LC's Excellent Entourage of Experts

Over the weekend the bug filled up with fluid. Luckily, as we learn more about her we're able to recognize her symptoms more readily than we once could. LC's pumper (like everyone else's) has fluids coming at it nonstop. Her heart does its best to take in the fluid and send it all where it needs to go, but sometimes she gets behind and the fluids back up and collect around her heart, making it even more tricky to bring herself back to status quo. (My laundry room floor could serve as an excellent analogy for this. Just ask my mother-in-law, who has left us to return to the farm and vowed never to visit for longer than a 3 hour stretch of time again.)
On Friday LC's weight was up to nine lbs, 1 oz. but her energy was in the dumps. No amount of coaxing or physical prodding would get her to wake up or give us her attention. On Saturday it was more of the same, but this time she had large bags under her eyes and her hands were cold and swollen, too. That's how we know it's time for the phone call. If LC won't wake up to Justin's voice to flirt with her dad and her eyes start to look like mine, it's time for medical intervention.
Luckily, we have the single most lovely pediatrician in the world. DR. DEB WINBURN has repeatedly given us and reminded us to use her home and cellular numbers and quickly responded with the directions that flushed out our little blowfish and returned her to her alert and chatty self. She also arranged for LC to go straight to a cardiologist at Children's Mercy this afternoon (an appointment that usually comes with at least a standard week's wait...)
We love her. We adore her. Which is why when we find ourselves in the presence of mediocrity...even if it IS only in the area of social competence...we notice. And it makes it into our blog. And I'm not going to use this cardiologist's name...because i'm working to erase it from my memory...but if you need a cardiologist at Children's Mercy call me first. Because there's one you don't want to see.
Today we were seen by a cardiologist we shall refer to as Dr. Stump. First, she began by criticizing the reasons I gave her for wanting LC to be seen before her next appointment that was two weeks away. She asked me why I continually cancelled appointments with cardiologists. (Well, it's actually because those appointments fell within the time she was HOSPITALIZED IN THE CHILDREN'S MERCY CARDIAC WING and i felt keeping the appointments would be redundant). Then she asked me if my pediatrician knew that LC had a heart defect. (If she didn't know, her referring us here and setting up the appointment was one heckuva shot in the dark, wasn't it?) Please note: all parenthetical sarcasm was thought...not uttered aloud...but in retrospect, should have been.
All of these social blunders I would be willing to forgive her for. After all, I am quick to claim the title of social moron based on an impressive collection of available evidence. It would be a "Hello, Pot....This is Kettle." situation, as my husband would say. I could hardly fault her in areas where I also struggle to keep up with most humans...and well-behaved house pets.
There are times, however, when being socially graceless, and tactless, and prying, and frankly...rude, do achieve a level that even I can comment on. And it happened in our next lines of conversation, recorded for you below:
Dr. Stump asked me if I had come to terms with everything. I wasn't exactly sure what she meant so she continued after my silence and said, "The Down syndrome. Or did you know before she was born."
I explained that we had known and then, begrudgingly, explained that LC was being adopted.
She was surprised and said, "Oh! What a shock! Had you committed to the adoption before you found out about the Down syndrome diagnosis?"
Keep in mind, folks, that most Down syndrome babies are born with perfectly healthy and functioning hearts. And this woman, who had full knowledge that LC was going to need open heart surgery, was giving no attention to the defects she was trained to discuss and, instead, focusing on the horror of LC's Down syndrome.
I explained that, in fact, we would not have pursued LC's adoption had she not had a diagnosis of Down syndrome. To which she poetically replied,

"Why would you do THAT?!"

Fear not, blog visitors. This is not a call for sympathy. If stupid people didn't exist, I'd be out of a job. And, to be quite honest, this is most probably a case of near-sightedness. I can't think of another possible explanation for meaningfully asking that question while standing in front of one of the most gorgeous things God ever created.
Nor is this an opportunity to comment on how, despite her obvious medical skill and experience, I dismissed the authority of any other thing she said within the duration of our 20 minute appointment.
It's actually a chance to publicly reproach myself for not having an immediate and specific answer ready and available. I have thousands I could have chosen from and didn't attempt a mention of any. But, since the odds are excellent it will not be the last time the question (or some less tactless form of it) is posed, this is my chance to publicly vow that all other opportunities to fully celebrate the exquisite wonders of LC Grace will not be missed as today's so unfortunately was.
And, without further delay, the 1st installment of

Eating Up Life with LC...

Today's best moments...
The FIVE times I watch LC roll directly from her tummy to her back to get out of enduring blasted tummy time. LC is a mini-voyeur. She gulps in the room around her through her pretty little eyes and is constantly looking back and forth when she's in her bassinet or laying on her back on the floor. The objective of her tummy time is to strengthen her neck muscles...and, in theory, it ought to work. Because she wants nothing more than to be able to see the world around her again. But the kid's not stupid. And she knows the 30 seconds of strain are going to buy her 3 seconds of glimpse time as her head inches up and then crashes back down again. And so, while her neck remains slightly less floppy than an egg noodle, her upper body strength has improved dramatically. And within 10 seconds of putting that kid on her belly you'll hear a grunt, a holler and then...shove...onto her back she goes to bask in the victorious view.

November 24, 2008

Boys, Boys, Heigele Boys!

Oh, how selfish of us not to phone Alayna to come and join us in basking in blonde haired, blue eyed glory this afternoon. LC's cousins came to visit and she finally got to meet the wild trio she had heard so much about. She didn't know who to stare at first and it's obvious that Hayden, Holden and Harrison have a super fan named LC. She also couldn't take her eyes off of pretty Aunt Sandy...note the ABSENCE of cuddling shots featuring Uncle Alan...he must have heard the Russian Roulette policy at our house when it comes to diaper duty...

Here's LC, loving her boys...

And showing off her tongue for Aunt Sandy...

She just couldn't keep her eyes off that pretty lady...I don't know that she's seen a woman who paid cosmetic attention to herself before. She was enthralled.

Poor Hayden...

Under close inspection. Holden kept using "it" when he'd ask about LC...it'll take some time to get used to that new pronoun at Heigele events..."She's" are few and far between...

Smiles for cute blondies...

Holding hands with Harrison...

Hayden is LC's heart buddy.
He showed her his scars from his heart surgery when he was a tiny thing.
Now he's so big and strong...
LC will be looking up to him for a long time...

Why I Cook Once a Season

I decided to spend a few days at home with the Bug, since I was getting jealous of all the time she was getting Grandma Janet all to herself and I wanted to observe whatever laundry system Grandma Janet uses that has allowed me to see the floor of our laundry room for the first time in more than two years.

Yesterday the weather was C-O-L-D so I thought I'd take advantage of being home to make some soup. I decided to read a few Chicken Tortilla Soup recipes and then mix what I like from all of them to make it. Janet asked for the recipe and, since it was just a series of steps taken to try to ward off culinary disaster, this is the only way i know how to share it.

Ideally, you'd start with a rotisserie chicken from the grocery. but apparently those are a late afternoon find only. so I defrosted some chicken breasts.

Get a big skillet with a lid on it and put some thawed chicken breasts in it. Then cover is up with enough wet so it can simmer long enough to be pulled apart. I used:
2 cans of V8 left over from a faulty purchasing decision at CostCo leaving us with healthy beverages that have lasted longer than our healthy eating streak did
Some leftover chicken broth from the fridge
Leftover salsa--i think any kind you like would do. We had about 1/3 of a tall jar left. We use Margarita's...
Oh, and a packet of taco seasoning.

Put that in the skillet on medium/medium high for the time it takes you to write and email a day's worth of minute by minute management directions for a classroom of 7 year old students. I think it was about 30 minutes or so. The time it takes me is a lot less now that I give my substitute permission to imply that corporal punishment regulations only apply to district full-time employees.

Get some tongs and shred the chicken up. When that doesn't work (and it won't) then get two of your husband's barbecue forks and use those instead. Leave the shredded chicken to bubble around in the wet. you can add more wet if you need to. Tomato juice or broth or salsa or whatever wet you prefer.

Get your bigger crockpot. Dump a big can of tomato sauce in there. Unless your husband will allow chunks of vegetables to pass his lips. Because then i'd recommend diced seasoned tomatoes or something. but i'm no longer well versed on those canned good products because i've been pureeing all vegetables and relying on onion powder for nearly 3 years now...it's like preparing vegetables for an astronaut.

Dump in some more chicken broth until it looks like soup. Also put a can of enchilada sauce in there, if you have it. I just had one i needed to sacrifice. Oh, and more salsa. Because that's an easy way to season the stuff.

Your chicken's been bubbling for awhile now (if you didn't hit the rotisserie lottery) so put that in and find some corn tortillas. It has to be corn, though. And not chips. The tortillas that you wrap enchiladas in...if you ever make your own...which i don't...hence the available enchilada sauce...Get five or so and cut them into skinny strips and stir them into the soup, too.

Then put the crockpot on low and leave it for a couple hours.

When you check on your soup again you'll realize your tortilla strips have completely disappeared, but it's okay because it thickened your soup and it's gonna taste good. So slice up some more and put those in...but they're going to disappear too.

About an hour before supper, you'll look into the crockpot and realize it looks a whole lot like the mexican chicken you make for tacos and if your husband comes home and drains it like he usually does when you're not looking it will test the marriage. Luckily, beans and corn are allowed at our house. So stir in two cans of black beans (are you supposed to drain them? If you are, then you should. Although I didn't. And maybe you can email me in order to save us all from future gastrointestinal suffrage...) and put some cans of mexicorn in there, too. Or just frozen corn. Which I didn't have. Although I did have four bags of frozen peas.

Let everything heat through and when you serve it stir some sour cream in there. I used light and it worked fine and was very yummy and good. You can throw cheese and Fritos on top, too.

So there's a crock pot recipe for you if you need one. It makes a lot. And it's good the next day. And it's an example of why I don't share recipes.

Photo and video editing at www.OneTrueMedia.com

SPIZE!

Hi evrbdy! Iss LC! my mom is sik so i im sndeeng dis bekuz she is etzosted.

dis is hr stuf.

tody is my dramma jannit's birfdy! i heppd mom dekrate bekuz i luf birfdy spizes.

my mom wus spized too bekuz i wus waek fum wun to fore firty but dat is bekuz i wunted to hepp.

we maded a t prty bekuz mom sed dramma dinnit git to haf dem ever sins dad wus littel. we put a cup fo daddy too bekus mom sed he pwobley misses dem.

we hangd sines an my mom put me in a brfdy owtft. fanks for dem shooz drampa steef.

i vited wots of fwends to de t prty. sum dem is sik wike mom so dey haf to haf maks on.

i wunted to haf a birfdy hat on but mom sed we shood ware a birfdy boe for obveeyuss weezuns.
i gess yoo downt selbwate obveeyus weezuns wif hats.

dekrateen is hrd wrk. i wus so seepy aftr it.

dramma jannit wil be so spized! hapy birfdy dramma jannit!

Post Game Update...

Looks like another long and humbling holiday season ahead...

Rah, rah, rah...

Well, until I have enough energy to post about my first week "back to the grindstone" we'll send our 'Cats some last minute good luck for tomorrow's big game against the Cornhuskers. Everybody on my side shows up at Christmas wearing Nebraska Big Red, so we have more than a few reasons to resent this year's football record.

Nevertheless, Dad's off to the big game with a batch of lucky Puppy Chow (well-littered with purple M&M's) and LC's ready to cheer them on from home. We may go down, but we'll look cute doin' it.

Glitter Graphics Maker & MySpace Layouts

Happy One Month Birthday, LC Boom Boom!

Today for a birthday treat, LC got to spend the day away from her neurotic mother. Not surprisingly, she was awake from 11:30 until I walked in the front door after 4:00.

LC spent her birthday back at Shawnee Mission Medical Center since she hasn't been keeping her tube feedings down. She's been put on Pedialyte and had that in place of formula for a few feedings. Now she's doing a pedialyte/formula cocktail. She's also taking 10 - 15 minute breaks following every ounce. I'm playing around with the idea of just leaving her permanently hooked up to that pump...since the amount of time she's having between feeds is about long enough to rinse the bag and start again. Come to think of it...my own amount of time between feeds is very similar...she probably has the only nursery stocked with an M&M drawer...tomorrow I'll clear enough room on her changing table for a coffee maker...

We had our first visit from Home health care this evening and LC has gained 15 grams since her hospital discharge on the 3rd. That's just below the goal for gaining, but since she's been shooting like a firehose the past few days I was surprised she'd gained that much. Her nurse was positive about LC's muscle tone and her high degree of squirmage. I don't remember much about the visit, actually. I was nearly collapsed from exhaustion so pretty much sat there with an open mouth, drooling and grunting to appear engaged and medically responsible.

I attempted to pick up something for supper on my way home from work, but was in a bit of a stupor. I came home with 2 liters of diet pepsi, a pound of lunchmeat and a box of assorted chocolates. I had every intention of making supper and then, mother of the year candidate that i am, fell asleep and slept through it. Grandma Janet was able to scrounge up a cold sandwich for her supper. Which beats the microwave popcorn I offered her last night. I hope she can find a way to make one out of deli chicken and chocolate buttercreams tomorrow. We're out of bread. Actually, I am staying up all night to make sure she doesn't try to sneak away and escape under the cover of darkness. I thought I heard luggage clicking in the basement. I need to go hide the car keys.

Here's LC in her big girl bed!

We have to angle it for her heart and GERD...quite a plush set up, really. Too bad for LC I was left to my own creative devices to create the set up. Nothing like snuggling down on a big, plastic tupperware lid. She's a sport about the whole thing, though, and really likes her new mobile.

LC's buddy Alayna turned one month yesterday...I never imagined our prayers for a sweet Downsie baby would be answered with two of the cutest munchkins you ever saw...keep Alayna in your prayers...they're WORKING and she's graduated from preemie clothes!

Lots of love to Kellymom and "Big" Cindybuns as they're both recovering from recent doctor visits, themselves. We love you so and if those doctors are prescribing anything especially delightful, send a few my way...

Breakfast at the DSG

Today we attended the New Parents breakfast hosted by the Kansas City area Down Syndrome Guild. The cute factor in that room was out of control.

One of the BEST parts of the morning was getting to see our NICU buddy, Alayna, outside of her plastic box. Wowie, wow, wow...talk about a NICU all-star...she is pink and pretty and let her mom know at the end of the morning that the time for LUNCH HAD ARRIVED. We had to take advantage of another photo opportunity, of course, as it was our first Downsie social event and we RARELY come into the company of anyone who can return LC to her legendary "Sumo of the NICU" status...

Silly faces...

Synchronized sleeping...

Security...note the handsome gentleman in the back there. That's Alayna's chief of security, Aidan. He keeps the paparazzi at bay and makes a mean Halloween cookie.

It was great to talk to other moms and dads about their experiences with their newbies and also see some older downsies who were on the other side of some of the hurdles we'll be facing this year.

After our busy morning we headed out on mission "Stop the Snot". For the first time since coming home, barfing has become an issue and we think the culprit may be drainage since LC has been sounded congested and sneezing quite a bit. Her eyes are watery, too, so we're wondering if a seasonal allergy might be the cause. We're not above considering demon possession, however, since the episodes can be pretty dramatic and turn our usual happy clam into quite a squawker.

There were quite a few devices to choose from at the Babies R Us and, since Dad was along for the venture, focused in on the battery operated models. His influence was also heavily apparent in the model we finally purchased. It's uniquely bizarre with various suck settings and a button that plays 12 different songs intended to distract your infant as you suck their brains out through their nasal cavity. I'm not sure it actually improved the situation dramatically, but it was a lot quicker than the blasted bulb syringe.

LC is NOT a fan of the process, regardless of the appliances involved, and will probably suffer post traumatic responses now whenever she hears a scratchy recording of "Twinkle, Twinkle". We also nabbed some saline drops and a Vicks vaporizer, so it looks like we have a wild Saturday night in store...

Final Hours of Photography Abuse

It's official...I'm heading back to work on Monday, so LC's 24 hour photo shoots are about to be a thing of the past. Expect more photos when I find the camera again to document the first day of kindergarten...

Baby Book Entry: LC's 1st Public Spectacle

Well, I'm ashamed of the day's events, but I figured if I was chronicling the arrival of LC accurately I should probably include all my social foibles and shortcomings along the way...

Today LC and I prettied up and went to the Social Security office. Apparently, a ball was dropped somewhere and Squiggy doesn't have a social security number. The place was a predictable nightmare of lines and waiting and automated number machines. We found ourselves in quite an eclectic social gathering there in the waiting room but even the man engaging the water fountain in a debate over the price of crude oil was only interesting for so long.

Finally our number was called. We were there to apply for a number and also go through an interview to document each of LC's medical issues in the hopes of qualifying for SSI benefits, etc. I had envisioned this happening in a sit-down scenario, I guess, and was a little startled by the prospect of conducting the whole thing with a woman inside a glorified toll booth who was only visible from the mid chin up. Things got ugly fast, I'm afraid, as LC's munch time hit when our lucky number was drawn and I hadn't quite figured out how to travel with the pump yet so I was flustered and stumbling through the hook up and pump programming...I explained what I was there for, and the woman pleasantly replied that until LC had a social security number there was nothing she could do to help me. What the....?

When I restated that we were actually there to apply for the number she asked for the records verifying the finalization of our adoption. I explained we couldn't file for adoption before gathering her SSN and SSI information...that's about the last thing I remember. She was very adamant about not being able to proceed until LC was legally adopted and I was at a social low point when it came to patience and tact. I interrupted her, (much to the delight of the drooling onlookers behind me) and shouted. "HEY. I am not here to give you an education on the adoption process. I'm standing here feeding my kid with a freaking backpack. I want to know how to get a social security number."

That's when we were joined by Harv the uniformed police officer. He and I had met before when he interviewed us at the door and asked if we were carrying firearms or pepper spray. He must have seen this one coming. And frankly, it was a good thing he was there, because I have never known the rage I felt when that woman looked at me and said, "She is not your baby. When she is, come back and you can apply for the number."

Had I not been a second grade schoolteacher, that woman would not have survived to see the end of her shift. But my powers of fear inducement are well practiced thanks to my little grubs. And I didn't even hesitate. I lowered my chipmunk voice to a near whisper. I stopped blinking completely. And...I...spoke...very...slowly...and...deliberately...with...exaggerated...enunciation...

"You stand up....and you find someone with more experience...and you make sure they have training in diffusing a potentially volatile situation..."

I swear to God, even Harv took a step backwards.

We ended up learning that LC's adoption agency should have applied for the number, so hopefully they'll handle all of that soon...too bad LC slept through her first social embarrassment in the company of her mother. Oh well...I'm sure there will be countless opportunities for that in the future...

The music you hear is Andrew Peterson from his

Slugs, Bugs and Lullabies album.

Go here to grab a copy or two.

You won't be disappointed.

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Paperwork Day

Sorry no time for a longer post. Lots to do today with medical and adoption paperwork...

Some of you asked for a point of reference to compare LC's size to, since it's hard to get a feel for her size (or lack there of...)

Here's LC sporting her first pair of "tights". Size: 0 - 3 months.

We're short, folks. S-H-O-R-T. SHORT.

Accessorizing...

Our nurses suggested putting LC in hats so we can tuck her ng tube up inside and prevent her from pulling it out...

Initially we were both horrified to consider the loss of her signature hair bows...so we started experimenting with some other possible options...

Here are a potential few we created this morning...

SUPERDAD

We're finally home! We had a busy afternoon gathering up our things and learning about LC's new munch method. We had visits from her cardiac nurse team, her cardiologists, her occupational therapist, and a representative from the company that we're renting LC's medical supplies from.

Justin went in to work for the morning, then met us at the hospital at 1:30 for LC's ng tube insertion lesson. A nurse came in and asked which of us would actually do the insertion. Justin and I had discussed it before and thought that I'd better do the actual insertion since I'd be home for the coming week and most likely to be the one to deal with putting the tube back in if LC pulled it out. The nurse handed me the tube that I'd be putting in and that's pretty much as far as I got. I held it just long enough to look at the full length of it and then promptly pass it on to Justin. Lucky for LC and I, he dove into action and didn't even break a sweat as he measured the length he needed and then sent all 22 inches right up LC's little nose. Wowie, wow, wow.... (and pukie, puke, PUKE...)
So I wouldn't feel like a complete and total failure, Justin pretended he couldn't tell if he'd placed the tube correctly, so I got to do that part (listen to her belly with a stethoscope and push a syringe with air in it to hear whether or not air enters her tummy)...but he was quite the impressive hero of the afternoon, let me tell you...

Here we are setting up at home...

This is our newest piece of nursery furniture. It holds LC's bag of formula and the pump that monitors how quickly her snacks are delivered.



This is the pump that is programmed to deliver whatever snacks she doesn't take via bottle. She has a set amount she has to munch every 3 hours. If she pitters out before she meets quota, we put the remaining amount in the bag and send it through the monitor. We tell the pump how much to give and how long to take to give it.

Right now, she also does two early morning feeds completely via the pump, in an attempt to conserve her strength and energy for staying awake and munching during the day.

This is LC's clever picnic basket. It's a backpack specifically designed to hold everything usually on her pole. We'll take the bag with us when we go somewhere during a mealtime and we can hang the bag on a stroller or wear it and it will deliver LC's lunch without any of the monitors or tubes showing. It's has specific straps inside and also strategically placed holes that will allow the tubing to leave the bag in order to connect to the tube in her nose.


Her medications are also delivered completely via ng tube, which will be good for ensuring that she actually receives the exact dosage she needs without spitting any up or not eating medicine that is mixed into a bottle, etc.

We'll keep you posted on our brand new adventure, of course...thanks for stopping by our blog and sending such encouraging and positive thoughts our way!

YAHOO!

Today is Going Home From the Hospital Day!  

Dr. Drake came by on rounds this morning and said LC was doing great and he had never had the opportunity to work with one of the celebrities from Flashdance.  (We changed to hot pink leg warmers for his visit...they were a big hit.  Bug also turned on the charisma and charmed her way right into discharge...)

Dr. Drake said to expect some days to be munchfests and others to be ones that rely pretty heavily on her ng tube.  As long as she's gaining and keeping her food in her belly we'll take whatever method puts it there.

This is LC with her mascot from Nana Cam.  We've decided to bombard her with appetite role models.  This is the cutest we have (since the others are Dad and Mom with bags of M&M's tilted at their mouths...)

Overnight Shots While We Wait for Morning Rounds

We have a "hot potato" policy when it comes to LC's diaper changes, although with the new Colase prescription it may be more fitting to call it Russian Roulette...we're waiting to see how that actually impacts diaper action.

Basically, if you're holding the gun you're responsible for whatever happens when it goes off, and so far LC has impeccable timing (at least as far as I'm concerned...)

There was also some apparent unauthorized camera use last night after LC and I settled down for a rest.  Justin the camera sniper felt necessary to prove that moms are capable of hospital napping as well...

Here are LC's newest leg warmers...I am especially fond of these since she looks like the love child of a kewpie and a muppet.  Justin calls them her Purple People Eater pants.