Happiness is... the storm's reward

After six straight days of the sky's incessant sobs, flooding, a tornado (yep... a tornado in So Cal!), the clash and flash of thunder and lightening, the clouds have finally parted and offered a brief reprieve from the storms. (It's supposed to storm again Tuesday... ugh.)
Today, the sky was blue and the air, while cold, was clean (yep... clean air in So Cal!) and, but for a few wispy, non-threatening clouds, it was crystal clear.




It was so clear, in fact, that standing at my kitchen window early this morning, I spied the same beautiful view that I saw following a storm last year. Today's view, though, was much more breathtaking simply because of its contrast to the dark, angry skies we've been seeing for days now. The snow-capped (snow buried, actually) mountains off in the distance were beautifully offset by the baby blue sky - - a gorgeous reward left by the storms.

Happiness is... Foto Friday 2, vol. 2

From today...

This afternoon, my sweet little angel made this mess while I was on the phone making two doctor's appointments for her. She wanted a bath, I told her she had to wait, Preston opened the bathroom door for her and she proceeded to pull towels down from the rack and unravel almost an entire roll of toilet paper by pulling it down with her feet and moving it all around her. Even my sweet girl can be naughty! When she saw me pop my head in the bathroom door, she looked up and signed "No" to herself!


Rainy day gear: Fireman hat, jacket and boots.
Rainy day treat: Kid's hot chocolate, ordered all by himself!
I asked, "Is it too hot, Bubba?" He responded, "No mama, it's not hot. Just warm."

From last weekend...

Did you know what hard work Play-doh could be?!


Such concentration!


He's giving me a couple of his many "looks." These two say, "Mama, why are you taking my picture again?" and "I'll stand still, but I will not smile."

Happiness is... a full recovery

Miss Gracie ended up spiking an alarmingly high fever on Wednesday night. She was lethargic and extremely puffy all day, even with extra doses of Lasix (which she's been on her entire life). We'd expected her to be tired on Wednesday... she was up most of the night Tuesday because of the anesthesia, but she never wanted out of her room the whole day. Then the fever spiked and, at first, wouldn't come down with Ibuprofen and Tylenol.

I spoke with her cardiologist Wednesday night and that calmed our nerves. He said to give the fever until morning (unless it got any higher) and give an extra (an extra, extra) dose of Lasix. By late this morning she wasn't nearly as puffy and was much more herself. She even began begging for a bath, which was forbidden for 48 hours post cath. Thankfully, her 48 hour window expired right when the begging started After a forty-five minute soak, she was her sassy, silly self. Hyper... lovey-dovey... happy... stubborn... bossy... and we were thrilled. Yay for full recovery! She will be so excited to go to school Friday - - even if only for one day!

As for me, I'd hardly slept in two days (more deprived than normal!). That combined with Gracie's fever, the horrible weather and Preston being sick, not only had I not left the house, I'd been in the same PJs since Tuesday night. (Ew... gross... did I just admit that?!) When I blurted that realization out loud, John promptly sent me to the shower and then kicked me out of the house to go get the pedicure he'd suggested last week. This time, I did.


A recovered girl at home with her Daddy and brother, a Starbucks (not spilled on me this time!), a book and a pedicure... Mommy recovery!

Happiness is... the power of Ducky

So, I have to confess... when I said that I was alone with Miss Gracie yesterday, that wasn't entirely true. Meet Ducky...

... he was there, too. Ducky was in a basket that my brother gave us while I was in labor with Gracie. He was transported to the NICU with her the night she was born and has since been required to accompany her at every hospital stay. He's been present for every single hospitalization, every single anesthesia, every outpatient procedure, every surgery. His presence isn't so much a comfort to Gracie, as it is to us... and he is always the first thing we pack.

Yesterday, they kept trying to give him back to me, for fear he'd get lost - - which was sweet - - but I let them know that they just needed to pretend that Ducky was a part of Gracie. If they weren't planning on misplacing her, then they wouldn't misplace him. This earned a chuckle and then I explained his significance. I also let them know that Daddy wasn't going to be there, which was a first, so Ducky had an even bigger job.

I think the anesthesiologist, though a very tall man with an even larger presence, was a big softie about Ducky. (He also took an interest in signing and signed "duck" and "ready" to her... which is a first for any doctor, ever). Once he talked to me about Gracie, he made sure I saw that our stuffed friend was sitting at Gracie's feet keeping an eye on the recovery nurse. I think he, too, believes in the power of Ducky.

Happiness is... coming home from the hospital

from the Charles M. Schulz book, Happiness is a Sad Song

Gracie is home from her heart catheterization. She was discharged at 4pm after having arrived at 5:30 this morning. Needless to say... a long day, but one that she tolerated really well (with the exception of the first two hours post anesthesia) and one that yielded mostly pretty darn good news. When we got home, right around 5pm, she was groggy, but that didn't stop her from immediately stripping down to her diaper! That's my girl!

- The cath lasted a bit longer than they'd anticipated. They found a small PDA (patent ductus arteriosus) that wasn't in the "normal" area to find a PDA (no surprise for Gracie), but that we were told had closed years ago and was never mentioned in previous open heart surgeries. It was definitely not closed today (though it was small) and they inserted a coil to close it off. It probably wasn't making too much of a difference, but they figured since they were already in there, they'd close it and minimize excess blood flow given the mitral regurgitation.

- The mitral regurgitation (MR) is, per her cardiologist, "more than moderate, less than severe... moderate plus." However it's defined, it is stable and even though it's not ideal, her heart is coping with the MR well and is not affected by the subaortic membrane that has formed again. (Sub-aortic membranes commonly form following certain heart repairs. Gracie had one removed in her 2006 open heart surgery and has since formed another.) Her left ventricle and atrium are quite enlarged, but pressures are within acceptable ranges. One thing they said with certainty about the valve is that when it's time for surgery, they will not make any further attempts to repair it... it will be replacement time. Since the pressures are good enough for now and she is not showing signs of heart failure, and since she'll have to be on coumadin for the rest of her life once the artificial valve is placed, they have no immediate plans to replace it. The longer we can wait, the better. Her cardiologist was happy with the findings... he had anticipated surgery to be soon. This is all good news.

- Her pacemaker leads are intact and the integrity is still good. There is scar tissue that surrounds them, which is normal, is likely interfering with the amount of "juice" that's being used by the generator. She will need more frequent generator replacements than initially anticipated when her pacemaker generator was first replaced in August 2008. This is disappointing, but as her doctor kindly pointed out today, it's much better to replace the generator more frequently (which is not open heart surgery), than it is to replace leads (which would involve full open heart surgery) and cause more scar tissue.

- The doctor also informed me that the vessels leading to her heart are fully functional, but not at all in the normal position. (This is not a fact that John nor I remember learning previously... but over time, I think it's possible that some things, if not causing an issue, start to fade from memory.) He also said that he can see where things (heart, lungs) are starting to shift and change shape due to her scoliosis... a fact that is not good (though not unexpected) and which he'll share in the report for her orthopedist.

- When she was admitted, I asked if they might draw all the labs her endocrinologist had ordered (a full work-up) while she was under. They all were very willing to comply. Gracie's blood, however, wasn't. Her hemoglobin was low (9.9 - - normal is 13-15) prior to the procedure. They drew half the blood needed for the labs and tested her again toward the end only to find that her levels were still too low. They did not want to end up having to transfuse (neither did I), so we will go to the lab in a month and have the rest drawn. Her potassium was also low, but she'd been fasting and since she gets most of her nutrition at night, that wasn't a surprise. The hemoglobin will need to be checked further, though. Hopefully, we just need to up her iron intake with a supplement.

In all a "good" day... for having anesthesia and spending it in the hospital.
She arrived in good spirits, though was a bit peeved when she realized that we weren't there for therapy. She quickly calmed, though, and undressed herself once I sat her on the bed, played with toys and was a trooper. She smiled a lot. That made me smile. Our nurse, Jason, was a superstar and got her IV in the one try I allotted him. (She had Versed ahead of time and he used a J-tip to numb the site. She did not even flinch when he got her IV in. Beautiful.)

Recovery was a bit rough for the first two hours. Okay... a lot rough. She had to lay flat on her back, perfectly still and with her right leg completely straight. Her right leg is never straight... so I spent two full hours bent over her bed holding her down while she spent two hours agitated from coming off the anesthesia (understandable), irritated due to discomfort - - even with Demoral (understandable) and generally peeved at me for holding her down (totally understandable). It wasn't fun for either of us. So, when they finally let her roll to her side, she relaxed, O2 sats shot to 100% room air, she even cracked a tiny smile and then slept for the better part of two hours. The rest of the time she spent quietly watching "Signing Time" DVDs on her portable player.

We spent a total of six hours in recovery, being discharged following a torturous final thirty minutes of IV, tape and lead removal. I worked with the nurse in an effort to minimize pain and time. She had leads all over her little body and now looks a bit like a red leopard... poor baby. When that was all over, I signed, "Time to go home and see Daddy & Preston!" She practically leapt into my arms!

For the first time ever, John and I weren't together with her during an anesthesia procedure. Preston has a cold (again...) and couldn't go to preschool today. We had incredibly kind offers from friends to watch him, but in the end we decided it was best that John stay with him. He was pretty stressed that Gracie and I were gone when he got up. That coupled with him not feeling well and torrential (scary) storms, we know we made the right decision. We are so grateful, though, for the offers from our friends as well as Nana and Papa (who were crazy, but so sweet, to even consider driving hundreds of miles in that weather!). You guys are the best!

As it turned out, I think I had my pre-op funk last week in order to prepare myself (unknowingly, of course) to cope alone today... and to find the strength to hold down my freakishly strong 25 pound daughter for two hours! (My back, abs, neck and arms are sore! Wah! Poor me! Jillian and Bob would be so ashamed!)

Gracie is currently hyper as can be and showing no signs of sleep. Nor is she showing any signs that she is sore from the procedure or from fighting me... tough cookie! Having not slept much last night, I am too tired to function and too tired to collect my thoughts and be brief! Sorry! Such a long post... all to say she's home and it went well... long, but well.

Thanks, everyone, for the heartfelt emails, calls and texts today. Your love, support and prayers were felt by us all.


*** Added 1/20/10 after initial post ***
Since little details about certain part of Gracie's anatomy (heart and everything else) seem to slip out of memory if they aren't part of the current "issues at hand," I am coming back to this post to add one more item to the list of findings yesterday.

- During the cath, they were unable to pass the pediatric probe through her esophagus to do a TEE (Transesophageal Echocardiogram). Once the anesthesiologist met resistance, he stopped. This has not been a problem in the past (though she's not had a TEE since 2006), so we will need to address with her ENT and find out if there is a new issue. Thankfully, in a conversation this morning with, Ally, one of Gracie's Speech Pathologists, I remembered this detail... as yesterday, I was too busy holding down Miss Gracie's legs to write anything down!

Happiness is... thoughtful friends

Arriving just in the nick of time to save us all from the funky week, was a surprise package from our dear friend Hannah, her hubby Vince and their sweet, joyful Viv. Inside, a thoughtful note and the most adorable book Sugar Cookies: Sweet Little Lessons on Love.

This afternoon, the kids and I read it a few times. Then, they sat together and "read" it. Preston said, "Once upon time people make cookies," which is not (in any form whatsoever) how the book reads! Too funny, though! Gracie's favorite page is (quite fittingly for my love bug) about "Expansive Love" and features a little girl dressed in a leotard and tutu with her arms outstretched. (She loves the little girl!)

It is the sweetest (pun intended) book ever and it makes us so very happy. Thank you H+V+v!!! It is just what the Flock needed to brighten our days! You epitomize thoughtfulness.

******************************************************************

On Friday, Gracie saw her orthopedist for a routine follow-up. He kindly signed the prescription for her new wheelchair (fitted and measured the day before) with no questions asked, so that ball is finally rolling in the right direction.
As I do with most appointments, I had a list of hot points to discuss...

- Scoliosis - - has her curve progressed?
- Pelvic rotation - - is there an underlying problem somewhere other than her scoliosis causing this rotation?
- Right knee and ankle turn in when walking - - does she need any sort of bracing?
- Lack of weight bearing on right - - again... bracing? Is there an underlying issue?

There is good news and not-good news...

- Curve appears stable at this point. Good. (Still spine surgery in her future...) No need to brace her spine during the day. Good. (She previously had a brace, but wouldn't move a muscle while wearing it. Her whole team agreed that mobility was the most important thing so long as her curve didn't rapidly deteriorate. For those who don't know, a brace won't correct a curve, rather it helps slow the progression of the curve.)

- Pelvic rotation stems from the scoliosis... no other underlying cause. Good.

- Right knee and ankle don't consistently turn in with all of her steps so she doesn't need orthotics. Doc watched Gracie walk from the front and back without pants, shoes or socks (holding my fingers for balance support... first time she's walked any distance in a doctor's appointment! It was way too stressful in the past!). All good.

- He says her (teeny tiny) feet (size six... baby shoes!) are "beautiful, flexible and need no special attention!" (Eh hem... other than her beloved pedicures from Mommy!) Good.

- Lack of weight bearing likely stems from the rotation caused by the scoliosis. The curve and subsequent pelvic rotation have caused a leg length discrepancy (which we've known for years) and she always has her right knee bent. Clearly, muscle strength and development have been affected. There's not really anything to do about this other than hope, with time, she begins weight bearing more. Unfortunately, until her spine is straight, she likely will have that right knee bent. And, the longer it's bent, the less likely the muscles and knee joint in that leg will function normally. Ugh... wait and see.

- Because of the scoliosis that's caused the pelvic rotation, he is extremely concerned about her hips. After reviewing the additional hip film he ordered, he was pleased that her hips look "okay" given her rotation. However, there is spacing above the joints and his opinion is that if we don't do some preventative body bracing (yes... body... not just back), her hips will eventually come out of socket (painful) and she'll need surgery (very painful). NOT good.

He said he'd like her to wear the brace at night while she sleeps. Um... while she what? I explained her "sleep" pattern and also explained that she doesn't (won't) wear clothes at home, including pajamas. He said the brace won't hurt her skin if she's just in a diaper... so that's "good." I realize that it's a really bad thing, especially for her hips, that my sweet daughter likes to sleep (when she does it!) on her side curled in a ball. I understand that this is something we have to try, regardless of how much she hates it (and regardless of how much we hate making her try).

If we don't make an honest effort to put her in this brace and something does happen with her hips, we won't be able to live with ourselves. If we try (and try and try) and we aren't able to get her to comply, then at least we know we tried. But I'd be a liar if I said I am not dreading this with every fiber of my being. If she hated her old brace that covered "only" her torso, can you even imagine how she's going to react to one that goes from just under her armpits all the way down her legs... one that will force her to lay on her back? (Never mind my concern for my trached child not being able to be on her side at night to cough easily. I guess my lack of sleep (and hers... duh) is about to hit serious overdrive.) As if you can't tell, my "Pollyanna" personality is out the door on this one... say hello to "Realistic Rhonda" - - she knows this won't be pretty.

So, once we get through the heart cath this week, we will be getting Gracie fitted for a full body brace. Stay tuned.


*Crystal... can you please refresh my memory as to what led up to Eva's hip surgery? Thanks!

Happiness is... "1-2-3 Stomp!"

I love playing with my kids. I love teaching them, too. I especially love when learning can be disguised as fun so that the "instructional" time doesn't seem like it's work for any of us. That's why I love the game "1-2-3 Stomp!"
And, the happy dance that Preston does when he gets to stomp makes me so happy!





Preston and I opened this new game (I got it for the kids for Christmas) and played for about 30 minutes this morning before he was finally ready to move on. In the evening, Gracie played with us, too. She likes smacking the stomper and watching the numbers fly, just like her brother! For her, it was a good "Gracie's turn" and "Preston's turn" opportunity as well as identifying the numbers that we were looking for before we put them back on the game. While it's not a "deaf friendly" game, I can sign the numbers (or colors) that are being called out and help her put them on. There are many levels and game options, so it will grow with both kids... which is good because it appears that aside from wanting to sit on his numbers, Preston's got a pretty good handle on level one!

Happiness is... the return of Foto Friday!

It's baaaack!
Welcome to Foto Friday, Season 2!

Be still my mama-loves-watching-her-babes-with-their-daddy heart!
My girl loves her daddy! She was rubbing his head and patting his back... so sweet.


Taken on Wednesday during the four hour nap! Preston emerged from his room, begged John to hold him and they both went to sleep for two more hours! Again... be still my mama-loves-watching-her-babes-with-their-daddy heart!


Last Saturday - - the day we walked hand-in-hand - - Gracie and Preston painted on the back porch. As usual, Gracie was much more interested in painting herself! Although, I must say, she refrained from completely covering herself with paint the way she often does with pens!


This is what Preston looks like if you ask for his "policeman face!"
Hilarious! He loves this picture of himself because he's wearing daddy's badge!
If you ask him what his job is when he's pretending to be an officer, he says, "Get the naughty people and help people with the firemans and amblances."


On Monday, John took Preston into his office and he got to sit on a real Chippie Motorcycle... he was in heaven!

Happiness is... ABC Thursday

It's 11:57 pm and everyone is finally asleep.

I have DVR'd (is that a word now?) Grey's Anatomy and Private Practice and am now headed to my couch with a bowl of oatmeal (because it sounded good and I won't have to share!), an army blanket (thanks, Papa!) and no one else! :-)

I probably won't last ten minutes once I eat the oatmeal, but that's okay!

(Gracie had a great day today! Yay! Everyone seems to be back to themselves!)

Happiness is... new equipment

I wasn't so grumpy today... that was good.
Nevertheless, things were still a bit off.

- Gracie slept half the day at school and I ended up picking her up a bit early.

- Preston took a four hour nap... so he's still up now (it's well after 10), quietly flipping through a couple of books ("My Truck is Stuck" and "The Three Little Pigs") and watching Kipper on the couch.

- I treated myself to a Starbucks. The guy at the window asked if I'd like any napkins. I declined as I have a stash in the glove box and wipes of all sorts all over the place. He then handed me my drink (iced, thankfully) and as I passed it across my chest to set in the drink holder, the incompletely attached lid popped right off and I had a third of an Iced Venti Carmel Macchiato down my chest and lap. Lovely.
(For the record, this is the second time this has happened to me!)

- Because of her off day and the amount of secretions Gracie was having (she always has a lot, but this afternoon was just nutty), I cancelled her OT and PT appointments.

Then... her PT called (during what would have been therapy) to say that Gracie's walker is in! Woo Hoo!!!
We get to get pick it up tomorrow when we bring her in for clinic and the long-awaited, official appointment to get measured and fitted for her new wheelchair.

Progress... slowly, but surely! Woo Hoo!