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.