Saturday, August 7, 2010

Jude's story

I have received an overwhelming response from Emily's news brief yesterday, and that's wonderful. One man even sent a donation of $500, which will help so many children. In addition to donations, and interest in helping her, I have received several questions regarding Jude's condition. I have started directing people to the blog. I then realized my blog is lengthy, and rather difficult to navigate sometimes. Many people have heard Jude's story, but I thought I would write it again for those that have never heard it before. So this is the condensed version.

When I married Mike I knew he wanted a baby. He and his first wife had suffered through five miscarriages, and it had been very difficult. She had a disease that prevented a viable pregnancy, rather they were ectopic. Mike's parents are in their seventies, and he had expressed to me that they really wanted to see his child before they passed away. So he was elated when I came to him, and told him we were expecting. It seemed the pregnancy was plagued with problems from the beginning. At first they couldn't find the baby via a sonogram, and the doctor worried the pregnancy was ectopic. Mike immediately began to panic because of what he had been through before, but luckily a little baby was seen only two weeks later (what seems a very long 2 weeks later). From there things were pretty much normal. We dreamt of the baby we would have, we guessed the sex, and we watched the baby grow. My OB has sonograms in every room, so with every visit we got a sneak peek. We went through our nucuel test, and everything looked perfect. The OB even said she thought we might be having a girl. So let me point out that the multiple in office sonograms showed everything was perfect with the preganancy! Since I was 35 my OB was precautionary, and requested I see the perinatologist next door for a level 2 sonogram. So my husband and I made our appointment, and went in all excited to finally find out for sure the gender, and that everything was fine.

When I settled myself into the table I stared at the large screen on the wall where the baby would be displayed. We watched the doctor go over every inch of our baby telling us everything looked perfect. He asked us if we knew the sex, and we said "no, but the OB thinks its a girl". He then made several off color remarks about the fact this baby was very much a BOY! In the next instant the doctor turned from joking to very quiet, and my motherly instinct knew something was wrong. "What is it?" I asked. "Your baby's brain ventricles are on the upper end of the normal range". "Well what does that mean?" I asked. " It means it's normal" he said. I am sure he was trying to calm my fears, but it sounded more like a father putting an end to a conversation. Then he said that just in case he wanted to get an amnio, and send us to UT Southwestern medical center for an in utero MRI. "That doesn't sound that normal" I said, and he just looked at me. I submitted to the amnio. I had had one with Emily.........(which was a very normal pregnancy), so I was prepared for what it would be like. I then knew there would be a week long wait or more before we heard if there was a genetic disorder. It wasn't the longest week EVER! During the wait they set up the appointment for the in utero MRI. Who knew you could MRI a baby before the baby had even been born.

I soon received a phone call that the amnio showed everything was normal, this brought much relief. So then we had to tackle the MRI. I hate closed spaces, I panic in elevators so much that I would climb several stories of stairs to avoid them, so you can only imagine me stuck inside something as enclosed as a coffin is. Mike was able to stand in the room with me, and he held my hand while they scanned the baby. Once it was over they came to escort us out, and I glanced inside the room where they were viewing the images. I saw the doctor resting on her hand on the table, covering her mouth, staring at the images in front of her, and I knew it wasn't good. After about fifteen minutes the doctor came to get us, and she escorted us to her office. When she pulled out a box of kleenex I knew it wasn't good news. She initially told us that we needed to keep in mind the "fetus" was only 19 weeks, and it was difficult to image a brain so young. Then she cleared her throat and told us "with that being said I have only seen one other case like your sons, and it wasn't a good result". I think it was the first time I had heard our baby called "our son". She talked in very technical terms, but my brain seemed to grasp everything, and before I knew it there were tears running down my face. I looked down, and when I looked up she had tears running down hers. "I am sorry" she said. "There are people that come in here that shouldn't be parents, but when I get a couple that truly wants a baby it breaks my heart to deliver news like this". So what had she said? She had taken out a sheet of paper, and drawn a brain. On either side of the brain she had colored in two black spots, and then said "it appears there has been a hypoxic ischemic event, these dark spots appear to be blood". It was months later that I finally realized her fancy words meant "stroke". She then said this had caused massive damage to the brain, and her prediction was the baby would have serious issues. She then said she would send the information over to our perinatologist.

Before we went back to the perinatologists office we visited a neurosurgeon with Cook's children hospital. He was phenomenal. He said that a baby's brain is like elastic, and even though the brain cannot heal permanent damage, it can reroute itself. He also said the brain is the most misunderstood organ in the body. He said the baby could have no issues, or issues ranging from dyslexia to severe. He then went on to tell us how many babies suffer strokes in utero up to 1 out of every 4000. Some people won't even know their child had a stroke because the brain heals itself, and they may just present with ADD, or some other issue later in life. After we left his office we felt a bit better, only to fall down again when we went back to the perinatologist for the follow up from the MRI. I can only imagine how the doctor felt coming into our room. He half smiled, and said he assumed we knew what they found on the MRI, and we acknowledged we did. His next words will always stay with me. He said "this is where we decide if you want to continue the pregnancy. If you do then you move forward, and you never look back wondering what if, and if you don't the same rule applies". We sighed. We knew we would keep "Jude", but we asked anyway. "What if we decided not to continue". He said " then you would have to go to the abortion clinic in Dallas because the hospital will not recognize the need for an abortion regarding a pregnancy that may be alright". WOW, I thought. Flashes of making my way through to a clinic with people picketing outside rang through my head. Then the doctor spoke "there are some people that have a type a personality and cannot handle a child with special needs. In fact, more often than not if a child is born to those parents and they are informed something has gone wrong...they will leave them behind". I was shocked! Really? Could people do this? So Mike, and I looked at the doctor and informed him that we cannot abort a baby that might or might not have issues, he was our son, and we were continuing on. He accepted our answer, and said they would scan Jude's head every two weeks looking for growth and development. If the baby did not grown we knew there were severe issues, and he might not make it.

The rest of the pregnancy was plagued with major issues. It's almost like my body was trying to terminate. It's was almost like nature was trying to take over. I had kidney issues, a serious blood and platelet problem, and early labor starting at 31 weeks. I was in and out of the hospital, wound up with an IV in my leg at home, and constant monitoring that would communicate via a phone line to a nurse on call. During this time Jude's head circumference...........grew..........every week. The doctors were baffled, and began to call Jude "a true miracle". Once we got to 38 weeks they requested we update them on his progress because he would give hope to other babies. Then it was time to deliver. After 12 hours of labor with Mike, and my cousin at my side I gave birth to Jude. It was of course, not uneventful! The epidural only took on one side, my platelets plummeted, and Jude suffered shoulder distosia. I remember the doctor saying "Oh hell no, this baby is NOT going to have shoulder distosia after everything he has been through". She commanded that my cousin (a mid wife), and the nurse crawl on top of me and push my stomach down as hard as they could. Mike was panicking, and I was pushing as hard as I could, and then we heard a cry, and I looked immediately at Jude's head. "It's small I thought" but not to small. Jude looked squished, but so beautiful, and he let out mighty cries.

The next day the pediatrician came in to tell us Jude checked out in the nursery 100% healthy, and we felt so relieved. Then the next day we found out that there were some issues on the head sonogram, but that he still seemed to be normal. He had perfect reflexes, was eating normal, reacted normal, and was deemed 100% normal with a 9.9 on the Apgar! We were more than thrilled at this news, we had our baby boy, and we thought he had overcome the odds!!!

We spent three glorious months assuming Jude was fine. He rolled over, was holding his head up, smiled, and seemed like the perfect baby. Emily had a beautiful brother, and she had become the perfect sister. I spent a lot of time playing with Jude, we planned Emily's 10th birthday party, I started a college fund through a whole life policy for Jude thinking he was healthy, and we moved on with our lives. We moved on... until one night when Jude was 3 months old. Mike had gone to a friends house. I was home with the kids, and suddenly Jude began to open his mouth over, and over, and I noticed his eyes fluttering a bit. Being a second time mom.......I knew........this was NOT normal. Mike walked through the door, and I said "I think the baby is having a seizure", and Mike fell down in front of Jude crying, it broke my heart. We took Jude by my cousins who looked at him opening and closing his mouth. She said it was different, but maybe just a baby thing. I still didn't feel comfortable, so we took him up to Cook's, where and I wrote down on the sign in sheet "possible seizure?". Suddenly I had a nurse rushing out to see Jude, and he looked into Jude's eyes. He then took us to the back immediately, and told the doctor something about Jude "focusing on the left", and possible Grand Mal seizure. WHAT?

We waited patiently to hear the results from the MRI thinking they would probably show something. They showed a lot. It no longer showed the blood from the stroke, but it showed massive damage. The doctor that came in just ran through the motions, and said Jude would never be more than a baby, he would never walk, he would never talk, and he probably wouldn't make it past five. We expected to hear news, but not that news. We were devastated. I was angry! I left the hospital staring at women with normal children, or who were pregnant envious of their happiness. I left that hospital, and left my normal life behind.

Once we went through our steps of grieving we gathered ourselves, and pulled ourselves up . We found a new neurologist who did not put an expiration label on Jude. We sought out therapy, a nurse, and all the help we could obtain. We battled insurance companies, and the state to make sure Jude had the best he could get. We spent countless hours in and our of hospitals. He battled a round of pneumonia (which is what will normally kill a child in Jude's condition), and we learned of countless other mothers in my same circumstance. I met amazing people with amazing children that had special needs, and then I learned to never look through someone that is different again. I learned to asked questions, to educate myself, and to put down my pride and accept help when it was offered. I learned that many times I had to console others when they thought they were consoling me. It was a different way of life, but one that seemed to offer more than what I thought it would. During one of Jude's many hospital stays where we smelled the horrible smell of EEG glue, Emily stepped forward. She was lonely, and bored, and also needed to find a purpose to work through what was happening. Emily came up with the idea to help others, and we started Emily's Smile Boxes. Suddenly little Jude had inspired my amazing daughter to do something heroic, Jude had at such a small age, had a legacy.

We know that Jude's condition is never truly stable, and can change at an instant. He has such a severe form of epilepsy that it has it's own label, but labels don't matter much to us so I won't post it. He is also legally blind, and has cerebral palsy. His immune system is very vulnerable, and he receives several medications several times a day. In December of 2009 Jude suffered a horrible bout of the rotavirus, and CDIF. After Jude recovered we had a doctor tell us he was amazed Jude made it through, but he is our little fighter. We are so blessed, and so thankful for Jude. We have met amazing people through Jude's illness. I encourage you to click on the links to the right to read about Kendall, Max, and Rheagan Leigh, and their heroic mothers. Jocalyn has been invaluable to me with information, and education. SO our road has been difficult, but laced with so many blessings. I believe someones story is always worse, and we should be thankful for what we have been given. We pray for as many days as we can get with Jude. The first neurologist may have been harsh but at near the age of two Jude is still about a 3 month old, but we love his darling smiles.

I feel like Jude follows the slogan like the Army's. He has done more by the age of 2 than most of us will do in our lifetime!

1 comment:

Karen Fuller said...

I found your website through Reality Steve, and I have been so moved by you and your family. I think my son is a couple of weeks younger than Jude, so it has really touched me as a mom to see how well you manage your life. Your love for both your children really shines through, and it amazes me how honest you've been willing to be with the world. Blessings and prayers to you and yours, and I'll leave my email address so you can let me know how to donate to Emily's cause.

Praying for you in Raleigh, NC:
Karen Fuller