Tuesday, February 17, 2015

Day 17 - Mackenzie & Paisley Billigmeier

Five years ago this month we got our pre-approval to adopt Mackenzie. You can read more about her story on last year’s 28 Days of Hearts here… She was our first everything; our first child, our first heart baby, our first deaf child, she was our first. 

She was also the most amazing person I had ever met. 

Mackenzie had ToF, and DORV, with pulmonary atresia, and she had surgery to repair her ToF four weeks after she came home. She will need to have a valve replacement in the next few years. She is doing so well, and even though she tires easily these days because of her valve regurgitation, she is full of life! She loves her family and her friends, and she excels in school. She loves with her whole heart, and her whole heart is beautiful.

We adopted our son two and a half years later, in April of 2013, and for a couple months we thought our family was complete…then I started wanting more. 

I had been thinking that we could maybe reuse our dossier for our third child, but when I mentioned it to my husband, he felt like our family was complete. 
I prayed… I prayed, and I searched the waiting child list. And in November, Josh felt like he was ready to add a third, also, with one caveat… He wanted minor special needs, nothing major, nothing that would rock our easy family life. I kept scouring the waiting child lists, and our agency started sending us files. 

However, every child that we were drawn to, and every file that our agency sent us had complex CHD. So we prayed, and we prayed, and we looked at files, and we prayed some more. We talked to our cardiologist, and by the time we saw our Paisley’s file, we knew what the long list of heart issues meant… we also knew that she was our daughter. 

She was beyond precious, and we knew we were meant to be her family. Josh said that while he was struggling, trying to come to grips with adding a child to our family who had a terminal diagnosis, and wondering if she was right for our family, he stopped and looked at her picture for a while…then, instead of worrying if she was right for our family, he started thinking about what would be the perfect family for this little girl. He made a mental list of things that she would need, and he realized that we were it, we could give her the things she needed… And that was that!

Paisley’s file stated that she had single atrium, single ventricle, pulmonary artery stenosis, anomalous pulmonary venous drainage, and dextrocardia. She was post Glenn, having received her first surgery in China as an infant.

We brought little Paisley home at the end of September of 2014, and we saw the cardiologist the week after she came home, then we promptly scheduled her first heart catheterization for the beginning of November. She had a hard time recovering from the heart cath… several veins needed to be closed off, and she had a hard time getting rid of fluid. They also found that she had very high pressure in her Glenn, which meant that she would not be a candidate for the Fontan surgery, so they planned to repair a leaky valve to see if that helped the pressure. They scheduled her for surgery in January, to give her time to get healthy, and get her diuretics under control. She ended up back in the hospital the following weekend for edema, and then the week before Thanksgiving, her face started swelling on one side, and she was admitted for dental surgery. Poor thing had to have thirteen teeth removed! After that surgery we had a hard time getting her stable, and she went into heart failure just before Christmas. Her diuretics stopped working, and she started puffing up quickly, and losing proteins.

She was admitted back to Children’s, and they worked hard to get her stable enough for surgery. She was able to go home for two weeks, then it was time for surgery…

They did a valve repair, and they disconnected her pulmonary artery (this is something that normally gets done with the Glenn surgery, but was left intact in China). She came through surgery amazingly well, and we went home just eight days later. 

We have added a few new items to her list of diagnosis, as well. Paisley has heterotaxy syndrome, with asplenia, which means that all of her organs are not where they normally would be, and she has no spleen. Having no spleen means that she will be on antibiotics for the rest of her life, since the spleen helps to filter infections in the blood. We also added TGA to her long list of other heart issues. 

Next for Paisley will be a clinic appointment at the beginning of April where she will have an ECHO, and an EKG again, and from there we will decide when to do her next heart catheterization, and based on that they can decide how to proceed surgery-wise. 
There are still so many unknowns with our baby girl, and we have no idea what the future holds for her, but we know who holds her future, and we know she won’t be alone… she will have her family by her side.

Making the choice to adopt kids with complex heart needs can be stressful and overwhelming. All the unknowns can be scary, and the hospitalizations and surgeries will be taxing. It will stretch your family and your marriage, but… it is also beautiful. It will change your family, and your life, for the better! We have been blessed beyond belief to be their family! Our girls have been through so much in their short lives, but they are so amazing, and they are so much more than their medical diagnosis. They are strong and resilient, and full of joy, and we cannot imagine our lives without having known them. 

Always remember, you are braver than you believe, stronger than you seem, and smarter than you think. ~ A.A. Milne

To read more about our precious little ones, you can visit our blog at www.craftynester.com


LisaE. said...

Those pictures steal your heart. So happy you took a chance and went back for Paisley. Love the picture of the three of them together. Prayers her next cath goes well.

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