Complete Cuteness

Since it's snowing outside...

We are singing along to Jingle Bell Rock (love my Christmas music) and coloring with markers. Yes- its a little early for Christmas music ... I would argue that its also a little early for snow!
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A "new" normal...

It's been 2 full months ... and we may have FINALLY achieved a new type of normal.  Last night, for the first time in two months, everyone slept in their designated spot.  No one was on an air mattress, in a sleeping bag, in the basement, or even the couch.  Seth in his bed, Sara in her toddler bed, Shawna in her crib, and Dan and I in our own bed.  All night! Phew!  I still slept with ear plugs, because I half expected Sara to make a re-appearance. (She sucks her thumb at night, and its impossible tune out that noise at 3 am!) Sara has slept on the air mattress in our room for weeks.  Why?  Well, she shares a room with Shawna. And, let's just say that Shawna has had some adjustment issues.  So, in order to allow at least one girl some uninterrupted sleep, we moved Sara into our room.   This, of course, resulted in some jealousy issues with Seth.  So, on the weekends, he parks himself either IN our bed, or in a sleeping bag next to our bed.  Last weekend, I woke up at 3:30 am and laughed.  Sara was on the air mattress, Seth was sleeping between us, the cat was at my head, and the dog was sleeping by Dan's feet.  It made me wonder why we have so many additional rooms!! :-)   But last night... we all reclaimed our space. Last night, we all slept uninterrupted. Last night was hopefully the start of a "new" kind of normal.  I hope! Lori M. Baylor

Happy Halloween

Batman, Cinderella, and Snow White collected all kinds of goodies Saturday night!

Has it really only been 2 weeks?

It sure seems like a lifetime ago.  But, look at the difference in two weeks...  All the kids were outside playing in the leaves (which you can see in the reflection).  Shawna (and Max) wanted to play too...but it's still a little too soon to be jumping into a leaf pile!! Lori M. Baylor

Home and happy!

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Perspective

Perspective is a funny thing. When you need it the most, it's often hard to find. It lurks around dark corners, waiting to pounce on you when you least expect it. But when you find it... or when it finds you... well, everything just becomes clear.

Our perspective ran into us on Thursday night...literally. I was in route to the cafeteria from the cardio step-down unit. I was rounding to corner to get to the elevators when BAM!! I ran right into some poor women rounding the same corner, going the opposite direction. And there they were... There must of been 30 of them, all crowded into a tiny waiting room outside the PICU. I recognized the Mom from the PICU- (they moved into the room next to us literally 30 minutes before we left the PICU. )There were so many of them... I felt awkward waiting for elevator, like I was invading their personal space. But, they were still there when I returned from dinner. And, they were still there, curled up with blankets and pillows, when I arrived early the next morning. The '30' had dwindled to about 10... but that was still more people than the tiny area could comfortably accomodate. Later that next afternoon, I saw clergy talking with them. They were gone by the time I arrived Sunday morning.

There were so many 'surprises' with Shawna's first cardiology appointment. And I was so angry and frustrated... wondering if I had been intentionally deceived or just been given incomplete information. And now.. I still wonder about those things. I guess that I always will. But at that moment, I was grateful and content. At that moment, I imagined all that I had seen.. in the PICU, at the Ronald Macdonald house, and even in step-down. If I could take all of 'that', toss it in a grab bag, and shake it up... well, I realized that I would reach in and grab Shawna's condition in a heartbeat. Even if it was beating on the wrong side.

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And we're outta here

Soon. Just waiting for the discharge instructions.
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The irony

In my last post, I talked about (ok- I complained about) the lack of conveniently-located guest bathrooms on the pediatric floors. We are at a pretty large, world renowed medical facility with lots of bells and whistles. Its just weird.

But now, something else has my attention. Audio art. Yep- you read that correctly. Audio art. On the main floor of the hospital, you can take an audio tour of the displayed artwork. Rent a headset, oooh and ahhh at the pretty pictures, and it is just like being at an art museum. Really? Yep. Really. Let's see... I need a passport to get to the closest bathroom, but I can become educated in the fine arts without leaving the building. Weird.
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Day 5

Shawna is certainly improving at record-setting speed... But we aren't going home today. Probably tomorrow. She still has some fluid in the lungs. The goal is to avoid respiratory distress, so this is the best place for us to be right now.
In other good news, she screamed bloody murder when I left the room this morning...and continued to cry until I returned. (Side note: where did I go? Well, the non-patient bathrooms are so far away, they might as well have their own zip codes. Seriously! Who thought of THAT in the design? Yes, of course there is a bathroom in our 4 bed pod. But it's reserved for the patient use only. Hmmm... I haven't seen any patients use the patient-only bathroom... Our pod-mates are 7 weeks, 4 months, and 5 months old. I'm pretty sure they all still use diapers!!) Why is that screaming good news? Well, it means that she is finally alert enough to recognize her surroundings AND have an opinion about it. The past few days, she's just been too tired to care.

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Learning to 'wing-it'

Seriously. Someone 'upstairs' really wants me to learn to be more flexible. To be able to quickly adapt to schedule changes. And, to not complain about it. So far, I must not be passing the test...

A little background: I'm a "schedule" type of girl. I like to know the who, what, where, and when. And, frankly... I wanted to know it yesterday. We did not take Seth and Sara with us to China. So, our two week trip required a lot of planning and organizing. I may have gone a little over-the-top with the organizing part as I constructed a 35 page wire bound book for our friends/family that included: a daily schedule of events (both theirs and ours). Maps to school. Maps to the store. Bus schedules. Emergency phone numbers. Airline travel info. And even adoption related reading material on china's orphanages and adoption. Frankly, I was pretty proud of my book. It was even color-coded! As you can imagine, I got significant amount of grief from my family regarding my "book" and my OCD ! But darn-it, everyone knew what was going on every second of every day. So, what does this have to do with being flexible..??

Well, our entire China adventure has been an "exercise" in flexibility. First, we were planning to travel in late August. Then, we got 'surprised' with an early LOA ...and our agency wanted us to travel in July. We re-arranged, re-scheduled, packed and planned (and I stressed ) while we waited for our final TA. And, waited some more. Five days before our anticipated departure date, our TA still hadn't arrived. I was stressed out of my mind! But, we finally conceded that our travel wasn't gonna happen until August. So, we replanned,re-arranged, and re-organized again. I guess its also important to mention that both Dan and I work full-time. So, our employers are to be thanked tremendously for their flexibility with our ever-changing travel plans.
Well, we finally made it to China in late August. And nearly everything happened 'on-schedule'. Everything occurred as I expected... Until we got home. A simple VSD turned into DORV and a shlew of other things. Surgery was scheduled. Then changed. Then changed again. Cancelled. And then finally re-scheduled for this past Tuesday. Of course, every change required 10 kabillion phone calls to re-organize our family's schedule! Now, here we are.. Day 4. We are supposed to be 'in house' for about a week and up to 14 days. Tomorrow is Sara's 3rd birthday. Tomorrow, my girlfriends (that I haven't seen in months) are coming to the hospital for lunch. Tomorrow is a busy day, but I've got it all worked out. Four hours ago, they told us that we will probably go home tomorrow. Change of plans everyone. No lunch with girls. No balloons and cake at the hospital. Re-arrange. Re-plan. Prepare for discharge on Saturday. That was four hours ago. And, four minutes ago, they changed their mind. Probably home on Sunday. Sigh. I'm glad that I didn't make a "book" this time.
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Really?

I think that we are going home tomorrow. As in Saturday. Really? Yep. Really.
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Eating "O's"

Her favorite thing ever!! Cher*ios!!
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A Bow for Shawna

I meant to post this earlier.
Imagine my surprise this morning... When I arrived, Shawna had a cute little orange bow in her hair!! No- its not from me. And its not from Dan (he stayed with her last night and I went home for some much needed rest).
Its from our nurse last night, Kelley.
Apparently, she gave Shawna a sponge bath and "just couldn't resist." Maybe she read my blog from yesterday!! He he he!
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Day 3 update

Woo hoo! We are out of PICU!! They took out her chest tubes this morning and removed most of her IVs. She's gotta be much more comfortable!! (Her ICU nurse today was also "Shawna" although she spelled it 'Seana.' Funny eh??). Anyhoo- Shawna is doing great! And we aren't doing too bad either. Dan stayed at the Ronald Mcdonald house last night and I went home. So, we both got at least a little sleep. She is recovering so well Such a trooper!! Maybe we'll get to go home early?? (Ok- that's just my wishful thinking. No one here has even mentioned the word 'home' to us yet.) Regardless, we are out of critical care and into the step down unit. We are making progress!!
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Day 3

Its been a big day here!! Busy day actually (hence the lack of blogs). The day started off with MY cardio appointment. For those who don't know, I had an ASD repaired about 15 months ago. And I conveniently had a follow up appointment scheduled for today. Its funny in hindsight... I scheduled this appointment 6 months ago. And 6 months ago, we were just considering a switch to special needs. We were just beginning to explore all the possibilities. We were just beginning to search our hearts for the right answer. And honestly, I never thought that we'd be here... and by "here", I mean open heart surgery. In my mind, we would have a "simple" ASD or VSD. I specifically wanted to avoid anything tetralogy of fallot. Such a complex heart condition was beyond our coping ability. Or so I thought.
But, here we are. And we are coping. And I've only freaked out twice in the last 48 hours. Shawna doesn't have tetralogy of fallot , but its darn close and possible more complicated than ToF beacause of the dexracardia. There is nothing "simple" about her condition. Nothing at all. But we are here. We are coping. Shawna is healing. And I can't imagine it any other way.
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Sleeping Beauty

The breathing tube is out!! Yeah!! She is breathing well with great oxygen saturations. Her fever has finally subsided. And most importantly... She is sleeping. Very well. Finally.

In the midst of all her agitation, I joked that she was trying to escape!! I guess she just gave in.. decided that escape plan was a bust and she should just nap instead!!

The photo is of her resting peacefully... The ponytail in her hair is for my sister (who really thought she needed a bow or something to dress up her hospital look. Well, I didn't have a bow, Jen...so the pony tail will have to do. :-). And Dad... I sent the photo just for you..so you can see the difference that 24 hours will make in the PICU.
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Sleeping Beauty

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Morning update

The plan for today? Wean and extubate.

Wean... She is on a lot of meds, many of which are given to sedate her. In order for her to breathe unassisted, these drugs have to be discontinued. So, her last dose of Ativan was at 8 am. So far, so good. She is still agitated and cranky, but she's not yanking at her chest tubes!

Extubate... All morning long, her both meds and her breathing support have been gradually decreased. She has responded well and her blood gases look good. So, they will attempt to extubate her within the hour.
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The beginning of Day 2

Shawna had a decent night. And by decent, I mean that she responded within normal parameters. But, I can also tell you that our fabulous nurse never got more than 2 minutes to sit down. Shawna's night consisted of a balancing act of meds... Increase drug x so she'll calm down ... Then her BP would drop so they'd add/adjust something else...then she'd be agitated again but wasn't due for more drug x, so they'd give her drug y, etc.

She's been running a decent fever all night (that FINALLY broke), but in the process of treating it, they had to pack her in ice... Then her extremities got too cold but her fever was still too high. At one point, they had ice packs in her armpits, head, and groin ... And warmers on her hands and feet. Sigh. Poor little thing. Like I said, its been a interesting balance act to keep her sedated AND keep her pressures up.

Overall, it was a decent night. Shawna got a good,solid 4 hours of deep sleep. I got about the same. I've been up for about an hour... Showered, changed, and finished my first cup of joe! Rounds are at 8 so I will know more then.
Lori
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She is finally resting

Its taken a whole lot of meds to get our little miss Shawna to 'relax'. Seriously. The list is endless but includes Versed, morphine drip (titrated up at least 3 times in the last two hours), Ativan, and morphine push (which is just extra morphine).

She is responding as expected. She has a fever and her heart rate is high, so they packed her in ice and gave her Tylenol. Her blood pressure was low, so they gave her some more of Dan's blood left over from the bypass machine. (Side note: Dan now claims to be her blood relative!! Cute!!). Her sinus rhythm, which was previously normal, has a few issues (she is missing the P wave). All this is normal or at least expected post surgery stuff.

But the most surprising thing? She is super wiggly. Moving all around, especially when she hears my voice. Good from a bonding and neurological prospective. Bad for healing, primarily because she is trying to pull out her chest tube. So, her meds have been constantly adjusted during the past 4 hours. And she finally appears to have settled a bit. Poor thing.

Dan has left for home and I'm going to try to get some sleep. More tomorrow.
Good night,
Lori
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Surgeon report

Complicated.
Tricky.
Longer than expected.

Details:
-Normal sinus rhythm (ie/ no conduction issues, nerve didn't get in the way of the knife!!). This also means that her heart is beating normally and unassisted! Woo hoo!
-The VSD was obstructed and difficult to access. He actually had to make the hole larger in order to repair the defect with a very large patch (22 mm patch). He also had to remove muscle and the pull down the tricuspid valve to make the repair. Apparently, it was a pretty tricky procedure.
-ASD was a decent size and repaired without issue.
-Pulmonary valve looked good. He mentioned something about a patch in the pulmonary artery or valve.. ? I didn't ask for the details about it because I was getting the "please don't ask anymore questions- I'm annoyed with you look" from the surgeon. I let it go. I was just happy that the pulmonary valve was ok. And, admittedly, I ask a lot of questions.
-Overall, all is good. And he is happy with the outcome given the complexity of her condition. She has some leakage in her tricuspid valve (no doubt due to him moving it) but its minor. There is also some small amount of leakage around the patch. Again- its minor.

His parting comments to us:

" It was a tricky case. Fortunately, I still had a few tricks up my sleeve ...I used a few today. "

We should be able to see her in an hour.
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Sigh of relief

It's almost over. She's off bypass without incident and they are closing!!!

Details: Her pulmonary valve looked great! What a relief. She has a little regurgitation in her tricuspid valve (between the right atria and right ventricle), but it was minor.

We expect to meet with the surgeon after closing (in about an hour). And we will hopefully see our little Shawna by 4:30 pm.
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'Moment of truth' is next

If the echo looks good, they'll start warming her. Then... they'll re-start her heart. And, it needs to beat on its own. When will we breathe better? After she's off bypass.
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Beginning Echo

This means that the repair is complete. Well... it actually means that the surgeon THINKS that the repair is complete. The echo is "checking his work.". Stay tuned...
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12:30 pm update

"They're on the tail end of the repair," said nurse Jamie

Apparently, things are going well and the surgeon's work is nearly complete. They'll do an echo next. If everything looks good, they will start warming her up in preparation to remove the bypass.
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Taking matters into my own hands...

No, I'm not stalking the nurse for an update. But I did find her!! Since I have the same cardiologist as Shawna, I just meandered my way up to the cardio clinic to track down ANY nurse who would give me an update on Shawna. Hmmm... I didn't really meander. I walked with purpose!! Anyway-Panic had set in, so I was a force to be reckoned with. As luck would have it, I ran into nurse Jamie who assured me that all was going well. She just got caught up with a patient. Sigh of relief... at least for now.
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11:54 am. No update.

They are late.
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10:30 am update

Just talked with Nurse Jamie. Repair is going well. She expects that the repair will take a few more hours and he'll be done around 2-3 pm (which was our original estimate). I asked about the pulmonary valve (it may be non-repairable)... It's too soon to tell.
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9:30 update

So far, so good. Everything is proceeding as planned.

She went on the heart/lung machine without incident. And, while its really un-nerving to think that her little heart isn't beating anymore, successful bypass is a major milestone in the surgery.
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Still waiting for info

Well, it is 9:10 am. I'm on my 5th cup of coffee. (I think its time to switch to decaf.) We are still waiting for an update from the OR. In the meantime, here are some other random tidbits.

- We met the cardiothoracic surgeon this morning. He's very nice and "well -seasoned". In a case like Shawna's , we really value experience!! Anyway, his wife is still in the hospital, but recovering nicely.
- Dr. M anticipates that her repair will be complete by noon. Hmmm.. We were originally told 3 pm. We'll just wait and see...
- The surgical plan is to repair the defect and orient her vessels into their proper locations. The biggest risk here is damaging the conduction system...if it gets 'cut' during surgery, she'll require a pacemaker. He estimates that it happens about 2% of the time.
-Obviously, one of the biggest challenges with Shawna is her mirror-image organs. The surgeon has to constantly re-orient himself with her heart. Something that I hadn't thought about? They also have to re-arrange the equipment in the OR, he will have to stand on the other side of the table, etc. Fortunately, there is a whole shlew of folks in the room to help.
-Just outta curiousity, I asked Dr. M about how many situs invertus cases he sees in a year. I know that her condition isn't common, but its not completely rare either. His response? Ten in his career. Wow. That's not a lot. The rarity of her condition also explains the exceptionally high number of fellows that we met this morning. Again-- these teaching hospitals get all geeked out about the less-than-common stuff.

Ok- I'm going to go wander around now... Still waiting for our surgical update.
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Ready?

How am I supposed to answer that? Am I ready? More importantly-- are they ready? Yes. They are.

I just left the OR. Shawna is off in la-la land. The let me stay with her until she was fast asleep.

We had a really rough morning ...she screamed from the time we woke her at 5 am until the Versed kicked in at 645 am. After the happy juice (ie/ Versed), Shawna was completely at ease. Blowing kisses. 'Honking' our nose. And smiling!!

Then, they took us down to the OR and put on the anesthesia mask. She drifted off quickly. And just as quickly... they booted me out.
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An early morning...

Much earlier than expected.  1:30 am.  Yep-  that's what time I woke up.  At 2:30 am, I still couldn't sleep, so I took a shower.  And, at 3:30 am.. I'm updating the blog.   Why 1:30 am?  Well, that's the time that Shawna woke up... screaming. (and she's been sleeping through the night soooo well for the past 2 weeks).  The irony?  1:00 AM was the "cut off" for a bottle. Sigh.   Lori M. Baylor

The final countdown

Well, we are T minus 24 hours 'til Shawna's surgery. We're nearly packed and ready to go (again).  My mother-in-law is in route... She will be holding down the fort here while Dan and I do the hospital-home shuffle. Unfortunately, the 'wait list' at the Ronald McDonald house is significantly longer this week... I think we are #11.  Sigh.  So, they probably won't have a room for us for several days. We (well.. technically just I) had a pretty rough couple of days.  Too much to process and not enough things to keep me distracted. AND- I pretty much felt like crap.  So, that didn't help matters.  Shawna, on the other hand, continues to surprise me.  Sometimes good. Sometimes not-so-much.  On Sunday, she laid on the floor for hours... short-of-breath and tired.  Too exhausted to even sit up, let alone stand, walk, or play. Yes- that's a function of her heart condition (not from lack of sleep).  When she has her little spells, she just plops her head down and closes her eyes for a several minutes until her breathing resumes normally.  It's quite sad to watch... :-(  Well, it'll all be memory soon. I'm going to close out for tonight.  But first, a HUGE thank you to all of you for the overwhelming support!! We are so appreciative and need all the help we can get.  Please continue to think good thoughts and pray for a successful heart repair.  I'll update the blog as often as I can tomorrow....  Good night, Lori Lori M. Baylor

Surgery update

So far... So good. We (well technically Shawna) are on the surgery schedule for next Tues Oct 13th @ 7 am. Dan will donate his pint of blood today @ 10 am.

I'm still holding my breath. I've become a wee bit crazy with the Purell, so afraid that Shawna will catch something that will derail her surgery. So far, everyone is healthy. Well, almost. I'm up very early today because our CAT is sick. But that's a story for another day. Sigh.
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Uneventful bliss??

It's been a pretty uneventful week. It's supposed to be uneventful. I've been given strict instructions to hide Shawna from the rest of the world in order to minimize her chance of catching some flighty bacteria or virus which would cause her nose to run and cancel her surgery AGAIN!! I've taken these instructions pretty seriously... no errands or visitors and no trips to Target. Seriously!! And, to really ensure lack of human contact, I've stayed in my PJs for three days. No joke. So, we've been hiding alright!! Yes- I'm thankful for the 'uneventful' for many reasons. First, we don't get to be 'uneventful' around here very often. And, second, when something eventful is happening, we quickly go from "busy" to all out to craziness. (case and point.. we didn't just adopt a child... we adopted a child with a heart condition that is way more complicated than we original thought AND she is scheduled for open heart surgery WHICH has been re-scheduled 5 times in the last 5 days DURING which we had 7 other doctors appointments, a birthday party AND family photos. Did you follow all of that?? ) Well, for those who know us well, you all know... it's never dull around here. Anyhoo.. all of this uneventfulness has led me to one startling conclusion. I don't like it. Nope. Not one bit. Lori M. Baylor

More good news..

I talked with Sara's cardiologist today. All is good with the Holter monitor experience. She definitely has extra ventricular contractions... nearly 5000 / day. YIKES?? Nope. I guess that only works out to be 4 extra beats per 100 contractions. And while that still sounds like a lot, apparently it's not a big deal. Phew! One less thing to worry about. Lori M. Baylor

It's been a good day...

Three minutes and 20 seconds.  That's how long it took to schedule Dan for a blood donation for Shawna's surgery. I am still in shock.  It was way TOO EASY this time.  Of course, I didn't speak with "Fran".  Maybe that's why... Lori M. Baylor

A new milestone...

Shawna slept in her crib last night... in her own room. (Well, technically, Sara and Shawna share a room.)  Nonetheless, she slept in her crib rather than on the air mattress in our room.  The decision to move her to the crib wasn't pre-planned...it was a spontaneous decision.  Why?  Well, I found Shawna sitting on the stairs at 9 pm last night (having 'escaped' from our room)... just hanging out on the stairs with her sippy cup.  Hmmm... Time for the crib! And, other than some giggling at 6:15 am between the two girls, all went well! Lori M. Baylor

The silver lining...

The silver lining (or at least a part of it) of her surgery being moved to next week .... Dan can donate blood for Shawna's surgery!  Yipee-  I get to call "Fran" today. Lori M. Baylor

Plan E (yep- the 5th one)

Tuesday October 13th @ 7 am

The surgeon's wife is stable but needs surgery. So, he cancelled all cases this week. Now, we just need to ensure that Shawna stays completely healthy for 7 more days.
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Catching my breath

That's what I am doing today.  Catching my breath.  It's been a whirlwind of activity and emotion this past week.  Tons of doctors appointments, the fiasco with the Red Cross, MRI controversy, Shawna's surgery getting re-scheduled, then cancelled, then re-scheduled again, etc.   On top of all that, we had Sara's 3rd birthday celebration on Saturday.  I had a tremendous amount of help from family in order to pull off the event. On Saturday morning, two hours before our guests were to arrive,  I went to Giant Eagle to pick up the cake .. and they FORGOT TO MAKE IT!  AHhhhhh!!   (Yes- they were able to whip something together in 15 minutes.  My only requirement?  Purple flowers and Tinkerbell!) Oh- I forgot to mention that Sara's annual cardiology appointment was also last week.  Yes- I know. Our lives are crazy. Anyway, her pulmonary stenosis has been status quo for two years.  But, her EKG still looks a little weird.  Extra ventricle contractions.. which may mean nothing.  So, she had to wear a 24 hour Holter monitor last week to track the electrical activity of her heart.  Just one more thing... Sigh.  I'll call her cardiologist this week for the results. (No, her cardiologist is NOT the same as Shawna's cardiologist or even MY cardiologist.  In fact, Sara's physician is a part of an entirely different hospital system.  I really like him, though.  He was consulted on Shawna's file, so he is familiar with her condition as well.)  I know its crazy.... multiple physicians, multiple hospital systems.  But, it works for us.  And, if the "ivory tower" upsets me in any way, I already have a back up plan. Lori M. Baylor

Surgery cancelled.. no, I'm not kidding

... the phone rings at 10:58 pm. It's the clinic. This can't be good. For a split second, I thought that it may just be the crazy registration office, calling to verify my insurance. But, no. It was the surgical NP, calling to tell me.... The surgeon's wife was in a car accident... she's in the ER. So, no surgery tomorrow. Maybe on Tuesday. Sigh. Lori M. Baylor

Surgery re-scheduled for MONDAY!

The clinic just called.... Shawna's surgery was moved up to Monday. Yes, Monday Oct 5th... Tomorrow. While we are grateful to be the first and only case scheduled tomorrow, we are frantically trying to prepare. I will update the blog throughout the day, so stay tuned. And, most importantly, pray for a successful repair. Lori M. Baylor

The plan for surgery...

We had our pre-surgical appointments on Friday. And, whoa... what a long day it was! We started with registration, made our way down to radiology, back up to cardiology, over to the lab for blood work, and back up to cardiology for meetings with anesthesiology, our cardiologist, the echo tech, and the surgical nurse team. For those of you familiar with the clinic, you can appreciate how mentally and physically exhausted we feel!! Here's the brief re-cap of our 6 hour adventure:

-First, her surgery got bumped a bit. Sigh. She's now the second case scheduled for Tuesday. So, our estimated start time is about 1 pm.

-Surgery will be approximately 5-7 hours. That's a long time for us to stare at a wall.

-The good stuff: (1) she appears to have the perfect amount of pulmonary stenosis. I know that sounds weird, but it's true. In absence of the stenosis, her lungs could have been permanently damaged. Too much stenosis can prevent oxygenation. (2) She gained a pound. Woo Hoo!! The 24-hour feeding fest is reaping great rewards!! (3) it appears that her pulmonary artery and her aorta are in good position. It's too difficult to explain via blog, but just know that her great vessels are arranged in a way that will minimize the surgery a bit. The vessels don't need to be re-grafted or moved. That's a good thing. And, we are grateful for all the 'good' things!

-Her anatomy has been quite the talk at the clinic. While her mirror image organs are not rare, they certainly are not common. The teaching hospitals get really geeked up over this "weird" stuff. I'm already imagining an entire shlew of interns, residents, and fellows for morning rounds.

-And, finally... Shawna received the 'best baby ever' award from the cardiology department on Friday. Ok- not really. But, if they had such an award, she would certainly get it. Why? A two-hour echo WITHOUT the "happy juice" (aka Versed) They couldn't believe it. A 19 month old baby laid still and tolerated a two-hour echo. Twice. Yep- she's a trooper. :-)

He still surprises me...

Yes- I know that he's only six, but Seth still surprises me with some of his commentary. I've often described him as a 60 year old man trapped in the body of a 6 year old. He's an old soul... wise beyond his years. And, in our opinion, too smart for his own good. Get a load of this scenario:

A friend of my sisters had a baby with congenital heart disease; she had a fabulous book for us to borrow called "It's my heart." I was reading the book, so it was sitting on the kitchen table. After I put Sara and Shawna to bed, I heard Seth rustling around with it, trying to read it. So, I offered to help. Now, Seth knows that Shawna needs surgery to fix her heart, but that's the extent of his knowledge of her condition. He also knows that I used to have a "hole in my heart" that was repaired 15-months ago. Today- Seth and I studied cardiology 101. No, I'm not kidding.

I showed Seth the picture of a normal heart anatomy (you know... the actual sketch in the book. Not my chicken scratch version). I focused on the ventricles, showing him the septum/separation of the two sides. We compared blood squirting out of the heart with every contraction to a water balloon. He seemed to have a 6-year old equivalent understanding.

Then, I showed him a diagram of a DORV heart. He immediately identified the "hole" in the ventricle septum as the "problem". Then, he proceeded to tell me that the doctor just needs to build this 'wall' to make the two sides separate again and close it with the patch "just like they did for you, Mommy". Hmm.. did I mention to you all that is EXACTLY what the cardiothoracic surgeon will do?? He'll separate the ventricles with her existing extra tissue, then put a patch on the VSD.

Do you think that I should ask him to let Seth scrub-in??

I'm now certified....

A good friend of mine has an amazing ability to keep me grounded. When I'm ready to jump off the proverbial ledge... she talks me off of it. When I'm losing my mind, she produces a glass of Merlot. It helps that she lives next door. That way, the wine is never far away. :-) Well, given the circumstances of Shawna's recent diagnoses, I needed to cash-in on this great trait. In the midst of all of my babbling, she interrupted with "Lori, I know that you think that you're a cardiologist. But, you're not. Trust the REAL cardiologists. They know what they're doing." Fast forward to Monday of this past week. As I mentioned in my earlier post, I spent most of Monday and Tuesday on the phone. It was crazy. In the midst of the ten thousand phone calls with the Red Cross, I was also managing a similar crisis with the pediatric anesthesiologist from the clinic. The gist of the drama was regarding Shawna's MRI, which they decided to cancel. But, the highlight of the entire call happened in the first 28 seconds when the consulting anesthesiologist kicked off our conversation with Her: "Now, I understand that you are physician as well...?? in cardiology??" Me: "Umm.. excuse me? what?" Her: "You're a physician with us (ie/ the clinic) as well??" Me: "Oh- um, me? no. I'm not a physician." Her : "Oh. I um, thought that.." Me interrupting her: "No, I'm not a medically licensed physician (chuckling to myself), but thanks for the compliment!" My first call? My neighbor! My next call? My boss. Since I now have a shiny, new MD degree and practice at a world renowned medical facility, I wanted to ask for a promotion. :-) (Oh- I guess that I should mention this tiny little fact... I am technically Dr. Baylor. But my degree, a PhD in physiology, doesn't license me to practice medicine...but it does allow me to keep up with all the medical mumbo-jumbo most of the time.) Lori M. Baylor

It's not supposed to be this difficult

I got into a fight this week with the American Red Cross. Ok- that's not completely accurate... but, it wasn't a fun conversation. Why you ask? Well, I've been trying to arrange for a private donation for Shawna's surgery (she'll need at least one unit of blood for the heart/lung machine). Sounds simple right? I can donate a pint of blood. No problem! I've been a blood donor since I was 17 (... little known fact: I lied about my birthday at the High School blood drive so that I would be "18" and eligible to donate. It got me out of history class.) ANYWAY- I'm not a match for Shawna. I'm A+ and she is O+. So, my blood wasn't gonna work. Dan, of course, didn't know his blood type. So, we spent a week to type him. As it turns out, he IS the correct type. Great! Problem solved!! Except....

We ran into a bit of a communication problem. The American Red Cross absolutely insisted that our blood donation needed to occur at least one week prior to surgery... meaning that Dan would have to donate on Monday or Tuesday of this past week. The cardiology clinic told me to have blood taken 4 days prior to surgery... meaning today/Friday. Hmm... it's important to add that Dan was in Memphis until Thursday of this week. So, there was NO WAY for him to donate his precious pint of gold on Monday or Tuesday. But, Friday would be just fine.

For the life of me, I couldn't understand why we were receiving conflicting information. I kept arguing with "Fran" (not her real name) at the Red Cross. And, darn it.. she kept arguing back. She finally told me that 'it just wasn't going to work.' And, I promptly informed her that I had a "back-up" donor that would be available on Tuesday. As it turns out, my mom is O+. Fran tells me that Mom will need an appointment and she won't make an appointment without all the paperwork from the clinic. I assure her that I will GET the paperwork from the clinic.

I call the clinic to request the paperwork. The clinic tells me AGAIN that this blood donation shouldn't occur until Friday , not Tuesday. I explain to the clinic that "Fran" is about as flexible as a block of steel. Fran ain't budging. They fax over the paperwork. And, then... Fran calls me. Mom can't donate on Tuesday. The heart/lung machine needs "fresh blood", no older than 4 days. So, Fran sets up an appointment with my mom for today, Friday. She was much nicer to me on the phone at this point. Apparently, someone at the clinic called the hospital board about her "customer service". Opps. Sorry about that Fran. But, she really wasn't all that nice or helpful.

The irony of the story? I spent all day Monday and half the day on Tuesday trying to arrange this... lots of phone calls and a wee bit of unnecessary stress. Today, my mom went for her blood donation .... and her iron levels were too low. The Red Cross refused to take her blood. Sigh. It's just not supposed to be this difficult...

Alphabet soup...

DORV (click here for graphic of DORV versus normal heart anatomy)
ASD
PS
situs inversus with dextrocardia

I've been struggling to write this post, because I really don't know where to start. So, I've started with Shawna's cardiovascular diagnoses.. its a wee bit more complicated than we originally thought. All four are listed above. Yes- there are four of them. 3 of the 4 were discussed in the last post. The "VSD" diagnosis is now being replaced with the DORV diagnosis (double outlet right ventricle). She still has a VSD, it's just part of a more complex diagnosis called DORV. She has a double outlet in her right ventricle.... meaning that she has 2 vessels that leave her right ventricle, rather than just one. Both her pulmonary artery AND her aorta come from her right ventricle. In normal anatomy, her aorta would branch off the LEFT ventricle, not the right.

I'm not going to spend a lot of energy defining and describing each of these conditions. Frankly, I'm still learning about it myself. For the medically savvy, her condition is very similar to ToF (Tetralogy of Fallot) . For the curious, the above diagnoses have HTML links embedded. So, just click on the disease of interest, and another page will open with more information. You can get back to this page with the "back" button on your browser.


It's a lot of information to digest in a short period of time. And, frankly.. I don't think that we've digested it completely. We still have at least 2 more rounds of pre-op testing. First, we are scheduled for a MRI on Tuesday morning. And, on Friday Oct 2nd, we have our regular pre-op meeting/ tests. I'm hoping that these tests don't "find" anything else. Sigh.

So, the million dollar question: What the heck does all this mean?

Answer: I don't know yet.

Yes- she still needs open heart surgery. That didn't change.. EXCEPT her surgery will probably be a little longer than we initially anticipated. Outside of that.. I don't know . Her O2 saturation levels have been pretty good (95-97%) and she hasn't displayed any signs of heart failure. Her lungs? Well, I know that the pulmonary stenosis has protected her lungs... And, since no one has referred us to a Pulmonary specialist , I am cautiously optimistic that her lungs are just fine. As you all can imagine, I have A LOT of questions for our cardiothoracic surgeon. So stay tuned... there will be more to follow on that.

As for us.. we are all doing pretty well. Shawna is adjusting so well! It's amazing to watch the transformation as it occurs daily. You'd never know that her heart and organs are all mixed up and backwards!! She's every bit of a normal toddler now. She even got in trouble last night for trying to play with an electrical outlet. Now, I know that sounds weird... but, toddlers are supposed to get into stuff! (And, yes- we have outlet protectors.)

We are adjusting to life as a 'party of five' and it's been pretty darn good. Stay tuned for more later this week..

Lori

The heart of the matter....

We've been home for 2 weeks.  Wow!  The first week is really a blur... we were incredibly exhausted, suffering from jet lag and lack of sleep.  We unpacked, did some laundry, and Shawna had her first US medical exam.  That was the extent of our week.  That was about all we could handle.  Jet lag really, really sucks!!  Shawna also struggled to adjust to the time change, but adjusted beautifully to the 4 other rug-rats in the house.  Four?  Yes. Four. Seth. Sara. Max the dog. And, Mr. Oliver... our very large, 20 # cat.  :-)     As for the rest of our news.. I'll just jump right to the end.  Shawna is scheduled for open-heart surgery on Tuesday Oct 6th at the crack of dawn.  While we were prepared for this possibility, there were many surprises at our cardiology appointment last week. We knew that she had a VSD (ventricle septal defect).  Sometimes they close on there own.  Sometimes they don't.  Shawna's VSD is still pretty big, so she needs surgery to repair the hole. She also has an ASD and pulmonary valve stenosis. The ASD is a small defect between her atria (and the same type of heart defect that I have.. well, I had mine repaired last year).  And, the valve stenosis will also be repaired in her surgery.     The biggest surprise?  Shawna has dextracardia.  Her heart (and all of her organs) are transposed.  Her heart is on the right side of her body, not the left.  While the cardiologist has assured us that her surgery is not complicated by this, I am still a wee bit irritated that such an obvious anatomical difference wasn't disclosed in her medical report.  I mean seriously... someone in China had to know, right?  Grrrr.... Ok- I'll move on.   So, here's the rest of the scoop:  because of her dextracardia, her pre-op clearances took on a whole new meaning.  We've had doctor appointments EVERY DAY!  No joke.  Ultrasounds.  MRIs.  You name it.  We've had it (or will have it soon).  She's been a real trooper.  I'm just happy that we are able to give her this opportunity.  She would've never had surgery in China... they barely have the funds to provide adequate food. let alone cardiac surgery.  So, stay tuned.  The next 11 days will be crazy.  More doctors appointments.  Sara's birthday.  And, a host of other obligations. We meet with the international adoption physicians tomorrow.  I'll be interested to hear their findings... :-)

Home sweet home

I wish that I would've had my video camera rolling when we came home from China. The kids were sooo great with Shawna. So gentle, so soft-spoken. Sara, who had NEVER been described as quiet, was talking softly to Shawna... caressing her cheek, kissing her forehead, and assuring her that everything is going to be alright. So tender and precious. Shawna won't remember it... but we'll never forget it.

Going to the embassy and the red couch photos

I don't know why the "red couch" is famous at the White Swan hotel. I barely know why the White Swan hotel is famous. (The US Embassy used to be next door to the White Swan, making it a convenient place for US adoptive parents and other political figures to stay while in Guangzhou.) Red is a color of good fortune/luck in China. So, I guess the red couch is symbolic in that regards.

The photos above are of our journey to the US embassy. Cameras are not allowed inside, so I couldn't capture the swearing-in ceremony on film. After the ceremony, we changed the girls into their traditional Chinese silk dresses for photos at the White Swan.

The story of the pizza thief

This story is a little old (as jet-lag has prevented me from timely posting!!). But, it was very significant at the time. As I've previously indicated, our Little Miss Particular didn't want 'solid' food. She barely would drink her bottle. In the scene above... Jen and I are eating left-over pizza for lunch. Shawna expressed an interest in Jen's pizza. So, naturally... Jen offered her a 'bite.' Shawna recognized good thing... and took matters into her own hands. Literally!

All girl...

Dressed in pink, talking on the phone! Note the logo on the PJs... Daddy is so proud!!

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Eating is so exhausting...

We met with a nutritionist on Monday. Our little peanut needs to gain some weight. Get this: her target caloric intake is 1000 cal/day! Holy smokes that is a lot of food for an 18 month old. She's a real trooper with Cherrios and other solid food. Her bottles, on the other hand, are always a challenge. Sometime she just takes a break while eating!!
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Jet-lag sucks

Let's just say that no one is sleeping at the Baylor residence.  We are beyond tired and cranky.  And, I'm lacking my bloggin' mojo.  I'll post more soon.  This too will pass... just not soon enough.   Lori M. Baylor

Not ADA compliant

I just received this photo from a member of our travel group.  I laughed out loud- so, I thought I would post it.  So, here's the scene... it's ten thousand degrees in Guangzhou, exceptionally high humidity (hence, the bad hair days), and we are faced with MANY, MANY staircases. We had to carry Shawna up and down the stairs.  Many, many times.  In this photo, we were in route to the subway.  I feel tired just thinking about it. Lori M. Baylor

The gang

Hanging out with our travel group...

Photos from Guangzhou

Since I've been up for 2.5 hours already this morning, I'm using the time to update the blog. The following photos are from our last few days in Guangzhou. Some of these I've posted before (like the really gross, dried snake photos). The rest should be self-explanatory.

Shopping with Ann gave "shopping" a whole new meaning. Granted- I'm not the shopper. Frankly, I hate shopping. But, this was really fun!! The first couple photos are of Shawna hanging out in the room while we were getting ready.

A Correction...

It's come to my attention that I made a wee bit of an error on Shawna's video. What's that you ask??? Well, on the last slide, I mistakenly gave Shawna the wrong birthday. Her birthday is February 16th. Not February 26th. Now, Dan's birthday IS February 26th. I wonder how many times I'll screw that up.

It's good to be home

It was a great 'reunion!'. I have many more pics and stories to share...but for now, I'm off to bed! Thank you for following our journey!
Good night!
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God Bless The USA

We made it to Chicago!!! We are thru immigration and customs, and multiple security checkpoints. Seriously. There has been a TON of checkpoints. Our luggage has been screened so many times that its nearly radioactive!!. We are tired and weary, but happy to be on the last leg of our journey.
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And, we are off...

We left the Victory Hotel at 7 am with our visas, passports, and a whole bunch of luggage. We are in route to Hong Kong to catch our international flight to Chicgo O'hare. Here's our exciting agenda for today:
3 hour drive to Hong Kong
2 hour 'wait' in Hong Kong airport (I wonder if they have normal bathrooms in Hong Kong..??)
14.5 hour flight to Chicago
2.5 hours of customs/immigration and 'wait' time
1 more hour of flight time to get home
1 hour for unloading, baggage, and travel to HOME

If my math skills are correct, we've got a fun-filled 24 hours of travel!! :-). Wish us luck!!
With love from China,
Lori, Jen, and Shawna
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The US embassy

Our visit to the US embassy marks the completion of our journey in China.
We've filled out all the necessary forms and paid all the required fees. We've had things notarized, certified, and translated. Shawna has her Chinese passport. And, today.. she received her US visa.
I'm ready to go home. I miss Dan, Seth, and Sara. I miss 'normal' food and 'normal' bathrooms. I miss instantly knowing what day it is... I find myself asking that question many times per day. I am looking forward to brushing my teeth with water from the tap, rather than having to boil it first. I'm tired of having to divide the cost of everything by 6.7 in order to adjust for the yuan. I can't do that math quickly in my head. And, I am really looking forward to sleeping in my own bed. I could go on..but I won't.
You see... I could spend twenty more minutes listing all the things that I miss and all the reasons that I want to leave. And, I really am ready to leave ... I am just saddened by our upcoming departure. Not for me, but for Shawna. Regardless of the insane public urination issues or the fact that the eat pig intestine, China is her home and her hertiage. Its all she's ever known, yet she'll never remember it. She'll leave here on a Chinese passport as a chinese citizen with a US visa. Once the plane lands on US soil, she becomes a US citizen! But... she will simultaneously relinquish her Chinese citizenship. Yes- I can think of a thousand reasons why I want to go home and why our home is a better place and a better way of life. I can think of a thousand reasons... I just hope that Shawna can too.
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Things that made me laugh today

1. Starbucks opened at 7:08. I know this itself isn't funny, but listening to Jen complain about their tardiness was funny! I guess its important to mention that it was raining this morning.
2. People doing Tai Chi or something in the courtyard. Doesn't anyone work in this town? People are always playing cards or dancing.
3. Running thru town with Ann. She's was our personal shopping guide. No, I'm not kidding. We take our shopping very seriously!! We had sooo much fun. But man- we were exhausted!!
4. Watching Shawna steal Jen's leftover pizza outta the box. Then watching her eat it!! :-) This was truly a highlight!!
5. Lunch today made me laugh. We had peanut M & Ms, a popsicle, and Sprite (because the Diet Coke here is Coke Light and its gross!). Our food options are limited!!
6. Dinner really made me laugh, but not in a good way!! The first entree on the menu was Duck neck. Then pig intestine. Something about feet came next. We went for fried rice WITHOUT any meat.!

And finally-
7. At the US embassy.. A sign on the back of the bathroom door which said "Please keep your feet on the floor! Do not stand on the toilet seat!!" :-)
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My first McDonalds

Are you kidding me? The transformation in this child has been nothing less than amazing.
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Its like New Orleans in July

We are at the Chen family museum. Its hot and humid like we've never felt before. Tomorrow, a cold front is moving in. Its only gonna be 93.
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