Monday, September 20, 2010

When bad news hits twice

Around this time last week, we discovered that our 2-year-old daughter had an undiagnosed PDA (Patent Ductus Arteriosus). Not a particularly alarming congenital heart defect, but after losing our son in June to TOF (Tetralogy of Fallot), I was beside myself with worry and concern for Sadie.

Sawyer in the NICU

When we revisited Comer Children's Hospital to meet with Sawyer's neonatologist after he passed away, one thing she said to me had stuck out among all the medical terms and tears. She suggested that it wouldn't be a bad idea to get Sadie's heart checked out, as congenital heart defects tend to group themselves in families.

Shortly after Sadie's birth, she began to have her share of troubles too. In the NICU for a few weeks and on a ventilator - she fought very hard and made huge strides every day. But,one thing I never thought twice about was her heart. We were told she had a murmur and that most babies outgrow them and that they are most often "innocent."

Sadie in the NICU

When the cardiologist began listening to her heart last week, I was taken by surprise when she mentioned the murmur again. Her pediatrician hadn't said one word about it at any visit we've had in over two years.

As the appointment continued, Sadie had an EKG and finally, an echocardiogram.

Sadie was a trooper and was sitting in her pull-up on the exam table, coloring while the cardiologist informed me that she indeed had a PDA and narrowing of her pulmonary artery (Pulmonary Stenosis). Thankfully, her PDA doesn't need to be repaired surgically at this juncture in her life. She will continue to be monitored each year for changes and eventually it will be repaired.

I never would have thought twice about Sadie's heart if it wasn't for the suggestion from Sawyer's doctor.

According to the American Heart Association, "the risk of having a child with congenital heart disease is higher if a parent or a sibling has a congenital heart defect."

Most parents of heart babies struggle to come to terms with the often scary diagnosis of their infant or small child. And often, other siblings can be overlooked in the craziness that is the life of a CHD family. As mothers and fathers, we have instinct for a reason and I've talked with so many parents who question whether or not their other children should be seen by a cardiologist. No one wants to hear bad news twice, but we also want to do what is the best for our little ones.

In sharing our story, I hope this helps one family that may be struggling to make that difficult choice an easy one.

Wednesday, September 15, 2010

We are now a "2 in 100" family

For those outside the loop, the term "1 in 100" refers to the alarming rate of congenital heart defects among children. 1 in 100 babies are born every day with a CHD. And now, we are a 2 in 100 family.

Yesterday, Sadie was taken to the cardiologist after suggestion from Sawyer's neonatologist from the University of Chicago. We were told that CHD's tend to group themselves in families (sometimes) and that it might not be a bad idea to get Sadie's heart checked out.

When she was 6 weeks old, she was diagnosed with a heart murmur, but we had it checked out and were told it was an "innocent murmur." Apparently, if it persisted we were supposed to follow up. The message was never received on this end. Which infuriates me.

Long story short, Sadie still has a murmur and after an EKG and ECHO of her heart she was diagnosed with a PDA (patent ductus arteriosus) and Pulmonary Stenosis (a narrowing of the pulmonary artery).

Tomorrow we see a pediatric cardiologist at Christ Hospital in Oak Lawn and from there, schedule her surgery to fix the PDA.

At this point, I'm thanking God that this is a very fixable situation. At the same time, as a mother, I can only wonder "why my babies?" I know Sadie's little brother is looking out for her though. Because if Sawyer was never in our lives, we would never know about Sadie's heart.

CHD statistics are alarming and many do not realize that research for CHD's is one of the most underfunded. More children and infants die every day from a CHD than from all childhood cancers combined. Those are numbers that you can't argue with. And numbers that prove we have a lot of work to do, and a long way to go.

Thursday, September 9, 2010

I have joined the "Fight for Preemies"

My son was born on June 1, 2010. Exactly 12 weeks before his August 24 due date.

Because of his prematurity, my beautiful Sawyer was unable to even have a chance to fight the congenital heart defect that was diagnosed shortly after his birth.

Did you know that congenital heart defect research is one of the most underfunded? Did you know that more infants and children die each year from a congenital heart defect than from all forms of childhood cancer combined?

It is amazing to me and a testament to his will that Sawyer survived long enough for his father and me to hold him and say goodbye. He fought harder than any of us could have imagined, especially given his diagnosis of a severe form of Tetralogy of Fallot.

At my 20-week ultrasound, Sawyer was positioned in such a way that the ultrasound technician was unable to get any scans of his heart, abdomen, kidneys and bladder. We were scheduled to come back at 24 weeks to complete these scans. Nothing was out of the ordinary and we were thrilled to be welcoming our first son.

During the ultrasound scan at 24-weeks, the technician simply said "Oh, are you here because of the low fluid?"

I shot straight up and asked what she was talking about, and she ignored my questions as she went on to complete the ultrasound. We then had to wait nearly an hour to see the doctor. That was one of the longest hours of my life, as I was so worried and concerned about our little Sawyer. Would he be okay? What does low fluid mean for all of us?

My doctor, an excellent MFM out of the University of Chicago, immediately informed me that I would need to go on bedrest and I received steroid injections to mature Sawyer's underdeveloped lungs in case I went into labor too soon.

Four weeks after that, on June 1, my water broke early in the morning at 4 a.m. By 4 p.m. that same afternoon, I started to bleed heavily as my placenta started to detach.

I had an emergency c-section that I was not awake for. I thank God for that turn in events every day, because when Sawyer was born he was limp, gray. He had no heartbeat. His premature body had no idea that labor was in progress and his body failed to complete many important tasks that babies do naturally before being born.

Not even two days later, on a beautiful, late-spring morning - Sawyer died in my arms. His heart slowed over the course of an hour and he continued to fight. He struggled to breathe and even let out a tiny coo for me to hear.

Before his death, the NICU counselor presented us with important information from the March of Dimes. I wish I was able to put that NICU information to better use, but unfortunately, our time with Sawyer was brief. In the weeks following his death the March of Dimes sent us a bereavement packet - and I want to take the time right now to thank them.

Sawyer's story is just one of thousands that prove how important it is to continue to support this organization. The March of Dimes currently funds research for congenital heart defects and premature birth. Sawyer died because of a broken heart, and every single day I wish that my own broken heart would take me home to my baby. Some day, all babies will be born healthy - but it is up to us to make that happen.

Monday, September 6, 2010

Meant to be

We're on our annual family vacation in the Wisconsin Dells for the long weekend. This was our trip, originally scheduled for June (thinking back, we made this trip for June, thinking about how far away August's due date would be) but had to reschedule - so here we are.

It's been fun to take Sadie to all the places we went to as kids - the Ducks, Tommy Bartlett's Exploratory, Pizza Pub, mini-golf, waterparks.

There have been many sad moments. Everywhere we've gone, I've thought of Sawyer. As Sadie bravely traversed giant waterslides, I couldn't help but think that I should be sitting with the moms feeding and cradling their tiny babies. But, I'm not. And I stare at them, wondering if they realize - wondering if they can see the pain and know my story just by looking at my face.

Today, we took Sadie to the Dells Mining Company. It's a cute little attraction where you "pan" for crystals, gems and other rocks. Whatever you find, you keep and if you happen upon a special stone, they can polish and cut it for you and ship it back home in about six weeks.

We got busy and found lots of big and small gems. Ruby, saphire, emerald - we found them all - and my birth stone and Sawyer's - a beautiful pink little crystal.

I wasn't planning on purchasing a stone, let alone getting it set and buying a necklace - but when I saw it, I wanted it.

The woman who was showing us all the stones and carefully describing each gem to us one at a time asked "Who is the June birthstone for?"

I told her it was for our son who passed away. Our beautiful Sawyer.

She looked up, with tears in her eyes and said, "My son died four years ago. Today."

The tears in my eyes couldn't stay put any longer and started streaming down my face and hers. We held each other's hands, as we shared this bittersweet, common bond.

I don't think these encounters are coincidences, but moments that were meant to be. I'm sure her heart was heavy with her child's memory all day long - as was mine - and we finally had a chance to both speak about it, something she said was the only thing that has helped.

I will keep talking as long as people are willing to listen. I want everyone to know what happened to Sawyer. I want everyone to know about congenital heart defects and how they take more lives each year than all childhood cancers combined. I want everyone to know that I gave birth to my son, prematurely at 28 short weeks. And most of all, I want everyone to know that my love for him will live on as long as I can share his story, and hope that his spirit brings hope to those who have lost sight of what's important in life.

Wednesday, September 1, 2010

September 1st, 2010 - Three months

How did three months go by so fast, and at the same time, so agonizingly slow?

Summer is a time when life is thriving and all we've had have been dark clouds floating over our heads. A tiny flame blown out too soon.

First, we learned it was okay to smile and then to laugh. We've been able to appreciate the miracle that is Sadie more and more as each day has passed.

We learned that there is no such thing as closure and that hanging white sheets over a bassinet and crib do not erase the events that led us to today.

We know that grief is out of our hands. It comes in waves and drags back out to sea our tears and pain like grains of sand.

I've had to watch my daughter slowly come to realize that her brother isn't coming home. I've comforted her in the night, when she wakes up in tears asking for her beloved Sawyer.

I have watched my husband stand so strong, going back to work so soon after - only to have the grief sneak up and rest itself on his broad shoulders. I have comforted him when I hear his quiet weeping coming from our bedroom in the darkness of night.

With the bad, surprisingly, comes the good.

Every day we hear a friend tell us of a butterfly or a rainbow, a hawk soaring in the sky or a beautiful sunset and how the moment spoke to them - Sawyer's spirit is everywhere.

I have discovered new friendships that will never die. Women with who I can be so painfully honest. Women that share my pain. Women that have loved and lost - and continue to love in the face of adversity.

Sawyer's time on earth was too brief. That time, however, is out of our hands. Where he left off, we have begun to pick up the pieces of our broken hearts and started our journey down a road dimly lit by the light of hope.

We love you, our sweet angel.