Monday, February 15, 2016

Day 15 - Mackenzie & Paisley Billigmeier

You can read our stories from previous years here (2014) and here (2015).

If I told you my story
You would hear hope that wouldn't let go.
If I told you my story
You would hear love that never gave up
If I told you my story
You would hear life, but it wasn’t mine

If I told you my story
You would hear victory over the enemy
If I told you my story
You would hear freedom that was won for me
If I told you my story 
You would hear life overcome the grave

If I should speak, then let it be…
Of the grace that is greater than all my sin
Of when justice was served and where mercy wins
Of the kindness of Jesus that draws me in
Oh, to tell you my story is to tell of Him.

All three of our little ones were born in China, and two of them were born with CHD…

Last year I talked about our oldest, Mackenzie, who has been home for almost six years now. 

She was born with ToF (Tetralogy of Fallot), DORV (Double Outlet Right Ventricle) with Pulmonary Atresia. She had her first heart surgery When she was two and a half, just after coming home. She will need a second heart surgery in the next year or two to replace her pulmonary valve, which is quite leaky. 

Mackenzie is deaf in one ear and has profound hearing loss in her other ear, so she wears a hearing aid.

To know Mackenzie is to know joy. She feels love, and happiness, and excitement all of the time, and she is all in. She is beautiful and smart and funny, and so confident in who she is. 
She is proud of her brave heart scar, and picks the most vivid colors for her hearing aid. She is brave, and wild, and we could not be more proud of the wonderful girl she is.

We adopted Paisley just over a year ago, and what a crazy year it has been! 
Paisley was born with single ventricle, single atrium, pulmonary artery stenosis, Heterotaxy syndrome with asplenia and dextrocardia, and TGA. 
She developed liver fibrosis and protein losing enteropathy (PLE) shortly after we brought her home, and has been in and out of the hospital 14 times over the past year with complications from these issues. 

Last January she had surgery to try repair and separate her common valve into two. Unfortunately, it failed, and given her issues with PLE, she was not a candidate for the Fontan surgery. 
We were asked in May during one of Paisley’s hospital stays if we would be willing to start the process to see if she would be a candidate for heart transplant. We said yes that same day, and signed the paperwork to get started.

Paisley improved for a couple months, but then started to lose weight. Her little heart just couldn’t give her the energy it took to eat. In September she had surgery to have a g-tube placed to help her gain some weight. 
While we were there we heard that she was listed for transplant. 

Just two short months later, in November, we got the call that there was a heart for our baby girl. 

Paisley received her new hero heart the day before she turned three years old! What a birthday gift, one I am sure we will never be able to top!

Paisley had a few setbacks with multiple trips back to the cardiac intensive care unit, but she came home last month to live her new life, and she is LIVING! 
Our sick girl with no energy has been transformed into a happy little three year old who lives life with all the gusto that her perfect little heart can manage.

We have been beyond blessed to be Paisley’s family. After adopting her we realized that even though Paisley needed a family, God knew that we needed her even more. She has taught us more about living and loving in the year we have known her, than in our whole lives before her. This kind of love is risky and scary, and our hearts could be completely broken, but this love? It is so worth the risk.

Maybe you’re thinking about adopting a medically complex child…
If I could give you one piece of advice it would be this. 
Don’t be afraid to be afraid.
What I mean is that being afraid is natural. It’s scary, loving someone you could lose. 
But, oh, when those little hands reach up and touch your face, and those little eyes look into yours, and that little voice calls out for you, for Mama, you realize that it is all worth it. 

Choose hope. Choose hope even when it is hard. Let your heart be all in. Love until you feel like your heart has given all it has, then give a little more. 
It is always, always worth it.
These children are so, so worth it.

We may find relentless heartache in our days, but we must never lose relentless hope. ~ Ann Voskamp

But as for me, I will always have hope. ~ Psalm 71:14


Amber and Kyle said...

So very inspiring to read. This touches my heart. Thank you!!

Andrea O. said...

I've loved following Paisley's story!

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