Of Omens and Amens

I woke up bright and early on Tuesday, April 12, 2011, to the beginnings of a glorious day.  The sun was rising in a cloudless sky, the birds were singing, the trees were blooming, and my husband and children were smiling.

It was my birthday, and I had big plans.  I was going to sing, and dance, and make little crafts, spread a little mulch, and bake this beautiful cake.  (I recently discovered the recipe for it, here.)

In short, the day of my--I'm proud to say it--35th birthday was going to be mah-velous, darlings, simply mah-velous!

Storytime

Once upon a time, there was a woman who was trying to clean up after dinner, help a child with homework, console another child who was very tired, listen to another child practice the violin, feed the dog, and talk to her sister on the telephone.  All at the same time.

You know, a typical weekday evening for any woman named Mom.

In the midst of all of these other normal, noisy activities, the woman heard her husband calling to her from the second story of their home.  He sounded upset.

The woman rolled her eyes and told her sister she'd have to call her back.  The husband must have run out of washcloths, misplaced his cell phone, found a hole in his favorite t-shirt, or something.

The woman climbed up the stairs, to discover her husband was covered with blood.  An actual emergency!

Plans

I had big plans last week.  Plans that extended into this week.  After all, it was the first full week of 2011.  Not having big plans would be--well, it would practically be un-American not to start a new year with big plans.

So I had big plans.  Plans that involved organization and redecoration and revolutionary discipline tactics and radical lifestyle changes and the implementation of amazing new habits.

2011 was all set to be the year that defined my life.

The Seventh Day of Christmas

I'm in the process of giving you twelve days of laughs at my expense.  Generous, aren't I?  Well, I can afford to be this generous, thanks to all the ridiculous situations I've got myself into over the last 34 years.  Carry on!

Today, I'm going to repeat part of a previous post, because the following embarrassing moments are just too good not to share again.   You can read the full post here, if you'd like.

Two Embarrassing Moments: Doctor's Office Edition

#1.  Lily was our most prenatally photographed baby.  Every time we went to see the perinatologist, they took lots and lots of pictures.  When I was pregnant with the other babies, we'd always made a big deal about letting the siblings come along to an appointment, especially if it was an ultrasound.  We were more cautious about that with Lily, considering the circumstances.  


Then one week, I decided to take all three siblings along with me; the baby had been moving a lot, I wasn't scheduled to have extra tests at that appointment, and it seemed like a good day to let them tag along.  (Ignorance can be soooo bliss.)  Unfortunately, we ended up waiting in the waiting room for over an hour--first time I'd ever had to wait more than 10 minutes at this particular office.  I hadn't brought toys or snacks, since it was supposed to be a "quick" appointment.  We were finally escorted to the exam room, where we waited an additional 30 minutes.  


If you have children, you can imagine how things were at this point.  The children were all over the place....over the table, under the sink, inside the bathroom, outside the bathroom, around the expensive 3-D ultrasound machine.  The classic, never-to-be-forgotten moment of that appointment was when I realized Justone was staring, completely transfixed, at the back of the bathroom door.  


"Mom, what is this?" he asked in a tone of hushed wonder.  


"This" was the very helpful poster demonstrating how to do a monthly self breast exam.   I somehow found the fortitude to explain what a monthly breast exam was to my six year old son and his equally curious sisters.  


Thus, I became the only woman on the planet whose six year old son reminds her to do her monthly breast exam.


#2.  Superkid was just over a year old when she and Justone and I went to see her gastroenterologist.  We had a long wait, which never bodes well for the rest of the appointment.  When the doctor came in, I had several concerns that I needed him to address about Sariah's g-tube feedings, comfort, etc.  I even had a video for him to watch so that he could see a behavior we were concerned about.  It was going to be a long appointment.


Superkid was cranky and tired.   Justone was cranky and bored.  The doctor and his assistant were very patient.  They tried to address my concerns over the ever-increasing din of attention-seeking children.  


Justone proceeded to become cranky and bored and hungry.  He was showing me that he was ready to leave in every way that a four-year-old can.  I wasn't done talking to the doctor.  So Justone grabbed my shirttail, and tugged it as he walked towards the door, whining, "Mom, let's GO!"  


The shirt I was wearing was one of those vintage-western types, with mother-of-pearl snaps up the front.....which quickly and easily popped undone at the first tug.  All of them.  Every stinkin' one of them.  And, since Justone was walking away--the hem of my shirtail in his hand--my shirt walked away with him.  


AAAAAA!  I'm still blushing!  The two doctors blushed, too, stammered unintelligibly, and quickly excused themselves from the room.  


Was it a coincidence that we soon moved across the country?  I think not!

She's With Me

Recently, my friend Heidi introduced me to Collin Raye's song, "She's With Me".  I've been a long-time Collin Raye fan, but hadn't heard this song.  He wrote the song to share his feelings about his sweet little granddaughter, who is featured in the video, below.  I suggest that if you are going to listen and watch, you do so with a box of tissues.  (If you are following through Reader, click here to watch.)

Of course, I couldn't help but think about our Lily as I watched this.  What a beautiful and poignant illustration of what an honor and blessing it is to be the parent (or grandparent, sibling, aunt, uncle, etc.) of an exceptional child.  Though our time on earth with Lily was brief, I am so grateful for the piece of heaven she turned our home into while she was with us.  I'm thankful for the unconditional love that she gave us.  I'm deeply appreciative of the lessons Lily taught us while she was with us, and for the powerful influence her life and her example have had on our family and so many others.

This also calls to mind all of the families who still have their miracle child with them, and continue to struggle every day to meet the needs of those children.  Though frequently rewarding, it is never easy.  Please keep them in your prayers.  If you feel like you can do more than pray, here are some organizations that will accept monetary donations to help children and their families who have special medical needs.  There are many others, but I chose to list the ones that have impacted our family.

Make-a-Wish Foundation

St. Jude's Children's Hospital

Give Kid's the World Village

Despite the teary-eyed post, I wish you much joy as you prepare for Christmas in the coming weeks.  May your celebration of the birth of our Savior bring you closer to Him and to the ones you love!

A Time and a Season

Not long ago, I was at the dentist or some other place where the person I was talking to didn't know me very well.  We'd already discussed that I had three children at three different schools.  Somehow, I said something about sewing, which led the conversations to things I liked to make, and eventually, the person I was talking to said something like, "Wow!  You are amazing!  How do you do it all?"

Like I said, it was someone who doesn't know me very well.  Or else they would know that there is toilet paper all over the floor of my children's bathroom, there is mascara spilled in my bathroom sink, a load and a half of dishes waiting to be done, a mysterious smell coming from my son's bedroom, a kitchen floor that hasn't been mopped for.....a while....., and a freakish spider invasion in the basement rec room.  I don't do it all.  I pretty much do what I have to do and what I want to do, and often ignore the rest. 

Here's the thing.  Along with the blogs that I check on regularly to get ideas for my house, I have another group of blogs that I check on regularly to get or give support to other families finding their way around Holland.  Each day, I find myself viewing the inside of two very different worlds: the shiny, pretty world where children pose in bright, handmade clothes on slipcovered couches and painted chairs, with burlap banners proclaiming the joy of the season behind them, as their mothers pull another batch of their signature cookies from the oven......and the less comfortable world where the children pose with their latest feeding tube or portable heart monitor next to a stack of laundry that needs folding while their mothers try to sound brave about the surgery that is around the corner and the fact that they haven't had a decent night's sleep since they came back from their last hospital stay.  I take notes on things I can replicate in my own home from the shiny world, and I make lists of people to pray for and symptoms to watch for from the other world.  It is a strange dichotomy.

During those times when I struggle with the contrast of those two worlds, I have to remember that there is a time and a season for all things.  I have to trust in a loving Father in Heaven, and have faith that He has a plan for all of His children.  We are each here to learn and to grow and--especially--to experience joy.  How we discover that joy in our lives, despite our individual trials, is up to us.  We don't all experience the same trials nor do we share similar opportunities for personal learning and growth, thank goodness!  Our experiences are going to to be as unique as we are.  The timing of our tests and our blessings and even our miracles are going to be different, too.

A time and a season.   Things can change so quickly.  I found these pictures taken on a family vacation, just before Superkid was diagnosed with her congenital heart defect.

And these, taken a few weeks after Superkid's diagnosis, when we were at Boston Children's Hospital, awaiting an experimental treatment that would hopefully delay open heart surgery. 

I could not have guessed, on the day the first set of pictures was taken, what twists and turns my own personal journey was going to take.  I could not have imagined, then, what it would be like to learn to insert a feeding tube into my baby's nose or what it would be like to select a place to bury my baby.  In the second set of pictures, I was learning to imagine those things, but I couldn't yet envision how my life could ever be "normal" again. 

Is my life normal, yet?  Not really.  Not in the way I thought it would be, when the sun was shining as I dipped my baby's feet in the water.  But it is also different, and better, and more manageable than I imagined it would be when I cried that day in the garden at Boston Children's Hospital. 



Those times and seasons are ever changing, and none of us can ever predict what new experiences will be ours with the next breeze.  For some of us, the tragedy of our day is running out of glue sticks before finishing the wreath we wanted to make, and for others the measure of a successful day is one in which our child didn't have to be admitted to the hospital.  Let's be kind to one another, recognize that we are all doing our best with what we've been given, and support one another as we go through these times and seasons at our own pace.  If an empty glue gun is currently your only concern, then pray for the mother who is wondering how much longer she'll have a baby to hold.  And, if you are just hoping to come home from the hospital today, then know that this, too, shall pass; there will be time to make other memories and maybe even a wreath or two.

May I invite you to rise to the great potential within you. But don’t reach beyond your capacity. Don’t set goals beyond your capacity to achieve. Don’t feel guilty or dwell on thoughts of failure. Don’t compare yourself with others. Do the best you can, and the Lord will provide the rest. Have faith and confidence in Him, and you will see miracles happen in your life and the lives of your loved ones. The virtue of your own life will be a light to those who sit in darkness....Wherever you have been planted on this beautiful but often troubled earth of ours, you can be the one to “succor the weak, lift up the hands which hang down, and strengthen the feeble knees."

-Dieter F. Uchtdorf

In Which the ER Welcomes Us

The school nurse called the other day, just as I was finishing my incredibly long and complex grocery list.  The nurse said Superkid's head was hurting and she couldn't see when she moved her eyes to the left.

WHAT?


That was a new one for our pot of Symptom Soup.  Loss of vision.  And not just new, scary new.

Needless to say, we spent some time at the emergency room, that day.  A lot of time.


And then I spent more time on the phone the next day with our various doctors.  And then we went to see Superkid's opthamologist.  And we'll be going to see a new neurologist, soon.


In the last six years, I've spent a lot of time in ERs and hospital rooms and doctors' offices.  If there is anything I have learned that I can share with you, it is this:


None of the doctors ever, ever look like George Clooney.

EVER.  

But that's okay, because I'll tell you that it doesn't matter what the doctor looks like if he or she can reassure you that your six year old is not having a stroke or suddenly going blind.  (Thank you, Dr. Roberts, opthalmologist extraordinaire!)  Superkid has her peripheral vision back, and we now know that what she experienced is known as a "migraine event."  Not fun, but not permanent blindness, either. 

I'm glad we're home, and I'm glad Superkid is fine.  But we left many, many children behind at the hospital who are not fine and who won't be going home any time soon.  They need your prayers. 

Go here to learn about something else you can do for them, too.

Heart Stories

A fellow CHD mom I really admire, Stefenie, is hosting a special link-in party today, at her blog, When Life Hands You a Broken Heart....Create Hope.  She's inviting other heart moms and families to share their stories with each other.  


I've already written quite a bit about our experiences with congenital heart defects, trips to doctors' offices and hospitals, and the like.  Today, I want to share with you what it was like to receive our initial diagnoses:

We were expecting our third baby, a girl, when I had a life-altering experience.  I remember distinctly, how I stood in the kitchen, loading the dishwasher as the late summer sun streamed in through the window.  I could see my two children playing in the grass outside, and I thought about them as I gathered another stack of plates to rinse.  Remembering the chubby, good-natured babies they had been, I anticipated with pleasure what it would be like to take care of their soon-to-be born sibling.  It was at that exact moment that I received a message, unspoken by any voice, but distinct enough for me to know it wasn't my own thought or imagination.

"This baby will be different."

Startled, I let the plates drop into the sink, and leaned against the kitchen wall.  I could see my children tossing sand out of the sandbox they played in, hear a bird chirping through the open window, and feel my unborn baby kicking....but time seemed to have stopped.  I knew, right then, that "different" didn't mean my baby wouldn't be chubby or good-natured.  Different meant that something was wrong with my baby.  So I asked, "What is wrong with my baby?"

And the answer came.  "That doesn't matter right now."

I sank then, awkwardly, to my knees, and prayed, "Tell me what to do, please show me the way."  And I was given just a few tasks that should be done before my baby was born. 

I spent the next few weeks mourning the loss of "normal" and trying to come to terms with "different."  I cooked and cleaned and organized, just in case I would have to spend more time at the hospital with our new baby.  I shared my experience with my husband, and instead of reassuring me or blaming my fears on hormones, he quietly said, "I know," and we held each other and cried.

She came into the world along with the first snowfall of an early winter, more than four weeks ahead of her due date, and two weeks shy of a scheduled c-section.  As the labor pains started and increased in frequency, I told myself, "It's just that she's going to be early.  That's it, she might be a little smaller than the others, maybe harder to feed."  Despite the reality of my early warnings, I hoped for a less dramatic outcome than the ones I wondered about late at night.

When the doctor pulled out our new baby, my husband and I braced ourselves.  But the sweet baby who was placed in my arms--though a little smaller than her older siblings had been--was perfect.  The prettiest newborn we'd had yet, she curled up into my arms and nursed with little difficulty the first time.  Keeping her in the room with us that first night, my husband and I kept looking at her, marveling at her miniature fingers and sweet rosebud mouth. 

Days and weeks and months passed.  On the surface, there was nothing extraordinarily different about the newest member of the family.  There were small differences in behavior and feeding that I attributed to her being her own little person: she was a little harder to nurse, she took shorter but more frequent naps, she stayed petite and didn't get the rolls and dimples of her older siblings.  But still, I was nagged by the knowledge that something just wasn't right.  At each well-child visit, I would question the doctor about her weight gain, her feeding habits, the funny way she arched her back sometimes....only to be reassured that she was fine. 

Until her nine-month well child visit.  This time, the doctor shook his head as he looked at her chart.  Superkid hadn't gained any weight since her six month check up.  This time, the doctor listened very carefully to Superkid's heart with his stethoscope.  For long minutes, we sat quietly, as he listened.  "I'm not sure if I'm hearing it right, but I think I hear a little murmer, there," the doctor told me at last.  "It's probably nothing, but I like to be cautious with things like this.  Let's have a cardiologist look at her."

Strangely, instead of being alarmed, I felt relieved.  I knew the long wait to find out what was wrong with our baby was almost over.  When we sat down to get the results of the echocardiogram from the pediatric cardiologist, it was like having the curtains opened to bring sunlight into a darkened room.  Did we like the room we saw?  Not particularly, but finally knowing what we were dealing with and being able to get up and move around was better than sitting in the dark.  Mitral valve stenosis, a congenital heart defect, was what made Superkid different.

Things happened very quickly from that point.  We went from having no diagnosis to experiencing symptoms of severe heart failure in less than one month.  Superkid was desperately ill and in need of heart surgery within three months.  We spent most of those three months in the hospital.  The answer to all of the questions you might ask sympathetically--was it awful?  were you terrified?  wasn't that exhausting? --is yes.  It was all those things, and then some.  But it was not surprising, and it was not something we weren't prepared for.

I believe that God recognized that I would need some time to digest and accept the idea that this baby would be different in a way that would challenge our whole family--not just once, but many times and many ways.  I am incredibly grateful for a loving Heavenly Father who gave me, His daughter, a gift of time and preparation.  "Before I formed thee in the belly, I knew thee; and before thou camest forth out of the womb I sanctified thee..." (Jeremiah 1:5). 

Is my experience unique?  Perhaps.  Many of the heart parents I know were caught off guard by their child's diagnosis.  I am convinced, however, that the parents of children with special needs are prepared in some way to take care of their children.  They have something that only they can give, a contribution that only they can give, and that is why God entrusted them with the care of a "different" child. 

To those who are just beginning their own journey into a new world of diagnoses and doctors and hospitals and long nights willing the heart monitor to just keep beeping.....then I offer you these words of encouragement:  Trust yourself, that you have it in you to develop the skills you need to parent this child.  Trust in a loving Heavenly Father, that He has already shaped and prepared your for what is ahead, and that he will answer all your prayers--even the ones you don't know how to say, yet.

If you would like to read about the diagnosis of our second heart baby/fourth child, or find out more about our experiences with Superkid and ongoing medical issues, click on any of the following links.

Maiden Voyage: The First Posting

A Call from the School Nurse 1

A Call from the School Nurse 2

Memories

Love: 400 Extra-ordinary Days

My Trendy New Accessory

Wanna see the fantastic new accessory I acquired just this morning?

It's the latest thing for the woman who's always on the go!

Yep, I am sporting my very own, very stylish arm sling as of this morning.  I slipped while climbing down the small but steep bank of the neighborhood creek, yesterday.  I landed hard on my left arm.  (Talk about tender mercies--it wasn't my right!)  I thought at first that I was going to be okay, but then it started to hurt.  Really, really hurt.  Enough that I almost said words out loud that I normally wouldn't even think.  So, this morning I went to the doctor and came home with a sling.

It's a good thing I've had children, because I've had lots of practice doing things with one hand.  Unfortunately, this kind of puts a damper on all the sewing and painting projects I had lined up for this week.  You know, though, maybe my sling can double as a purse!  Or maybe I can figure out how to make my own slings out of really cute fabric, and then people won't wonder what happened to my arm, they'll just wonder where I got that fabulous, new accessory.

Anyone have any good tips for carrying on as usual with one less arm?

My Latest Remodeling Project

The outside of my nose has served me well over the years.  But the inside....well, let's just say I've had a sinus infection to go along with pretty much every major life event.  First date?  Check.  First leading role on stage?  Check.  Graduation from college?  Check.  Wedding Day?  Check.  Honeymoon?  Check.  Birth of children?  Check, check, check, and check. 

Since my mother, brother, and two sisters have all had to have the inside of their nasal passages surgically repaired, I had some idea that I needed to have the same thing done.  In high school, my mom took me to see an Ear, Nose, and Throat Specialist (ENT) about my recurring sinus infections.  He looked inside my nose and said I was fine.  When we lived in Connecticut, I went to see another ENT about my recurring sinus infections.  Again, he looked inside myn nose and said I was fine. 

This fall, I went to see a third ENT about my recurring sinus infections.  Dr. Gutt didn't just look inside my nose, he did a CT scan.  And then he said I was not fine.  He said that I needed a major sinus remodeling job.  Dr. Gutt promised that his remodeling project would remain true to the existing footprint of my nose, but would really open up the interior spaces.  (Haha!  Can you tell I love to read home improvement magazines?)

This week, Dr. Gutt went in and really knocked some walls down inside my nose.  Thanks to the guided imagery he used during surgery, I now have before and after pictures for my blog! 

Are you ready for this?  If you have a sensitive stomach, you might want to scroll past quickly!

Pretty crazy, huh? 

Surgery went well, and I'm happy to report that the recovery hasn't been nearly as bad as I thought it would be.  I'm really stuffed up right now from the swelling, but that's about it.  I can't wait to see what it feels like to go running with all that room for breathing!  I have to admit, I'm kind of horrified to see the evidence of what I've been putting up with for all these years.  (If you really want to know, what I was putting up with was a deviated septum and hyper-enlarged turbinades.)  The good news is, the outside of my nose looks just like it always has.  Moral of the story:  if you keep having recurring sinus infections, find a good ENT.

Thanks, Dr. Gutt!

Summer in Holland

It's been a long-standing tradition of ours to have several appointments each summer for Superkid with specialists at the children's hospital.  Contrary to what you might think, Justone and Endeavor love to tag along.

Our children's hospital is soooooo good to all the children who enter it's doors.  It's not just the patients who are treated like royalty:  their siblings are always, always offered special prizes and opportunities with every procedure, as well.  I can't tell you how grateful I am that we have hospital that recognizes how difficult one child's health problems can be for an entire family and works hard to provide the entire family with care.  Since Superkid was born, I've spent time at three other children's medical centers; Riley Hospital far surpasses the others in this aspect.  I love this place.

Funny story: a few months ago I promised a friend I would watch her little girls one day.  I had forgotten when I promised that we had an appointment for Superkid up at the hospital that same day.  Since I'm used to having kids tag-along with me to doctors' offices, I decided to just take my extra charges along with us, instead of cancelling either obligation.  They loved it!  They were treated to special toys and prizes and given lots of attention, too.  The three year old asked when she could come again!

I have yet to leave any appointment at the hospital without an armful of stickers, toys, games, and other special prizes.  You will not believe what children are willing to put up with if they know that they can select whatever they want from the prize box when they are finished.  There is a time and a place for bribery, and I'm all for it when you are having any type of medical procedure.  I've been through a few gynecological procedures that would have been much easier to tolerate if I'd known I'd get a prize afterward.  I'm going to suggest to my OB/GYN that he needs to offer more prizes.  (Spa gift certificates would be totally fine.  I wouldn't have a problem with shoes or purses, either.  I'd even settle for chocolate.)

Recently, we made a trip to our children's hospital to see some of Superkid's doctor friends. 

Our cardiologist told us that--unfortunately for him--he won't need to see Superkid for another year.  That is a big deal for a heart kid.  It means Superkid's heart is in good shape, right now.  See you next summer, Dr. Ebenroth!

After reviewing how things had been over the winter (many school absences, four cases of pneumonia, lots of migraines), our metabolic specialist was ready to make a diagnosis.  While he can't pinpoint a specific variety without doing very invasive testing (which we are opting not to do at this time), Dr. Hainline can say that he is 99% positive that Superkid has a mild form of mitochondrial disease, with metabolic and neuromuscular ramifications.

Quite a mouthful, eh?  The very simplified explanation is this:

Mitochondria are like the power plants of the body's cells.  They take fuel and process it so that it becomes the forms of energy our cells need to function properly.  Superkid's mitochondria don't work the way they should.  They have difficulty metabolizing fuel into different forms of energy needed for her cells.  

If you look up mitochondrial disease on the internet, you'll be alarmed.  Remember, Superkid has a mild form.  But knowing that she has a form of mitochondrial disease explains a lot of things, including Superkid's migraines and her "squishy" muscles.  

It also explains why Superkid is such a picky, frequent eater.  Dr. Hainline's team of nutritionists met with us, to help us understand the form of hypoglycemia that Superkid has as a result of the metabolic side of this coin.  (Ketonic Hypoglycemia.)  We don't have to make any significant changes to her diet, just make sure that she has frequent meals.  At home, we've given her a little box of snacks that she can keep by her bed, so that if she wakes up hungry during the night, she has something right there to eat, immediately.  Dr. Hainline is sending a letter to Superkid's school, to let them know they need to follow my instructions for feeding Superkid during the school day. 

We don't know, at this point, what the long-term issues with this diagnosis will be.  At the moment, I'm content just to figure out how too keep Superkid from having ketonic episodes and migraines.  I'm also grateful to be able to know that some of her food issues aren't just personality quirks.  And I feel incredibly justified in knowing that I was right, five years ago, when I tried to convince some of our original (Connecticut) specialists that there had to be something more going on with my baby than a heart condition--I was convinced that something larger was affecting her muscular system.  I hate to be right, in this case, but it just goes to show that mother's intuition is the real deal.  Trust yourself when you receive inspiration about your children.  I can't help but be astonished by the road that led us to these answers:  visits with multiple specialists, several incomplete or wrong diagnoses, even the brief life of our daughter Lily--we may never have met Dr. Hainline had it not been for Lily.

I'm so grateful for the tender mercies of a loving Father in Heaven, who has given me the opportunity to take care of Superkid, until her mission here on earth is complete.  It is always an amazing experience to accompany her on her journey.  And I'm so, so thankful for the wonderful people at Riley Hospital who continue to provide so much care and support for our family.

By the way, my latest giveaway is still open!  Make sure you enter to win a free Picnik subscription.

Giveaway EXTENDED....

A quick note about my first giveaway, which was supposed to end last night at 6 P.M:

I've extended it until 6 P.M. tonight!

Why?  Well, mainly because I had to have general anesthesia yesterday for a little medical procedure, which meant I spent most of the day feeling completely loopy, and that I fell asleep at 6 P.M. instead of randomly selecting a winner.  My apologies!  

The Bionic Man had some stuff at work he couldn't get out of, so my friend Angie was good enough to join me for my little hospital adventure.  She reports that I'm just as talkative coming out of anesthesia as I am when I fully conscious.  Apparently, I asked her, the nurse, the doctor, and anyone else who entered the room all about their summer vacation plans.....several times each.  Thanks for listening, Angie!  I still can't remember where you are going on your summer vacation, but it does appear my subconscious self is taking the summer months very seriously.  A sign that I'm in good mental health--what if I'd been repetitively talking about how much laundry I have to do this week?

Anyway, I'll have some pictures up later today of the cute apron I'm including in the giveaway.  

Adventures with Superkid

If you've recently stumbled upon my blog, you might have come for some of the sewing or craft ideas I've been posting (my goodness, I'm getting full of myself, aren't I?).  It's only been in the last few months that I've had the time, energy, or inclination to do that kind of stuff, and it is fun to share that on my blog.  My blog actually began as an extension of the CarePages I was keeping for my two daughters, Superkid and Lily.  (If you want to know about CarePages, click here.)  Today's post is an update on Superkid and some of her ongoing health challenges.....so no crafts today!  (But I did make that twirly skirt she's wearing.)

Some of you are aware that Superkid was born with a heart defect called mitral valve stenosis.  Her own mitral valve only worked for about a year, by that time it was causing severe enough heart failure that it had to be replaced by an prosthetic (artificial) valve during open heart surgery.  Superkid's new valve puts her at risk for blood clots, so she takes a blood-thinning medication called Coumadin.  (You can read more about that here.)  The other tricky thing about prosthetic valves is that they don't grow.  Superkid's prosthetic valve has to be replaced as her heart outgrows it.  She received her second valve in December, 2008.  It looks like this:

As if that weren't enough of a challenge for one little person, Superkid has had to deal with several others, as well.  

Her heart failure was severe enough prior to her first surgery that she had to have a feeding tube that went directly into her intestines.  We used this at the time of her initial heart surgery to help provide her with additional nutrition and calories that she didn't have the energy to ingest by mouth, both pre and post op.  We used it for several months after surgery to help her get extra calories she needed to catch up.  We also used it for a couple of years following surgery to administer her heart meds, until she could handle taking them by mouth.  All that remains of her feeding tube now is a small, closed hole on her tummy, which Superkid refers to as "my other belly button."  Up until last year, Superkid was followed by a gastroenterologist for issues related to the feeding tube and what was thought to be reflux.  (Turns out what everyone thought was reflux was actually discomfort that seems to stem from pressure changes in her heart and fluid issues.)

A few months after her first heart surgery, we started to notice that Superkid's eyes didn't always track together.  This was diagnosed as an eye-muscle disorder called intermittent exotropia.  Corrective lenses helped a little bit, but the only permanent solution for this problem is--you guessed it--surgery.  Taking a blood thinner makes even the most minor surgeries very complex, so Superkid's eye surgery in June of 2009 put us in the hospital for a good two weeks--longer than her open heart surgery six months prior.  To give you some perspective, the eye surgery that she had is normally an outpatient procedure.  We continue to see a pediatric opthamologist to monitor Superkid's eye muscles and vision.

And then there are the migraines.  Superkid gets migraines.  Severe headache can be a sign of a blood clot or hemmorrhage in the brain--two things that Superkid is at risk for.  She's had a litany of tests (from CT scans to sleep studies) with the conclusion being that Superkid gets migraines for no obvious reason.  They are awful for here, but fortunately they don't last more than four hours (so far).  We are getting better at determining what triggers them: chocolate, excessive juice, sugar, late nights, etc.  She only gets them in the morning, so at least they are predictable that way.  So, we started to work with a neurologist on those.  

Pneumonia is another issue.  If Sariah gets a cold, it more than likely turns into pneumonia.  I've become pretty reliable at knowing when the pneumonia is starting: sometimes I can catch it before there is even much indication of it in a chest x-ray.  She's never had to be hospitalized for pneumonia, although it has sent us to the ER a couple of times.  Anitibiotics and breathing treatments always clear it right up.  It's just that she gets it sooooo often: three times between the first day of school and the first of December, this last year.  This year, her pediatrician turned us over to a pulmonologist.  Everything that was easy to diagnose was ruled out: her pneumonia isn't caused by heart failure, lung damage, asthma, or any obvious immune disorders.  Our pediatric pulmonologist, at a loss for any easy explanation, is sending us on to a pediatric allergist, to see if undiagnosed allergies could be the cause of her frequent pneumonia.

In case you are having trouble keeping track of everyone, here is a list of all the medical specialties we've covered, so far:

Cardiology

Cardiothoracic Surgery

Pulmonology

Neurology

Gastroenterology

Allergy

Opthamology

Infectious Disease (did I mention that Superkid is MRSA positive?)

Nutrition (went with the feeding issues early on)

Anesthesiology

Radiology (for all our xrays and assorted other procedures)

and we're about to add

Psychology

and Child Development

because Superkid just isn't picking up reading the way I hoped she would.  The motivation and desire are there,  but Superkid's frustration is increasing exponentially as we near the end of kindergarten.  When she asked me one day, after a particularly difficult reading homework assignment, "Do the letters jump around on the page for every reader, or just me?" I could tell that it was time to get some extra help.  I've read about studies that show children who have been on heart/lung bypass have an increased rate of learning disorders, so we're going to have some educational testing done.  Whether or not they make a diagnosis, I'm hopeful that through the testing we'll get some tips for helping Superkid learn to read in a way that works for her and her unique learning style.

The other specialty that follows Superkid is 

genetics and metabolism.  

Ever since Superkids was little, and we were dealing with new diagnoses of eye muscles and reflux, I've been asking our doctors, "Is there something else going on?"  I was always told that this was typical for heart kids; many children with CHDs have accompanying other issues that most doctors blame on their hearts.  After all, inadequate blood flow or poor nutrition due to heart failure can cause so many other things to go wrong.  

When our daughter Lily was alive, she had a lot of feeding and digestive issues.  A very bright, caring third year resident was determined to find a way to improve Lily's digestion, so she called on the metabolic expert at our children's hospital, Dr. Brian Hainline, MD, PhD.  He special interests are Inborn metabolism errors, molecular genetics of fatty acid metabolism.   I've been told that Dr. Hainline is one of only about five experts in this particular area of medicine within the United States.  Don't ask me what any of that means; I already feel like I have to get a degree in Chemistry just to be able to converse with him.  Since our first meeting with Dr. Hainline, I've decided that he is one of the most caring, engaged physicians we've ever encountered--in his own, unique way.  Dr. Hainline was able to answer a lot of the questions that we had about Lily.  The answers weren't easy to get, but the knowledge made us better able to care for and comfort her during the remainder of her time with us.  

Dr. Hainline also told me that he'd like to meet Superkid.  He was the first doctor to agree with me that Superkid's various medical issues might not be heart related.  In fact, he believes that many of the children who have CHDs and accompanying health issues aren't necessarily correctly diagnosed: he believes many of them have overriding syndromes that caused their CHDs and the other problems, rather than blaming the CHD for everything.  The problem with this radical concept is that science has yet to discover most of those syndromes.  Dr. Hainline had been able to determine that Lily had some type of metabolic disorder but had not been able to pinpoint which one prior to her death.  He has been working with Superkid to discover if many of her health issues are a result of a metabolic or neuro/muscular disorder.  

We don't have any answers, yet.  Initial tests have been inconclusive.  After our last appointment with him, in December, Dr. Hainline said that he'd like to review how Superkid handled the winter.  Would she miss a lot of school?  (20 absences and 6 tardies, so far, due to illness.)  Would she continue to have pneumonia and migraines? (Yes.)  Would she have a growth spurt?  (Not a spurt, exactly.)  How would she do at school?  (Not as well as we hoped.)  These are the things he'll be reviewing as Dr. Hainline considers our next course of action.  And this will take some considering.  If Dr. Hainline feels that additional testing is needed to make a concrete diagnosis, that testing could get pretty invasive.  We're talking muscle biopsy in a patient on blood thinners.  Not fun.  Painful.  And it is doubtful whether or not an official diagnosis would be helpful.  Treatment for many metabolic disorders is somewhat behind the scientific community's ability to diagnose them.  It's a relatively new field of study.

So, that's where we're at: between a rock and a hard place.

It brings our list of specialists we've met up to 14.  Looking on the bright side, Superkid hasn't had to be treated by anyone in 

Dermatology

Endocrinology

Oncology

Nephrology

Orthopedics

Otolaryngology

Plastic Surgery

Rheumatology

or Urology.

Am I the only one who is disturbed that our list of specialists we've met is longer than our list of specialists we haven't met?  I'm afraid that I've reached a level of experience at which I am obligated to go back and get a nursing degree.  Seriously.

Well, if you've read this far, it's probably only because you are related to me or because you can relate due to your own ongoing medical challenges.  I have to tell you that the reason Superkid continues to consider all her doctor's appointments to be social calls and the reason I'm not yet completely insane is because we have such an amazing children's medical center.  It is staffed by some of the most caring, sensitive, all-around nice doctors, nurses, techs, and staff.  Yes, we've met a few people along the way who didn't make our list of faves, but they've been few and far between.  As homesick as I get for the mountains, I don't know how I'll ever be able to leave these wonderful people who have given our entire family such stellar care.  If anyone reading this needs a recommendation for any of the specialists we've seen and lives in the Midwest (or is motivated to travel to get care from one of them) feel free to leave a comment with your email address.

Love: Bucketfuls

Buckets can be a mom's best friend.

I like to keep a couple of clean buckets on hand.

Buckets are very useful when I have a child (or two) with the stomach flu.  Skip this next part if you aren't a mom or do not care to read about gross stuff.  I make the person with stomach flu carry the bucket around everywhere they go.  If they want to sleep comfortably in their bed--as opposed to curled up on the bathroom floor next to the toilet--they can, and the bucket is a handy nearby receptacle.  If it needs to be dumped out, I just flush it down the toilet, rinse it in the tub, and spray all things mentioned down with bleach spray.  Very easy.  Children seem to be able to vomit into a bucket with better aim than they can a toilet.  Trust me on this one.

You probably do the same thing at your house....so this is old news.  But I'm telling you about it anyway because every so often I come across a fellow mom who wasn't taught about buckets.  

There's only one reason I would gross you out like this today.  

We are on Day Three of the Yucky Stomach Flu (what a lyrical statement!) at our house.

It hit Superkid hard and fast on Monday, and she's still not 100% better.  Or even 75%.  

Stomach flu causes some havoc with coumadin and INR levels.  So does everything else in the world, but stomach flu is particularly hard on the INR.  Probably because it messes with electrolytes and metabolism.  Darn germs.

 

One down, four to go.  You know it is only a matter of time before the rest of us have it.

I'm guessing that it will hit me today, because I have a huge list of things to do.

1.  Go to the church and decorate the gym for tonight's Cub Scout Blue and Gold Banquet.

2.  Go to the store and buy cake mix and other assorted items I need to fulfill other assignments for the Blue and Gold Banquet.

3.  Make 5 dozen blue and gold cupcakes.

4.  Frost 5 dozen blue and gold cupcakes.

5.  Organize games for the Blue and Gold Banquet.

6.  Take children to piano lessons and basketball practice.

7.  Get my family to the Blue and Gold Banquet on time.

8.  Do the stuff I'm supposed to do at the Blue and Gold Banquet.

9.  Climb my mountain of laundry, put a flag on top, and try to finish washing it.

10.  Wait until midnight to have stomach flu.

By the way, did I mention that I'm the new Cub Scout den leader?  (I'm stoked about it, seriously.  I think Cub Scouts are awesome, and I'm so excited to plan activities.)

It is going to be a crazy day.  Wish me luck!

Friday Funnies....and Not So Funnies

Part of our life in this place I call Holland is that we spend a fair amount of time at doctors' offices.  We go through some periods where we have many, and occasionally we have been known to go as long as eight weeks without a trip to see a doctor, or spend time at a hospital.  There are a few offices where all I have to do is say, "Hi, this is...." and the person on the other line will say, "Can you be here by 3?"

Actually, that is kind of an exageration.  Kind of.  But, between Superkid's ongoing medical issues and the others we faced while Li'l Angel was with us, I have logged quite a bit of time at various hospitals and outpatient clinics and offices--as have all my children, since they often tag along.  If there were frequent flyer miles for such a thing, we would be in Hawaii right now.

As you can imagine, these appointments can be very stressful.  Another mother of a child with special medical needs, Shawni (of Life), reminded me in this recent post that I'm not the only mother who has ever come home from a doctor's office with a few more gray hairs.

So, for the sake of posterity, and to let other MedicalMiles Moms (haha!  Get it?  Like SkyMiles!  I should market this!) know they are not alone, I present you with my own Top 3 Medical Misadventures: Office Edition.

1.  Superkid was just over a year old when she and Justone and I went to see her gastroenterologist.  We had a long wait.  When the doctor came in, I had several concerns that I needed him to address about Sariah's g-tube feedings, comfort, etc.  I even had a video for him to watch so that he could see a behavior we were concerned about.  Superkid was cranky and tired.   Justone was cranky and bored.  The doctor and his assistant were very patient.  Justone became cranky and bored and hungry.  He was showing me that he was ready to leave in every way that a four-year-old can.  I wasn't done talking to the doctor.  So Justone grabbed my shirttail, and tugged it as he walked towards the door, whining, "Mom, let's GO!"  The shirt I was wearing was one of those vintage-western types, with mother-or-pearl snaps up the front.....which popped undone.  All of them.  And, since Justone was walking away--the hem of my shirtail in his hand--my shirt walked away with him.  AAAAAA!  I'm still blushing!  The two doctors blushed, too, stammered unintelligibly, and quickly excused themselves from the room.  Was it a coincidence that we soon moved across the country?  I think not!

2.  Li'l Angel was our most prenatally photographed baby.  Every time we went to see the perinatologist, they took lots and lots of pictures.  When I was pregnant with the other babies, we'd always made a big deal about letting the siblings come along to an appointment, especially if it was an ultrasound.  We were more cautious about that with Li'l Angel, considering the circumstances.  Then one week, I decided to take all three siblings along with me; the baby had been moving a lot, I wasn't scheduled to have extra tests at that appointment, and it seemed like a good day to let them tag along.  (Ignorance can be soooo bliss.)  Well, we ended up waiting in the waiting room for over an hour--first time I'd ever had to wait more than 10 minutes at this particular office.  I hadn't brought toys or snacks, since it was supposed to be a "quick" appointment.  We were finally escorted to the exam room, where we waited an additional 30 minutes.  If you have children, you can imagine how things were at this point.  The children were all over the place....over the table, under the sink, inside the bathroom, outside the bathroom, around the expensive 3-D ultrasound machine.  The classic, never-to-be-forgotten moment of that appointment was when I realized Justone was staring, completely transfixed, at the back of the bathroom door.  "Mom, what is this?" he asked in a tone of hushed wonder.  "This" was the very helpful poster demonstrating how to do a monthly self breast exam.   I somehow found the fortitude to explain what a monthly breast exam was to my six year old son and his equally curious sisters.  Thus, I became the only woman on the planet whose young children remind her to do her monthly breast exam.

4.  We lived in Connecticut when Endeavor went to kindergarten.  I took her in to see the pediatrician for a well-child visit before school started that fall.  She'd had her vaccinations the year before, so I'd told her she wouldn't be having any shots that day.  I hadn't realized that the state required all school-aged children to have a blood screening for lead and anemia, which involved a finger prick.  Endeavor was not pleased when she was informed of this during the exam.  I did my best to help the nurse hold her still so that she could get the single drop of blood required for the screening.  As I did so, I had to wonder who the child in my arms was, and what she'd done with Endeavor--it had just been a year before when Endeavor chatted calmly with the doctor and nurse as they injected vaccines.  The nurse captured the sample, put a tiny, prick-sized bandage on Endeavor's finger, and exited the room.  At that point, Endeavor went from being merely upset about the pricking to being absolutely hysteric.  Suddenly, she was jumping up and down, waving her arms in the air, shrieking as if she'd just been the victim of a stabbing.  With each wave of her pricked finger, blood flew across the room, spattering the walls, the exam table, my white t-shirt, the nurse who opened the door to make sure no one was being murdered.......all of that blood coming from the very tiny prick on Endeavor's finger.  Seeing her blood all over the room only increased Endeavor's hysteria.  It took the efforts of both myself and two nurses to hold her down and firmly instruct her that the only way her finger would stop bleeding was if she would calm down.  I'm exhausted just writing about it!

Ahhh, the memories!  There are so many others, but those were the three that came to mind, first.  Best wishes to others who are logging their own MedicalMiles and making memories to laugh--or cringe--about for years to come.  Just remember, laughter really is the best medicine!

Superkid's Favorite Songs

So, in my last post I mentioned my former life as a theater geek.  And my present life as choir director.  It should come as no surprise to you that my favorite kind of music is.......

Anything I can sing along with that doesn't contain naughty words.  (I hate it when someone ruins a perfectly good song by throwing in a naughty word.  Hate it.) 

If you are planning to give me a CD for Christmas, your options are WIDE open.  Lots of country music fits into my favorite genre (love to belt it out with Reba, Martina, and Carrie), ABBA's Greatest Hits are all very singable, thanks Bionic Man for introducing me to Coldplay and Viva La Vida, and I can't complete this list without mentioning a little ditty known as Handel's Messiah.  See?  I'm musically very well rounded. 

I have passed this trait onto my children.  We appreciate a good mini-van sing-along.  (Although Endeavor appreciates it more when I keep the windows rolled up.   Ten year olds embarrass so easily.)  Superkid especially loves to sing loudly along with any song she hears that even mildly appeals to her.  Unlike her older sister, Superkid does not embarrass easily, which is why I've had the opportunity to push a shopping cart through a grocery store to the musical accompaniment of four-year-old Superkid singing "We Will Rock You."  It is also why each and every time we walk outside and feel a few raindrops, Superkid bursts into a joyful rendition of "Singin' in the Rain."  She's taught it to her entire kindergarten class.  They all sing it on rainy days as they wait outside at parent-pickup.  I'm not kidding!

I appreciate Superkids ability to sing in the rain, literally and figuratively.  Being able to sing in the rain is the ultimate glass-half-full attitude.  "Come what may and love it."  The heavens open and pour upon your head and you dance in the deluge.  That's Superkid.

Yesterday we had appointments at our local children's hospital.  Superkid was seeing her metabolic specialist and was getting an echocardiogram.  The echo was ordered mostly to soothe the nerves of her slightly-paranoid mother and extremely supportive pediatrician.  Paranoid as I am, I really didn't think they would find anything to be concerned about.  Which was why I was a little surprised when Dr. E, Superkid's cardiologist, came to find us as we waited for the metabolic appointment.  There was a bit of an arrhythmia that showed up during the echo, and Dr. E thought Superkid should wear a recording monitor for 24 hours so they could investigate that arrhythmia a little further. 

More rain.

I haven't done arrhythmia before.  This is a new one for me.  It might turn out to be nothing, but I hate wondering.

After the metabolic appointment, in which we heard some good news, some bad news, and not much news that shed light on anything, we went back to diagnostic cardiology to get the monitor.  Superkid chatted away with the technician as she hooked her up.  Soon we were out the door with a portable recording device that will track Superkid's every heartbeat for the next 24 hours.

It was such a little thing, but as I walked to the parking garage with Superkid, now carrying her monitor over one shoulder like it was a purse, I felt like crying.  Six year olds shouldn't have to worry about how they are going to play at recess while they wear a heart monitor.

It's really coming down out there.

Superkid skipped alongside me, as I blinked rapidly and clenched my jaw.  "I was afraid this monitor would be like the one after heart surgery," Superkid informed me.  "I thought it might be too heavy to carry.  But this monitor is very nice!  It is very small, and I can put it in my pocket!"  I nodded.  "I love this place!"  Superkid said fondly, throwing her arms wide, as if to hug the hospital building.  "Lots of people know me here and they all noticed that I had grown bigger!  And they have toys for me when I come.  And Dr. E is my favorite doctor and he loves me back.  I wish all kids had a hospital like my hospital because kids need hospitals that make them better when they are sick and that have people in them that like kids.  Isn't this the best place, Mommy?"

She's singing in the rain.

Last night, when I called my parents to give them our hospital report, my mother reminded me that it was exactly one year ago when Superkid was in surgery, getting her new heart valve.  That helped put things into perspective.  We are so blessed.  I am so grateful that Superkid just keeps trying and never forgets that it might be raining, but she can still sing.

Someone gave us a Josh Groban CD last year.  I know not everyone appreciates Josh Groban, but Superkid does.  This is her favorite song.  She told me, after listening to it a few times, that she's pretty sure it is a song for kids who need heart surgery.  "You can hear the heart monitor," she explained to me once.  True: when you play this song on your car stereo and crank up the bass a bit, there is this steady, underlying beat.  Kind of hard to hear in this YouTube version, but listen anyway in honor of Superkid and all the other kids out there who are singing--and dancing--in their own rainstorms.

Wow! I'm flattered.

I was nominated for a blogging award today.  Since I'm still pretty new at blogging, I'm not sure exactly what this entails, so I'm just going to follow the instructions.

Thank you, Stefenie of When Life Hands You a Broken Heart, who nominated me for the Hearfelt Blogger Award.  Stefenie is the mother of two little boys, one of them with a congenital heart defect.  I'm so impressed by Stefenie's efforts to take the challenges she has been given and use them to bless others. She has created the organization Cuddles from the Heart, an organization devoted to "making life better for children during their hospital stays by donating comforting blankets with an open heart."  I love that idea, since our family has been so grateful for the blankets that were given to our girls during many of their hospital stays.  They continue to be some of our favorites.  Way to go, Stefenie!

Okay, so the instructions tell me I should nominate up to nine other blogs and pass along the blogging love.  Which I have been meaning to do....but every time I go to nominate someone, I discover they've already been nominated by someone else!  Soooo.....it may take me a few more days to drum up some fresh, new nominees!

In the meantime, I just want to warn you that I'm going to take a few days off of blogging while I cook, clean, and entertain the troops for Thanksgiving.  Um, that made it sound like I'm going off to entertain soldiers with the USO.  I didn't mean "troops" literally.  I just meant that we'll have a lot of people eating at our house.  I'm so excited!

Of course, since it is a holiday and people are coming over, tradition dictates that I must also have some kind of medical emergency.  I've been trying to circumvent that by getting xrays and labwork done for Superkid ahead of time.  Really, she just hasn't looked right for the last few days.  She has no other symptoms except that she seems more tired than usual.  That could mean trouble, but so far all tests have come up showing....nothing.  So we're going in for an echo after Thanksgiving, and we already had an appointment scheduled with her metabolic specialist for next week.  I just know something is up.  I could be paranoid, but I absolutely should be, based on our track record with these things.  So it is great that our pediatrician and cardiologist totally jump onto the train with me when I say, "Something just isn't right."  Bless them, they are the best. 

Happy Thanksgiving, Everyone!