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!

Believe

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.

**GREAT NEWS UPDATE**
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. :)



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!



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!

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. :)

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.

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!