Bully behavior

Normally, I don't get this fired up.

Normally, I don't "like" groups on facebook only to disagree passionately with everything that they have to say.

Normally, I let someone else fight their own battles.

But last night, after witnessing some of the most atrocious, vile behavior I have ever seen in my life - I couldn't sit quietly in the corner. I had to stand up. And I wasn't alone.

A mother, Jill Haskins, lost her beautiful baby Joshua early yesterday morning. His perfect, broken heart worked as hard as it could, but after a long fight his tiny body succumbed to a CHD - Hypoplastic-Left Heart Syndrome.

And now, he is resting in the arms of Jesus. Everyone in the CHD community followed Joshua's story. He and his mother are an inspiration to so many. His loss is so great. And this week especially, after so much loss - while still coming to terms with the death of my own son - has been extremely difficult to comprehend.

Within hours of her son's death, Jill's blog, facebook page, email account and Joshua's caringbridge page came under attack by "intactivists" who full believe that her son's death was the result of his circumcision - you know, not the fact that he was born with half a heart.

Even more disgusting was a certain blogger condoning this type of behavior while just a few weeks earlier - this exact same blogger sent her followers over to this very spot where a relentless attack on me began and continued for weeks.

Is there some sort of movement going on that I don't know about? Is ganging up on the bereaved mother considered some sort of easy attack because maybe she won't stand up to your antics in her time of great sorrow? Maybe she'll take it and you'll get your point across while getting your name out there? No matter what the reason, it's nothing short of the most juvenile, disgusting behavior I have ever seen as a mother in my entire life.

Jill, you are in the hearts and prayers of so many.

Ewan and Joshua

Two mothers - Are going through hell. I don't even know these two women, yet I really do know them and what they're going through.

One has no idea whether or not her son will survive the night...

The other is learning what it's like to leave your baby, alone. In the NICU.

Two little baby boys. Ewan and Joshua. They need so many prayers. And the mothers, they need them too.

CHD's are hell.

But, there are a few out there who are working so hard in their baby's memory. Becuase all they have to hold on to are the memories. And all they want, is to give every mother memories that last longer than the short lives of too many of our heart babies.

Tonight, pray for these two babies. Pray for their parents. Pray for their siblings. Pray for their families.

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.

"Our story"

Today was my post-partum visit with my MFM doctor. We learned more about Sawyer and a lot more about what also happened to me during the pregnancy and delivery.

First things first - "Dr. Digi" sat down and went over Sawyer's brief life in the NICU and we were informed that he had a severe form of Tetralogy of Fallot - Truncus Arteriosis Type 4. We are going to get a much more detailed explanation from Sawyer's doctor when I meet with her next week - but from what we were told, his condition was not only rare, but fatal.

Dr. Digi also explained to us that Sawyer's heart defect and the issues with the pregnancy (premature rupturing of the membranes, low amniotic fluid, placental abruption) were two completely separate things. The fact that both these things occured simultaneously was extremely rare. Basically, we had a better chance of winning the lottery.

So, to try and figure out why I had such premature labor, Dr. Digi is doing a full thrombophilia work-up to determine if there were any underlying causes that we aren't aware of. I'm hoping that this bloodwork finds something because at least we could have an answer and know what we were up against if I get pregnant again.

What does all of this mean for the future? A lot.

I'm at a much higher risk of having premature labor and having a baby with congenital heart defects. But, my doctor and I are going to meet again after more testing over the next few months to determine a plan of action for the next pregnancy.

At the very least, today's visit was the furthest thing from the nightmare I envisioned it to be. I was so nervous when we arrived and was shaking so bad that I could barely sign my name when we first arrived.

My doctor's receptionist - Karla - stood up, reached over and hugged me and said how sorry she was. And we cried together.

It was at that moment that I felt "home" - My nurse, my doctor, the residents - everyone in the Maternal Fetal Medicine department have been there since the beginning - and all of them were here for me in the end.