Saturday, April 28, 2012

That Day

Today is That Day.

That Day, exactly two years ago when my world was rocked to it's core. That Day, when the joy of being an expecting first time Mommy was shattered. That Day, when my faith was challenged as never before.

That Day, when the biggest miracle I would ever witness began.

While April 28 will forever remain etched in my memory as the day Michael and I were delivered the news that our precious, unborn son was faced with a very grim prognosis of surviving life here on Earth. Yes, it's a day that brings tears to my eyes when I remember the pain that immediately struck my heart upon hearing the doctor's unwanted news. However, through my fears and worry, I could not see the good the Lord had planned through this sorrow. I could not see how our lives would be blessed beyond my greatest thoughts and desires. I couldn't see it then, but I see it now.

I see it in the face of an angel who greets each day with the biggest smile. I see it in the eyes of a boy determined to move and reach milestones at an amazing pace. I see it in the faces of doctors who (one) admittedly stated that it was through our faith our son was saved. I hear it in the messages we receive from others who have been touched and moved to seek the Lord upon hearing Owen's story.

Today, two years later I'm not mourning the life that could have been. I'm rejoicing for the trials we've overcome. I'm prepared for the long journey ahead. I'm grateful for the smallest things in life. And I'm busy, chasing a healthy boy who is growing and developing by leaps and bounds!

"The strength of our faith is in direct proportion to our level of belief that God will do exactly what He has promised....Faith rests on the pure Word of God alone. And when we take Him at His Word, our hearts are at peace. God delights in causing us to exercise our faith. He does so to bless us individually, to bless the church at large, and as a witness to unbelievers"

No, God didn't promise me Owen would live. He didn't promise me He would miraculously heal him. What He did promise, is that He takes great delight in blessing His children. His promise shows me that His plan, while challenging, is carefully created to bring glory to Him, but holds abundant blessings that I could never begin to ask for. He promises me that though I will weep, though I will experience sorrow, that joy comes in the morning. He has promised me that through unrelenting faith and trust in Him, it will be okay.

If only I had understood this two years ago. If only I knew that this was for my good. That I would be blessed from this, I could have praised Him more. I could have trusted Him more fully. I'm still growing. He's not finished working in me.

Two years have passed, and I can finally say Thank You. Thank you for this valley of suffering. Thank you for giving me this cup to hold, this cross to bear. Thank you, for choosing to exercise my faith in a tough way, to show me just how mighty You are.

Thank you, for this blessing that lived. This blessing that's proving that nothing is impossible for You. This blessing that is showing the world, Our God Reigns!

Stand firm and you will see the deliverance the Lord will bring you today. Exodus 14:13

Saturday, April 21, 2012

Home Again, Home Again!

Owen made it home on Friday, April 13. (Whoever said that was an unlucky day, anyway?!) His time in the hospital was under two weeks, and doctors were actually ready to release us 1 week post transplant, but we needed to get a better handle on his bladder and urine output before we made our trek back home. Needless to say, this boy is a trooper. He was on pain meds as needed when we were released and two days after coming home he didn't need them at all. :)

Ready to go home! His shirt says "I Contain Recycled Parts" :)

I am amazed at how fast his recovery has been! Once we made it through the first couple of days and were able to find the best "recipe" for pain meds, he was a happy camper, and ready to get out of that hospital crib! We had PT, OT and speech come by to fill our days with playtime and strengthening. Although, Owen seemed to have picked up right where he left off and his first day playing on the mat he was already pulling up to his knees and getting into the crawling position on his own!

Playing bubbles on the mat with Daddy. :)
Owen's recovery from a nephrology (kidney doctors) standpoint has been amazing. His labs are just beautiful. The first set of labs that were taken about 1 hour after transplant already showed normal levels. I was amazed! I had no idea that the kidney would kick in so quickly! His labs have remained great and we are just working out the appropriate "maintenance doses" for his rejection medications. Our first week home we got labs three times and went to clinic twice. We will be on a twice weekly schedule for a while and slowing wean down.

Aunt Carrie is doing wonderful as well. We were able to meet up at our appointment in Cincy on Friday, as she was there as well. Everything looked great for her, and they are working on weaning her pain meds, but still adequately managing pain! This is the part where you hear about the recipient healing faster than the donor...but Aunt Carrie sure looks great to me!

Aunt Carrie was discharged on Friday, just 3 days after surgery!
Speaking of our appointment on Friday...it was nothing short of wonderful! We met with nephrology and urology (bladder doctor). For those that have followed Owen's story you know that his bladder as caused a world of turmoil in his precious body, it being the reason for his kidney failure. So, meeting with urology is generally not our favorite, as we are constantly reminded of just how badly damaged Owen's bladder is and how it will likely require future surgeries.

During transplant, our urologist found that not only is Owen's bladder very tiny, but it is also very, very thin. This made connecting the new kidney to his bladder quite difficult. Our urologist told Owen he " knocked off a few years of his life" during transplant. haha! He was not expecting his bladder to be like this. In most cases, babies like Owen have very thick bladders, which also makes transplant difficult. But our urologist clearly said this was one of the most difficult bladders he has ever worked with during transplant. Well, that being said, we found out on Friday that Owen's bladder has thickened! Just since transplant the doctor was able to see thickening from the ultrasound on Friday. I should tell you that our doctor is all business, and very serious. However, he had a big smile on his face when delivering this news! Every night as I pray over Owen I ask that the Lord will choose to strengthen and stretch Owen's bladder. I invite you to do the same, as we are already seeing the beautiful results of God's hands working in Owen's body! To add to that wonderful news, our doctor admitted he was quite surprised at how well his kidney is adjusting to Owen's being in Owen's body. I don't understand all the "lingo" used during the ultrasound, but he said that at this time he generally does not see such perfect perfusion and wavelength activity. He said that our donor must be "very healthy, with a great resting blood pressure." He said that one of the more difficult tasks of managing an adult kidney in a baby is the blood pressure The adult kidney is used to a higher blood pressure than what a baby's would normally run. So, the fact that Carrie is indeed healthy with good blood pressure has been such a blessing. :)

We came home to a new schedule of medications (with very strict times and guidelines) and a new, rigorous cathing schedule. While we were quite overwhelmed in the hospital, it's totally doable. :) We started out cathing Owen every 2 hours and placing a foley catheter in overnight. The kid is making urine like you wouldn't believe! He started out making 3-4 liters of urine daily! It's slowed down to about 1 liter a day, with lots of wet diapers! This is so new for us. Owen made very little urine before transplant and we are now changing lots and lots of diapers and loving it! After our rock star appointment on Friday we were able to reducing cathing to every 3 hours, and also instructed to leave the foley in for only 8 hours per night. Since we are on "lock down" and not going anywhere, except the hospital it really hasn't been too stressful. How could it be? We are watching a miracle grow before our eyes!

Munching on a couple of cookies. Owen isn't too interested in eating just yet, we have to get on a more manageable feeding schedule to allow for more hunger during the day.

We immediately went for a walk when we made it home. Sweet Owen saw his car in the garage and immediately begin saying "brrrmm brrrmmm" He was ready to go!

Many have inquired about the changes we have seen in Owen since transplant. The most noticeable change is his amazing energy level and drive to MOVE! The boy is crazy! He is crawling all over the place and literally picked it up in about two days. He is so much stronger and has energy to spare for days. In fact, he went SIX days straight in the hospital with no nap. He played and played until about 10pm each night and would finally pass out. If you know my Owen, you know the boy loves his afternoon nap (as does his Mommy!), but there was just no stopping him! It's been touch and go with napping since we've returned home. We attempt to have an hour of quiet time each afternoon, at least for Mommy's sake. :) We've also noticed lots more babbling, singing and talking! He is just so happy all the time and loves to sing and make noises. :) He has his own, special sign for "please". We worked very hard one night trying to teach him to sign please, rather than grunt or whine for something he wants. Instead of patting his chest, like we were instructing him, he just brings he sweet hands together in front. Not a clap, but similar. However, he caught on pretty fast and he is signing please for everything now! :)

Thank you, thank you for your prayers covering Owen and our family. We have been blessed beyond measure and everyday is such an adventure! I love to sit back in complete awe of what God is doing while I watch Owen crawl, explore and move all over our floor. Something we most definitely were not promised to enjoy. While our days are super, super busy and this pregnant Mama and ever expanding belly struggle to keep up, I just wouldn't have it any other way!

2 Timothy 4:17
"But the Lord stood at my side and gave me strength, so that through me the message might be fully proclaimed..."

Thursday, April 5, 2012

It's NEW Life!

As I sit here typing, my beautiful boy is resting peacefully with a brand new (gently used) kidney! I'm not sure that I've totally come to grips with the fact that my son is a transplant recipient. We've waited for this day for what seems like an eternity, and now it's over, and Owen has beautiful, perfect labs to show for it!

For our kidney friends: Creatinine: .14  BUN: 1 (They've warned us they won't stay this low, but have said he's got a GREAT kidney!)

Last time for dialysis at home!

Getting ready to leave for the hospital.

Transplant day has come and gone, but will likely remain fresh in my memory forever. We had a wonderful group of family and friends who came up to support our family during this time. Not to mention, the hundreds of emails, posts, messages and texts we received from those who were loving on us from home!

I wasn't able to get a picture a picture of all our visitors. Sweet Owen had about 20 people cheering him on in the waiting room! We are so, so thankful to those who took the time to drive up and spend the day with us. You made our day so much easier and we are so thankful for your kind hearts!

We are completely blown away by the number of people who know and love Owen, and are consistently praying for him. We thank you, from the bottom of our hearts for your dedication to going to The Father on behalf of our son!

The actual transplant was a bit delayed in getting started, due to a transplant that occurred through the night. Carrie was taken back around 10am and Owen followed around 11am.

The surgery went very well, but Owen made things very challenging. (Surely the doctors weren't surprised....he's yet to "follow the books!")

Resting after coming out of surgery.

Carrie's surgery went very smoothly and she was out in recovery within about 4 hours. Owen's surgery began by removing his right kidney and ureter, as they are a risk for infection due to the reflux. This proved somewhat difficult as his ureter was "glued" in very tightly!

The doctors came out or called our room periodically so we had some idea as to what was going on during the surgery. There was a small "snafoo" when attaching the arteries of Owen's new kidney, but from what we hear it only lasted about 10minutes and his kidney is working perfectly. Literally. They said it was perfect.

The Lord has completely orchestrated and blessed every minute of this experience and His presence was so thickly felt during the longest day of our lives. Owen's doctor even said he was so pleased that he had a female donor rather than a male. So although our hearts were saddened when Michael was ruled out to donate, clearly there was a reason! Carrie's kidney was "quite large" and he didn't think there would have been enough room had we used a bigger, male kidney! Clearly, The Lord knew what He was doing! :)

Post Op Day 1
The urologist was quite surprised as to how Owen's bladder looked. From birth, we have been told that Owen has a tiny, very thick walled bladder. Well, when the surgeon went to attach the new ureter to his bladder, he found a somewhat small bladder, but the wall is very, very thin. Like paper thin. Why? No one has a clue! Owen did, however win the award for "Most difficult bladder to work with" according to our surgeon! All that, though and everything was attached perfectly and safely! The urologist made no changes to his bladder. He doesn't feel a vesicostomy or ureterostomy are necessary. We will increase our cathing regimen to every 2 hours for now, and leave one in over night. (Although right now he has in a Foley catheter and will continue for a few more days.) Our doctor has made it clear that Owen will have future surgeries, but, we are off to a terrific start! We are praising God that no other interventions were needed to his bladder and that it is strong enough to support his new, amazing kidney! :)

Aunt Carrie is doing wonderful, she is so tough! Words will never be able to describe our gratitude for her. She and Owen are connected for life!

Two very special people! (Post Op Day 2)
Owen is still in the PICU now, but will hopefully be moved to the regular floor tomorrow. His pain management is going much better than yesterday, but he's still a bit of a grump when awake. (Do you really blame him?!) As far as we know, Aunt Carrie should be discharged tomorrow. She's been up and walking today and is healing well!

Thank you, thank you for following our story and praising God for this miracle (x2)!! We love you all and are so blessed to be surrounded by your love and prayers!