AFTER THE FONTAN TAKEDOWN: NOVEMEBER 4TH, 2010
Monday, October 24, 2011
FONTAN TAKEDOWN, NOV. 4TH, 2010...AND: HALLOWEEN... 2010 (after the Fontan, before the Fontan Takedown)
AFTER THE FONTAN TAKEDOWN: NOVEMEBER 4TH, 2010
October 24th, 2011
Nothing major to post... Jilly is doing wonderful!!! She is growing and learning, strengthening, and become a feisty (almost 5yr. old)! Her tummy issues are still a problem, but not a big one... she continues to retch and vom. everyday... but usually only a couple of times, and she deals with it amazingly! She has been on oxygen 24hr./day for over a year and we expect her to need it until her next heart surgery (possibly next Spring or Summer)... the next scheduled proceedure will be a heart cath. in the Spring which will determine the next move.
Jilly has 13 therapies/wk. and loves it... mostly! She waits for her 4 different therapists to come and quickly tells them bye when they are done (or she is done).
Jilly is such a happy, funny little girl that brings so much Joy to our lives!!! She weighs 40lbs. which is just amazing for a cardiac kid who is not quite 5yrs old.
We thank God, for all these wonderful things he has blessed us, and her with!!!
Heart hugs!!!
Jilly has 13 therapies/wk. and loves it... mostly! She waits for her 4 different therapists to come and quickly tells them bye when they are done (or she is done).
Jilly is such a happy, funny little girl that brings so much Joy to our lives!!! She weighs 40lbs. which is just amazing for a cardiac kid who is not quite 5yrs old.
We thank God, for all these wonderful things he has blessed us, and her with!!!
Heart hugs!!!
Sunday, September 4, 2011
Monday, August 15, 2011
Participating in "Every Heart Has A Story", Hosted by Stefenie Jacks
This is the second year, we have particiaped in this event... it is a wonderful idea, to raise awareness of CHD's and to just share our story with those who may not know the whole thing! Of course, this has to be the shortened version as 4 1/2yrs. worth of happenings would be way too long for the readers... and trust me, it seemed way to long going through it all... but, it is OUR JOURNEY and first of all, I want to thank God for this journey. There has been many trials, yet this is God's way of bringing us closer to HIM! I can say, today I do feel closer to God and I hope that every year brings the same. Soooooo, here is Jilly's Journey: Jilliann Rose was born on Jan. 5th, 2007. We are not her birth parents and did not know her at this time, but this is where Jilly's journey with HLHS started. A beautiful little girl, born with so many problems... not only did she have HLHS, but also DORV and Mitral Atresia, that was just the heart defects. Jilly also had a cleft palate (not effecting her lip) and a short jaw bone (Micrognathia), and was born with severe Low Tone (Hypotonia). Jilly had her 1st open heart surgery, the Norwood, at 3 days old. Afterward she struggled with abnormal heart rythems and required pacing. Once she got through those issues, the next issue was feedings. Having a cleft palate, increases the work of sucking... having a heart defect also increases the work of sucking... and having reflux on top of that just made it more difficult. As the records from The Childrens Hospital of Philadelphia (her 1st home, although she was born next door at the University hosp. of Penn., prior to the birthing unit at CHOP being build)... anytime the speech therapist came to work with Jilly on feedings... the parents were not present. To me, that is so sad! So at some point around 3wks. old, it was decided to place a feeding tube in Jilly and perform the Nissan Fundoplication to help with the reflux. Jilly went home to NY at around 4wks. of age... and sadly was admitted to our local Hosp. a few days later. She was severly dehydrated and malnourished... This is when our family came into the picture. We were aware of the Birth parents and the situation. We had heard that little Jilly was left at the hospital, alone. I could not imagine her being alone with all she has gone through... so I went to hold her. There was something so special about her, and the next day... I came to hold her again. I FELL IN LOVE!!! I moved into the hospital that day... and just 1wk. after meeting Jilly, Child Protective Services were removing her from her Birth parents custody... I actually have a STEP-Family Connection, so CPS placed her into our custody... avoiding her becoming part of the system, she was just 6wks. old at the time. The original plan, was for us to care for Jilly while her Birth parents came and learned how to care for her... they did not participate, and we realized very quickly that it was time for us to consider her future. There was no question about it... we would never abandon this precious child, she would become a part of our family for good!!! We love her no differently than her 4 older brothers... one of which is in Heaven. Our family embraced her and loved her unconditionally, and our goal was to give Jilly the best and longest life possible... FULL OF LOVE AND SECURITY... and so starts our Journey with Jilly! Jilly was due for her 2nd open heart surgery at 6mo. old, the bi-directional glenn. She had a heart cath. prior, and then the surgery. Jilly had a very difficult time with recovery, at that time, a neuromuscular md. came and discussed her Low Tone issues, ultrasounded her muscles and found them to be abnormal, and explained that this condition causes children to recover slower. Jilly did not deal with the pain very well and had to be put on Phenobarb to calm her brain and get her through it. She did get through it and we went home a month later. We were ever so glad to be home and start enjoying life. Jilly had a very difficult 1st yr. with Stomach problems... we found ourselves traveling to CHOP over and over (a 4 to 5hr. drive each way)... but we did get through those times. Sometimes we really had to question Jilly's quality of life as she would retch and vomit up to 30 times per day... we just kept hoping and praying that she would outgrow this as none of the docs could make it better for her. At a yr. old, Jilly did improve a bit, and was able to enjoy alot of her life. Unfortunatly, it was short lived and the tummy troubles came back full force... we were life flighted via Jet to Philly, as she was really struggling and our local hospital could not get an IV into her fragile veins. We did get through this rough patch, and since we were already in Philadelphia it only made sence to go through with the cleft palate surgery that she was scheduled for. So in Feb., 2008 Jilly had her surgery to repair her palate. Right after the surgery she caught the adenovirus (a very nasty virus that causes all of your glands to swell)... it was not good on her digestive system and she started to loose massive amts. of weight. 2 wks. into this, it was decided that Jilly would need IV feedings and a Broviak (central line) was placed in her Left leg. Sadly, not 24hrs. later... on March 1st, 2008 Jilly suffered a Stroke to the right frontal lobe of her brain. She then went into a seizure that lasted an hour... the team of doctors were in there working very hard to keep her alive. It was said to us by the head cardiologist after the fact... that Jilly scared him, he did not think he was going to be able to keep her heart beating... BUT HE DID, and Jilly survived her 1st Stroke. A week after the Stroke, Jilly started to wake up a bit... she cried all the time and seemed like she was in pain! We were sent next door to CHOP, to The Seashore House to recover and participate in and intensive rehab. program where you would spend 6hrs./day in therapy. We spent a total of 4months in Philly, and slowly we started to see Jilly regain all that she lost. She had to start over, learning to hold her head up and make eye contact and everything you would expect of a newborn to learn. We went home, and continued with therapy there... and Jilly continued to improve monthly. Eventually, life got easier and Jilly got stronger and smarter... life seemed almost normal in fact. The next plan was to wait for the next heart surgery (the Fontan), until it was apparent that Jilly's body needed it. Looking for low oxygen levels and decreased energy, and watching her as she became bluer and bluer, due to lack of oxygen in her body. Jilly is such a fighter, it did not matter how blue she was... she just kept working towards normal development. It took time, but eventually Jilly even started to walk... It was Christmas time... 2009. We were so excited and proud of Jilly and her accomplisments! One lasting affect from her Stroke was her lack of Speech... Jilly only had a couple of words she could say verbally... but Jilly knew over 100 signs, and was very good at learning new signs daily!!! We knew, we were growing closer and closer to needing the next open heart surgery... we did not look forward to it, and yet we looked forward to what is called the Fontan Circulation Completion... it is the goal of a single ventricle CHD... to have that surgery... the 3rd and final surgery.... HOPEFULLY!!! 2010 came along, and the surgery was being scheduled... At first, the date was in January, but because of the new outbreak of swine flu... it was decided to keep Jilly away from the hospital. So again, in April, we were scheduled for the Fontan... Just prior to the surgery... Jilly was at the very best she had ever been physically and cognitivly. Her receptive skills, her ability to understand was tested as that of a 6yr old. That was a huge accomplishment with all Jilly had gone through in her short life. We are so proud of our Jilly!!! April, 2010... The 1st attempt at the Fontan. Jilly headed off to surgery, Dr. Gaynor headed of to get it done. We were waiting in the parent lounge for our 1st hourly update... when suddenly a nurse came running in and pulled us to a conference room and told us Dr. Gaynor needed to speak with us. OUR HEARTS DROPPED!!! What was wrong? Was she dying? We waited a few min. and then came Dr. Gaynor all dressed up in his OR gear... he asked us to sit, we were trembling! Then he said: do'nt worry, she is ok...... PHEW....... Then he said: BUT.... and our hearts sank again.... "But, there is a change of plans... so drastic, that I felt I needed to come tell you first"... we were glued to his eyes, wondering what this could be that would bring the surgeon out to talk with us after already opening Jilly up for surgery... Well, Jilly had a history of a bulging Aorta... we knew it was large, in fact our Cardiologist, Dr. Donner would say that it was "the size of NY city"... joking of course, but the largest he had ever seen on an echo or heart cath. Well, Dr. Gaynor got in there and saw that it was indeed large, but "larger than NY city"!!! There was no option but to replace her aorta... it had not been done on a child that small, not the entire thing replaced... but it has on adults for 30 to 40yrs. and the surgeon was confident that we could do this on Jilly too. There was NO option, of doing the Fontan, the Aorta was in the way... and he could not do both the Aorta and the Fontan because that would cause too much bleeding and she would not survive. So the only option was to do the Aorta surgery now, and come back later for the Fontan. It was clear, there was no choice... so we just said OK, and off Dr. Gaynor went to do his amazing work... guided by God of course!!! The surgery went well, and the only complication was that Jilly's tummy troubles were stirred up. We spent another 3 months in the hospital and Jilly ended up having 3 abdominal surgeries and numerous complications... but she did get through it all. A very weak, underweight child... but strong enough to fight. We went home in June, and worked on building her back up knowing that the Fontan would be attempted again before long. Jilly also required Oxygen 24hrs./day at that point... the thinking was, that she just needed that Fontan surgery to bring up her oxygen levels. Due to this, it was decided that Jilly needed to go forward and have the Fontan in 2010. We were scheduled for Octover, 2010 for the Fontan attempt... again!!! Jilly had grown nicely, and gained alot of her strength back that she had lost from last hospitalization. She even had to learn to walk all over again... but she did. So now, open heart surgery #4... The Fontan. We were so hopeful that this would be the final surgery... yes, she had 1 extra surgery, but we got through it ok. On Oct. 26 we were scheduled, we were bumped to the 27th after Dr. Gaynor had gone through a very tough day. That was ok, we wanted him nice and rested... he performed the surgery and everything went as "textbook"... wow, we finally had the Fontan. We felt like we had jumped all of the tallest hurdles and we were on our way to the finish line. Unfortunatly, this was not the case.... Jilly was loosing enormous amts. of fluid through her chest tubes, she had fluid resusitation two different days... she did seem to pick up for a couple days, then seemed to be going back down hill again. None of the docs knew why... I suspected something was wrong on that Tue. and shared it with the docs... on Wed. they agreed with me that something wasn't right... and then that Thursday... Nov. 4th, 2010... the day started with a bang, things were going down hill... Jilly's body was so cold to the touch, her color was horribly blue, her sats were dropping... she was alert at times, but others she was not. The bedside tests began... a very special intensivist started checking Jilly every 15min., feeling like something was brewing... they were looking for infections somewhere... she was sweating profusly and her body was getting colder and colder. A heart cath. was scheduled for the next am., with the feeling that there could be some issue with the heart. But she continued to decline, and then her heart function became serious/ heart failure... she was rushed off to the cath. lab, in hopes of finding something easy they could fix in there.... that was not the case... what they found, was that the new conduit that is used to hook the lower bodies blood flow to the lungs had become completly full of numerous blood clots.... she had a complete blockage, and only a couple of minute collateral vessels had formed to let little to no blood flow through. Dr. Gaynor was out of the country at this time... he had left on monday, stopping in to see us as he was headed out the door... he told Jilly to behave, and that he did not trust her and that he would be checking on her constantly... So we needed the Surgeon on-call to do the emergency surgery... THE FONTAN TAKEDOWN... As they rushed Jilly from the Cath. lab to the OR and was prepping and opening her for the surgery... the cath. doc came to explain to me what was happening... it was not good. This man puts it all out on the table... Jilly needds the Fontan Takedown and most do not survive the situation that brings them to this surgery. He explained that I needed to make a choice... either they go in and try to remove the clost and fix the Fontan Circulation... WHICH WILL ALLOW THE CLOTS TO GO ALL THROUG HER BODY AND DESTROY EVERY ORGAN... HEART/BRAIN/LUNGS/KIDNEYS/LIVER/ETC... OR... we can attempt the Fontan Takedown and hope that she survives and they can contain the clots and remove them all at once. Dr. Fuller would be our surgeon of the night, we had no time to wait for Dr. Gaynor to come home. He was fully aware, and supported these choices... it was very clear to us... we had NO choice... the FONTAN TAKEDOWN IT WAS!!! Jilly survived the situation and the surgery by the grace of God... But, after looking at the clots in the OR... it was seen that they were something that started a few days ago, most likely the Tue. when I felt something wasn't right... and it was believed that the clots appeared to tell them that she had become fully blocked 12hrs. prior to the Takedown surgery... I did not know you could look at clots and know how many hours old they are... learned something new. So, the expectancy of recovery was not good for Jilly!!! Major Brain injury was the thoughts of the entire cardiac team. In fact, later I found out that every nurse had heard... "Jilly is going to die"... thankfully I did not hear those words at that time!!! About 2 1/2 days later, Jilly was extubated... and she did not know how to breathe correctly... her chest was jumping up and down, her abdomen was see-sawing all over the place... the thoughts were that she may have a parylyzed diaphram... they wanted to intubate her again... I had that one special doc and several respiratory therapist friends who talked about c-pap and how it can be used for these situations... the docs were very hesitant... I felt for some reason, that if Jilly was intubated that she would die. Her blood gasses very worsening every 15min. and something had to be done. This special intensivist talked the other docs into trying c-pap 1st... we were given 15min. and if the blood gasses worsened, she would be intubated... 15 slow min. went by, another blood gas checked, and it had stabalized... so were given another 15min. and so on... it worked, the c-pap was controling her breathing and her blood gasses eventually improved!!! It still did not get easier though... Jilly started waking up, and she could not control any movements... her left side did not move at all, and her right side was having uncontroled movements called "CHORIA"... That is when Neuro. and the Stroke Team were called in, then Neuro-muscular docs too... It was decided that it was impossible to take Jilly to have a MRI of her brain, due to her breathing... she would have to be bagged, to go anywhere... they did do a fluroscopy of the diaphram and that was only a few min. of having to bag her... she could not breath on her own. So, we were told... based on clinical signs and symptoms... Jilly has suffered brain damage... possibly a stroke again, possibly due to hypoxia (lack of oxygen) possible damage to grey matter of brain, possibly to white matter of brain... sometimes a scan cannot even pick up these different damages like a stroke is picked up... but all in all, the treatment is the same regardless of the damage to the brain... REHABILITATION!!! We did this before, it did not make it easier to accept... in fact, it seemed harder so unfair that Jilly had already learned everything twice in her life and now again!!! And that is what was needed... a couple days later, Jilly could not use either side of her body. We were told after a EMG with the neuro-musc. docs that she may have a neuropathy...??? All we could do is start rehab. and continue c-pap for her breathing. We could not even see her face, she could not see us... the mask covered her eyes because they are not made well for the little ones... when we did try to get close, she could not focus, she could not make eye contact, she could not move her body much at all. It was horrible!!! But, Jilly overcame these things... it took months, but she has regained alot of what she lost that day... It is now, August, 2011... not quite a year... and Jilly is walking and talking and learning it all over again. Yes, somethings are different for example retaining her sign language like she used to... but, believe it or not.... some things are better!!! Odly, Jilly came out of this talking... seriously talking... new sounds, new words, and now even sentances... all new since this brain damage!!! God works in mysterious ways!!!! God has a plan for Jilly... I don't know what it is, but I do know that my job is to keep fighting WITH Jilly, until God calls her home... and I know, that absolutly NOONE on that cardiac floor thought Jilly would live another day, and if by chance she did live... they all expected her to be a "vegetable"... Thankfully, God is our Physician and he has control.... he breathed life into Jilly, that day of Nov. 4th, 2010... and I praise him for the Storms and the Miracles!!! My advice to any one traveling these CHD journey's is..... Never loose Hope, as long as they are with us... we have to keep fighting, just as our children are!!!! God has a plan for each of our children. And yes, one day he will call them Home to be with Him... but today, as long as they are still fighting.........................
WE FIGHT WITH THEM!!!
Joy Kimble, mommy to Jilly (HLHS WARRIOR/STROKE SURVIVOR)
Friday, August 5, 2011
1st blog entry in 2011
We are still here, yes it has been a while and yes Jilly suffered another STROKE... but we are ok! Jilly almost left us on Nov. 4th, 2010 but by the Grace of God... she survived! A miracle, for sure... the doctors cannot explain why or how she survived, but we can!!! God is not finished with Jilly yet, and she is fighting hard to be here and fulfill his plans!!! I hope to get back to blogging here again... bare with me as I get started on sharing more of Jilly's journey... it was a long year, 2010 and we are thankful to be resting in 2011. HEART HUGS!!!
Tuesday, August 24, 2010
"OUR STORY" for a heart story event:
Another "heart mom" is having an event where she shares other "heart family" stories, ours may be a little different in the beginning than most... but still, it is "our" story... the SHORT VERSION!
We met Jilliann (Jilly), at 5wks. old. She was in our local hospital and in need of many things... one being a loving family who could deal with her medical issues AND give her all the love that she deserved. Within a week, our family agreed that WE, were that family...
Jilly was born January 5th, 2007 with HLHS, a CLEFT PALATE, SEVERE HYPOTONIA (low muscle tone) due to neuromuscular issues, and very bad digestive issues. She was diagnosed in utero, as having the heart defect so she was born in Philadelphia. At 3 days old, Jilly had her 1st open heart surgery, she did not do well with the healing process and pain control, she also required alot of pacing to keep her heart in rythem but eventually she overcame these things. She had her 1st abdominal surgery at 3wks. old to place a g-tube for feeding and she had the nissan fundoplication (to wrap her stomach around her esophagus to prevent reflux). Jilly went home from Philadelphia at 4wks. old, but was admitted to our local hospital a few days later with severe weight loss. She was severly dehydrated, and it was determined that she most likely had not received any nutrition during this period. She was then, abandoned in our local hospital (in child protective's terms). It was then, that "our" story begins...
We met Jilly on Feb. 15th 2007... on Feb. 19th she was placed into our custody and our "LOVE" story begins. Also, our journey into the "HEART WORLD" began... one that noone can be prepared for, until they experience it. Within a week, we were headed to Philadelphia to adress the "cyanotic episodes" Jilly was having. Noone was sure, what was the cause but we knew that Jilly would desat. and brady during these episodes. In the next year, we spent a large part of Jilly's life, and ours... at CHOP. We learned that she was having reflux and retching episodes, sometimes up to 30 time/day.
Jilly had her second open heart surgery at 6mo. old. This too, was a rough time for Jilly. We learned that it is not unusual for children with neuromuscular issues to heal slower, or to not deal with pain as well. She was put on Phenobarb to calm her brain, and then things improved. It was a month stay at CHOP.
At 14mo. old, Jilly was again admitted for GI issues. She was also scheduled for her Cleft Palate surgery... the doctors went ahead with the surgery on Feb. 19th, she then caught the adnovirus which caused her to lose alot of wgt. She put put on TPN for nutruition... this required a Broviac (central line) to be placed in her leg. The next day, the line came apart and it is believed that air entered her blood stream and went to her brain... On March 1st 2008, Jilly suffered a stroke to the Right Frontal Lobe of her brain. She lost all use of her Left side. Jilly spent the next yr. regaining the use of her Left side. And on Jan. 5th, 2010 Jilly started walking at the age of 3yrs old.
On April 18th, 2010... we headed to CHOP again for yet another open heart surgery, the 3rd of her 3 planned surgeries. Once Jilly was open up by the surgeon, it was realized that the bulging Aorta that we knew she had... was much worse than anticipated! The only choice was, to replace Jilly's Aorta and postpone the Fontan completion until next year. After the surgery, Jilly developed severe GI issues yet again, and underwent several surgeries to help her... over a 10wks. period.
Today, Jilly is home... she continues to be on oxygen since her last openheart surgery. It was hoped that Jilly could wait a yr. to have her next surgery. But, it has been decided by Jilly's cardiologist and surgeon that she needs the surgery sooner. We are waiting for the dates, but the surgery is expected to take place in Oct. of this yr., just 6mo. after her last one.
We hope that this will be her 4th and final surgery, as 4 open heart surgeries before the age of 4yrs. old... seems like enough!!! Jilly continues to suffer from severe GI issues, and is fed into a J-tube going directly into her intestines.
Jilly is a fighter, a warrior, and a stroke survivor. We love her, and will continue this journey whererever it takes us. No matter what, she is our perfect little daughter!!! Thanks for reading our "story"...
See others stories at: http://www.whenlifehandsyouabrokenheart.blogspot.com/
We met Jilliann (Jilly), at 5wks. old. She was in our local hospital and in need of many things... one being a loving family who could deal with her medical issues AND give her all the love that she deserved. Within a week, our family agreed that WE, were that family...
Jilly was born January 5th, 2007 with HLHS, a CLEFT PALATE, SEVERE HYPOTONIA (low muscle tone) due to neuromuscular issues, and very bad digestive issues. She was diagnosed in utero, as having the heart defect so she was born in Philadelphia. At 3 days old, Jilly had her 1st open heart surgery, she did not do well with the healing process and pain control, she also required alot of pacing to keep her heart in rythem but eventually she overcame these things. She had her 1st abdominal surgery at 3wks. old to place a g-tube for feeding and she had the nissan fundoplication (to wrap her stomach around her esophagus to prevent reflux). Jilly went home from Philadelphia at 4wks. old, but was admitted to our local hospital a few days later with severe weight loss. She was severly dehydrated, and it was determined that she most likely had not received any nutrition during this period. She was then, abandoned in our local hospital (in child protective's terms). It was then, that "our" story begins...
We met Jilly on Feb. 15th 2007... on Feb. 19th she was placed into our custody and our "LOVE" story begins. Also, our journey into the "HEART WORLD" began... one that noone can be prepared for, until they experience it. Within a week, we were headed to Philadelphia to adress the "cyanotic episodes" Jilly was having. Noone was sure, what was the cause but we knew that Jilly would desat. and brady during these episodes. In the next year, we spent a large part of Jilly's life, and ours... at CHOP. We learned that she was having reflux and retching episodes, sometimes up to 30 time/day.
Jilly had her second open heart surgery at 6mo. old. This too, was a rough time for Jilly. We learned that it is not unusual for children with neuromuscular issues to heal slower, or to not deal with pain as well. She was put on Phenobarb to calm her brain, and then things improved. It was a month stay at CHOP.
At 14mo. old, Jilly was again admitted for GI issues. She was also scheduled for her Cleft Palate surgery... the doctors went ahead with the surgery on Feb. 19th, she then caught the adnovirus which caused her to lose alot of wgt. She put put on TPN for nutruition... this required a Broviac (central line) to be placed in her leg. The next day, the line came apart and it is believed that air entered her blood stream and went to her brain... On March 1st 2008, Jilly suffered a stroke to the Right Frontal Lobe of her brain. She lost all use of her Left side. Jilly spent the next yr. regaining the use of her Left side. And on Jan. 5th, 2010 Jilly started walking at the age of 3yrs old.
On April 18th, 2010... we headed to CHOP again for yet another open heart surgery, the 3rd of her 3 planned surgeries. Once Jilly was open up by the surgeon, it was realized that the bulging Aorta that we knew she had... was much worse than anticipated! The only choice was, to replace Jilly's Aorta and postpone the Fontan completion until next year. After the surgery, Jilly developed severe GI issues yet again, and underwent several surgeries to help her... over a 10wks. period.
Today, Jilly is home... she continues to be on oxygen since her last openheart surgery. It was hoped that Jilly could wait a yr. to have her next surgery. But, it has been decided by Jilly's cardiologist and surgeon that she needs the surgery sooner. We are waiting for the dates, but the surgery is expected to take place in Oct. of this yr., just 6mo. after her last one.
We hope that this will be her 4th and final surgery, as 4 open heart surgeries before the age of 4yrs. old... seems like enough!!! Jilly continues to suffer from severe GI issues, and is fed into a J-tube going directly into her intestines.
Jilly is a fighter, a warrior, and a stroke survivor. We love her, and will continue this journey whererever it takes us. No matter what, she is our perfect little daughter!!! Thanks for reading our "story"...
See others stories at: http://www.whenlifehandsyouabrokenheart.blogspot.com/
Wednesday, May 26, 2010
Sildenafil/Viagra use in children with HLHS
Improving Blood Flow After Surgery to Treat Hypoplastic Left Heart Syndrome,
Children’s Hospital researchers are close to completing a study on the use of a medication called Sildenafil as a
complement to a three-stage surgical intervention to treat complex congenital heart disease, such as
hypoplastic left heart syndrome (HLHS) — a disease in which babies are born with an underdeveloped left side of
their heart. HLHS, and other forms of complex single-ventricle heart disease, are universally fatal without surgery.
To correct this defect, a series of three open-heart surgical procedures — pioneered at Children’s Hospital of
Philadelphia and now utilized worldwide — are performed to properly direct blood flow to the lungs and body.
While these procedures are lifesaving, survivors typically have a diminished capacity to exercise and may develop
secondary problems in other organs, such as the lungs and liver. Truly long-term outcomes are unknown at this
time.
David Goldberg, M.D., along with several other Cardiac Center physician-scientists in a group led by Jack Rychik,
M.D., is completing a ground-breaking study to improve on these outcomes. Sildenafil, which is currently approved
by the Food and Drug Administration to treat high blood pressure in the lungs in adults, is being studied to assess its
impact in this complex congenital heart defect. The Cardiac Center staff expects that treatment with Sildenafil
will improve the exercise ability and overall quality of life in patients with HLHS and other forms of single-ventricle
heart disease.
A significant gift from Mr. and Mrs. Mark Harrington has given Goldberg and collaborators the chance to test this
hypothesis in a pilot study here at the Cardiac Center, the first of its kind. Should preliminary information suggest
that this new approach to treatment is beneficial, it would lay the groundwork for further large-scale,
multi-institutional research. HLHS and other forms of single-ventricle heart disease affect nearly 1,000 children
each year, and there are an estimated 20,000 children and young adults who might benefit from this new approach.
Children’s Hospital researchers are close to completing a study on the use of a medication called Sildenafil as a
complement to a three-stage surgical intervention to treat complex congenital heart disease, such as
hypoplastic left heart syndrome (HLHS) — a disease in which babies are born with an underdeveloped left side of
their heart. HLHS, and other forms of complex single-ventricle heart disease, are universally fatal without surgery.
To correct this defect, a series of three open-heart surgical procedures — pioneered at Children’s Hospital of
Philadelphia and now utilized worldwide — are performed to properly direct blood flow to the lungs and body.
While these procedures are lifesaving, survivors typically have a diminished capacity to exercise and may develop
secondary problems in other organs, such as the lungs and liver. Truly long-term outcomes are unknown at this
time.
David Goldberg, M.D., along with several other Cardiac Center physician-scientists in a group led by Jack Rychik,
M.D., is completing a ground-breaking study to improve on these outcomes. Sildenafil, which is currently approved
by the Food and Drug Administration to treat high blood pressure in the lungs in adults, is being studied to assess its
impact in this complex congenital heart defect. The Cardiac Center staff expects that treatment with Sildenafil
will improve the exercise ability and overall quality of life in patients with HLHS and other forms of single-ventricle
heart disease.
A significant gift from Mr. and Mrs. Mark Harrington has given Goldberg and collaborators the chance to test this
hypothesis in a pilot study here at the Cardiac Center, the first of its kind. Should preliminary information suggest
that this new approach to treatment is beneficial, it would lay the groundwork for further large-scale,
multi-institutional research. HLHS and other forms of single-ventricle heart disease affect nearly 1,000 children
each year, and there are an estimated 20,000 children and young adults who might benefit from this new approach.
Friday, March 26, 2010
Speech issues:
I am reading a book called THE LATE TALKER, I have not gotten too far into the book yet... but I have learned a lot about Speech Disorders. Unfortunately, I am beginning to believe that Jilly was dealing with a Speech Disorder, long before her Stroke...
Jilly was born with a cleft palate, so she qualified for speech therapy through Early Intervention... immediately. She started therapy at a very young age, but did not progress very well, in her first 14mo. prior to her stroke.
Jilly was born with severe hypotonia, BUT, due to her multiple birth defects... mainly her heart defect HLHS, and her Cleft Palate, ALONG with the fact that Jilly was born in, an out-of-state hospital to biological parents who did not participate, neglected her, did not forward her medical records to their home town doctors, and basically abandoned her... the diagnosis of severe hypotonia did not follow her to our local town, where I first met Jilliann at 5wks. old.
When I met Jilly, the only diagnosis's that we had, were the HLHS and CLEFT PALATE... I also noticed that she had a recessed jaw, and inquired... I was told, that she obviously has an issue with the jaw called Micrognathia, meaning shortened jaw bones. I was told that this is something that some are born with, and that the jaw bones are the last bones in the face to fully grow... therefore, it is not until the age of about 18yrs. old, that a plastic surgeon would consider fixing and extending the jaw bones, if desired. Although Jilliann's micrognathia was quite noticable, I was told that there were more severe cases, that cause difficulty with breathing... and those cases sometimes require surgery or traching to deal with the breathing issues... but that it was not suspected that Jilliann's was this severe. Jilliann did have rather low oxygen levels, even for a HLHS baby... it was discussed that possibly, the low oxygen levels were somewhat effected by the Micrognathia, but not likely. Jilliann has also, always struggled with lower oxygen levels while laying down or sleeping, some babies with Micrognathia have issues with their tongue being positioned too far back in their throat, and, as they fall asleep and the tongue relaxes, it can fall back in the throat and partially block the airway, but that too... was questioned, but not suspected to be the cause, of her low oxygen levels... it was thought more so, to be a heart issue. I was told that she was just one of those babies, that was effected positionally... when it came to her heart function and blood flow to the pulmonary artery on the left side (which is highly compressed by a severely bulging Aorta... due to the stretching of the Aorta and Gortex patch, that was used to enlarge her severally underdeveloped Aorta). I also questioned a syndrome that I was aware of, Pierre Robin Syndrome... which consists of the Cleft Palate AND the Micrognathia, but I never got a definitive answer on whether Jilliann was considered to have this syndrome.
I spent the rest of her first year, on a quest to get more information, on what exactly was noticed/diagnosed, at birth... after much searching, along with the fact that a neurologist was called in, during her 6mo. heart surgery recovery... due to the fact that Jilly was not recovering well, not responding to pain meds. or sedation, and we were not able to calm her for several weeks after the surgery... much beyond the normal recovery period. It was then, that I was asked if Jilliann was diagnosed at birth with Hypotonia. Not being her birth parent, and not knowing if there was any diagnosis of this, at birth... we started searching for her birth records and sure enough... her very first exam after birth, stated: FLOPPY BABY. This term, is used for babies lacking the normal muscle tone. While talking with the neurologist, and discussing what we had noticed since the time that we had known Jilliann... it became a definite diagnosis that Jilliann was in fact, born with severe Hypotonia... these children are very floppy, as if you are carrying a wet noodle/a rag doll/ a sleeping child who does not resist the pull of gravity on their body. I had no idea, what this diagnosis meant... the Neurologist also did an ultrasound of Jilly's muscles... it was confirmed that Jilly had abnormal muscle mass. It was explained to me, to imagine the muscle as many many little strings all tightly tied together... leaving very little gaping... hypotonia is caused by muscles that do not have this tight weave of strings.... there are gaps, and therefore the muscles are not as dense and not as effective at their job. One thing I was not told, is that this does not mean that the muscle, necessarily is weak. Tone and Strength are two different things... I did not know this though.
So, due to the hypotonia (low tone)... I was told that babies do not recover as well after surgeries... it was recommended, to put Jilly on something to calm her brain, and that would help her recover better. Jilliann was put on Phenobarbitol, for this purpose... and it did seem to do the trick. Eventually, Jilly was able to calm down, relax, and sleep... and that was when her body was able to heal and recover. Once things improved, she was slowly weaned off of the Phenobarb., and once finished... she was able to go home. It was a very long month of hospitalization, recovering from her second open heart surgery. I also, found in her hospital records, that she experienced the same type of delayed recovery in the first 4wks. of life... now explained by this "HYPOTONIA".
What I am learning from this book I am reading, is that Hypotonia can play a big part in Speech Disorders... it was assumed that Jilly's "SPEECH DELAY" in her first year of life, was only due to her Cleft Palate... as no one really knew or understood the complexity of the diagnosis: Hypotonia. I am also learning from this book, that studies have proven that Speech Disorders can be hereditary. I am aware that one of Jilly's birth parents, was diagnosed with significant learning disorders in school, and received special education services, until dropping out of high school... One thing, I want to clarify is: Speech Disorders, do not mean that the person is cognitively delayed... in fact, it has been proven recently... that a large amount of people diagnosed with Speech Disorders... are advanced in their receptive abilities, meaning that they completely understand what is being said to them, and know exactly what they want to say... they just cannot verbalize, their knowledge. Unfortunately, it is common to be misdiagnosed as cognitively impaired... even to the point of being labeled as "retarded". And some, with Speech disorders have been diagnosed as Autistic... only because the child was not able to express himself verbally.
I have also noticed, that some of Jilliann's biological relatives, have very noticeable speech "issues", but I do not know their diagnosis's. What I am trying to express... is that there are many reasons, that a child does not talk... sadly, a lot of these issues are overlooked by doctors. What may be a SPEECH DISORDER, could just be diagnosed as a SPEECH DELAY; and there seems to be a major difference between the two! This book, is explaining those differences... in hopes of educating the reader... who commonly is the mother, that spends the most time with the child and may notice signs of a "DISORDER"... that possibly, no one else may notice.
I think that a big problem in getting the correct diagnosis... is that not everyone has ALL the pieces of the puzzle. It is a result of having TWO, wonderful speech therapists throughout Jilliann's life... and reading this book; that I feel as though, I have just realized how all of the pieces of Jilliann's puzzle... fit together.
The first two chapters of this book, were VERY depressing to read... they focused on the results, of how horribly the child will be effected by undiagnosed SPEECH DISORDERS. It didn't really even say "undiagnosed"... it just said many statistics, of how SPEECH DISORDERS can ruin a child's life... and that the results would be an adult that is not able to function in society or have friends. It even went on to say... that the likelihood of the child growing up and ending up in prison or worse yet... committing suicide is what to expect. I felt a bit angry, thinking that they were saying that there is no hope for a child with a true SPEECH DISORDER. But, I am willing to accept, that what the authors are trying to bring out... is the importance of a correct diagnosis.
So many parents, are not willing to accept when their child is 1,2,or 3 yrs. old... that they may have a issue, and that they may need some speech therapy. No parent, wishes to have their child diagnosed with a problem/delay/ or worse yet... a DISORDER!!! We do not want our child, to start out life... with a LABEL!!! Therefore, many parents who see signs of trouble... will not search out help. Or, they do inquire... and are told by others including doctors; that their child will catch up, and not to worry about it.
The book is trying to reach those people that may be in denial. Basically, it is trying to scare people into taking action. I personally, felt that it was a bit brutal... and for someone reading the book, who is already aware that there is a definite problem with severe speech delay... it was almost a bit hurtful, making the parent feel as there is "no hope" for a child who truly has a SPEECH DISORDER; to ever have a successful life. If, I had not already accepted, that Jilly has a serious issue with her speech... I do believe, that I would of quit reading the book after the first two chapters... and thrown the book away! BUT, because I have accepted that Jilly is going to have a difficult road, when it comes to speech.... I felt that I owed it to her, to continue reading this book... in hopes to educate myself in any way possible... if just one sentence in this book, can help Jilly... then I am willing to read it!!! Chapter two ends, by saying: "There is nothing to be lost and everything to be gained from early therapy. Perhaps your child is a late bloomer and will catch up with his peers. On the other hand, he may not have a speech delay but a speech disorder, and by obtaining therapy you will have gained a vital time advantage. You need to be prepared if this is the situation. In the next chapter, therefore, we outline the specific speech disorders. We tell you what is known about their origins and how to identify them. As a parent you are more familiar with your child than anyone and need to be armed with this information so that, if necessary, you can take appropriate action."
That being said... I did continue reading the book and have now completed chapter 3. It was this chapter... that I have learned the most from! I am glad, that I went on... I do think this book has a lot to teach me... and I hope, that it not only helps me come up with the correct diagnosis for my little girl... but will also give me great HOPE, of how early therapy/treatment WILL PREVENT the awful outcomes that chapter 2 spoke of !!!
I will have to stop here for tonight... but stay tuned, as I read through this book! I am hoping, that by educating myself on SPEECH ISSUES, I will be able to educate others... I could not be the only person looking for answers, on diagnosis and treatment. And, I will not be the last... YOU may be just starting out, maybe with your newborn baby who has yet to create their pieces of the puzzle! Knowing from the start, what I am learning 3yrs. down the road... may prevent the questions that I have struggled to answer! Nothing would make me happier, than to help someone know what to look for as it is happening... know what questions to ask... and know where to find the answers to those questions!!!
Jilly was born with a cleft palate, so she qualified for speech therapy through Early Intervention... immediately. She started therapy at a very young age, but did not progress very well, in her first 14mo. prior to her stroke.
Jilly was born with severe hypotonia, BUT, due to her multiple birth defects... mainly her heart defect HLHS, and her Cleft Palate, ALONG with the fact that Jilly was born in, an out-of-state hospital to biological parents who did not participate, neglected her, did not forward her medical records to their home town doctors, and basically abandoned her... the diagnosis of severe hypotonia did not follow her to our local town, where I first met Jilliann at 5wks. old.
When I met Jilly, the only diagnosis's that we had, were the HLHS and CLEFT PALATE... I also noticed that she had a recessed jaw, and inquired... I was told, that she obviously has an issue with the jaw called Micrognathia, meaning shortened jaw bones. I was told that this is something that some are born with, and that the jaw bones are the last bones in the face to fully grow... therefore, it is not until the age of about 18yrs. old, that a plastic surgeon would consider fixing and extending the jaw bones, if desired. Although Jilliann's micrognathia was quite noticable, I was told that there were more severe cases, that cause difficulty with breathing... and those cases sometimes require surgery or traching to deal with the breathing issues... but that it was not suspected that Jilliann's was this severe. Jilliann did have rather low oxygen levels, even for a HLHS baby... it was discussed that possibly, the low oxygen levels were somewhat effected by the Micrognathia, but not likely. Jilliann has also, always struggled with lower oxygen levels while laying down or sleeping, some babies with Micrognathia have issues with their tongue being positioned too far back in their throat, and, as they fall asleep and the tongue relaxes, it can fall back in the throat and partially block the airway, but that too... was questioned, but not suspected to be the cause, of her low oxygen levels... it was thought more so, to be a heart issue. I was told that she was just one of those babies, that was effected positionally... when it came to her heart function and blood flow to the pulmonary artery on the left side (which is highly compressed by a severely bulging Aorta... due to the stretching of the Aorta and Gortex patch, that was used to enlarge her severally underdeveloped Aorta). I also questioned a syndrome that I was aware of, Pierre Robin Syndrome... which consists of the Cleft Palate AND the Micrognathia, but I never got a definitive answer on whether Jilliann was considered to have this syndrome.
I spent the rest of her first year, on a quest to get more information, on what exactly was noticed/diagnosed, at birth... after much searching, along with the fact that a neurologist was called in, during her 6mo. heart surgery recovery... due to the fact that Jilly was not recovering well, not responding to pain meds. or sedation, and we were not able to calm her for several weeks after the surgery... much beyond the normal recovery period. It was then, that I was asked if Jilliann was diagnosed at birth with Hypotonia. Not being her birth parent, and not knowing if there was any diagnosis of this, at birth... we started searching for her birth records and sure enough... her very first exam after birth, stated: FLOPPY BABY. This term, is used for babies lacking the normal muscle tone. While talking with the neurologist, and discussing what we had noticed since the time that we had known Jilliann... it became a definite diagnosis that Jilliann was in fact, born with severe Hypotonia... these children are very floppy, as if you are carrying a wet noodle/a rag doll/ a sleeping child who does not resist the pull of gravity on their body. I had no idea, what this diagnosis meant... the Neurologist also did an ultrasound of Jilly's muscles... it was confirmed that Jilly had abnormal muscle mass. It was explained to me, to imagine the muscle as many many little strings all tightly tied together... leaving very little gaping... hypotonia is caused by muscles that do not have this tight weave of strings.... there are gaps, and therefore the muscles are not as dense and not as effective at their job. One thing I was not told, is that this does not mean that the muscle, necessarily is weak. Tone and Strength are two different things... I did not know this though.
So, due to the hypotonia (low tone)... I was told that babies do not recover as well after surgeries... it was recommended, to put Jilly on something to calm her brain, and that would help her recover better. Jilliann was put on Phenobarbitol, for this purpose... and it did seem to do the trick. Eventually, Jilly was able to calm down, relax, and sleep... and that was when her body was able to heal and recover. Once things improved, she was slowly weaned off of the Phenobarb., and once finished... she was able to go home. It was a very long month of hospitalization, recovering from her second open heart surgery. I also, found in her hospital records, that she experienced the same type of delayed recovery in the first 4wks. of life... now explained by this "HYPOTONIA".
What I am learning from this book I am reading, is that Hypotonia can play a big part in Speech Disorders... it was assumed that Jilly's "SPEECH DELAY" in her first year of life, was only due to her Cleft Palate... as no one really knew or understood the complexity of the diagnosis: Hypotonia. I am also learning from this book, that studies have proven that Speech Disorders can be hereditary. I am aware that one of Jilly's birth parents, was diagnosed with significant learning disorders in school, and received special education services, until dropping out of high school... One thing, I want to clarify is: Speech Disorders, do not mean that the person is cognitively delayed... in fact, it has been proven recently... that a large amount of people diagnosed with Speech Disorders... are advanced in their receptive abilities, meaning that they completely understand what is being said to them, and know exactly what they want to say... they just cannot verbalize, their knowledge. Unfortunately, it is common to be misdiagnosed as cognitively impaired... even to the point of being labeled as "retarded". And some, with Speech disorders have been diagnosed as Autistic... only because the child was not able to express himself verbally.
I have also noticed, that some of Jilliann's biological relatives, have very noticeable speech "issues", but I do not know their diagnosis's. What I am trying to express... is that there are many reasons, that a child does not talk... sadly, a lot of these issues are overlooked by doctors. What may be a SPEECH DISORDER, could just be diagnosed as a SPEECH DELAY; and there seems to be a major difference between the two! This book, is explaining those differences... in hopes of educating the reader... who commonly is the mother, that spends the most time with the child and may notice signs of a "DISORDER"... that possibly, no one else may notice.
I think that a big problem in getting the correct diagnosis... is that not everyone has ALL the pieces of the puzzle. It is a result of having TWO, wonderful speech therapists throughout Jilliann's life... and reading this book; that I feel as though, I have just realized how all of the pieces of Jilliann's puzzle... fit together.
The first two chapters of this book, were VERY depressing to read... they focused on the results, of how horribly the child will be effected by undiagnosed SPEECH DISORDERS. It didn't really even say "undiagnosed"... it just said many statistics, of how SPEECH DISORDERS can ruin a child's life... and that the results would be an adult that is not able to function in society or have friends. It even went on to say... that the likelihood of the child growing up and ending up in prison or worse yet... committing suicide is what to expect. I felt a bit angry, thinking that they were saying that there is no hope for a child with a true SPEECH DISORDER. But, I am willing to accept, that what the authors are trying to bring out... is the importance of a correct diagnosis.
So many parents, are not willing to accept when their child is 1,2,or 3 yrs. old... that they may have a issue, and that they may need some speech therapy. No parent, wishes to have their child diagnosed with a problem/delay/ or worse yet... a DISORDER!!! We do not want our child, to start out life... with a LABEL!!! Therefore, many parents who see signs of trouble... will not search out help. Or, they do inquire... and are told by others including doctors; that their child will catch up, and not to worry about it.
The book is trying to reach those people that may be in denial. Basically, it is trying to scare people into taking action. I personally, felt that it was a bit brutal... and for someone reading the book, who is already aware that there is a definite problem with severe speech delay... it was almost a bit hurtful, making the parent feel as there is "no hope" for a child who truly has a SPEECH DISORDER; to ever have a successful life. If, I had not already accepted, that Jilly has a serious issue with her speech... I do believe, that I would of quit reading the book after the first two chapters... and thrown the book away! BUT, because I have accepted that Jilly is going to have a difficult road, when it comes to speech.... I felt that I owed it to her, to continue reading this book... in hopes to educate myself in any way possible... if just one sentence in this book, can help Jilly... then I am willing to read it!!! Chapter two ends, by saying: "There is nothing to be lost and everything to be gained from early therapy. Perhaps your child is a late bloomer and will catch up with his peers. On the other hand, he may not have a speech delay but a speech disorder, and by obtaining therapy you will have gained a vital time advantage. You need to be prepared if this is the situation. In the next chapter, therefore, we outline the specific speech disorders. We tell you what is known about their origins and how to identify them. As a parent you are more familiar with your child than anyone and need to be armed with this information so that, if necessary, you can take appropriate action."
That being said... I did continue reading the book and have now completed chapter 3. It was this chapter... that I have learned the most from! I am glad, that I went on... I do think this book has a lot to teach me... and I hope, that it not only helps me come up with the correct diagnosis for my little girl... but will also give me great HOPE, of how early therapy/treatment WILL PREVENT the awful outcomes that chapter 2 spoke of !!!
I will have to stop here for tonight... but stay tuned, as I read through this book! I am hoping, that by educating myself on SPEECH ISSUES, I will be able to educate others... I could not be the only person looking for answers, on diagnosis and treatment. And, I will not be the last... YOU may be just starting out, maybe with your newborn baby who has yet to create their pieces of the puzzle! Knowing from the start, what I am learning 3yrs. down the road... may prevent the questions that I have struggled to answer! Nothing would make me happier, than to help someone know what to look for as it is happening... know what questions to ask... and know where to find the answers to those questions!!!
Monday, March 22, 2010
Wednesday, March 10, 2010
A story of two very special ROSES...
http://fromawriterskitchen.blogspot.com/2010/03/working-title-hearts-and-roses-blog.html
A very dear facebook friend, and fellow blogger suggested something to me... she said: why don't we reach out to other communities, to spread awareness of the issues of CHD'S AND STROKES? I thought that sounded like a good idea, so I turned around and said... will you do a story on your blog about these issues... well, she gladly said "yes", I feel very honored that our friend Bonnie, has now spread awareness to others, who may of never heard of these issues... and she included Jilly and a precious little "heart friend", Izzy in her story... including pics! Thank You Bonnie!!!
From A Writer's Kitchen
Monday, March 8, 2010
Hearts and Roses
roy 1960
They named her Elizabeth Rose. She was exquisite. My ten-year-old self was so jealous of my best friend's new baby sister. I was also jealous of the large (by a child's measurement) play house in her backyard. There was a tiny front porch and window boxes and a rose bush planted on each side of the three steps leading up to the porch. The roses were pink. Mr. and Mrs. M. planned to have a large family and built that two-room playhouse to fuel the imagination of their children. There was an easel for drawing and lots of pencils and crayons. There was modeling clay refreshed every few weeks. And, what I liked most, a reading corner with two comfortable chairs.
The first time I saw Elizabeth Rose, she was wearing a sheer white dress (no onesies back then) and lying on a pale pink baby afghan. There were matching pink booties on her tiny feet. She had a lot of very dark hair. I wanted to hold her. Mrs. M. simply said "no, she's sick". She didn't look sick to me.
Elizabeth Rose never played in that wonderful little retreat. She died when she was not quite a month old. She was born with a heart defect. My mother told me, years later, that the doctors really didn't know how to treat Elizabeth's heart so they sent her home to die peacefully.
That was forty years ago. Today heart defects are still the most common birth defects. In the United States, approximately 1 out of 100 infants are born with heart defects every year. In most cases, scientists still do not know what causes an infant's heart to develop abnormally.
There are two little "roses" that have recently blossomed in my garden. They are:
Jillian Rose (Silly Jilly)Jilly is three years old. She's perfect in every way except for her heart. Jilly was born with a complex congenital heart defect (CHD) and suffered a stroke when she was fourteen months old.AND
McKenzie Rose (Izzy)
Izzy just turned two. Look at that face. It's the face of a toddler about to get into something that's probably a "no-no". Typical two-year old? Yes, in every way except for her heart. Izzy was born with CHD and Tetralogy of Fallot.
One never knows when these problems might strike very close to home. And, one of these "Roses" might grow up to be the scientist that discovers the cause. One might grow up to discover the cure. Regardless of what they do in the future, they most certainly deserve to grow up.
CHD awareness is very important for prospective parents because the sooner a CHD is discovered, the greater the chance of survival. While around 1% of all babies have CHDs, routine testing is still not done and babies are lost. If all new parents asked for a painless test called a pulse oximetry for their newborns, more CHDs would be caught and fewer babies lost. The pulse oximetry test doesn't actually detect the CHD but does lead to further testing (echocardiograms, heart ultrasounds, etc.).
Approximately twice as many children die from CHDs each year than from all childhood cancers combined, yet funding for pediatric cancer research is five times greater. All of this research needs to be generously funded and CHD research funds need to be greatly increased. That research is what will, hopefully, allow these precious little "Roses" to thrive, bloom and live to adulthood.
I like to keep my posts light and happy. However, I'm also interested in how my garden grows. I want to keep these little "Roses" growing and thriving for years to come. I'm hoping that awareness and research will lead to a whole garden of healthy little hearts!
Thankfully, most parents only have to rely on their family and friends for support in raising their children. Parents of chronically ill children find they need a much wider support system.
Please help me get this information out. Until recently, I had very little knowledge of the severity and frequency of CHDs. If my post helps just one family with an early diagnosis, I will be very grateful.
Support for Children's Heart Foundation is crucial to research into CHDs.
Support the Ronald McDonald House. It provides shelter to many of these children and their families. If there's one in your neighborhood, volunteer.
I'm told that most blood donations in the U.S. go to heart patients.
The March of Dimes also supports research into CHDs.
For more information, visit www.childrensheartfoundation.org
From congenital heart disease to childhood cancers to seizure disorders, research is ongoing and in many cases, seriously underfunded.
And, I'd be remiss in not pointing out that many of these parents continually face the insurance industry and what they will and will not cover.
A very dear facebook friend, and fellow blogger suggested something to me... she said: why don't we reach out to other communities, to spread awareness of the issues of CHD'S AND STROKES? I thought that sounded like a good idea, so I turned around and said... will you do a story on your blog about these issues... well, she gladly said "yes", I feel very honored that our friend Bonnie, has now spread awareness to others, who may of never heard of these issues... and she included Jilly and a precious little "heart friend", Izzy in her story... including pics! Thank You Bonnie!!!
From A Writer's Kitchen
Monday, March 8, 2010
Hearts and Roses
roy 1960
They named her Elizabeth Rose. She was exquisite. My ten-year-old self was so jealous of my best friend's new baby sister. I was also jealous of the large (by a child's measurement) play house in her backyard. There was a tiny front porch and window boxes and a rose bush planted on each side of the three steps leading up to the porch. The roses were pink. Mr. and Mrs. M. planned to have a large family and built that two-room playhouse to fuel the imagination of their children. There was an easel for drawing and lots of pencils and crayons. There was modeling clay refreshed every few weeks. And, what I liked most, a reading corner with two comfortable chairs.
The first time I saw Elizabeth Rose, she was wearing a sheer white dress (no onesies back then) and lying on a pale pink baby afghan. There were matching pink booties on her tiny feet. She had a lot of very dark hair. I wanted to hold her. Mrs. M. simply said "no, she's sick". She didn't look sick to me.
Elizabeth Rose never played in that wonderful little retreat. She died when she was not quite a month old. She was born with a heart defect. My mother told me, years later, that the doctors really didn't know how to treat Elizabeth's heart so they sent her home to die peacefully.
That was forty years ago. Today heart defects are still the most common birth defects. In the United States, approximately 1 out of 100 infants are born with heart defects every year. In most cases, scientists still do not know what causes an infant's heart to develop abnormally.
There are two little "roses" that have recently blossomed in my garden. They are:
Jillian Rose (Silly Jilly)Jilly is three years old. She's perfect in every way except for her heart. Jilly was born with a complex congenital heart defect (CHD) and suffered a stroke when she was fourteen months old.AND
McKenzie Rose (Izzy)
Izzy just turned two. Look at that face. It's the face of a toddler about to get into something that's probably a "no-no". Typical two-year old? Yes, in every way except for her heart. Izzy was born with CHD and Tetralogy of Fallot.
One never knows when these problems might strike very close to home. And, one of these "Roses" might grow up to be the scientist that discovers the cause. One might grow up to discover the cure. Regardless of what they do in the future, they most certainly deserve to grow up.
CHD awareness is very important for prospective parents because the sooner a CHD is discovered, the greater the chance of survival. While around 1% of all babies have CHDs, routine testing is still not done and babies are lost. If all new parents asked for a painless test called a pulse oximetry for their newborns, more CHDs would be caught and fewer babies lost. The pulse oximetry test doesn't actually detect the CHD but does lead to further testing (echocardiograms, heart ultrasounds, etc.).
Approximately twice as many children die from CHDs each year than from all childhood cancers combined, yet funding for pediatric cancer research is five times greater. All of this research needs to be generously funded and CHD research funds need to be greatly increased. That research is what will, hopefully, allow these precious little "Roses" to thrive, bloom and live to adulthood.
I like to keep my posts light and happy. However, I'm also interested in how my garden grows. I want to keep these little "Roses" growing and thriving for years to come. I'm hoping that awareness and research will lead to a whole garden of healthy little hearts!
Thankfully, most parents only have to rely on their family and friends for support in raising their children. Parents of chronically ill children find they need a much wider support system.
Please help me get this information out. Until recently, I had very little knowledge of the severity and frequency of CHDs. If my post helps just one family with an early diagnosis, I will be very grateful.
Support for Children's Heart Foundation is crucial to research into CHDs.
Support the Ronald McDonald House. It provides shelter to many of these children and their families. If there's one in your neighborhood, volunteer.
I'm told that most blood donations in the U.S. go to heart patients.
The March of Dimes also supports research into CHDs.
For more information, visit www.childrensheartfoundation.org
From congenital heart disease to childhood cancers to seizure disorders, research is ongoing and in many cases, seriously underfunded.
And, I'd be remiss in not pointing out that many of these parents continually face the insurance industry and what they will and will not cover.
Sunday, March 7, 2010
Should pics of our precious childrens scars/surgeries be posted for all to see???
I just read a very interesting posting, from an adult CHD'er. It was received by others, in many different ways... this is my thoughts on it:
Should we be posting pics of our children's scars and surgeries where EVERYONE can see them? Many adult CHD'ers are saying "NO"! The thought behind that is... our children will grow up to be hurt by what we thought was innocent. We are so proud of our children, we want what is best for them... and we by no means, EVER WANT TO CAUSE THEM PAIN OR GRIEF!!! It never crossed my mind, being that I did not grow up with computers... that when our children are older, friends or enemies will be able to access these things. And potential employers will be able to also. It is so sad, that we have to worry about these things... but obviously, we do! Adult CHD'ers are having trouble getting jobs, and even worse... getting medical insurance. That is so sad for me to think of... after all, we view our children as heroes... why wouldn't the rest of the world view them, the same way? I would want to think, that NO employer... would decide NOT to hire my child... because they see them as a liability, due to their heart defect!!! But, it seems that these are issues that our kids will grow up to experience. Oh, if I could change the world!!! But I can't... all I can do, is give my child the tools to survive in this world!
I myself, grew up with a horrible self image... I never weighed 100lbs. till I was in 10th grade, but... I thought I was fat! I was popular, but I never thought so! I always had boyfriends, but I felt unwanted! So, if I felt this bad as a girl growing up... I have to take these issues about my child seriously! After all, I will never know what she feels like to have those scars in the middle of her chest! I will never know what it feels like to put a bathing suit on or a prom dress... and be ashamed of those scars. To me, they are so beautiful... She is so beautiful!!! But what will she feel like? Who better, to get those answers from... than someone who truely knows?
I will have to think very hard, about the words of this adult CHD'er! I will have to learn more about the computer and if I can post things now, but be sure to never give them to the hands of someone who will abuse them. Can I post a movie to youtube now, erase it before she grows up... and not worry about it? I do not know that answer! If I write her name, somewhere on the web... can anyone google it and find it 10, 20 yrs. from now? I do not know this either?
I am talking about this, so that others in my shoes... who have never thought about these things until today... will have a chance to think about it now, and come up with their own best answers. I do not know, what the right answers are... all I know, is that it breaks my heart sometimes.... to think of how hard my Jilly's life will be someday. And I do not mean the physical limitations, I mean the mental ones. I will teach my daughter to be proud of herself, but you can not control your child's emotions! Yes, you can help them to grow up with a possitive self image... but that does not mean that others are not going to hurt our children with their horrible teasing, or hurt them as adults by refusing them a job based on their health issues. No, it is not legal... but really, will our children be able to prove that it is happening? No, not unless they meet some coward who openly tells them, this is why they are not hiring them... most cowards are not brave enough to do that!
So, from this day forward... I will try to figure out, what is best for my child! I want to give her every opportunity possible! And I do not want to hurt her!!!
Should we be posting pics of our children's scars and surgeries where EVERYONE can see them? Many adult CHD'ers are saying "NO"! The thought behind that is... our children will grow up to be hurt by what we thought was innocent. We are so proud of our children, we want what is best for them... and we by no means, EVER WANT TO CAUSE THEM PAIN OR GRIEF!!! It never crossed my mind, being that I did not grow up with computers... that when our children are older, friends or enemies will be able to access these things. And potential employers will be able to also. It is so sad, that we have to worry about these things... but obviously, we do! Adult CHD'ers are having trouble getting jobs, and even worse... getting medical insurance. That is so sad for me to think of... after all, we view our children as heroes... why wouldn't the rest of the world view them, the same way? I would want to think, that NO employer... would decide NOT to hire my child... because they see them as a liability, due to their heart defect!!! But, it seems that these are issues that our kids will grow up to experience. Oh, if I could change the world!!! But I can't... all I can do, is give my child the tools to survive in this world!
I myself, grew up with a horrible self image... I never weighed 100lbs. till I was in 10th grade, but... I thought I was fat! I was popular, but I never thought so! I always had boyfriends, but I felt unwanted! So, if I felt this bad as a girl growing up... I have to take these issues about my child seriously! After all, I will never know what she feels like to have those scars in the middle of her chest! I will never know what it feels like to put a bathing suit on or a prom dress... and be ashamed of those scars. To me, they are so beautiful... She is so beautiful!!! But what will she feel like? Who better, to get those answers from... than someone who truely knows?
I will have to think very hard, about the words of this adult CHD'er! I will have to learn more about the computer and if I can post things now, but be sure to never give them to the hands of someone who will abuse them. Can I post a movie to youtube now, erase it before she grows up... and not worry about it? I do not know that answer! If I write her name, somewhere on the web... can anyone google it and find it 10, 20 yrs. from now? I do not know this either?
I am talking about this, so that others in my shoes... who have never thought about these things until today... will have a chance to think about it now, and come up with their own best answers. I do not know, what the right answers are... all I know, is that it breaks my heart sometimes.... to think of how hard my Jilly's life will be someday. And I do not mean the physical limitations, I mean the mental ones. I will teach my daughter to be proud of herself, but you can not control your child's emotions! Yes, you can help them to grow up with a possitive self image... but that does not mean that others are not going to hurt our children with their horrible teasing, or hurt them as adults by refusing them a job based on their health issues. No, it is not legal... but really, will our children be able to prove that it is happening? No, not unless they meet some coward who openly tells them, this is why they are not hiring them... most cowards are not brave enough to do that!
So, from this day forward... I will try to figure out, what is best for my child! I want to give her every opportunity possible! And I do not want to hurt her!!!
Saturday, March 6, 2010
EQUALY DEVASTATING DIAGNOSIS
I have very little time to post, am headed to my Grandpa's 90Th birthday party. So, I am going to write some now... and plan to come back and add more later (hopefully today). Make sure you come back!!!
Your child has a CHD...
Your child had a STROKE...
In my opinion, those two diagnosis' are equally devastating to hear... I have heard both, so I think that my opinion is important!!!
Whichever you have heard, or if you have heard both... the feelings are so much the same! Very scary, confusing, devastating!
Once we learn more about the diagnosis... and begin to understand what it will mean in our lives... we all tend to head the same direction! We want to spread awareness, we want to support research, we want a prevention, we want an answer about WHY this happens way too often!
So, I believe that these two diagnosis' are intertwined!!! Our situation is, even more so... with both diagnosis, and I am finding others too!
So how can we join together to make a difference? There is already established, a "HEART" community, and same with the "STROKE" community. If we spread each other's words... what a difference we could make! And what is this all for? It is about protecting our children!!! There are so many tragedies out there, affecting our children... imagine if your child had a CHD, then suddenly they had CANCER too, or your child had a STROKE, but went undiagnosed with a CHD till later on, or your child has a CHD, then they have a STROKE too! Why wait, to support each other??? We have all, already learned... that it CAN HAPPEN TO YOU! So lets do all that we can, to support each other!!! That is my thoughts, at least!
Correct me if I am wrong (nicely please), but I think that the biggest thing the stroke community is trying to make people aware of... is that kids (baby's in utero/newborns/ infants/toddlers/ and so on) CAN HAVE STROKES!!! And the earlier the diagnosis, the better outcome (typically) diagnosis means delayed treatment... which results in permanent loss or difficulties, that could of been prevented.
Again, correct me if I am wrong... but the heart community wants to raise awareness that, 1 in 100 babies are born with some type of heart defect... and that these defects can go undetected, without tests to specifically look for the CHD. And some of those babies, will not survive because of the lack of diagnosis early on.
Yes, there are other issues we want to spread awareness about... but the bottom line is, we want to save parents and children from falling victim to these horrible outcomes.
So, if we go to our local hospital... and we ask them to be aware of one of the issues... how hard would it be, to mention the other too!!! Knowledge is the key to saving these children's lives, and preventing heartache for their parents!!!
So I ask you... however you are spreading awareness/raising funding/etc... Why not include both issues! After all, we know that there is very little funding for CHD research, and there is very little research being done for pediatric strokes... you could make a difference in so many lives!!!
I hope that others, will understand my desire to come together!!! Our children are all heroes, just on different paths... some paths are more alike than others... but we love them all the same!
Your child has a CHD...
Your child had a STROKE...
In my opinion, those two diagnosis' are equally devastating to hear... I have heard both, so I think that my opinion is important!!!
Whichever you have heard, or if you have heard both... the feelings are so much the same! Very scary, confusing, devastating!
Once we learn more about the diagnosis... and begin to understand what it will mean in our lives... we all tend to head the same direction! We want to spread awareness, we want to support research, we want a prevention, we want an answer about WHY this happens way too often!
So, I believe that these two diagnosis' are intertwined!!! Our situation is, even more so... with both diagnosis, and I am finding others too!
So how can we join together to make a difference? There is already established, a "HEART" community, and same with the "STROKE" community. If we spread each other's words... what a difference we could make! And what is this all for? It is about protecting our children!!! There are so many tragedies out there, affecting our children... imagine if your child had a CHD, then suddenly they had CANCER too, or your child had a STROKE, but went undiagnosed with a CHD till later on, or your child has a CHD, then they have a STROKE too! Why wait, to support each other??? We have all, already learned... that it CAN HAPPEN TO YOU! So lets do all that we can, to support each other!!! That is my thoughts, at least!
Correct me if I am wrong (nicely please), but I think that the biggest thing the stroke community is trying to make people aware of... is that kids (baby's in utero/newborns/ infants/toddlers/ and so on) CAN HAVE STROKES!!! And the earlier the diagnosis, the better outcome (typically) diagnosis means delayed treatment... which results in permanent loss or difficulties, that could of been prevented.
Again, correct me if I am wrong... but the heart community wants to raise awareness that, 1 in 100 babies are born with some type of heart defect... and that these defects can go undetected, without tests to specifically look for the CHD. And some of those babies, will not survive because of the lack of diagnosis early on.
Yes, there are other issues we want to spread awareness about... but the bottom line is, we want to save parents and children from falling victim to these horrible outcomes.
So, if we go to our local hospital... and we ask them to be aware of one of the issues... how hard would it be, to mention the other too!!! Knowledge is the key to saving these children's lives, and preventing heartache for their parents!!!
So I ask you... however you are spreading awareness/raising funding/etc... Why not include both issues! After all, we know that there is very little funding for CHD research, and there is very little research being done for pediatric strokes... you could make a difference in so many lives!!!
I hope that others, will understand my desire to come together!!! Our children are all heroes, just on different paths... some paths are more alike than others... but we love them all the same!
Wednesday, March 3, 2010
Infant&Childhood Stroke - Home
Infant&Childhood Stroke - Home
This is a really nice place to see info. about Infant/Childhood Strokes,
check it out!!!
This is a really nice place to see info. about Infant/Childhood Strokes,
check it out!!!
Therapy:
I am so so blessed to have wonderful therapists for Jilly!!! We have therapy every day, 2 on every day but Mondays. I will be lost someday, when Jilly goes to school and we do not have therapy at home each day. It is so exciting, to learn about their therapy skills!!! I think, when Jilly does go to school, I will be looking for a job somewhere in the school districts... working with these special children! It is so rewarding, to watch a special needs child learn... it does not matter if it is the traditional learning that most kids do, it is learning!!! I encourage every parent of special needs children... to find their child's special gifts, and push them to use those gifts the best that they can! We are so proud of Jilly!!! She may not talk or walk like most children... but she continues to amaze us every day! Her physical therapy skills are improving by 3months... every 6months. That is a really good rate, for all she has been through! And her skills in speech/special instruction, are unbelievable!!! When a child who has spent 1/3 of her life in the hospital, and 1/3 recovering... she truely has only had 1yr. of her 3yrs. to work on these skills! And yet, she can test in a 4yr. range for her receptive skills (she understands everything we say)! No, she does not talk with her mouth... but it is a rare moment, when we do not know what she is telling us!!! She signs and gestures anything she needs or wants to say! I ask our therapists to push her, as I know that it is for the better... and she truely enjoys being pushed!
Yes, I am bragging about my child... I am so proud of her, and I am so thankful to all the therapists who have worked with her... planting the seeds, for a successful life! So, this post is to say Thank you to Pat and Tina, for all of their hard work, love and compassion... to help my Jilly succeed!
My wish is that everyone with a special needs child... will find those special people, who really care and want the best for their child!!!
I am so proud, to be a mom of a SPECIAL child!!!
Yes, I am bragging about my child... I am so proud of her, and I am so thankful to all the therapists who have worked with her... planting the seeds, for a successful life! So, this post is to say Thank you to Pat and Tina, for all of their hard work, love and compassion... to help my Jilly succeed!
My wish is that everyone with a special needs child... will find those special people, who really care and want the best for their child!!!
I am so proud, to be a mom of a SPECIAL child!!!
Sunday, February 28, 2010
The day of the stroke...
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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
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