Wednesday, March 25, 2009

Where it all began

So Ellen has inspired me to write out Jude's story because she wrote out Max's. I have always been very open and honest on here, and have told the story from the start. I just thought I would condense it all into one entry, and add this as my primary link to where it all started.

After Mike and I were married we talked about the fact that his parents were elderly, and the fact he had no children. He wanted his mother to see his child before she leaves us. Mike and his ex wife had lost four children due to ectopic pregnancies which was devastating for both of them. I am sure it was also hard on his mom because she got her hopes up each time. I told him that it had taken me seven months to get pregnant with Emily, and that when I had all but given up hope when she made her appearance. Therefore, I told him I would get off my birth control, but not to expect anything to happen any time soon. To our surprise a month later we found out we were expecting little Jude. At my very first doctor appointment the doctor did a sonogram to predict my due date, but couldn't find a baby. Therefore, he explained the baby may be ectopic and to come back in two weeks for another scan. I dreaded even calling Mike and telling him. Thus the tone was set for this pregnancy and the roller coaster never seemed to stop.

In two weeks I was told the doctor could see a tiny little "fetus" and he estimated my due date in September. He then explained that he saw a large ovarian cyst, but he didn't think there would be any trouble with it. Due to some issues with the staff at this doctors office I decided to switch to a new doctor who turned out to be amazing. They did sonograms every visit, and we ran the routine of a pregnancy. I told my husband joyfully that I was NOT going to worry during this pregnancy like I did with my first baby. I was going to sit back, enjoy being pregnant, and take it all in. Little did I know that fate had other plans for me.

At 16 weeks my doctor told me that since I was 35 they would like to do a level 2 sonogram to check for issues like downs syndrome, etc. She said it's highly unlikely because I was still young, but they like to be precautionary. I agreed to have this done, and she also did a re-scan that day informing me the baby looked like a girl. I was thrilled with this news dreaming of hair bows, and frilly little dresses. My husband was a bit stressed wondering what he was going to do with three girls in the house. During that re-scan she also noticed my ovarian cyst was about the size of a "softball", and I admitted I had been having a lot of pain in my back. She then scheduled me for a renal sonogram to check my kidneys. This was on top of the level 2 sonogram.

My husband and I were so excited going to the level 2 sonogram. They scheduled this around 19 weeks into the pregnancy. We purchased our cd so we could record the images, and I went to get as comfortable as you can on the medical table. We had a large flat screen TV in front of us that projected the doctors image to where we could see it. The doctor was a brisk talking older gentleman who knew his business. He started the scan, and was looking at all the body parts. He asked if we knew the sex yet, and I told him we were informed the baby was a girl. He said, "Um no ma'am this is a boy". I said "are you sure?". He said "it's a's a bat and two balls, a hockey stick and two pucks...etc etc". I just died laughing because he had a sense of humor. Mike was so happy he didn't know what to do with himself. Although during our laughter I had noticed the doctor had gotten very quiet while he was scanning the baby's brain. "What is it" I asked (never the one to wait patiently for a doctor to give me news). He then informed me that Jude's brain ventricles were slightly enlarged. I was confused, and asked him exactly what that meant. He then informed me that this was a common occurrence, and not to worry but he would like to have a fetal MRI done to see if there were any other issues. I was stressed, and he tried to reassure me saying "They are normal just on the higher end of normal". He classified Jude as having "Mild ventriculomegaly". Thus started my quest and thirst for information leading me to the ventriculomegaly board, and more. I read how baby's ventricles can measure larger than normal, and then measure fine in the 3rd trimester. I got my hopes up, but I think I knew in my heart at that point that something was wrong.

So I went to my renal sonogram, and was told I had hydronaphrosis of the right kidney. By this time, the cyst had drained so I was confused, but at that point nothing surprised me anymore. My first pregnancy was a cake walk, and this one a nightmare. So we then went to the MRI, and I remember laying there with Mike patting my hand. The doctor had wanted to wait until I was 20 weeks a long to try to get a good image of the baby's brain. We were in the tube for over an hour, and then they finally let us out. As we were passing by the doctor viewing the films I saw her on the phone. I looked at Mike and muttered, "That's not a good sign". Mike asked me how I knew, and I explained that I just did. The doctor came out, and escorted us to a back room......another bad sign........she got out Kleenex.........a really bad sign! She told us the news was not good, and my heart sank. That there had been a significant event most likely a remote bleed or stroke that happened in the choroid plexus, and thus created issues throughout the brain. She took out a piece of paper and drew a little picture...
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She said it was a bilateral bleed, and then she went on but at that point my brain skipped a few beats. She said Jude had cortical thinning, she had also said the cerebellum was small, the corpus callosum looked small, and there was fluid in his ventricles. I saw tears in the doctor's eyes, and I noticed that tears were flowing down my cheeks, but I hadn't even felt them yet. When I looked at Mike he too was crying. We quietly asked "what does this mean". She said it was very early to tell what the results would be because baby's brains can sometimes compensate, but she didn't think the result would be favorable. She said if he did survive she expected him to be profoundly retarded. She then quietly told us we had less than 3 weeks to decide to terminate. Those words rang through my mind....."terminate" How do you decide to "terminate" your child. I had always said I would never bring a child into the world that would have no quality of life, but I had also never been in this situation.

The next few weeks were full of doctor appointments, re-scans, and more. We hunted out pediatric child neurologists, and got various opinions. Every neurologist we saw reviewed the fetal MRI, and every one said there was just no way to tell. The final dr we saw was a neurosurgeon at Cooks children's. He came into the room, and sat with us fielding our questions for a long time. He informed me he had taken the MRI to the head of radiology for his opinion as well. He told me he had seen scans much worse than our sons. He also said he had seen significant (they like that word) scans were the person was "normal", and "normal" scans were the person was not. That he recently had a child in a car wreck that had an obvious birth defect of the brain, and expected to find her a vegetable. Although, when he walked into the room she was playing on the floor. He said Jude's issues could range from dyslexia up to profound retardation, but there was just no way to tell right now. He explained that baby's brains are like "plastic" and have a way of being able to compensate. He also said that strokes, and bleeds in a fetus are very common because their little brains are so "fry able", but the difference is most of the recover and Jude did not.

We then went back, and talked with the initial doctor who said Baylor wouldn't approve a termination, because it wasn't medically necessary. So my answer "If the hospital doesn't find this worthy enough to terminate than why should I?". After a large amount of stress and worry I made my decision. We told our family that if the sonogram they had planned at the end of the week showed no progress we would terminate, but if it did show progress we had to give him a chance. My family came in from Springfield, and went with me to me final scan prior to the doctor needing my final answer. The scan was amazing..... Jude' head grew, the ventricles shrank, the cerebellum grew, and you could see the corpus callosum. We figured if Jude was fighting then we would fight for him, and we had to give him a chance!!! Mike, and I vowed to never look back, and to love Jude no matter what condition he was in.

Throughout the rest of the pregnancy we scanned Jude's brain on a constant basis looking for growth in the head size. A lack of growth would mean microcephaly, and a lack of brain development. Each time we went into the doctor's office I looked around at all the women that were excited to get their sonograms. I envied them, and I wondered the percentage that would meet my fate, and prayed for them. I personally felt sick with worry each time I went in, and was praying his head had grown. Each scan did show his head grew, and Jude grew too. I watched Jude from a tiny peanut in the early stages to a large baby ready to be born. It was rather amazing! He kicked and hiccuped a lot, and my hydronephrosis got worse. I was writhing in pain at times, and just didn't feel well. Finally at about 30 weeks yours truly who went 2 weeks overdue with Emily went into early labor. Looking back it could have been because my body knew something was not right with this pregnancy.

So I spent weeks in and out of the hospital, and wearing an IV at home full of medication to keep Jude in. Mike who is afraid of needles got rather comfortable with inserting an IV into my leg. Finally I was told I was a "constant contractor" and the medications wouldn't matter. Sure enough they took me off, and I just contracted but never progressed. It was great being in labor for a month with no results....grrr! Anyway, finally the day after labor day we induced, and we all sat around in anticipation, and fear. We weren't sure what would happen when Jude was born. After twelve hours of labor Jude made his appearance screaming, pink, and beautiful. I noticed his head was a bit small, but the doctor still gave him a 9.9 on the apgar. We were thrilled!!! Maybe, our little monkey had beaten the odds, and shown the doctors wrong. Jude immediately started sucking, and was a overall a great baby. Back in our room after the delivery we were flooded with well wishers that had followed our story. Balloons, flowers, baskets, and more poured into our room, and we were beaming with pride. When the pediatrician checked Jude over he got a bill of good health, and we breathed easy...for awhile. We took our bundle of joy home, and we loved on him in peace for the next three months.

During my quest for information on Jude's situation at 20 weeks I had found links to video's showing infantile spasms. At that point, I had read how they were caused by viruses, and such but never read anything on brain abnormalities. I still had seen the video, and the movement was stuck in my head. So one night when Mike had gone to visit his friend Kevin I was alone with Jude. Suddenly Jude's head bobbed, and his mouth came open and he repeated the movement several times. I knew INSTANTLY what this was without any question, but nothing would prepare me for our journey ahead. When Mike was walking through the door I looked at him and without any question I plainly said "the baby is having seizures". The next day we packed Jude's stuff, and we headed to Cooks children's in Fort Worth.

At the hospital Jude underwent his first EEG. We watched them attach electrodes to his head with foul smelling glue, and they then watched him on a video monitor. We felt a bit ill informed, but the nurses were fabulous. Family came to see us, and phone calls poured in. I didn't answer any of the calls though because I wasn't sure what to say. I kept up with my blog as I always do because it is my expression. The next day Jude went for his MRI, and a paramedic went with us to insure Jude's safety. Later the doctor came in with a team trailing behind him. I knew it was bad news........who comes in a team? The doctor told us that Jude was having grand mal seizures, and that his brain abnormalities were extensive. He was missing his corpus callosum, he had a large cyst on the back of his brain, had bilateral closed lipped schizencephaly, and polymicrogyra (forgive my misspelling as I am not a physician). We listened when he said Jude would never walk, talk, or be normal. Then it struck me.......and I asked "Will he survive?". The doctor looked down and said, "Most children like this die in early infancy or early childhood". WHAT????????????????????????? I bawled! I kicked everyone out of the room, and I just sat sobbing rocking my baby. I could deal with a special needs child, but not death, and not seizures! This was not fair.

While I was in the room the original neurosurgeon we had seen came in because he heard about Jude. He reassured us that what happens to our baby will be up to Jude and what he can do, not what anyone tells us will happen. He said he had seen many miracles through that hospital. He also said he disagreed with the polymicrogyra diagnosis.

They then discharged us from the hospital and we left confused, and battered. We had medications with us we had never heard of, introductions to state therapy places with special acronyms, and we were lost. I felt like we were wandering a desert looking for water. I wasn't sure where to go from here. We mourned, went through self pity, and we went through questioning God. Finally, we seemed to settle into what I call our new normal. We accepted we had a challenged child, and we vowed to care for him. We then got level headed enough to question the doctor. How could he say there was no corpus callosum when it was clearly seen before?? Why do his seizures look so much like infantile spasms? So after little contact from the neurologist we decided to change doctors.

This doctor also did a 24 hour video taped eeg. He then sat down with us and EXPLAINED everything in detail. He took the old MRI images and split screened them with the eeg, and the video of Jude's seizures. He pointed to the MRI and showed us where the stroke happened and explained that since our cells come from the choroid Plexus Jude had a migrational disorder. In other words his cells went the wrong direction and his brain formed incorrectly. He also showed us how the problem was much worse on the right than the left. He said there was no "cyst" in the back it was fluid from the cortical thinning (remember the in utero mri?). It all began to make sense. He said he could clearly see the corpus callosum, but it was just thinned, and there was no polymicrogyra. Jude's main issue was the schizencephaly. We watched the eeg as he showed us Jude's seizures start on the right side, and then we compared the eeg to his movements on the video. He said we had him on the wrong medication, and that these were indeed infantile spasms. He nicely told us Jude would never be normal, but that it would be up to Jude regarding how far he will go. He told us Jude does have Cerebral palsy and that walking will be difficult, but possible. I liked his attitude, I liked the time he spent with us, and I liked that he cared for my son. Mike, and I left the hospital knowing we had a special needs child, and knowing we had a long long journey in front of us, but we felt better. It was hard to explain, but we just felt more comfortable.

We now look at Jude with pride, and love him with every bit of ourselves. We are lucky to have Emily who is such a beautiful and thoughtful little girl. We don't take any smile of hers for granted, and we have learned that all she does is special. We appreciate any milestone Jude reaches, and we have a new outlook on life. We get worn out, tired, and sometimes want to give up, but we made a commitment to Jude and we will stand by it!

Thank you to everyone that has supported us through this past 16 months.

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Mara said...

I LOVE that pic of the hands ! We received the same news that Kayden had swelling of the ventricles of her brain the same time we found out about the holes in her heart. Crazy what life gives you. Read my blog about asking why.......

~The~Wacky~Whittons~ said...

Even though I had went all the way back on the blog when I first started reading it, it still made me cry reading it here!! I am always thinking of Jude and your family!!! =)

Anonymous said...

Thank you so much for sharing your story from the beginning. What a courageous family!
Blessings to each of you.
Love from Amy & Parker Hendrix (TurtleMom)