Thursday, November 25, 2010

Happy Thanksgiving!

Hello everyone!

Well we have a lot to share, but the most important thing is that Owen was discharged on 11/15 and we celebrated our first holiday at home as a family! 

We are still busy learning the in's and out's of Owen's care being at home, so we will give an update soon when things calm down.

Until then, now that Owen is doing great and we are more than thankful to be celebrating such a special day with our special boy!

"Doesn't matter where I am, I still hate baths!"

Sunday, October 31, 2010

Happy Halloween!

Owen has had a wonderful Halloween. Since Mommy and Daddy have been Ketchup and Mustard for a long time, they decided to finally complete the meal with a yummy, little Hot dog!

He is by far the cutest hot dog around!

His chubby cheeks were just perfect for his costume!

Couldn't you just eat him up?!
After about 10mins of pictures, Owen was finished!

Best Halloween yet!

Owen is doing great. We have finally transitioned to the cycler and are one step closer to coming home! We've only been on the cycler for a few days so they are trying to work out the kinks as far as how much fluid Owen needs to remove through dialysis per cycling period. We started off with not enough, now a little too much. So hopefully soon we will be just perfect! The doctors are hoping to send us home in a couple of weeks with an 8 hour break per day from dialysis.

We are just so blessed by our sweet boy. Nothing can bring tears to your eyes faster than hearing his sweet voice and watching him smile. He is nothing short of a miracle and we are daily praising God for this gift. We pray that those who know Owen's story will continue to see the Glory of God through his progression. God has been so good to us and Owen is a testament to His great love. Thank you all for your prayers and continued support. We are so grateful for all the encouraging words and know that our time of suffering will be rewarded and we will see the goodness of The Lord in the land of the living!

Sunday, October 17, 2010

A Great Weekend!

We had a great weekend up here in Cincy, with Cincinnati Walks for Kids and some very special visitors!

Thanks to all who walked and/or contributed to our walk. It was a great success and we can't wait to take our little man next year!

Team Owen ready to walk!
Our shirts were a big hit!
Owen also had some very special visitors this weekend. Uncle Will finally got to hold our little guy! Will met Owen the day he was born, but has not been able to see him since then.

Owen loved being held by Uncle Will...so much he was snoring!
Owen is doing great with dialysis and has recovered remarkably well from surgery. He is eating well and taking at least half of his feeds by bottle. He is currently up to 110ml on dialysis. Doctors are hoping to get up to 160-180ml before we can go home. At that time he should be on a 12 hour schedule. So when we go home he will only need dialysis at night and we can unhook him during the day! I can't wait to be able to hold Owen and actually walk around with no tubes hanging around!

Continue to pray for Owen's progress. Thank you all so much for your encouragement and support. We still have a long road ahead of us, but The Lord is faithful and we see His blessings each day in the eyes of our sweet boy!

Wednesday, October 13, 2010

Cincy Walks For Kids!

Hello Team Owen!

If you are planning on walking, the event will be held this Saturday, Oct 16. 

Registration is from 8:30-10 AM, and there is an area specially made for teams to meet up. 

For directions, FAQs, and other stuff, visit: http://giving.cincinnatichildrens.org/NetCommunity/Page.aspx?pid=973

I do know that every child and infant must also be registered (for free), and that can be done on Saturday as well.

Please e-mail me at Michael.daugherty@uky.edu if you plan on coming so we can have a proper head count.  And you can also call 270-314-5927 (tyler's number) on Saturday if its hard to find us.

Team Owen shirts will be there too if you ordered one!  Hope to see everyone there!

Saturday, October 9, 2010

Post-OP update

Resting back in the RCNIC after surgery

Owen did great from his operation, although it was quite a long surgery.   They didn't take him back to the OR until about 5:00 PM ET, and I believe it was after 8:00 before they were finished.   The urologist had good things to say about his surgery, but he did voice concern about an additional valve constriction more distal in the urethra (closer to the opening of the penis.) While this isn't too concerning right now, it may have ramifications to how well Owen can urinate without the aid of a catheter in the future.   He came back to us on the ventilator, which wasn't an easy sight to see.  We had gone 6 weeks since the last surgery, so it had been awhile since Owen had to be put under general anesthesia.   He was ultimately left on the ventilator to help sleep through the initial shock of post-op pain, and to help give us time to restart dialysis again.  He is scheduled to be extubated (ventilator tube removed) sometime this weekend.

An IV was actually started on top of Owen's head! (don't worry its pretty common)

Recap on the procedures:
1) Valve ablation: The PUV (the thing that caused all of this mess to begin with) was finally cut.  While this won't reverse any of the urological tract damage that is already present, it will help lower infection risk and further blockage. I can assure you Owen is happy to finally say goodbye to this particular part of his anatomy.

2)Bilateral Orchiopexy:  Testicles originate in the abdomen and usually spontaneously descend through the inguinal canal into the scotum.  Owen's, as with many premature babies, didn't get a chance to do this in the womb, so this procedure is done to manually move them down. 

3) Bilateral Inguinal Canal closure: The main reason for surgery. The canal had to be closed to prevent any more dialysis fluid from filling up the scrotum (creating whats called a hydrocele). Also if the canal isn't closed, there is a chance that a portion of the small intestine may herniate through the canal, possibly causing an emeregent situation if blood supply is blocked.

Since Owen was such a good patient during the surgery, Tyler and I made Owen's first "Build A Bear" yesterday.  Meet "Brother," the newest addition to our family and medical team:

He specializes in interventional radiology, pediatric urology and hugs.
 While this hasn't been an easy few days, we really believe that this is the turning point for Owen's homecoming!  All we have left is to get Owen caught up on his feeds and dialysis before being sent home.  While that will still take about a month or so, we are thankful that the major interventions are behind us leading up to discharge. 

Thanks again for the prayers, and look soon for an update about the Cincy Walk for Kids coming up on Oct. 16.

Tuesday, October 5, 2010

Surgery is Scheduled

Owen's surgery has been scheduled for THIS Thursday, Oct.7. The surgery will consist of pulling the testicles down into the scrotum and closing the tunnel that has remained open. We will have to back off dialysis for a bit, and go up slowly once we can restart. Hopefully we will be on the home stretch again once we get going!

Please pray for our surgeon. Pray that the Lord is anointing his hands, as well as the nurses accompanying the surgery. As you can imagine, it's very difficult to send your 2 month old son into surgery. This will be his 3rd major operation since birth, on his 2 month birthday.

Pray that Owen will not be in a lot of pain after surgery and will be able to be taken on the ventilator quickly. Please pray that he will not face any complications during surgery and will recover wonderfully!

Although we appreciate all our doctors and nurses, our faith and hope remain in the Lord. He holds all power to heal Owen. We know that the success of this surgery will attributed to the work of the Lord through our doctors.

The surgery is set for 3:30PM, Cincinnati Time.

Thanks for all your prayers, we know the Lord will protect Owen.

Friday, October 1, 2010

A Road Block...

So it looks like we won't be going home October 25 after all. We aren't for sure when we will leave, it will likely be sometime mid November.

The reason why? Surgery.

Yes, Owen must endure yet another surgery.

When Owen was born his testicles had not dropped into his scrotum. (Common for premature boys.) The doctors had hoped that they would descend on their own. Well, they haven't and they're causing some problems.

Basically, there is a tunnel that leads from the abdomen down to the scrotum, in which the testicles show fall down and then the tunnel closes. Well, Owen's testicles are still in his abdomen and the tunnel is still open. Dialysis consists of letting large amounts of fluid flow into the abdomen area, sit a while, and then drain out. This is where our problem is. The fluid keeps going down into his scrotum, causing a lot of swelling and making our dialysis somewhat ineffective.

The urology team does not want to do the surgery until November 5. They would prefer Owen to be a bit bigger and they are also giving him hormones now that could help the testicles drop. If not, then they will go in, pull his testicles down and close the tunnel. Sounds easy, right? Well, as with any surgery there are risks. Risks of infection, damage to the testicles, and of course the fact that Owen will have to be placed on the ventilator again.

We had a meeting today Becca's the kidney doctors are hoping to schedule the surgery a little sooner than November 5.

So ultimately, we don't know when we're going home. What we do know is that right now Owen is doing well and the doctors are working hard to find the best solution to this problem.

Please be in prayer not only for Owen's healing, but for our nurses and doctors here. Pray that God will grant them wisdom in making decisions for Owen and pray that He anoints their hands with His healing touch.

We will keep you updated as we find out more information. Right now we are waiting until Monday to hear back from urology to see if the surgery date has been changed.

We are so thankful for the care Owen is receiving here, but we are even more grateful knowing that he is being held by the Lord's mighty hand!

Question: How much does Owen love baths?

Answer: Not a whole lot...

Sunday, September 26, 2010

Owen's theatrical debut...

Presenting TEAM OWEN!

What a great weekend!

Tyler and I had the best time with our little boy this weekend, as he is getting bigger and stronger before our very eyes.  He just turned 7 weeks old, and he has already developed quite the personality!  In fact, he is already one of the biggest UK fans around. For example, check out in real time Owen's reaction to the UK game vs. Florida this evening:

A bit concerned before kickoff

I give up!
Another interception?
 While the state of UK's football program might not provide much comfort to Owen, we recently found a cool fundraiser that might: Cincinnati Walks for Kids!  This is an event held on Saturday, Oct. 16, here in Cincy, where teams raise money on behalf of Cincy Children's and walk 1-3 miles in honor of a child that is/was a Cincy Children's patient.  All the money raised by each team gets directly donated back to the hospital to help ensure that every family receives the same opportunity for help and hope like our family has.  

Being the walking enthusiasts that we are, we decided to form "TEAM OWEN" to walk on behalf of our little boy. To join our team (I think each walker is asked to raise $25) or to just simply donate, you can visit the site: http://giving.cincinnatichildrens.org/netcommunity/teamowen

Or you can go to cincinnatichildrens.org/walk and search for "team owen".  Anyone is welcome to walk with us, and if enough people join up we may be able to design some Team Owen shirts as well: (I will let you know the cost per shirt when I find out.)

Owen won't physically join us on the walk, but I can tell you he will definitely benefit from the proceeds raised from this event.  So if you are looking for a reason to get back up to Cincy this it!

P.S. If you haven't heard, the doctors have set Oct. 25 as a tentative discharge date. Please pray for wisdom for the doctors and medical staff as we hit the stretch run and look forward to Owen's homecoming.

Take care everyone!

Monday, September 20, 2010


In the John 11 we learn the story of Lazarus and how Jesus felt of his dear friend, and the healing miracle witnessed by Mary and Martha.

John 11 starts with readers learning of Jesus' love for Lazarus, but word is sent to Jesus that he is sick. It is here that Jesus deliberately does not go to Lazaurs' aid, but stays where he is. He tells his disciples that Lazarus will sleep, but He will wake him up. No one knew that Jesus was actually speaking of death here.

By the time Jesus made it to Lazarus, he had been dead for 4 days. His sisters, Mary and Martha questioned Jesus. Why didn't he come faster? Why didn't he save his friend. It is here where we see Jesus' love and passion for his people. He wept. He cried over the death of a dear friend, just as we would.

BUT....it doesn't stop there. Jesus asks to go to Lazarus tomb and have it opened. Martha questions Jesus, as Lazarus had been dead for 4 days. Then He says it all:

"Did I not tell you that if you believed, you would see the glory of God?" John 11:40

We believe! We believe God is here, ready to do something great in Baby Owen. He, like us does not enjoy our suffering. Rather, He is here to rescue us from our suffering. Believe with us, that God is going to heal Owen. Believe in the name of Jesus that Owen's kidneys will be restored. Doctors will be amazed, and all will fall to their knees to glorify our Lord.

Doctors today have said that their goal for us to go home is about 3 weeks! We are still going up every other day on Owen's dialysis volumes, adding 5ml each time. When he reaches 120ml he will be put on the cycler (machine dialysis) and be on the home stretch! He is at 65ml right now. Please pray for wisdom for our doctors and nurses and that God's timing will prevail as we early await our homecoming.

Such a sweet sleeping angel! Dreaming of his bed at home. :)

Friday, September 17, 2010

Alot Like David

Through streaming tears I watched my son get poked three different times today trying to draw blood from his tiny arm. It is moments like these where I am the weakest. Why would God let something like this happen? Owen is so precious and innocent, and I would take his place in a heartbeat.

David, the author of Psalm 13 speaks right to my heart when he writes:

 1 How long, O LORD ? Will you forget me forever?
       How long will you hide your face from me?

 2 How long must I wrestle with my thoughts
       and every day have sorrow in my heart?
       How long will my enemy triumph over me?

 3 Look on me and answer, O LORD my God.
       Give light to my eyes, or I will sleep in death;

 4 my enemy will say, "I have overcome him,"
       and my foes will rejoice when I fall.

Has the Lord forgotten me? Why hasn't he healed Owen? I so believed Owen wouldn't need dialysis or a kidney transplant. Did he forget me? Has He even been listening this whole time?

BUT- David again speaks to me at the END of Psalm 13 when he writes:

5 But I trust in your unfailing love;
       my heart rejoices in your salvation.

 6 I will sing to the LORD,
       for he has been good to me.

God is good, and He is listening. His love never ends and He is pouring it over Owen. He has blessed me with the most beautiful baby I have ever seen. It is in Owen's eyes that I see the face of Jesus, shining brightly. He hasn't forgotten me, and somehow He loves Owen even more than I do.

In the end, I don't know how long this suffering will last. I don't know if God plans to intervene and heal his kidneys before a transplant is needed. What I do know is that God is here. His presence is so thick around Owen's bed. He has blessed every day, every moment I have with my son. It is in Him where I find comfort and rest. He sustains me and protects Owen. Overall, God remains. No matter what, He is here. And His plan is far greater than mine.

Our time of suffering has been blessed by hearing from others how they have seen God through Owen's story. This is our hope and goal that through this, you don't see us, but you see the glory of the Lord shining through Owen's story. God is good among all, and though Owen would never deserve anything like this, the Lord reigns above us and Owen is preaching the Lord's mighty power and HE will be praised through this time.

When strength has failed, and feet, no longer weary,
On happy errands may no longer go,
Why should I sigh or let the days be dreary?
Lord, YOU REMAIN HERE! Could you more bestow?
-J. Danson Smith

I know that I must remain strong for Owen. He needs me to be by his side, holding him each day and loving him more and more. We both, however need the Lord so much more. Thank you all so much for your consistent prayers and devotion to interceding for Owen. Although the future is uncertain, I am certain of this: the Glory of the Lord will be revealed through Owen's story!

Owen is getting so big! He is much more alert and awake for longer periods of time. Just a precious little angel!

Thursday, September 9, 2010

The Sweet Joys of Motherhood...

As Owen is growing stronger and developing I am able to experience so many joyful  moments with my son. One of them being the first time Owen took a pacifier. Most moms would write this off as any normal baby behavior. With Owen's kidney failure, doctors had forewarned us that he would likely not develop a sucking ability and likely never feed from a bottle or breastfeed. The moment Owen took his paci, I can't even explain the joy that was rushing through my body. Tears, of course, flowed like rain down my face, as I watched my sweet boy suck away! Owen is now best friends with his paci, and has it in his mouth for most of the day.

   Another moment in which my heart almost exploded with joy was when I was finally able to feed Owen a bottle. Granted, he has only drank about a total of 20ml using a bottle, but the fact that he is proving to our doctors he is no ordinary patient is amazing! I managed to keep myself together through his feeding, as we had many people helping us, but I think I was still speechless! :) Owen is fed a breastmilk/formula mix. His milk is fortified with lots of extra protein, calories, and vitamins. Your kidneys actually do more than just make pee...they have a lot to do with your nutrition, growth and blood pressure. So Owen is fed "muscle milk" as we like to call it!

   We were able to remove Owen Foley catheter today! This is the catheter that was in his bladder to let it drain. The catheter was a big pain when we tried to hold Owen, as it was a big tube! The nurses are now doing intermittent cathing, or "straight cathing" where they place a tube that is open at the end every three hours to drain his bladder. Praise God for getting rid of tubes!!

  Please continue to pray for Owen's development and healing. I know that the Lord is here, prepared to amaze our doctors and nurses. He has blessed our time of suffering and I have come to understand what it means to completely surrender all to him. He is loving on Owen everyday and will be here with every step we take. Our journey is only beginning, but the Lord is paving our path before us. Praise God for the healing and development we have seen thus far!

Owen stylin' in his Baby Legs! You can still be cool when you're in the hospital!

Tuesday, September 7, 2010

Happy 1 Month Birthday!

Today is Owen's 1 Month Birthday!

He weighs a little over 7 lbs and is about 19 inches long. He is growing and developing like crazy. His favortie thing: His Paci! It basically never leaves his mouth. :)

Posing for his photoshoot. :)

Saturday, September 4, 2010

Life after surgery

     So as you read in the previous post, Owen has had quite the round of surgeries since birth. However, we have been told that we are in the clear for a few months! Urology is in charge of Owen's surgeries and they have told us that the next surgery will be to ablate, or open the valve that is blocking flow in his urethra. This will be done around 6 months, as he needs to grow a little more.

    SO...this being said we are now just waiting for dialysis to kick in and get going consistently. For those of you on facebook, you might now that this has been a battle since we started. In order for dialysis to be performed the PD Catheter (see previous post for picture or info) must completely heal. The skin around the tube coming out of Owen's belly needs to heal and seal up so the PD fluid cannot leak out. Well, we have had major leakage issues! Dialysis has been started 4 times, this 4th time being our most successful. There is still a small amount of leaking around the site, but the dressing is not becoming saturated, as it has before. So, continue to pray for healing around the site as we Praise God for letting us start again with little problems! Without using dialysis Owen can clear fluid by peeing, but he does not rid himself of the toxins that kidneys are designed to do. Also, they have to monitor how many fluids he is given, thus compromising his nutrition. Nephrologists have decided tolerate the bit of leaking in order to maximize Owen's nutrition and milk intake.

   Speaking of milk, I am taking any suggestions out there on increasing milk supply. Owen has not been able to nurse or take a bottle, but I have been pumping pretty much around the clock...with little success. The doctors and lactation nurses have assured me that it is only stress, but I don't see my stress levels completely decreasing any time soon! I am currently taking Fenugreek and Regalin to hopefully get a bigger supply, as well as pumping every 2 hours, and 4 at night. It's quite exhausting!  But, it's definitely best for Owen, so we will make it work. BUT, we have been told that soon we should be able to try to let Owen nurse! :) His is coming down on his oxygen need and once he is weaned we will start trying feeds. He has had a few days of taste testing and he seems to enjoy it. I am so excited to experience the joy of nursing my son and the bonding time we will have!

   Other news: It's Owen's 4 week birthday!! Happy Birthday Sweet Boy, we love you more than anything.

Thursday, September 2, 2010

The Rest of August..

Finally, by the end of this post we will be up to date with Owen's progress!  After two days in the NICU at Good Sam, Owen was transfered by ambulance to Cincy Childrens.  This was a pretty difficult time as Tyler was separated from Owen for 2 days as she "rested" from delivery at Good Sam. I, on the other hand, had the difficult task of traveling between hospitals to help care for the two people I loved the most. Tyler was finally discharged that Thursday and we were fortunate enough to be admitted to the Ronald McDonald house that same evening.  Now, I can't speak for anyone but myself, but I really thought the RMH would resemble something like a summer camp dorm. I figured the residents would sleep on cots or bunk beds and the house would come equipped with community showers and no air conditioning. I was completely wrong. The RMH is amazing, as we liken the stay to being much like a hotel with the exception that it is much cheaper ($25 a night) and you get fed 1-2 hot meals a day. Plus it is literally one street over from the hospital itself. If you have time, check out the RMH site  http://www.rmhcincinnati.org/ .If you are looking for a charity to donate money/time to, this is a fantasic one to get involved with. We can only begin to speak on the comfort that RMH provides for us during this stressful time.

As one might expect, Owen has already received a bit more medical attention than most babies, but to be honest he has probably had more medical procedures than most adults will ever see as well.  Here is a generalized recap of how August has gone for him:

1)Intubations: to this point Owen has been placed on the ventilator 4 times.  The first time was obviously with delivery (which was accompianed with his chest tube), the following two were from his two surgeries and and the most recent was due to being fluid overloaded.  For first three times, Owen was extubated (tube taken out) within a day or so, but for the most recent time, Owen was forced for be on the ventilator for over 5 days.  One of the consequences of renal failure is the inability to move fluid out (via urine), so the excess fluid in the blood stream has to have somewhere to go.  The fluid starts out by going to different tissues which was what was responsible for Owen looking so puffy or as Tyler likes to call him, the "Michelin baby". The lungs are also considered fair game for fluid to move into, and as a consequence it dampens Owen's ability to breathe.   Eventually Owen began to increase his breathing rate to compensate and he was wearing himself out.  So he was put on the ventilator (to help do the work of breathing for him) this past week and was just extubated on Saturday (Aug 28).

Quick tangent, is there a notable resemblance?

2)Surgeries: At this point, Owen has had 2 real trips to the OR, and they were both during his first week of life.  The first one came the day after he arrived at Children's. This was called a bilateral nephrostomy, which essentially involves taking a tube a placing it in each kidney through his back.

This had to be done due to Owen's urinary tract anatomy. His ureters, (you know, the things that connect the kidneys to the bladder), were badly damaged thus preventing drainage to the bladder.  A nephrostomy allows the urine to directly drain directly from the kidney into a drainage bag. So as the kidneys are allowed to recapture some lost function, the ureters are also allowed to repair themselves to a degree as well.  We are thankful to report that this particular surgery did its job!  Do to the pressure release, the kidneys have picked up their urine production and they are able to drain into his bladder. The nephrostomy tubes were eventually removed two weeks after surgery. (NOTE: even though Owen is getting to the point where he is making as much urine as a regular newborn, it isn't considered "good" urine.  He can't filter the bad stuff nor reabsorb the good stuff, but the fact that his kidneys can sufficently get rid of fluid is GREAT news and will help prevent him from getting more fluid overloaded. Unfortunately, his need for dialysis won't be avoided unless his kidneys begin to filter which at this point is about 15% or so of normal)

This leads us to the second surgery that Owen had: Peritoneal Dialysis (PD) Catheter placement: 
THe left diagram is how the catheter goes into the peritoneum (abdominal cavity) and the right picture depicts what the PD catheter looks like externally (NOTE: the right photo is NOT of Owen)

PD dialysis is a bit harder concept to explain.  You should first understand some basic chemistry.  Water tends to travel to compartments (in the body or outside) that have less water. Or in other words,  fluid always moves from a area of less concentration (more water) to an area of higher concentration (less water).  Why does water do this? Unfortunately I woudn't be the person to ask, but we are thankful it does as this is the basis for the treatment. Check  http://en.wikipedia.org/wiki/Peritoneal_dialysis if you really want a better explanation.  Basically highly concentrated fluid is placed in Owen's PD catheter and allowed to dwell for an hour or so. Water kept in Owens small intestines and other organs is attracted to the high concentration and the resulting infilitrate drains out the same catheter at the end of the dwelling time.  The bad stuff  in Owen's blood that the kidneys would usually excrete also tends to the flow down the same gradient and drains on the outside as well.  The objective of PD is to remove more fluid from Owen than is put in.  This process is occuring 20-22  times per day and it is very grueling to all parties involved (Owen, us, doctors and nursing staff).  Eventually, Owen will be placed on a cycler which performs dialysis over a 12 hour period which can be done from home (thankfully). It won't be until then that Owen can physically arrive at our home in Lexington and we are basically still 2-3 months away from this point.  Part of the delay is the fact that PD catheter has yet to heal completely.  We have tried to start PD 4 times currently, and each time the PD had to be stopped within 24 hours to leaking from the site.  We just started again yesterday, and to this point, the catheter appears to be doing its job with very little leakage!   

This has been a fairly simplified explanation of the last 3 weeks in terms of major procedures. At one point, Owen had 8 tubes sticking out of him! (2 nephrostomy tubes, PD catheter, Foley/urethral catheter, IV line, PIC line, Intubation tube, NG tube).  Thankfully he has since lost the nephrostomy tubes, IV and intubation tube.  At this point, Owen is doing great and is already developing quite a strong personality.  Our hope is that all the major surgeries and interventions are over for the near future, but unfortunately there are often several complications needing surgery in PUV babys leading up to transplantation. 

We are glad to finally be up to date on the blog and can't wait to share our experiences with you guys as they occur!

Sunday, August 29, 2010

August: The Arrival!

    August proved to be our most exciting month....Owen's arrival! Owen's scheduled C-section date was August 30, 2010. However, Owen thought he might like to meet all his fans a little early. :)

    After about 3 days of on and off labor, including medicine to stop labor that made me crazy, Owen entered the world at 11:40 PM on August, 7 2010. Many have told of the "joys of a c-section" having it planned, no labor pains, quick and easy....well not so much for us! We, in fact did endure plenty of labor pains, actually Owen was in the "transition" phase by the time we delivered. Our doctor's words after delivery: " Wow, that baby was coming out! He was very low!"  Our labor was eventful and quite a bit scary, but produced a very special product!

   When Owen was born, we did not hear the beautiful cry we had hoped for. When he tried to take his first breath, his lung punctured a small hole in it. He was immediately intibated and put on the ventilator. A chest tube was also placed into his lung to help relieve the pressure and let his lung close up. Doctors told Michael that he made need to be on the ventilator for 3-4 days, and they weren't sure about the chest tube. After the doctors were finished with me and got my pain medication settled, I was pushed up to the NICU to see Owen. (Michael had already shown me several pictures, but there is nothing like meeting your child for the first time.)

   Owen hadn't opened his eyes yet, but when I was rolled to his bedside and whispered his name, he peeked out with one little eye. Let me say, that was the most beautiful eye I have ever seen! Being able to put into words exactly how that moment felt is impossible. It's almost as if the world around me completely stopped, it was just the two of us. (This happens pretty much every time I look into my sweet boy's eyes!) For over 8 months I loved this baby with all I had in me, prayed for him, talked to him, sang to him, and here he was, right in front of me! All I could think of was how could God possibly love him more than me?

  Owen stayed at Good Samaritan's NICU until Monday morning. Doctors were amazed to see that in less that 24 hours Owen was off the ventilator and breathing on his own, and the chest tube was removed as well. Owen was already proving just how great our God is!

Just seconds after being born!

Opening one eye to see Mommy for the first time. :)

June and July

    We mentioned in the May post that we had met with Cincinnati doctors to discuss possible options for the treatment of Owen's PUV. At first we waited, and then we had the first shunt placement surgery. The shunts were placed into Owen's bladder and left kidney. They worked great! He was draining fluid and his bladder and left kidney were not staying dilated. (The right kidney stayed dilated, but did not get any larger during this time.) This went on for about 4 weeks or so.

     Then we lost the bladder shunt. It's possible it fell out, or Owen pulled it out. The fact is, we lost it. And his bladder started filling up, again. So we had to meet with the doctors in Cincinnati to discuss our options, again. When we met with the doctors we still had a small amount of fluid, and Owen was doing good so this was not an emergency decision. We were about 27 weeks along, so we were almost through the "critical lung development" time. This was great because if we had not had fluid through this time, Owen's chance for survival would have been greatly diminished.

   After meeting in Cincinnati, the doctors told us the decision was basically up to us. We could wait and do nothing. (As if my water had broken and just wait to deliver.) Or we could do another shunt surgery. There was a greater chance of early delivery due to the fact that we were much further along than the first time. We went home with a heavy burden, and not much time to decide. All in all, we decided we wanted to be able to say we did everything we could, and we went in for the surgery.

   Again, the surgery went great, we were discharged later that day. Unfortunately this shunt did not work properly as, it did not work to drain his bladder. Once this was discovered we were admitted to Good Samaritan Hospital on June 22. The decision to go to the hospital was based on the likely hood of Owen sitting or compressing his umbilical cord, and cutting of blood supply. This is a risk in pregnancies with little, or no fluid. By the end of 28 weeks we were pretty much without all fluid.

  At the hospital 3 Non-Stress Tests (NST) were performed daily. This is where the baby is hooked up to a heart monitor and a monitor checking for contractions as well. During the test, the baby's heart is monitored for D-Cells. This is where the heartbeat dips down to below 100 and stays for a bit, and comes back up. By the Lord's provision Owen NEVER had a D-Cell. Although doctors were clear the expected to see them. In fact, Owen was given the "Best Heart Rate on the Floor' award almost daily! The nurses and doctors were always so shocked at how wonderful his NST's were! (What else would you expect from a miracle baby?!)

   So June came and went, with daily NST's and 2 ultrasounds per week. July was pretty much the same, with one exception...the MRI. This was our second MRI during the pregnancy. (The first one taking over 2 hours and NOT a pleasant experience.) This next MRI was done to calculate Owen's lung volumes and place him in a percentile for lung development. Doctors made it clear that this was the number one reason PUV babies did not survive and they weren't overly optimistic about Owen's lungs.

   Well, our doctors should have been consulting The Great Physician because our ultrasound showed that Owen was in the normal range! I can't tell you the shock on some of their faces! However, they never wanted to get our hopes up too much, so we were always warned that this didn't mean everything was 100% okay.

June and July were full of ups and downs, and lots, and lots of bed rest. With August on the horizon, our resting would soon come to an end!

Wednesday, August 25, 2010

May 2010

     As mentioned in the April post, May was a very strenuous month. After we found out that there was a problem from our regular OB we were referred to a high risk OB in Lexington the following day. This doctor indeed confirmed that there was likely an obstruction in Owen's urethra. He then referred us to another High Risk OB in Cincinnati for the following day.

    Our first trip to Cincinnati was very long and draining. We had a high level ultrasound performed in the morning, as well as a very long MRI scan to completely check Owen's anatomy for any other malformations. At the end of the day we met with Dr.C (pediatric surgeon), Dr. P (high risk OB and surgeon) and a few other doctors. During this meeting it was confirmed that Owen has PUV. At the time we were given several options.
1. Do Nothing (which would cause Owen to eventually pass in utero or soon after birth do to underdeveloped lungs)
2. Open Fetal Surgery (VERY risky, in which Owen would have been taken out of my uterus, and replaced after surgery)
3. Shunt Placements (doctors would use a needle to go through my uterus into Owens bladder to place a small tube to allow draining)
4. Laser Ablation (a laser device would be used to go into Owen's urethra to open the valve blockage)
5. Abort

Well obviously option 1 and 5 were totally out of the question for us. We were determined to do anything possible to give Owen the best chance of survival. The doctors then explained to us that the Laser Ablation would not be in the best interest of Owen because of his size. The male anatomy is easy to direct a path through his urethra past 20 weeks. (We were a little over 20 wks at the time.)
    They also explained to us the dangers of the Open Fetal Surgery. This is still considered experimental, and although some do not survive the surgery, it can also be a saving grace for other babies. During the surgery, doctors would actually take Owen out of me, and then open his bladder to the outside of his body (called a vesicostomy). This can be performed once the baby is born as well. This would allow any urine produced in his kidneys to drain down his ureters and when it reached his bladder it would drain outward, thus enhancing his lung development and reliving pressure build up in his urinary system. However, we were told this was also not right for us at the time. As Owen had an adequate amount of amniotic fluid (12cm).
   The Shunt Placement surgery has less of a risk than the Open Fetal Surgery, however it also comes with it's own complications and dangers. Any time the uterus is tampered with leads to an increased risk of premature delivery. The shunt placement is also not a guarantee to help the kidneys. It is primarily done to allow the outflow of urine to aid in lung development.

   After learning all of our options we were shocked to find out that the doctors had made the decision to wait before doing anything. This was a very hard pill to swallow. Why wait until things get worse? Why not prevent them? The doctors ultimately decided that since Owen had enough fluid, they wanted to leave things alone for the time being, instead of performing a risky surgery. In all, the risks did not outweigh the benefits.
    So after our trip to Cincinnati we were scheduled with weekly meeting with Dr. M, our High Risk OB in Lexington. Unfortunately, upon our next visit with him it was discovered that the amniotic fluid level was dropping. Dr. M performed 3 different bladder taps (like an amniocentesis, except the fluid is taken directly from Owen)to actually pull the the fluid out. This was done using a very long needle and sticking it through my uterus into Owen's bladder and pulling the urine into a syringe. This was done to actually test the electrolytes in his urine to see how his kidneys were holding up. After the 3 tests, it came back with mixed results. We were still determined to do everything possible to help save Owen.

   This led us back to Cincinnati to prepare for Fetal Shunt Surgery. Dr. P performed the surgery with no complications. A shunt was placed into Owen's bladder and left kidney to allow them to drain and bypass the blockage in his urethra, thus replenishing the amniotic fluid. Recovery went well, with only about 4 hours of mild contractions, and then the uterus was fine! We returned home to weekly visits to Dr. M (Lexington HR OB) to check the fluid status. I (Tyler) was able to finish out the last 2 weeks of school on a mild bed rest. This was very nice, as we had gone through a lot of resting and doctors appointments so a sense of "normalcy" was greatly appreciated.
   We were sailing along through the end of May, which we thought was very promising. June, however brought on it's own list of complications...

What is PUV?

This may be quite a long post...

It was quickly confirmed that Posterior Urethral Valve was the diagnosis, so what does PUV mean?   Well to understand the pathology of the urinary tract it is probably easiest to first go through normal urinary anatomy (it helps to look at the figure at the top of the page).

Fetal kidneys (which make urine after birth) are responsible for making the amniotic fluid in the womb.  The kidneys send the fluid down the ureters into the bladder, and then the bladder sends the fluid out through the urethra (penis).  The amniotic fluid surrounds the fetus and allows for fetal support, but also stimulates lung development by swallowing  (yes, the baby essentially swallows his own pee!).  At birth the kidneys obviously become responsible for removal of waste products and fluid regulation.

Basically an abnormal tissue formation is acting like a one-way valve in the baby's urethra, which is causing the obstruction. This leads to several consequences, but it can basically be divided into two broad catagories: everything that happens anatomically distal (after) the obstruction and everything that happens anatomically proximal (before) the obstruction.

Distal problems:
The major problem is oligohydraminos, which is a 5 dollar word to describe low amniotic fluid.  The obstruction prevents amniotic fluid from escaping the urethra so immediately the baby is much more compressed while in the uterus.  This causes minor/major phyiscal abnormalities that include club feet, smushed up facies and even dislocated shoulders.  If you can imagine being covered in shrink wrap without the ability to maneuver to change positions, that is what Owen was going through, and he was in the same position for at least 20 weeks of the pregnancy. 

With all that said, Owen luckily only has some slight leg malformations.  They tend to curve in and his feet  (especially his toes) interlock monkey style, but physical therapy is already meeting with him 3 times a week to help straighten everything out.   The major problem with oligohydraminos is lung hypoplasia, or underdevelopment of the lungs (remember, swallowing amniotic fluid stimulates lung development).  This is by far, the most severe consequence of PUV and is the major reason PUV babies do not survive upon birth. If surgical intervention had not been performed on Owen there is good reason to believe he would not have survived the first few hours of birth and it is because of this lung issue.

Proximal problems:
Since the fluid can't get out the urethra, the fluid and pressure has to go somewhere, so everything abnormally moves back up to where it originated.  Beginning with the bladder, fluid fills up to a point where the bladder becomes much larger than average size.  The bladder is made out of muscle and just like any muscle that is stressed (bicep, heart, etc), the muscle compensates by getting larger (AKA hypertrophy).  So the bladder wall is thickened which may lead to more long term (but not emergent) issues like inability to urinate without the aid of catheter or leaking periodically throughout the day.  The bladder problems may be life long but we really won't know for a few years.  Moving further back, the ureters are dilated which compromises the drainage of the kidneys into the bladder. One of Owen's surgeries during his first week of life actully worked to relieve pressure off his ureters to see if they will work again.  Finally the kidneys are the final resting place for the pressure and fluid leading to a condition caused hydronephrosis. This basically means the kidneys are much larger than they should be due to such a high accumulation of fluid.  This results in kidney damage, and if left unrelieved long enough, end stage renal disease/kidney failure.  Unfortunately, it appears that although Owen avoided the dreadly lung hypoplasia , he couldn't escape the damage inflicted to both his kidneys.  As this point, the only true curative treatment for Owen's kidneys is a physical transplant, which we will described more later.

Overall PUV is something that randomly occurs in about 1/8000 live births. It happens in males only and the severity flucuates depending on the case.  Clinically, symptoms may range anywhere from never being diagnosed due to being asymptomatic, to death within a few hours after birth due to inadequate lungs.  Obviously, Owen is on the more severe end, but we thank God everyday for the lungs he is more than blessed to have!

Sunday, August 22, 2010

April 28, 2010

A few housekeeping issues first:

1) Why the title "Knowin Owen?" First of all because I only thought of "Growin Owen" after the the blog was already published, but also because we really want anyone who cares about Owen to have a way to see his progress.   We realize that it isn't possible for everyone that knows us to visit us in Cincy, so this is the best way to follow us along the way.  Tyler and I want to be as transparent as possible about our thoughts, feelings, fears and celebrations as we start along Owen's journey, and so we want to be the first ones to say we often feel like kids trying to raise a kid. Any words of encouragement or prayers for Owen are always appreciated and encouraged as they help strengthen the faith of our family. We can't wait to show Owen in a few years just how many people cared  and loved him enough to also experience his journey with him.  That is what  "Knowin Owen"  is all about!

2) Since not everyone knows our story, we figured we would go back and start on April 28, the day we found out something was wrong with Owen. The next few posts will also focus on the past to help get everyone caught up to where we are now.  Tyler had  her 20 week ultrasound appointment, and the baby looked very similar to one seen in the picture (17 weeks).  If you look at the 17 week U/S picture of Owen, you may notice the round black circle  near his bottom.  We didn't know it at the time, but this was indicative that there was some type of malfunction in Owen's urinary system. The black color seen in  the circle represents fluid (in Owen's case urine or pee), and there was some type of abnormal dilation (expansion) of either Owen's bladder or one of his kidneys. In case you were wondering, this wasn't diagnosed when this picture was taken because the ultrasound was at a day spa to determine the sex of the baby (which was a BOY :) ), and unfortuantely the U/S techs there are only trained to tell you one of two things: boy or girl. I also haven't seen enough ultrasounds in my medical training to interpret radiographs, so I simply thought his bladder was full.

To my estimation, there are only about three dozen or so unfading memories that last a lifetime (maybe even less). I'm not just speaking on memories, but personal events that leave such an imprint in your mind that no detail is ever lost. Through the years your mind will always hold on to what you were doing, saying, thinking, wearing during that particular event.  Getting married is one such moment, as is seeing the birth of your child, or a catastrophic event like 9/11.   Finding out with Tyler that something was wrong with out unborn baby, I knew this would be day we would look back on for the rest of our lives.  For better or for worse, our lives were going to be changed. How? We didn't know then and we really still don't, but we knew the effects would be felt forever. Precious few moments in our lives have such the impact as that. It was just like you would see in a movie: the ultrasound tech (again, different one than from the day spa), saw the abnormality on the screen and tried to flee the room the room as quickly as possible (and also just as quietly, as if trying to escape without us noticing)  to grab Tyler's OB (doctor for women) to bring into the room.  As this point, Tyler and I are left in the room by ourselves to contemplate what just happened.  No explanation was given as to why the U/S tech suddenly bailed out of the room.  Did she see something wrong?  Did she have an emergent personal phone call? Was her lunch suddenly not agreeing with her?  Our minds raced, but we ultimately knew when Tyler's OB showed up something was wrong. 

Owen at 17 weeks
The radiograph proved to show that Owen's left kidney was extremely dialated.  It appeared at that point to be taking up a large portion of his abdomen area, even overtaking the size of his bladder.  30 mins later we were sent home with a referral to a high risk OB.  All we had was a working diagnosis of "Posterior Urethral Valve Syndrome causing Lower Urinary Track Obstruction" (which I will get into with the next post).  We had no ideas about interventions or long term consequences of PUVs, but we were getting ready to become experts in the subject by the end of the following month.  April 28 may have proved to be the beginning, but May was by far the hardest month we have had to face up to this point...

Its about time...

Hello everyone,

After much discussion, we have finally decided to start up a blog!  Our goal is to create a venue for  anyone that wants to keep up with Owen's progress or for anyone that is curious about the condition of posterior urethral valve or end stage renal failure. This is also a blog based on our faith, and how we hope that God is reflected by our reactions to both the joys and struggles that are seen along this journey.  Thanks again for dropping by!