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!