Re-posting an old story of our journey... needs updating... for sure!!!

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"...

Getting organized!

I thought I would get going on updating this blog... I guess people are having a hard time being added to the fb page Pray for Jilly... I need to get organized... so everyone can see everything!!!

Goodbye to Early Intervention

I feel very sad, to be ending such a wonderful experience as Early Intervention Services. I can say, that in our State and County... Early Intervention is truely there, to help the children succeed!!! Our coordinator, Marlene has become a dear friend over the last 3yrs. and I thank her for all that she has done. We never had any trouble, getting the therapies needed for Jilly... approved. It has been a long 3yrs. of therapy in our home almost everyday of the week, and at times... 2x/day, EVERY DAY!!! We have had to work around so many health issues, but through it all... we have seen such improvement in our Jilly!!!

Feb. 14th, 2013

Feb., 2013... another year gone by! A wonderful year of learning and growing. Again, it hasn't been easy but I still feel very blessed to be on this journey with our Jilly!!! CHD Awareness month/ awareness week, and also another anniversary of being on this journey. We met Jilly in February, 2007 when she was 5wks. old. She was in our custoday at 6wks. old and we have been together ever since. Looking back, it is so clear to see the path God has led us on... reasons for all these trials we have experienced because it brought us to today, Feb. 14th, 2013. Happy Heart Day!!! God bless!!!

Princess Jilly's Journey

Princess Jilly...

A Story of Love, St...

By Author: Joy Kimble

Book Preview

It's been a long time since I blogged, but I may start doing more of it... we are still on this journey full of twists and turns... our latest is the possiblity of being listed for heart transplant! Jilly is seeking my attention right now, so this will have to wait... but I hope to keep better track of our journey with Jilly soon!!!

Happy Easter, 2012

Feb. 7th, 2012 CHD AWARENESS WEEK:

Today is the official start of CHD awareness week. Each year Feb 7-14 is recognized as CHD awareness week. If your child had it, wouldn't you want to share it? Did you know that congenital heart defects are very common?

Congenital heart defects are conditions present at birth that affect how a baby's heart is made and the way it works. They are the MOST COMMON type of birth defects. In the United States, about 40,000 infants are born with a heart defect each year.

CHD Facts Congenital Heart Defects are the #1 birth defect worldwide Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year) Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms... of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD Though research is ongoing, at least 35 defects have now been identified Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.
Jilly was born with a heart defect called Hypoplastic Left Heart Syndrome. It is considered the most complex heart defect and yet... a newborn can come into this world with this diagnosis and noone even knows.
Baby's are born with a fetal circulation, this helps mask some of the heart defects that are not picked up in a prenatal ultrasound... it can be days or even weeks before anyone knows of the diagnosis because there is not a routine test to check for it at birth or before leaving the hospital. One of the tests, checks the oxygen saturations in their blood by putting a simple bandaid with a special light on it around the baby's toe... it won't pick up all CHD'S, and it is important that the O2 sats. are checked at about day 3 of a baby's life (which is when the fetal circulation starts to close off)... this will pick up many of the possible problems with the heart (sadly, not all)... it will make a difference and some States have accepted it into law, but not all of them yet.
SO ISN'T IT SHOCKING, THAT A BABY WITH HALF A HEART CAN BE BORN AND GO HOME WITH THEIR PARENTS WITHOUT ANY DOCTOR KNOWING THIS!!! WELL IT IS TRUE, IT HAPPENS WAY TOO OFTEN, AND SADLY THE OUTCOME IS NOT AS GOOD WHEN A CHD IS DETECTED SO LATE!!!

So you see, awareness is the key... share this with everyone you know!!!
1 in 100 babies with a CHD... this could be your child, your friend's child, your relative, your neighbor... knowledge about CHD'S will save lives, and will save families from the horrid pain of loosing a child!!!

If you know someone who is pregnant... share this, make sure they are knowledgeable about heart defects, make sure they have routine ultrasounds during pregnancy! Don't be afraid to ask them to double check the heart during that ultrasound. Ask for your baby's oxygen saturations to be checked at birth and prior to going home from the hospital!!! Save a life!!!!

February, 2012 CHD Awareness Month

As this year begins, I look back on 2011 and am so grateful for all that we have been through! When we think of CHD's... you would think that we would only be able to focus on all the tradgedies of this diagnosis... but that is not the case! We concentrate on the HOPE that our children have shown us... we think of the accomplishments and celebrations we have seen. Our Jilly is now 5yrs. old, and she has had 5 open heart surgeries, with more to come and yet what is most important is the grace she has shown through all she has been through. Each year, each day, each moment is a blessing from God... he has given us these things! God created these children with CHD's for a reason... not for pain and sorrow but for Joy and Hope. HE has sent us a piece of Heaven, to love and to hold. Each of them, with a different journey, each with a different length to their lives... but each, to live or to leave a legacy for others to be blessed by.
Jilly has overcome so many things in the past year... suffering brain injury in Nov. of 2010 was the beginning of a new day, a new way of life. Yes, we mourned the losses that day but the next day we celebrated life, we celebrated the doctors who saved Jilly's life, and we celebrated God, who directed the doctors on how to extend this precious gift of life for Jilly!
One day at a time, we worked towards our goal: to be Jesus' sunbeam... whatever that may mean. For Jilly, it has meant for her to shine in her developing skills. To learn and to grow, to strengthen and to develop. Jilly is now working towards going to kindergarten in the Fall. Jilly regained her ability to use her body, to sit and to walk, and to do the fine motor skills needed in life.
Things may not be exactly what they could of been without the brain injuries in her life... but they are exactly what God meant them to be, and we are so grateful for her and her accomplisments!
Jilly wakes up each morning with a smile on her face! If you say the word doctor or show her pictures of medical things... she points to herself and says "ME"... WITH A SMILE... if you say to her, yes you have doctors, she points to her scar on her chest and says "ME", and she smiles some more. We tell her that is where the doctors went in to work on her heart, she smiles and goes and gets her stethescope. She listens to her own heartbeat, then she checks to make sure ours is ok too.
So 5yrs of living with a CHD, has not defined Jilly... rather 5yrs. of living with LOVE... that is what she knows. 5 yrs. of God protecting her, 5yrs. of mommy and daddy protecting her, 5yrs of her big brother making her laugh. 5yrs. of happiness... that is what 5yrs. with a CHD has been like for us.
Jilly does not remember the hard times, we do... but they are a distant memory. We know there will be more, and we pray for Jilly to overcome these hardships and move on through the rest of her life, with the Grace, and Elegance that she has done so far.
I am grateful for this journey,it may not seem perfect in most people's eyes... but it it perfectly ours, and I rejoice in our journey and the opportunity to share our Jilly with others... teaching them the true meaning of God's Grace for us.
My biggest desire, is for other families to know... that CHD's are survivable. That knowing about these heart defects prior to birth is the utmost important issue. So that these children can be cared for properly and timely. Secondly, I hope for each family who travels this journey, to have the kind of support we have received from the Heart Community, and all those who decided to join the support from the love and kindness of their hearts.
CHD's do not have to paint an ugly picture... just look at these children, they are beautiful and their surgeries do not define who they are. They are just precious little souls, here to experience love in this world as all children should!!!
I thank God, for our Jilly Rose... her beauty, her personality, her giggle... brightens each and every one of our days!!! Therefore, I thank God for CHD'S!!!