So here we are. OIbelieveinIsaiah.blogspot.com
A big motto for people with OI is "O.I. CAN!" Well, Dave and I don't have the disease, our baby does. And simply, we believe.
We believe our son is going to defy the odds....I should probably back track.
For those that don't know Dave and I, here we are:
We've been married for 5 years, together for 8 years.
We are first time parents-to-be to this beautiful baby- Isaiah David (cuteness alert!):
We may be biased, but he's obviously the most adorable baby in the universe.
We'd been hoping to start a family for some time. We found out about our pregnancy a few weeks before Christmas of 2012. This gave us the opportunity to tell many family members face to face, so although it was early, we shared our exciting news: http://youtu.be/su5hjOPkG8c
After our announcement to family, we slowly rolled out the news to friends...and before we knew it we were revealing our surprise to Facebook with this post on our shutterfly page: http://dacky.shutterfly.com/ournewhouse/152
The weeks went by, everything seemed to be progressing as it should. Baby's heartbeat was always "perfect". I had zero morning sickness. I was enjoying almost everything about pregnancy (except the growing pains....ladies who have experienced it know exactly what I'm talking about here). We went to our 20 week ultrasound like 2 kids on their way to Disney World.
We had our ultrasound. We were on cloud 9. After that, we met with a doctor (what was normal protocol...), where our world came crashing down.
"We have some concerns about what we saw on your ultrasound today. Usually we like to see growth in the 50th percentile, your baby's arms and legs are in the 5th percentile. The long bones are curved when they should be straight. Is there any dwarfism in your family?"
Dwarfism? Just the opposite. We've been joking since the beginning about how our baby may end up being a giant since we both have some seriously tall siblings.
We went home. We cried. We racked our brains trying to figure out what to make of the appointment. We googled "curved long bones during 20 week ultrasound". This gave us hope. Babies grow at different rates. Maybe the arms and legs will sprout and grow and the baby will be "normal"?!?!
We scheduled an appointment with a high-risk pregnancy specialist. They squeezed us in for 2 days later due to the "urgency of our situation".
We still hadn't found out the gender of our baby. We had asked the ultrasound tech to write it down instead of telling us. We had big plans. After the appointment we had thought about canceling our "baby day", but we just couldn't, we had hope that the specialists would see something different.
We went on with our plans:
(yay, finally got one of the videos to embed!)
It's a boy! Our boy. Our son.
Our appointment with the specialist came quickly. We spent way too long in the crazy busy waiting room. Then we had an ultrasound that lasted an hour and a half. (Baby was stubborn!) The doctor not only confirmed the idea of skeletal dysplasia (dwarfism is a type of skeletal dysplasia), but he informed us that he was extremely confident that our baby has Osteogenesis Imperfecta. There were healing fractures in our baby's arms and legs, but at the time, his chest and spine looked great. His head was too easy to change the shape of with the ultrasound thingy, which is another sign that he has OI.
We had another tough day but we quickly rallied our hearts; we shared the news with immediate family.
To think that just earlier in the week we had visions of first words and first steps, and now we wondered, will he be able to walk?
We found oif.org. We read about OI.
We accepted this diagnosis. We still have our son. We knew, though, that our plan to deliver him close to home may have to change. This disease is so rare, not many doctors and nurses have experience delivering a baby with OI.
I called CHOP the very next day after the appointment with the specialist. The doctor had recommended talking to doctors who specialize in OI, so I did just that. We made an appointment with the genetics specialists there and learned more about the disease.
We couldn't keep this news to just a select few...we knew we had to share and spread the word. We needed support. We needed faith. We needed prayers.
We put together a video to share the news with everyone...
We found a support group for parents of kids with OI. That group is FULL of over one thousand members, many of which have kids with severe OI that CAN walk...they just learned a little later than other kids their age....but their first steps were a miracle and are inspiration to us.
Weeks later we went back to CHOP for an entire day of many appointments....appointments with genetic counselors, ultrasound techs, OBs who specialize in special delivery cases, and more. We had a ridiculously long day. And at the meeting at the very end of the day, it became agonizingly longer.
The doctors saw curved long bones. They saw fresh fractures in his arms and legs. Devastatingly, the doctors saw fractured and crocked ribs.
We saw our baby hiccuping. We saw him yawn. We saw him waving and sucking his thumb. We saw him moving his little mouth like he was talking.
We found out at the meeting that Isaiah's condition is possibly worse than thought at 20 weeks. They believe he has type 2 or possibly a very severe type 3....
And they believe it's lethal.
They believe it's lethal, because, although his chest was measuring correctly at the time, it's "likely" that because of his broken ribs, he won't be able to take full deep breaths when he's out of the womb- his lungs just won't have the room.
Is there a word for worse than devastated? Because that's how we felt.
Luckily, we have the OI support group. We posted our "diagnosis". Within 24 hours we received well over 25 comments telling of similar diagnosis's....and yet their babies are alive. Some even with type 2! Some are just not as severe as the ultrasounds made them look. They range from only days old to 17 years old.
And just like that, our hope returned.
The doctors advised that we have an amniocentesis done to verify exactly which type of OI Isaiah has. After a lot of thought, we decided against it. We'd rather have the hope. We'd rather the doctors not have a "confirmed type 2 diagnosis" because if they did, they'd treat the delivery differently; I'd become the priority and we'd have a vaginal delivery that would likely cause Isaiah even more fractures, and we could "spend the time we have with him alive, with him".
Listen, we want them working their tails off on our son. We don't want him living off a ventilator, but we want to give him a CHANCE, because darn it, we believe in him. We believe in his strength. We believe in his ability to breathe.
There is no giving up on Isaiah from anyone except Isaiah.
We're still talking with CHOP, but as per the advice of so many OI parents, we're also talking to AI Dupont in Delaware. They have more experience with OI. We're hoping they'll be more positive on the diagnosis and have the hope for him that we have.
I have more to share, but I don't want to scare you away thinking I am going to write novels in every post. This post is an introduction to our story. Some posts in the future may be about the past and our excitement for our first baby. Some posts may be about our doctors appointments and our plans for delivery. Some may just be brain dumps; some when we're having good days, some not so much.
We hope you'll follow us in our journey in bringing Isaiah into this world. We hope that if you believe in prayer and a higher power that you will pray for Isaiah. Pray for his ability to breathe. Pray for his strength and bravery. Pray for his will to live. Pray for our continued strength and optimism. Pray for the doctors and that they don't give up on him.
Most of all...pray for a miracle. If we have thousands truly praying for Isaiah, I believe God will hear us.
O.I. Believe in Isaiah, and we love him with all our hearts...