protective Services me, this is not child labor, the vaccuum is SERIOUSLY Charlie's favorite toy and he actually does a pretty good job!



I'll even let him do the dishes!!







As long as he will let me play with his hair!






Remember the wink? This is, once again, the closest I could get to catching it on camera


And now the BEST part! Mommy lets me clean up!














Oh, boy. Spring had better get here soon or I'm going to have him making macoroni art or something (no offense to any elementary art teachers out there, but seriously? Gluing dry pasta on stuff? why?)

have a blessed day!

Monday, March 9, 2009

So proud of my kids!

We had our visit from the school district today (I've mentioned this before and some have asked about Early Intervention - this may not be the case in other states, but in MN Early Intervention is done through the school district, so yes, we are recieving in-home services)

Emma showed off! Not at all fussy (except for when Charlie asked to snuggle her and may have either squeezed too tight or pulled her hair accidentally - not really sure which), sitting on my lap or lounging on my chest holding her head up like a big girl! Our teacher was very impressed at her progress. She said her arms are still a little stiff, which is probably because we've been a little lax on our PT exercises (she doesn't much like them ...)

She wanted to see Emma grab onto something and Charlie took his cue :) He grabbed her a toy and held it up to her hand and she grabbed it. Then, for the first time, Emma moved the toy into her mouth! Pretty cool :)

(Of course, in tribute to Not Me! Mondays, I did NOT briefly think to myself, "Oh, come on, the point of these visits to do address developmental delays! And you pick NOW to show off?")

But obviously speech and eating are going to be her big issues in the short term, neither of which can be addressed right now any more than what we're already doing. Our next visit is after the audiologist re-checks her hearing to see if the tubes in her ears address that issue as they expect it will. It will be interesting in a couple weeks to see if there's a big difference in her sleeping and tolerating a two-year-old if the ear tubes improve her hearing!

Sunday, March 8, 2009

Inseperable



He really loves her.

Mommy thought they'd be so cute dressed the same.......



Charlie was a little proud of the whole thing.......


"Yea, my big brother can read. He's pretty cool."
"I'm working on my new doo."
Emma started to wonder how long this "fun" was going to last.....


Finally Emma had to put an end to it......


"You stop now and no one has to get hurt!"






Friday, March 6, 2009

Random updates

Just wanted to tie up a few loose ends (I actually logged on intending to post ADORABLE pics of my kids in matching white shirts and jeans outfits but my computer and my camera are apparently not on speaking terms, so the pics will have to wait)

I realize I complained about Emma attachment issues and then haven't mentioned it since - Emma is doing really great with that. She still hates her bath, but she loves massage time after words, so I would not guess that there are sensory issues there. She and Josh have also sort of started a tradition that when he comes home from work they talk while I make dinner and then she falls asleep on the "Magic Daddy Chest" for a little while. So snuggling is definitely happening - even if she's totally different from Charlie in the "rock me to sleep department," I'll take it! Charlie was ... ummm ... a very high maintenance baby :)

And Emma is almost over her cold. We survived!!! Yea!!!

And speaking of the Charles Monster - he's also doing very well. I complained that he was being TWO one day ... yeah, he's TWO, but in general he's a well behaved, sweet TWO. Don't you find that behavioral issues ebb and flow? It's like they are keeping track .... "hmmmm, I haven't been punished for anything lately, maybe they have decided that's not something they do anymore ... I better do something to find out!" ... a few severe beatings (KIDDING!) and he's back in line :)

We have our gal from the school district coming on Monday. We've been on an every-couple-weeks schedule with her up until now because Emma's so little it's not like there's a lot we should be working on, but I have a feeling she's going to want to start doing more soon.

And Chris and Tam have an ADORABLE little two-year-old girl!!!!! Click on the Fladung's blog in my blog roll and just TRY not to fall in love with her, I DARE YOU!

TGIF, folks!

Thursday, March 5, 2009

CdLS question

two questions, actually. first, have i thanked you all profusely enough yet for reaching out to me and being my little emma support group? if not, thanks to all of emma's new friends!!!!! i seriously don't know where i would be emotionally right now were it not for all of you!

and then my actual question: emma has surgery in two weeks for ears tubes and a mickey button (double-dipping with the general anesthesia). i have heard from many people that the ear tubes are no big deal and that there is virtually no recovery from that, what about going from the peg tube to the mickey? i'm asking because we are trying to plan other things the following weekend and i'm wondering if emma will be out-of-sorts a week after these two procedures.

thanks for being there so i can ask such silly questions!!!!!!!!!

Wednesday, March 4, 2009

Pray with us?

Our dear friends Chris and Tam are flying as we speak to Utah to adopt a little girl!

Please pray for safe travel, finances to work out, and bonding for the new family. This poor little 2 year old was dropped off 4 days ago by her birth mom (I can't imagine), so she's had a hard time already. Praise God that He brought Chris and Tam to her.

I'll be haunting my computer all day waiting to see pictures!

Monday, March 2, 2009

A recitation by Charlie

This is probably not all that interesting to anyone but the grandparents :)

video

(for those who aren't familiar with Sandra Boynton's "Going to Bed Book")

The sun has set not long ago

Now everybody goes below

To take a bath in one big tub

With soap all over,

SCRUB SCRUB SCRUB!

They hang their towels on the wall

And find pajamas big and small.

With some on top and some beneath

They brush and brush and brush their teeth.

And when the moon is on the rise

They all go up to EXERCISE!

And down once more, but not so fast

They're on their way to bed at last

The day is done

They say Good night

And somebody turns off the light

The moon is high, the sea is deep

They rock and rock and rock to sleep!

Sunday, March 1, 2009

Such a wonderful Saturday

Moments like this Saturday morning happen more often than I blog about because it's hard to supervise and take pictures at the same time, but with Josh around Saturday morning, I can share this one with you!





Yes, Charlie is wearing this pj's and snowpants ... what? is that abnormal?


kidding ... Charlie and Daddy played in the snow earlier that morning.



So anyway, he's coloring and Emma is practicing her sitting on the chair next to him




She's getting so strong! She sits pretty steadily somewhere with someone only holding an arm or something. When did she get so big girl? :)




Now whenever Charlie is doing, well, anything, he asks for Emma to join in: "Emma sing with me?" "Emma play cars?" "Emma ride on my tractor and I push her?" (danger, Will Robinson, danger!)




So he wanted Emma to color. He is SO PATIENT with her! He knows that she's just learning to grab on to things, so he brings her a marker and puts it up to her wrist right below her fist.




With all the excitement of someone watching a sporting event, he squeals "Mommy, she opened her hand!" And he gently put the marker in her palm and she took it!




"Oooh, hey, look what I have! And if I wave my arm around, it moves, too! Fascinating!"


"Hey, where're you goin, big brother?"





And of course she needed another one:







I LOVE these kids! I'm so glad I got a picture of this moment. Charlie is teaching her how to grab onto the marker as she looks like she is just intently learning from her big brother.

And this next part is a little silliness. Someone taught Charlie months ago how to do "Cheers" with a glass, but I don't think Charlie quite gets the limitations of the tradition. He'll ask to do "Spoon Cheers" if we're both eating with a spoon and then we clink our spoons together. This is Charlie and Emma (mostly Charlie, of course) doing "Marker Cheers."





Which she apparently thought was pretty funny.

I'm positive I didn't get this excited when Charlie was first learning to grab onto things. God is using Charlie and Emma to teach me to celebrate. Life is so good if you really stop to look around and see it! I mean, if I hadn't been given a special little Emma, I might have just thought, "yeah, yeah, she's grabbing toys, all kids do that." But now I get the joy of seeing and noticing and watching for MY Emma doing that.

Sorry if I'm not explaining this well. Trust me, it was an incredibly joy-filled Saturday morning for me.