Merry Christmas

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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! 

                   From our family to yours,

                        Merry Christmas! 

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Discharge Echo

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Before you can even start the process of moving towards a discharge day, you have to pass that DISCHARGE ECHO......
the one that brought me to tears and on my knees in despiration last trip.
The one that left Ivy being whisked to the OR for her 4th Mitral Valve surgery in November.
I feel almost too giddy and excited about the progress Ivy is making, the speed of her recovery, the way she is eating, the fact that she pushed a toy around the ENTIRE 41 bed unit yesterday, legs shaking with exhaustion in the end but when she got to her door she said, AGAIN and then plopped to sitting position exhausted!! How her cardiologists stops by her room and then pops back in just to peek again because he just can't beleive how good she really does look! How her nurses from ICU just can't believe the little girl they are looking at is the same one who came here with a good 5 pounds of excess fluid in her body and the same child that came out of her 5th open heart surgery in 10 months looking so lifeless.
And yet I am shaking with anxiety at the same time because I've done this before. I beleive that Ivy is doing as well as Ivy could possibly do. Left side really looking good. Right side suffering from the right coronary artery issue. We need todays echo to say that the RCA is as good as it can get in its tattered condition. That its hanging on and it is not going to stop her from coming home and living life. That is todays prayer. That the healing hands of our mighty God who made Ivy for all His glory and has brought her from near death so many times, will keep that right side well enough. Well enough to play. Well enough to be smothered with love and affection. Well enough to go to the park and swing on the swings and just be a little girl!! Well enough to learn all about Him and well enough to share her story and bring HOPE to anyone who feels they have none! That is my prayer!

Matthew 19:26
Jesus looked at them and said,
"With man this is impossible, but with God all things are possible." Pin It

The buffet on wheels

Pin It I'm just in awe of what is happening here!

In Ivy's heart. In my heart. In your heart. In hearts around the world. In AWE!

With an x-ray that showed no change in the air pockets from yesterday, the doctors took a close look at Ivy Joy today. No signs of distress. No change in sats. Eating like a teenage boy (non stop), awake and giving her barbie a bath in the wash tub that was supposed to be for her bath.... this little girl is amazing! She has been through so much. When the doctors doing rounds walk to her bedside to comment on her bow and her snacks and so forth she puts her head down as if they will not longer see her. I tell her to remember her manners and at least say hi. She very discreetly opens and closes her fingers without lifting her hand just to humor me. But when they walk away, head still pointed down, she says the loudest, BYE... you've ever heard from her tiny voice and they all smile and wave. She is so fierce, yet so frightened at what might be ahead.

And you know how we moms are. We get these hunches when we know somethings not quite right. And I have had way too many of  those hunches. And I am just so happy happy happy, that my hunch right now is that ALL IS WELL!!

My little girl feels good! So very good!

It took all morning, but at 2:30 it was decided that Ivy was more than ready to move to the floor! Out of ICU! And once I got her in that Go Cart... She was not getting out! I promised her it was just for rides to see babies and go out to eat! Well, that was that! Mention food..... DEAL SEALED!

While we were cruising the halls we had a special delivery from some sweet bloggy friends in Texas! Hand delivered and excitedly opened by a present loving toddler! It gets no better than this for Miss Ivy. Food Food Food!!!! She loaded it all in to her cart and we were not allowed to remove it! 

 Take a look at this spread! Fit for a princess indeed! Thank you Shari and Jane! We both felt so very loved by you today!!

Tonight the sparkle was back in Ivy's eyes! She is so much more relaxed. We have our tiny shared room now. Our room mate is an adorable 2 month old girl. Ivy had some Dora time in the room but for the most part, we spent 7 hours out walking the halls and feasting in her all you can eat, buffet on wheels. She is ready to go home and really wants no part of her new room. We take baby steps with her. What she is afraid of today, she has proven to be fearless of tomorrow! Trust 

Dr Baird will be making the decision on what to do with the chest tube tomorrow. And we continue to pray that the air pockets are smaller tomorrow. Better yet, GONE! 

We continue to work on getting Ivy's IVR therapeutic so we can get her off this Heparin pump. She starts PT here tomorrow. And we will likely be found strolling the halls with our Buffet on wheels the rest of the day! My sweet girl has earned every second of these special days! She can absolutely have whatever she wants! We will fix bad habits when we get home! Until then, the world is yours Ivy Joy. We love you baby!

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Ask, and you shall receive!

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Anything you ask for in prayer!

 As you can see, she has lost quite a few accessories in one short morning! What a day it has been!!!
I walked in to her room as usual this morning, but later than normal. I overslept and did not get to her room until 8am.
I did what I always do. Dropped my bag off. Washed my hands. Turned on the lights. Walked to the bed and kissed her head, held her hands and said good morning tiny miracle!
And she opened her eyes!! She looked at me for a few seconds, then around the room, then back at me. I began to talk to her. She shook her head NO to everything I said. You've been such a sleepy girl. NO
You are my brave little hero. NO
I love you so much and I missed you so much. NO
Laughing, crying, just overjoyed, I squeezed my tiny little miracle as long as I could and called the nurse.
Things began to move quickly. Ivy pulled off the Bi Pap mask. She was very graceful about it. It was big, annoying and oh so unsightly, so she just carefully removed it. Standing in awe as the doctors and other nurses came around to see Sleeping beauty had come back to us, her oxygen saturation only dropped to the high 80's, low 90's. So Respiratory came and skipped right passed the High Flow one would normally step down to, and went right to regular oxygen. They started her at 2 liters and then wanted to see just how amazing she was, dropped it to 1 liter and she remained at 99-100% saturation! Cheers began and cheers continue!!!
Next she had some lines removed. She had not needed them for a while but since no one really understood why she still was not waking up, they left them in, just in case. Out they came!!
She asked for water so we tried some. She drank way too much way too fast and choked a little. She asked for more so we took it slower. I asked her if she wanted to eat and she nodded NO.
She had a bath and got fresh clothes and even went for a ride in the go cart. She was not impressed with her walk, or all the people saying hello or even her mommy to be honest. She is not happy about all the junk on her arms and face and she is still in quite a fog. She knows what is going on basically, but she seems very dizzy still and very very tired obviously. We had a good amount of awake time, took a nap and then mommy got hold her baby girl!!

She had been rejecting me all day (totally a normal thing) and nodding NO when asked if she wanted me to hold her. But suddenly she decided to forgive me for all of this and she gave me some holding time. 

We ordered her some mac n cheese upon her request and she ate a great amount of it. She usually takes forever to chew and eat but today she just gobbled it up! She has a working heart now!! Lot's of things will come easier to her now!

 Her little body is so tiny and her legs have hanging skin from all the lack of muscle and fat. I have no doubt that will be a thing of the past in no time!~

The fluffy socks were requested by the nurses who always stop in her room to see her. We were happy to oblige!

 This picture gives you an idea of just what a bitty thing she is. My hand size in gloves is small... He feet are just adorable! Sorry for all the pictures but remember this is my documentation of the life of the girls and all that Ivy has been through and overcome. I think she should see this some day :)

It was a very busy morning so mommy put the do not disturb sign on the door and closed it! Leave this baby alone!

Thank you Team Ivy for asking!!! We indeed have received!!

Thank you Father in heaven for this family I am so unworthy of.  Thank you for carrying me through every day of this beautiful journey! Amen Pin It