Then and Now

I couldn't write this post yesterday. In fact, I am having trouble writing it now. But writing it is better than having it bounce around in my head. Ok, that won't totally stop.

Then:       Four years ago, yesterday Owen was 5 weeks old. It was the first of a string of terrible days, but ultimately the worst day of my life. He was not eating well and doing a heck of a lot of spitting up. We were on our second acid reflux medicine, about to switch to the third. I was letting the doctor make these changes even thought I knew it wasn't acid reflux because, well he was the doctor. (I've obviously learned my lesson too follow my guy and question anything that doesn't seem right). The morning of October 4, 2008, Wes fed Owen some formula. We were supplementing the milk he was getting from me. I couldn't do it. I couldn't feed him the formula for a lot of reasons that I know now were pretty ridiculous. I'm thankful that I have an understanding husband who fed him the formula without saying anything to me, and dealt with a bit of crazy coming from his postpartum wife. Owen spit up, and when I can downstairs Wes told me that he had fallen asleep and was in he pack n play. Something made me go check on him. He wasn't asleep. He lay there with his eyes wide open. I turned on the light and saw that my baby was a very frightening shade of grey and non-responsive. Off to the hospital, then critical care life transported to a hospital downtown where he took up temporary residence in the PICU. If you know us, you know that this was merely the beginning of a very long road. We have not reached the end of the road, but feel blessed that the life threatening stuff is over. We feel especially blessed to have this brave little boy in our lives. He makes us laugh every day and has taught us things that we certainly didn't ask to learn, but we are better people for it.

 
Now:       Owen celebrated his 4th birthday at the end of August. He is healthy and thriving. He is loving his new school and doing so well. When I meet new people and something comes up about Owen's birth defects, the most common reaction is shocked. (This has happened a lot recently when I talk about our Walk for Wishes team. I'll be blogging about that very soon.) Yup, he looks just like any other 4 year old boy, unless of course you notice his leg length discrepancy. Speaking of his leg, he has recently been telling Wes that his leg gets tired (the short one). We have an appointment with his orthopedist on October 29. I hate this, I don't want to do it. Yes, I know I have to do it. Yes, I know that even though the leg surgeries are going to be awful and difficult, we will get through this too. Wes thinks it may be time for a lift in his shoe since he has grown. I am terrified that she will want to do the surgery now or soon. I really can't think about it or I could actually drive myself crazy.
Now for the good news. We had Owen's annual urology appointment on September 13. I dread it every year. Any mother whose child has had a serious or life-threatening illness knows the feeling of waiting for the other shoe to drop. Maybe the reflux is back. Maybe his kidneys won't look the way they should on the ultrasound. To add to the normal worry, Dr. Gazak is now retired and this was our first time seeing the new urologist. Frankly, I was very upset. I wanted Dr. Gazak. I have put so much trust into him. He literally became like a member or our family. Well, that wasn't an option so I did what was best for Owen. I sucked it up and took him to see the new doctor. He's good. He's nice. I felt like he talked down to me a bit, but he doesn't know how knowledgeable I became about Owen's bladder defect. And maybe I was looking for a flaw because I felt like I was cheating on Dr. Gazak. Most importantly, the visit couldn't have gone better. His labs looked great, all of the levels in his blood were on the low end of normal. I already knew that going in because I know what all the numbers are supposed to be. This means he STILL has normal kidney function. No way should that be the case, but it is and I am thankful beyond words. Even better, his ultrasound looked great. The other shoe did not drop. A huge weight has been lifted off of our shoulders, and he doesn't have to go back until next year. Thank God!

A very Happy Easter

I love Easter. I love it for so many reasons. I have enjoyed the holiday even more since becoming a mom. I love sharing the meaning of Easter with my boys. I love sharing some of the traditions from my childhood and creating new ones with my own family. I love attending church on Easter morning. The service at our current church is my favorite Easter service yet. Oh, and lets not forget the chocolate bunnies. This year my mother-in-law got us chocolate bunnies with peanut butter inside. That didn't even last until Easter morning. Yum!

We had such a nice day yesterday. The boys woke up at 7 (late for them in case you haven't heard me talk about my children getting up at the crack of dawn) and we did our scavenger hunt, which is a tradition that started when I was growing up. They get a clue that leads them to a gift.

Carter got a new booster seat. He needed it anyway, so we used it as a gift. He can't get enough of anything that makes him feel like a big kid, so he loved it. Owen's "I'm a big boy present" was a quilt for his new full size bed. All Carter really wanted was a basketball, and that is what the next clue led him to. Owen found a cuddly orange teddy bear waiting for him. Stuffed animals are his most recent love. He doesn't have just one special "friend" like a lot of kids, but a ton that he picks and chooses from. It actually makes it easier as far as not losing the one thing he won't sleep with that and all of that fun stuff. He was thrilled about his new aminal (not a typo, that is what he calls them. At last it was time for them to find the baskets that the Easter bunny had left for them. Carter was so cute trying to help Owen throughout the hunt. It was so cute to watch, but a little bitter sweet this year because neither of them really need our help anymore. It used to be, "Mom I don't know what that clue means" and now it is "We can find it ourselves."

Next was the Easter egg hunt in the backyard. This year to cut down on the ridiculous amount of candy associated with Easter, I put coins in about half of the eggs. Both boys thought that was just awesome. Carter especially is trying to earn what he refers to as an allowance. Then of course Owen wants to be just like his big brother. It is not an allowance per say. If the boys are gifted money from a relative that goes into the bank. In addition, we have begun doling out quarters for particularly good behavior or being extra helper. They can also help out with or do extra chores around the house to earn quarters. It has really helped them, Carter especially, to learn the value of money. It has also been a good teaching tool for Carter in the math department. Owen is still a bit young to fully grasp the concept, but he does understand it to some degree. Just before we started doing this Owen and I were at the pharmacy picking up prescriptions and he wanted a toy car. Besides the fact that he has half a million cars, I wasn't buying him a car that day for no reason. I told him that we came to pick up medicine and that it is expensive and unrealistic for him to expect me to buy him a car every time we go to Rite Aid. (I know I tried to take it down a notch and explain it on a 3 year old level, but you get the idea.) As I handed the cashier my debit card to pay for the prescription, Owen said, "Mama, there is money on that card. You CAN buy me a car." Oy. He doesn't get it. Of course he is only 3 1/2, but I think the early he starts to learn he won't always get what he wants, the better.

I digress. We got to church just with moments to spare. Wes and the boys went in and found my in-laws and my sister and her husband, who were saving us seats. I stayed out in the hallway with our Director of Children's Ministry to help her organize the children, who would be processing into the church with our flowered cross and Alleluia sign. There is a huge cross at church that is used on Easter morning. As people from the congregation enter the narthex they are invited to add flowers to the cross as a symbol of resurrection. Several weeks ago in Sunday school, the children made tissue paper butterflies and a sign that said Alleluia with all of their hand prints on it. The kids were so cute and everyone loved it. After we got the children back to their respective parents, I went to join my family for the service. It was just lovely. As is the tradition at our church, there is an Easter egg hunt following the 10:30 service for children under 8. It is actually more like a free-for-all. The eggs are not exactly hidden as much as they are just sitting on the front lawn of the church. The younger kids get a head start before the older kids are released to collect eggs. It is so cute watching the mad dash.

Next on the agenda was a trip to my parents house on our way home so that the boys could do a scavenger hunt and backyard egg hunt there. Wes and the boys stayed and ate lunch while I headed home a bit early to rest and put ice on my back after what had been a long morning. After the boys took their naps, we headed over to Wes' parents' house. They were hosting Easter dinner. First the boys had another Easter egg hunt. For those of you keeping track, that is four in one day. That is a lot of eggs, but they did not tire of hunting. My mother-in-law served glazed ham, fresh green beans, roasted sweet potato squares, deviled eggs and rolls. It was delicious. We also got to eat in the dining room in their new house for the first time.

It makes me so happy to have my parents and my in-laws living so close, and my sister and brother-in-law living about 25 minutes away. We don't have to chose which family to spend time with. After 15 years our parents are great friends and everyone really enjoys spending time together, especially on holidays.

I haven't forgotten the most important part of Easter, just chose to talk about it last. The true meaning of Easter does not involve bunnies, eggs or candy. It is the day that we as Christians celebrate the resurrection of Jesus. It is an important day to remember that Jesus died for us on the cross, and was resurrected on the third day. We now celebrate this day as Easter.

While I am writing about my faith, I have a great story to share about something that Owen said today. He told my mom, "Grandma, Jesus died for us." My mom confirmed this, and then Owen said "If you have a problem, you can talk to Jesus in your head and he will help you." At three and a half years old, the child continues to amaze me with the things that he says about Jesus, God, heaven, angels etc. I look forward to much more input from Owen as well as many more happy Easters.

Time Flies

You know the saying... "Time flies when you are having fun." While this is certainly true, I have found that being the parent of two small boys, time flies in general. The boys are growing up so fast. I find myself making a conscious effort to slow down and enjoy each moment. I've decided that part of keeping these early memories alive involves doing a better job of keeping up with this blog.

Last week marked an anniversary for Owen that I will never forget. Wednesday the 18th marked two years since Owen's VCUR was resolved. He was scheduled for the first surgery that morning, during which Dr. G was to be removing the stent that had been placed in his ureter during his bladder reconstruction that was done in October. He had surgery on November 20 to remove both stents, at which time we were told that the reconstruction surgery did not repair the reflux as it was intended to do. He had to put one of the stents back in until he had a plan in place as to how the problem would be dealt with in the end. During a post-op appointment after the November surgery, Dr. G told us to get through the holidays and they the second stent would have to be removed. It was a terrible time for us, waiting and not knowing what to expect long-term.

On January 18, 2010 we headed to the hospital feeling very sad, worried, overwhelmed and defeated. Our hopes for a cure for Owen's VCUR had been dashed. We were in contact with two other pediatric urologist who were the best in the country. It was time figure out the best thing to do to allow him to reflux and at the same time allow his body to accommodate the amount of urine that was going to have to be held in his urinary tract. Dr. G came out into the waiting room instead of meeting us in a conference room as was customary. He was holding the x-ray from Owen's post-op VCUG and exclaimed with extreme excitement and disbelief, "It is fixed!" What?! What is fixed? The VCUR can't be fixed, that was not even mentioned as possibility. It was true, after a 1cc shot of Deflux, he was no longer refluxing! It was the best news we had ever received and the most difficult case of bladder reflux that Dr. G had ever been able to fix. When I asked how it had happened, Dr. G said there was really no medical explanation. It was partially a case of his body having more time to heal, but mostly we had received a miracle.

Of all of the dates etched in my memory in relation to Owen's health journey and his 8 surgeries, this is the date that I will forever remember as the day that our prayers were answered.

A Very Personal Challenge

If you are a regular visitor to the B-Hive, you know that we have been through many challenges as a family in the past 3 years. I have said many times that one of the most important things throughout this journey has been our church family. My faith has been tested. I have prayed to God, thanked Him for the huge blessings in my life, and at times wondered why He has tested us with some of the challenges that He has thrown our way. Sometimes my prayers have sounded a lot like begging, pleading for God's help. No matter how you look at it, my faith has been tested over the past three years. I can also say that sitting here today, my faith is stronger than it has ever been. There is no doubt in my mind that God has not only carried Owen on his journey toward healing, but that he has been right there with me as I have wondered how in the world I would make it through the next days, weeks, months.

Some time ago, I'm not sure exactly how long, I saw a posting on a great friend's Facebook page (I love you Angela!) about reading the Bible in 90 days. At first I scrolled past the link not thinking too much of it. I did kind of a double take and scrolled back to the link. My thought was, "90 days? That is not possible. How could anyone read the entire Bible in such a short period of time?" After thinking about it for a few moments I thought, I'd love to do this. I'd love to do this with Angela who is a strong woman of faith whom I really love and respect. Then I started thinking about the challenge and what it would mean to me to complete it.

Today marks the beginning of Week 3 of Bible in 90 Days (B90Days). As of today I have read through the books of Genesis, Exodus, Leviticus, Numbers, and Deuteronomy. Tomorrow starts the book of Joshua. Some parts have been particular difficult, slow dense reading or a lot or repetition. Other parts have been so enlightening. All in all I am loving it and am so proud that I am sticking with the challenge and on most days not even finding it particularly difficult. Support and accountability are huge factors as well. There is a huge group of women, other moms, taking this challenge. I was assigned to a group and we check in with a mentor each Monday. I also have Angela reading right along with me, and also a good friend from high school.

I am looking forward to continuing on this journey, learning more about my faith and myself and reading the WHOLE Bible!

A life saved

Two years ago today Owen had his first of six urology surgeries to save his kidneys and ultimately his life. His first surgery, a vesicostomy, alleviated the pressure that his bladder reflux was inflicting on his kidneys. Unfortunately it was not a permanent fix, and he went on to have surgery about every two months to bring him closer to where he is now. As of his last urology appointment 6 months ago, his reflux was resolved. His kidney function has remained normal, which is wonderful. Tomorrow we go for another 6 month follow-up appointment with Dr. Gazak, Owen's life saver. We hope and pray that things will look good as they did at his last appointment. Of course these appointments are always scary and cause quite a bit of anxiety. The waiting and wondering is so taxing.

The Other Man- A True Lifesaver

I love my husband and two boys more than anything. However, for the past 18 months there has been another man in my life. Not to worry, it is not a secret. I know I have expressed my love for him at least a hundred times. We all love him. I am speaking of Owen's urologist, Dr. Gazak, of course.

Last Wednesday I took Owen to the hospital for bloodwork that was ordered for Dr. Gazak in preparation for Owen's check-up this past Friday. It was the most calm I have ever seen Owen at the lab. Actually, the most comfortable I have seen him in any medical setting in quite a while. He has become understandable worried, even frightened, of medical professionals. If you are wearing scrubs or wielding a stethoscope does not want you anywhere near him. I was shocked and very proud of him.

Friday was Owen's first check-up with Dr. Gazak since the surgery in January that resolved his bladder reflux. He has been doing well, acting fine and perfectly healthy. Still, I could not help but worry about the results of his tests. It goes back to what I mentioned in a previous post about how difficult it is to wrap one's mind around such a huge change, even a wonderful one such as the huge improvement in Owen's health. Like I said, there isn't just a flip to switch to turn off the emotions that come with caring for and worrying about your child with a major illness, one that we thought would be a lifetime disability.

Dr. Gazak was right on schedule on Friday, which is fairly unusually given the amount of time he spends in surgery and the fact that he is a very gifted surgeon with quite a lot of patients. After a very short wait Nurse Judy came to take us back for and ultrasound. Again, Owen did much better during the ultrasound than he ever has. He usually cries and moves around like crazy, making it very difficult for Judy to get good pictures and measurements of his kidneys. This time he lay very still, taking a peel and stick Bob the Builder off of the wall next to him and putting it back over and over. He even talked to Judy, smiled at her and was very pleasant. She was thrilled that she didn't make him cry for once. As she was doing the ultrasound, I could tell his kidneys looked good. We talked about it as she looked and measured. There was a tiny bit of hydronephrosis in his right kidney (the side that took much longer to heal and led Dr. Gazak to believe that the ureter re implant had failed when he went to take the stents out back in November). It was a very small amount. She had to look for it, whereas before there was a ton and it was completely obvious as soon as she scanned his kidney. She was unable to find any hydro on the left side.

After the ultrasound she took us down the hall to an exam room. Dr. Gazak was standing right in the hallway getting ready to review the ultrasound films. He greeted Wes, Owen and me and asked how we were doing. He asked about my kidney issues. I said, "that is another story." At that point I was just beside myself waiting to hear his take on things. I said, "you tell us". We went into the exam room where he thoroughly explained the pictures of Owen's kidneys to us. I love that he is still so thorough in his explanations despite the fact that he knows how much I know about Owen's urinary tract. He knows I want to know it all. He said that the hydro on the right side was basically nothing, not to worry. He went on to tell us about Owen's blood results. His creatinine level was great, his electrolytes were great. The only level that was slightly lower than normal was his CO2 level. This is a level used to measure kidney function, however it is not as crucial as creatinine levels. The CO2 level can also be slightly low because diet. For instance, Owen is teething something awful (and drooling like a St. Bernard I might add) so he hasn't been eating as well. Again, Dr. Gazak said nothing to worry about. The only other thing of note is that his right kidney is about 1.75 mm smaller than the left one. He said this was because it had been the victim of more "insult" than the left. When that happens, especially with severity of reflux that Owen had, it just takes a little while for the kidney to catch up. Also, two kidneys are rarely the same time.

He closed by saying that he looked great, his kidneys look normal. Normal. We kept saying normal back and forth. I don't think any of us really believe it. It still hasn't sunk in. Owen doesn't have to have blood work or another renal pelvic ultrasound for another 6 months. I truly never thought this would happen. It is just so wonderful, there aren't words to describe how blessed I feel. I look at Owen in awe of all that he is been through and as hard as he has fought to get here. We always knew he would be ok whatever his differences were. Even before when it seemed impossible that the reflux would ever be resolved, there was a plan. He would have been normal, Owen's very own normal. But now he is just normal, as in his urinary tract is normal. Amazing. Wonderful. Thrilling. Miraculous.

For the umpteenth time, thank you Dr. Gazak!

A New Chapter

In early October 2008 our lives were turned upside-down after Owen became extremely ill. We took him to a regional hospital, found out he was nearing the point of seizure and cardiac arrest, and were critical cared transported to a Children's Hospital downtown. You know the story, we spent 2 weeks there, much of it in the PICU as the doctors attempted to find a diagnosis. Owen was eventually diagnosed with Grade 5 Bladder Reflux and underwent surgery, a vesicostomy. That was the first of 7 surgeries that Owen has undergone. With the exeption of his cleft lip repair, all were urological surgeries meant to relieve the pressure being put on his kidneys. It has been a long road. My Little Man has fought like a tiger through all of it.

Surgery # 7 took place on January 18. We feared that the surgery would be postponed because of a repiratory infection that Owen developed that turned out to be the Roseolla virus. Luckily we were able to go ahead with the surgery. Dr. Gazak performed a cystoscopy, during which he removed the stent from the right side of Owen's urinary tract. He then did a cystogram, an x-ray to discern the level of reflux and the condition of the urinary tract. The cystogram was clear. The only thing he found was that the valve that he had created on the right side of Owen's bladder during the ureter reimplantation/bladder reconstruction surgery on October 19 was a bit weak. He was able to inject a shot of Deflux (a reflux medication) which is a binding agent that would strengthen the valve. The final result of the surgery- Owen's bladder is no longer refluxing.

Thus, the new chapter of our lives begins. We spent the first 16 monts of Owen's life worried and scared. He spent that time hurting, fighting and enduring surgery after surgery. We hurt and fought right along with our sweet Little Man. After an extremely negative x-ray after surgery in November, things didn't look so good for Owen. We were told that he would be ok, but would live with relux and the serious disablitiy of having a hole in his bladder to empty his urine for the rest of his life. It was devistating. That news has no place in this new chapter. After 16 months of awful illness, many hospital stays, countless visits to specialists and more worry and angst than I can express, Owen is out of the woods. Owen is healthy. Owen passes urine just like any other little boy. He made it. We made it.

Today I finally felt able to write this post. As wonderful as this news is, as excited as we are to have begun this new chapter as a family, as blessed as we are to have Owen's condition to have improved the way it has, it is also difficult to adjust. He was sick for so long, and all of the sudden it is as though a switch has been flipped. I love the switch. I am glad it was flipped. It is just going to take me a while to get used to this new lighting.

As always, I want to thank all of our family and friends who have kept us and especially Owen in their thoughts and prayers. It has meant the world to us, and we believe has been a contributing factor in where we are today. We feel very loved, and again we thank you.

One year ago today.

I am one of those people who remembers dates, phone numbers, addresses and to be honest just a ton of other information. Don't get me wrong, I am not good at math. This skill never served me in a history class when asked to recall important things that happened and on what date. It is more like if it was important to me or someone that I love, I'll remember it. No photographic memory here, I'm just a weirdo.

That being said, one year ago today our lives changed forever. Owen was born seemingly healthy with a very minor cleft lip on August 27, 2008. He and I were discharged from the hospital 2 days after his birth, just like normal. We brought home a healthy baby boy, or so it seemed. As time passed he showed symptoms that mimicked those of GERD. I thought he looked jaundiced. We were given a prescription to reduce the acid in his stomach and I was told that he wasn't jaundiced, "that is just the way newborns look." It was 37 days later after his birth that we realized something was terribly wrong. Most of you know the story. For that reason and the fact that I don't have the time or emotional energy to tell the whole story. The short version is that the illness that Owen had all along (Grade 5 Bladder Reflux) gave him a terrible kidney infection. He crashed, went septic, had to be rushed first to the ER and then downtown to the PICU at Hemby Children's Hospital, and we came very close to losing him. This day last year was one of the very worst days of my life. This year I have a healtly boy with health issues and physical disabilities. This year, today I have a little boy who is happy. A boy who still has a long road ahead of him, but he is here and we are blessed. I truly do feel blessed today. I thank God for Owen, and my family in general. On the other hand I feel very emotional and have lots of anxiety to go along with the memories of this day one year ago.

Owen, thank you for fighting. Continue to fight, continue to give me signs, and know that I along with your Daddy and big brother will be always be here to fight along with you. We love you so very much!