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!