Friday, June 28, 2013


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Ignore this post....learning some blogging lingo :)

Wednesday, June 26, 2013

I'm sorry, did you say 50%?!?

Well we may have gotten completely soaked just walking into the house from our car, but if that's the worst part of today, we'll take it.

The best part of today? The oxygen test.

We went to Jefferson Hospital today for an OB visit, an echo that involved some oxygen, another ultrasound to check Isaiah's growth and break status, and a meeting with a neonatologist.

The OB appointment went smoothly- my blood pressure was 116/72- not too shabby given my worry of how Isaiah would be doing on the oxygen test. And I've only gained 1 pound since my last weigh in (I really don't know how that's possible given Dave's birthday/Shady Maple trip, carnival food, and movie theatre popcorn...but I'll take it!)

Once we were finished with the OB appointment, we were whisked off to an ultrasound room with our old friend Dennis for the echo.  He checked out different areas and measured their oxygen levels and had labeled everything"room air".  Isaiah seemed to be sleeping soundly.  Dennis hooked me up to the oxygen and we waited 10 minutes...He continued to sleep; he moved only a little, so I was a little worried he wasn't responding to the oxygen again.

That would mean his lungs aren't developing as they should be....not good.

But I noticed as Dennis was measuring, the blips were higher and closer together.

We finished up and Dennis took us out to the waiting room.  It was there he said to us "Your baby did very well in the oxygen test.  We look for an increase [in oxygen] of 20%, your son had an increase of over 50%."

I'm sorry, did you say 50%?!?!?!

Yup. That's what he said. Cue hugs all around, even a kiss on the cheek from Dennis (he has a daughter my age) and just glee.


While floating on cloud 9, we made our way to lunch and enjoyed some seriously delicious sandwiches at Au Bon Pain.  Seriously, go there if you ever have a chance.  Their chicken/avocado sandwich? YUM.  Moving on...

We ate quickly and were back on the ultrasound table with Heather before we knew it.  She took measurements of his long bones and a few short bones that she could see in his left arm.  She also measured his head and torso.  Isaiah is starting to run out of room in there so it's getting tough to get good measurements.  They took another 3D ultrasound of his ribs.  They saw his adorable foot.  We watched him practice breathing (good job, Isaiah!).

We met with the doctors who informed us that Isaiah has seen some more growth! He is looking better than expected!  There were no new "observable breaks"!

He's measuring 2 lbs, 12 oz and is in the 27th percentile.  Although he's small, that's to be expected.  As long as he's between the 10th and 90th percentiles, they aren't concerned there.

After our meeting with the OBs, we took a tour of labor and delivery, including the nicu (I was so distracted by the teeny tiny beautiful babies!).  We sat down with the neonatologist, Tammy from Dupont, and Alexa (from the MFM office) and they answered questions we have and told us about their experience with babies suspected of OI.

After that meeting, we went back to MFM and met with the OBs again.  They still don't want to set a date for the c-section, but are confident it will be somewhere between 38-40 weeks (before 40 weeks).  They said we'll set that the next time we meet- 4 weeks from now.  We'll do another OB appointment and ultrasound.

I just have to say, the team they are forming for us is amazing.  They are kind, optimistic, knowledgable, and willing to listen and learn as much as they can about OI.  (Side note: Dr. Weiner went down to Dupont to shadow Dr. Bober in the Day Treatment center and met some families that were there for their PAM treatments.  I actually found out about this from a wonderful mom in the support group...he was full of questions and listened to a number of parents.  Amazing.)

So there you have it....a picture-free post (sorry, ultrasound picture to come when I get off my butt and pull it out of our bag) full of good news.  Let's hope they continue to get better with every appointment. :)

Sunday, June 16, 2013

Happy Father's Day

"What can you say to someone
who has always been one of
the most essential parts of your world;
someone who took you by the hand
when you were little
and helped to show the way?

What do you say to someone
who stood by to help you grow,
providing love, strength, and support
so you could become the person
you are today?

What can you say to let him know
that he's the best there is,
and that you hope you've inherited
some of his wisdom and his strength?

What words would you say
if you ever got the chance?

Maybe you just say
"I love you, Dad..."

and hope he understands."

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 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.

Sunday, June 2, 2013

Celebrating Isaiah- Part 2

Oh my goodness, are we lucky...My awesome family and friends threw me a shower....just 5 minutes from my house!

I was surrounded by my fabulous family...
and friends...
As you see from above, I also got a little goofy with the head hostess, my big sister.

We celebrated Isaiah's future....  
by eating yummy Mickey Head-covered cake :)
by offering our wishes for him...

by spoiling Isaiah and myself with crazy amounts of gifts. (Holy moly is my family generous or what!?)

Personalized gifts...

Baby must-haves...

And amazing handmade gifts that we'll treasure forever...
We enjoyed good food and good company...

We spent time snapping pictures and sharing laughs...

Millersville, represent! :-P

SCS/O'Hara represent! haha
(Look at her adorable kiddos!)

I am so grateful to those who worked their tushes off...

My sister put together a wishing well for the shower.  This is where my family and friends showed even more of their generosity.  I was already so spoiled by gifts, but you gave even more.  Dave and I are in awe of you and what you have done for Isaiah's future medical needs.  

Thank you.

Baby Isaiah, you are a Blessing.  Together we were loved and spoiled.  We are the luckiest.  You are not only spreading awareness of such a rare disease, but you are spreading love and bringing us closer than we've ever been to so many.  

The doctors have told us to "prepare for the worst but hope for the best".  Mentally, we're doing that, but we don't think it's necessary and thanks to the big-hearted people in our lives, we're preparing for the best along with the hoping and praying. 

Celebrating Isaiah- Part 1

This weekend was quite the party for me.  It began at work with our end of the year staff breakfast...which turned out to be a surprise shower for myself and 2 of my coworkers.  We're all having babies:

Megan is due in October, Steph is due in September, and I am due in August.

Everyone surprised us with Children's books!

We enjoyed good food...

And good company....

We laughed and we the same time. :)
(Steph isn't shown in this picture, but she was pointing and laughing along with me.  
Love you, Megan!!!)

It was a wonderful way to celebrate our babies.  We're so grateful for our generous and fabulous coworkers/friends.  Thank you, Paradise!  <3

Part 2 is coming shortly....I was lucky enough to continue the party on Saturday with more friends and family.  :)