Going back in Time: The Diagnosis

I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!

Tuesday, March 25, 2008
I’m not very good at keeping secrets...I can keep them for other people, but I burst at the seams when it involves something in my own life, and I’ve decided to come out of the ultrasound closet (now that I’ve had 3 in the past few days). There are some people we aren’t ready to talk about this with yet because they require a different handling (nosy neighbors, employers, etc) but as far as friends and family go, I don’t want to leave anyone in the dark, even though I can’t control how people will respond, I think it’s better to get it out there and let those who want to be involved be involved in some way. This is going to be on the long side, because in a few short days our lives have changed forever in ways we never expected.

Ok, so, at first it’s going to sound like a lot of very bad news but there’s a lot of very good news too. Some of the good news is that our baby boy is a womb maniac, cracking up all the dr’s and ulrasound techs with his antics and the fact that he likes to punch me a lot. And wave his hands about. And flip around whenever they try to take his pictures. The very good news is that the right side of his heart is doing very well, and he seems to have no other problems other than the Big Issue.

Imagine you’re on the train to Babyville for the first time, and you’re seeing all sorts of new and exciting things..you’re picking out the theme you want for their room...registering for cute Pooh sleepers...when all of a sudden your Babyville train slams to a halt, brakes screeching, cars crashing into each other, and you have to get off the train and get onto a new train to Babyville. This train has a much more perilous route--sort of like in Polar Express. This new train is going to have a lot more stops, too, remote locations where few have gone and have many tests to pass and trials to overcome before you get back on and eventually reach your destination.

That’s what it felt like, when our ultrasound tech on Thurs seemed to be gone forever, and when the door re-opened, our dr walked in instead of the tech. We heard things like "something with the heart" "could be nothing" "referring you to a specialist" "go ASAP."

Fri: a surprise snowstorm hits WI and we are stranded 3 cars behind an overturned semi blocking the entire highway...Good Fri...the specialist and his team stay late to meet us and tell us the diagnosis. "Random and spontaneous event" "very serious" "nothing you did or didn’t do" "left side of heart not developed" "called hypoplastic left heart syndrome" "fatal unless open heart surgery performed within a few days of birth."

Suddenly questions like "What should I register for?" turned to "Will I come home to an empty baby room?" and "What type of birth should we have?" turned into "Will I get to hold our baby before he goes in for surgery?" and "How long will he have to stay in the hospital?" "Are my parents going to be disappointed that their long-awaited first grandchild might not survive...or will have long-term medical issues?"

Then all the spiritual issues hit..."Why?" I have always thought that nothing tests people’s faith like the question of babies and children suffering and dying. When it’s your own child, those feelings and sentiments are magnified intensely. It was a most difficult weekend because we got few answers last week, but the dr’s really gave us the greatest Easter present of all--a better chance of survival, because HLHS diagnosed in utero means a better survival rate than not diagnosed until birth.

Today, we got a lot of hopeful news. We met with an infant cardiologist who said our baby is a candidate for a 3-stage surgical process which changes the blood flow system and kind of switches the sides of the heart. I don’t mean to say it’s easy or straightforward--it’s one of the most complicated surgeries out there. The very good news is that Children’s Hosp in Milw has the best outcome rate for this type of surgery in the country--how’s that for coincidence?! He will have to go into surgery 3-8 days after birth. He will not be coming home before surgery, and will most likely be in the hospital 4-8 weeks after birth, at the minimum. After that, he will need lifelong monitoring and medications, but luckily that should taper off to apts every 6 months or so eventually. He may need a heart transplant at any time in his life.

More good news is that I have a lot of family and friends around Children’s Hosp that I can stay with for those hospital periods. More goods news--when Shawn or I or most of you were born, the chances of survival for this condition were...guess what...zero. Absolutely zero. There were no survivors of this condition before the 1980’s. Nowadays, a child with HLHS has a 75% chance of making it to 5 years of age. Today, many of these kids can live very good qualities of life.
It’s all been very overwhelming, and imagine all the new people in our life...suddenly we need a perinatologist, infant cardiologist, medical social worker (Shawn majored in medical social work, so luckily he understands what that person will be doing), surgeons, anesthesiologist, pediatrician, medical equipment for home monitoring...how are we going to pay for all this?!?!
It’s a long road ahead and filled with many possibilities and unknown outcomes, and I very much appreciate everyone we know keeping us all in your thoughts and prayers...one of our friends had her entire church praying for us on Sun, which was really nice and amazing. We think if he can live, he will be an incredible blessing to us, our families, and those around us. These are truly miracle babies. Oh, and more good news is this: I don’t have to modify anything about the pregnancy itself (other than all the extra tests and dr’s apts) because he’s fine where he is until birth. Therefore, they’re still letting us do the natural birth thing and such!!

I will keep everyone posted and probably start a separate blog on this issue. Mostly, we just want everyone to still be happy for us and happy about the baby, and treat his life with the welcome we would give any baby entering this world. We don’t want to let this "thing" rob us of our joy, or "abnormalize" our experience any more than we absolutely have to. I wish I could tell everyone more about HLHS, but not a whole lot is known about it. The best place to look is just at the little info there is online--and don’t forget to look at the success stories out there!