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.