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!'

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

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.
http://giving.cincinnatichildrens.org/netcommunity/knowinowen1

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

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

http://giving.cincinnatichildrens.org/netcommunity/knowinowen1

 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!

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.

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.