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.

   

The End is in Sight!!!

Our due date has come and gone with out the arrival of our little guy, but the end is in sight because I have my induction date! I had a feeling that I wouldn't have the baby early or on time but that he would be late despite things moving along well (according to my doctor). At my last appointment I was a 4 and my doctor talked about inducing me early next week depending on how full the hospital was. I am all for the help to get things started and was pleasantly surprised when I got a phone call saying that I was scheduled to go in on Sunday at 6 pm!!! That my friends is only 4 days past my due date and I couldn't be happier. I'm relieved that I don't have to wait another full week for my baby, and it makes things a little bit easier to figure out with Jay's travel plans. I'm also happy that my doctor doesn't like using pitocin or breaking your water as a way to start labor. I have heard horror stories of how labor is a bigillion times harder with pitocin and I'm not a huge fan of having that count down to a c-section if the baby hasn't arrived in 24 hours. I already have to be on antibiotics and it makes me feel better that my water will be given a chance to break on its own hopefully lessening the chance of infection and that sort of thing. I'm also way excited because I am already dilated to a 4 and according to my doctor (and sister) getting to that point takes FOREVER when you have to be induced, and so I get to bypass that long process!

Anyhow, I'm excited for our little one to be coming soon! I'm so glad to know that if he doesn't start coming on his own today, that the process with be started on Sunday and at the latest we will have our handsome son on Monday!

This is also a really good thing because it seems as if every time I get online another one of my friends are having their baby, and now I'm not so jealous!

Thank you to everyone who has called or texted asking how things are going and if the baby has come yet. We appreciate the love and support you give us, and look forward to finally being able to announce the debut of our new addition.

The Last prego belly picture!! Taken March 3 at 40 weeks!

Officially Full Term :)

YAY! Today I'm 37 weeks along, so technically our little guy can come any day now. Yesterday I had a doctors appointment where they checked everything out to see how I was doing and I'm already 1 cm dilated and 50% effaced. Which from what I have been told is pretty common, but it makes me happy to know that things are happening. Especially because I haven't felt any Braxton Hicks contractions yet, which doesn't necessarily mean anything but my irrational brain sometimes has me thinking it means that this baby is going to set up permanent residence in my body.

I haven't blogged to much about my experience so far with being prego but for the most part its been smooth sailing. I haven't been sick very much and really only threw up when something smelled bad or for the first couple of months had meat in it or smelled like meat. I've been very grateful for this because it has made my life so much easier. I think my worst symptom has been the mood swings, which at first threw me for a loop. At one point in time I was laughing and crying (and not knowing how I wanted to feel) at the same time because Jay accidentally made me drop my ice cream. It has made Jay's traveling a little bit harder because I miss him so much more and am so much more sensitive to things that I get more overwhelmed by things when he is gone. I will say that knowing that my moods aren't always as "real" as what they seem has helped me to reflect and take a moment to really think about what I'm feeling. I often find myself saying "Are you really this upset that you are bawling, or could it just be the hormones magnifying the problem and making it seem worse?" Really taking time to know what I'm feeling has been a fun experience, I have learned a lot about myself and how much I can really do for myself. Although, I will say this, Jay has been AMAZINGLY patient with me. He is there to sweetly hold me in his arms when I'm crying and calm me when I'm upset. He does so well with my mood swings, he is definitely a blessing, especially because I think these mood swings are A LOT harder on him then they have been on me.

Anyhow, I've finally gotten to the point where I can tell I'm nesting. The baby's room is so much more organized, and a whole heck of a lot cleaner. I've washed all of the baby clothes that we have been given so far (Thank you SO much by the way!) and am in the process of putting them away and organizing them. I haven't had my baby shower out here in San Diego but one is planned, and I'm so excited to celebrate our little one with all my friends out here.

I still have a huge list of things to do, which include:

• Finding a pediatrician (I know this needs to be done soon. Any tips?)
• Find or make mattress to fit into bassinet (Don't worry we have a pack'n play just in case this doesn't get done in time.)
• I still have a list of odds and ends that need to be purchased before baby gets here.
• I have material for a blanket for the little guy but have yet to decide what exactly to do with it. The material was a Christmas present.
• Still have to figure out if we want to use Cloth or disposable diapers. I know my preference but at the same time, I'm not sure what to do. Tips would be welcome here too.
• And we need to finish our birthing class, which has been so much fun so far.

I'm so excited for our little one to join our family! I'm trying to enjoy the last couple of weeks I have of him being inside me though, because I know I'm going to miss feeling him squirm and kick around. I also am looking forward to a little bit more time of it being just Jay and I. I plan on taking full advantage of this time because I haven't really seen Jay very much the last couple of months. We already have a couple of dates planned and are gonna continue to try and do things that will be harder to do when the baby comes, like going to the movies and going out to dinner. Well we will keep you posted and we will let you know as soon as he comes! In the mean time here are some prego pictures. I have posted them on facebook but it will be nice to have them all in one place too.

*8weeks*

*11 weeks*

*17 weeks*

*21 weeks*

*25 weeks*

*32 weeks*

*35 weeks*

*35 weeks*

Hopefully I will be able to get one or two more pictures up before the big day! :)

Craziness, Or Maybe Just Going Crazy!

The last couple of weeks I have felt like I'm slowly losing all of the normal mental functions that I once had. Mind you I'm not perfect, I've locked my self out of my car before (maybe a couple of times actually), I've gotten impatient, I've gotten tired and cried over something silly, but I have seriously never felt this way before in my life. Pregnancy is making me crazy! I'm not sick, but oh how I would trade for it right now. Why you may ask, because last week I lock myself out of my car and don't realize it until after work, and yesterday, well thats were our story begins.

This past week I have been watching a little boy from my ward who is way cute, very well behaved and just an easy going kid. I have had absolutely no problems while watching him. I took him to preschool, a play date and preschool again, and the rest of the time we just played. Yesterday was a preschool day and so I took him to preschool, and then dropped off his parents car picked mine up so that I could go back home and then run some quick errands before going back for the parents car and picking him back up. Sounds like a pretty good plan right? Well, sadly it turned out to be a pretty traumatic 2 hours. I get home safely get the information I need to go get some free concert tickets and as I step close the door I realize that I don't have my keys. This wouldn't have been a problem if I wasn't in the habit of locking the door handle from the inside before I got out. Do you see the problem this would cause? I did, and quickly I checked my purse to see if my keys were in there, nope nothing but the keys to my friends car. I check my ALL my pockets, nothing! I look in my purse again find the keys to my friends car and put them in my EMPTY back pocket, and I check all my pockets again for my keys, and again nothing. After throughly confirming that I had locked myself out of my house I began to cry, correction I started BAWLING! I called Jay left a message with him (although there was not much he would have been able to do because he out of town for work), and then I called my sister Veronica who got the whole crying, unedited version of my freak out that I had spared Jay from. She patiently listened and said that she could help me look up a locksmith, and feeling some relief I crumpled to the ground, upon doing so I felt a lump in my back pocket, thinking it was my friends keys I stick my hand in my back pocket and pull out MY keys! Yes, Ladies and Gentlemen you heard me right, I pulled out my keys. Threw sobs I tell my sister that I found my keys, and she told me I needed to go inside, eat, get a drink, and sleep. I thanked her for her help and feeling confused and terrified I went inside my home.

This might be a little ridiculous but after I found my keys I didn't feel relieved or happy like I should have. I was even more upset and seriously confused! I know I checked my pockets and there was nothing there! I felt like I couldn't trust my memory or my senses and I felt extremely venerable. Thankfully, I have a wonderful husband, mom, and sister who listened to my horrible story, and as I re-hear what happened I know I'm not crazy. Instead I realize how blessed I really am. I know those keys were not in my possession when I locked that door, or when I was talking to my sister. BUT I have a Heavenly Father who loves me and is watching over me (apparently very carefully), and he helped me so that I could get back into my house. I know that this may sound a little crazy in and of itself, but I know that my Heavenly Father can do anything (for heaven sake he parted the Red Sea) and he did help me yesterday.

Even knowing that though I still am very paranoid. I check my pockets and purse three times to make sure I have my keys before leaving the house or even my car, and I still freak out that I don't have my keys even when I feel my keys in my pocket. I'm sure hoping that this pregnancy thing feels like it goes by quickly and that some of my sanity is restored when our little guy gets here, but I'm not gonna bank on that. I have learned my lesson and have begun trying to find a good hiding spot outside for an extra key, and am planning on having another set of car keys being made as well.

On a happy note this song has been playing in my head, and I seem to hear it on the radio whenever I'm having a stressful or eh kind of day. I don't know why but it makes me smile :)

http://www.youtube.com/watch?v=ZazrQYirYLs Enjoy!

Some Recent Things

A quick update on how things are going in our neck of the woods.

First, Jay has finally been commissioned into the Navy as an Officer. I am so proud of him! He has worked so hard to be selected to be apart of this direct commissioning program. For those that don't know already Jay has already served in the Air Force for 10 years and loved it. He is excited for this new transition and is looking forward to being an officer. (Don't worry when I get a picture of him in his whites I will post it (: )
Second, we had a chance to go to Sea World together for the first time. It was SO much fun. I enjoyed looking at all of the animals and being able to spend more time at the different exhibits. We have both already been before but the shows are a little different and we got to see parts of the park we didn't before. I guess thats what happens when you only go with two people instead of 8 or more. But we had lots of fun and I didn't get too tired walking around and I slept really good when we got home!

Us with Shamu

This has become my new favorite sight. Jay is SO good with kids and I love seeing him play with them. He is enjoying all the babies that are around us right now and the chance that it gives him to hold, sooth, and play with them. This picture is cute because Jay was making Calvin my nephew laugh so hard by singing to him in Portuguese.

The other thing that we have been doing a lot lately is babysitting :). There are several families in our church ward that have kids and have let us babysit for them. It feels like every week we are watching one or more of these amazing kids and it has been so much fun.

Oh, and guess what?!?! We found out a couple of weeks ago that we are having a baby BOY!!! We don't have a name picked out yet, but we are still looking. So far the doctor says he is healthy and is right where he needs to be as far as growth is concerned. I am also starting to show :) I haven't felt him kick yet but we are hoping that that will happen soon enough. I am happy to say that I still fit into most of my clothes still but I'm sure that will change soon enough too.

21 weeks along and finally showing :)

Well we will keep you posted on the things to come. So stay tuned!

Babies, Babies Everywhere!

Its fun to see as a group of people go through the same stages of life at the same time. I say this because a couple of years ago it felt like everyone I knew was getting married, and now it seems like everyone I know is pregnant and having babies. Don't get me wrong, I love weddings, and I LOVE babies! I love the pretty wedding dresses, and the love that you see in the couple's eyes. And I think babies are so cute with their exploring eyes, and how cuddly they can be. I also even love them as they get bigger. These three little ones are especially dear to my heart!

Annalisa 12/5/2008

Calvin 06/19/2010

Livianna 08/01/2010

My husband jokes that I have baby radar, because when ever we walk into a room I almost instantly know where half the little kids are (I think its just because most of the kids are in my nursery class). But if it is true it is definitely going to start coming in handy, because this baby will be joining the Snell family in March 2011 :)

Baby Snell (Coming Soon!)