Thursday, June 27, 2013

Alaina's Story, by her mama

Post by Tami (adapted from her Journal on CaringBridge)

In June 2012, we found out we were expecting!

Unfortunately, we found out in September, during her 20 week ultrasound, that Lainey had a severe heart defect with complications. The condition was called Hypo-plastic Left Heart syndrome (basically the left side of her heart was very under developed and right side must do all of the work) 2nd issue is Pulmonary Valve stenosis. (the pulmonary valve, which transfers oxygenated blood to the lungs and heart is under developed as well) The stenosis is causing a 3rd issue called Hydrops which means she had fluid around her lungs, stomach, and skull. This caused her lungs to mature slowly. There were only 4 documented cases of this combination of issues in the world. She was special already!

She could get oxygen while inside of me but not after she was born. We received devastating news around Halloween when we found out that because of these issues, she was going to need a heart transplant once she was born.

I was in the hospital from November 27th on, for monitored bed rest and until I delivered. We needed to get her big and strong enough for her new heart which meant we needed to get her to at least 36 weeks. She was on the National Transplant Registry list. It was bitter sweet knowing that one has to die for one to live. I can say now, while going through this, I understand the love & strength that it takes to be a donor family and would do the same for someone else.

We prayed for Alaina Rose everyday. Some days we were sad. Some days we were angry. But most days we were optimistic and excited to meet our special baby.

She was born on December 25th, 2012 at 8:27am. She was fighting for every minute and every breath. It was so hard to see but it made me realize how much she wanted to be here and be able to have the life she deserved.

Beautiful little Lainey <3

Even at 3 days old, under all of the equipment you could see her fighting a fight that we couldn't possibly understand.

She was baptized on January 2nd. We had faith that God was protecting her and guiding her every step of the way.

Alaina had a procedure done on her heart a few days later. They were going to open up her very narrow pulmonary valve with a balloon type catheter. The purpose was to help increase the blood flow and cause less stress to her sick heart. We hoped it would also help lessen the fluid (hydrops) that was still trapped in her little lungs and body. We needed her to get stronger so that when a heart became available, she was as strong as she could be to undergo the transplant.

The procedure went exactly how we wanted it to go and she came back to her room, heavily sedated but still gorgeous. We hoped this would help her lungs and make her strong enough to receive a heart ❤.

Her lungs were maturing and we were headed in the right direction. She was making her Doctors smile and keeping us all on our toes. She was a fighter, that's for sure!


We were completely head over heels in love with our beautiful baby. She was  inspiring and we were so blessed to have her in our lives.

On January 14th, our beautiful Alaina Rose became an Angel in heaven. She fought harder than anyone I've ever seen. We know she's not in pain anymore.

One person's "so little" can be another persons "everything." That's how we feel about our time with Lainey.
Alaina Rose lived for 20 days outside of my body. I was blessed to have gotten to love and know her for 8 1/2 months before that.

We are forever changed by the time we had with her.

My biggest hope is that in one of those moments when she could hear us talking to her and was trying so hard to open her beautiful eyes, she saw her mommy and daddy smiling down on her.

I cling to the fact that I can feel her now, with her beautiful eyes wide open, smiling down on us.

We miss you every minute of every day, Lainey. Thank you for your love and for touching so many with your beautiful heart. 

*You can read the entire story on their CaringBridge website: HERE.

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