Update on Hannah

This is the update from Hannah's mom's status on facebook! Good news! Keep praying!!!!!

"The catheter is doing what it is supposed thank you God. It is resting the kidneys and pulling off the fluid. she is more alert than she has been in a week, she is nodding yes and no to things and opening her eyes a lot. She even mouthed I love you today and brought her mommy to tears. Thanks for the prayers please keep them up."

CONTINUE TO PRAY FOR HANNAH COLLIE!!!!!!

Hannah is in need a major miracle this morning. She is going into surgery because her kidneys are shutting down and building toxicity in her body. She is in critical condition but they say they are going to put in a pedi catheter to drain some of the fluid off because her. Pray for a miraculous healing of her kidneys that will awe the drs. and for her parents Amanda & Jason.

Pray for Hannah!!!!!!

PLEASE keep this sweet angel in your prayers!

She is 4 years old and had a heart transplant two years ago.

Last week her body started to reject the heart and she is in Childrens Hospital in Dallas now under going treatment with some pretty potent meds. She will be under close watch for the next several days to see if the meds are going to stop the rejection.

This is where we come in with our concentrated prayer for our Father to show mercy on her and heal her sick and tired body. Pray for her mom and dad (Amanda and Jason) as they too need the strength of the Lord to see this procedure through.

The power of Prayer allows us to let go and let God have his way!!!!!

For anyone who would like to send cards, notes of encouragement, etc....the address is :
isChildrens Medical Center

1935 Medical District Drive

Dallas Tx 75235

Attention Hannah Collie

CVICU rm203

It's My Heart CHD Conference 2009

Yesterday, I got to go to the "It's My Heart CHD Conference" in Houston! It was GREAT!

For those of you who don't know....Dr. Mott has been recruited to Philidelphia Children's and will be leaving Texas Children's in August. :*( He is Sarah's cardiologist and we have truly loved getting to know him. He is a great doctor and Sarah likes him so much that she frequently asks to "call and talk to Dr. Mott"! LOLI have to explain to her that he is a VERY busy and important Doctor and he can't answer the phone. We will be fine with a new cardiologist! Dr. Mott told me he has us "taken care of"! Yea! Good to hear since her surgery is coming up in October!






Okay.....on to the conference....Some of the interesting things I heard today:

*There was NO heart surgery allowed prior to 1900.

*Dr. Robert Gross wanted to close the first PDA but was told NOT to do it. He waited until his boss was out of town and it was a success!!!!

*Dr. Helen Taussig (The "T" in the BT Shunt) was the first female pediatric cardiologist. She was denied at Harvard as a student because she was female so she went to Hopkins and became VERY successful!!! (despite being told "women" couldn't do that!) Ladies.....this is a VERY good example to tell our little girls! ESPECIALLY those with heart defects!

*Long ago, the only way to stop the heart was to reduce the child's body temperature to 30 degrees! That only allowed for 10 minutes of surgery time. They literally had to PACK babies in ICE! THANKFULLY, we have much better methods available now!

*Dr. Gibbons, the man who created the first bypass machine.....spent THIRTY YEARS developing it and figuring it out!!!!

*The first survivor that had been operated on with a bypass machine lived until the year 2000!!!!!

*Before the bypass machine....they tried to use a parent as the bypass machine. The theory was that the mother provided oxygen for the baby in the uterus so they would RE-Attach the baby's blood flow to the mother during surgery so that the mom's heart could do the work for the child's body!!! MAN....and we thought WE had it bad sitting in the waiting room! (although, as we all know....we are still sending our hearts in that room when they operate!) This was called Controlled Cross Circulation. There were 45 operations of this kind. 28 survivals.

*Now, 85% of CHD children become adults! This percentage is STAGGERING compared with even 10-20 years ago!!!

*CHD affects 8 out of 1000 births. 1/3 of these is critical needing surgery before 1 year old.*3000 kids per year are Fontan Candidates.

*The focus in cardiology care has shifted over the years from simply "keeping the child alive" to "giving the child a quality of life!"

*CHD in a child puts a higher risk factor for divorce on the parents.

*Perception of support can actually help cope with our issues even if the actual support is not a reality. - Dr. Mott

*17 out of 25 siblings interviewed said they worry about their CHD sibling dying. 7 out of 10 parents said they didn't think their children thought about that.

*Texas Children's Hospital is the ONLY children's hospital to have Stereotaxis Technology in the Cath Lab. (magnetic navigation) A cath doctor could literally be in another state performing the movements of the cath by remote control! (kind of like video games but WAY more serious!)

*In 1929, Dr. Forssmann developed the first Cath Procedure. He did it to HIMSELF! He inserted the cath in his arm, walked down the flight of stairs to the x-ray machine, took an x-ray, showed it to everyone and got FIRED! Then became a urologist and much much later, shared the Nobel Prize in 1956 for developing the heart cath!!!!

*The newest thing is called "Cutting Balloons" which are the balloons used for caths but they have 3-4 microsurgical blades mounted. These are helpful in cases of scar tissue or narrowed vessels that do not respond to a normal balloon.

FAMILY LIFE:

*Dynamic: Marked by usually continuous and productive activity, change or effective action. Energetic, forceful, vigorous, spirited, alive! (Let's all strive to be "DYNAMIC FAMILIES!"

*It's NOT what happens TO us. It's what we choose to DO with what happens to us that matters.

*You must choose meaning or despair. However, the only path to meaning is through despair.

*The best thing we can do for our children whether they are children of CHD or NOT is give them:
*Stability - Find stability in little things.
*Predictability - Find the things that you can show them are predictable.
*Honesty - Tell them the truth without scaring them but don't say it won't hurt if it will, etc. Ex: "It may hurt, but it will get better."
*Safety/Boundaries/Discipline - DO NOT let your CHD kids run over you! They are already different. Don't make them MORE different by not treating them with the same rules as everyone else.
*Sense of Control/Choices/Responsibility - EX: "Would you like me to make your appointment for the morning or afternoon?" "Would you like to wear something special home from the hospital?" etc. FIND things for them to make choices about!

*A book we should read is "Raising Whole Hearted Children" by Renee' Brown

Ways to COPE!
1. SPEAK out.
2. FEEL out loud.
3. ASK for what you need! (emotionally, physically, etc.)
4. TOUCH let the child know their body is more than just their heart. Hold their hands. Rub their head, feet, etc. while in the hospital. This gives them a sense of connection. Eye contact is a kind of touch.
5. Share your story.
6. LOVE
7. BREATHE fully every day. STOP. Think about it! Breathe in with your nose and your tummy should expand. Then, fully exhale through your mouth and empty your lungs. This is ssoooooooo good for your system. AND your child. You can practice together.
8. PLAY! Families that play together stay together.

*YOU cannot lead your family where you ARE NOT willing to go. (You cannot lead them to happiness, peace, despair, sorrow, pity, if you are not willing to go there.)

Okay....those are some highlights that I found very interesting and wanted to share!!!!!! Hope something on this note helps you in some way!

The best parts of the day were that I got to talk to Dr. Heinle and he was happy to tell me that he saw Sarah's name on his "upcoming" list yesterday! He hasn't seen her for 4 years and he remembers her! He is the surgeon that has done both open heart surgeries! I didn't even want to shake his hand because I'm scared to touch it! LOL What if I squeeze to hard and broke his finger! Knowing that his hands have touched my daughter's heart makes me cry a little tear! What a special gift!

Also, Dr. Mott pulled me to the side to talk to me about his move. I could tell that he had a hard time making the decision to take the next step in his life. I am glad for him that he did, though!

I met O'Shea! Mark & Jay are so sweet! They are adorable and autographed a CD for Jason! Mark is an adult that was a child with CHD! Watch them on Can You Duet on CMT on Sat. nights at 7 pm.!!!! They are in the finals!!! (Like American Idol but for Country singers!)I met some GREAT girls from Michigan today! Fun to talk to and very inspiring!!!!

Have a blessed week! Sharon

Dr. Heinle from Texas Children's Hospital
explains that when a child is an infant, their heart is the size of a normal strawberry!

Mark & Jay O'Shea singing for us! What a talented and amazing couple! So super sweet, too!!!

Our Blog is UP & RUNNING!!!!!!

Hello, Everyone and welcome to Heart Strings Group!

We are based in Lufkin, Texas and are a support/awareness group for families affected by Congenital Heart Disease. If you or someone you love has CHD, please feel free to contact us regarding resources, meetings, support from people with like situations!

My family is affected by CHD. Our daughter, Sarah Kate is 4 1/2 and is soon to have her completion of the Fontan Procedure. (Her 3rd open heart surgery!) She is a picture of health other than her heart problems and we are so blessed by her. I feel very strongly that God gave her to us to strengthen us through Him and also to help others. I would have never been aware of all of the problems children with CHD face if I wasn't blessed with a child of CHD, myself. She is the best thing that has ever happened to our family of four. Our son, Jason, 10 years old is a compassionate and caring person because of Sarah's ordeal. He sees the need to help others and loves getting a chance to do so. We are so thankful for all of these things.
I will be posting a link to her story in the links section.

If you know of any helpful links that would be useful to others concerning CHD...please email email them!

Our email is heartstringsgroup@yahoo.com

We would love to hear your stories and see photos of your children of CHD to be featured monthly on our blog! Email them to the above email please! Your story could help someone else!

Our first meeting will be Tuesday, June 23, 2009 at 7 p.m. at Southside Baptist Church in Lufkin. (Across from Livewell Athletic Club on Tulane Drive)

Thanks and WELCOME!

Sharon Swan
Founder, Heart Strings Group