Monday, December 12, 2011

The Surgery that Wasn't Meant to be...

So, as many of you know, Owen was scheduled to have bladder surgery last Tuesday. And, as many of you also know, the surgery did not happen.

I wish I could give you a complete, thorough explanation, but I cannot. The reason? Know one on this Earth knows. However, I am quite confident that our loving Creator held a far greater plan on Tuesday, December 6.

Owen's plan for surgery was to take about 4 1/2 hours. The plan was to take him back, have the urologist look into his bladder via camera (cystosocopy) and then allow the general surgeon to place his g-tube. After the g-tube was placed he would come talk with us and the urologist would begin the bladder surgery.

After we sent Owen back we took our places in the waiting room. I noticed several families being called to the welcome desk and overheard the receptionist tell them that their child's surgery had begun. She never called our names. After over and hour I told Michael I was a little concerned because she hadn't called us. He assured me everything was fine that they don't always have to do that. So, about 30 minutes later our name was called to go meet with our doctor. No surprise here, it was part of the plan.

We were taken back to a little room a waited a few minutes. Finally, the door opened, but it wasn't the surgeon we expected. It was the urologist. (Keep in mind we were thinking he was operating on our son at the time...) His words began like this..."Okay, so Owen is fine..." My heart sank. It was evident from his tone that something wasn't right. Then, walks our other surgeon. So where was Owen?!?

The doctors went on to explain that the surgery had been cancelled. When Owen was intubated and anesthesia was administered his heart began beating very quickly, and having a spontaneous rhythm. He was having a type of SVT called atrial tachycardia. They tried many things to stop his heart from beating so quickly, but his blood pressure began to bottom out. After several minutes, the operating team decided it was simply not safe to move on.

This has never happened to Owen. He has had 3 surgeries in this life, and 2 in the womb. Never, ever had an issue. Simplest answer: a reaction to the anesthesia. By the time Owen made it back to recovery and we were allowed to see him he was doing fine, with a perfect heartbeat and breathing on his own.

Owen's doctors were clearly shaken about what happened. He was sent to the cardiac floor for continuous heart monitoring for at least 24 hours. The results: A PERFECT HEART. :) The doctors did extra testing using an EKG and ECHO to test the shape and valves of his heart. Again, PERFECT.

Now, I didn't get to share the wonderful, amazing, most wonderful part of this "pretend" surgery, as we like to call it. :)

Owen's urologist was able to perform the cystosopy, as it was the least invasive part of his surgery. He used a camera to get an inside peek of Owen's bladder and ureters. And you know what? He was impressed! He was very pleased with what he saw and blessed us with the news that this surgery may have been unnecessary. However, should he actually need the bladder surgery, he can perform it at the time of transplant. So all the prayers for Owen's bladder have clearly been working. :)

I firmly believe the Lord was calling out to us last Tuesday. Never, never in the course of Owen's life (before birth as well) has a doctor been "pleased" with his urological system. We have prayed that Owen's bladder would heal and stretch, and we have seen His hand at work! I was talking with another kidney Mom before Owen's surgery and we were talking about how evident the Lord's hand has been in Owen's life. I remember saying that it's possible the doctors could go in and see a perfect bladder before his surgery. I think I said it, but I'm not sure I really, really believed it. Well, He's got my attention now!

Thank you, thank you for your prayers for our family and Owen. We were completely overwhelmed with the phone calls, texts and messages we received on Tuesday. We are forever grateful that so many of you love our family and are storming the gates of Heaven for our boy!

Continue to lift up Owen and be in agreement with us that his healing is coming. Continue to believe with us that his bladder will be healed at the time of transplant. After some extra heart testing and meetings among all doctors, we should have a transplant date. There was talk of moving up the transplant date, but it will need to be worked out with our donor and doctors and apparently scheduling isn't easy! Just be in prayer, that whatever the date, we will know that it is blessed by the Lord and He is guiding every decision made during this time.

Resting with Mommy before going down to surgery

We got to ride on the stretcher together. :)

Waking up after "surgery". Not happy about the 2 IVs!

Back home and back in action! He really wants to crawl!

Yet again, another early Christmas gift given by Daddy. Who could resist that smile?!

A happy, little, miracle!

Tuesday, December 6, 2011

A Change of Plans

So, today's surgery didn't go quite as planned....as in there wasn't a surgery.

After about 1 1/2 after we sent Owen back to surgery we were called to meet with one of the doctors. We were expecting this, as the plan was to place the G-tube first (about an hour procedure) and meet with that doctor as the other surgeon began working on Owen's bladder.

Apparently as Owen was sedated his heart began going into unacceptable rhythms, called SVT. His heart rate would jump from the 120's to the 200's in seconds. His blood pressure was also bottoming out to the 40's/20's. So, the doctors tried a couple of different things, but eventually decided it wasn't safe to continue with the procedure.

However...the urologist was able to do the bladder scope (cystosocopy) and take a peek into Owen's bladder. If you've read before, you know that this bladder surgery was necessary to prepare for transplant, as he felt Owen's bladder was not trustworthy and far from being ready to accept a new kidney.

Well....are you ready?? I'll just go ahead and quote the doctor, as he said it best....

"I would transplant Owen tomorrow if everything were in order and ready to go."

There is a reason this surgery didn't go through. I firmly believe God intervened to either:
a. Show us there is problem with either how Owen's heart handles anesthesia or he has some kind of reaction to to the anesthesia.
b. Owen's bladder is being HEALED and will not need surgery.

(I prefer option b.)  :)

However, we don't know anything yet. Owen has been moved to the cardiac floor for 24 monitoring that's a bit more advanced than the regular. Of course, his heart rate has been nothing less of perfect since coming off anesthesia. :)

Could this have been a fluke? Yes. Could Owen need a different type of anesthesia? Yes. Could there be an issue with how Owen's heart handles anesthesia due to his kidney disease? Yes. Are we all confused? YES.

So in all, it really stinks that Owen went under anesthesia "for nothing" and feels yucky. It stinks that he still has that pesky NG tube. BUT...it's wonderful that he did not have a bladder surgery that he may never need!

I knew God worked in mysterious ways, and I knew He was wanting to show himself to me, and I think he's got my attention now. :)

So basically, we don't know how long we will be here. We don't know what caused the issue during transplant. We don't know if they will move the transplant date.

What do we know? We know that God is good, God is powerful, and God is here. Owen urologist said he can perform today's scheduled surgery at the time of transplant.....however he may not need it after all. :) He was quite pleased with the change in his bladder that he saw today.

So, friends, I ask you to continue to storm the gates of Heaven for Owen. We've seen that God is trying to tell us something today. We may not know exactly what it is, however we have to stop and listen. Pray that this heart rhythm was a fluke, and just God's way of stopping a surgery He didn't plan for Owen to have. Pray for wisdom for our doctors. That they can develop a plan that will benefit Owen best and that we will feel comfortable with.

Thank you so, so much for all the prayers and encouragement we have been receiving today. It's almost overwhelming when we see just how many people are lifting Owen's name to the Lord. Keep praying...He's obviously listening! :)

"You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the LORD will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the LORD will be with you.’” 2 Chronicles 20:17

Surgery Time

We watched our son be carried away to surgery about 30 minutes ago. We were able to be in the "holding room" with him until the doctors were completely ready. I don't think there are words to describe the emotions running through my body. There are too many to process at the time.

I can say, that with great fear, comes great faith. As much as I wanted to push through those doors and run down the hallway that my boy was travelling down, I was okay. Okay, in knowing that our doctors are well trained and skillful,but more than okay in knowing that someone else is directing this surgery. The One who carefully knit each cell together in Owen's body and planned his life in perfect order to glorify a God who saves.

Owen's surgery should be starting soon. It is a little after 8am (eastern time). Please continue to pray for wisdom for our doctors as we have unfortunately been reminded several times about just how "complicated" Owen's anatomy is. Pray that our doctors' hands will be blessed by The Great Physician and Owen's surgery will go quickly, without complications and a fast recovery.

The surgery is scheduled for 4 hours and 24 mins. They are planning to extubate him following surgery and give him a shot similar to an epidural that should relieve pain for about 8 hours. He will also have a morphine pump and scheduled Tylenol. Please pray that Owen will not be in any pain, as he has already had a difficult time realizing he isn't home and there have been so, so many doctors and nurses coming in to examine him, he was quite fussy before surgery began.

"But He said to me, 'My grace is sufficient for you, my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may work in me."
                                                                                                                          -2 Corinthians 12:9

I am weak. Especially today. But, I think God needs me to be weak. So that through my overwhelming weakness, I will see Him work. I will look to Him and give Him all. And through this, I will see with my eyes what my heart longs for. I will see faith that can move mountains and an everlasting love that holds my sweet baby tighter than I ever could.

"He gives strength to the weary, and increases the hand of the weak." Isaiah 40:29

Saturday, December 3, 2011

Two Days and Counting...

Although I am living in a complete state of denial, Owen's surgery is quickly approaching. I am having a hard time with this one. Owen's last surgery was when he was 2 months old. I can still remember every. single. second of walking him down to the OR, waiting the 5 hours that felt like 5 days, and then finally seeing him for the first time after surgery. It is absolutely painstaking to walk your sweet child down to an operating room and trusting a team of strangers (however very well qualified) to protect your child from harm as they operate on his tiny body. Simply put: it's gut wrenching. It rips apart my insides and my heart bleeds for my baby as I would give anything in the world to take his place.
It is during this time that I must fight hard to not let satan creep into my heart. It is so easy for me to fall into a dark sadness, one that aches for my baby and also, for a life that I had planned, but one that I know deep down wasn't meant to be. I fall into the "why my baby?" "why my family?" I can get jealous of families who's biggest worry is an ear infection while my son's life is supported by a machine, until he receives a transplant. It's easy to fall into the trap satan so cleverly plans out for me.

So, on top of the necessary prayers I beg you to pray for my son and his surgeons, I also ask for prayers for myself and Michael. Pray that our hearts will remain steadfast, chasing after the Lord and praising Him for this cross He has chosen us to bear. Pray that as we bear our cross, we will obediently honor and serve the Lord who has chosen to bless our lives with Owen. Pray that our faith will be contagious! Pray that we will resonate the Lord's love and His words will be on our lips as we spend our upcoming time in the hospital.

But of course, I plead with you to have Owen on your heart this Tuesday. His surgery is first thing Tuesday morning. If things are running on time (a rare occurrence) it should begin around 7 am (eastern time). We have been told to expect it to last around 4 hours. Pray that the Lord will guide the surgeons' hands, that our surgeons will be blessed by the Lord and will know that their patient is a precious, child of God and represents the mighty power of a Lord who continues to work miracles.

I will update the blog as much as possible, for those who do not have facebook. Please know that we covet your prayers and are so blessed by the outpouring of love we have felt for our family. This trial is far from over, and I know I'm not finished growing. The Lord has worked greatly in our lives through this and we have truly seen the 'goodness of the Lord in the land of the living!'

Our confidence remains in the Lord and our faith will not be shaken. Going through a journal I kept during my pregnancy, I found a folded up piece of computer paper. Not long after we found out about Owen's problems I began searching for miracles performed in the Bible. I began making a list and got up to about 48 miracles (a few were repeated). I can clearly remember taking this paper (along with a stack of others in which I wrote verses to use as prayers and encouragement) to every single appointment I had until Owen was born. It is highlighted, underlined, "starred" and worn out, but I love it. I remember reading these verses and miracles aloud in the waiting room before every appointment. And you know what? I wasn't scared. I had a confidence and a peace that only comes from the Lord. So, I will be taking my stack of papers with me on Tuesday. I'll be pouring over them during my four hour wait and I will be begging, pleading and crying out to the Lord for more. More love. More hope. More peace. More of Him. The Lord has shown Himself and His mighty presence in every moment of my son's life. From the moment of his birth, to the tiny moments forever embedded in my mind: first smiles, laughs, words and more. He's here. And He will meet me in that waiting room on Tuesday. And praise God that He's big enough to comfort me and guide and important surgery all at the same time. This isn't too big for Him, I just have to let go, step back and let Him work.

I'll leave you with some new, oh-so-adorable pictures of our miracle. Bring on the prayers, we're ready.

"He performs wonders that cannot be fathomed, miracles that cannot be counted." Job 5:9

"But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not grow faint." Isaiah 40:31
 "The Lord your God is with you, He is mighty to save. He will take Great Delight in you, He will quiet you with His love. He will rejoice over you with singing." Zephaniah 3:17

"As for God, His way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in Him." 2 Samuel 22:31

"For you created Owen in my inmost being: you knit Owen together in my womb. I praise you because Owen is fearfully and wonderfully made; Your works are wonderful, I know that full well. Owen's frame was not hidden from You wen he was made in the secret place. When Owen was woven together in the depths of the earth, Your eyes saw his unformed body. All the days ordained for him were written in your book before even one of them came to be." Psalm 139:13-16

Tuesday, November 15, 2011

A Visit Home, A Celebration and really, REALLY BIG News!

Yes, this post contains possibly the biggest news we've ever gotten...but you'll have to wait until the end! :)

We had a wonderful few days visiting family back in Owensboro. We were able to visit with lots of family and get in lots of squeezes and hugs! Since Owen is have surgery on December 6 we will miss Thanksgiving with our families. In an effort to keep him nice and healthy before surgery, we won't be going home. :(

Here are some pictures from our visit. Owen's personality is coming out so much and is loving visiting with friends and family!

                                                                     Visiting with Nanny. :)
                                                Tummy Time with his BFF (and cousin) Axell!
                                                    Playtime is the best with Uncle Will!
                                                       The boys dressed out for UK. :)

In honor of Owen's 1 year Anniversary of his homecoming we took Owen to see his favorite friend, ELMO!!

Owen has fallen head over heels for that silly, furry, monster. Before I had kids, I never wanted to be a part of the whole "licensed character" thing. I just wasn't a fan of the T-Shirts and paraphernalia. BUT Daddy blessed Owen with a Rock n Roll Elmo while he was in the hospital and it was love at first sight. There was no going back....Owen was smitten! Now Owen will reach, grab, and cry to hold anything with that red critters picture on it. We have Elmo books, stuffed animals and PJ's. All in the name of love, right? :)

Well, Owen LOVED Elmo Live! We had very close seats and his eyes were GLUED to the stage. The show was quite long and I was impressed at how well Owen made it through the show. He got a bit wiggly after intermission, but then the characters started coming into the audience...and Owen went crazy! He LOVED touching and hugging them. He wasn't scared one bit. :)

 So we had one minor major meltdown....the confetti canons were WAY too loud for sensitive Owen!

Celebrating the year anniversary of Owen's homecoming warms my heart like no other. When I think back to our 3 1/2 months in the NICU, for the most part I think of happy, joyous moments. EVERYTHING is a big deal in the NICU and we celebrated every tiny, little accomplishment Owen had. And when I say "we" it wasn't just Michael and myself. It was our wonderful doctors, nurses and nurse practitioners. All of which fell deeply in love with our sweet boy and still remain in contact to check on his progress.

We are ever so grateful for the care Owen received in the NICU. Those first months were hard, but we made it through, gliding on the prayers of so many and being "trained" to care for our boy by some of the best in the nation. Our house is filled with laughter and giggles from a sweet miracle who is changing so many lives. A lot has changed in one year, but one thing remains: I continue to daily be in awe of the greatness of our God and the miracle that he performed before my eyes. I fall in love all over again every time I look at those big blue eyes. :)

Leaving the Hospital. November 15, 2010

                                                         First time sleeping in his own bed!

                                                       One year later and such a HAM! :)

Okay, so you've been patient thus far, so I guess I can share our *little* bit of new with you....


The day we have been waiting for has arrived. Michael's sister, Carrie has been approved for kidney donation! Carrie matches as well as a parent (in theory) would match, 3 out of 6. She has been through the initial testing, CT scan and physical and she received that long awaited phone call last week. We are SO blessed to have such a loving family, with many who were willing to give Owen a new life.

Words cannot describe how grateful we are to Carrie and her willingness to make a sacrifice for Owen's life. Donation is harder on the "normal" life. She is giving him the gift of life that he would never know, had it not been for her decision to be tested. Our hearts are overflowing with joy for her decision and we are forever grateful to her.

Having Owen has truly showed me the love of Jesus. I can say in confidence that if it would save Owen, I would give my life for him. It breaks my heart that I am unable to donate my kidney to Owen, I would have done it yesterday if possible. But praise God for His mighty plan. That before even Carrie was created, he specifically created her with a kidney that would be perfect for Owen.

Please be in prayer for Carrie and Owen. That the Lord is preparing Carrie's body for donation and that she will remain healthy and steadfast in her decision to donate to Owen. Pray that the Lord is preparing Owen's body to receive her kidney and that our doctors and family we be able to schedule the surgery quickly and the healing and recovery time will go smoothly.

Thank you for your prayers. Continue to pray for wisdom for our doctors, in decision making and scheduling the transplant in making sure Owen's body is completely healed after his upcoming surgery. Continue to pray that Owen will remain healthy until surgery and will heal quickly and be on the fast track to transplant. :)

Wednesday, November 9, 2011

Owen's Story

I was asked by a fellow NICU Mom to participate in a wonderful idea she has created to serve mothers caring for their babies in the NICU. Her idea is to create a journal to give to new moms in the NICU. The journal will have pages to fill out information about their baby and of course, blank pages to record their thoughts during their stay. However, she has also asked those who have had babies in the NICU to tell their story on paper. To give hope to those who may feel lost and overwhelmed. The stories will be placed throughout the journal for moms to read as they write their own story. Having a baby in the NICU is beyond stressful. As a mother, you feel it is your job to protect your new baby from sickness and harm, and the feeling of helplessness can quickly over take you.

Please visit Mommy's Notes on facebook for more information!

I am honored to share Owen's story and it is my prayer that his story will tell of the grace and mercy poured over us during a time when it would have been so easy to completely fall apart.

Owen's Story:

My family’s journey through the NICU started long before my son was born. Our story is one that is laced with fear and anxiety, but overwhelmingly covered in grace and mercy from a Savior who not only chose to perform a miracle in our son’s life, but forever change the lives of those who know Owen and hear his story.
                At 20 weeks gestation complications in the development of my son’s kidneys were found on a routine ultrasound. It was later discovered that there was a blockage in my son’s bladder which did not allow him to empty his bladder. This caused his bladder to become completely full, backing up into his kidneys and causing irreversible damage. Not only were my son’s bladder and kidneys at stake, his lung function was the main concern of our group of high risk doctors. When babies are developing, the “urine” they empty is actually the amniotic fluid that is essential for lung development. Babies actually swallow the amniotic fluid, which is crucial in the proper development of lungs.
                At 21 weeks gestation my husband and I made the decision to undergo a fetal surgery in hopes to allow Owen’s bladder to drain. A shunt was placed into his bladder and left kidney to allow them to drain. At this time, doctor’s hopes for Owen’s survival were very minimal. They made it clear they were not performing the surgery to save his kidneys, the damage had been done. They were doing the surgery to give him hope to develop lungs to sustain life outside the womb. As time went on, Owen would need yet another surgery at 27 weeks, and then would spend the rest of the pregnancy without any measurable amniotic fluid.
                At 28 weeks I was admitted to the hospital (1.5 hours from our home) for the remainder of my pregnancy. Since I had no measurable fluid there was a danger that Owen could compress his umbilical cord, stopping blood flow and oxygen to his body. So we were monitored 3-4 times daily to check his heart rate and twice weekly ultrasounds were performed to check umbilical cord flow. I will tell you that this was the most precious time of my pregnancy. During this time I spent time with the Lord and felt His presence more than ever in my life. He was covering not only me and my husband, and relinquishing our fears of the future, but holding our unborn son tightly in the palm of His hand. My journaling during this time is filled with hope and scriptures telling the many miracles performed by a God who delights in blessing His children.
                During my time in the hospital our doctors made it very clear that there was not much hope for Owen’s survival upon birth, should his lungs not be well developed. In their eyes we would be “lucky” to be able to work with his low functioning kidneys, barring that he had the capability to breathe on his own. Having lung issues was far worse than kidney problems. Little did our doctors know that The Great Physician was carefully and precisely knitting each and every cell in Owen’s body and it would be used to bring glory to His name, both trudging through valleys and soaring on mountain tops. We met with many members of the NICU team and toured the NICU at the Children’s Hospital nearby, where our son would be transferred after birth, should he need surgery.
                I went into labor on Thursday, August 5, 2011. I was exactly 34 weeks pregnant. Our doctors were convinced that the longer Owen stayed inside me, the better. So, countless efforts were done to stop my labor. By Friday afternoon I was feeling pretty good and thought Owen had decided to wait a bit longer. Then Saturday rolled in. After heavy contractions on and off all day, I finally asked the doctors to check me around 11pm that night.  It was time. Within 30 minutes I was prepped and ready for my C-Section delivery. I had memorized several verses of Scripture to recite during my delivery. One of these verses was 1 Samuel 12:16 “Now then, stand still and see this great thing the Lord is about to do before your eyes!” I cannot tell you how power that verse was during that time, and continues to be as I raise my blessed son.
                As I waited to hear that anticipated first breath and cry from my son, all I heard was the deafening silence surrounding me. There was no breath. There was no cry. As my heart began to sink, the peace of the Lord covered me and lifted my weary soul from the pit I was quickly falling into. All of a sudden, I wasn’t scared. There was no need to fear. My son was created for a purpose. His kidneys are “broken” for a purpose. A purpose greater than I will ever know, but can bow in reverence to The King who carefully planned out Owen’s life and the legacy he continues to lead.
                Owen was placed on a ventilator to help him breathe immediately after birth. Doctors predicted Owen would be on the ventilator for about 3-4 days.  He was breathing completely on his own in about 12 hours. This was the first of many moments in which the hand of God was clearly revealed in Owen’s life. A perfect 5 lb. 14 oz. miracle was about to change our lives forever.
                In Owen’s first week of life here on earth he endured two major surgeries. One at 2 days old, the other at 5 days. Both surgeries were completed in efforts to help his body compensate for his failing kidneys. As time continued, Owen developed and thrived in the NICU. We were living in the Ronald McDonald House and my husband returned home periodically to pick up bills and check on the house.  Our lives were to some “turned upside down”. Our dogs were living with family, I had not returned to our house since June and there were no “close” plans to returning home. After 1 month of NICU life my husband had to return home, as he was finishing his 3rd year of medical school. This left me by myself caring for our son in the hospital. During this time I acquired a new family. Nurses that loved and cared for my son became like mothers or sisters to me. I leaned on them for support; I laughed with them and cried with them. It is my prayer that I exuded the light of Jesus in my suffering and in my hope during this time.
                Owen was in the NICU for exactly 100 days. I will never forget the day we were discharged. I can remember walking him around his bed to place him in his carseat and being so excited that I wasn’t tangled in cords. That I could walk wherever I pleased, while holding my son. My husband carefully packed our car and prepared to load his family whole in for the drive home. As I rode down the elevator with our beloved nurse tears streamed not only down my cheeks, but her’s as well. She was and remains my family. She loves my son and goes out of her way to visit him when we are at the hospital for checkups. It was a moment I will never forget and I am so blessed to have shared it with her. Her love for my son was clearly evident and I praise God for placing the knowledgeable, caring nurses in our lives.
                I can remember every minute of our first night at home- most likely because I didn’t sleep a wink. I was so in awe of the miracle sleeping before my eyes, in his own bed, in our house. Together, as a family, finally. Owen’s story isn’t over. Our road is still long, but we can praise God in knowing that He is paving the way before us. But we suffer and fear in the name of Jesus. We are brought to our knees in gratitude for a life that many doctors deemed impossible. Praise God for His plan and His sovereignty over Owen’s life.  My life has been forever changed by this gift of life. My time in the hospital preparing for Owen’s birth and the time spent caring for him in the NICU prepared me to be the mother Owen needs and deserves. NICU mothers are warriors. They have been through obstacles and endured more than many will endure in a lifetime. NICU mothers have strength to fight for the lives of their precious miracles and stand strong when their lives are raveling at the seams.
                I encourage you to use this journal. You may not see it now, but this time in your life is preparing you and molding you to be a stronger, more loving parent with a perspective on life that many do not have. Reading through my journals from our time in the hospital brings such encouragement to my life now. We have overcome what many thought would bring us down. Your baby needs you. Your baby needs to know you have hope. Your baby needs to feel your strength. Use this journal to pour your heart and soul into these blank pages. You have a new life in front of you. Essentially a “blank canvas”- how will you work on your masterpiece? You will get through this. And no matter what, it will be okay.
                It is my prayer that you seek the Lord and honor Him through this time. He will bless your suffering and bring you out of the pit. Your precious baby is safest in the arm of The One who carefully planned out the life before you. It is His plan that you take this journey. It is up to you to bring Him glory through your suffering.

“I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.”
-Psalm 139:14
For a peek into our life outside the NICU please visit knowinowen.blogspot.com and enjoy updates on our bubbly, babbling boy!

                                                    Just look how far this miracle has come!

Monday, October 31, 2011

Oh, that Growing Boy!

Well, our little man is now fully over our little battle with pneumonia. He is back and feeling better than ever!

Owen's personality is developing like crazy. He has become such a little man in what feels like overnight. Not only is he cracking up at Daddy's jokes, he's making lots and lots of new sounds! For whatever reason, the kidney disease Owen suffers from causes oral aversions. Which basically means Owen's mouth is "off limits"! He will put anything under the sun in his mouth. (Which, from talking with other kidney Mom's is quite impressive!) However...food is not generally included in Owen's repertoire of edible objects. So, Owen has been receiving Speech Therapy since we made it home from the hospital. Many think this is only for talking, which of course they do assist with, but also for helping Owen overcome his aversions to foods, new textures and smells. He loves, loves his water and will play in just about any food. He's coming a long great, and we have high hopes that with a new kidney, a new lease of enjoying foods will come as well! :)

Our house is now filled with lots of babbles, squeals and screams. And. I. Love. It. Hearing ga ga, ba ba, ma ma and da da. Is a milestone that many mothers simply cross off their list during the infancy babbling stage. Small milestones are difficult for Owen to reach and they are a big, big deal and heavily celebrated in our house! A friend of our family back home recently interviewed my family while writing an article about Owen in her journalism class. I was blessed while reading her article and reminded of just how amazing Owen's life really is. By doctors standards he shouldn't be here. He shouldn't be able to call my name and laugh hysterically when he sees his Daddy walk through the door every afternoon. Praise God that we know a different Physican, one that gives and takes away, but it our case gave not only life, but a new perspective of this journey here on Earth.

I pray that I don't get caught up in this life. Believe me, I can easily get so tangled up in the latest fashions (for Owen, of course) the newest toys and books and ways to help increase development. When in reality, I have a blessing who literally soaks up every single second he can with me. Not to brag, but this baby is pretty smitten with his Mama. :) Please pray that my heart will remain steadfast, chasing after the Lord as Michael and I work to raise Owen in a world that is saturated in sin. Pray that we will have wisdom in protecting him from sinning, and revealing the joy and infinite blessings of serving our Lord.

Owen has been celebrating Halloween....no tricks here....just treats! We went to a local bookstore this weekend for some spooky stories and a little trick or treating around the store. We won't be going through our neighborhood...it's a little chilly for a boy who catches colds a little too easily!

Super Baby and Daddy ready to go hear some Halloween tales!
                          Posing in front of the the fountain at Joseph Beth...the boy suddenly loves water!
                                                          Tasting one of his yummy treats!!
                           Mommy wanted to show off his curls, but he would rather wave "bye bye!"
                                                    Noodles and cheerios....what a dinner! :)
                                                       Just because my boys are too cute...
                                             I know....quite possibly the cutest boy on the planet!
Bath time is now a favorite activity in the Daugherty House. :)
                                                    Did I mention Owen loves water? :)

We have been working on sign language along with spoken words. This weekend Owen finally caught on to the sign for dog! Not surprising....Toby is his best friend. :)

Thanks again for keeping up with our little family and loving our miracle boy. We covet every prayer that is lifted for Owen. Please be in prayer for his doctors as they have scheduled his bladder surgery for December 6 and are meeting to discuss a date for his transplant. Be in prayer that Owen's body will heal quickly after this upcoming surgery and be ready for a new kidney. Also continue to be in prayer for our donor. That the Lord is anointing her body and preparing her kidney to fit perfectly into Owen's little body.

We look foward to sharing more updates on this little miracle how quickly he is growing and daily blessing our lives. :) I have a feeling that he will be on the move in a few months. He is loving his physical therapy and so desperatly wants to crawl!

Lamentations 3:55-57
"I called on your name, O LORD, from the depths of the pit; you heard my plea, 'Do not close
   your ear to my cry for help!' You came near when I called on you;  you said,'Do not fear!'

Sunday, October 16, 2011

The Longest Stay...

So we are coming off our longest besides living in the hospital for 100 days after birth hospital stay yet. Poor Owen was very, very sick. :(

It all started with on and off mild congestion for a week or so. Well, apparently it was all building up and settling in you guessed it, his lungs. :( We were admitted to UK on Saturday, October 1 for what we thought was another case of pneumonia. By that Wednesday Owen was not getting better, in fact we felt as if he was getting worse. He was on a good amount of oxygen, and was continuing to "desat" or drop his oxygen levels. Michael and I made the decision to transfer Owen to Cincinnati.

Trying to cheer up our sad boy with a new toy....yes, it was supposed to be for Christmas but who can say no to this baby?!?

I know, completely pitiful. :(
 Taking Owen to Cincy was a very good decision. Apparently, the pneumonia had caused Owen to retain quite a bit of fluid and dialysis was not "pulling it off" well on our home regimen. He was severely fluid overloaded and was getting 8 liters of high flow oxygen. Once they were able to "dry him out" he needed a blood transfusion and extra fluids to boost him back up. It was difficult to consent to the transfusion, as it can possibly desensitize him to a future transplant. However, his blood levels were dangerously low and his body really needed it. He will be taking immunosuppressants for about a month now to hopefully prevent any sensitization the transfusion could cause. Thankfully, Owen has only required two transfusions in his life, many of these "kidney kids" need more because of multiple surgeries and complications.

After his transfusion and the first full night of sleep in over a week, he finally started to perk up! Our hearts were rejoicing when we saw that sweet smile come back. I can say that we were completely surviving on the prayers of many friends and  family during this time. This was the worst we have ever seen Owen, and coming off a wonderful, healthy summer, this was a difficult week and a half!

Child Life came to each room to give out balloons. Owen loved his! :)
Mommy couldn't get enough snuggles from this boy!
YAY! I'm back home!!
We finally made it back home on Tuesday, October 11. Our time in the hospital was rough, and long. But once again puts everything into perspective for us. We are more than blessed to call this boy our son. It's a blessing to have him in our lives, filling our hearts with joy each day. There are times when I literally think I could bust with love for this angel. I am so, so proud of him and everything he has achieved. He has endured much more than you or I will likely see in this life and yet he greets each day with a smile as if he could conquer the world. :) And you know what? This baby is moving mountains. He represents the image of an unfailing, God who delights in blessing His children.

Because Owen has been so sick and is on immunosuppressants we mad the decision not to go to the Walk for Kids in Cincy on Saturday. Although we were so looking forward to showing off our miracle at the walk, the cooler temps kept us away. The new Team Owen shirts are ready, and once they make their way up to me from Owensboro I will send them out to those who ordered one! :)

We had a nice, relaxing weekend with a visit Marlee and Will. Owen loves visitors and was all smiles since he is feeling back to normal!

Thank you all for your prayers, especially over the past two weeks. Thank you for loving our family, and caring so deeply for our little Owen. We appreciate each and every prayer and encouraging words our family has been covered with. One day this little babbling boy will be able to thank you in person. :)

Owen's surgery for October 24 is being rescheduled. The doctors feel it is not wise to put him under anesthesia coming off such a harsh pneumonia. We aren't sure when it will be, but most likely in late November. This, unfortunately will push transplant back a bit. But we are working on getting our wonderful donor through the required appointments and once we are given the "okay" we can schedule a transplant date!! :)

I'll leave you with a few pictures of this happy, miracle boy!

Do not be afraid or discouraged, for the LORD will personally go ahead of you. He will be with you; he will neither fail you nor abandon you. -Deuteronomy 31:8

Tuesday, September 27, 2011

Last Chance!

Our fundraising walk for Cincinnati Children's is quickly approaching so we need to have all our T-Shirt orders in by tomorrow (Wednesday, Sept. 28). Shirts cost $10 this year. I think they are going to be pretty cute. :) And if you can't make it to the walk, you can support Owen and the hospital and wear yours anyway! We have sizes all the way down to onesies, and of course all adult sizes. :) (However, onesie and toddler size shirts will only say "Team Knowin Owen" they are too small to fit the entire screen on them.)

Speaking of the walk....join our team! :) The walk is Saturday, October 15 at 9am. If you can't make it to the walk but would like to donate to our team (all funds go to the hospital, not us) please click the link below. You can also join our team to walk with us by clicking the same link.

I realize I have not updated the blogging world in a while. Rest assured, we are still here! :) Owen is doing wonderful. He is growing and developing faster than ever before. Recently he has started babbling so our house is now full of ga-gas, mamas, dadas, and goo-goos. And I love it. His little voice just melts my heart! He began rolling (finally!) a few weeks ago. He can only roll from belly to back, but we are SO proud of him! He began his therapy at about 4 months old and this is a goal we have been working toward the entire time. When he learned to sit up it became even more difficult to squeeze in tummy time throughout the day. But he finally mustered up the muscles and strength to push over! Yay Owen!

Owen is a busy bee. Although he can't crawl yet (he is getting into the crawling position on his on now!) he plays, and plays and plays! He is so interested in his toys (and the TV) and plays his little heart out. In fact, as Daddy and I were doing some Christmas shopping last weekend Owen fell in love with a little dog that sings and dances. We (of course) bought if for him, intending for it to be a Christmas gift. Well......

Mommy and Daddy are total push overs and caved. :) Yes, Owen is incredibly spoiled, but hey- why not? He is a miracle after all. :)
I'll leave you with a few new pictures of our growing boy. Be sure to take a look at his growing hair! It's definitely taken off and I have a feeling it's going to have some of Mommy's waves and curls!

Learning to clap. Of course it's for the pretty lady singing on TV....never when Mommy requests!

Daddy was finally able to find some free time and put Owen's new truck together. He was one cool dude. :)

We visited an orchard and Owen got his first experience with pumpkins.

He as a sleepy boy by the end of our day at Boyd Orchard!

Trying to escape and show off how well he is doing in PT. :)

Just another day playing with Mommy. :)

Mommy's heart is breaking as the "baby look" fades into a handsome "big boy" look!

I should mention that Owen's surgery is still scheduled for Monday, October 24. He will be having the bladder surgery, as well and a g-tube placement for feeding, rather than using the one in his nose. We have had many doctors appointments and consultations and all are excited about how big and strong Owen is and we are confident he will do well and hopefully recover quickly. The last surgery Owen had was on his 2 month birthday so we are a bit removed from all the hospitals/surgery and recovery. It's not an easy pill to swallow....sending you baby back to surgery. But we remain confident that the Lord is holding Owen by his right hand. This surgery is a step toward transplant....which I will hopefully have lots of exciting news to share about in my next post! You should know that right now we having an amazing donor and further testing for transplant will be taking place on September 30 and October 11. Please be in prayer that should this be the kidney to Lord has chosen for Owen that it will be clearly revealed to our doctors.

There are many blessings we will never receive until we are ready to pay the price of pain, for the path of suffering is the only way to reach them.
-J.R. Miller