Thursday, April 28, 2011

One Year

The feelings are still so raw, and they still cut so deep. I can remember everything about the afternoon of April 28, 2010. I remember what I was wearing, I remember leaving school early, so excited for our ultrasound. We were running very late, and it just so happened that our technician stayed a little later (which she doesn't usually do).

I remember the silence. I remember asking "What are those black dots?" And then I remember: "I'm going to go get the doctor."

My heart broke into a million pieces. Panic doesn't describe it. Devastation, fear, anxiety. I remember looking at Michael, pleading for him to tell me everything was okay.

It wasn't. Our doctor came in, and quickly shared words with our technician and was talking so fast I still didn't catch what was wrong. She then explained that Owen's left kidney and bladder seemed to be very full. (The black dots I saw.) She gave us some time alone to sit and digest, before taking us back to explain what all was happening. She sent the images to a radiologist.

I cried. Hard. For a long time. She assured me that she would refer me to the best High Risk doctor she knew and often these problems solve themselves, or there are interventions to help.
I remember not being able to call my family. I remember the first time I talked to my Mom and not being able to control the sobs coming from my eyes. My body just shook uncontrollably.
It didn't matter. There was something wrong with my perfect, growing boy. That night every kick I felt from him brought tears of anguish, fear and worry. I loved him so much. How could this be happening? It wasn't real.

This is a picture of Owen at 17 weeks. We went to a fun "gender reveal" ultrasound, not performed in a doctors office. The lady told us it looked like he needed to empty his bladder (black circle). We thought nothing of it. Three weeks later at our doctors appointment, not only was his bladder full, but also his left kidney.

I remember hope. I remember being covered in prayers. I remember words of encouragement and prayers sent to me daily.

I remember this blessing. 
So it was a year ago. And today will be filled with such joy as I hold this little boy who has fought for his life since before he was even born.

I will praise the God who loved Owen enough to save him, and who loves me enough to bless my life with this miracle.

But, it will forever be day that brings tears. I cannot, and will not to imagine what could have happened to Owen. It is by the grace of God that he is here, sharing his story with many who love him and have yet to meet him!

He is a testament of faith, perseverance and a blessing of trials and suffering. After we found out about Owen's condition I started scouring the Bible for promises and miracles. I wrote down every verse of hope in affliction and promises of deliverance I could find. I have many journals full of verses and notes to Owen. One journal contains letters I wrote to him in the hospital, as well as on each monthly birthday. It also has some of my favorite verses that carried me (and still do) through this trial. I pray that Owen will grow up and continue to leave a legacy as he is now. I've prayed that he will grow to be a strong Man of God, who loves and fears the Lord. And that his story will continue to touch the lives of those who hear it.

I could not have made it though this year without the Word of God. Although there have been many tears, and days filled with sinful doubt and worry, my God has conquered this! HE has sustained me and has blessed me beyond anything I could ever have imagined. I have longed to be a Mommy since I was a small child. Never, did I expect that my life as a Mommy could be so blessed and filled with such joy.

Thank you for your prayers over this year. I know many of you have followed Owen's story since we found out about his condition. I pray that as you have watched Owen grow and prosper that your life has been blessed and that you, too have seen the Glory of the Lord.

What a difference a year makes....

I am still confident of this: I will see the goodness of the LORD in the land of the living.
Psalm 27: 13

Friday, April 22, 2011

Here comes Peter Cottontail...

Well, Owen isn't going to make it out to have his Photo OP with the Easter Bunny this year. (Call me crazy, but the thought of sitting him on that stuffed animal with the millions of germs soaked in there gives me huge lump in my throat!)

SO...we had our own little photo shoot at home! :) And I must say, out of all the crazy holiday pictures I've taken of him, and silly headbands I've made him wear-these by far turned out the best! ":)

So we started out sitting up, but for some reason he was just too excited and happy and he kept knocking himself off balance!

So we moved to our favorite blanket...

You can't get Easter pictures like this at the mall! :)

He kept laughing at his eggs!

So, all in all, a good photo shoot with "professional Mommy" haha. Sweet Owen is such a trooper and *usually* cooperates with my crazy camera obsession.

Owen is still doing great with dialysis and is tolerating the increase of catheterizations on a daily basis. We are cathing morning, lunch and bedtime now. We are also doing two rounds of the "bladder flush" with the antibiotic through the catheter. He had some cloudy urine earlier this week and unfortunately has a UTI. (He is of course, more prone to these with being cathed daily) The poor guy is also suffering from a nasty cold that Pops, Marlee, Uncle Will, Mommy and Daddy all shared. Sadly, we shared it with Owen, too. He's on the mend, but this pesky cough is driving him crazy!

The transplant team has called and confirmed that our surgeons would like to test other donors for Owen. Although it's not a "total rule out" they feel it's possible to find a kidney more suited for Owen's size now. However, in the future, when Owen is bigger should he need a new kidney (we've been told he will likely need another one in 20 years or so), then Michael could be considered then. However, we've also been told  by other "kidney families" that it's possible with 2 arteries, so we will continue to pray for wisdom and guidance for our surgeons. But, my selfless, gracious Mother (who happens to be Owen's blood type) is going to begin the workup for transplant. This will start with blood draws for both Owen and my Mom. Please continue to pray God will guide our steps and reveal the best donor for Owen.

We will be enjoying our Easter weekend with family, and praising our Savior for His sacrifice. I have to say, in years past I have never really thought about Good Friday and Easter and honored them as I should. It's always been a holiday celebrated in my house and we observed Jesus' death and resurrection. But, this year it's different. I woke up today and immediately my thoughts were on the cross. Thinking, that today is the day that Jesus died for me. And I began to think of the pain God must have felt not only watching His Son suffer a horrible death, but also knowing before hand it would happen. I have often thought about the pain our Father felt watching Jesus suffer, as I would watch my own son suffer through surgeries and procedures. And how my heart would ache to help my baby boy. The Lord has shown me true, undying love and has brought me to my knees in reverence of the Cross. So this year, it's with a grateful heart I'm praising God for His will. I don't understand it, but I'm certain it's far better than mine. I will lift my hands to a God who hears the cries of His people, and answers them, when the time is right.

The video above is 6 mins long. But worth every second. Worthy is the Lamb is one of my absolute favorite worship songs. (Caution: the video is scenes from The Passion and are quite graphic, but can only help us truly see the suffering Jesus endured for us.) I can remember the tears flowing down my face the first time I heard it. HE is worthy of our praise and adoration, not only Easter weekend, but everyday. Thank you, Lord for opening my eyes to this blessing of suffering you have chosen for me.

Have a wonderful Easter, and thank you, thank you for praying for my sweet boy. Through Owen, I am reminded daily of how great our God is!

Saturday, April 16, 2011

We've Only Just Begun...

Yesterday was a very, very long day for our family. Owen had 5 different appointments in Cincy to check his progress.

Let's start with Nephrology. Owen is doing wonderful on dialysis! His labs are looking good and we were able to take him from 14 hours per night down to 13. :) Hello evening walks this summer! :) We are introducing sodium phosphorous to his medication list again. If you've been following long, you know that this is the medication that sent him to the hospital one month after our discharge in November. Owen needs phosphorous. His levels are very low, which can hinder bone growth. So his is on a tiny, tiny dose. (.3 ml) and we are checking labs on Tuesday. Please pray this will be the correct dosage for his body.

He is up to 19 lbs and grew almost 3 cm this month! This is great because he had only been averaging 1-2 cm the past few months. He is a little over 26 inches. :) His weight is starting to balance out. The past few months his weight vs. length on the growth curve was a vertical line. :)

His development is coming right along as well. He is a busy, busy boy, having 4 therapy sessions per week. He meets with physical therapy twice (1.5hrs), occupational therapy once (1hr) and speech once (30min). Our therapists are so proud of how he is growing and developing. He is very motivated to learn new things and get his "workout" each week! He is very close to sitting up alone. Sometimes we put the boppy in front of him, so he doesn't squish his belly. I would say in a month or so he will be flyin' solo!

Owen still refuses to roll over. Which, I don't really blame him. It's hard for him to be on his tummy because of his dialysis catheter. He also has severe reflux, so he prefers to be upright. So, it looks as if he will sit up before he can roll...he's never followed the "books" anyway. :)

Owen's therapist also decided he is now strong enough to play in his exersaucer!

I think he likes it! :)

Owen also had a few urology appointments yesterday. If you remember, Owen's loss of kidney function was caused by a blockage right below his bladder that did not allow him to pee in utero. This caused all the urine to back up into his bladder, then up his ureters (tubes connecting kidneys and bladder) and then back into his kidneys. This not only "killed" his kidneys, but also caused major damage to his bladder and ureters. So yesterday the doctors were testing Owen's bladder for high pressures and to see if it still had reflux, backing up into his ureters.

Unfortunately we did not get the news we were hoping for. Owen's bladder can only hold about as much urine as a newborn. From there, it will spasm, and empty a little, but also reflux back into his ureters. Owen's urologist was very clear he is no where near ready for a transplant. Without a healthy bladder, the transplant will be useless, as the bad bladder will damage the new kidney.

So what do we do from here? Well, we are increasing the medication that "paralyzes" his bladder. They want to stretch it as much as possible, without it receiving pressure to urinate. We are going to to this for 3 months. Then, it is possible we will begin to bladder washes. We will be infusing saline into his bladder each day, adding more each time to stretch it. Hopefully, the medicine will be working and it will "hold it in " for a period of time until we cath him later.

Then, there is yet another surgery. It is likely Owen will need a re-implantation of his ureters. They are so twisted and stretched they just aren't acceptable to place them with a new, healthy kidney. We aren't sure when this will be, or if will for sure happen. But, our doctors were very clear that you can not underestimate how important it it to have a bladder ready for transplant.

Our urologist also wants us to start cathing Owen more frequently. This is in part, because he would rather him not urinate. But also so Owen sees it as part of his everyday life. Our doctor is preparing us to cath Owen for life. It will be too risky to rely on his bladder to completely empty. They have assured us that he will still live a normal life, and learn to do this on his own quickly. Although Owen is quite used to us cathing him now, it's a very hard pill to swallow. But in the grand scheme of things, it's so very minor. If that's what it takes for Owen to live a life free of kidney disease and dialysis, I think we can handle that.

Many of you know that Michael also had his CT scan yesterday to look at his kidneys for possible donation. Unfortunately this was also not the news we were hoping to hear. Michael does have two healthy kidneys, but he also has some abnormal vessels. He has two arteries going to each kidney (they prefer one) and his his right kidney has an extra vein. So his left kidney will be the only option, but again , the two arteries make the surgery more difficult. We have not heard from the actual transplant surgeon, but our nephrologists warned us that it is likely not the optimal choice. Please, please pray for wisdom for our doctors as they make this decision. Also, pray that Michael and I will not be burdened by worry as we wait for a decision.

So all in all, this was a very long and trying day. However, we cannot loose sight of how extremely well Owen is doing right now. He is doing so much more than many doctors ever predicted him to do! I don't understand this suffering. And yes, I have begged and pleaded with God for a "break". But, this is our journey and in turn our blessing. And yesterday we were hit again, with just how long this journey is. BUT, it will NOT steal our joy. Our hope is still in a sovereign Lord who cares for His children.

Please continue to pray for sweet Owen. Pray specifically that the increase in medicine this month will relieve his bladder of the reflux and surgery will not be necessary. Continue to boldly ask God for a miracle.Not a day goes by that I don't speak healing over Owen in the name of Jesus. I believe, I know God can completely take this away from Owen and make his body new. I also know, that whatever the Lord's choice, I choose to follow Him. It is only by His grace, that I have faith to believe and serve a mighty God who works miracles.

The night that Owen was born was very scary and happened so very quickly, but I can remember very clearly being on the operating table and reciting one of my favorite verses over and over as the doctors worked to pull Owen out.

Now then, stand still and see this great thing that the Lord is about to do! 1 Sam 12:16

When you think of Owen, and remember to pray for him, please speak this verse loud and clear. I was confident at his birth that we would see the glory of the Lord and I remain confident that He will continue to reign over Owen. His glory will be revealed in Owen's healing, whether through divine intervention or through  the careful hands of our surgeons. No matter what, God still doing great things in Owen, and revealing more of Himself to me each day.

Monday, April 11, 2011

8 Month Update, and some news....REALLY good news!

Well, it happened. My newborn baby turned 8 months old. It feels like yesterday that I first held his tiny body in my arms! He is now 2/3 of a year old. And yes, in case you're wondering I've already started planning his 1st birthday party. :) The way I see it, you can NOT celebrate this miracle of life enough! So he will have one spectacular party!

I can't believe I am the mother of an 8 month old! He is growing so fast, and developing such a wonderful personality. He loves, loves laughing with his Daddy. One of my favorite times of day is when Michael comes home and Owen sees him for the first time. It's amazing how Owen knows us and loves us and he is finally able to show us! He loves to play tickle games with Daddy and he just squeals with delight when Michael plays the "I'm gonna get ya..." game! I'm convinced there is no sound sweeter than a baby's sweet laugh.

Owen is a Momma's boy through and through. :) He isn't quite going through separation anxiety, but he is very leery of new people. He doesn't cry or throw fits, he just doesn't "perform" right away like he does when it's just Mommy and Daddy. It could also have something to do with the fact that he meets  a lot of new people at the hospital and doctors offices, and they aren't always pleasant experiences. :(

BUT Owen is doing great! We are still getting labs every 2 weeks. We are doing all our labs here, at UK. We have found the best nurse that just loves Owen! She gets the same vein each time, and Owen has not cried the past 3 times we've seen her! All his labs are looking great, they've actually been getting better each time! Our doctors are happy with a BUN under 75-Owen is 35! That's great! We are so thankful for all your prayers and sweet encouragements. Please continue to keep Owen in your prayers. We will be returning to Cincy this Friday for his monthly nephrology check up, but also to see urology. It's going to be a very long day. Urology is going to be a lot of testing on Owen's bladder to see if some of the damage from utero has been reversed. Basically, if his bladder isn't in good shape then he could need augmentation surgery. We don't want to transplant a good kidney with a bad bladder, we will end up where we are now. So pray that everything will be in tip top shape as far as urology goes.

Now, on to the good great news....

Michael has passed Phase 1 of our transplant process!

We waited an incredibly long time to get our results. So I finally called our transplant coordinator last Tuesday because I just couldn't wait any longer! She said Michael is actually a really good match so far!

Why do I say so far? Well, because we have more testing to complete. He hasn't been cleared "the donor" just yet. Basically, he passed the blood cross matching and tissue typing. This was actually a big step because Owen and Michael are not the same blood types. Owen is A and Michael is O (universal donor). Owen had a blood transfusion when he was about a month old after a surgery. So the fear was the he could have built up antibodies against other blood types. Praise God that he can accept Michael's blood! The tissue typing is actually not a necessity in a kidney transplant, but the they check it anyway for some reason. There are 6 factors to match and Michael matched 5! (He would automatically have 3 because he is his Dad)

So this Friday Michael will also be having some testing done in Cincy to move on to Phase 2 of our transplant process. He will be having a catscan to check:
                                      1. That he does indeed have 2 working kidneys (some are born with only 1)
                                      2. To look at the number of vessels connecting his kidneys (small ones and too
                                      many are not good to transplant)
So please be in prayer that Michael's kidneys will be appropriate to donate to Owen. Also, continue to pray for our family as we go through this process. Although we are so excited to be moving on with transplant, it is still our hope and prayer that God will intervene and heal Owen. Pray that our faith is unwavering and we will continue to be strengthened each day in our walk as we strive to glorify God through this time.

I want to share a passage from my devotional this week. I've re-read this several times and it has really hit home with me:

By George Matheson - a well known preacher from Scotland:
My dear God, I have never thanked you for my thorns. I have thanked you a thousand times for my roses, but not once for my thorns. I have always looked forward to the place where I will be rewarded for my cross, but I have never thought of my cross as present glory itself. Teach me O Lord, to glory in my cross. Teach me the value of my thorns. Show me how I have climbed to You through the path of pain. Show me it is through my tears I have seen my rainbows.

* Just so you know, George Matheson was blind. :)

So today I am thanking God for my thorns, for if it weren't for them, chances are I would not be snuggled in beside a sleeping 8 month old miracle. :)

This is the confidence we have in approaching God: that if we ask anything according to His will, He hears us.
-1John 5:14