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.