Stories

Sometimes nothing is better then real parent to parent stories. Stories about real life, to know you’re not alone. Below are some stories for you. Stories about life with CHD, from a parent’s view.  Mended Little Hearts of SWPA wants you to share and relate to these stories and be able to feel like you belong! We are there, we have felt it, we still feel it! And we want to share with you. If you want to share your story we would love to have it!  Contact us at mendedlittleheartsofswpa@hotmail.com

 

The Day I Became a Heart Mother

One day my world came crashing down,
I’ll never be the same.
They told me that my child was sick.
I thought, “am I to blame?;
I don’t think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I’ll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child’s bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can’t know your ways….no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he’s here,
but my heart begs, “PLEASE let him stay”!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, “will he be alright?”, to watching him reach out his hands.
With every smile my heart just melts, despite life’s harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It’s the door to his beautiful heart).
God must have known how much I’d love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day…….
When I became a “Heart Mother”.

– Author Unknown

A Letter from Gabriel’s Mom…..

Gabriel Colon “The Miracle Baby” Gabriel is truly a miracle. His mother was told she was unable to have children without the help of fertility medication. Well two months after she got married she conceived Gabriel. The pregnancy was pretty normal until week 33. She went for a routine sonogram and the doctors said that they seen something abnormal. She was sent to have a fetal echocardiogram done in Pittsburgh at Magee Woman’s hospital only to find out that her baby Gabriel has heart defects. They found four different heart defects: Double Outflow on the right side, a hole between the two ventricles, pulmonary artery was to small, and the left ventricle is small. She was set to be induced on April 6,2010 and Gabriel arrived on April 7, 2010 weighing 5lbs 13oz. After he was born his mother got to spend a few minutes with him before he was taken to Pittsburgh Children’s Hospital. He stayed on medication to keep the hole that babies are born with in their hearts open to keep him alive. One week after he was born he was taken into surgery to have a BT shunt put in. His stay in the hospital wasn’t very long after his surgery. The nurses were shocked at how well he was doing. One week after surgery Gabriel was released to go home.  He was released with a feeding tube but never had to use it. He is growing stronger everyday.  Currently he is only on one medication which is aspirin to keep his blood thin. Today Gabriel is 11 1/2 weeks old and weighs 11 lbs. He will be going for a heart Cath on July 7th and at that time the doctors will determine when his next major surgery is.

 

Letter from Trenton’s mom:

Trenton Alexander was born on St Patrick’s Day 2009. Right away the doctor noticed his coloring and breathing. They called in a Cardiologist from Children’s hospital to do an Echo Cardiogram that afternoon. It was then told to us that Trenton had a complete AVSD and a Bicuspid Aortic Valve. We were lucky enough to bring him home with us after 48 hours but we were visiting the Cardiologist and monitoring his heart function. He was placed on Lasix and Captropril and at 3 months of age he started into heart failure. The decision was made to perform the repair. His repair was made on June 30th 2009 and we spent 6 days in the hospital. His recovery was great and he is doing well. He is now thriving. We will monitor his valves as they will need replaced at some point. But for now he’s a 16 month old typical boy, getting into everything and bringing joy and love to our hearts everyday! The journey has been a tough one, but a fullfilling one. We love our lives and wouldn’t change a minute of it!

 

Jesse’s Story. A letter from his mom:

Jesse was born on December 27, 2007.  We knew he would be born with heart and kidney problems, but we did not know what to expect til after he was born.  As soon as he was delivered through C-section, he was taken to NICU at West Penn Hospital so he could be stabilized.  This is when he was diagnosed with Tetrology of Fallot.  He was then transfered to Children’s Hospital of Pittsburgh to the CICU where they could monitor him better.  I was stuck at West Penn and couldn’t be with Jesse, which tore me up inside.  I got a phone call from CHP saying that he needed a heart cath for a stent to be placed into his Pulmonary Artery to allow for better oxygen and blood flow to his lower extremities.  After 3 days without my son, I was discharged from the hospital and went straight to CHP.  When we arrived in CICU, he was hooked to many tubes and wires.  I finally got to hold my son for the first time.  I cried and kissed his tiny head as he slept so peacefully in my arms.

He was addmitted into CICU then up to 7 South for 2 weeks when finally we we able to take him home.  We were home only 12 days when we took Jesse to our local ER because his SAT’s we dropping and he was turning blue.  He was then air lifted back to Children’s.  After echo’s, EKG’s, ultrasounds, & x-rays, the doctors then decided to operate on him for the 1st time.  On January 21, 2008, Jesse had his first open heart surgery.  This time, Dr weardon & team placed a Shunt into his tiny heart to allow for better blood flow and to open up the arteries/valves.  We had our ups and downs during this stay.  But after 10 days, we took him home again.

Jesse visited Cardiology every 3 months to have EKG’s and Echos done to monitor his heart.  He did very well for 6 months.  He gained weight and grew like he should.  The Cardio team then scheduled his 2nd open heart surgery.  On August 22, 2008, Jesse had his second surgery.  It was then the surgical team corrected everything.  The hole was closed, the valve was corrected, and the Shunt was closed a tiny bit.  And again, after another 10 days in CICU, and numerous ups and downs, Jesse was discharged to come home.

My little guy has been doing wonderful since the surgeries.  His surgeon told us that he may need a future operation to open up the Shunt, but hopefully by then they will be able to do it via Cath and not have to open his chest again.  He is a normal, hyper, active 2 1/2 yr old.  He plays with his brother and gets into trouble like a normal child should.  Now…we still need to deal with his kidneys.