Luke goes to the Crew game, Lehner's Pumpkin Patch & the Zoo!

When we first found out about Luke's diagnosis, we were encouraged to come up with things we wanted to do with him and to document them.  Kind of like a "baby bucket list".  So we started to think about things we would've liked to do with him.  One of those things was to take him to a Columbus Crew soccer game.  Justin and I had season tickets this year, so we got to enjoy many home games.  On October 26, we took Luke to see them play!

The next outing we took our little boy to was the pumpkin patch!  It's always something we really like to do in the Fall, so we knew this was a place to visit with him.  We will be sad come next Fall when we can't take him, but at least we know he was there with us this year.

The next outing we took him on was to the Columbus Zoo!  We went on a Friday afternoon when it was about 45 degrees!  It was a nice time to go because there was hardly anyone there.  We leisurely walked around looking at the various animals and chatting about how fun it would've been to bring him here when he was older.  They are bittersweet moments, but glad we could do it.

We are going to soak up each and every day we have with our boy.  Our time with him seems to be going to fast.  I hope he's enjoying each day with us!  I know we have loved it and will never forget the fun things are doing together!

Auntie Beth Runs for Lucas

October 19, 2014 was the date for the Columbus Marathon benefiting Children's Hospital and sponsored by Nationwide Insurance.  My sister Beth decided that she wanted to run in the race.  She has run in several half marathons, but this would be her first full marathon ~ 26.2 miles all in the name of "fun".  Not what I'd consider fun, but hey, she loves it and we love supporting her!

A few days before the race, Beth had brought us a meal along with a card.  We opened the card and read what she wrote, and it literally made me burst out in tears.  Good tears.  My sister was running the race for Luke, in honor of him and all other babies who lost their lives due to Potters Syndrome.  This is the card...

It was the sweetest, most thoughtful thing she could've done.  She even ordered a teal running shirt to wear in the race.  Teal is the official color of Potters Syndrome.  It was so touching.  She also wrote Luke's name along with a Bible verse on the bib that was on the front of her shirt.  Here's the bib...

Justin and I couldn't be there at the race due to our trip to New York, so my mom sent us a picture of Beth after the race with her medal.  She did it.  She finished!

Beth, thank you from the bottom of our hearts for running for our boy.  I know how hard it was both physically and emotionally.  We love you and your little nephew loves you too!

Luke and New York

In late October, we were able to go to New Jersey/New York for Oticon Medical's advocacy leadership conference.  Oticon is the maker of the hearing aid Justin wears.  We've been graciously invited to attend the conference the past few years and always have a great time learning more about the company, new products, their vision, etc.

When Luke was diagnosed, we made a pact to do things and go places that we would've taken Luke to.  New York was one of those places.  Eventually we wanted to take him and show him the city and all the exciting things it had to offer.  His trip came a little earlier than planned :)

He did great on the flight.  No crying, no tantrums.  Ha!  Kidding :)  I was a little nervous to fly being pregnant and all.  Would I get sick?  Would the nausea show it's ugly face?  I was fine and was so thankful!

Oticon took the whole group into NYC for dinner and a show.  At first we didn't know what we would be doing; it was a secret.  We ended up going to dinner at a really neat place called The Library at the Public.  The food was fantastic!  When we pulled up to the restaurant, we noticed there was a theatre across the street and Blue Man Group was performing there.  Hmmm, could that be the show we're going to?!  It sure was!  After dinner, we all walked across the street to see Blue Man Group!  Neither Justin or I had ever seen the show, so we were very excited!  It did not disappoint.  It was so much fun!  It was very loud with a lot of drums, so I'm sure Luke could hear it :)  After the show, we took a picture outside the theatre.  We wanted to document us being there as a family of 3.  It was bittersweet knowing that we won't be able to walk the streets of New York with Luke, but he was there with us.  And I'm sure he liked it just as much as we do :)

MRI Results

On October 24, we had an appointment with my doctor to go over the results of the MRI we had.  We also were going to do another ultrasound to check on Luke; make sure he still had a heartbeat.  I'm always excited to see my little boy on the screen!

Justin was with me along with my Mom, and Justin's parents.  As we waited for the doctor to come in,  I was pretty anxious.  I was afraid to hear any bad news.  I was still holding onto hope that they were wrong and he would be ok.

Doctor Melillo came in, and quickly began to tell us the news.  He didn't waste time, which I was grateful for.  Don't leave us hanging!  He began with...

"Unfortunately, it's what we thought.  No kidneys or bladder were found."

The tears began to flow.  There it was, the news were we dreading.  The finality of it was overwhelming.  I didn't realize just how much we were hoping he'd have a chance of survival.  Until that moment.  Now we know for sure that his chances of surviving past birth are basically 0%.  It was a huge blow.  It felt like we were finding out the bad news all over again, for the first time.  It made me so sad to now know his fate.

After we discussed the results further, doctor M said...

"Alright, now let's take a look at this little guy."

The best part of the appointment.  He squirts that oh so lovely blue gel on me and gets going.  His heartbeat pops right up.  It's always the first thing I look for!  So glad to still see it!  He takes measurements of Luke's body to see how he's growing.  He's right on track!  He was just shy of 15oz.  He was more active than normal during this scan than previous ones we had.  I was so thankful for that.  He's so squished in there, he hasn't been very active on screen.  This time you could see him squirming around some.  Thank you, Lord :)  Another little gift.

We wrapped up the appointment and scheduled the next one for two weeks out.  So, we wait til' then. The rest of the day, and the ones to follow, were very difficult.  We had to really come to grips with the fact that we will face losing him.  It breaks our hearts.  My heart has never hurt this bad before.  Yet, through the pain and through the heartache, God has proven Himself faithful over and over again.  He's with us, He's holding our hands, and He's grieving with us.

I'm thankful for another few weeks with my boy.  We still have him, living moment by moment.

The Empty Chair

On October 12, 2014 we had a photo shoot with Justin's boss' wife, Anne Marie.  It was a Sunday and turned out to be a beautiful day!  Whenever you schedule something outside in Ohio, no matter what time of year, you're always wondering if weather will cooperate.  Well, today it did.  Another little blessing from the Lord.

As we were getting ready for the shoot, I was excited yet at the same time I was nervous.  I'm assuming with a "normal" maternity shoot, it's a very happy time full of promise of what's to come.  Well, for Justin and I, it's a bittersweet time.  We are full of joy knowing Luke is still alive in me, yet we know what's coming.  I was scared about how we'd respond in those difficult moments of belly shots.  Regardless, we knew without a doubt that we wanted to document ALL that we possibly could during this time, as our time with our son is fleeting.

The photo shoot was at a beautiful home in Delaware, Ohio.  Anne Marie knew of this place and knew it would be private.  We thought a private place would be good just in case we did get emotional and the ugly cry started.  We thought that was a good idea, that way we could just be as real as we wanted not worrying about what other people were thinking.

As the shoot started, we were doing just fine!  I remember thinking to myself...

"This isn't as hard as I thought....this is really fun!"

And then the hard part came.  Anne Marie brought with her a little brown chair for us to use as a prop.  It was simple yet rustic.  She set the chair up in the middle of a leaf covered path and set blocks on it spelling out his name: L U C A S.  She put little shoes that were a gift to us from Emily Shuter and also a really cute sweater we had picked out the day we found out he was a boy.  Justin picked the sweater out; he loved it :)  We backed away, and gazed at the chair as Anne Marie took pictures of it.  And then the tears started to flow.  There was something so sad about looking at this empty chair knowing that our little boy wouldn't sit in it.  Knowing that it would remain empty  In a way it was symbolic of what wasn't going to happen.  Lucas won't sit on my lap.  He won't sit on his daddy's lap.  He won't sit around the table with our families at holidays.  He won't sit on Santa's lap at the local mall.  He won't sit on the floor in our home and play with toys.  I just cried.  Cried at what our little boy would miss and what we would miss as his parents.

But, as I reflect more and more about that empty chair and what Luke won't be able to do here on Earth, I realized something profound.  No, he won't sit on MY lap, but all Luke will know is sitting on the lap of his Creator.  We may have moments with him after birth, but our little one will be at the feet of Jesus and that's so incredibly amazing to me.  What could be better than sitting on Jesus' lap?  Selfishly, I want him here with us.  I want him.  But it brings joy to my heart knowing that Jesus will hold him, and love him until his mommy and daddy can.  I imagine Jesus reading him stories.  I imagine my Lord singing lullabies to him, all while sitting on His lap.

So, until we can hold and sit with our little boy, we will be imagining him with Jesus.  The best cuddled, story-teller, and singer of lullabies that there ever was and ever will be.

MRI...yet something amazing happened.

October 10, 2014

This is the day I was fortunate enough to go to Children's Hospital and have an MRI done.  Sense the sarcasm?  I wasn't really that excited about it.  Why you ask?  Well, for those of you who don't know, Children's is a ginormous place with acres and acres of hallways, stairways, blue lines, purple lines, yellow lines, and such that you follow all over the place to help you find where you need to be.  Well, without too much trouble, Justin and I found the place we needed to be.  Crisis averted.

The purpose of this scan was for my doctor to be able to see what exactly is missing or not missing in Luke's body.  What organs are there.  Or not there.  Because of the lack of fluid around him, it makes it very difficult to see things clearly on an ultrasound.  The MRI would look more closely into his body so that we know exactly what we're dealing with.  I was dreading this because I didn't want the results to be worse than expected, yet we are hoping for results that can give us some hope.

It's my turn, and they call me back.  They put a hospital bracelet on me, have me take off all metal, and change into those super cute hospital gowns.  Ok, not cute.  I'm lead into this big room, with a huge, loud humming tunnel-like thing.  I lay down and am told to stay as still as possible.  I'm slowly moved into this tunnel and it's tighter than I remember most MRI machines being. Is this thing made for a 5 year old?!  Oh wait, we are at Children's Hospital.   Holy cow, it was a tight squeeze.

The scan begins, and not only is it tighter than I remember, but it's also louder!  This thing made so much noise and even with the ear plugs they gave me, it was deafening!  About 2 minutes into the scan, something happened....

I'm laying ever so still, and I feel a flick.  A strong flick down low near my bikini line.  Oh my word, was that what I think it was?!?!  Was that....Luke kicking me??  My heart starts to race and I'm praying that it happens again.  Boom!  There it was again, but even stronger this time!!  I can't believe it.  In the midst of this awfully uncomfortable procedure, I felt my boy.  For the first time.  Then the tears started to flow.  Since I was laying flat, the tears are running into my ears, into my hair, under my chin.  I don't care, I was so overwhelmed with joy at that moment!!!  About 20 minutes later, the scan is over and they pull me out.  The man who performed the scan saw that I had tears running down my face and he looks at me and says...

"Oh no, are you okay?"  I think he thought I was panicking.

"No, I'm fine.  I just felt my baby move for the very first time, and it means he's still alive!"

A grin overtakes his face as he says..."Nothing like it."

I got dressed and walked into the waiting room where Justin was.  He could tell I'd been crying and he had a worried look on his face.  I broke into a huge smile and said...

"I felt him move!!!"

"You did?!?!  What did it feel like?"

"Like a strong flick against my lower belly!"

He gave me a huge hug and said...

"He's still there!  That's my boy!"

Again, this is another example of how God has given us amazing gifts throughout this difficult road.  In the middle of this oh so enjoyable procedure, He gave us the gift of allowing me to feel Lucas for the first time.  I was told that I might not ever feel him at all!  I felt him twice.  It's a feeling I will never forget and a moment when the Lord was more near to me than ever.  Once again, it was like God was whispering in my ear...

"I know this is hard, but here you go, sweet daughter.  Here is your boy.  Did you feel that?  He's alive and well and I love you."

Praise be to God, who in the middle of the hardest days of my life, is full of love and compassion!  He's the Giver of all good gifts!  Including little flickers of my precious son.

First Post-Diagnosis Check Up

September 19, 2014

A week after we received the news about Luke's condition, my doctor wanted us to come back for another ultrasound to see if there was any change in the amniotic fluid.  The week leading up to this appointment went something like this...

Prayer.  Lots and lots of prayer.  Our story was starting to spread, and people we haven't talked to in years were contacting us saying they were praying for us.  For Luke.  For a miracle to take place.  As we shared our story via social media, we found out that so many people were praying for us.  Hundreds probably.  Even our friends in Nairobi, Kenya were praying and sharing our story.  Friends and family from coast to coast.  It was so incredible to see the body of Christ come together and grieve and pray with us as we walked through this difficult trial.  People we knew really well and people we didn't know at all.  My mother-in-law is a 6th grade match teacher, and she shared our story with each class she had.  She told the kids that Luke would most likely not survive past birth.  She shared stories with us about how kids came up to her and said things like...

"I will be praying for baby Luke"

"My family and I prayed for Luke last night and will continue to."

She had kids who gave her pictures that said "You made us believe in miracles."

One little boy drew a duck (that looked just like a stork) carrying a little baby in a sack, and the duck was bringing the baby to us.

There was a sign made that said "Praying for baby Luke" and it was covered with signatures from children who promised to be praying for him.  It meant so much to us!

As the appointment was approaching, I was scared.  Yet hopeful at the same time.  Maybe God moved in a powerful way and we would see more fluid?  Even though I was hopeful, I knew deep down that the news would still be bad.

We were brought back to the room.  The dreaded room with the scary ultrasound machine that first revealed Luke's condition.  My mom and my sister Beth were there with Justin and I.  Doctor M came in, squirted the blue gel on my belly, and began to take a look.  As we thought, there was no increase in the fluid.  His heart rate was also considerably lower than it had been.  He looked so squished in there.  Without fluid, he's not able to move and squirm around as easy.  But, he was still alive and we were so grateful for that.  After the scan was over, Doctor M asked if we had any questions.  I did.

"With the few cases you see where babies have what Luke has, how many of them make it to term?"

"Unfortunately, not very many."

Not many?  So, Luke may not make it to term.  The week leading up to this appointment, I was fully preparing myself to deliver him in February.  With this piece of news, we didn't know what to expect.  He could pass away inside me before then.  We may have another month.  Maybe a few months.  Or maybe he'll make it until February.  We just don't know.  With that said, we are now in the "waiting period".  We wait and see how much time the Lord gives him.  We don't know how long that will be, but we trust the Lord and know that Luke's days are numbered by a sovereign God and we can trust Him now matter what or how long he gives life to our little boy.

We ended the appointment with directions to schedule an MRI at Children's Hospital.  My doctor wants to see what exactly is missing or not missing in Luke's body.  Are the kidneys there?  It's just too hard to tell due to the lack of fluid.  So, that is scheduled for Friday, October 10th.

Keep praying for a miracle, friends.  We haven't given up hope.  We serve an awesome, powerful God!  Also pray for Justin and I as we continue to struggle emotionally.  Some days are ok, some are not.  Pray that we won't loose heart and that we would continually cling to Jesus.