slide show

Monday, December 23, 2013

Merry Christmas

Pin It

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!

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

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.

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. 

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. 

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! 

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.

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.

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!

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! 

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! 

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! 

                   From our family to yours,
                        Merry Christmas! 

Pin It

Friday, December 13, 2013

A 5 year old and a thriving wonderful 3 1/2 year old, what a wonderful life!!!

Pin It

I'm sorry it has been over a month since I've updated the blog. I made the careless mistake of storing way way way way way too many photos on my laptop, and yes I do know to put them on an external hard drive and yes Ted... Kim.... I know the lecture was loud and clear this summer and yet still, I was mindless and careless and lackadaisical about it and yes, I ended up with a huge computer mess. I couldn't even open my computer to fix the problem, it was so full that it didn't even have the space to open. Anyway, enough said about that, I've learned my lesson and I'm back up and running!
And talk about running... life is just moving along way too fast. There is so much going on I can barely catch my breath. I'm ready for Christmas but I am not ready for it to be over. I want to enjoy the season for at least another month :) I love everything about December!! 
So the two most important things about this post....
Today our baby, our oldest little, turned 5!
It was a perfect day and tonight when I tucked her in to bed she said that it was her wish to have a really long Birthday and she got her wish. So cute to see her perspective. We opened presents first thing this morning and then headed to school. She had dance this evening and tomorrow morning is her recital so she was high as a kite with excitement and anticipation for that! Then her big sis and brother in law came over and we had cake and used her new pottery wheel that her grandma got her. By the time she went to bed (later than her normal bed time) she felt like she had been celebrating for days! I think the sweetest part of the day was this morning when we gave her her gifts. She had 3 wrapped presents and a few unwrapped surprises in her room to be found after school. Ivy saw the wrapped gifts and immediately ran for them. She went to grab one and Lexi said, "I'm sarwy sweetie, but its my birthday today, these gifts are for me." (yes, she really said sweetie). Ivy made a very sad face and said, but where's my pwesents? Lexi then took one of the three gifts and said, here you go, I only need two, you can have this one. It was precious. And it ended up being the Anna doll from the movie Frozen, the little sister princess. The other boxes were the castle and the Elsa doll. I'm not going to leave out that had the gift Ivy opened been the Elsa doll, I'm certain Lexi would have been asking for it back (She adores princess Elsa the big sister princess), but it was perfect the way it transpired and the day continued in that same perfect way. Two little girls playing together all day long!
The next super important thing is our Ivy update. I know some of you have been worried about the lack of posts. So now that I have my computer back, here is an update on our little Gem.
Back in August Ivy's heart failure number had dropped to an unbelievable only God could do this, all doctors had their jaws on the floor, TWO HUNDRED AND FIFTY! Now I know that number doesn't mean much to most, but trust me, it is crazy low for our girl! By October things were looking so good that they decided to wean her off of her digoxin and she did well with that. In late October we dropped her down to just one dose of lasix a day and she did well with that as well. 3 less syringes of meds made mom and Ivy very excited! Then in November Ivy got a cold and the cold became a terrible cough, breathing difficulties and a very puffy girl. We put her back on the lasix and she had breathing treatments and Prednisone for a week and finally after 2.5 weeks she was well again. We managed by the grace of God to keep her out of the germ infested hospital and she was back to school in time for her Thanksgiving feast! At the very start of this cold, before it had escalated to even a fraction of where it would get at its worse, we had our regular labs done to check for all the normal things they keep a close eye on. They also checked her heart failure number. Well her heart failure number had jumped up to 1950! Her cardiologist (who by the way is the most incredible, humble, caring man) said that he would expect it to go up while her body is battling illness. Going up to almost 2000 is quite a curious jump and we need to watch her closely. An echo revealed all the same things that one would expect from a heart like hers while sick, so the plan was to do another set of lab work in mid December and another Echo after the new year. We did the labs yesterday, I'm still waiting to hear the results. I'm keeping my chin up and my hopes high. She is doing amazing, looks amazing, acts amazing, growing, getting so strong, happy and delightful. We let her try everything, experience everything, savor everything because that's the way we should all live. If they tell me she is having problems again, I will be shocked based on the fact that she acts and looks so good. But I did not go in to this blind or even vision impaired so I'm also well prepared for any tune ups we may need to have along the road. If you could see her, her joy, her ambition, her determination, her spirit, you would agree that this baby girl has got to be just fine! I will keep you posted on the numbers we get as soon as I hear back from her cardiologist. We'd love to see them back down in the hundreds. 
I leave you with a few photos and a huge thanks for your continued love for our family!

Ivy's first Pre-School Christmas Program

And below, Lexi's Pre-School Christmas program

 Lexi's big night, so fun that they each got their own night to shine on the stage.

                               Lexi's class
                               Lexi and Cassidy after the show

 Ivy could not wait to get on that stage. After watching her sister up there the night before, she was ready for her turn! She was waving to everyone from the stage. Hi mommy, its me, Ivy... Hi Daddy, It's me... Ivy!! Just in case we didn't recognize her star like appearance while on the stage haha :) She is a hoot!

Ivy sitting with her class. I know, she looks like someones baby sister got in the picture :) But we think she's just perfect. 

Pin It
Design by Deluxe Designs