Moments, New and Old

Well, friends...Christmas is over and so is 2010.

I can't say that this past year has been turbulence free, but I wish to find peace in it.  No regrets, only lessons for the coming moments.

There are some good things I can look back on.  How about healthy children?  Only one bout of sickness in the last year for miss Charlie Lynn when she had croup/bronchitis and it was short lived. At her recent cardiologist appointment, her O2 sat (the amount of oxygen circulating in her blood) was at 100%!  A major milestone in her life.  Another good thing was discovering I did have what it takes to educate my kids.  Homeschooling was always a dream of mine and to have realized it makes me feel wonderful.  I always felt pigeon-holed by the school district and my square pegged children didn't seem to fit too well into their round little classrooms.  I remember that the Doctor who diagnosed Ethan with ASD telling me that his education was the most important thing in his little life and that I could not, no matter what, let him slip through the cracks.   I feel that choosing to educate him at home helped fill in at least 1000 of those cracks.  I am more than a little afraid that he will follow in the footsteps of his dear mother and, realizing what a joke public school can be, create his own cracks to slip through.  All I wish of him (and the other babies) is to follow his mind and his interests into a contented life.

If you know me at all, you know that I read quite a bit.  My husband is quite jealous of my love affair with science fiction and I must admit I would probably give him up if it came down to a choice between him and my Dune novels (But I am assured that if it was between me and his hand planes, I'd be on the first bus out of town).  Anyway, I've been doing a lot of reading lately in articles about congenital heart defects, searching for information relevant to Charlie's defect.  It's kind of a difficult search, as she has no one syndrome or defect, but a bunch of defects that complicate (and even help) each other.   So I can only find information that sort-of applies and I have to keep my mind open to her whole set of defects so that I can visualize what's going on inside of her little chest.

Terel asks me why I put myself through the mental and emotional anguish of reading case after case of articles on the subject, but I can't imagine not doing it.  Just like how I sought information on Autism (and still do), it consumes me.  I feel like I need to know everything about the subjects to understand my children and the role I play in their lives, beyond mother, of course.

One article I read recently brought me to tears while reading it.  It features a woman, Jeni, with Hypoplastic Left Heart Syndrome and is found here.  While it doesn't feature Charlie's defect, HLHS is sort of similar and Charlie will most likely face some of the same challenges that Jeni faces.   It's hard for me to imagine those challenges and how they will affect my pretty little daughter who seems to have such a large spark for life.

At the same time that I am tearfully grateful to read news stories featuring CHD survivors, I feel frustrated because they seem to be all about kids with HLHS.  And then I feel guilty for feeling frustrated.  The HLHS kids need articles published about them as much as any other heart baby.  Awareness for HLHS is also much needed awareness for CHDs in general.  But sometimes I feel lost in the world where parents proclaim their little ones to be 'warriors' against a specific syndrome with a specific name.  I feel guilty for being briefly jealous of these kids' parents for having at least one simple thing in their complex lives.  I realize it's a silly thing to feel and perhaps I am writing it here to show myself that it is a slight thing, a thing to let go of.   But I am hoping the mothers and fathers and others who have experienced the roller coaster of emotion that goes along with having a chronically ill child will understand these feelings and perhaps identify with them.  I know that feeling isolated is, perhaps ironically, a common theme in the lives of those touched by disease, and if nothing else I hope my candidness will help to alleviate another parent's guilt or loneliness for at least a moment or two.

I struggle to find my part in making the world a better place and I hope to find it in helping other families like my own.  Whether it be heart defects, autism, or just helping other young families meet their needs, I would like to fill my new year with kindness, health and peace.  And of course, laughter, friends, and happiness.  There is one more article I'd like to share, one that might bring a little light into the oftentimes dark subject of CHDs and it can be read here.  Let's hope the technology continues to develop and someday the most common birth defect will become the least common.

Let's step into 2011 one moment at a time.

Happy Birthday, Ethan!

Today is a special day for our family.  Nine years ago, on a snowy Christmas Eve morning, Ethan came into our lives.  This time of year has always held a special kind of excitement for us...I'm sure all of you winter babies can relate.   The feeling is palpable by December first and only builds throughout the month.  Right now we are riding the wave forward until tomorrow, when it will finally break and roll back.

Ethan has blessed us with so much.  It has been good to watch him grow with such a sweet sense wonder and a great little sense of humor.

Ethan has always been a happy and thoughtful child.  His big heart holds an infinite amount of love. 

I am looking forward to seeing Ethan's unique personality grow even more in the next year.  I can't believe the time has gone so fast, but I am proud of the little man that the time has shaped.

Mom loves you, Ethan.  Happy Birthday.

Merry Stressmas!

Hello Yule-all.

Today is the Winter Solstice and I would be remiss if I failed to mention the wonderful Lunar Eclipse that took place early this morning.  Of course, in Minnesota it has not stopped snowing for a second in the last few weeks, so the sky has been hidden behind those lovely gray snow clouds that we've all come to love so much.

I've decided to lighten the tone today so consider it an early gift.  My last post was perhaps a bit on the dark side.  Can I cross over?  We'll see.

Overwhelmed by the Christmas season and the amount of little (and big enough to cause headaches) things  that have gone wrong in the last two weeks, I've been getting little sleep.  My doctor seems to have little sympathy and is letting me figure it out on my own, so I've been self medicating with poppies and Sleepytime Extra.  I'd drink wine until I pass out, but alas, alcohol only serves to add to insomnia.

Ethan's Birthday is fast approaching and he has been buzzing with excitement for weeks. We will be taking him to the city tomorrow.  He has requested to go to the Lego Store, where he will be able to purchase (within reason) the Lego set of his choice.  We will then celebrate his birthday with a small group of family and friends.  His birthday isn't until Friday, but getting our friends to come over on Christmas Eve is always difficult.  It is so special to watch his excitement take over during this season.  It truly is a magical time for him,  and this year has been made extra wonderful by the crazy amount of snow we've had recently.

Our good neighbor was nice enough to blow us out since our snowblower isn't in the best of shape this year, and has fallen behind on the list of many to-do projects.  Our driveway is complicated by its length and a curve on a hill, so his help is greatly appreciated.

I have been preparing for the holiday over the last few weeks and trying to deal with the events that have been hindering my progress, which I should come to expect by now.  Unexpected snow and unexpected financial woes.  Nothing too large to handle with the appropriate coping skills.  Never mind the fact that I still am very much learning what these coping skill things are and so my use of them is still kind of unreliable.

Nonetheless, I've managed to order Christmas presents which will hopefully arrive before the holiday, begin holiday baking, and cement some sort of Holiday plan.   After more flip-flopping than has ever happened in Washington, we have decided to stay home to enjoy a more relaxed Christmas Eve & Day.  Ethan had requested traveling to Terel's family Christmas in Iowa, where we could have then stayed and celebrated with my family the following day.  However, it has been confessed that Terel and I were both secretly dreading this plan for oddly similar reasons.  I hope it causes no offense to my family readers that we just can't deal with the stress of being social.  It's been a hard couple years for us, so please, continue to be understanding.   Staying home will also save us a bunch of cash in a time when cash is hard to come by.  We would like to see everyone, but it will have to happen another day.  And for those of you who are able to come, you are always welcome to visit!

I do have one Christmas Wish I'd like to see fulfilled:  Heathrow to resume all flights and send my little brother home so that he doesn't have to spend Christmas alone!  Good Luck Steve!

Although I have been spending sleepless nights re-reading a Brontë sister classic (or three),  I have been also enjoying this winter season more than I have enjoyed the freezing weather of the past.  Perhaps I have caught some of my dear Son's enthusiasm, perhaps I am just becoming resigned to loving Minnesota for what it is.  Either way, I am happy to share this happy season with my children.  Two of them love the outdoors and the snow more than almost anything, and the other, well, he tries.  I'm sure there is a video game with snow in it that he loves.

I hope that everyone out there can take a step back from the mess of expectations for this holiday and treasure the things we already have, or have had in our lives.   I can feel the Force in me draining, so I will stop before I get too far away from the dark side with my happy little holiday hopes.

Much peace and simple joys.

Waiting in Rooms

It's one of those nights where the lights are still on but we're lying in bed, trying to blame the other for not turning them off. We go without words for a long time.  The noises in the house press down on me.  The furnace, the dryer, the occasional mouse.  I can hear the wind outside wresting the leaves from the trees, trying to get across the threshold to chill me.

He has his arm over his face and he's been lying still for so long that I want to shake him.  

Out of the quiet, he says, "You know why they put us in that other waiting room, right?"  

Unsure of his intent, I take my time. I picture the waiting room.  It's large, at least the size of the other one, although without coffee and a sink.  Like the other room, it has a television and a monitor so you can see your child's number change colors, signaling the transitions from Pre-op to In-Op to Recovery.  But unlike the other waiting room, which is filled with parents sitting shoulder to shoulder watching daytime TV, this room is empty.  It's quiet, and the lights are dim, and no one has turned the on TV. 

"Why?"  I say, instead of answering yes or no.  

He's quiet a bit more.  He gets up.  He shuts off the lights.  He bumps into the furniture getting back into bed and when he gets settled his back is to me.  

"Honey?" I say.  

 Barely, he speaks.

"Just in case."

Welcome to The Sideways House

The Sideways House isn't a place, exactly.  While our house certainly seems topsy-turvey most of the time, the name really refers to our state of mind, the way our lives have unfolded and the blessings and burdens we have been given.

Let me start by introducing us.  Me, I'm the mom.  That almost is a given, huh, in this blog-o-sphere. My name is Jess.  I am married to a woodworker by the name of Terel. He has a talent that can shape wood into any form to fit any function.  Our oldest child is Ethan.  He is 9, or will be, on Christmas Eve.  Our middle guy is Joseph and he is six.  Our little one is Charlie, and she (yes, I said 'she') is two.

When Ethan was a small child, he was referred to an early intervention agency for lack of speech.  Four years later that road led us to an Autism Spectrum diagnosis.  Joseph was also referred to the same agency for the same problems, but he has not been diagnosed with anything, although we strongly suspect he is floating around on the spectrum as well.  They are both high-functioning, wonderful kids, and I don't worry about them too much.  They are both homeschooled at the moment, a scenario that has been working quite well for all of us so far.

Our daughter, Charlie, was such a blessing.  After two boys, I wanted a little girl SO bad!  When I was about four months pregnant, I went to see a midwife.  I wanted to have Charlie at home, au naturel, as they say.  The midwife was a wonderful person and I was very happy.  She gave us the option to have an ultrasound, which we took.  I wanted to know the baby's gender so I could start nesting right away.

The ultrasound took almost two hours.  The technician confirmed for us that we were having a girl and I was so happy I cried.  I didn't notice the time passing.  After a while, the tech told us she wanted to get her supervisor to double-check the ultrasound.   Assuming she was just training, I continued to be giddy and blubbery about my baby girl.  Terel gripped my hand and was all smiles.  The supervisor came in and she and the tech both spent quite a while craning their necks around and quietly discussing the images, pointing at the screen with knit brows.  In retrospect, I should have had alarm bells ringing in every part of my mind, but I was just so happy...

The next day, a Saturday, I received two phone calls. Alarm bells finally started clanging.  Loudly. First, my regular doctor called and left a message asking me to call him immediately.  Next, the midwife called and asked us to come to her office right away.  It was an hour drive to her office in St Paul and I felt sicker than all the morning sickness I had ever experienced.  Terel tried to reassure me that everything was fine but I knew it wasn't.  "When is the last time any doctor called you on a Saturday?"  I said.  He had no reply. It was one of the longest car rides of our lives.

Our poor midwife. She was shaking. We sat in her clean, bright office on simple modern chairs as she leaned forward, peering at us sincerely, and gave us this news:  Our baby girl was malformed.  She only had part of her heart.  Her organs were misplaced.  They couldn't see a stomach on the ultrasound.   Most likely, we would not be having a child after all.

Devastation.  It was as if she dropped a bomb in our hearts.  Our midwife apologized as I leaned against Terel and sobbed.  She explained that she was going to refer us to a clinic that specialized in high-risk pregnancies and that we would be in good hands there. We thanked her for her care and her concern, got back in our car and drove home, silently.  I pressed my head against the glass and I remember its cool touch and the warm tears falling into my lap.

We met the Perinatal Physicians within the week and had a level II ultrasound.  They had some different news, better news.  They could see the organs, the stomach.  It was her heart they were concerned with.  It wasn't a whole heart and it turned out to be the organ that was misplaced, not all the others.  They called in a cardiologist, Dr Singh from Children's Hospital in Minneapolis.

He was our beacon of hope.  Dr Singh told us that we would have our baby girl after all, but that she had a heart defect.  She only had half of her heart and it was mirrored, placed backwards and to the right of her chest instead of the left.  The great arteries were transposed.  Some of the vessels were malformed, joining the heart in abnormal places. The good thing was that she had the left half of her heart, the stronger half.  Single ventricle defects weren't curable, he said, but they were fixable.  We can deal with this, he assured us.  She wasn't a transplant candidate because of the way her heart was positioned and formed, but she could undergo a series of surgeries that would help her circulate her blood and keep her body oxygenated.

Charlie was born on March 6, 2008.  She arrived much like any other baby.  She looked perfect, and perfectly normal.  A beautiful, pink baby.  I got to hold her for a brief moment before they whisked her away to the NICU, where she would spend the next week waiting for her first open heart surgery, a procedure called the Damus-Kaye-Stansel and a placement of a Blalock-Taussig shunt.  A month after she was born, we were released and took our baby girl home for the first time.  At the end of June, 2008, she underwent her second surgery in which another Blalock-Taussig shunt was placed.  She had several heart caths, and on September 23, 2009, she had her third surgery.  It was a complicated procedure, a combination between the Bi-directional Glenn, the Fontan, and the Kawashima.  Basically, they were redirecting her blood flow so that she could get oxygenated blood to her whole body.  It was the toughest surgery, with a few complications and a lot of extra fluid, but Charlie is a fighter and several weeks later, we were home and on the mend.

Since then, she has grown into a pretty normal two year old.  We are so lucky to be so blessed with her health.  We remain thankful for everyday we get with her and with our boys.   Her outlook remains bright, with the next few years surgery free.  She will most likely need a pacemaker and perhaps another surgery, to finish out the Fonton procedure. She takes medicine daily to regulate her heart and antibiotics because they never found her spleen.  We have to be careful of infection, but we try to make her life as normal as possible.  She lights up our lives in ways we could have never expected, as children do.  She adores her big brothers, and they adore her.

We are also lucky to have people in our lives to help us through the tough times and to have met so many wonderful people along the way.  We hope to continue to be blessed and to grow our heart family as we all work together to spread awareness of the most common birth defect, congenital heart defects.  1 in 100 children are born with some type of heart defect and many aren't detected until after birth. Some aren't detected until it's too late.  Most of those tragedies are preventable with simple newborn screenings.   As I sit here and watch Charlie dress herself to go out to play in the fresh Minnesota snow, I know that families out there need to know before they are sent home with their new little loves that their child's heart is indeed whole.