Loving life with Lexi & Ivy Joy: Merry Christmas

A recap of 2013

January ~

After a very sudden, but rapid decline in heart function, Ivy was air ambulanced back to Boston Children's. At first they thought her mechanical mitral valve had clotted, after open heart surgery it was discovered to have a piece of loose scar tissue stuck in it as well as clotting. She would need another open heart surgery to replace her mechanical mitral valve with a porcine valve. Poor sweet girl was so sick and so scared. And in true Ivy fashion, she pulled through. God was not done with His miracle yet!

February~

We finally said goodbye to Boston Children's for the last time and headed home just in time to celebrate our sons 14th Birthday.

March~

Ivy made huge strides in her health and seemed to be doing better than ever. We celebrated daddy's birthday and did lots of home physical therapy. Ivy was doing lots of hand held walking, but none on her own yet.

April~

Our youngest big girl turned 17! Our oldest big girl and son in law moved back to Arizona. Ivy started showing signs of heart troubles again and was hospitalized. She was put on Milrinone, and 24/7 oxygen, had a heart cath, and it was determined that it was time to list her for heart transplant.

May~

Ivy got out of the hospital just in time to celebrate her 3rd Birthday! We had a wonderful celebration with very special guests traveling in from New York and Missouri. 48 hours later, we traveled to Lucile Packard Children's for her transplant work up. They put her on a strong regimen for her pulmonary hypertension and she continued 24/7 oxygen as a therapy for the hypertension as well.

June~

School was out and we spent the month enjoying life as a family at home sweet home. Ivy started walking independently and before we knew it, we could hardly remember all the days of her being too weak to do so before!

July~

I loaded up 1 of my big girls, the 2 little girls and the oxygen tank and ventured out to the East Coast for a lovely vacation with a dear friend and her sweet family. It was priceless! Just what we needed to feel normal for a while.

August~

We headed back to Lucile Packard Children's in California for Ivy's heart Cath the final step needed to list her for a heart transplant provided her pulmonary hypertension was lowered enough to be considered a candidate. First stop was our cousin Cindy's wedding. The girls were flower girls and it was a wonderful time!

Next stop, Lucile Packard Children's hospital. We met with the transplant team had lots of tests and then the following morning she went in for her heart cath. It was determined, based on the cath results, that Ivy's pulmonary Hypertension was miraculously near normal now! Her heart function was showing very promising signs of recovery and her overall function was better than we had ever seen it! They took her off of oxygen and gave us the thumbs up to go home and continue healing. Her heart was finally bouncing back, squeezing a little better, responding to all of the medications that she takes! Their words were like a dream.... AT THIS TIME, WE BELEIVE IVY DOES NOT NEED A NEW HEART! THERE IS HOPE FOR HER OWN HEART AND WE REALLY CAN'T EXPLAIN IT! ~ But we can :)~

Rejoicing!! We were indeed rejoicing! And then we discovered that we were discharged not knowing that somewhere in the blood thinning process and her heart catheterization, Ivy had developed a severe brain bleed. After a CT scan revealed the massive bleed and neuro saw her quickly declining she was taken in for an emergency craniotomy. Ivy had so much blood collected that her brain had shifted to the left side. It was possibly the scariest thing I have ever experienced as I felt equipped to handle all the uncertainties of her heart, but knew nothing about what we were now dealing with. I felt so helpless at that moment and wondered how much more this precious child would be handed. How much more this mamas heart and soul could handle.

And God, well, He reminded me that no day is to be taken for granted, not one! No job is too big for Him. He drew me right back to the foot of the cross and reminded me that none of this life is mine or hers and to embrace every gift, even the ones that came in what seemed like hopelessly dreadful packaging!

In pure Ivy fashion, her recovery was nothing shy of miraculous, she was blowing bubbles on her own within an hour of waking and being extubated. She continued to show the doctors and nurses what a fighter she is and while this bleed left me certain I was ready for Jesus to come back and free us from all this suffering, she had other plans. She came back to us stronger and mightier than she ever has. She left her mark at Lucile Packard and we left for home before the end of the month.

September~
Lexi started her last year of pre school and was so happy to do so!

Lots and lots of appointments filled the month! Not only did we have all of the heart follow ups but now we added neurology to the mix! Staples came out, recovery continued, and Ivy rocked every day of it!

October~
It was obvious to everyone that Ivy was like a different child now. She got colds that left her weak, but she didn't end up in the hospital. She was growing, thriving and clearly doing amazing! Both girls had lots of fun dressing up for Halloween and while last year Ivy lay in a hospital bed on Halloween, this year she walked far more than she sat in her stroller!

November~
Monumental month..... Ivy Joy started Pre School! She was cleared to be a normal little girl! We took it slow and still are very very careful, but for the most part she is just one of the Little's! She loves school, loves her teacher, and tells us so all day long. On the 11th we celebrated 4 years home with our precious Lexi Jade!

December~
Lexi Jade turned 5!! Both girls had adorable Christmas performances with pre school. Lexi had her dance recital and was absolutely precious! And to close the year out... Ivy Joy's BNP (heart failure number) is down to 195!!!! The lowest it has ever been... EVER!

Never doubt, never give up, never underestimate the power of the Lord our God!