Thursday, July 31, 2008

Homecoming and many !!!!!!!!!!!!




Leslie, you have reduced me to tears of joy!  Our "Welcome Home Miles" and balloons made our arrival home much more special.  And what an awesome surprise!  You made our house look happy to see us again.  I know the feeling was mutual; I wanted to kiss our sidewalk hello!  I was feeling nervous about many things as we hit the top of our street- new care routines, signs to watch for, medication dosages. . .  But by the bottom of the road, I was all grins and tears.  You brought me back to my center, to the place I needed to be, in the zone for appreciating the miracle that just happened.  Our son had open heart surgery six days ago, and now he asleep in his favorite swing.  At home.  Miracle witnessed.  Welcome Home Miles!!!!!   

Wednesday, July 30, 2008

Break Through

Quick update on our little patient: Looks like me might be discharged tomorrow!!  His vitals are beautiful; his incision is healing nicely.  A new little snag has surface.  Miles has developed a yeast infection at the site of his neck IV.  Though the IV has been out for a few days, this still raises some red flags.  We are using 2 different forms of antibiotics- one oral and one topical.  Infections and heart surgery are a dangerous pair- can't have anything nasty near the incision.  And since his little body is so small- that is not a far distance to travel.  If we do in fact leave tomorrow, we will be armed with meds and proper care information.  A plastic barrier of sorts will be stuck on his chest to keep the yeasties and spilled meals at bay.  Miles also smiled more today than I have ever seen.  He's on cloud nine and feeling fine!

As for the breaking through, that is my handiwork.  Yesterday was chock full of insight and personal growth.  I examined my fear- the fear that reached its apex on Friday.  Revelations revealed that my fear was motivated by guilt.  

When our child was diagnosed with Down Syndrome, the physician's first words were, "It's not your fault."  I think she knew to look at me when saying this.  Though we made eye contact, and I nodded my head to indicate comprehension, my ears and brain were not connected.  I heard this exact statement from three other doctors- must be in their code to comfort the parents, soften the blow, ease the adjustment.  Whatever, they are only words.  Well intentioned words, but words none the less.  Words which are not powerful enough to change our personal trajectory, our chosen path, the obstacles that lay before us.  Words that can't make my son healthier.  Words that did nothing to alleviate my guilt.  

It was not until yesterday that I could fully examine my self-generated burden, this weight of feeling responsible for my son's genetic disorder and his less than perfect heart.  Logical thinking has never been available to me in times of distress.  That nasty tide of self-loathing and blame-seeking washes in when there is ever a chance I might have screwed something up.  Yep, I have been battling perfectionism for years.  Nasty way to view one's self- as never good enough, always at fault, and being less than.  True to form, upon learning about my son's situation, my family's new path, the seeds for a melt down were planted.  Oddly enough, I have been so distracted over the past 2 months, I haven't had much time to dwell on my blame for more than minutes at a time.  But that negativity from those brief but recurring moments added up.  They congealed and formed a monster much larger than I have ever encountered.  

This beast, this black smog, this carnivorous entity that was slowly coating my thoughts, left me in a total state of funk.  Not the party funky, like disco, but a more snarky and agitated funk.  It was like I took all the fun out of funk.  Brittle to the world around, quick to draw my gun-everything I felt and thought was tainted.  Stained with a sense of failure.  In my heart and deep inside of my soul, I felt that I had failed Miles, that I failed at growing him healthily.  

I get genetics; I know how it works.  And on the rational level, I know that having a baby is always a game of cellular roulette.  I've done Punnet Squares- yes, a pink geranium is spawned from red and white geraniums.  But my baby is more complex than a flower; his genetic code stretches for miles and Miles.  I would answer on any standardized test which option A- that this is not my fault.  Give me an inkblot test, you would have gotten a different answer.

Now add in the fear of the surgery.  This proved to be a soul-splitting combination.  The guilt from being an inadequate mother X the terror of losing your child during a complex but necessary medical procedure= one of two things.  One, a chance to completely shut down and slide further down the rabbit hole.  Two, break through the wall, shed the chains, and accept life- simplicity and complexity in all.  Thank God and Monty Hall I chose door number two.  Life was getting unbearable.  I feel a billion pounds lighter today; my shoulders a lacking the weight of the world.  My sunset moment from last night was a direct product from my transformation.  A transformation born from the most intense meditation session I've ever had.  A meditation session I was ready for, and a transformation I was ready to accept.  

So, will I be sunshine and roses from here on out?  Not even close.  I am still me, a foolish dreamer prone to nightmares and unnecessary bouts of negative fantasies.  My mind will always gravitate toward the pessimistic side of the street.  But I will chalk that up to my strong streak of realism.  Guess I shouldn't have read "A Clockwork Orange" when I was twelve. . .But no regrets today.  I am spending all of my energy on loving my family and accepting that life is out of my control. 

Monday, July 28, 2008

A Reflective Sunset

I just watched a beautiful sunset.  And as I the sun sank behind a blue, low-lying Virginia mountain, my mind was clear.  It's been over 2 months since I could enjoy something for longer than a minute without thinking about Miles' heart.  Though my worries are not all gone (are they ever as a parent???), I felt secure and grounded.  I am awash in a new sense of serenity.  My little boy is making great strides in his recovery, and his mother is loosening the knot in her stomach.  I don't know if I will ever be able to commit to words the true fear I felt on Friday.  Actually, it's doubtful that I have been completely honest with myself.  It's quite possible my rational brain switched off the moment I handed Miles over to the surgical team.  Deep thinking never helps my survival skills, and this has really tested my inner strength- more than I will know for a long time to come.  Chances are that this situation's intensity was (is) more than I could (can) handle.  Maybe I am only feeling what I need to feel right now.  I bet on our drive home, whenever that may be, a huge sob of relief, gratitude, and remnant fear will escape my mouth.  

These eyes are still fighting the urge to constantly well over.  Deep breath in.  Deep breath out.  I am still taking these days with one breath at a time.  

The Charlottesville sky is growing darker by the second.  Time to return to Miles' side, squeeze his little hand, and hug Jesse- my partner through this storm.  Goodnight beautiful sky and dear friends!  More words in the morning. . .

Mama's little spitfire

Jesse and Miles had a pretty good night last night- that is until his blood was drawn at 4 a.m.  It took about an hour to find a usable vein.  Unfortunately, little man was stuck numerous times.  Sounds like they were trying to tap an unwelcoming keg.  It took 2 doses of fentinel and 1 dose of oxycodon to calm him down.  Miles was hotter than a disco inferno; he was madder than Hades.  He has quickly earned a rep in the PICU as a spitfire.  Honestly- I am glad that I missed the chaos.  Though lonely last night, I was able to get some decent sleep.

More good news- looks like Miles will move out of the PICU today.  Though the chest tube is still attached, no signs of infection have surfaced- the blood cultures haven't grown anything in over 2 days.  I was able to look at his incision this morning, such a clean and straight line.  We were both present as his bandages were changed.  His chest wires, the lines to the back-up pacemaker, were also removed.  And we get to keep them!  At first, the prospect of carting around used medical equipment triggered my upchuck reflex.  Jesse eagerly snapped at the offering.  How often do parents get souvenirs of items that have touched their child's heart?  Clearly this is not a large marker, but this will make an interesting addition to the baby book.

Sunday, July 27, 2008

"She must be from Tennessee."

The phrase above was uttered by my observant father.  Miles' Grandaddy W noticed plastic medicine cups used as IV port protectors and made this assumption.  It's cool; my dad grew up in Tennessee.  Apparently inhabitants of the Volunteer state are adept at impromptu riggings.  My dad is a good example of this inventiveness.  Duct tape and bungee cords can solve almost any crisis.  He even repaired his mother-in-law's (my Granny's) Caddie with a roll of duct tape- eat your heart out MacGuiver!  Furthermore, my grandfather used epoxy for everything- even dental work.  Chipped tooth- not with a tube of epoxy on hand!  Our day shift nurse got creative and used plastic medicine cups to keep Miles' IV ports in his foot and his hand.  The protective shield of socks and tape were not strong enough to block his kung-fu kicks.  He dislodged the foot IV late last night, and he was working on his oxygen tubes when we arrived this morning.  Miles looks so silly with cup parts taped on his extremities.  He sounds even funnier when they clink together.  

We received a so-so report from the lung fluid culture.  The on-call doctor said some of the screening number were a bit too high, but the triglyceride levels are still low- which is very good.  This means we can't be certain of the presence of an infection.  The staff will continue to monitor Miles for other signs.  He hasn't had a fever since last night- even better news.  Miles is also eating like an ox- his ability to take formula means he no longer receiving "food" via IVs.  Potassium and calcium levels are looking good.  

I am going to be extra alone tonight.  Miles was moved to a private room today.  We are out of the cardiac bay but still in the PICU.  This means we can finally stay overnight; only one parent at a time.  Jesse wanted to take the first shift.  I don't think he could stay away any longer.  He was actually prepared to sleep in the PICU waiting lounge today- the location of that circus that earlier irked me.  But he was been spared sleeping on the floor.  Tonight Jesse will slumber on a padded bench right next to Miles.  I will be there tomorrow night.  Cynthia, you are certainly right- we need are rest when we can get it.  So I will take your advice now and head to bed. 

Too much fluid

"Two steps up, one step back. . ."  Miles had another rough night.  His nurse kept trying to feed him, but there was little (other than meds) that would calm his temper.  A chest x-ray this morning discovered an increase in fluid build up.  A team is placing a "pigtail" chest tube in right now- hence my freedom to type earlier than normal.  The whole procedure should take less than an hour.  Once the fluid starts draining, a sample will be tested for possible infection.  His doctors are doubtful that this is the case, since he is not showing other signs- like fever.  Before signing the consent to have the tube inserted, I was able to personally review the x-rays.  The change in fluid levels is clearly evident; there is a new pocket of gunk that wasn't there yesterday.  This hospital has been great at keeping Jesse and me informed, though sometimes I feel like ignorance would be bliss.  I must work on not attaching emotional values to medical news- it is what it is.  Deeming developments as "good" or "bad" will not help me cope- especially if we are to face more "bad" news.  But honestly, I've never been accused of being a stoic.

Miles was given a direct oxygen line last night.  Apparently his levels were low last night, in the mid 80's when they should be at 95 or above.  I am sure his fussiness and continual wiggling of the pulse socks have impacted the readings.  The lung fluid build up has also lowered his oxygen levels.  I have been hypnotized by his monitors- each with an array of colors and beeps.  An array of information is available, and it is all coded into waves and appeasing hues.  I think I zoned out to his main display for over an hour yesterday- watching the yellow respiratory rate lines, the blue oxygen level lines, the red heart rate lines. . .a mini-medical rainbow.   

We had to leave his bedside just a few minutes ago.  They allowed us to stay until he was sedated.  Hopefully, we will be right back in less than an hour.  I can't wait in the lounge, way too loud.  The other family in there is blasting the t.v.  and running around.  I am way too off-center to handle such distractions.  As I type this, I am seated in the adjacent hallway, listening to the elevators whirl by.  Not many people stop on this floor.  As for my current emotional state, I am not quite sure how I am feeling.  Agitated for sure- annoyed by the loud visitors- jealous of their jovial mood- and clearly grumpy from a lack of solid sleep.  I know my nerves have been kicked up a notch with the news of the new lung fluid.  

Ahhh- there they go; the loud family has just boarded the elevator.  I now have to find a way to disconnect that television. . .Hopefully, by the time they return, I will be back with Miles and feeling more patient to handle life's regular ebbs and flows.  Once he is stabilized,  I will sneak out to post an update.   

Saturday, July 26, 2008

Another Amazing Day

Last night Miles' breathing tube was removed- around 11.  This happened well before it was expected.  Initially we were told to expect to have him on a respirator for several days following the surgery.  But our Boy Wonder had different plans; he was ready to breathe on his own.  

In fact, our biggest concern of late is that he is too wake and alert.  He needs to be calmer and rest more.  When Jesse and I arrived bedside this morning, we were greeted with tales of our son's late night hi-jinx.  He had to be sedated with several different medications of increasing degrees of strength, and his hands were "gloved" (covered with socks) to keep him from pulling out his IVs.  A quick side note, the socks in question are those infamous hospital socks with the rubber tread strips on the bottom.  These socks are sized for infants, little people too young to walk, too young to require anti-slipping protection for the walking they are not doing.  Another one of life's mysteries.  Back Miles' need for multiple sedatives, the night nurse said our son was "no cheap drunk."  Ha!  I love it- what a straight forward analogy.  Miles was ready for action not 12 hours after having open heart surgery.  

I fed Miles several bottles today- watching that Similac Advanced disappear brought me several moments of Zen!  Joy aside, feeding him is a bit scary.  Our man is still hooked up with many wires and tubes.  To feed him, I have to use one arm to prop his body up and another arm to steady the bottle- while he remains seated in his bed and me perched on the side.  Burping is even more nefarious.  Both arms are on his back.  One arm steadies and elevates his back; the other arm is there to lightly tap out the air bubbles.  I barely hit his back; I am afraid of hurting him.  Keeping food dribbles off of his bandaging is also difficult.  Miles is slurping down the formula faster than it can flow.  Excess gulps trickle down his chin(s) and race toward his chest area.  If I am doing the feeding, Jesse is on facial mopping duty.  Jesse thinks we are on a work payment plan- we have to do some of the required duties to off-set the huge bill heading our way.  We are even changing his diapers now!  Days of full-service hospitals stays are long gone. 

Miles also tested our maturity level tonight.  As expected, Jesse and I still get our jollies from adolescent humor.  Specifically, as we were reviewing his current medication usage with the night nurse, Miles started passing the loudest gas.  Not mere toots, this boy had hidden a foghorn in his diaper.  As the nurse went into a speech about chloral hydrate, Miles provided the background music a la his bun's bass.  Jesse and I suppressed some serious giggles and avoided eye contact until Miles' guttural symphony subsided.  I think Jesse was proud.

We are all doing fantastic.  I haven't more relieved about anything in my entire life.  As we left the hospital for the night, I cried because I was so happy.  I still feel the same, even though leaving for the night is near impossible.  Jesse and I are like gum on the bottom of shoes- we stick to his side during the day.  As soon as Miles gets a private room we plan being present on a 24-hour basis, with us rotating night shifts.  But for now, we know he needs his rest.  Here's hoping the staff will help him get some rest tonight!

Friday, July 25, 2008

All Patched and Pumping!!!! Yeah!!!!!!!!!!!!!!!!

(Pardon any typos- I have never been so tired as I am right now.  But this exhaustion is worn with a smile!)

This was a day of many "mosts".  This was the most scariest, amazing, thankful, and appreciative day we have ever lived.  Miles sailed through his surgery- both defects repaired without a hitch.  We got glowing reports from numerous staff sources once the operation was done.  

Our experience was mainly compounded by two major delays in starting- we had to wait 2 hours after our initial start time to have anesthesiology start their work.  An additional 2 hours were added on because Miles' surgeon was called to cover an emergency situation.  The actual operation didn't start until 2 p.m.  I held my breath from then until 5:30, when our surgeon met us in the waiting room.  Have you ever dreaded and longed for something so much at the same time- well, I did.  Jesse and I longed for the procedure to be over, but then we were very nervous of the outcomes. 

 All that additional hand wringing and stomach acid was put to bay- Miles had no complications from the operation.  His heart, as I type, is pumping on its own.  Not 5 hours ago, that same heart was open and empty of blood.  Now it courses with new blood and a renew strength for life.  In fact, Miles blood oxygen levels are now higher than before the surgery.  We are already seeing improvements, and it's only been 4 hours since he was released from the OR!  

There is a good chance that Miles will be taken of the ventilator tonight!  He is breathing on his own, though his lung pressure is a bit low.  There is no rush to remove it; managing his pain is the top priority.  Miles was stirring when we first visited him around 7 p.m.  When we returned at 9, his eyes were open!  However, our little man was a bit too hyper for all the tubes and wires attached.  He was given a sedative; can't have him remove his own chest tube seeing that he's not quite finished with med school.  We were not allowed to spend the night tonight.  He is in a special cardiac PICU bay with his own nurse.  He will have 1:1 attention tonight.  That will certainly make me sleep more soundly.  As soon as he leaves the cardiac unit and moves to a private PICU room, Jesse and I will take turns spending the night.  Additionally, the hospital offers Wi-Fi to parents on our floor.  Many updates to come. . .

But for now, I bid you dear friends good night.  As our heavy eyes hit our welcoming pillows, know that are hearts are filled with gratitude for all the love we have received.  Our son Miles is a blessing.  His strength and fortitude are blessings.  Our network of care and support is a blessing, a blessing you all have made possible.  

Thursday, July 24, 2008

Acceptable Risk

Today was the hardest day of my life.  And oddly enough, I find comfort in the knowledge that it have not have this status tomorrow.  For tomorrow will be infinitely more difficult than today.  Weird- I know, but I will take comfort where I can find it.  At least today, we can relax a bit, laugh, and stay in our little bubble. . . I entitled this entry after the discussion we had with the surgeon's assistant earlier this afternoon.  We had to sign several consent forms- forms that covered the risks involved in tomorrow's procedure.  I think we knew what to expect, but hearing it in person takes it to a whole new and unwanted level.  No parent should ever have to hear this news.  Low percentages and good odds sugar coat nothing.  I wish to God that it did.  Feels like my optimism stayed behind in Williamsburg.  I didn't cry until after the assistant left the room.  Why I have to act brave in front of strangers is still a mystery- for my eyes ultimately deceive my act.  She repeatedly stopped and asked if I was okay.  At least I didn't lie- I said no.  But who would be okay at a time like this? 

She was very straight forward, and I appreciated her candidness.  What a job she has, to review this information with different parents on a daily basis.  How do you share these kind of statistics with petrified people?  Well, she does, and she did.  

We have two major hurdles to clear tomorrow, aside from the surgery itself.  First, there is a 5% chance that Miles' natural pacemaker (nerves that carry the electrical impulse that make his heart beat) could be nicked while stitching in the patch.  If this happens, Miles will be given a pacemaker, which will be implanted several days following this surgery.   His dependency on the pacemaker would be unknown until he has fully recovered from the first surgery.  Secondly, his heart and lungs will have to start working on their own; these functions will be externally controlled during the entire procedure and for sometime following.  He will be on a ventilator and a "heart and lung machine."  The ventilator will be in place for several days post-op, mainly while he recovers in the PICU (pediatric ICU).  Since this is by-pass surgery, his heart basically stops functioning, and all of the blood is removed.  The "heart-lung" machine will do the work for him.  If all goes well, that machine will be removed.  And if he regains his strength, the ventilator is then taken out, and he will breathe on his own.  

Another obvious risk is the big "D."  Jesse and I have been thinking about this outcome separately, prior to our meeting today.  But we have not openly shared our thoughts on the matter.  It's as if talking about "D" will make it a viable possibility.  I won't even type out the word in this forum- for it is too close and too real.    

I felt sick to my stomach hearing the risks.  I feel sick again writing it.  But as my title indicates, we have no other options.  And this operation needs to happen now, or so says the surgical team and attending cardiologists.  Jesse and I also want this operation for Miles- and we are very lucky that it is available so close to our home.  We mainly want the operation to simply make Miles becomes stronger and live longer.   

The doctors and nurses encouraged us to get some sleep tonight; I fear that my dreams will be about life-support machines.  Or maybe I will stay awake just to listen to my son breathe, which is turning out to be a precious and endangered activity.  

Upon leaving the hospital, Jesse and I made a pact- once we get through Miles' surgery and recovery, our goal is to give him the happiest and most comfortable life possible.  His tiny body will be encumbered by countless wires, plugs, stitches and tubes- a situation unfortunate for any child.  By the end of tomorrow afternoon, Miles will have experienced a life more difficult than most adults ever do.  We are in accord that this will be enough stress to last us all for a lifetime.    

I ask that tonight, you continue to hold us in your prayers. And again, tomorrow at 9 a.m- the time we turn Miles over to surgical team.  Every one's love and support has meant the world to us.   Your strength has given me strength.  Thank you.

Tuesday, July 22, 2008

We heart Ugly!



We love our Ugly Dolls!  Miles uses them for chewing, squeezing, confidants, and general loving.  I slip him "Ox" (our name for the prominently featured blue creature-his real name is Big Toe) at nap times and bed time.  Miles will hug Ox and gently pet his back.  Ox gets a real massage from Miles- it's hilarious.  Ox's ears are also snacked on until slumber arrives.  Ox and his other Ugly friends are the first stuffed animals Miles has shown interest in.  They are thin enough in diameter for him to fully hug.  Their coats are made of a super soft felt, perfect for wiping up drool, too.  And as their name indicates, these dolls are ugly.  But they are so ugly they are adorable.   Every one should snuggle an Ugly doll at least once in their lifetime.  Uglies for all!

Sunday, July 20, 2008

A new treasure





Last night Miles and I read a new book entitled, "Love You Forever."  This was a gift from Katie, my brother's girlfriend.  Katie said that this book has been a favorite of her mother's for some time.  After reading it with Miles (and getting teary-eyed), I can see why.  The mother in the story sings to her son at night, as an expression of love.  I do the same.  I'd sing all day long if I could, but I have to learn some more Beatles songs.  Miles is proving to be a Beatles man while Mommy is still in Camp Rolling Stones.  "Brown Sugar" just isn't an appropriate lullaby. Looks like Dada gets the swing vote.  The cover of this book is too precious.  The son is sitting in the bathroom, dangling his mother's watch over the toilet.  Kinda reminds me of me- I think I used to filled my dad's shoes with apple juice.  Forgiving flushed watches and cidered loafers is a true testament of unconditional love.  Thanks Katie- this book is certainly a treasure!

Saturday, July 19, 2008

I need to whip out the thank-you notes, stat!




We are back home, and I will be spending the remainder of this hot afternoon writing thank-you notes.  Some special treats arrived in the mail while we were out.  The day before we left I got a package from my Kristin.  Kristin has 3 boys of her own, and we have been friends since elementary school.  I am amazed that she had time to make it to the post office!  She sent Miles the cutest outfit and rain coat.  Too cute!

The above onesies were handmade by my amazing friend Becki and her momma Annelle.  Becki and I date back to our freshman year in college.  She lived across the hall from me, and she was crazy enough to live with me the following year.  Both designs are sacred in this house.  "Silly Biscuits" is my favorite nickname for Miles.  "The Dude" is the Thomas family patron saint.  In fact, my license plate is a take-off on that movie!  (The Big Lebowski)  Some day I will cart Jesse and Miles off to Lebowski Fest.  If we make it by next year, Miles will have the perfect outfit.  In addition to the coolest onesies ever, Becki also included some essential items for our hospital stay: facial wipes, nile file, pocket-sized teeth cleaners, teething tablets in a funky box, stickers. . . enough to keep us clean and happy!

The blue box is from "Annie's Sugarbuns Bakery."  Though I have never been there, it is already my favorite bakery.  Annie is my mom's cousin's daughter's daughter- let's just say she is my cousin.  Annie's box is full of the tastiest treats and a very sweet drawing for Miles.  I am taking the chocolate; Miles and I will share Annie's drawing.

The final picture is a P. Buckley Moss lithograph print entitled, "With All My Heart."  This is from my cousin Ann, and it really  moves me.  What an excellent interpretation of the love a mother has for her child.  And I love the fact they are embracing inside of a heart.  I feel like I am living inside of Miles' heart right now; it seems like everything I do is centered around it.  When I look at this print, I will remember how Miles' heart is bringing our friends and family so much closer together.

And a huge shout out goes to my cousin Shelby and her husband Jason.  They have opened up their house to us during our stays in Charlottesville.  They live less than 10 minutes away from the hospital, an amazing convenience.  We are so thankful to be spending these stressful days in a warm and welcoming home. 

Saturday Morning



We are playing morning nap time hookey.  Little Man has been up for almost 3 hours and is showing no signs of fatigue.  I, transversely, am falling asleep at the keyboard.  

We are headed back home today.  So long Charlottesville, but we will be back in 4 days for the long haul.  

The stress from Miles' MRI has left me wiped out.  How am I supposed to make it through his surgery?  I guess by remembering to take it one day at a time, one adorable photo at a time!

Friday, July 18, 2008

Milestones: Hope in a 16 year old "bottle"

Milestones: Hope in a 16 year old "bottle"

Hope in a 16 year old "bottle"

"I could be bounded in a nutshell, and count myself king of infinite space, were it not that I have bad dreams."
-Hamlet, scene i

I started this thread yesterday.  I wrote a significant amount, looked it over, and felt a certain dread that I was temping karma by sullying the names of our new doctors and nurses.  My tone was negative and my attitude was less than pleasant.  I was not actually angry at the targeted staff; I was angry because yesterday was long and hectic.  Heaven forbid I write something regrettable about any team member who will be working to save my son's life.  My words were frustrated and hopeless.  And for the first time, I actually felt worse at the end of my rant than when I started writing.  So I deleted everything; today I am being more rational in my observations, that is until you reach my diatribe about bees.

Our first venture to the University Hospital initially felt like it was more effort than it was worth.  Nothing compares to hearing a registration attendant say, "Are you sure that doctor works here?  I've never heard of him."  Hooray, so our surgeon must be some wandering vagabond who plans on popping into the OR for a quick can of pork 'n' beans and a new blue bandanna for his mutt Scrappy. Turns out he is the real-deal, the head of pediatric heart surgery, and not the hungry drifter I originally cast him as.  Three different offices and five receptionists later, we finally met him.  We were human ping pong balls- paddled from pediatrics to primary care to pulmonary and vascular health, simply because nobody bothered to do a little detective work.  Each receptionist was certain we were due at her suggested location, and that the previous receptionist was completely wrong.  Sadly, their crystal balls were clouded, and their attentions were commanded by whomever they were texting.  Finally, a kindly cardiology nurse saw our frustration and took over.  She make a few phone calls and had the surgeon come to us.  After all of our huffing and puffing, it was nice not to have to return to the building we just left.  We should have given this nurse a five dollar tip!  

After racing around multiple floors, in two separate buildings, our introduction with the surgeon was anti-climatic.  I felt like we should have found the Ark of the Covenant, or at least a crystal skull.  Instead, we met a middle-age guy who said he was "just trying to make it through the day."  And adding salt to my fake wound, this doctor seemed unimpressed at our situation, rather ho-hum about the procedure, which he says falls in the mild to moderate range of difficulty.  So why am I complaining?  Wouldn't it be ideal to hear that Miles' procedure will be simple, with manageable and acceptable risks?  I felt foolish for holding out for sympathy.  Surgeons don't get the big bucks to cuddle, at least not on the job.  After wrestling on whether or not I liked this guy's vibe, Jesse helped me permanently drop the matter.  He pointed out that the doctor presented himself in a confident and professional manner; he was neither Patch Adams nor was he Leather Face.  Point taken.  Score one for the husband who helped center his high-strung wife. 

Last night sleep kept its abeyance.  Knowing that we had to wake up in five hours did nothing to encourage relaxation.  Miles finally conked out around 11:30 p.m.  Keeping him up a bit later was the plan for he was undergoing an MRI with general anesthesia at 7 a.m.  He couldn't have any food after midnight.  (Amazing that baby formula counts as real food.)  What a frightening prospect, to deny a hungry baby a bottle, but he did great.  Actually, he earned an A+ for hanging out peacefully until 8:30 this morning, on an empty stomach and reduced sleep.  Miles still had plenty of energy to flirt with the nurses and charm the new cardiologist.  I was less perkier than our boy wonder because the MRI unit was running over an hour and  a half behind schedule.  You better believe they saw my best finger drumming and foot tapping.  That additional 90 minutes felt like sitting through a Russian art film; my butt was numb and my mood soured.  I was so thankful that we had no infant hunger hysterics to deal with, though Jesse did get a little fussy without coffee.

But back to last night- while Miles was in a deep slumber, and my heart was picking up speed with each new scary thought that flickered in my head.  I laid in bed, staring at the street lights, the darkened houses, the cloudless sky, and felt utterly alone.  I whispered to Jesse, "I don't know what to do.  I don't know what to feel."  Luckily, he had fallen asleep.  My lack of an audience reduced my dramatics.  What exactly was I obsessing over?  Thoughts of incisions and potential infections, IVs and wires, bright lights and loud alarms.  I feel a bit like Hamlet.  These fruitless, though unavoidable waking nightmares, keep clouding my perspective.  When I look into the future, all I can see are glaring and garish question marks.  No answers.  But unlike Hamlet, I don't think optimism (or better dreams) would lift the claustrophobia that the hospital elicits in me.  We are trapped until further notice; held hostage by a clueless clerical staff.  And our current location is a hectic one.  This particular medical center is like an over-populated bee hive.  All the swirling around does nothing to soothe my nerves.  Worker bees in bright blue scrubs continually dive bomb unsuspecting and lost patients.  Clusters of drones congregate in front of the elevators and reception desks, making it known that this is their territory- buzz off!  The infrastructure is like a never-ending hive, comb after comb.  Is there a Queen Bee I can appeal to for help?  Or is she too busy dictating the flight plans of her minions to help some simple out-of-towners? 

Once I stopped envisioning the hospital as a training ground for evil bees, I was able to fall asleep.  There was one positive event from yesterday.  Our trip eventually yielded some comfort, though not provided by any doctor or nurse.  The surgeon's nurse practitioner, who was friendly, responsive, and eager to provide unwanted surgical details, introduced us to a young man who had a similar procedure done to his heart 14 years ago.  Kevin, now 16 and full of that skater boy swagger, obligingly showed us his chest scar.  Amazingly, it was barely visible under the florescent lights of the examination room.  The scar had changed into a pearly streak, a tiny souvenir from a massive operation.  Kevin's parents, also in the room, said they remembered what it was like "to be in our shoes."  His mother said that Kevin's heart surgery was the scariest thing she has ever experienced.  She genuinely wished us luck, which I greatly accepted.  Granted, Kevin's condition is different and more complex than Miles' case, but he still made it through the surgery in flying colors.  And this was over a decade ago.  I started thinking of how far medical technology has come since then.  Putting that realization together placed me back in the thankful category, where I long to be.  Meeting this young man gave me more reassurance than I have felt in two months.  Thank you Kevin.

Tuesday, July 15, 2008

Who has 2 thumbs and some free time? This chick!



We actually got to cancel an appointment with Miles' cardiologist today.  He didn't need it- the diuretic has made an marked improvement.  Also, the murmur has gotten worse.  Whew, this is a huge relief on many fronts.  Primarily, I've never had the luxury of not needing medical attention for him.  Granted, we are in the eye of the storm, and many more massive (and much scarier) appointments loom ahead.  Our little man is doing well enough for us to fore go the trip to Henrico.  Which leads me to the second point of thankfulness- going to Dr. F would have had us in the car for a total of 3 hours today.  
Tomorrow we are driving to Charlottesville for our first round of appointments and consultations.  That's diaper money we are pouring into that gas tank.  Cha-ching! Oh, I just had a lightning bolt moment.  Some one needs to fashion a car that runs on dirty diapers.  A true utopian dream, transportation that is sustained by diapers.  Hug the earth by running on Huggies!  
Finally, we have many preparations to take care of today.  No extra time is available, so why am I typing about diaper sci-fi right now???  I just drafted Miles' packing list.  I always make packing lists- if I don't make the list, I forget the essentials.  His list is 25+ items long.  My car is not built to hold 25+ items, plus two adults and their luggage.  But back to the gas issue, my car is the vehicle of choice for road trips.  I burn fewer dinosaurs than Jesse's monster-sized ride.  
I better run and get started on the packing spree before Miles wakes up.  All bets are off the moment his little peepers crack open.  My window for errands become extinct, just like those poor little T-Rex's in my gas tank.

Monday, July 14, 2008

The Thomas Family Trio head to Bonnaroo

Anna, Jesse, and Miles penned a one-hit wonder last night.  A record deal is in the works.  The song was a true collaborative effort.  Anna on lead vocals; Jesse was in charge of the lyrics; Miles covered the back-up vocals and dance moves.  It's a true shame that we didn't capture our song for YouTube.  

The song in question- "Old MacDonald (Redux)"  Here is a tiny sample of our work:

Anna:  Old MacDonald had a farm, eieio.  And on his farm he had a. . .
Jesse:  Fake Leg!
Miles: ooooooo (eieio)
Anna: with peg leg here, a peg leg there, here a peg, there a leg, everywhere a peg leg
    Old MacDonald had a farm
Anna & Miles: eieio/oooooooooooooo


And so on for ten minutes.  Let me share some other gems that Jesse contributed.  Apparently, Old MacDonald also had electrical wires, jewelry boxes, pythons, lamps, and smooches on his farm.  Miles loved the silly lyrics, but I think he really enjoyed my facial expressions that followed Jesse's whacked-out suggestions.  We are bring back the family sing-a-long!      

Sunday, July 13, 2008

A Surprise Zebra!



These pictures were taken yesterday.  He is only getting sweeter by the day!

Saturday, July 12, 2008

An improvement & a green movement

Miles' new diuretic medication seems to be making him feel better.  He was much calmer yesterday once it hit his system.  This new drug is reducing his fluid build-up and increasing our diaper usage 10 fold.  Makes me wonder if I can get away with raising a free-range child.  You know, let him cruise around diaper-less in the backyard with the pups.  Just a thought, since I am dropping so much money on Pampers.  I am currently investigating the cloth/reusable diaper route.  I was a clothe diaper kids, as was Jesse.  Needless to say, those diapers of yore have undergone some serious technological advances.  And they seem so stylish, too.  I just have to convince Jesse that using our washing machine for diapers is a good investment.  This is going to be a hard sell- he gets squeamish with this topic.  

Check out gDiapers. They are the front runner of new diaper choices:


Thursday, July 10, 2008

Tick Tock

Looks like life will continue to get harder for a bit longer.  Miles had a check-up with his regular pediatrician today.  Our main concern was his increasing fussiness and almost-to-sprout bottom tooth.  The doc' main concern was different.  Apparently Miles has gained too much weight from last week, almost 11 ounces.  She thinks this is a sign that our little man is storing fluid in his lungs- a nasty side-effect of the heart failure.  The change in behavior could also be linked to cardiac issues.  You can tell he is uncomfortable.  It's hard to get Miles to settle down, and he gets worked up very easily.  These are frightening times.  I sit and obsess over the upcoming operation.  There are so many what-ifs; I am losing breathing room.  We have 15 days to go until the surgery.  8 days until the cardiac MRI.  7 days until we meet with the surgeon.  5 days until we meet with the cardiologist.  18 hours until I am back at the pediatrician's office for another weight check and potential adjustment of the new diuretic medication.  1o seconds until I lean down and kiss my son's forehead.  

Wednesday, July 9, 2008

The mysteries of babies, part 2

Babies are never to be trusted.

Yesterday Miles told me that it was okay for us to skip a few of his naps.  He said he'd rather play with me instead.  At the time I thought this was a lovely suggestion, so thoughtful of him.  However, he played me like a deck of cards.  Miles' ulterior motive was to teach me this very important lesson: Babies are never to be trusted.  I trusted him when he cooed that missing a little sleep won't cause any issues.  Was he being honest with me?  Was my 12 pound ball of love being forthright with his dear sweet mama?  Nope.  Nada.  No dice.  By seven last night, he was so overtired that he cried for 90 minutes straight.  And this cry fest was not a simple parade of tears and whimpers.  He let loose with banshee-worthy screams.  I looked for anger management class for him- or at least a 24 hot line that could talk him down.  Surely those police negotiators could help in this crisis.  Foolish first time parents that we are, Jesse and I ran through every illness that could explain his behavior.  After we extinguished all rational possibilities, like ear aches and sore gums, the light bulb finally turned on- this kid is an infant zombie!  At this point, we just had to ride out the tantrum.  With many songs and back rubs, his fuss train ran out of coal.  Jesse and I had to pull 20 minute alternating shifts.  The question begs, did I learn my lesson?  You better believe it; no more having the baby call the shots.  In fact, today he asked to borrow the phone to make a local call.  I knew not to give in because most of friends live out of state; he's not tricking me into extra charges.  I wonder what he's got up his onesie sleeve now.

Tuesday, July 8, 2008

Computer Camera Fun



Aren't we silly?  Silly like biscuits!

Bottom-lips and Blessings

All's quiet on the Thomas front.  In fact, things are just peachy.  I am nervous to make such a proclamation, but that's the pessimist in me.  (I prefer to call myself a negative psychic- it has a better ring to it.)  Foolish musing like luck still call some of the shots in my brain.  I hate to tempt fate, yet this good news needs to be shared.  Seems like all I post lately are setbacks, disappointments, and fears.  Well, let this news freshen this blog like a pine tree car air freshener!

First at bat is the news that my chromosomes are normal- 46 in all.  Looks like my dream career of being an X-Man has been dashed.  On the plus side, future children are now a possibility- pending Jesse's test results.  We want little man Miles to have at least one sibling.  I loved being pregnant; it has been the only time I have enjoyed my tummy.  In the final months of my pregnancy, I always had one of my hands resting on my belly; letting Miles now I was holding him safely.  Carrying around a little, swirling ball of life was an honor.  Every time Miles would swim around, my soul would soar, as did the spirits of anyone who happened to have their palms on my tummy, too.  Being pregnant and now being a mother has opened my mind to a new world of personal possibilities- I am feeling more compassionate, loving, and centered than I ever have before.  Miles has given me direction and insight.  Being a mother feels like a natural fit.  Five to ten years ago, I never would have thought that motherhood would be something I could enjoy.  At that point, I was anything but maternal.  I now see that being a mommy is not something I simply enjoy, it is truly a role that makes me thrive.  

Secondly, Miles is continuing his amazing pace of development.  Last night, while playing before bath, he smiled at the mirror.  First time ever!  He not only smiled at himself, he grabbed the mirror, pulled it closer, played with his mirror image hands, and even held a conversation with his reflected self.  Jesse and I howled with laughter at how silly Miles was acting with his new found friend.  Mirror Miles and little man Miles really enjoy each others company.  I put a mirror in his crib last night- one of the plastic/fabric sorts that you can tie to the railing.  This morning I found Miles 1 and Miles 2 hanging out, completely engaged with one another, and ignoring the fact that there was a wet diaper with my name on it.  Score one for reflections!  

Next, Miles had his first session with the occupational therapist, Robin, yesterday.  She is an absolute delight- so friendly and tender with Miles.  He, on the other hand, was not initially keen about hanging out with this strange lady who was taking up space in his nursery.  About two weeks ago, Miles started fussing with strangers.  He has latched on to his mommy and daddy.  He also responds well to his grandparents.  However, if you are not on this list, you get ten seconds of a poked out bottom lip, aka the warning signal.  The bottom lip followed by a guttural wail that is only soothed by singing John Lennon songs (a recent discovery).  Robin got the lip, but I didn't snag him immediately.  My mistake- it took 5 minutes just to calm him down since I was too embarrased to sing "Imagine" in front of her.  Truth be known, it makes me feel special when Miles cries for his mommy.  Having him recognize me is an amazing feeling.  Maybe one day when I am feeling blue, I'l just introduce Miles to strangers and wait for that bottom "I want my mommy" lip to emerge.  Then I can swoop in as the hero!  A cheap ploy that will only exist in my imagination, I promise!  Moving on- once little man calmed down, we had an amazing OT session.  Miles eventually warmed up to Robin and showed her all of his accomplishments.  Our new task is to master rolling from his back to his tummy.  We will scaffold the process by starting him on his side- let those muscle groups gain some strength.  

And speaking of strong muscles, Miles can now scoot himself to the end of his crib.  Last night, Jesse found our boy with his blanket bundled legs completely sticking out between the bars at the end of the crib.  Mind you, Miles is accomplishing this feat while fully swaddled.  And this is a professional swaddle- a blanket that is solely made for swaddling.  It has two sets of velcro tabs.  We lovingly call it the baby straight jacket.  Miles calls it his Slip 'n' Slide.  He remains totally inside of the blanket on his crib excursions.  Last night I heard him grunting on the monitor.  Silly me, I thought he was dreaming about filling his diaper.  Instead, Miles was using worm-like wiggling motions to move approximately 2 feet- all while dreaming of treadmills and race tracks.

Finally, I think our week might be rosy due to Sunday's blessing.  We met at my parents house, we Thomas three and both sets of grandparents, for a blessing for Miles' upcoming operation.  The official blessing was done my hometown minister and a seminary student.  Additionally, everybody added a few words.  My contribution was more of an offering of gratefulness.  I shared one of many images I hold for Miles.  To me, he is the Great Magnet.  As the Great Magnet, Miles has brought together our two families and a multitude of friends and support.  He holds us together in these difficult times.  He also repels much of the negativity that  can quickly surface.  Miles is a uniter, a linker, a magnet that helps us remain close and strong.  For those who follow this blog, Miles has worked his magnetic charm on you.  

Monday, July 7, 2008

Thursday, July 3, 2008

My Son, the Flirt

He was born to break hearts. . .Miles has won over every nurse at Dr. G's office. We went for a weight check this morning. The good news is Miles is back on track. Last week he didn't gain enough weight; I responded my super-gluing a bottle to his mouth and shoveling in rice cereal any time he paused for a smile. Seriously, that was scary. But today he gained almost 1/2 a pound. Good news! As for my son's future career as a ladies' man, that's looking like a done deal. When we checked in the front desk, I heard two of the nurses say, "Ohhhh- Miles is here. He's my baby." I don't mind sharing him, but I am not going to share any credit for the birth. I was the one breathing her brains out- where is my medal?? Anyways- these nurses just love him. I can't blame them; he's like a tasty butter biscuit, a sweet silly goose, a baby bumble bee. . .all names I call him. The next phase is to train Miles to parlay his flirting into getting free stuff- just like his daddy. I can't remember the last time Jesse paid for a cup of coffee. And I never get jealous as long as I also get a free cup. Maybe Miles can flirt his way into a new Prius for mommy.

Howdy from Miles

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bvggbv hgddddddddddddddddddddddddddddddddddddddddddddds
vrtfbbbbbbbbbbbbbb byjhvfdg x

Tuesday, July 1, 2008

Chariot of Fur

Tonight at Casa del Thomas. . .

The above pictures feature Miles sitting on Rajah, our senior ranking hound. Raj has gotten crotchety is the past few years and typically doesn't tolerate too much silliness. However, when it comes to Miles, Raj is willing to make an exception. He let Miles on his back for 2 minutes- time enough to find the camera and snap two pictures. Not enough time to change the photo setting to color, hence Raj has faded into the shadows. In honor of Raj's coolness, I am dubbing him a Chariot of Fur. (or should it be Chariot of Fur-er)

Miles and Mommy chillin' on the only leopard sofa in the colonial district. I'm certain we'd get fined if the item in question was spotted from the road. I think that's why I love it so much. It's actually a Thomas family heirloom. Maybe someday Miles will be able to call it his own; that's if I am willing to share.