Consult with NICU Team

November 21, 2014

I realized we are going a little out of order with a few of these posts, but hey, that's ok!  My goal for this blog was to at least get things written down to remember all that we went through and the emotions we felt as we went through them.  So, here goes our NICU story...

As things progressed with Luke and we realized that he was going to make it further along in the pregnancy, my doctor thought it would be a good idea for Justin and I to meet with the NICU doctor at Riverside to get a better idea of exactly what would happen before, during, and after Luke's delivery.  Part of the fear I was dealing with had to do with the whole not knowing what was going to happen with him when he was born.  What did that look like?  What would he experience?  What type of care would he receive?  What would it be like for me?  I've never had a C-Section so the whole thing was, and still is, pretty nerve wracking!  Justin and I's biggest concerns when thinking about Luke's delivery is...

"Will he suffer?"

"Will he be in pain?"

"Will he be comfortable?"

Those were the questions we really wanted answered.  We hoped they could answer these for us.

It was time for us to go into the meeting.  I was nervous because I knew this would be a hard thing to do.  It was necessary for us to get as much info as possible, but I dreaded talking through these difficult things with the doctors.  The doctor escorted us into a conference room, and the first thing I noticed were boxes of tissues on the table.  Oh great.  This is a sign of what's to come.  This is a room where doctors meet with grieving parents and tell them bad news.  This is a room where sad things happen.  I reluctantly sit down and we begin talking.  The first thing the doctor asks me after she introduces herself and the nurse practitioner was...

"Do you guys know the gender of your baby?"

"Yes, it's a boy."

"Ok great.  Do you have a name picked out?"

"Yes, his name is Lucas Kent and we also call him Luke."

"Awe, I love his name."

I loved the fact that she wanted to know his name before we did anything.  He's my boy.  He's real and he's alive and he has an identity.  During the whole appointment, she referred to him as Luke :)

The bulk of the meeting was spent talking about the care Luke would receive once he is born.  We focused on that more than anything, which was great for us.  He will be born via C-Section due to the fragile nature of his body.  Potter's Syndrome babies, due to the lack of amniotic fluid, are very fragile.  To go through a vaginal delivery could be very dangerous and he would most likely die during birth.  He's going to be delivered about 5 weeks early to avoid something going wrong later in the pregnancy.  If we were to wait and deliver closer to my due date, the chances of the cord being clamped and cutting off his oxygen supply goes up a lot.  We don't want to risk that.  

Here is the "short" version of what will happen with Luke after he is born.  As soon as they pull him out, he will be cleaned up, just like a normal healthy baby would.  I love that.  I want them to treat him like they would any other child.  His hair will be washed.  He'll get a cute little hat.  He'll be wrapped up in a baby hospital blanket, just like every other baby you see.  Because of his lungs not developing, he will struggle to breathe as soon as he's born.  The NICU team will give him medicine that will keep him comfortable so that he won't suffocate.  I had horrible thoughts of him laying there suffocating.  They reassured me over and over again that he will NOT suffer.  There are various things they will do for him so that does not happen.  They can give him oxygen in his nose.  They will give him drugs under his tongue that really calm him and allow him to not feel pain.  We were so relived to know he would be taken care of the moment he leaves my body.  He won't hurt.  He won't suffer.  He will be loved and cared for.  Justin will be with him every second while they stitch me up. As soon as they clean him, give him meds, they will wrap him up and lay him directly on my chest.  I can't wait for that moment.  I can't wait to hold my precious little boy and gaze at his little face and kiss his tiny cheeks.  It will be a moment my mommy heart will remember for the rest of my life.  As soon as they are done closing me back up, the three of us will go to recovery.  No nursery for Luke.  He will stay right with us the whole time.  After recovery, we will then go to a private labor-type room where our family and close friends will be waiting.  That's where our family will meet Luke for the first time.  He may or may not be alive at that point.  We just don't know how long we will have.  He could live minutes, or up to a few hours.  Whatever time the Lord gives us with Luke, we will cherish and treasure each moment.  Everyone we love will be in that room together, loving Luke and holding him and looking into his beautiful face.  When Luke does pass, there is an organization that will be there taking photos of him, us, him with us, with our family, etc.  Now I Lay Me Down To Sleep is the name of the photography group and they do this free of charge for families who loose babies.  The Chaplain of the hospital also sat in on our meeting, who was very sweet by the way, and she told us that she will completely take care of getting his foot and hand prints for us, a clipping of his hair for us to keep, and will have a plaster-type kit to use to get his hands and feet set into a mold. They will make up some type of memory box for us to keep.  That was neat to hear that we won't have to worry or stress about getting all of those things done.  

As hard as the meeting was, we walked out of the room that day a little less burdened.  We feel that with each hard thing we face regarding his delivery, we become a little less fearful.  They say that knowledge is power.  I think that's true.  The more prepared we are for that day, the less fearful we can be.  We are so thankful to the Lord for allowing us to talk through those difficult things.  The doctor we talked with was so kind and so thoughtful and reassured us over and over again that her job was to give Luke the best care possible and she would do just that.  It's good to know that our son will be in great hands, but ultimately, he will be in the mighty hands of his Creator, the Great Physician, the Great I Am, the Almighty, the Prince of Peace.  No better place than that.  

My turn...Reflections from a Father

'Surprise! I have been thinking and wanting to post for a while, but haven't been able to come around to actually doing it. Well, here it is. :) My words undoubtedly are nowhere near as profound and eloquent as Katie's, but I wanted to share some of my thoughts recently.

I am going to organize my thoughts in three categories for the sake of flow.  If not, I know myself and it'll be a jumbling mess in which you'll abort reading and give me a "well bless his heart, he tried." In light of the season of Advent, and drawing from recent conversations with various people in the midst of painful days and nights, firstly I'll discuss how it is no accident our most painful time is in the middle of this celebratory season we know to be Advent. 

1. Our Advent 

     Advent means, the coming. Christ came to rescue us even though we do not deserve it. His rescue plan was to send His son, knowing full well he'd have to die to preserve this plan that was set into place before the foundation of the earth ("Blessed be the God and Father of our Lord Jesus Christ, who has blessed us in Christ with every spiritual blessing in the heavenly places, even as he chose us in him before the foundation of the world, that we should be holy and blameless before him. In love he predestined us for adoption as sons through Jesus Christ, according to the purpose of his will

-Ephesians 1:3-5) God knew His Son would suffer, but suffer not just for sufferings sake, but to eradicate the sin that infiltrated the world, to remove it that WE could live.  That's grace. In a way, our season of advent is similar. Don't get me wrong, we aren't God, not even close, but the pain we feel is not dissimilar to the pain our Father had when His Son was being sacrificed. Katie and I in times of deepest sadness cling to each other, because we feel the pain of the other. It's in times like that, we also take comfort in knowing we can cling to Him who drew us. ("Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need." -Hebrews 4:16). 

2. Glimpses of Grace 

     It's easy to fall into the woe is me trap. Our overwhelming sadness moments sometimes come in the times when we reach for the grace that is not yet supplied. Have you ever been so hungry at Christmas time and the cookies just came out of the oven and you reach for one only to burn your finger or tongue? Those cookies are the grace supplied to us, but it's not ready yet, it needs time to cool, but we reach anyway knowing full well they aren't comfortably consumable. We are only supplied the grace for the moment, nothing more. A verse that I love, and that I put on a bracelet to help me focus on what we know to be true is 2 Corinthians 12:9-11 which says "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong." Weakness draws us closer to God, and many times Katie and I are reminded of this as we are in our darkest moments. We'll look at each other and say how in our weakest movements are when we draw from the well that is living water the most ("Jesus said to her, Everyone who drinks of this water will be thirsty again, but whoever drinks of the water that I will give him will never be thirsty again. The water that I will give him will become in him a spring of water welling up to eternal life."-John 4:13-14)
John Piper has an advent book that we read every year and an entry on December 3rd of this year titled "Draw Near to the Savior" in which he states "One of the things pleasing in Gods sight is that His people keep on drawing near to Him forever and ever. And so He is working in us this very thing." May He continue to work in us and draw us through our season of grief and display His grace daily, no more than needed for that moment, and may we trust in the sufficiency of that grace. When we remember this and reach for that cookie when and only when it's ready, may we savor the sweetness that is grace.
Ok, before I ramble on, there is application.  These truths are all well and good and can be recited, but if you are like me, I need to see it sometimes.  I am going to highlight just a FEW of many glimpses God has allowed us in on. 

          a. As with most pregnancies morning sickness was prevalent early on.  It seems like non stop uncomfortable nausea and "car sickness" as Katie explained it.  On that day, September 12th, when we learned of Luke's condition, Katie looked back and realized, the sickness had dissipated. That's grace.
          b. Our doctor told us that the likelihood of Luke making it to term, even to the point he is currently would be slim.  This diagnosis would mean neither Katie nor I would get to experience his movements, kicks, growth, etc.  Each week with each checkup, his heart is strong and it is frequent Katie says he moves around even in the confined space he is limited to. I too have been able to feel that movement.  He's a fighter, that's grace.
          c.  I'll be honest, throughout this ordeal, I've had many clusters of weeks where reading my bible has been less than desirable, many times its in those moments where the sadness has lessened and we seem to be "OK."  Sometimes its in those darkest moments that we are closer to Him and as I referred to earlier, yearning for the living water, dehydrated to the point where sin invades. He knows my heart and my tendencies, He knows when I'm "OK", I'm not yearning. Just as God doesn't leave us there when we fall, He doesn't leave us at "OK" either. That's grace. "No man shall be able to stand before you all the days of your life. Just as I was with Moses, so I will be with you.  I will never leave you or forsake you." - Joshua 1:5

3.  What lies ahead...
    We have been given the grace so far, and will continue to be given grace for each moment that passes from here on.  We have some plans to make, arrangements to get in order, and many more decisions that will affect our lives in the coming month. We try to let each moment  of grace encapsulate us, protect us from the hurt each decision puts us through. We ultimately know the faces of those around us hurt for us, and thus have seen the kindness and generosity of many these past months and are confident there will be more. For this we cannot be more grateful. As the years pass and I wholeheartedly believe God has children for us in the future, whether that be biologically or through adoption, we'll look back on our Lucas and always know he was our first and precious boy. You know, you sit in the pews as a kid and through the drawings of batman and the anticipation of your favorite show that comes on just as church is ending and you hear the pastor speak of heaven and in your little head think, yeah I like that, but right now, this batman drawing is pretty sweet.  It's moments like now at 32 that I hear him, and that longing for the eternal state where not only will we be reunited with those we cared for, but that will pale in comparison to the worship we'll get to experience right along side them in eternity here on this recreated earth. I get it now, I long for that.  Luke will  have a body, with kidneys and a bladder, I'll have ears to hear the majestic chorus of angels singing, my sin will no longer weigh me (and you) down, not to mention I'll draw the most perfect batman ever!

In closing, its this last paragraph that allows us to hope, to move through the dark days. The days we reach for that still cooling cookie, the glimpses of grace we sometimes overlook and not hear the pastor encouraging us to hold fast to what's to come, please pray we avoid these pitfalls.  Please continue to pray for us that as we walk through this, that we aren't the only ones in the fire ("Did we not cast three men into the fire...but I see four men unbound, walking in the midst of the fire, and they are not hurt; and the appearance of the fourth is like a 'son of the gods.'" -Daniel 3:24-25) God not only gives us these trials to strengthen us, but he walks in the midst of the fire with us. Our prayer is that, as this account describes, many see the fire all around us, but we hope they see more than Justin, Katie and Luke in it, we hope Christ is apparent and that we would make more of Him.  

OSU Basketball Game With Luke

Our dear friends Robb and Wendy Hildreth gave us an early Christmas gift a few weeks ago!  They gave us tickets to an Ohio State basketball game.  We were very excited to take Luke to the Schott and experience a game as a family of 3!  They played Marquette and won, which made it even more fun!

As I looked around at the various families at the game, I couldn't help but be somewhat sad as I realized we wouldn't be able to take Luke to any games as a little boy.  Yes, he was in my belly, but he wouldn't be able to sit in the chair next to us and cheer loudly with us.  I had to hold back tears some, but through that I was thanking God for another fun thing for us to do with our son.  I'm sure he'd be a huge OSU basketball fan!

Here are a couple pictures we took after the game inside the arena...

Thanks Robb and Wendy for the tickets!  We had a great time!

Luke Does Chicago!

The weekend of November 14, the three of us took a weekend trip to Chicago!  The first time Justin and I went to Chicago (Fall 2010), we fell in love with the city!  I grew up close to San Francisco, so big cities are my thing!  Justin grew up in a small town in southern Ohio, so he wasn't as familiar or comfortable with the busy, crowded, hectic city life!  Our first time there, we vowed to one day take our children there so they could experience all that we had.  We loved how it was big yet friendly.  Busy yet orderly.  Crowded yet clean.

When we found out about Luke's condition, taking him to Chicago was one of the things we really wanted to do!  We wanted to be with him in our favorite city.  So, we planned a weekend.  We looked at our calendar and decided to go the 14th, 15th, and 16th of November.  Our weekends are typically very busy, especially with Justin's job, so we planned the trip rather quickly and went the first available weekend we had coming up.

The last time we went to Chicago with our friends, Robb and Wendy Hildreth, we got up very early that Friday morning and arrived in the city by 9am local time.  So yeah, that meant we were out the door by 4am Ohio time.  Early yes, but worth it to arrive and still have your whole day ahead of you. We did the same thing this time.  We left our place by 4:15am and arrived in Chicago by 9am.  We had a fantastic breakfast at Bongo Room (so good!) and went to Shedd Aquarium later that morning.  We hadn't been to the Aquarium yet, so we knew it was a perfect place to take Luke.  Everyone raved about how great Shedd was.  We were really excited to go!  It did not disappoint.  It was amazing!  Here is a pic of us outside of the aquarium.

One of our favorite restaurants to visit while in Chicago is called Hot Chocolate.  We try and go there every time we are in the city.  It's fantastic!  Yes, they're known for their hot chocolate, but the food is out of this world!  We went there for brunch the morning we left.  Here is Luke and I outside the restaurant before heading home...

Overall, we had a wonderful weekend in Chicago, despite how cold it was!  We were so glad we got the chance to take our sweet boy there and experience some new, and some old favorite, things with him.  We are thankful to the Lord for His provision and kindness in allowing us to make it there with him!  I'm sure Lukey loved Chicago, just as much as his mommy and daddy!

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.

A Church Service

Sunday, September 14, 2014

The day we found about our boy's potentially fatal condition, our pastor and his wife were by our side.  They came to Riverside Hospital to pray with us, and they were at my parents house later that evening to cry, pray, and grieve with us.  I can't tell you how much that meant to us.  We didn't know what we needed at that time.  It was just enough to have them there and sit with us as we cried.  We are beyond thankful for Lee and Whitney Davis.

The next day, Lee sent out an email to the entire church family informing them about our devastating news.  The email was also sent to us, and it was surreal reading it.

"Is this really about us?  Is this horrible news real life and are we really going to loose our baby?"

When we arrived at church the next morning, we were immediately greeted with hugs, peoples tears, people sharing truth with us from God's Word.  We felt loved right away and knew we had an amazing support system around us.

As Lee started the service, we told everyone that his normal sermon in Genesis was going to be put on hold.  He felt that with all that happened with us over the weekend, he couldn't simply pick up where he left off.  His "sermon" that morning was from Romans 8.  He directed the entire sermon to Justin and I.  He used our names.  He looked directly at us as he spoke and shared God's promises with us.  He also spoke to the church body as a whole; how to respond when things like this happen in the body.  It was gut wrenching, yet exactly what we needed.  To be honest, I was not looking forward to hearing a sermon from Genesis.  Sorry Lee!  I needed to know that God loved us, that He was holding us up, that He would never let us fall.  That's what we heard.

At the end of Lee's sermon, he had Justin and I, Justin's parents, my parents, and my sisters all come forward.  The elders prayed over us.  After that, he had the entire church family come forward to love on us.  So, one by one, everyone in attendance that morning made a long line and came forward.  Each person hugged us.   Grown men that I've never seen shed a tear had tears running down their face.  Each person whispering sweet words in our ears....

"We love you.  We are so sorry."
"If there is anything you need, call me."
"God has you.  He has you."
"Cling to Jesus."
"We are praying for a miracle."

And on and on.

Each person not only greeted Justin and I, they greeted our entire family.  I've seen my Dad cry one time in my 33 years of life...and it was a kidney stone.  That morning was the second time.

A couple days later, our family was reflecting on that service.  My sister Beth said...

"I will never forget that service.  What love our church family displayed and how Lee changed his entire line up just so that he could minister to us....I'll never forget it.  That was special."

Exactly.  I'll never forget how loved I felt that day.  I'll never forget the faces that looked back at me, tears in their eyes, saying how much they loved us and were there for us.  I knew that we had a great support system at NorthPointe Baptist Church, but now I KNOW that we are NOT alone in this.  The body of Christ came together in a very special, real, raw way to help us carry this load and to not let us suffer and grieve alone.

NorthPointe Baptist Church, we love you.  We are so thankful for your love for the Savior which overflows in your love for Justin and I.  Thank you for walking through the fire with us and reminding us to keep our eyes on Jesus, the Author and Perfector of our faith.

The Day That Changed Our Lives

September 12, 2014

Today is the day we go to my regular OB to check on baby Luke and see what's going on with this whole lack of fluid thing.  My appointment is for 9:40 that morning and my mom is going with me.  Justin had a busy day ahead of him at work, so he didn't come along this time because we were sure everything would be fine.

The nurse calls us back for the ultrasound.  I lay down and she applies that freezing cold, blue gel across my belly and begins.  She's quiet.  She does confirm that yes, the fluid around the baby is low.  Really low.

"Let me go get Dr. Mellilo and let him take a look."  Not a good sign I thought to myself.

The doctor comes in, takes ahold of the doppler and is squinting at the screen.  I can tell by the look on his face and his lack of conversation that something is wrong.  He lets out a long, slow breath.

"It looks like there is virtually no fluid at all."

"Is that bad?!  What does that mean?!"

"Well, it could mean several things.  What I think I'm seeing is, is a problem with his kidneys.  Kidneys produce urine, and that urine from the baby is what makes up the fluid around him."

"Can that be fixed?"

"I'm not sure yet.  I'm going to have you to go Riverside Hospital and see the high risk doctor over there.  If it is what I think it is (lack of kidneys), it's not good Katie."

I loose it.  So does my mom.  This can't be happening.  We've waited for 5 years for this child.  God wouldn't take him from us.  Right?

We get an appointment made for a few hours later.  We go outside and sit at the very same table we sat at when Megan and Aric found out about Blake's condition (spina bifida).  It was dejavu.  Weren't we JUST doing this?  Sitting here crying our eyes out, calling everyone we knew to start praying?  I called Justin at work and told him he needed to come ASAP; that there was something really wrong.  Mom called my dad and told him, and he rushed over as well.  We called my sisters and my in-laws, and everyone started making their way to Riverside Hospital.

Finally, it was time to go see the high risk doctor.  We fill out paper work and sit and wait for our turn.  In the waiting room is my parents, my in-laws, my sister-in-law Callie, my sisters Megan and Beth, our pastor and his wife, and my dear friend Paige.  We all sit in a circle and pastor Lee prays.  We beg God for everything to be ok with Luke.  We were confident it would be ok.

They call my name.  Justin and I go back.

The nurse, Carol, begins the ultrasound.  We can see our little guy on the screen.  He had hiccups.  She's pointing out that the brain, heart, spine all look perfect.  I'm patiently waiting for her to say, "Oh, ok there are those kidneys!"  She doesn't ever say that.  She can't find them.

"He's still so small, it's just hard to say.  I don't see them though.  Or a bladder."

After several more screen shots and various views of his tiny body, she ends the scan.  She tells me she's going to go get Doctor Fox to come in and take a look.  A few minutes later, he walks in.  He looks closely at what pictures she took of Luke and turns the machine off.  He then says...

"Let's go into my office and talk."

Oh God, no.  We know what this means.  This isn't good.  Justin breaks down.  I hug him and say...

"We don't know for sure yet!  We don't know for sure yet!"  Tears streaming down my face.

We walk out of that room and make our way, with our parents, to his office.  I suddenly can't catch my breath.

"I can't breathe...I can't breathe!"  It felt like the oxygen had been sucked right out of me.  I was so scared.

We walk into his office, sit down, and he begins to explain what was wrong with our precious boy.

"Your baby, from what I can see, does not have kidneys or a bladder.  Because of this, and because kidneys make urine, he is unable to produce the fluid that should be around him.  Because there is no fluid, his lungs are unable to develop.  Amniotic fluid is what allows the lungs to develop.  Unfortunately, your baby would not be able to survive once he is born."

I had never experienced pain in all my life, like what I was feeling at that moment.  Justin wept.  I wept.  Our parents wept.  The doctor went on in more detail what exactly was wrong and how there was nothing that could be done.  He was very gracious and kind even though he was delivering such heartbreaking news.  Our baby boy would not survive.  How could this be happening?

The thoughts that ran through my mind as I sat there was:  I can't do this.  I can't survive this.  I'm not strong enough to do this.  I can't imagine delivering my son for him to live but mere moments.  How am I going to get through these next 5 months knowing he's not going to live, and have to deliver my child and hand him over to be put in the morgue?  God, hold me up, I'm going to collapse.  God, please be near.

We left the doctors office and joined my sisters, Paige, and Callie in a separate waiting room they were in.  We all just wept together.  Wept for our little boy.  My Dad prayed.  Now what?  Where do we go from here?  We decided to go back to my parents house and be together there.

On our way home, we stopped by Worthington Christian (where Justin works) to let his boss Kevin know our news.  We told him and he stopped and prayed with us and told us how sorry he was.  We are beyond thankful for Justin's boss and all of those around him there.  A true blessing from the Lord.

We got to my parents house, and Lee and Whitney came to be with us (our pastor and his wife).  We shared more details about what Dr. Fox told us, and they cried with us.  I asked Lee if he'd be willing to officiate my son's memorial service.  Did I just ask that?  Is this truly real life?  He said of course he would.

As Justin and I went home that night, we were still in shock I think.  Numb.  We walked in our front door and immediately see reminders of our little boy. An empty guest room, ultrasound pictures on the fridge, pregnancy journals, the clothes we bough just a few days before, a sign in our closet I made for Justin that said "You're going to be a daddy!"  We broke down.  What do we do with all this stuff?  Throw it away?  Store it?  We left it alone.  We didn't want to "put away" our boy.

We finally made our way to bed, after a long emotionally draining day.  My eyes were swollen from all the tears that day held.  Before we laid our heads down, Justin prayed.  He prayed for Luke, for a miracle.  He prayed for our hearts, that we would make it through this.  He prayed for sleep, that we would find sleep that night.  I slept for a little while.  I awoke around 2am, and sat on the edge of my bed and just sobbed.  I cried out to the Lord.  I expressed my anger, my hurt.

"Father God, not my little boy.  Please not my little boy.  I want him here with me.  I want him."

Justin woke with me and we sat on the edge of our bed, and cried.  We cried for a good 90 minutes together and held each other.  I needed Justin now more than I ever had in our 6 1/2 years of marriage.  I needed my Savior now more than I ever have in my life.

We made it through that first day.  How would we survive the next?  We promised each other that we'd take one day at a time.  That's all we could do.  When that seemed too hard to face, we started saying to each other "moment by moment."  When one day seemed too hard to face, we told ourselves we'd face things one moment at a time.  Literally.  Maybe that's a tattoo waiting to happen? Moment by Moment.  Shhh, don't tell my dad that.

Friday, September 12, 2014.  The hardest day of our lives.  The saddest.  Yet, the one that will forever mark our lives as the day that brought us closer than ever to Jesus.  To each other.  The day that precious Lucas Kent changed our lives.  We love you, sweet boy.

Boy or Girl?!

This day was huge.  Not huge as in "ginormous", but huge as in "I can't believe we will find out our baby's gender" huge.  What would be an exciting yet typical ultrasound for the normal couple who had a couple kids, who didn't struggle with infertility for the past 5 years, who got pregnant at the drop of the hat, wasn't a typical ultrasound for Justin and I.  I could hardly sleep the night before.  My mind was racing and my stomach was flip-flopping each time I thought about it.  Heck, I even had one of the biggest throw-ups on record in the Starbucks bathroom before hand.  So much for that iced coffee getting baby active and moving!  The appointment was at 11am and we had our entourage of friends and family coming along.  To say we were excited would be the understatement of the century.

It's time.  We all walk into a dimly lit room with a huge flat screen TV so that everyone has a great view of what the tech is seeing on her screen.  I am laying on a super comfy bed-like table and Justin is sitting next to me, tenderly holding my hand as we await the news: boy or girl?!  The tech begins the scan, and it seems to be taking a LONG time to find those tiny parts.  A long time.  Like, 40 minutes long.  She then says something that made my heart skip a beat.

"Have you had an ultrasound yet?"

"Yes, we have.  At 8 and 10 weeks."

"Ok.  The reason I'm having a hard time finding the right parts is because the fluid around the baby is pretty low."

"What does that mean?"  {my heart is now beating out of my chest}

"Well, it could mean several things.  Your doctor would need to determine that."

"Ok."

At this point, I can't really focus and enjoy the ultrasound because I am overcome with fear at what this could mean.

Finally, the tech found those little parts she'd be trying to find: IT'S A BOY!  Justin and I were beyond thrilled.  We both were secretly hoping it was a boy.  But, in the midst of happy tears, my heart was pleading with the Lord, "God, please let everything be ok."

We all went to lunch at Panera afterwards, and talked about what life would be like with little Lucas Kent (Luke) in our lives.  But, I could hardly eat my lunch as I was really worried.  Everyone reassured me things would be just fine.  Would they be?

"I'm sure it's an easy fix!"  I wanted to believe them, but had a sickening feeling something was really wrong.  I called my OB right away and scheduled an appointment for 3 days later, Friday the 12th at 9:40am.  I felt better having made the appointment, and felt we could move on with our day.  So, we went to Carter's and dropped some cash on a bunch of adorable baby boy clothes that Luke would wear.  We talked and envisioned him in them.

September 9th, 2014 was the day that started this trial.  What we thought would be a day of celebrating and daydreaming of our little boy, was marked, for me, with fear, worry, concern, and prayer....that the Lord would protect and cover our son with His grace, protection, love.  I knew that whatever the cause of this lack of fluid around him couldn't be a good thing, but we knew God was in control and He was sovereign and we could trust Him no matter what.  Right?  That would be put to the test in 3 short days.