Monday, August 29, 2011

Rallying the Troops!

It's time to get your walk on in support of Cincinnati Children's! We are "rallying the troops" for Team Knowin Owen in this year's CCHMC Walks for Kids.

We has many supporters and walkers during last year's walk, BUT this year our guest of honor will be joining us! Owen was still in the hospital during the walk last year, but he is ready to walk stroll his little heart out with the team this year!

We will be creating a team (Team Knowin Owen) and linking it to the blog and facebook soon. You can click on the link and join our team, and of course donate any amount of money you feel led to give. Walkers are encouraged to raise at least $25 (you get a free t-shirt if you do!). It does not cost anything to join the walk, but as I said, you are encouraged to get at least $25.  The walk has two courses: a 1 mile track and a 3 mile track. We will have to gauge Owen's mood as to which trial he chooses. :)

The walk begins at 10am on October 15 at Coney Island in Cincinnati. There is carnival for kids that opens at 8am, as well at check in beginning then too. They will have goody bags for kids, face painting, rides, and pumpkin decorating. There is a complimentary lunch provided for all registered walkers and it's over by 1pm!

We are planning to have new Team Owen shirts this year and will soon be taking orders. We are going to try and find a more organized way for taking orders and making sure you get them, as we still have several shirts left over from last year! Our t-shirt orders will need to be completed by the 3rd week of September to ensure they will be ready for the walk!

We hope you will consider joining us, or donating to our team. We cannot tell you how wonderful CCHMC has been not only in Owen's care, but in the comfort they have provided our family during his 100 day stay and the love we feel at each and every visit! Please consider donating to this wonderful hospital.  Visit


 to donate or join our team. If you live in Owensboro, we will be visiting home soon and I can get it from you there, or just give it to someone in our family and they will make sure we get it!

We hope you will be able to join us on this special day! Mark your calendars now....Owen wants to have the biggest team at the walk!

**Upcoming Surgery Note**
Owen's bladder surgery has now been scheduled for Monday, October 24. Please keep him in your prayers and begin praying now for his surgeons. Pray that the Lord will guide their hands and infuse them with wisdom. Pray that Owen's body is preparing itself for surgery and he will be strong and have a quick recovery!

Tuesday, August 16, 2011

A Year in Pictures

I've taken monthly pictures of Owen since he was born. I made an adorable banner for his birthday to show just how much he's grown and changed since birth. But I thought I'd share them on here...he's got lots of fans that like to check up on him! :)

Just a few minutes old...he tried to take such a big breath that he developed a hole in his lung and needed to be put on the ventilator. But this strong boy was breathing on his own in about 12 hours. :)
5 lbs 14 oz  17.5in

One month old and sleeping alot! Being 6 weeks early, Owen really worked on catching up on some sleep.
7lbs 19in

                                      What a growth spurt! Looking nice and chunky at 2 months. :)
                                                                             10lbs 21in

He was so precious for this photo shoot...close to smiling. We just had to "wake up" those smile muscles! This was our last monthly picture taken at the hospital.
12 lbs 22in

Our first monthly picture taken at home! Can you tell he was happy?! :)
14lbs 23in

Lookin like a very big boy at 5 months! He was changing into such a little man. :)
15 lbs 23.5 in

We tried to squeeze into Daddy's baby outfit for our 6 month picture. It didn't quite button, but still looked cute!
17lbs 24 in

All smiles for 7 months! Mommy tried this photo shoot alone, but we had to wait for Daddy to get some big laughs. :)
18lbs 24.5in

Enjoying the nice weather outside for an 8 month shot. :)
19lbs 25in

A nine month shoot on Owen's first trip home to Owensboro! He was so excited to finally meet all his family!
20.8 lbs 27in

What an angel. I just fall in love with him over and over again!
21.6 lbs 28in

This was an "active" photo shoot, as my little friend is wanting to explore the world around him!
22 lbs 28.5 in

A year old. We made it, baby. You're cuter than ever, more precious by the day and a blessing to all who know you!
22.4 lbs 29in

It's been a whirlwind of a year, but I just wouldn't trade it for anything. Thanks for praying for this sweet, little miracle. God is doing great things in his life and we praise Him for His love and faithfulness to Owen.

Friday, August 12, 2011

Update with Transplant in the Future

Our family made the trek up to Cincinnati last Friday for another "marathon day" of back to back appointments. We were doing repeat bladder testing as well as meeting with Owen's nephrologist and urologist to get an idea of what to expect in the next year or so. The last time we had met with urology we left very discouraged and in the dark about what was to come in Owen's care.

Yesterday's appointments went much more smoothly and we left feeling confident in the physicians making decisions for Owen.

The bladder testing that was done for Owen showed us some answered prayers. Upon our last visit we found out that because of the extensive damage to Owen's bladder in utero, it could only hold about 30ml, or the amount of a newborn. Owen's bladder medication was increased in hope to allow it to stretch and grow. Well, this time his bladder held about 2X more than 4 months ago! Yay! This was wonderful news, however his bladder and ureters (tubes that connect the bladder to the kidneys) are still severely damaged and reflux back up to his kidneys. His ureters are extremely stretched out and floppy. They cannot "shrink" or go back to normal size, so the reflux is likely to always be a problem. The reason this is a problem is because after transplant, these damaged ureters can lead to infection in the new kidney.

In order to create a "safe environment" for transplant Owen is going to need surgery in the next month or two. This is not exactly what we wanted to hear. However, Owen's new doctor assured us that this is a necessary step toward transplant. We have been blessed with a urologist who is very confident in his decision, and has poured over Owen's charts and records, assuring us this is the best decision for him now.

The surgery Owen will be having is called a vesicostomy. This surgery requires the surgeons to bring part of Owen's bladder wall to the surface of his skin, to allow it to flow freely and no longer be under high pressures, causing reflux to his kidneys. The vesicostomy will be low enough that his diaper will cover the opening, but we will be seeking out help from other parents as far as the best techniques go in keeping him dry, as it is at the top of the diaper and not in the absorbent part.

During this surgery Owen will also be receiving a g-tube placement. This will be a tube placed directly into his stomach from his abdomen. This will allow us to get ride of that pesky NG tube in his nose! Owen's doctor had hoped he could get by without needing a g-tube as he does better "mouth wise" than many other kidney babies, but relying on him to take the ample amounts of fluids and meds after transplant will be asking a lot from a babe who doesn't eat by mouth!

We are thinking the recovery time will be about a week or so in the hospital. Because of the g-tube placement in the abdomen, we cannot do dialysis for a couple of nights. This means Owen's feeds and fluids will be highly restricted and labs will be closely watched. Once we resume dialysis and feeds, it's a very slow process to allow for adequate healing.

Owen's urologist would like to allow 8-12 weeks of total healing time before transplant takes place. So we are hopefully looking at January or February as our big month! Before that, we have to find a donor though. We are in the works of testing 3 people right now. So far we've gotten great news on our dear friend from church and Michael's sisters will be getting their blood work done in a couple of weeks. Please continue to pray that the Lord will reveal the perfect kidney to us. That we will have complete peace in knowing that our doctors are making wise decisions for Owen and preparing his body for a new kidney.

Owen's nephrology  visit went exceptionally well. :) We are so thankful that he is doing so well on dialysis and his body is responding to the treatment. His labs looked so good that we were able to decrease his therapy time to 11 hours! yay!

Our appointment was 2 days before Owen's birthday. He is so loved by his nurses and doctors at CCHMC that they presented him with a balloon, cake, and present!

We so appreciate the amazing care Owen receives at CCHMC. We know that he is in good hands, and he is loved and cherished by his caregivers! Please continue to be in prayer for Owen, as well as our doctors. That the Lord will bless the hands of the surgeons and work through them during Owen's surgery. The surgery will be scheduled for late September/ early October.

Owen's actual birthday was this past Sunday. We had a wonderful family day together. Mommy and Daddy let Owen open presents and enjoy his cake that he didn't finish on Friday! He had SO much fun and was a complete mess!

We are so blessed to have Owen in our lives. He truly makes life fun! Thank you for your prayers for Owen. We know that he is on the minds and hearts of many, and we could never express our gratitude for all those storming the gates of Heaven in Owen's name. We are claiming this victory of healing, now. We know the Lord is holding Owen in the palm of His hand and He takes great delight in blessing His children.

Sunday, August 7, 2011

Standing Still

There are few moments in one's life when time stands absolutely still. Specific details are clearly and forever embedded into your mind. The clothes you had on, the smell of the air, emotions, reactions. In the past year and a half or so I have experienced quite a few of these moments. Some moments devastating, some joyful. All life changing.

1. Pregnant?
The day I found out I was pregnant was a day I will never forget, and pray that I can always go back to the joyous moment my husband and I shared together. Michael and I were very blessed to conceive within a month of our decision to being trying for a baby. However, I am one of the "one in four women misread their pregnancy test." Yes, you read that right...I misread my positive test. We found out we were expecting after being home for Christmas vacation in 2010. I took a test while we were unpacking out suit cases and when I did not see a bold, second pink line I tossed it aside and told Michael it was a no. Well, praise God he double checked because there was definitely a tiny, light second line. We celebrated momentarily, but then Michael quickly ran to the store to buy some more tests for this skeptical Mommy. :) I can remember falling to my knees after he left and just praising God for answering our prayers. I have longed to be a Mom since a young age. In fact, I began praying the Lord would bless and prepare my womb for children long before I was married.

I prayed for this child, and the LORD has granted me what I asked of him.
1 Samuel 1:27
2. It's a BOY!
Michael and I were so excited to find out what our sweet baby was that we scheduled an appointment at a local baby spa instead of waiting until our 20 week appointment with my OB. Michael was convinced it was a girl. I had believed from the beginning it was a boy (pregnancy dreams are very vivid!). We were watching the ultrasound probe go around (on a 50in TV) as the tech did the common measurements before revealing the big news. I thought I may have seen a little appendage between those little legs, but I wasn't so sure. Then, she slowed down....there was no mistaking it! I wish I could have taped Michael's reaction. I mean what Dad doesn't really, really want a boy to pass down the family name? He was on cloud nine. It was finally real and we could picture holding our little Owen. :)

Make no mistake.....it's an OWEN!

3. There's a Problem
By far the most devastating moment of my life was the ultrasound appointment in which we found out about Owen's condition. Unfortunately I remember the most about this moment and an forced to relive it through terrible dreams. Recalling this moment sends a flood of emotions through my body. I remember what I was wearing. I remember the silence in the room. I remember waiting for the technician to say something positive....instead I heard "I'm going to have to go get the doctor." This moment still makes me get a lump in my throat.I remember my body aching on the ride home. I remember sobbing for hours until I fell asleep only to wake up to the worst headache I've ever hard.I was drained. Devastated. So upset it made me feel sick. But little did I know that this moment would begin a change in my life so dramatic and moving that without it, my faith and strength would not be as strong as it is today.

Not an actual picture from that appointment (we don't have any from that day) but this in  this picture you can see his enlarged bladder.

4. Low Average!
We had another very defining moment in our pregnancy when we had an MRI at 33 weeks to check Owen's lung volume. It was questionable that due to my low amniotic fluid that Owen's lungs would not develop properly and he would not survive birth. The day of our MRI was my first time to leave the hospital in about 7 weeks. So I can remember alot of what went on, being such a change in my daily routine. :) One change being that I didn't have on sweatpants all day. :) The MRI went very smoothly and we were in and out in about an hour or so. Then we had to wait. A long, looooong time. So, as any pregnant lady would do, we went to Cheesecake Factory. :) After my ridiculously highly caloric meal. (VERY delicious though!) We headed back to receive our results. The doctors were running way behind that day and we had to wait over an hour to share the results with us. Once we were finally called into the extremely intimidating conference room full of very intelligent people. We sat nervously as the doctor began to explain the results. He began by showing us the slides and cross sections of Owen's lungs. Then he finally said it....his lung volume measure in the "low average range for 35 weeks." Well, that's all I needed to hear! Praise God! However, then I realized he said 35 weeks. I was only 33....this of course, made our odds even better! He predicted Owen would need some help breathing at birth, but would then be fine. He was exactly right. Owen was intubated within minutes of being born, but was breathing fine on his own less than 12 hours later!

One of his first pictures, breathing tube and all. His poor little face was smashed from being all squished with not fluid!

5. The Birth Day
Oh the day. The day that this miracle entered the world, on his own terms....of course not on his scheduled day. :) Owen has yet to go "by the books" for anything! My labor began on Thursday, August 5. Since I was only 34 weeks, the doctors tried quickly to stop the labor, giving me shots of medicine that made me batty. Literally. I was crazy. But, it worked....for a while. :) Once the shots kicked in I then had to take a pill every 2 hours or so as long as my heart rate was below 120 (side effect of the med was increased heart rate). Everything was great until Saturday. Michael got a call from his Mom that our little mischievous dog, Toby had escaped. Well....start the contractions again! For the record, they found him about 20 mins later but that didn't stop my contractions. We started another round of shots that afternoon and the contractions were finally under control. I remember family and friends asking if they should head to Cincy, thinking he was coming. I assured them it was all fine and Owen was staying put. HA HA. About 10:30 that night as I was getting ready for bed I thought I could feel Owen trying to come out. I know, it's weird and I can't explain it, but he was coming and I knew it. I started having very strong contractions so Michael decided to call the doctor in. Well, it was real alright! When she checked my cervix she commented that she could "feel his feet" (the little stinker was breech). Michael asked if he should call our family and she responded with "they're not going to make it". Apparently I had dilated to about 8-9 centimeters and it was time to go! Within about 30 minutes or so Owen was out! I actually don't remember much about the delivery. However, I can remember watching Michael's face for clues as to what was going on. I had memorized several verses that I had planned to recite during our delivery. Well, when the time came I could only remember a few. One of those being the verse we have chosen to continually pray over Owen: "Now then, stand still and see this great thing that the Lord is about to do!" 1 Samuel 12:16

6. O.N.E
It's here. His first birthday. I can't believe and I almost want to deny that my precious, tiny baby is a one-year-old. But for as many tears I will shed of sadness that he is growing up so fast. Many more will fall in praise to a King who saved this baby from death. A King who intentionally and delicately knitted his beautiful, perfect body together. So I will savor every moment of this day, and days to come. I am in awe of the many things Owen is doing. He continues to excel in all his therapies and we are reminded weekly by them just how smart he is. :) My favorite new "trick" is reaching to be held. I love it that he longs for me to snuggle him almost as much I want to snuggle him. I, of course could snuggle him all day, but he needs breaks to play and watch TV!:)

Since the day of Owen's birth I've had many days in which I ache for time to just stand still. There are many nights when I long to wake him so I can hear his sweet "Mammaa" babble just one more time before I sleep. Sometimes I stand beside his bed, watching him in peaceful slumber. Completely amazed at this life before my eyes. A life that many questioned would ever exist. A life, that is changing the world.

Well, as of today it happened. My baby is 1. My baby. I don't know where the time has gone, and why it just wont stand still so I can soak up every minute of this wonderful gift. But I know that every day is filled with more love, more laughter and more reverence and awe of a God who saves.

We had a wonderful birthday party for Owen last weekend, in Owensboro. He did much better than we had anticipated. The extreme heat coupled with a large crowd isn't Owen's idea of fun. We so appreciate all the made it out to the party and those that send their best wishes and love. We asked for party guests to bring a new toy to donate to Child Life Services at CCHMC. (Let's face it, Owen could open a store with the amount of toys he already has!) We were blessed during our time in the hospital by Child Life, and thought this would be a wonderful opportunity to bless other children in the hospital. We received so many toys we couldn't bring them all home in our car! We took about half the toys up on our last appointment and they were so very thankful. :)

Here are some pictures from the big party:

I'll leave with with a sweet video of Owen's first year. A couple sweet friends from church complied the video for us with pictures and verses we had selected. I can guarantee you smile, maybe laugh, and it's likely you'll shed a tear or too. But I know it will leave you in awe of the awesomeness of our amazing Savior.

The video is in two parts, and unfortunately I couldn't get it to embed on the page, so you'll have to click the links to watch!

Part 1:

Part 2:
Thank you all for sharing in Owen's first year. We thank you deeply for your constant prayers and concerns for our sweet boy. He is loved and cherished by many! We will continue to keep you updated on his progress, as we had a big appointment this week and have lots of news to share, so stay tuned!