Without Words

by Sarah

Even though I love to write and find it very therapeutic, I have not had any words to write here which is ironic because my family is literally all I have been thinking about.  I've been feeling rather heavy hearted and struggling with grasping the reality of our situation. There are flashes of time in the mornings where I wake up and for a few brief seconds have forgotten about what is happening with Luke...and then it come crashing back down around me.  Sometimes I struggle with even getting out of bed to face the day, but I try to fight against that for Luke and try and be strong for him by keeping going.  These past few weeks have been a blur. A blur of tears, time passing, friends checking in, hard conversations and just plain emotional and physical numbness.  We are still struggling to wrap our brains around what is happening, but I feel that every day, we are becoming just a bit more accepting of our situation.  Although, some days that is just not the case and I find myself in a pile of tears that don't ever seem to stop falling.

We decided to carry Luke full term and love him for every possible minute we have with him.  We feel so blessed to be his parents.  In the days that remain, we long to honor our sweet son and do many "lifetime" activities while he is with us.  Even though our hearts are breaking, we desire to live each day we have with Luke to the fullest and celebrate him each day in every way possible.  We believe that he has been given to us for a purpose and know that God is using his precious days here on earth to touch so many lives and hearts. 

We have been and continue to be so deeply touched by everyone's thoughtfulness and love they have extended to us these past few weeks.  Encouraging cards continue to fill our mailbox and our email boxes continue to light up with notes of love and support. We have received wonderful voice mails, flowers, meals, gifts made especially for Luke, invitations, prayers for healing, candles representing hope and comfort, as well as some delicious homemade cookies.  All of this on top of the loads of love and hugs from loved ones near and far. It has been so incredibly humbling to see our circle of friends and family rally around us and we are beyond thankful and completely acknowledge that we would be unable to face this challenge without you beside us. 

We love and thank you.

Sweet Baby Luke

by Sarah

That weekend following the sonogram, we named our son Luke.  It was a name we both loved and easily agreed upon.  We wanted to name him right away so that people could be praying for him by name.  (He still does not have a middle name, but we are working on that.) 

By God's grace, we had a previously scheduled regular appointment with our OB scheduled for the Monday following that first sonogram.  While the weekend was a blurr of prayers, tears and sharing the news with friends and family, we also managed to compile a giant list of questions for our doctor.  I have to back up and share that prior to becoming pregnant, my OB/GYN I've seen for years retired from delivering babies.  Her retirement required that we begin seeing a new doctor when we discovered we were pregnant.  I was initially apprehensive about this, but looking back now, I can plainly see that God brought Dr. Nichols into our lives at the exact right time.  She has been nothing short of an angel for us during this storm and we feel absolutely blessed to be under her care.

A lot of times what happens when you go see your doctor is that you are given a 10-15 minute appointment time slot, the nurse comes in and does her thing and then the doctor whooshes in and sees you for a few minutes, chats about what the nurse wrote down in the chart and then is off to see the next patient.  However, that was not our experience with Dr. Nichols on the day we needed her most.

She spent over an hour with us that sad Monday morning.  She took her white coat off and was just a brilliant woman and fellow mother sitting with us in our sorrow answering every single question we had.  She identified Luke's official diagnosis as Bilateral Renal Agenesis.  She explained that his body never developed kidneys or a bladder.  Which she described as absolutely "not life compatible" outside of the womb.  She spent time educating us about baby's development and how their little bodies begin processing the amniotic fluid through thier bodies to strengthen their systems so that when they are born, they are strong enough to survive.  In a healthy baby, their kidneys process the amniotic fluid through their urine therefore generating more fluid.  Their tiny lungs begin "breathing" the fluid in and out and this is what develops their lungs and strengthens them so they can breathe after being born.  Therefore Luke, without kidneys or a bladder to develop the fluid and keep it moving through his body, his lungs have nothing to breathe in and his lungs will also not develop at all as a result of this.  We learned that a mother's body only produces a certain ammount of amniotic fluid and the baby generates the rest as they build strength to sustain thier life ouside of their mama's belly.

I understood then why the Perinatologist who did the sonogram was asking about potential fluid leaks, as he was not seeing hardly any amniotic fluid in the womb- a key indicator of this condition.  A normal pregnancy at this point has anywhere from 5-20cm of fluid and I have 1-2cm.  Dr. Nichols assured us that Luke is in no way suffering right now because my body is doing all the breathing and waste removal for him, it's only when he's outside of my body that there will be a life threatening problem as he will not be able to do any of that for himself. 

She also shared with us that babies who do not have much fluid in the womb, tend to not move around very much as they tend to be down where the fluid is present and also have a much greater risk of passing away in-utero due to cord compression.  The fluid acts as a buffer to keep the umbilical cord safe, where as if there is not a lot of fluid there to cushion it, the risk is much greater for Luke's life line to be cut off should he accidentally press on it the wrong way or for too long. 

She provided us with the most up-to-date medical research and information on Bilateral Renal Agenesis and made herself available to us should we have any questions or need anything.  She discussed with us our options for future care for Luke and scheduled another appointment with us for the following week to talk about the future after we'd had our second sonogram officially confirming the diagnosis. 

The most important thing she did for us though was to just be present with us.  She was real.  She was honest.  She was not hopeful and I was grateful to her for her genuine authenticity even though I know it must have been difficult for her.  As a mother herself, you could see how much she genuinely cared for Luke already and how much she cares for us.  We are so thankful for that time we had with her.  She never once made us feel like we were causing her to run late, or were inconveniencing her.  The news she delivered was not hopeful, but we at least felt more informed after talking with her. We were able to hear what she was saying and had a better idea of how to begin looking at our future, how to prepare ourselves and more importantly, how to best care for and pray for our sweet baby Luke.  She was an angel with invisible wings as we are SO thankful for her.

Sonogram #1

by Sarah

August 27, 2009 was a day we had been looking forward to with great anticipation.  We were scheduled for our first sonogram- our first glimpse of our sweet baby! We were going to a specialist to receive what is called a Level II sonogram because of our age, so we were confident that the news we would receive about our baby would be accurate and detailed. We could not wait to find out if we were going to have a son or a daughter.

Sitting in the waiting room, felt like it took forever. Our appointment was over an hour late in getting started, so by the time we got into the actual room for the exam, I was feeling rather anxious. I just wanted to hear the doctor tell me that everything looked great.  Only, we did not hear those words. We were asked about losing fluid, we experienced silence from the medical professionals, we overheard whispers between the doctor and his nurse in the room who was taking notes.  The Perinatologist called in his partner to consult with what he was seeing and to see if she was able to locate something on the screen.  It was terrifying because while we could certainly sense that something was wrong, we had no idea what it was or for that matter what they were seeing on the screen (or more importantly NOT seeing).  I could see our sweet son curled up in a face down position, his tiny frame recognizable on the screen.  He looked so small and tiny; like a little peanut there.  Despite hearing his heartbeat and seeing a "well formed, strong" heart, he was not moving.

After what felt like an eternity, they turned the lights on in the room and the doctor began talking at us and telling us something was wrong with our son's kidneys and that they were not present.  He was extremely serious when talking at us and awkwardly stared at us waiting for a response.  I just stared back at him completely numb. I could hear his voice, but I could not understand what he was saying.  He rattled off the official medical diagnosis and explained that he does not like to issue it with just one exam, so he asked us to come back in a week to confirm.  Of course we agreed to return.  I had no idea what he had just said, but I knew that something serious was wrong with our son.  The doctor's level of concern only amplified my fear and panic. I could not wait to get out of the office and to the safety of our car so I could try and breathe and talk with Joe.

I remember walking out of that exam room into the hallway and encountering a beautiful pregnant woman and child leaving from the exam room directly across the hall.  She was beaming, smiling from ear to ear, obviously happy with the news she had just received and the glimpse of her baby she had just been given.  Her hopes and dreams were alive and well in her belly, while I could feel ours vanishing before our eyes. 

My sweet husband was beside me every single minute and I can only liken my experience of that afternoon leading into the next seven days as an absolute emotional tsunami.  My world had been devastated and I never even saw it coming. My dreams for our family were shattered and vanishing.  Nothing was the same.  My world stopped spinning and I could hardly breathe normally.  My concern for our son overwhelming.  Those seven days until our next sonogram may as well have been seven years.   What was happening? How did we get here? What did this mean? Where was God?

Into the Water

 by Sarah

August 23, 2009 was a big day for our family.  Every year, our church has its annual adult baptism. It's a fantastic time for our church family to see and hear about the amazing ways that God is working in people's lives and to see people proclaim their faith and publicly dedicate their lives to God and His service.

About six weeks ago, I began feeling a little nudge on my heart to be baptized. I had been baptized as a baby in my parent's church, but never as an adult nor had I publicly proclaimed my faith and my desire to serve God with the way that I live my life. It was strange because although I knew I was being nudged, I still felt a little bit anxious about stepping forward and walking into the water. Why? I guess I was wondering what people would think about me, my faith and about where I am on my walk.  But the more I thought about it, the more I knew I needed to do it for God; not for myself or for anyone else.  I know with certainty that God has been moving in my life over the past few years (especially) and that He was wanting me to do this so who was I to say no?

So I broached the idea with Joe and he shared that he too had been thinking about getting dunked. He talked about how every year he walked away from the lake where the baptisms had just taken place with a little tug in his heart about wishing he had been baptized too.  So that sealed it. We were going to be baptized together and the fact that we are expecting a baby made it even more special because technically, our unborn baby was going to be baptized with us!  We were very excited about our decision.

So three weeks ago, the big day arrived and it was a gloriously beautiful day- highs in the mid 70s, which for those of you who do not know Kansas in August...that just does not happen! The way our church does baptisms, is that we all break out into share groups and those people who are getting baptized share their story of how Christ has been working in their lives and why they are choosing to be baptized.  Those who are not being baptized are free to go to whichever group and listen to whatever stories they wish and then as an entire congregation, everyone moves over to the beach (at the lake) and watches people proclaim their belief, be dunked under the water and raised again to a new life. It's truly beautiful to behold.

Joe and I were in the same share group that was being hosted by our dear friend, Harold who is on staff at our church.  We individually shared how Christ has been working in our lives.  Joe shared more of his personal faith history, while I chose to focus my sharing more on how God has specifically been moving in my life and heart over the past three years.  I told people about how two years ago, Joe and I were not speaking to one another, and how God was teaching me to praise him even when in the midst of storms and darkness in my life.

I shared that there were days when I would just barely be able to eek out the words of praise for God during that time, not because I felt like praising him, but because I felt like it was what I was supposed to do- praise His name in good times and bad. I shared that as i said those words back then, I was hoping that there would one day be a time in my life when the praise for him would come easier and where it would feel like an overflow of the joy....and how far away that felt- then.  But now...the day of my baptism, I was able to look over, see my sweet husband Joe standing there by my side, know that we were expecting our first baby and just feeling richly blessed in life.  I felt like there was nothing I would rather do than give God glory for his amazing work in my life. I shared how while I did not know what was ahead for us, I knew He had been instrumental in getting me to where I stood that day and that I would be following His call on my life going forward into the unknown adventure ahead.

I was bursting with joy and happiness that day. I felt not only blessed,  but safe, protected and just plain happy.  We were surrounded by dear friends, old and new. We invited people we did not know into our lives and journeys by sharing our stories that morning. While I can't speak for Joe, I know that I felt a renewed sense of community and belonging to our church family that day. I was energized spiritually like I had not been in a long while. I could feel God's embrace and presence in the smiles and hugs and conversations shared on the beach and over picnic lunches. It was a new beginning for me. For us.  For our family.

Our Pastor Dan prayed a prayer that morning for everyone present and while talking about baptism, he said that those being baptized were going to be raised to a new life in Christ and that nothing would be as it was before.  Looking back on that statement just three short weeks later, its easy to see how it could not have been more accurate for Joe and I.

Just four short days after being baptized, our lives sadly changed forever.

Photos are by Grady.  Thanks, Grady for capturing the day.

This Blog...

You may be wondering if it's such a difficult time in your life, then why have a blog? But this particular blog is something Joe and I had planned to start for our family long before we received baby Luke's diagnosis.  We wanted to be able to share and remember all of our adventures as a family and include loved ones both near and far who were interested in seeing what we were up to. Obviously, we never imagined that our little family blog would begin with such heartbreaking content!  But it's what is happening with our family nonetheless..so....

We want this to be a way for friends and family who have invested in our lives and Luke's life to be able to check in and see how he's doing, how things are going for us and what we are experiencing and learning.  While we so appreciate everyone's prayers and outpouring of love for our family, we also know that it is difficult to keep everyone updated all the time, and that you may feel awkward about asking or calling or bringing up the subject of Luke, so we figured this would be a nice way for people to know how we are doing and keep up on the latest news with our little family without Joe and I sending you tons of emails or making phone calls to people who may not actually want to know what is going on any longer!

Our sweet Luke is with us for only these very few precious days, weeks and months and so it is with complete love that we begin this blog sharing with you God's blessing of our beloved first child. We invite you to share in our life and these days with our sweet son and to help us honor and cherish his presence here with us.  We thank you for reading this and being willing to walk beside us on this journey. Please always feel free to drop us a comment, a note or a phone call as it is truly a blessing to us and reminds us that we are not alone.

Much, much love to you,
Joe and Sarah