Monday, January 31, 2011

Got Pee-Pee?

Got pee? Owen does!

You may find it odd that I am posting about my son's urine. Well, as you may or may not know, Owen's kidney failure is a result of a blockage in his bladder that originated during fetal development. So not only does he have major kidney issues, but also bladder and urinary tract issues.

Owen is on a medicine to "paralyze" his bladder. It was so stressed and over worked in utero that it became very thick and enlarged. We were told that Owen would likely never urinate on his own. We currently catheterize him in the morning and night to get what urine he makes out of his bladder. During his night time cath we do a "bladder irrigation" in which we hook up a syringe to the end of the catheter and flush in an antibiotic to stay in his bladder over night. This will help prevent urinary tract infections. When we cath him in the morning we get out the antibiotic. Or so this was the plan...

Until Owen decided he would pee-pee on his own! Owen has been having wet diapers and going potty on his own, especially in the bath tub. :)

Tonight after our night time cath Owen decided he didn't want the antibiotic in him so...he peed. All over Mommy and the bed.!
Oops! Sorry Mommy!

The evidence...who would have thought I would ever be so excited to have my son pee on me? :)
So tonight we are praising God for once again, doing what we were told could be impossible. I can't wait to tell our urologist that Owen pees on his own..even with a "paralyzed" bladder!

Luke 18:27
"What is impossible with man is possible with God."

What a blessing it is to play with this silly boy all day! :)

Monday, January 24, 2011

Two Gold Stars and Some Taste Testing...

On Friday we made the snow covered trek back up to Cincinnati for two doctors appointments. Pops (my Dad) was gracious enough to plow the roads in his big truck and accompany us on our visit! One appointment was with an orthopedic doctor (bones) and the other with our nephrologist for our monthly dialysis check up. It was a long, long day but sweet Owen was such a trooper. Not to mention he slept until after 9am two days in a row! :)

Our first appointment was with orthopedics. When I was pregnant with Owen, I has lost all amniotic fluid by about 27 weeks. This not only causes issues with lung development, but also with babies' bone development. Owen was very smushed, almost like being wrapped in Saran wrap. Because of this, many babies develop club feet, or an abbreviated version of club feet. Since birth, Owen's feet have been turned in. This is when we coined his "monkey feet" labeling. The turning in has been improving with time, working with PT and OT and finally being able to bear weight on them! Orotho had done x-rays of Owen's feet when he was in the hospital and this was a follow up visit from that.

We are so thankful to say the doctors found NO EVIDENCE OF CLUB FEET!

Yay! They were very impressed with Owen's range of motion and said when the time comes, he should have NO trouble walking. :)

At this appointment I also asked about a helmet for him. Not because he is cruising through our house or anything...because he has quite the flat head in the back! Our doctor was very firm in letting me know that the research he has done does not prove the necessity for a helmet. He said with or without a helmet his head will round out on its own. Also, Owen is just now starting to do more activities that don't require him to lay flat on his back. So no helmet for us, yay!

Our second appointment was with our wonderful nephrologists to check up on our dialysis. After a lengthy blood draw.....Owen's labs look great! :) They made no changes to meds or his dialysis prescription.

There was one change though....Owen's calorie intake. Basically, Owen is fat. haha (For those that know me well, you know I have always been obsessed with fat babies and always wanted one!) We are going to be cutting back on the number of extra calories added to Owen's milk. He is still getting strictly breast milk (Thank you to those that prayed for my pumping...I think I could open a milk store now!) with added protein and formula for extra calories. Apparently kidney babies usually have difficultly gaining weight....hmmm...not us! So basically instead of 2 Tbs we are doing 2 teaspoons.

Praise God Owen is growing and gaining weight! I love that our only "issue" was the fact he is growing so well! Owen's length is not moving as quickly as his weight. This is very common for kidney babies, as many actually go on the growth hormone shots. At this time Owen's growth is steady enough that he does not qualify. If at a time he does, it will be something to discuss. We need all the extra room we can get to hold that kidney!

So that was two visits and two gold stars...Way to Go, Owen!

Owen and Pops. Even after a very LONG day in Cinci Owen was still smiling!

Now on to some taste testing....

Owen has been given the "go ahead" to start eating solids! It's still a little bit early. Our doctors said 4-6 months is the range to start, with 4 being a bit early. Owen will be 6 months old at the beginning of February, but his age is "adjusted" 6 weeks for being a premie. We have to be very careful with what we feed Owen. Potassium is filtered through your kidneys and if it gets too high serious problems can occur. So no bananas, prunes or squash here!

Right now we are just trying cereal. This is really just meant to be for a fun experience for Owen. He will still need all his milk and we will continue to increase the amount of milk he gets. Although he is not orally aversive, he will not take all his nutrition by mouth. Many babies like Owen have severe oral aversions and gag when anything is put near their mouth. We are so blessed that Owen loves putting things in his mouth!

So the cereal went okay. It was only our first time. I think we recycled a lot of it, as it kept coming back out...but we will try again!

He wasn't too sure what this new stuff was at first...

But it couldn't stop him from sharing that sweet grin!
So we will be trying cereal for awhile and then moving on to green beans and carrots. Oh yummy!

Thanks for all the prayers for Owen. His development is impressing all his doctors. Our prayer has always been that The Lord would make the doctors be in awe of His great works. He has been doing this since day one!

Our doctors are starting to talk about doing some transplant testing. If all goes well and Owen continues to grow so well it looks like transplant will be before he is 2 years old! Please be in prayers that God's hand is just covering this process. He already has the day planned and donor ready, and I pray we follow His lead. Please pray the Lord is preparing the donor (hopefully Michael) and preparing Owen's body.

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

Monday, January 17, 2011

Warning: Your cheeks will hurt after watching this!

About a month ago Owen started laughing. Literally the sweetest sound I have ever heard! I can't tell you how many times I've cried listening to this sweet boy be so happy! It's so nice to see him happy and enjoying life. He is after all, a miracle! Once Michael and I heard that sweet laugh we would do just about anything to hear it! From singing silly songs, making faces, funny noises, tickling-you name it, we tried it! I think he secretly like making us look so silly!

Here is the first video we made of Owen and his sweet laugh!

THEN....Owen discovered the belly laugh. Oh, there is just nothing like hearing a happy baby! Since Owen is a bit developmentally behind (partially from being in the hospital for 3 months and partially from the kidney failure) he had not built enough muscle to "stand" as other babies do at his age. His muscle tone is very weak, but we just started physical therapy and I think it's working! Right before bath time I was playing with him and just stood him up to see what he would do. Well, did I get the biggest surprise...a huge, sweet, giggly, laugh! He was just so proud of himself! :) So then we started bouncing...and I'll just let you watch the reaction. :)

I told you your cheeks would hurt...all that smiling! :)

Thank you for all your prayers for Owen. It's so nice to see him so happy and developing so well. It's hard to believe that just a few months ago my heart was aching and I was in so much pain, hurting for the life growing inside me. Many, many times I cried out to God, weeping and begging for His faithfulness to be poured over Owen. It is with great joy that I can see His faithfulness each day in the eyes of my precious son. I have come to understand that God ordained and planned my suffering. He wanted to bless me. My eyes have been opened to His Glory and his name will forever be on my lips as I fall to my knees each day to thank Him for His faithfulness and love.

Psalm 27:14
Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!

Thursday, January 13, 2011

Catching Up!

Okay, so we haven't totally left the blogging world, we've just been enjoying every moment at home with our sweet little man!

I guess I should start back in November when we FINALLY made it home!

Owen spent exactly 100 days in the hospital. On Monday, November 15 our doctors decided he was ready to bust out of that place! :) We knew it was coming soon, but nothing could have prepared us for the joy we had walking out of that hospital. However, we are so, so grateful for the love and care provided by our doctors and nurses at CCHMC. But it was finally real. Owen was our's. We could hold him whenever we wanted, we could decided his medicine schedule, when to give him a bath, what clothes to wear. My personal favorite: I could walk wherever I wanted and not have cords tangled all around me and NO BEEPING MONITORS!! It was so exciting, yet a little scary at the same time!

Our sweet nurse took our picture right before we pulled out of the parking lot. Saying goodbye was more difficult than I thought it would be. We were so blessed to have such wonderful nurses and doctors. Many of which became like family over our 3 month stay.

First picture at home! :)
We settled in very quickly and enjoyed some time together as a family. We are so fortunate to have wonderful family members who volunteered to come help clean, organize and help Mommy and Daddy get the hang of the parenting thing. Our small group blessed us immensely by coming to our house the weekend before our discharge and doing a cleaning makeover and some major grocery shopping!

We were so excited to have our boy home we just wanted to show him off. However, we have been strongly cautioned by our doctors to remain at home as much as possible through the winter months. We did take him to our favorite restaurant just to show him off a little! Although we went at about 4pm so we were one of two families there!:)

For some reason Owen just wasn't as excited about going to El Mariachi as we were!
We had a wonderful Thanksgiving....just staying home. :) My family came up and we ordered the Cracker Barrel Thanksgiving meal and it was great! No cleaning pots and pans, just enjoying each other's company, and most especially our little man. :)

Just hangin out with Dad! :)
Things were pretty stable after Thanksgiving. We were getting into somewhat of a routine, his dialysis was going great and we were LOVING being at home.

Then he got sick. Basically what happened is Owen's calcium level bottomed out. He was put on a new phosphorus supplement (because it was low). Well, apparently calcium and phos go hand-in-hand and when one goes crazy the other goes too, in the opposite direction. So Owen's calcium was way low and his phos was through the roof. We had a quick stay in Cincy and then once his calcium was normal again we were free to go!

Still happy even while in the hospital!
We were released (again) from the hospital on Dec. 21. Just in time to celebrate Christmas at HOME! Michael got the normal 2 week Christmas break. So we were able to fit in some great family time. The precious memories made during this time will forever be embedded on my heart. We made cookies, a cake for Jesus, sang songs and simply enjoyed each other. I don't know that I've ever truly known what it means to just enjoy someone. From Owen's cries to his giggles, they still send goosebumps up my arms. These were sounds we were never guaranteed we would hear. So each tiny little milestone is huge in our eyes. I have never felt so blessed and content in all my life. My perspective have been totally changed. I'm not into the latest styles (I stay home with Owen-he likes my sweatpants!) or the fanciest cars or home decor. I'm content to be with my boy. I'm so blessed that I can be with him everyday. I don't want to miss a moment of his development. There is a closeness and bond between a mother and son that is totally indescribable. His bright eyes captivate me. They are so full of life, and wisdom.

Christmas was a time of thankfulness for Michael and I. We were able to start many new traditions that we will continue each year. It is our hope and prayer that Christmas is not so "commercialized" in our home. We want Owen to of course know the meaning of Christmas and we pray that the Lord blesses us with wisdom in raising Owen in a God fearing, God loving and obedient home. We have been researching ways to incorporate Santa with our Christmas traditions, but have Owen know that the words we tell him about Jesus are true, and Santa is a fun pretend part of Christmas. We love Mark Driscoll's opinion. You can read it here: http://onfaith.washingtonpost.com/onfaith/panelists/mark_driscoll/2010/12/what_we_tell_our_kids_about_santa.html

The BEST Christmas Present ever!
We brought in the new year with some great friends. Owen didn't quite pull an all nighter. But that is SO okay with Mommy and Daddy! :)
Lately we've been doing a lot of relaxing, hugging, kissing and laughing. Owen is such a joy and the happiest, most easy going baby! He loves, loves playing with his toys and talking to Mommy and Daddy. His sweet little laugh brings tears to my eyes each time I hear it. We continue to marvel at the majesty of our God and the great works He is doing in little Owen. We stand firm in our faith knowing that deliverance is coming from Owen. Whether it be via transplant or through the miraculous healing hand of God. Either way, we are praying and giving thanks NOW for the healing we will see. Thank you, friends for your prayers, thoughts and words of encouragement. We hear Owen has quite the fan club! :) Thank you for leaning on our Savior and turning to Him to intercede on Owen's behalf.

I'll leave you with a few last sweet pictures this little miracle. Please continue to pray for Owen. Pray that his dialysis will continue to work and that the Lord is planning out Owen's deliverance from Kidney Failure. That He will bless our doctors with wisdom. And continue to PRAISE our Father for the amazing works He has done, is doing and will do in our sweet boy!

"Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." Romans 5:3-4