Mended Little Hearts

Mended Little Hearts of Bakersfield CHD Awareness Week 2012

February 14, 2012

Joy Byrom, the Coordinator for Mended Little Hearts of Bakersfield is pictured below with the display set up at a local health food store to raise CHD Awareness. They did a little bit of fundraising and met some new Heart Families. This is a great display and the perfect location for a fun afternoon CHD Awareness event. Thanks for sharing your event with us MLH of Bakersfield!

Haley: Heart Hero, Age 11

February 14, 2012

Haley’s Mom writes…

“Haley is 11 years old and is a heart patient. She was born with Transposition of the Great Arteries with Reversed Coronary Formation. She had three surgeries before she was 3 months old, countless catheterizations after which she required blood transfusions. Today she has pulmonary stenosis, an aortic leak and her septum is opening. Overall, she is very healthy. I count my blessings every day. I’m so glad to have found Mended Little Hearts here on the MS coast. We’ve met a lot of wonderful families and made a lot of friends.”

MLH of Winchester CHD Awareness Week and Announcements

February 10, 2012

This is what is going on with our Winchester group, Thanks Megan for sharing!

“There will be no February Meeting this month, as our local chapter is involved with several events going on this month.

We are sponsoring a blood drive this Monday, February 13 from 10am-3pm at Jim Barnett Park. If you are able to volunteer your time to help with this event or are interested in donating, please contact Jenny Myers or Sara Northcraft if you are interested in helping with this event.

We will also be participating in a Community Resource Fair on Wednesday, February 22nd from 7-8:30 pm at the Frederick County Public Schools Administration Building and the Valley Health Wellness Fair on Saturday, February 25th from 10am-6pm at the Apple Blossom Mall. If you are interested in helping at either of these events, please email Megan Setzer.

Awareness events that we have going on right now during CHD Awareness Week: Chick-fil-a Rutherfords Crossing/Pleasant Valley Road locations are handing out ‘I See Red’ CHD Awareness fliers, local business and group members have posted CHD Awareness signs, Moms Everyday is airing our MLH interviews in the morning on TV3 (http://www.momseveryday.com/winchester/health/Mended_Little_Hearts_of_Winchester_137099973.html).

We have a few members who are planning to attend Congenital Heart Lobby Day in D.C. on March 1st. We will be asking our legislators to fund needed research for congenital heart defects and improve and enhance data collection for this population. If anyone is interested in attending, you can register on the Mended Little Hearts website at: http://www.mendedlittlehearts.org/page.aspx?pid=423

Our next meeting will be held on Tuesday, March 13th at 6:30pm at the Winchester Medical Center System Support Building. We are happy to have Developmental Specialist, Karen Fleming coming to speak to our group.”

Oregon CHD Awareness Week Proclamation

February 10, 2012

North Carolina CHD Awareness Week Proclamation

February 9, 2012

Visalia, California CHD Awareness Week Proclamation

February 9, 2012

New Jersey CHD Awareness Week Proclamation

February 9, 2012

I am a Heart Mom: Guest Post by Annie Brogan

February 8, 2012

We would like to Welcome Annie Brogan, a Heart Mom and a new Featured Author. This is Annie’s first blog post with Mended Little Hearts and I think it is perfect for CHD Awareness Week. We look forward to reading more of Annies thoughts on life as a Heart Mom!

Bio:
Annie Brogan is the wife of a pastor and the mom of three children…two jobs she feels highly unqualified to be working! Prior to trading in her high heels for a vacuum, Annie taught ESL in an ethnically diverse county in Northern Virginia. Now she stays home in an attempt to care for her family, and blogs in her free time. Annie is currently working on a book that documents the journey she has had raising a child with a severe heart defect. Since she just found out that she’s pregnant with #4, the book may not be completed in this decade. You can follow her struggles and triumphs at www.anniebrogan.com.

I am a heart mom.

I have felt, at a twenty-week ultrasound, floorboards cracking and giving way under my jumping, celebrating feet as the words Congratulations, it’s a girl were chased away all too quickly with There is something wrong with your baby’s heart.

I know the torment of wondering, wrestling, combating a viscous voice that whispers…This is all my fault…

I know the pain of weeping in my husband’s arms after a baby shower, unsure if my baby would ever wear her new clothes.

I am a heart mom.

I know the fear of labor pains in a cold room, deep groanings of the unknown drawing near.

I have given birth for an audience of twenty doctors in a room quiet and solemn.

I have watched my baby–still wet and fresh–plucked from my arms and ushered to a Neonatal Intensive Care Unit where she would be sustained.

I have sat in a NICU with brittle, four-pound lives, warm under heat lamps like delicate plants, praying over my baby.

I have guarded my heart, afraid to love something I wasn’t so sure I could keep.

I am a heart mom.

I have held a baby with cords and wires and A-lines and tubes and all the while held my breath and my heart so it wouldn’t scrape.

I have pumped my milk throughout the night, throughout the day, in bathroom stalls, in parking lots, in dressing rooms, in public, in private, in the heat, in the cold…wishing I could give more than all that I had.

I have said goodbye to a daughter I just met so she could be delivered to a doctor who would stop her heart…in an attempt to make it whole.

I have endured waiting rooms painted white like faces bleached with fear.

A stomach that is so nervous it feels poisonous.

The shaking. The waiting. The surgery you can’t be there to control.

I am a heart mom.

I have felt the hand of a fighting life grab my finger and hold it…asking silently for me to lead her.

I have spent days that turn into nights on the seventh floor, all around me the Intensive Care Unit beeping and humming and pumping and upholding.

I have heard those sounds in my dreams.

I have sat in an intensive care unit while my baby lived and the baby on the other side of the curtain didn’t.

I have brought a baby home–so vulnerable and trusting–with a pulse-ox machine never far and CPR training notes posted high on the bulletin board.

I have sanitized people head to toe before letting them enter my home, missed Christmas parties, dinner parties, birthday parties because someone in attendance had sneezed, and have accosted strangers attempting to squeeze my baby’s little cheeks.

I have nurtured a bruised baby with scars in vulnerable places.

I have awoken in the middle of the night to the frantic words, “I’m taking her to the Emergency Room.”

I have watched her heal and witnessed the miracle of recovery.

I have fed her her first bites of food.

Watched her take her first steps.

Say her first words.

I have seen the power of prayer.

I am a heart mom.

And my world will never be the same.

Join Mended Little Hearts for a Live Twitter Chat to Kick Off CHD Awareness Week

February 6, 2012

February 7-14th is Congenital Heart Defect Awareness Week. 1 in 100 babies are born with a CHD, making it the number one birth defect.

Join us on Tuesday February 7th at 1pm est for Live Twitter Chat as we Raise Awareness. We will be sharing CHD Facts and stories. Many people are unaware that CHDs are so common, if you or some one you know has been impacted by Congenital Heart Defects, join us and share your story.

You can find us on Twitter @MLH_CHD we will be using the hashtag #CHDAware, so look for that and use it to participate.

Mended Little Hearts

Little Hearts Hold Big Hopes