Worrisome? Nah.

The fabulous OI specialist, Dr. Bober, from Dupont called this morning.  Not only did he do some research for me  (He asked his patients' families that are local to me who their pediatrician is so we have someone familiar with OI.  I had been feeling like I was on a wild goose chase.), but he took a moment to chat about what he's heard from the rest of the team.

He was told the recent ultrasounds and tests have looked good.  I was taken aback because that word "worrisome" rings in my ears constantly and especially when I think of the most recent ultrasounds.  

I told him how doctors had said Isaiah hadn't grown as they were hoping, how his rib cage wasn't as big as they were hoping, and how they are concerned for his ability to breathe.  Dr. Bober said he is confident in the baby, he doesn't have any breaks in his ribs and that's a good sign.  He also mentioned the accuracy of measurements in ultrasounds this late in pregnancy can be off- meaning his rib cage may be bigger than it's measuring- he's all squished in there.  

That does remind me of a friend of mine who told me her baby was measuring around 4 pounds in her last ultrasound right before her c-section, and her baby came out 7 pounds.

So, our confidence grows a little more.  

When we go to our last appointment at Jefferson before the c-section, we are meeting with a number of people to set up a birth plan.  They are going to give us many different scenarios and we are to give a basic idea of how we'd like the doctors and nurses to proceed.  We know they are going to ask us about things we'd rather not think about (ventilators, compressions, etc), but it will be extremely beneficial to talk through all the possibilities...and pray none of the scary ones happen!

Thank you so much for your continued prayers and love.  

-Vicky  

2 weeks!

2 weeks until we meet Isaiah and see what's truly in store for our little family. 2 weeks!!!! We've been busy with the finishing touches on the nursery and getting more and more excited to meet Isaiah.   We're feeling positive today, but every day brings different emotions.  Isaiah has been really monkeying around; he's a strong one, which brings much hope and faith. <3  We have one more appointment at our local doctor and one more at Jefferson before the big day.  We'll be sure to update with any news.  Thank you so much for your continued prayers. 

Feeling Blessed

Ok, so first I want to apologize for my little hissy fit yesterday.  We had been used to frustrating doctor's appointments, but after the last two were so awesome, this one hit hard.

And it wasn't even that bad.  The doctor said that he still believes it's not the lethal type of OI, but I had trouble with that word "worrisome".  It also concerned me because the other doctor in the room didn't know how to word things, which made me worry that they are more concerned than they are letting on.

Over these past few months, I've wondered if one of the reasons God gave us Isaiah is to bring me faith.  I've always slacked there.  I've always questioned...until Isaiah.  Although now I question myself.  Am I praying right?  Does He hear me?

He hears me.

Last night, I was laying in bed while Dave was brushing his teeth, and I said "Please, please protect him. Please help him grow strong. Please help him live.  I promise, we'll take such good care of him if you let us have him."

And Isaiah did some kind of backflip- my whole belly jumped (that rarely happens).  It's like God was telling him to remind me that he's alive and he's going to be ok.

I said the same darn thing this morning when I woke up and he did it again.

Then I started crying again...and Isaiah kept on moving.  It's like he's saying "Gosh mom, knock it off, I'M OK!! We're going to be ok!"

So today I'm stronger and I want you all to know that.   A big reason for that is the support I received after I posted about our appointment.  My phone went crazy with texts.  My Facebook (and the blog) went crazy with such supportive comments and messages from fellow OI parents, close friends and family, and friends that I haven't seen in quite some time.  You shared my post to get the word out for prayers and I received more messages of support from people we have never met.

Thank you.  I needed that.

Thank you so much.  God heard you all before, with even more people praying, He's going to answer our prayers.
-Vicky

The date's been set!

I'm about to have a bit of a tantrum. Read this first part at your own risk of sanity.

This is not how I imagined things back in December when I saw that faint 2nd line.  I didn't imagine we'd have to ask for prayers that our baby would live.  I didn't imagine we'd go through hospital after hospital trying to find doctors who offered hope and honesty.  I didn't imagine our son would have a disease where his bones are fragile.  I didn't imagine my son's thigh bone would be in the shape of an M when it should be straight.  

I didn't imagine any of this.  And it's not freaking fair.  

I imagined cuddling, cooing, and giggling.  I imagined throwing him in the air and watching Dave run around playing basketball with him and taking him to his first Eagles game.  I imagined taking him to Disney World, meeting Mickey, and riding Big Thunder by my or Dave's side while the other took a picture of the ride with Isaiah's hands in the air, giant smile on his face.

I had to change my visions starting back on April 2.  Since then I've imagined him in a wheelchair.  I've imagined him defying the odds that he'll be in a wheelchair and walking.  I've imagined surgeries.  I've still imagined Eagles games and Disney, but experiencing them in new ways.  I've imagined he and Dave building Lego towns and playing Mr. Potato Head.  I've imagined kissing him goodnight and thanking God for letting us have him.   

At my lowest point (24 weeks), I imagined him in a casket.  

At 32 weeks, that image vanished.  Thank God.

In 20 days, these visions I've had will mean nothing, because we'll get to meet him.  We'll get to hold his hand and look into his eyes.  We'll get to squeeze those chubby cheeks and kiss that button nose.

In 20 days.  August 12, 2013.

As excited as we are to know when he'll be breathing and living outside of me, there's still a chance the structure of his ribs will make it difficult for him to sustain life.  He hasn't had the growth in the last 4 weeks that the doctors were anticipating.  He's now back down below the 10th percentile in growth.  He did double his weight (he's now 4 lbs, 2 oz), but that's probably from all the ice cream I've been eating.....

I tend to make jokes at inappropriate times.  Sorry.

The doctors are still optimistic that Isaiah's condition isn't lethal but they describe his situation as "worrisome".  There's no way to know how his rib cage will handle his need to take deep breaths.

For now, Dave and I are making a plan with the head nurse of the NICU at Jefferson.  For now, we wait, we pray, and ask for more prayers.

Please pray for Isaiah.  Please pray that he'll grow over these next 20 days.  Please pray that his body will let him breath and live. I know God has been listening.  He has, because it's not looking lethal. It's worrisome, but not lethal.  

We believe in Isaiah and we believe in the power of your prayer.

Please spread the word and have your friends, your family, your churches, your everybody pray for him, for us.  

I'm sorry this post wasn't more positive.  It's a down day for me; I'm scared and I'm being extremely open today. 

-Vicky

Isaiah's Eager Fur-Brother

Well, we're confident to say that we'll most likely be meeting Baby Isaiah in less than a month (we'll find out what day his birthday will be in just a week (ahhhhh).

I'm sure there will be some major adjusting in this household...especially in this little relationship...

Oh that Carl.  He sure loves to cuddle....

But ever since Isaiah started growing, our method of cuddling has changed:

He's all about the belly.

Some probably think he is thinking evil cat thoughts of how he'll torture Isaiah (like any good big brother)...

I like to think he's thinking of how much he loves him, and how excited he is to meet him:

Carl's doing a very good job letting Isaiah's things be just Isaiah's. (Yes, that is a stuffed lamb in the co-sleeper.)

(For the most part.)

Although it will surely be a big adjustment for everyone in our little family, at the end of the day, we'll have each other...

and it's going to be amazing.

Perspective

Perspective is an amazing thing.

Sunday night we had a rain storm.  A rain storm that, according to the national weather service, dumped about 2 to 2.5 inches of rain in about 3 hours.  We heard it and thought nothing of it.  Thankfully, Dave ran downstairs early in the morning to grab something and found the laundry room....with a big ole puddle of water.  He let me know and did some detective work.  It hit the carpet too. Sigh.

We've had it bad once before in the 2 years we were here- during Hurricane Lee...but that was a "once in a 30 year storm".  We've since had an issue in the laundry room twice but lucked out everywhere else so we didn't make waterproofing a priority. Woopsie. Life lesson learned.

Before Isaiah existed in our world, I was a bit of a pessimist.  When this situation happened before, I was a big baby about it.  Don't get me wrong, tears have been shed over the past 2 days...I mean, this is a pregnant lady's nightmare.  I have been an organizing and cleaning machine and I was so confident that we were "ready for Isaiah" and this has set us back quite a bit when it comes to feeling "ready".

Now, with Isaiah growing inside of me, I think, "this could be worse".  My view on what really stinks has really changed.  We still have a roof over our heads.  We can salvage everything but a little carpet padding, and that can be replaced.  We've already scheduled a waterproofing company to come and help us avoid this from happening ever again as well as a carpet company who told us what to do to get it dry (and saved us $300-$400 by telling us how to DIY it) and will be back after the waterproofing is done to replace the padding we got rid of, stretch the carpet, and sanitize it all.  

It may happen while we are giving birth...but it'll happen; it'll be fixed.  Luckily we have family who will stay at the house to oversee everything if it's needed.  My dream would have been to have the house "perfect and ready for Isaiah" but ya know what? That's not important.  What's important is we have our home, we have each other, we have our baby.  

And, well, if my crazy pessimistic sides creeps up again, I'll just hide in the nursery...(We have a crib!)

This post should totally be on our house page...but I didn't want to ignore this blog for another 3 weeks (that's how long it is until our next appointment)...so consider it a brain dump.  

We hope everyone is staying dry; don't worry, the sun will be shining again soon.  Enjoy your 4th of July, friends, family, and blog readers....<3

-Vicky