I Know that My Redeemer Lives

This month I've had the chance to teach sharing time in primary (oh, right by the way I got a new calling!) and each lesson has revolved around Jesus Christ being our Savior. I'm so grateful that I have had the chance to teach and prepare, it has made it all so fresh in my mind today. We've talked about how Christ is our example. That because of Christ's Atonement, we can repent and live with God again. That because Jesus Christ was resurrected, we will be too, and that Jesus Christ is our Savior. So in preparing these lessons I have obviously been thinking a lot about what Christ has done for these children, for me, and for my family. But it wasn't until today during Sacrament meeting (the first hour of our meeting block where we meet as a congregation and partake of the Sacrament) when a friend of mine was giving her talk (sermon) that the full import of what Christ, my Savior, has and will do for my family.
I know that Jesus Christ was resurrected, and that he lives. This means that he has broken the bonds of death, and that I will live again. You will live again. And not just in any body though, Christ made it so we will live again and that our bodies will be perfect. And then it hit me, Ezra my sweet child, will have a perfect body. Ezra will hear again, he will walk, he will talk to me, he will hold my hand, and he will be able to talk and play with Hyrum in the ways I always envisioned them doing. Oh, the scope that the Atonement covers! The sadness that comes from limitations that my kids may have, the loss of a loved one, or the pain of sin are only temporary, because of the Atonement.
I know Christ is our Savior. I know that he preformed the Atonement on our behalf so that we too can live again and be made clean. What a joyful reminder this has been for me. The importance of this sacred truth has never hit me so hard. Never before have I felt this so deeply to be true, "What joy this sentence gives, I know that my Redeemer Lives!"

Below is a link to a video that I really enjoyed. You may have to scroll down just a little bit to see it though.

His Sacred Name--An Easter Declaration

Dear Hyrum,

     Well today you are two years old, and I really need to find the slow down button. You have gotten so big! Gone are the days when you fall asleep in my arms. Instead you run into them. Gone are the times when I have to guess what you want. Instead you sign or tell me. Gone are the days when listen contently as we read you a book. Instead you excitedly point to everything you know a word for-- your favorite being trucks!  While you have changed much about you has stayed the same. You still wake me up at 430 in the morning. You still have the sweetest laugh. You still are a thoughtful and caring little boy. And you are still a major flirt!

     Much has changed for you this last year, and you have taken it all in great stride. The biggest change for you was that you became a big brother for the first time. Man, you impressed everyone with how great a big brother you are. When Ezra was in the hospital, one time a nurse was fiddling with Ezra's wires and he started to cry and you went over to the nurse and told her "No, no, no!" You didn't want anyone making your little brother upset. You are always giving him kisses, or asking to give him kisses. You never leave him out. You always play with Ezra when its his tummy time too. You lay next to him and talk to him or point to his mouth. Sometimes you try to sit on Ezra and while he thinks its funny, I don't normally let you sit on him for long (sorry!). You are mommy's big helper. Sometimes when Ezra's re-flux is acting up you get to Ezra before me. You run with those little legs of yours and sit Ezra up and wipe the mess up with the first rag you can find. The best part is I never even taught you that you picked that up all on your own. 

     We have also started teaching you sign language and you are doing AMAZING with it. You know so many words and learning more and more every day. We only have to show a sign to you a couple of times and you have it down. Your favorite words to sign right now are lion, truck/car/bus, and maybe thank you. 

      You love books! When I say you love books, I mean you really love them. First thing in the morning you ask for is a book. Before food, drink, or anything else, you ask for your books. At night we have to read you at least five books, three times and even then sometimes you still go to bed crying for more books. I will often find you sitting next to the bookcase in the living room with surrounded by books, with one in your lap smiling happily as you point to the cars and different animals that you recognize. 

     My dear sweet Hyrum, I can't believe how much you have changed, and I know its only going to continue. I do hope the if all else changes that one thing remains the same, that you always know that your Dad and I love you very much. That we think the world of you and we believe that you are capable of doing wonderful and amazing things. 

I love you my sweet Dragon and always will!

Love Forever,

Mom

Home for Three Months

Three months ago today we brought Ezra home for the first time. So much has changed since that moment in time and I can honestly say that I'm the happiest I have ever been in my whole life. Don't get me wrong, it was a hard transition from one to two kids but there have been so many sweet tender mercies that it seems to have balanced things out.

In the last 3 months Hyrum has adjusted so well to being a big brother. He loves giving Ezra kisses, sometimes he's a little to enthusiastic and we have to pry him off of Ezra so he can breath. Hyrum's vocabulary has doubled and he has started to learn so many signs. Sign language has been very helpful in communicating with Hyrum. Some how he just understands better when I speak and sign to him. 

Hyrum loves to read. Currently, his favorite book is There's a Rumble in the Jungle, he loves looking at the pictures and telling me what the animals are both vocally and in sign. He loves making animal noises and that book has been perfect for it (Thank you, Emily!). 

Hyrum has also developed a love for toy cars. He will fly them through the air or drive them across the living room. More recently he has started transferring all the cars from his over sized dump truck to a bucket to another bucket and back again. He could do this all day if I let him, but nap time is a little to important for my sanity so he can't.

Ezra has continued to amaze us. Today he has hit a milestone that I thought would take him much longer to accomplish. He is sitting up all on his own! It may only be for 30-45 seconds but it is still wonderful to behold.

With all these blessings I can't wait to see what else my little family has in store for me!

 Ezra smiling

 Hyrum loves signing the word for cookie!

 He is just so full of excitement. 

Looking all snazzy after church.

How Hyrum plays with cars

Ezra's Ears

After 3 failed hearing test we have found that Ezra has some amount of gearing loss. The exact amount of hearing loss we aren't sure of but we know the is a profound amount that is gone. We have been told that he may be completely deaf or that hearing aids may help. We do know that his hearing loss could be because of his brain damage from the CMV or it could be that the CMV has affected his hearing by hurting his ears directly. We haven't been able to determine which is the definitive cause though.
The good news is that today we are going to Boy's Town National Hospital and we are picking up Ezra's hearing aids! I'm so excited. I really hope that this will give him some environmental cues at the very least. Although it would be great if he could hear more than that, but I don't want to get my hopes up to high. Ezra has already accomplished so much that I will be grateful for any feed back with the hearing aids that we may get.
I will admit that I'm  very nervous at the same time because if the hearing aids don't work the next step will be to see if Ezra is a candidate for a Cochlear implant, which is just a little scary to think about.
Well wish us luck!! We will let you know how Ezra's new ears work out for him.

Ezra's Story: Part lll

    The night that we were given the news about Ezra condition, Jay lovingly took it upon himself to let key members of our family know what was going on and then they were tasked with letting the rest of our family know any new developments that took place. My Father, after hearing the news, suggested that we do a family fast for Ezra. We would go with out food for 24 hours and pray to our Heavenly Father the he would heal Ezra or that if it wasn't His will to heal Ezra that we would know what we should do to help our son. Jay and I talked about this for a long time. We both knew that God is capable of all things, that if we have a righteous desire and go to the Lord with a sincere heart and in prayer that he could heal our son completely or to any degree that he wanted to. Jay and I also felt like if there was anything that we truly wanted it would be that we didn't have to make the choice of when to pull Ezra's breathing tube out. We didn't want to make that choice so we added that to our personal prayers as well. We also both felt inadequate going to the Lord with these lofty requests but after some discussion we would put our faith in the Lord and decided that no matter the out come we would know that it was his plan, it would be for our good, and that we would put our trust in him no matter what.
   My parents also told us that Sunday after church they would start the 20 hour drive to come see us. They would get into Omaha Monday evening (Oct 1) and would stay for about a week. The doctors who were concerned that we didn't have enough support here in Omaha were glad to hear this news as well. The doctors reassured us that we didn't need to make any decisions until after we had family come.
    The fact of the matter was that we had SO much help and support from our friends and church members here in Omaha (we also had a lot of support through prayers from outside of Omaha too). We had multiple friends offer to help watch Hyrum over night so that we could stay at the hospital over night, we had no less the 5 people offering to watch Hyrum for any length of time we needed, we had dinners brought to us the first 3 days and then every other day for two weeks. We are and were so blessed with great friends and family who took care of us. Sorry for the tangent but I felt it was important to note some of the many blessings we received.

 Anyway, Oct 1st my parents arrived and let me tell you that was a relief. There is something so comforting about a hug from a parent. They got in a little later then expected and so it was decided that, while Jay took Mom and Dad to visit Ezra, Hyrum and I would get some much needed sleep. I didn't really like this idea but agreed to it after my parents promised they wouldn't hold Ezra until I could be there and Jay had to take pictures of them first meeting him. 

 As you can see my mother cheated... she didn't really hold him but she kinda did.

    But at least they took pictures for me, right? 

    After they came home we all went to sleep and at 11:58 pm we got a phone call from the hospital. It woke me up right a way and I was terrified. The nurse on the phone must have had some experience with late night phone calls because the first words out of her mouth were "Ezra's okay." She explained that normally they don't call this late unless something is wrong but since Jay had just left the hospital they wanted us to know that Ezra had pulled out his breathing tube and he was doing wonderfully on a less invasive form of breathing support. We were beyond elated, or at least we would have been had we not been so drained. In the morning we celebrated and felt the Heavenly Father had already begun to answer our prayers and fasting.
    We went into the hospital the next day and it was there was a completely different feeling in the room. Instead of feeling like we would be saying good bye at any moment, there was hope. We were cautiously optimistic but there was hope. We would have another week and a half with Ezra on the CPAP and another week and a couple of days of trying to keep his temperature up and ironing out some kinks with his feedings and then we would bring him home.

    After 3 weeks and 5 days Ezra came home from the hospital with us! There are more trials to come and Ezra has many hurtles leap but we know that we are not alone. Ezra is our little miracle. I couldn't have asked for better friends, or family, or husband, or sons to help me get through the trials that are a head. Thank you so much for all that you have done for as. We truly have felt your prayers lift us up and comfort us.

Ezra's Story: Part II

     At 10:25 pm on Wednesday, 26 September 2012, Ezra was born. I got to hold him and then he was whisked away to the NICU. A room that was so full of people emptied to just me, while I waited to hear how my little boy was doing (Jay went with Ezra). After about a half hour Jay sent me Ezra's stats: 5 lbs 6oz, 18.5 inches long. He told me Ezra had a chest x-ray done and that it came back normal. After another 45 minutes I was helped into a wheel chair so that I could see Ezra before heading up to my recovery room. I couldn't reach him in his bed to touch him because my left leg was still pretty much useless, so we only spent a couple of minutes with him before we left to get some rest.
     The next day we tried a couple of times to go down and see Ezra. The first time we didn't have much luck as they were preparing him for an MRI to finalize Ezra's diagnosis. The second time Jay went down by himself and I got to spend time with Hyrum, but again Jay wasn't able to hold him, in fact he was told he couldn't even touch him. Now don't get up in arms about how horrible the nurse was for not allowing Jay to touch him, they had good reason. After Ezra had returned from his MRI the nurses started noticing that Ezra was having seizure-like movements. He was so sensitive that if you even touched his breathing tube that it would set him off on another one, so putting your hand on him would have been way too much stimulation. So Jay came back up, very disappointed as you can imagine, and he explained to me about the seizures. Shortly after he arrived Ezra's doctor came up to my room to deliver the results of Ezra's MRI.
     The results to the MRI were devastating. Dr. Kaftan explained to us there was no cyst and it wasn't Dandy-Walker causing Ezra's difficulties with breathing, and that was about the only good news we got from him. This meant no confirmed diagnosis, but because of the MRI we did have a clearer picture of what was going on with Ezra. He told us that  Ezra had a small head and inside that already small head was an even smaller brain, and that brain had extreme calcification throughout all of it. For those that don't know, calcification is what brain tissue looks like when it has died. In addition to that he was seizing still even though he was on two anti-seizure medications, and he also was not breathing on his own even though his lungs were fully capable of doing so. This lead the Dr. Kaftan to believe that Ezra's chance for life was "worrisome", if he did survive he wouldn't have much of a life. The expectation would be that he most likely wouldn't be able to walk, crawl or even roll over on his own. They had an idea of a couple of viruses that could have caused the damage and they were running a urine test to find out if any of them were in his system.
     Friday, September 28th, we discovered that the culprit to Ezra's ailment was a virus called Cytomegalovirus (CMV). We were also told that CMV could continue to add to Ezra's problems. It could cause our little boy to become blind and/or deaf. CMV was confirmed by two infectious disease specialist, and a neurologist confirmed Ezra's prognosis for development and survival. It was the hardest and longest day I have ever experienced in my whole life!
     Friday, September 28th was also the glorious day that Jay got to hold Ezra for the first time. I guess that proves that not everyday is completely bad. Tender mercies do happen we just have to recognize them.

  

 Ezra's face had to be covered to reduce the amount of stimulation he got so that he wouldn't seize.

 Holding Ezra for the first time.

Ezra's Story: Part I

     I've been debating about starting up blogging again for some time now, and it really has been a struggle for me to want to but I have decided that I need to get over the excuses and just do it. I ultimately decided that I wanted to start blogging again because our lives are completely different and I find myself struggling to get information to those that we love and who love us, and it doesn't sit well with me. I also am finding that I need an outlet to get my thoughts down. So hey, why not kill two birds with one stone, right?
Before I go any further in this post, I would like everyone to know how grateful Jay and I are for all that you have done for us. I know that it has been because of your support, whether through prayers, meals, babysitting, or whatever it may be, it has sustained us and carried us through the last couple of months. Most of you don't really know the whole story about what has transpired with our little Ezra so I think that will be where I begin.

     For the story to make sense (at least so that I can write it) I'm going to have to go back to before Ezra was born. On June 4th of this year, Jay and I went in for our 20 week ultrasound where we got the good news that we were having another little boy (Yay!). Along with that exciting news we also were told that Ezra had what looked like a cyst on the back portion of his brain. For those who don't know a cyst is a fluid filled sac and it can occur anywhere in the body without anything really causing it, but sometimes it can hint that there is a problem going on. Anyway, my OB, while not too concerned, scheduled us an appointment the next morning with a specialist to get a closer look with a better ultrasound. Needless to say I did not sleep well that night. I went to the specialist hoping to hear that it was nothing and that I could go on my merry way, but sadly that isn't how it played out. The doctor came in and told me the exact opposite: there were other markers on our little boy that showed that he may be having complications. The doctor ordered an amniocentesis to rule out anything genetic and scheduled another ultrasound for when Ezra was bigger to continue to monitor the baby's development. Thankfully the amnio came back normal. Fast forward a couple of negative tests, a couple of inconclusive ultrasounds, a one MRI later and we finally figured out what we thought was going on with our little boy. For the last portion of my pregnancy we believed Ezra had Dandy-Walker Syndrome, and an IUGR. IUGR is where for some reason or another the baby isn't growing like it should while in the womb. Dandy-Walker we were told would cause Ezra to be slower to develop, but that with physical, occupational, and speech therapy he would be able to catch up to what other kids could do by the time he was in Kindergarten. Both of these problems were what we felt to be manageable as long as we were monitored closely.
     So we had what we thought were Ezra's diagnosis's and we continued happily, albeit cautiously, with the rest of my pregnancy. At 33 and 35 weeks we saw miracles at our ultrasounds where Ezra grew a pound each time! But at 37 weeks Ezra stopped growing. He dropped from the 11th percentile in weight all the way to the 5th, because of that the doctors feared that if he stayed in any longer that he wouldn't get the nutrition that he needed to survive so I was induced the next day.
     September 26th, we dropped Hyrum off at a friend's house and headed to the hospital so that we could meet our little boy. The nursing staff and doctors were amazing! Several weeks before they had delivered another baby with Dandy-Walker that was full term. They said that at delivery the baby initially had trouble breathing and had to spend sometime in the NICU, because we were delivering earlier and with a smaller baby they asked us if we would like the NICU staff to be there at Ezra's birth, we of course said yes. After 8.5 hours of labor and 3 pushes our little Ezra was born and I immediately felt like something was wrong. Ezra wasn't crying, he wasn't moving, and he looked limp, I was terrified. My doctor, seeing my look of concern, told me that he would be okay and passed him off to the NICU staff who cleaned him up and worked on making sure he was in fact okay. He cried briefly, only a split second, but I was relieved. After several minutes, a nurse named Sarah said he was having trouble breathing on his own and that they needed to intubate him. Once they were helping him to breath a little bit better they swaddled him up and put him in my arms. We took a bunch of pictures and then they transported him down the hall to the NICU were he would end up spending the next 3 weeks and 5 days, before coming home with us.

The blue hand was one of the nurses giving Ezra breaths.

Holding Ezra.