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As I stood there, looking at my little girl and knowing that life had just gotten a whole lot harder for her... feeling like I had no answers for her questioning face. Feeling scared and alone, I sobbed... At that point, Jilliann began to scream... it was unlike any scream I had ever heard a child make! The only way, that I know how, to decribe it is... as if a woman is about to deliver her child, and is baring down (part scream/part groan) and very loud. I had no clue what she was doing, but I knew it was not right... I started yelling out of the room, saying "come back in, send a doctor, something is wrong". Her scream continued, as medical staff were running in the room and yelling to others to get the doctor. Then her body started jerking all over the place... I then, knew what was happening... Jilly was now having a seizure! At that point, I did not know that seizures are common with strokes. I did not understand why she was having a seizure. As the doctors were running into the room and surrounding her bed, I found myself stuffed in a corner at the head of her bed watching every detail of what was happening. It is a bit blurred, which I am thankful for... because I truely thought I was watching my child's death... a horrible, painful death. I remember looking around the room at one point, and seeing nurses and doctors with tears in their eyes, I thought for sure that there was NO hope.
JILLIANN SEIZED FOR A FULL HOUR... a full tonic clonic seizure... her color was a mottled blue and white, her chest and abdomen sucked in with every breath, that was being assisted with a bag and mask. At first, a doctor was assisting her breathing... then he handed it over to the man who comes to your hospital room each and every night... to make sure you have the correct O2 equipment, and your mask and bag. At that time, I did not know that he was a respiratory therapist, nor did I know that he was the most qualified person to assist Jilliann... I felt very confused about that, and could not understand a doctor allowing someone else to do something so important as to keep my Jilly breathing. The "man who came to help" held the mask tighter on her face, it appeared as if he was smothering her, vs. helping her... I started questioning him... but he was ignoring me (I later realized, that he was concentrating on his job: to keep my Jilly breathing!!! ) Someone had to calm me and say... he knows what he is doing, he is the best! Her little body was lifting off of the bed uncontrollably, I remember a doctor, staring at the monitor and giving out orders for medications. And worst of all, I remember thinking... that it would be better for Jilly to die, than to continue to endure this seizure, that looked like it was going to tear her body in half. After about 45min., I pushed my way out of the corner and collapsed into one of my older son's arms and cryed out "what am I going to do, what am I going to do"??? I just could not imagine going on, with out my Jilliann!!!
Finally, the seizure stopped and the doctors rushed Jillian down to do a MRI of her brain. They wanted to see if she had another stroke, or a brain bleed. At this point she was unconscious, but breathing on her own. It seemed like a eternity, before they returned with the stroke team... to tell me that Jilly had two more stroke areas now. At that point, I believed that Jilliann would lay in a bed, unconscious, the rest of her life. I did not know another child, who had a stroke... it was something that I knew was possible for a "heart child", but I did not know that a child could survive one and ever have any quality of life again. I DID NOT KNOW HOW TO FIGHT THIS FIGHT!!!
I remember, talking to our Stroke Team Neurologist again... at that time, I had questions:
Would Jilliann survive this, would she ever wake up, would she ever do anything ever again, and I remember asking specifically: "How can she ever fight this?... She has been through so much already"! Well I will never forget what I was told... IT IS YOU, THAT NEEDS TO LEARN TO FIGHT THIS, JILLY ALREADY KNOWS HOW TO FIGHT... SHE HAS DONE THAT SINCE THE DAY SHE WAS BORN!!! Then our neurologist, gave me a hug... she probably does not know how much that meant to me... but it did give me hope!
I did not know how to fight something, when Jilly lay there semi-conscious for days... I just kept asking, "when will she wake up" and the answer was always, "her brain needs to rest". I knew they could not answer that question for me, although I had some wonderful talks with the Neurologist, who explained that babies/children's brains are amazing... they are still growing and maturing, and are even capable of compensating for a damaged area... hearing that from the Neurologist, did give me hope!
3 days later, Jilliann began to have seizures again... they were much more mild, but she was on antiseizure meds., more were added... and again, Jilly went down for another MRI of her brain. I feared the worst, that this was just a cycle of strokes until she could no longer live.
BUT... I WAS WRONG!!! Amazingly, with this MRI... we learned that no only did Jilly NOT have another stroke... but, the two areas that showed in the previous MRI, were no longer there. They could not explain it... maybe there was some type of shaddow on the previous scan... but what mattered is: Jilly only had ONE stroke area!!! (one is so much better than two or three, right!!!)
Within a week of the stroke, Jilly started to wake... she was extremely fussy, and did not find comfort in snuggling with me... like we used to do. It broke my heart, to think that maybe Jilly did not remember me! She had moaned and tossed her head back and forth for a week... she had rubbed all the hair off the back of her head (except the hair that grew, just above her neck). But slowly, I saw signs of my old Jilly... then she smiled for her big brother... that was the day I smiled again!!! And from that day on, I will never give up... like I had done! Jilly never gave up, she fought through it all, SHE KNEW HOW TO FIGHT, IT WAS ME THAT NEEDED TO LEARN HOW, AND IT WAS JILLY, WHO TAUGHT ME!
It has been a long journey, fighting back from this stroke... but together, we will do it!
Today, March 1st, 2010 is Jilly's 2yr. anniversary of her " LIVE DAY", the day she survived a stroke. Jilliann Rose, mommy could not be more proud of you! You are my HERO, and you have taught me so much! I love you Jilly, with all of my heart, I am sorry that you have had to endure such difficult things... but, I am here for you... I will fight for you, when you are too weak to fight... I will be there for you always! You are my precious rose, beautiful and amazing!!! Love, Mama
JILLIANN SEIZED FOR A FULL HOUR... a full tonic clonic seizure... her color was a mottled blue and white, her chest and abdomen sucked in with every breath, that was being assisted with a bag and mask. At first, a doctor was assisting her breathing... then he handed it over to the man who comes to your hospital room each and every night... to make sure you have the correct O2 equipment, and your mask and bag. At that time, I did not know that he was a respiratory therapist, nor did I know that he was the most qualified person to assist Jilliann... I felt very confused about that, and could not understand a doctor allowing someone else to do something so important as to keep my Jilly breathing. The "man who came to help" held the mask tighter on her face, it appeared as if he was smothering her, vs. helping her... I started questioning him... but he was ignoring me (I later realized, that he was concentrating on his job: to keep my Jilly breathing!!! ) Someone had to calm me and say... he knows what he is doing, he is the best! Her little body was lifting off of the bed uncontrollably, I remember a doctor, staring at the monitor and giving out orders for medications. And worst of all, I remember thinking... that it would be better for Jilly to die, than to continue to endure this seizure, that looked like it was going to tear her body in half. After about 45min., I pushed my way out of the corner and collapsed into one of my older son's arms and cryed out "what am I going to do, what am I going to do"??? I just could not imagine going on, with out my Jilliann!!!
Finally, the seizure stopped and the doctors rushed Jillian down to do a MRI of her brain. They wanted to see if she had another stroke, or a brain bleed. At this point she was unconscious, but breathing on her own. It seemed like a eternity, before they returned with the stroke team... to tell me that Jilly had two more stroke areas now. At that point, I believed that Jilliann would lay in a bed, unconscious, the rest of her life. I did not know another child, who had a stroke... it was something that I knew was possible for a "heart child", but I did not know that a child could survive one and ever have any quality of life again. I DID NOT KNOW HOW TO FIGHT THIS FIGHT!!!
I remember, talking to our Stroke Team Neurologist again... at that time, I had questions:
Would Jilliann survive this, would she ever wake up, would she ever do anything ever again, and I remember asking specifically: "How can she ever fight this?... She has been through so much already"! Well I will never forget what I was told... IT IS YOU, THAT NEEDS TO LEARN TO FIGHT THIS, JILLY ALREADY KNOWS HOW TO FIGHT... SHE HAS DONE THAT SINCE THE DAY SHE WAS BORN!!! Then our neurologist, gave me a hug... she probably does not know how much that meant to me... but it did give me hope!
I did not know how to fight something, when Jilly lay there semi-conscious for days... I just kept asking, "when will she wake up" and the answer was always, "her brain needs to rest". I knew they could not answer that question for me, although I had some wonderful talks with the Neurologist, who explained that babies/children's brains are amazing... they are still growing and maturing, and are even capable of compensating for a damaged area... hearing that from the Neurologist, did give me hope!
3 days later, Jilliann began to have seizures again... they were much more mild, but she was on antiseizure meds., more were added... and again, Jilly went down for another MRI of her brain. I feared the worst, that this was just a cycle of strokes until she could no longer live.
BUT... I WAS WRONG!!! Amazingly, with this MRI... we learned that no only did Jilly NOT have another stroke... but, the two areas that showed in the previous MRI, were no longer there. They could not explain it... maybe there was some type of shaddow on the previous scan... but what mattered is: Jilly only had ONE stroke area!!! (one is so much better than two or three, right!!!)
Within a week of the stroke, Jilly started to wake... she was extremely fussy, and did not find comfort in snuggling with me... like we used to do. It broke my heart, to think that maybe Jilly did not remember me! She had moaned and tossed her head back and forth for a week... she had rubbed all the hair off the back of her head (except the hair that grew, just above her neck). But slowly, I saw signs of my old Jilly... then she smiled for her big brother... that was the day I smiled again!!! And from that day on, I will never give up... like I had done! Jilly never gave up, she fought through it all, SHE KNEW HOW TO FIGHT, IT WAS ME THAT NEEDED TO LEARN HOW, AND IT WAS JILLY, WHO TAUGHT ME!
It has been a long journey, fighting back from this stroke... but together, we will do it!
Today, March 1st, 2010 is Jilly's 2yr. anniversary of her " LIVE DAY", the day she survived a stroke. Jilliann Rose, mommy could not be more proud of you! You are my HERO, and you have taught me so much! I love you Jilly, with all of my heart, I am sorry that you have had to endure such difficult things... but, I am here for you... I will fight for you, when you are too weak to fight... I will be there for you always! You are my precious rose, beautiful and amazing!!! Love, Mama
