Tuesday, March 31, 2009

It's a GO!


Dr. Kaine moved LC's surgery from 1:30 p.m. tomorrow afternoon to 6:00 a.m. tomorrow morning in order for her to be under the care of a cardiac anesthesiologist...


What a WORKOUT!

No pictures to post of the kid, because she is down for the count. That physical therapy wears a girl out!

Miss Erin worked with LC to establish what her baseline was so we could focus on areas for improvement. LC was delighted to be the center of attention. One of the first items on the agenda was to figure out what most motivated LC...it wasn't me...or toys...or sounds...it was her own reflection. Good to know self esteem will not be a point of concern...(Just like her father...)

Miss Erin was super helpful and gave us some tips for helping LC at home. She liked LC's trunk support and head control and gave us some ways to help strengthen her arm muscles. (Good luck. I'm obviously not an authority in that department. Sometimes I have to take a break while I'm shampooing my hair, for crying out loud.) Erin said she was developmentally appropriate for a baby nearing the end of her 5th month, so that was good to hear. It was actually good to hear anything at all, since the session was also an attempt by LC to break an IDC record by blowing a 30 minute razzberry. It really is her #1 favorite hobby.

LC had a blast and was sad to be loaded up for the trip home. She fell asleep right away, though. No WONDER that Alayna is in such good shape. Miss Erin said she was going to have other therapists jealous of her cute clientele with LC and Alayna on her list. LC was too preoccupied smiling at herself in the mirror to respond...
Because my daughter can be described
by many words that begin with 'r',
but none of them fully encompasses the wonder she is or
the potential she holds for wonders to come...



Please click on the photo above to visit one of my favorite blogs and read reflections from a mom far more eloquent than I am related to the topic...

Don't Panic...Don't Panic

This morning during her first feeding LC did her daily gack up of goodies that had collected in her belly during the night. I stopped her pump and removed her jammies to wipe her up when I noticed something unusual about her incision...

Upon closer inspection I realized I was looking at a suture hanging out of her chest.



I took a very deep breath...I told myself not to panic. "Self, just get the tweezers," I said. "Just get the tweezers and pull it out. Just get the tweezers and pull it out and barf AWAY from the baby."
So I DID. I got the tweezers. I soaked them in alcohol. I got a plastic bucket from the hospital. I set it to the left of the baby.
I bent over her chest.
I grabbed the suture with my tweezers.
I tugged.
The suture did not come out.
The KNOT of the suture pulled up and out THROUGH A HOLE IN LC'S CHEST and when I hollered and let go the whole thing dropped back in. Still attached to the kid.
I think I need to take her to the emergency room, even though Dr. Kaine said to expect this. But I know if I do then Justin will hear about it and I'll get the same lecture I got when I called animal control about the rats in our neighborhood.
So I call her doctor's office instead. And they ask me if it's oozing anything.
WHAT??? Is that another fresh horror I should anticipate? Is a living, talking being going to crawl out of there at any point???
When I confirmed it was just a dry hole with a stitch hanging out, they said to wait a couple days and it should just be absorbed by LC's body. But to be sure and call if anything green starts to come out of it.
Oh...there will be no NEED to call, madame. You will hear my screaming.
So, I think they're underappreciating the seriousness of this situation. Because where is that stitch attached to exactly, hmmmm? How do I know one more little tug of the stitch wouldn't leave me holding her tiny beating heart on the end of a string?
I check the site again, to be sure. Yes. I am sure I can see her beating heart through the gaping pinhole on her chest. It could be the nauseating panic talking, but I'm sure it's her beating heart.
I think I saw something similar to this on an episode of ER once. I think I need to cover the wound...I realize upon arriving at our medical supply kit that we are well prepared for any injury up to a papercut. After that, we have NO supplies suitable for an emergency. I mentally start a list for Walgreen's...
Attempt Number One:

This is pretty good. Almost looks professional, really. But band aids are no match for LC since I used them to affix her nasal cannula to her face. She can take care of a band aid in 20 seconds at the most...And, note the look of panic on LC's face. I must try to keep my composure before she's overcome with the fright and pain of it all...
Luckily, LC's dad plays baseball in the summer, during which he suffers a variety of sports related injuries...
Attempt Number Two:

Perfect. This will do for now. The post it was a stroke of genius I had at the last minute, since LC's dad rarely checks the blog during the day and a verbal retelling of the story may not be possible before he arrives home and attempts anything crazy like removal of the medical dressing.

You'll notice LC's toobie magically removed itself during this first aid intervention. No matter. I was too preoccupied saving her life to monitor little toobie grabbing fingers.
I'm not sure the next step to take...perhaps I'll just leave it all in place until her surgery. There's enough neosporin on there to take her into May, really. Sounds like a plan to me...

Monday, March 30, 2009

Surgery Postponement (?)

There seems to be a difference of opinion between our cardiologist and the anesthesiologist we spoke with this morning. Dr. Kaine, our cardiologist, is quite adamant that LC not undergo surgery unless she's being monitored by a cardiac anesthesiologist. So...tomorrow at 1:00 Dr. Kaine will learn if LC was matched with one for Wednesday's surgery. If not, then he will cancel her surgery for Wednesday and postpone for a 6:00 a.m. Friday slot, since there's an increased availability of cardiac anesthesiologists as cardiac surgeries aren't performed on Fridays. No word yet on whether THIS Friday is an open possibility, though...

Looks like we're officially playing this one by ear...

FREE DOG

This item must go...available to the first taker. Quick, before LC gets attached.

Roobie is heartbroken over her lowered status with Justin, her sweet Baboo. She's been expressing her sorrow through random acts of naughtiness...(But don't be confused...LC belongs to ROOBIE. She'd lick every inch of the kid if we let her.)

She has never offered to chew ANYTHING and since LC's arrival Roobie has become obsessed with attacking and destroying any baby sock or mitten that falls within her reach. Just before LC's heart surgery Roobie ate a baby mitten right in front of me when I bent down to take it from her. Two weeks later we found the mitten in the hallway. I need not describe it's condition or the puddle of goo it was lying in.

Here was her latest act of tyranny. Since LC and I left before Justin this morning, I'm sure Roobie was anticipating a morning alone with her sweetums. This is how she responded to the news that he'd be leaving as well...



Good bye Mr. Clean Magic Erasers.
Good bye Roobie.

(All interested parties must contact me immediately and be available to pick up before Justin gets home from work. All interested parties must also be willing to sign a certified document prohibiting you from confessing to Justin the whereabouts of said dog or how you came into its possession.)

Now, THAT is answered prayer!

We just got back from our pre-op appointment. I just took LC in her robe and slippers (thanks again, Gretchen!) because she has to stay in her diaper while she's there anyway. You'll notice her security bikini in the photo as well. She's been preferring it to blooie lately. I think she resents him for his unexpected abandonment of her.

We won't know when the surgery time is for Wednesday because the surgeons can reschedule up until 10a.m. the morning before. They're going to call tomorrow afternoon with the "go" time for us to be at the hospital and ready to go.

The best part of today's visit...THEY DIDN'T DRAW ANY BLOOD! I couldn't believe it when they told me! I got a little teary. It may have been because I'd just given LC a full dose of Tylenol for nothing, but I think it was more relief at not having to put her through that business.

The director of anesthesiology saw LC and said he didn't think a cardiac anesthesiologist would be necessary. He also asked when her open heart surgery was scheduled to be performed...which didn't inspire a huge amount of confidence on my part, director or not. I explained that the stripe down her chest was NOT a bizarre birthmark and that she had already had the surgery done. He held firm with his opinion that she didn't need a cardiac anesthesiologist, so I came home and called our cardiologist, Dr. Kaine. We'll see what I hear back from him...

Negative energy warning...the next few paragraphs are just me complaining, so feel free to stop now if you're not interested...

I usually don't like to vent here when I can help it, but once again I'm leaving a Children's Hospital insulted by the questioning I underwent to provide LC's medical information. I always have my guard up when we go out in public to defend LC regarding her Down syndrome or the toobies hanging out of her nose (and belly) but I rarely am called on to correct someone and have never felt insulted by anyone who meets her. I am repeatedly offended, however, by the treatment we receive (especially medically) due to the fact that she's adopted.

This morning the surgical nurse asked if this was "Lanny". (Seriously? Why am I getting that all the time? L-A-I-N...like TRAIN...and RAIN...and PAIN in my neck that everyone thinks I would voluntarily name my kid Lanny...) But I digress...

I confirmed that the patient was Lainee. Then she asked if I was LC's mom. I said I was. Then she said, "Oh. But I saw on her chart she's adopted. So you're her adopted mom."

WHAT?

I'm not ashamed of the fact that LC has two moms and happily admit that she does, but I don't understand WHY that needed to be established? What difference does it make? Her treatment wouldn't be any different...And if you saw it on the freaking chart, then why did you even ASK me?

"Are you LC's nurse? Oh, but I see you completely lack social skills. So you are her tactless nurse."

Good grief.

I'll go snuggle with my Tylenol-ed squirt and her 'kini...that'll cheer me right up. We're sending virtual snuggles to all of you as well...thanks for the prayers for our morning. WOW! You people do good work.

Sunday, March 29, 2009

Here We Go Again...

It feels ridiculous asking for you to pray for LC during the coming week, since she wouldn't be making the amazing progress she has if you hadn't been praying for her constantly. It's an enviable position we're in, living bombarded by the evidence of hundreds of answered prayers. We can't thank you enough for the way you've continued to advocate for her well being and I'm embarrassed to be heading back to the hospital when I still have a stack of unfinished thank you notes sitting on my dining room table from our last go-round. Please know our gratitude is beyond measure...

Tomorrow we prepare for LC's fifth hospitalization. Five in five months isn't too bad, I suppose, but we wouldn't mind spacing those out a bit here in the near future. In the morning LC and I will go to the dreaded pre-op appointment. It will be a long morning of pokes and prods ending with the ever-dramatic blood draw. I'm dreading it like the plague. I have never seen her blood drawn with fewer than 10 attempts to find veins or less than an hour trying. Her reaction to Friday's painless echocardiogram is pretty clear indication of the unpleasant association LC's quickly developing toward anything medically related, so I'm hoping we're happily surprised by a nice, fat juicy vein when the time comes for blood to be drawn.

I don't think we'll meet with Dr. Sharp, our surgeon, tomorrow but we will be able to discuss the procedure with an anesthesiologist. Hopefully the request of a cardiac anesthesiologist won't be much of a problem and we'll get a feel for what time of day the surgery will be scheduled and how long we should expect for her to stay following her Gtube placement.

Thanks for praying LC through tomorrow's yucky events...I'll post with the official surgery information as soon as we learn it...

Our Buddy's a Super Model!!!



Look, everyone! This is our good pal, Loren! And she's famous!!! She was in the KC Star. Ooooooooooo...we're totally getting an autograph...

Saturday, March 28, 2009

Oh, We Love Bikinis...

I say it all the time, but when LC joined us our family grew by far more than one person. We have been perpetually blessed by the friendships and fans we've acquired that we'd never have been graced with had it not been for LC Bean.

One of our FAVORITE groups has been Steve, Deanna and Brianne...friends of our Great Aunt Ranelle. One day, out of the blue, a package arrived for LC from a family we'd never met. They sent LC a super sweet note, a hooded towel and........A BIKINI!!!!

(I probably shouldn't mention this or admit to doing it, but the bikini is SO DARNED CUTE and it has a little skirt cover up that goes with it...so twice a week in the evenings she wears it with her hot pink high heels and watches Dancing with the Stars...but I digress...)

The Herredsbergs didn't even know the miracle gift they were sending...because a few nights ago our dryer went kaput during the Amish plague that settled on our house (For over 24 hours we had no cable, phone, internet, dishwasher, kitchen sink or dryer). My industrious husband has figured out that the issue is related to the light in the dryer and some switch that lets the dryer know the door is shut and the light should click off. But it doesn't. And the dryer thinks it's always open. And doesn't turn on.

Which wouldn't be a huge problem since I think I'm averaging a 3 times/month laundry habit.

Only there were some things of LC's in the wash when we realized the problem.
And one of the things was........

Blooie.

He's been pretty helpful in falling asleep lately...his silky side is especially effective in getting the job done.
Luckily, our LC is quite comfortable with improvisation. This was her solution to the problem and they have been inseparable at snooze time since she stumbled upon her Blooie substitute.

(For those unable to make out what you're seeing...those are LC's arms laced through the top and bottom of her brand new bikini...

Bless you, Herredsbergs, bless you...

Friday, March 27, 2009

Cardiology Update

Today we had our first follow up appointment to see how LC's heart is doing post-surgery. In order to check out the situation, they performed another echocardiogram. I think LC reached her threshold for medical procedures during her last hour-long blood draw and hollered for the duration of the 45 minute ultrasound. As a grand finale she worked herself up enough to splatter vomit all over the ultrasound technician. To which the technician replied, "And...you're done."
Luckily they'd obtained enough pictures for Dr. Kaine to get the information he wanted so she didn't have to go back in again after she was cleaned up.
Dr. Kaine said he liked what he saw in regard to the ASD and VSD that hadn't closed completely following surgery. He still thinks they'll close as LC grows and, even if they don't, will not become acute enough to require additional surgery. He's not as definite about the coarctation of her aorta. Her femoral pulse is good and strong and doesn't indicate the coarctation but it keeps showing up on her echocardiograms. As of now, we'll keep monitoring the situation and possibly undergo a catheterization procedure to correct it in the future.

But enough about the major heart repair details...he also looked at the incision bump. It was a mixture of good and bad...the good news is we will not see a wire poking out of her chest at any point because the irritation is being caused by a suture made above the wire but below the skin. The bad news is the incision will possibly reopen as the suture works itself out. It's currently absessed but its occuring deep enough in the skin that LC isn't experiencing any pain from it. It will only affect her directly when I wake her one morning to find her chest has split open and I pass out in a puddle of my own vomit under her pack and play.

Another issue that came up was LC's weight since surgery. Although her heart isn't working as hard as it was before and her eating schedule has been unchanged, her weight has actually dropped about 7 ounces since the beginning of March. It will be something that will be closely monitored anyway, due to next week's Gtube procedure, but we may need to return to round the clock feedings (boo hoo!) and specially concentrated formula, depending on what her weight does in the next week or so. Prayers for plumping up would certainly be appreciated. (But make sure you're specific about the target, folks. I've got a drawer full of Easter candy here that I'll be visiting regularly WITHOUT a spiritual intercession...)

Despite the 45 minute scream session at the cardiologist, Miss L did not feel that napping was necessary today and didn't collapse until after 9:00. Unfortunately, I'll need to wake her in a bit with the happy jolt of a tube being thrust up her nose, so that will improve her disposition, I'm sure.

An endearing, "Go find something else to do
with yourself and your camera" razzberry
from LC and her sweetums...


Apparently the sprout that used to be on the BACK of LC's head has migrated to the front...


Team Justin. I'm so outnumbered.

Thursday, March 26, 2009

Our Latest Accessory...

We're also expecting snow this weekend, which will give us a good opportunity to catch some shots of the SINGLE MOST FABULOUS PAIR OF SHOES WE'VE EVER RECEIVED. (Shhhh...Hayden, Holden and Harrison...don't give it away yet....)

Unfortunately, since we're trying to stay germie free for Wednesday's surgery, we won't get to sport them at the Down Syndrome Guild conference we'd hoped to attend on Saturday...we're starting to get suspicious of LC's hospitalizations whenever we have one of those events planned. We're definitely going to stop sharing our calendar of events with her...



Wednesday, March 25, 2009

Well, BARF.

Yesterday LC was a trooper at her doctor's appointment. She took her five shots like a champ and only cried for a little bit until she was dressed and promised a bubble bath at home.

At her appointment, our nurse practitioner gave some special attention to LC's incision. She's always had a mosquito-bite-looking bump at the most raised point of her sternum since the day they removed the surgical tape. No one has commented on it before or called it into question...

When Gayle noticed it she said it looked like they had missed a stitch when LC was having her incision stitches removed...Only, too bad for us, because she didn't have the incision stitched shut.
Upon closer inspection she concluded that it was actually whatever was used to bring her sternum back together poking up through her chest.
I cannot express to you the level of gag reflex I'm withholding right now or it would defeat the whole purpose of holding it. You know how you feel your mouth start to fill with spit and you get kind of hot and you keep telling yourself "Do NOT think of that gaggy thing!" but then it's all you can think about and also, for some unknown reason, you start thinking about undercooked overeasy eggs and also the taste of cheese crackers because you ate too many of those and threw up when you were seven years old and you want to run screaming from the room for a distraction but then you look down and the barf trigger is ON YOUR BABY'S CHEST AND YOU ARE GOING TO HAVE TO TOUCH IT AT EVERY BATH TIME.
This is not good. I do not have the strongest stomach in the world and, as I'm aging, I swear it's getting worse. Did I tell you I can't stomach the smell of Pampers anymore? CLEAN Pampers. Not dirty ones. I smelled a batch of clean ones when I got the stomach bug at the hospital with LC and I can't even walk down the diaper aisle at Wal Mart without holding my breath.
This is not good.
So we go to her cardiologist on Friday and we'll investigate what will be done to correct the alien wire that is fighting its way out of LC's chest...oh yuckyuckyuckyuckyuckyuckyuck.
On the plus side she's completely oblivious to it all and doesn't complain a bit. Not at all like her crazy mother...

Tuesday, March 24, 2009

Click on the photo below for a printable prayer card for Leo...Feel free to share Leo's surgery prayer requests with anyone who may not be a regular visitor to LC's blog as well...

The Latest in a LONG LINE of Betrayals...

First, it was Alayna....then Sawyer...and now Loren has joined the group of traitors who started out smaller than us and have quickly grown like chunky weeds, leaving us in their dust.

This is Loren's first visit...only a few short months ago...
Yesterday, we convinced Loren to come over again to help distract us from our first day without Sweet Curtie.

WHAT HAPPENED????
We quickly forgave Loren for her growth spurt, since she was lots of fun to have around and kept us from getting too lonely for Curtie Jo Jo...
LC pointed out some of the intricacies of her crib mobile...
Obviously, we have some personal space issues that need to be addressed...
Loren has a super sprout that we have always been very envious of...
Loren's also a talented conversationalist and even inspired LC to take a break from her razzberry-blowing obsession to try a few gurgles in response.
We would have posted sooner, but we're experiencing some problems with our cable service lately. When you sign up for those package deals you never really consider that getting your phones, TV and internet through one magical wire can lead to some interesting consequences if that wire malfunctions. We've been visited by quite a few friendly cable company employees in the past day or so, but still no luck. It's probably why Curtie and Whitney were so eager to board the plane back to California. When I asked Justin how we should spend our Sunday afternoon he growled something about putting on our zipperless clothes and hitching up the ox to the plow, so hopefully we'll be technologically restored before his withdrawal symptoms worsen.
Luckily, Justin's been busy traveling with work. Yesterday he spent the day in Las Vegas and today he was on to Memphis. He chose a great time for his trips, and not only due to the Amish lifestyle recently forced upon us. LC will be busying herself by receiving SIX vaccinations this afternoon, so this will be an appointment he'll be glad to have an excuse for avoiding. We're catching up on her vaccinations she missed during her open heart surgery hospitalization and receiving our latest RSV vaccination shots as well. We're sneaking them in before next week's Gtube surgery, so it looks like another couple of weeks of poking and prodding begins today.
Hope your afternoon is a good one and keeping our fingers crossed that we'll be able to update you on the latest happenings for Boom Boom very soon!

Saturday, March 21, 2009

It has to be said...

Some of you who followed the arrival of Curtie via his blog may have remembered a comparison I made between Curtie and Mr. Magoo...

So, I suppose it's also only fair to note the similarities between Boom Boom and 1/2 of the Laurel and Hardy ensemble...

Needless to say I'm off to locate a Stan Laurel costume especially sized for Curtie...

Thursday, March 19, 2009

Roses from Our Sweetheart...

SWEET LEO SENT LC ROSES!!!! Splashed all over the cutest dress you EVER saw...We were out the door with a camera before I even fired off a squealy THANK YOU email to that boy and his sneaky mom. He even sent us a stuffed lion to squeeze when we think of him. Justin is going to have to up his game a bit...he's being outdone by our 8 month old Romeo...and aren't we LUCKY he is???
Hopefully pictures are worth a thousand words...we've been so busy enjoying Curtie's company I haven't had time to update our blog at the end of our busy days! Hopefully some photos will suffice until I'm able to update in a bit...Love from Curtie and the Boom Boom...






Monday, March 16, 2009

Adoption Day...

LC, all fancied up for the big show...

LC arrived with a fan club for her special day...
Snuggles for Grandma Janet outside the courthouse...


GG Grace in the sunshine...

Curtie and Grandpa Charlie...

LC is obviously joining the family under protest...
Curtie's trying to draw Justin's attention to the fact.

LC's Adoption Day cake from GG Grace and Grandpa Charlie!

Flirts for Grandpa Fred as thanks for removing
that crazy bonnet when we got home...
After everyone had gone, LC reflected on the day with her Dad...
Well, it was pretty good...

But I was thinking...for my next one...maybe you share a slice of that cake...and hit it with a little Magic Shell...