Born of My Heart

by Brandi from the blog Born of My Heart.

Brandon and I (Brandi) tried to conceive for five years. Years of doctor appointments, infertility drugs, and negative preganancy tests were just too much to handle. We started praying about adoption. We began to look into agencies, and we became foster parents. The next two years flew by. We had two failed adoptions that were both heartbreaking, so we decided to put adoption on hold for a while.

That's when I read my email. A wonderful woman, whom we had worked with in adoption before, asked us to view the profile of a special needs little boy. We did. We saw his picture and fell in love in what we knew was our son. ~~~There is defiantly more to this story but that is another story in and of itself~~~

Joshua Matthew Lee became our son on September 17, 2009. He had a tragic little life and needed lots of love. Matthew (as we call him) was born on time, perfectly healthy! He went home to his first adoptive parents at two days old (my birthday) and was their miracle boy. At three months of age Matthew was not meeting his milestones. He was not making eye contact, had very little head control, and did not smile. An MRI then showed what would become the beginning of his diagnoses. Matthew has Agenesis of the Corpus Callosum, Agenesis of the Septum Pellucidum, Septo Optic Displaysia, Cortical Visual Impairment, Optic Nerve Hypoplasia, Epilepsy, Cerbral Palsy, Low Tone, Photophobia, Bilalteral Schizencephaly, and global developmental delays.



Matthew's first adoptive family did not feel they could parent a special needs child. After seven weeks in private foster care, we brought Matthew home. Our sweet boy is a miracle. We were told he would not smile socially~he laughs. We were told he would never make eye contact~~he tries. We were informed he would never be mobile~~we have video of him attempting to crawl. Matthew is now seventeen months old. He still has little head control. He has 100+ seizures daily even with two anti seizure meds and the Ketogenic diet. Developmentally he is still an infant. But labels have never been our "thing." We choose to see him for the beautiful, sweet, kind hearted boy who enjoys laughing while his sister cries. He will hold your hand and in doing so grab hold of your heart.

Little did we know, but eleven days after we brought Matthew home, his sister was born. Lillian Autumn Grace was born anywhere between 28-32 weeks gestation and addicted to cocaine. Her birthmom relinquished rights and Autumn (as we call her) was available for adoption. We knew about her, but were not in a position to adopt so soon. We prayed for her. She was a rockstar. She stayed just over six months in the NICU before finally being discharged in March. Autumn was born addicted to drugs and had failure to thrive. She was a measly 3 lbs 4 oz at birth. She had suffered a stroke to her spine in utero that has left her paraplegic. Her legs are "deformed" and her feet are clubbed. She has undergone three surgeries to correct the strictures that were in her intestines, and has sailed through them all.



In March our prayers were answered, and we knew Autumn was our daughter. We became a family of four in April 2010. Autumn is cognitively intact and is blossoming. She is still quite small for her age, but is crawling everywhere. She will not be able to correct the deformity in her legs or her clubbed feet and will never walk. She will not let that hold her back. Next week she turns a year old. We are constantly reminded at just how beautiful and fragile life is when looking at our blessed babies.



We never intended to adopt special needs children. All we knew was we were meant to be a mommy and a daddy. We now know that our children have taught us more than we ever knew possible.

A Word to New Moms

Today we are lucky to have guest poster Ellen from To the Max. (Thank you, Ellen!)



Today is a day to celebrate because my beautiful boy is seven years old. It's a day to celebrate because seven years ago, doctors were not sure Max would survive the bilateral stroke. It's a day to celebrate because Max continues to do so much better than those gloom-and-doom doctors thought he would. It's a day to celebrate how far I've come.

I'm feeling sentimental that Max is getting to be a big boy, but I'm not at all sad about this day, or having flashbacks to the two weeks we spent in the NICU. Yes, things still trigger memories—you've read about my sobfests, you've shared your own. But in general, time has muted the pain and devastation I experienced during the first year of Max's life.

I get e-mails now and then from moms of babies who are at risk for problems, and I can feel their agony streaming through my computer screen. I know exactly how you feel, if you are reading this. I do. And so, in honor of Max's birthday, I wanted to reach out to you.

I know that you are grieving. Why did this happen to my child? Whywhywhywhywhwy? That despair will not be there forever. It dissolves as time goes on and gets replaced by acceptance.

I know that you're desperate for answers. You want to know if things won't be so bad. You want to know what limitations your child might have. You ask the doctors. You get their e-mails and send messages. You mercilessly query moms in similar situations. You stare at other kids in the therapists' and doctors' offices and analyze how they act and move and compare them to your child. You. Just. Want. To. Know. So did I. But I can tell you now that I am glad I did not have answers back then. Because if a doctor would have told me when Max was very young that he wouldn't be able to talk fluently and would have trouble using his hands, I would have been absolutely despondent. And what good would that have done Max? I needed to have hope, for both our sakes. That hope pushed me to do more for Max, and it kept my spirits up even when his progress was slow. And now? I don't think twice about Max's way of communicating or using his hands. They're part of who he is.

I know that you're worried sick. More so than you let anyone know. More so than perhaps your husband, seemingly. You lie awake in bed at night and fret. You assess your child's every move and fear you're seeing something wrong. At times, your worries veer into the irrational—you spot a handicapped adult somewhere and wonder if that's what the future holds for your child. There is nothing I can say to make the worry go away, but I know that what helped me was learning to keep my eyes on what Max was doing on any given day—not what he could be doing. The next time your mind spirals off into a freakout, look at your child and think about the good stuff he did on that day, or the day before. Also, toss the development books. Also, dress him or her up in ridiculously adorable outfits and take lots of pictures. Your child is not the least bit cuteness impaired. Savor that cuteness.

I know that you're wistful. Or maybe even jealous. Of the other kids and moms in your life, the ones who seem so happy-go-lucky and carefree. Maybe you wonder why you're the one out of all your friends who ended up with a child who has problems. Then there are the kids you see at birthday parties, The Children Who Are Developing On Schedule. For a while, I quit going to birthday bashes for friends' kids, because it was a compare-a-thon for me; sometimes, I made my husband go. I'm not saying isolate yourself. I'm saying that if it's possible to control something that's making you feel lousy, control it. And know that all those feelings are normal, and you're not a bad person for feeling them. Not in the least.

I know that you feel guilty. Did you do something wrong during your pregnancy to cause what happened? You may even feel guilty about your own despair. Back then, I sometimes felt as if I might never be happy again, and then I'd feel like crap because I had a sweet little baby and wasn't he worth celebrating? The passage of time is the best anti-guilt antidote, but it also helps to keep a journal or start a blog. Writing things out helps give you perspective. Ahem. So does seeing a shrink. I did. There is no shame in that. You've been through a trauma.

I know that you may not be taking care of yourself. I was so consumed by helping Max, not to mention mentally and spiritually sluggish, that some days it was all I could do to shower. Hell, I couldn't even picture ever being happy again. But, of course, I am happy again. And I've realized that if you don't take care of yourself, you can't be the best possible mom for your child. So grab some private time, and make plans do the things you enjoy (at minimum, shower and find something else to wear besides sweats). Your kid will be fine without you for a few hours. You need the me-time, more so than other moms. And boy, do you deserve it.

So, yes, I know what you're going through. I feel for you, because seven years ago, I was you. And I know that you have the power in your hands and arms and heart to help your child come along. And I know that you have hope, and there is no limit on how much hoping you can do. And I know that you have a beautiful child worth celebrating.

Just like my Max.

Ellen

Kendall's Hope

"When the world says "Give up," Hope whispers, "Try one more time." ~Author Unknown

Somewhere I heard the quote "The end of a matter is more important than the beginning." Not sure where I read/heard it, but I like it. It definitely pertains to my darling Kendall. It doesn't matter where, when, or why all of her issues started, what really matters is that we cherish every single day we have with her, and every single milestone she hits. As a family we have come a very long way with acceptance. I can honestly say I wake up in the morning happy again. There were quite a few dark days in the past year when that wasn't the case. But, like every other hurdle in life, you keep on trucking, and eventually you get through it. You become stronger in the process. Justin and I have become closer. Kamden has learned patience. I have witnessed my 8 year old's faith evolve. He has an amazing understanding of the world and a relationship with the Lord. We have all learned how to pray. As a mother, I now treasure everything most parents take for granted in my children. And while I know we will continue to have occasional dark days, or self pity days, they seem to be spacing out.

I have decided to do a post that recaps Kendall's medical issues from the beginning. Mostly, so I can refer back to this all in one place. I wish every time we went to a new Dr. or had to go through Kendall's history, I could say "check my blog!" But that's not the case. Maybe this will help someone out there who, God forbid is in a similar situation. I also want to link all the medical terms to sites that explain them well. It will help me to gather my thoughts and our most recent findings with her clotting issues. I'll try to give the Reader's Digest version, but I've never been very good at giving the short story. Once I have this out, I vow to myself to focus on the "end of the matter" and stop wondering the dreaded "what if's." So here goes.

My son was born 7 years before Kendall with no issues. He was text book! My water broke at home on his due date. I went into labor on my own, and had a natural birth. My pregnancy with Kendall was more or less uneventful. I was 29 years old with no history of any health problems. My blood pressure was fine. I am RH negative, so in both pregnancies I took the needed injections. Toward the end of my pregnancy, there was protein in my urine, but I was assured that was OK as long as there weren't any issues with my blood pressure. Kendall was in a Breech position pretty much every time I had a sonogram.


At a routine sonogram around 28 weeks, they noted "enlarged ventricles." My Dr. didn't seem too concerned, but did refer me to a perinatologist. My whole family went into a tail spin with worry! But in the back of my mind, I thought everything would be OK since we had relatively healthy people in our family. The next day we were fit into the Perinatologist. He was a little man with annoying habits. I hated him from the beginning. He said her ventricles were "borderline enlarged" at only 12 mm and we were going to watch them. HOWEVER, she had two white spots in her heart...calcifications...and a hole in her heart. He said there was a chance she had Downs, and recommended an Amnio. He said we could abort, but there was only one state that would do it and we would have to move quickly. I remember looking at him, seeing his lips move, but no sound coming out, and everything was in slow motion. He left for a minute and told us to think about it. There was no thinking required. Before we got pregnant, we knew we would love our child no matter what. We declined the amnio and of course, the abortion. He came back in, we gave him our decision, and he handed us a card for a scheduled EKG at Children's Hospital. We went home and I cried for the next 2 days. I discovered the Internet and learned more about the heart than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.

We went for the EKG and received the results the same day. Her heart was perfectly normal. A month later we went back to the perinatologist for a follow up. My mom was with me, Justin at work. That day he did a sonogram, and came back in putting on the same show. He looked like he was giving a speech to a group of medical students. He asked if my mother was my sister (clearly...she isn't....she had me when she was 38....although she looks great for her age...clearly....NOT my sister....so that just pissed me off. This wasn't a time for jokes.) I was expecting a clean bill of health, but that's not what I got. She still had "borderline ventriculomegaly" and a possible "arachnoid cyst." This time we were too late to abort, and he returned with a card to go to Children's Medical Center for an MRI. I cried at the checkout desk scheduling the appointment. Before we made it to the car, I felt I was living a bad dream. My sadness quickly turned to anger. Anger because he had already sent us on a wild goose chase with her heart, and I wasn't going to go through it again. I was firing him! He didn't know what he was talking about! He was the WORST Dr. on the planet! But still, I went home, jumped on the Internet, learned more about the brain than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.

After letting it sink in for a few days, I called my OB and asked to be referred to another perinatologist. My nurse was wonderful and encouraging. My Dr. sent me to the Dr. his wife went to. It was a longer drive, but worth it. Within a week, we had a second opinion from a well-regarded Dr. who had bad breath, but didn't piss me off. He reviewed everything, performed a long sonogram, and said everything looked fine...but she may have a club foot. In retrospect, a club foot would have been great! We breathed a sigh of relief and enjoyed the rest of our pregnancy. Kamden was excited about his baby sister. He drew pictures of her (and being the gifted and talented kid he is...drew her with a club foot in all of them.) Our angel never turned, so I was scheduled for a c-section.

Kendall was born on a Sunday morning. She didn't have a club foot. Emails and text messages were sent out stating everything was fine. She had an apgar score of 10. She latched on to breastfeed immediately. She was small 5 lb. 12 oz. Her head was also small. But she received a clean bill of health from everyone in the hospital. She even passed her eye exam!?!?!? We went home 2 days later with our bundle of joy...prepared for sleepless nights.

The next 2 months, I enjoyed my Maternity Leave. I recovered from my c-section, breast-feeding was going great, and I was focused on losing the 65 pounds I gained with my 6lb baby! She was the best baby. She had a few nights with crying fits, but all in all, she was so mellow. She slept a lot. Her eyes were always a bit shaky, but I must have asked the Dr. 100 times if that was normal! In the back of my mind, I knew it wasn't but I didn't want to think about it. Everything was going so great. Then one evening, we placed her down to go to sleep and she had a series of startles. She did it 3 times in a row. I knew this wasn't normal and called the Dr. the next day.

At that appointment I insisted he look at her eyes. She never made eye contact. Something was off. We left there and immediately went to a Pediatric Ophthalmologist. She was diagnosed with bilateral congenital cataracts. Surgery was scheduled for the next week for the left eye, then the following week for the right eye. I went home, jumped on the Internet and learned more about the eyes than I ever wanted to know. I found the best case scenario, the worst case scenario, and prayed.




She recovered from her surgeries was fitted for glasses weeks later, but still wasn't tracking. We thought there may still be something wrong with her vision even though during her examination under anesthesia they said her optic nerve was fine and everything else was intact. She wasn't rolling or reaching, but we blamed that on her vision! We started ECI services with Vision Instruction and Orientation and Mobility through our school district. We also added PT since she wasn't really moving.

She went for a routine evaluation at our pediatrician's office. Her head circumference was small, but was growing along the curve. They were a bit concerned. We mentioned a shaking of her foot on occasion and absent stares and head drops she was exhibiting. Soon after we left with a referral to a Neurologist and the label Microcephaly. We scheduled an EEG and an MRI. We also had the EEG followed by an appointment with the Neurologist. Her EEG was abnormal, he said she had high tone, and wanted to have a 24 hour video EEG done the following week. Of course I went home jumped on the Internet, researched everything I could about abnormal EEG's, abnormal tone, seizures, and you guessed it. I knew everything there was to know about Cerebral Palsy. I found the best case scenario, worst case scenario, and prayed!!!



At the hospital following her video EEG, we were told she did not have seizures, but they were going to go ahead and move the MRI appointment for the next morning since we were already there. She got general anesthesia for the third time in her short 5 months of life. When the results were in, they escorted us back to our room. We knew something was up when the train of Dr.'s walked us to the viewing room. The Dr. on call told us she had a large cyst in her brain, possibly on 2 sides, and we should start therapy and familiarize ourselves with the term Cerebral Palsy (ha! I already had!) We went home thinking a left sided weakness was the end of the world. Our next neurologist appointment wasn't for another 5 months. That wouldn't do, so I called the nurse. I explained that we didn't understand and the 5 minutes the Dr. on call spent with us wasn't going to hack it. She told me Kendall had damage all over her brain. I cried on the phone with her and she was able to move our appointment up to the next week.

At that appointment we were told Kendall had a bilateral stroke on both sides of her brain. She had two Porencephalic Cysts that were compatible with a hypoxic/ischemic brain injury. She would never be normal. She wouldn't walk, see, or talk. She would be "mentally retarted." We cried with the Dr. and went home.

The weeks following I did a lot of research on plasticity of the brain. I also asked a lot of questions about why this happened. I found incredible support and information on Yahoo message boards (my list of them got so extensive, I finally had to unsubscribe!) I learned about seizures through my Microcephaly group. Kendall continued the next few months with the "startles" that to me resembled videos of Infantile Spasms I had seen. Two more video EEG's finally diagnosed her with Infantile Spasms. That is where our current search for the right seizure medication began.

A group I found called the "Pediatric Stroke Network" helped me discover Kendall's possible cause of her stroke in utero. Apparently she has the Factor V Leiden Mutation, two copies of the MTHFR gene, and her Homocystene levels are high. These are inherited from both Justin and I. I have tested positive for the Factor V, and Justin and I both have MTHFR. We have decided not to have my son tested in fear that it would be a pre-existing condition that would interfere with him obtaining life insurance in the future. We are all starting on an aspirin a day. And we will make sure we tell Dr.'s in the future if we have any surgeries or increased risk of blood clots. In a weird way, finding out a possible reason for Kendall's stroke has helped me move forward. I don't research causes on the Internet anymore. I mainly focus on therapy and equipment and how others with similar diagnosis cope day to day.

So that's it. The "beginning of our matter." We are blessed with a beautifully unique little girl,a true fighter, with a smile that lights up a room, a laugh that lifts your spirits on the toughest of days, and a whole new outlook on life.



Thank you Kendall. We know you are going to surprise everyone with what you are able to overcome!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

When I orignally wrote this... I was praying I wouldn't have to update...like ever. Unfortuately for us, 2 weeks ago on (August 24th 2009 at 16 months old) Kendall had really high blood sugars and was admitted to the hospital, only to be diagnosed with Type 1 Diabetes. (the auto-immune flavor) Oddly enough this result was a relief for us because it meant she didn't have Mitochondrial Disease...

Currently her blood sugars are evening out, and seizures remain semi-controlled on the Ketogenic Diet. She failed Topamax, Vigabatrin, and Keppra so the reduced seizures are welcomed, even though it has complicated the Diabetes Treatment! Our Endocrine and Neurology teams at Cook Childrens are working together to provide the best treatment for Kendall. She now smiles and laughs, rolls, and reaches, and is days away (I believe) from sitting on her own! Hard work and perserverence will pay off. We are blessed.



Read more about Kendall on her blog Kendall's Hope.

Brayden's Message: Enjoy Every Second

A special story by Bryaden's mom, Alicia.... A reminder to enjoy every second!

Find out more about Brayden and Alicia at their blog, Small Portion of a Life's Journey, or their Caring Bridge page.

My husband and I have been married for nearly 10 months. I have 2 girls, ages 7 and 4, from a previous relationship; he has one son, who is 3 from a previous relationship; and we share a son, who is Brayden, and he is nearly 14 1/2 months old. My husband is in the US Navy and we're currently stationed in Charleston, SC while he finishes Nuclear Power Training for the next 7 months.



My pregnancy was a roller coaster of emotions, everything from shock and denial to excitement and hope. I didn't know I was still pregnant until I was around 5 months pregnant, due to irregular bleeding, and we found out then that there was a problem. I found out during an ultrasound in about my 22nd week that Brayden had a problem with his brain. They didn't know at that time what exactly the diagnosis was, or if they did they didn't tell me that it was hydranencephaly. We were advised to terminate, but I couldn't bring myself to do that and held on to hope that Brayden would be okay.

I was scheduled for a c-section, my husband was in SC and I was in MO so this was for convenience and due to the fact that Brayden's head was measuring very large. They warned me that he would possibly not survive the birthing process if he survived the pregnancy. And if he did survive, he wouldn't be able to eat, breathe, or regulate his own body temperature...and he wouldn't leave the hospital. Brayden decided to come earlier than the scheduled c-section & although I had complications from my c-section, Brayden was a strong little man and didn't need any help after birth.



Aside from his head being large, he didn't appear to have any other health problems. We thought, perhaps, that the prognosis previously given had been wrong.



Since the doctors told us that there was absolutely no hope for him to survive and sent us home on hospice care, telling us to prepare for his passing, we were devastated and prepared for the worst.



My other 2 girls were well informed to the fact that their little brother had a problem with his brain, and that he would probably not be with us for very long. It was a couple of months before we realized that he was doing very well, despite the odds given to him, and many more months before we stopped planning for his passing and celebrating his life with us instead.

I found great information at the Rays of Sunshine web site. I joined the Yahoo support group through that site to network with other parents of children with hydran. Through them I found a great sense of optimism for Brayden and his life, rather than the doom and gloom outcome provided by the doctors in the beginning.

I also found great support through the hospice program in the early days. They offered a supportive staff, especially our nurse and pastor who visited with us every few days. We were dropped from the program after we elected to have a shunt placed to relieve the CSF pressure building up in Brayden's head. That was a difficult decision, I had relied on the hospice care for the emotional support they provided, but that surgery saved my son's life!

Brayden's diagnosis is Hydranencephaly ...a large portion of his brain was damaged in utero, ultimately by a stroke, and replaced with sacs of cerebrospinal fluid. The cause is unknown. We were told that he didn't have a brain, when in fact he does have pieces of his, which are apparently doing some work of their own.

Brayden is not on any medications! That's a huge feat considering his condition!! He receives Early Intervention services every other week, Physical Therapy twice a week, Occupational Therapy once a week, Speech Therapy twice a week...and visits with the neurology team every 6 months.

He is defying the odds, growing stronger every day, and proving himself to be nothing short of a miracle!

Brayden is stubborn and proves that during his therapy sessions by doing the complete opposite of what he's supposed to do, while smiling every second of it. His dad plays the guitar, so he LOVES that, but really loves any kind of music...even more if there are lights involved! He loves the people that surround him, his daddy and I and his sisters, and will show great amounts of unhappiness if he's not with us...especially me, he's a mommy's boy through and through :) Most of the time, unless he's hungry or sleepy, he's a happy little man full of smiles and chuckles for everyone he loves.




My advice to other parents is to never take the Dr's word, or the textbook diagnosis and prognosis, as the last word. There are stories of children and adults alike, defying the odds given to them and proving their doctor's prognosis wrong. Having hope for your child can prove to grant miracles in itself. Keeping the levels of optimism high is important, a happy atmosphere is nurturing for any child, especially one that is said to be teetering on the edge of life here on Earth. Read everything you find about your child's condition, knowledge is power, and use it to advocate for your child and fight for what you know they need to provide them with the best quality of life possible!! Most importantly, enjoy every second...




Resources I find helpful:

~the book Changed by a Child: Companion Notes for Parents of a Child with a Disability by Barbara Gill
~ my own blog full of information and inspiration
~blog surfing has proven to provide massive amounts of inspirational stories!
~networking with parents in your area with special needs children
~national parent-to-parent networking for parents of children with your child's condition specifically
~online support groups...search Yahoo Groups and you'll find one for your child's condition

Hope for Jude

Today's story is by an amazing mom, Jenn, of the blog Jude: The Diary of a Baby and a Stroke.


I am married to the love of my life, Mike. I have a daughter, Emily, who is ten from a prior marriage, and my son, Jude, who was born in September of 2008.

I was so excited to hear that we were going to have a baby! I thought of names, planned room ideas, and visioned a perfect baby in my arms. My first pregnancy was a breeze, but I worried over everything so with this pregnancy I was determined to be relaxed. I remember telling my husband I was going to "sit back and enjoy my pregnancy". I was in for a shock, because that is not how things went.

I had issues throughout my pregnancy, which was unusual, because my first pregnancy was fine. At three months I had an ovarian cyst rupture, I then developed hydronephrosis of the right kidney, I went into early labor at 31 weeks, etc. The big issue we had was at four months when I had my level two sonogram. I was convinced Jude was a girl, and that’s all we were focused on was finding out the sex. Little did we know we would find out more. We went into the level 2 sonogram, and the doctor was very nice guiding his way around the baby. He announced we were having a boy, and that everything looked great. Then he got very quiet, and I noticed he was scanning the brain….and my heart sank! I knew instantly there was a problem. My husband had lost five babies with his first wife due to ectopic pregnancies, and my mind immediately turned to him. Calmly but concerned I asked, "What is it?". The perinatologist replied, "Your baby's brain ventricles are slightly enlarged, it’s probably nothing at all, but I suggest a fetal MRI to rule out any issues". For some reason I knew at that moment something serious had happened. I scanned through my mind wondering if I had done anything wrong during my pregnancy. A few weeks later we completed the fetal MRI, and we were told that Jude suffered a bilateral brain bleed, or stroke. The doctor explained that she couldn’t tell us what the results would be, but that it didn’t look favorable. We were given the choice to terminate the pregnancy, and we struggled with this. We took the MRI to the neurologists at Cooks Childrens, and the head of radiology at Harris. The doctors were fabulous, and took their time answering any questions we had. This baby had been growing inside of me, and both my husband, and myself were very attached to him. Although, the idea of bringing an incapacitated child into the world seemed like it would be very cruel. The doctors explained that babies suffer strokes a lot in utero because their little vessels are "so friable". But the difference is most babies recover from this issue and Jude did not. The doctor explained that Jude’s brain could still compensate, and that his issues could range from mild dyslexia to profound retardation. We decided we could not terminate a pregnancy based on possible mild dyslexia, and we had to give our baby a chance. Even through the stroke he kept on fighting, so we had to fight for him!! Throughout the rest of the pregnancy the perinatologist was amazed as Jude’s head continued to grow on target, and we got our hopes up!

We gave him the name Jude because he is the patron saint of lost hope. He helps those that have no hope left find their way again. We thought the name was fitting.

During the pregnancy I cried a lot, and I started my blog....




Releasing my emotions in writing seemed to help me deal with this situation head on. My husband was also my rock, and he comforted me when no one else could.

Jude’s birth held great expectations because of the news we had been given. My husband, and my cousin Sarah were both in the room with me. Jude’s birth took about 12 hours, and he had a slight shoulder dystocia when he was born. There was panic in the room due to the shoulder issue, and I remember everyone yelling at me to push as hard as I could. I also remember the doctor yelling, "After everything you have been through this baby is NOT going to have issues from shoulder dystocia", and at that very moment she wiggled him free. We all held our breath waiting for Jude to cry, and then we heard him loud and clear. We all breathed a sigh of relief, and Jude scored a 9.9 on the apgar.



After his birth we took home what we thought was a happy, and healthy baby boy. At three months old Jude suddenly experienced a grand mal seizure. After that he began to have up to 8 seizures a day, and our dreams were crushed.

We went through an emotional roller coaster that never seemed to stop and let us off. We wrestled with our emotions, our lack of sleep due to Jude’s seizures, and constant hospital stays. We felt ripped off, and like we had been cheated, but realized we were given a blessing. Jude has inspired everyone in my family, and has taught my daughter compassion, and empathy. We wouldn’t trade him for the world!




Jude had a bilateral stroke in utero that caused a neuronal migrational disorder which caused bilateral closed lipped schizencephaly. Originally in the hospital we were told Jude had a long list of conditions, and were told he wouldn’t "walk, talk, and wouldn’t live past early childhood". We have since been told otherwise, and have compared the new neurologists findings to the MRI, and concur with the above listed condition. When I was told he wouldn’t live I was furious, and mad at everyone. I then turned my anger into a march specifically for Jude and to make sure that what I was being told was correct. I then found out it wasn’t, and that with treatment Jude could go far. What Jude accomplishes will be up to Jude! No one can tell me that he has an expiration label! I believe in being your child’s healthcare advocate.

We were instructed by a neurologist that Jude needed to be on phenobarbitol, when they didn’t work we tried topamax. When neither of those controlled the seizures we felt at a loss. The seizures became an everyday routine for us, and we knew Jude would never develop properly with them. We then picked a new neurologist who tried vitamin B6 that didn’t work, and then Depakote. The Depakote has been our saving grace!!!

I follow many bloggers that inspire me. Ellen at the Love that Max blog inspired me. I had talked to Liz Logelin in the just mommies forum, and followed her husband's blog when she passed away after giving birth. I figured if he could make it through something so terrible then I can surely make it through this. I still had my loved one, and would put everything I could into Jude’s future.

Jude is seizure free at the moment. He does have Cerebal Palsy that affects his upper torso more than his bottom. My husband had to quit his job, and the medical bills are outrageous, but we are very happy we have our little Jude. He is also smiling, and laughing which he never did while on the pheno! All we wanted was to see our baby Jude laugh......and now we can!



One the phenol Jude was like a little zombie that didn’t react to anything. After being weaned off Jude seems to have surfaced. He smiles at my voice, and loves to be held. He has the funniest little pterodactyl laugh.. You can see that Jude is determined to roll over, and that he really wants to crawl. He gets very frustrated at his limitations, but I believe this will help him prove the doctors wrong.




Our goal is to get Jude to walk someday. We understand he won’t ever be "normal", but who is really? We also put time aside for our family, and friends, and to always take time to listen to each other's emotions.



My advice to other parents is to do whatever research makes you feel better, and make sure you stand up for your child’s rights. The doctors are only doing what they think is best, but remember they are human and can be wrong. I had a hard time accepting help from other people, and someone gave me great advice regarding that. My aunt told me "Jennifer everyone feels helpless, and wants to do something. Let them give to you because it makes their hearts feel better". In addition, once you decide to proceed through the pregnancy, never look back and question anything. Also, never wonder if you did anything wrong, because you didn’t. I had a doctor tell me, "You are not a woman who abused your body with drugs like some women do, you just got the short end of the stick". It was brutal honesty, but that sentence has stayed with me. I have now become an advocate for pediatric stroke awarness, and for the March of Dimes. 1 in 4000 babies will suffer a stroke, that means you have a 6times greater chance of having a baby with stroke than many other childhood issues. They just don’t talk about it because there is little they can do once a stroke happens. Although we cannot avoid a stroke in utero, there is so much we can do to help our children live a stroke free life. Strokes are fast becoming one of the top ten killers in children. Be sure to learn all you can do to avoid this situation. Have your children exercise, eat well balanced healthy meals, and do not smoke around them!

For more information about pediatric strokes or stroke in utero, visit:

I am Pregnant: Babies Forum - Ventriculomegaly or
Pediatric Stroke Network