Wednesday, June 12, 2013

Another Day, Another Hospital

Today we had our big day of appointments at Jefferson Hospital in Philadelphia.  Why Jefferson?  Because Dupont is just beginning their delivery area and are working with Dr. Weiner at Jefferson to get it started.

I had a serious case of nervousness this morning.  We've gone into every appointment we've had up until now feeling super positive and walked out feeling knocked down.  I thought for sure that it'd be another difficult, long, and hard day.

Then we saw this truck on the turnpike:

and don't ask me why (because it's crazy), but I instantly felt better....Remember, PAM is the short term for pamidronate (which is the treatment people with OI can receive that helps to strengthen their bones, lessen fractures, and help with pain).  I guess I felt better because I see it in Isaiah's future to help him; even though I've had some tough days where I think "crud, what if the doctors are right??" I still see Isaiah's future.  Even though my brain goes to the dark side every so often, I can still see him with us, living and growing, even when I'm feeling like he may not be.

Anways, given I posted this to facebook:

I bet you are willing me to stop rambling and tell you about today, huh?


Well we got to Philly in good time...

and made our way to Jefferson Hospital- really to the Maternal Fetal Medicine office there.  Luckily, Dennis the sonogram man was ready for us and completed the echo to check Isaiah's heart and did the oxygen test.  From the get-go, Isaiah seemed to be having a party in there.  He was bopping around, twisting, kicking, and making things tough on Dennis...but he got what he needed.  Every time Isaiah would strongly move I had (well, have) a tendency to hold my breath and Dennis took notice to it.   It truly makes me nervous- what if he breaks a bone doing that? (Overprotective mom alert.)  Dennis was sweet saying how good it was that he is moving, he must be feeling good!  

Dennis also was able to take advantage of Isaiah's position and got great 3D images of his ribs- and we noticed they looked kind of.....good!  He could even rotate the images. Technology is amazing.

Once we were done with this first ultrasound, we were off to lunch at a great little mexican place between 7th and 8th streets.

Once we returned we were whisked back into another ultrasound room where we took a closer look at our baby...

  We paid close attention to all the bones...and didn't see anything too alarming...but well, we aren't doctors.

After this almost 2.5 hour ultrasound (where they took a 45 minute break to discuss the findings with each other...while I sat gooped-up on the table getting more and more anxious by the minute), we went into Dr. Weiner's (the OB) office we met with Dr. Weiner and 4 others (2 who traveled from Dupont, 2 from Jefferson).  

When we sat down, we held our breathes.  

Dr. Weiner introduced himself and explained how they had been looking over everything.  He, along with everyone in the room, agreed that Isaiah does have a type of skeletal dysplasia.  

He said he agrees it does look to be a form of OI.  They can't rule anything else out right now though because it's just based on ultrasounds.  

But, given an OI "diagnosis".....when it comes to the type.....given the ultrasounds they saw today....

They believe the type Isaiah has IS NOT LETHAL.

They can't rule out type 2, BUT given the images they saw today, and the fact that they saw NO EVIDENCE OF ANY NEW FRACTURES/BREAKS since the last ultrasounds, they are optimistic.

He's grown.

His ribs SHOW NO BEADING.  NO CURRENT BREAKS.

His organs continue to look wonderful.

(Holy roller coaster!)

When the doctor said this, I burst into tears.  According to Dave, this caused almost everyone else in the room to tear up.  I asked "but what about his ribs?  They only saw the right side at CHOP but they were beaded, they were fractured."  He went back and looked again at the ultrasounds.  He showed us. They've grown.  They've healed?  They have no new breaks.

Dr. Bober, who came from Dupont to see the ultrasounds today, started talking.  He said if he had to give a type, he believes it's MODERATE (NOT SEVERE! NOT SEVERE!) type 3, possibly type 4.  We truly won't know until Isaiah is here.

He reminded us not to totally get our hopes up.  Things could change.  He could develop new breaks and this could change.  We have another ultrasound in 2 weeks, not only to see how he's doing, but to do another oxygen test.  It seems Isaiah had no change in his heart rate/movement when I was receiving the oxygen treatment like he should have....but it's early.  They said usually you'd see that more at 32+ weeks so we'll revisit.

When it comes to the plan of delivery....we still don't have one! (whomp whomp)  Because his prognosis is now better, having him at Dupont shouldn't be as imperative as we first thought.  They are now talking Jefferson (ha, yup, 4th possibility is added to the mix? cool.), between 38 and 39 weeks.  There's still a chance his lungs may have issues and it'd be more important for him to be at Jefferson for his breathing than at Dupont for his bones.  It would also make sense because it would keep us TOGETHER.  

I'm on cloud 9 right now....and hoping to stay here for a really long time.  

So there you go wonderful prayer warriors, well wishers, and pixie dust throwers....

It's working. Keep going.  

Please pray for his continued development and strength.

Thank you so so so much for your love, prayers, and thoughts.  Thank you.


4 comments:

  1. i could just hug that doctor! love this news! as always sending prayers your way! :)

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  2. You are so positive and love reading all your good news we continue to keep you guys in our prayers. So happy things are looking up. Love it!!!!!!!

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    Replies
    1. Thanks Nicole! We're definitely feeling good. :)

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