Joy

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 When I read stories about children all over the world, praying for little Ivy. Grandmas and grandpas calling their adult children for an Ivy update. People going through their own difficult journeys and remembering Ivy to help them stay strong and press on. So many stories, all saved for our little girl to read herself some day. I can't help but well up and give thanks, even though the road for us, for her, has been anything but easy. 
It is a Joy to share our baby girl. To share her strength, her determination, her zest, her love for life, her adorable grin, her journey. 
We are wearing our joy shirts today, celebrating another great cardiology appointment. Ivy will have her next heart catheterization in California in February. Until then, we are just going to continue to love every second and spread our joy!!! 
Life is good! God is great! We are blessed!
We love you all!

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He gives us peace

Pin It Its been a pretty quiet day here. 
Quiet is good on a day like today. 
Bryan and I have made it a point to rejoice every single baby step of news that has come our way today as well as the miraculous news we put aside yesterday due to fear that overtook us. We traded our joy for sorrow. Never a good choice, but one that happens quite spontaneously when lives are shaken. So today, we traded our sorrow for joy! And it has been a much better day!
We avoided the operating room today by pumping loads of plasma in our baby girl. And bringing her INR up to a level that would be considered normal for you or I. And then we added the vitamin K. A scary thing for someone with a heart like Ivy's. But we had to focus on what could take her life away from us. Her bleed. It was that bad. And the bleeding was still really significant this morning. And we asked you all to pray as we trusted the one who made her. And we have faith that tomorrow her CT scan will reveal no more active bleeding. 

Our baby steps today are worthy of praise too.
Ivy does wake up when lifted from the drugs and she does act completely appropriate. She continues to have full use of both sides of her body and she answers questions by nodding yes and no. She squeezes my finger so tight and does the fastest head turn you've ever seen when she is looking one way and hears my voice from the other side. She is getting a little fluid overloaded, she's had an awful lot of plasma today. We are also using vitamin K. The doctors from both the heart team and neurology  have agreed that we need to put all focus on her head bleed right now even though we have a high risk of her mitral valve clotting with all this plasma and now vitamin K, (what causes your blood to clot)
We are holding on to hope that just as the Lord has given Ivy's old heart a second chance, He too will keep it strong as we focus on her brain and this bleed. 
She continues to be ventilated and sedated and showing us her will to get through this by fighting her sedation. She is thirsty! And she wants to wake up! Please keep that prayer circle going! 

It has been such a blessing to have my wonderful husband by my side. Being closer to home has us surrounded with family. We are so blessed to have my mom caring for Lexi.  And to have family close enough to visit when Little Ivy is feeling better. So tonight we rejoice in the baby steps. And we humbly thank you all for helping us get through this day with your kind words and fervent prayers for Ivy Joy. Our little Tiger Baby.

                  Time to go hat shopping! 











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Next steps

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 For those of you who are not on Facebook or do not already know this
Ivy was admitted in to the hospital on Thursday after I suspected something more was going on with her heart.
After an echo revealed diminishing right and left ventricular function and hardly any squeeze at all coming from her heart, we headed to our room that awaited us at our local Children's Hospital. 
The heart shows all of her repairs are working as they should be. So why the sudden drop in our sweet baby's heart function? The suspicion is her Right Coronary Artery that has been hindering us since April of last year... And the secondary pulmonary hypertension that is a direct result of the issue that occurred with the right coronary artery and the time spent not knowing it was stitched closed. We need to do a heart cath to verify these suspicions. But we need her heart stronger for a heart cath. 
So Ivy is on Milrione and IV diuretics, being closely monitored, waiting for a day next week when she will get this heart Cath.
Our next step is sad but obvious. The only way to get a new coronary artery, is to get a new heart.
We are choosing to take a little blog break at this time. We have so much to pray, think, and learn about. We have very important life changing decisions to make as far as where this will happen and how we will go about it. Obviously there will be a lot of factors out of our control since we don't even know when or if this gift of life will be given to her. 
We believe with all of our hearts that this is still Gods perfect plan and we will get through it whatever that plan is. God has blessed Ivy with the strength and bravery of a Lion and the gentle soul of a lamb. She is like no other child I have ever met in so many ways. She has been through more than any one should ever have to. And yet here she sits beside me, heart barely squeezing, with round cheeks and a belly full of mashed potatoes, broccoli and assorted nuts, a box of fries in one hand and her blankie in the other, telling Swiper, No Swiping, as she watches Dora. She says please and thank you to everyone coming in and out of her room and shares her snacks with whoever asks nicely. She tells her visitors she loves them right back when they leave and she tells me thank you for the simplest things like fixing her pillow, changing her diaper, throwing away her trash. She scolds me for turning the lights off and shutting her door but says, It's ok mommy, It was just an accident I forgive you, when I spilled water all over this morning. She has a fight in her that no one can stop and when God says it is her time to come home, His will be done, until then, she continues to run her race and we continue to try our best to keep up with her and stand by her side. She is much stronger than us! Much braver than us! And much wiser than us! 
We thank you for your prayers and support during this time. We appreciate your comments of encouragement and read every single one. We are still holding on to the hope that she will spend her birthday at home (just as we were praying last year here in this same hospital..) with her family and friends and all who love her! 
You can find Ivy's Facebook page by searching Mission to a Million on Facebook. We may do small updates there as we see the need to update. 
Ivy's Birthday is May 6th, her little party is planned for May 4th. We are praying that she can celebrate her 3rd year and the gift of her life at HOME! We are praying that there is a perfect heart out there that God has intended to use for two children instead of one. To Him be the Glory, for He loves her So!

                                          

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The practice egg hunt

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And as hard as we tried to get Ivy to join in on the hunt...

             She was way to interested in peeling the    eggs!! And wow is she good at it.  

        She peeled and peeled, for over an hour!

Wishing you and yours the most meaningful Easter! May it be filled with Joy and Gratitude. For through His death, burial, and resurrection, Jesus paid the penalty for sin. He has purchased for all who believe in Him, ETERNAL LIFE in Christ Jesus. 

What a beautiful gift!

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Jeremiah 29:11

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For I know the plans I have for you "declares the Lord," plans to prosper you and not harm you, plans to give you hope and a future. 

Love bug thought this was the pose of the day?

Whatever? She's a doll, belly showing or not!

We had our appointment with the cardiologist on 

Thursday as you know, and we got the results 

from the blood work done on Monday.

The results of her electrolytes were delightful! For 

the first time ever Ivy's electrolytes (potassium, 

sodium and Magnesium) were within NORMAL 

(or almost normal) range!!! This is very huge for a 

child on so many diuretics for her heart. Blessed!

But the biggest part of the blood test was the BNP.

BNP is a substance secreted from the ventricles or 

lower chambers of the heart in response to changes 

in pressure that occur when heart failure develops 

or worsens. The level of BNP in the blood 

increases when heart failure symptoms worsen and 

decreases when the heart failure condition is 

stable. The BNP level in a person with heart 

failure, even someone whose condition is stable, is 

higher than a person with normal heart function.

A BNP level below 100 pg/ml indicates no heart 

failure.

100-300 pg/ml suggests heart failure is present.

100 to 300 pg/ml indicates mild heart failure.

Over 300 pg/ml would indicate moderate heart 

failure.

600 pg/ml would indicate severe heart failure.

Ivy's BNP left us all speechless.

3800 pg/ml

this in not a typo

What on earth? Who on earth could be there and 

look like this! Her and that big old donut! Our 

fighter! Mini sized miracle. Determined and 

mighty!

Only a super star!

Only God! He knows! He is the only one who 

knows. We are just waiting on Him. We trust Him, 

we love Him, we believe He is in control and He 

has a plan better than we could ever imagine. He 

clearly is protecting our baby girl. She is nothing 

short of unbelievable and it is all because of one 

miracle after the other. Yes, lots of pain and 

suffering, yes, a few big scars, but all this and look 

at her! She is a happy, funny, loveable, adorable 

toddler living and loving life! 

Her echo shows some moderate to severe tricuspid 

valve regurgitation. This could still be from those 

high pressures in her lungs. She was in the 90's for 

pulmonary hypertension 3 weeks ago and she is 

down to the 70's today. So still severe, but 

trending down and we like that a whole lot! We 

have consulted with our Boston team. They are 

blown away too. Her repairs are working well. Her 

heart may just not know what to do with all of this 

newness yet? But honestly, we really don't know at 

this point. An MRI would help... but she has a pacemaker so we can NOT do an MRI. They do 

not want to cath her unless it is absolutely 

necessary and right now they don't even know 

what they would be looking for so there is no plan 

to order that just yet. The less invasive we can be 

while she heals, the better off she will be. She has 

been through so much already. We will continue 

to do echo's and check BNP regularly.

My hope is that everything will trend down in 

Gods timing. I believe in that. It may seem crazy 

but my heart is happy. We have been given more 

than our hearts could ever have fathomed and I 

know God's not done! My life is so RICH! And I 

would never want another. This road we are 

traveling is different than the road we had 

envisioned. But this road is so beautiful and has 

left us so completely full! 

And we press on! 

With Joy!

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The Patience Of A 4 Year Old

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 Lexi Jade has got to be the most patient, good natured little girl I have ever met. There are days where I feel like all I do is tell her to wait for something else. Medicine time consumes me for at least an hour every morning. She asks for juice, I say I'm getting it. 10 minutes later she asks if its ready yet, I say oh no, I forgot, let me get it! 10 minutes later she asks where I put it, oh sweetie let me make it right now as we speak and bam, 30 minutes later, we have juice! The process starts all over again in the evening. She is usually dancing while she waits... or riding her balance bike through the house. Never a sigh or complaint, just happy and joyful! There are days when I feel spread so thin and I know she has once again gotten the short end of the stick and yet every day, she makes me feel like the best mom in the world. 

She is growing up right before my eyes! 

She loves school and dance and riding her bike more than any other activity. She would be fine doing just those 3 things every day! 

 She has the greatest giggle I have ever heard and when you hear it you can't help but giggle too.

 She loves nature, bugs and creepy crawly things don't scare her. She got a Hermit Crab recently, (first pet) and she holds it like its a toy. No worries about it pinching or crawling or anything else... just calm as can be. The crab escaped the cage one night and was lost for 2 days!!! Last night it appeared in the kitchen at around midnight! So glad!!! Can you imagine?? YUCK

 It's been a very long year and there have been more changes and more adjustments than I ever thought her little self could handle. But she has handled it like an absolute star! 

The only thing we continue to work on is her fear of me leaving. She needs to know where I am at all times. If I leave the room and she suddenly doesn't see me, she panics. Crying big and out loud instantly. We are getting close to being over it. The rule is to call out for me in the 4 main areas of the house one at a time. I try to just tell her every move I make so that there is no anxiety but if I should forget, she has been very good lately about following the search rule. I tell her several times a day that I will never ever ever leave her and that if Ivy should have to go back to the hospital for something, that I will be bringing her with me no matter what. She has done amazing but she has clearly had all she can handle.  

God made our little girl for our family! We are so in love with our Lexi Jade. (Auntie Kim and Quincie, I know you are missing her... these pics are for you)

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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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update and praise!!!

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Update

Ivy's chest is closed and looks sooooo great!!!!!!!

Her numbers remain fabulous!!!!

She is going to stay asleep and comfy until this evening.

We expect she will slowly come back to us tomorrow.

Ventilator out by Thursday night?

Her heart is already smaller, still big, but smaller!

Her liver is already functioning twice as good as before!!! 

Thank you God, bye bye heart failure!!!

Her labs and gasses all came back perfect!! 

Oh Lord, you hear the desires of our hearts and every day, you provide!

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January 6, 2013

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My darling Ivy. I sat here and watched you
as you slept in your hospital bed tonight 
for at least an hour straight. 
Confused by what is happening, 
worried beyond measure, 
without words to share with all the people that have been praying for you. And during 
this quiet time, I was reminded, 
God's love is being manifested 
in and through this time of suffering. 
And just as He promises you, 
God is going to take it away. 
We may not know when, but He 
is going to take it away and He 
is going to reward you in a way 
that will make all of your suffering 
seem as though it was not suffering. 
And He is going to give you everything 
you need for ever and ever—
millions and millions of years—
and you are going to be as happy 
as you can possibly be.

Mommy finds comfort in Revelation 21, 
"All crying and mourning and pain 
will be no more, for the former things 
have passed away." 
Mommy finds hope in your eyes, in your 
smile, in your heart!

As I watched you sleep tonight, 
I was thinking about how extra 
special you are. The way you talk, 
your little voice, 
your sweet nature 
and concern for everyone. 
You captivate everyone 
who meets you and you leave 
your handprints on their hearts. 
It reminded me how God builds amazing 
character, faith, love and depth out of suffering.  Some of the deepest, wisest, 
most loving, most patient, most 
ministering people I know, are 
the people who have walked the toughest journeys and suffered through 
the hardest times.
And so I am ending my post to you 
with a giant I LOVE YOU FOREVER! 
And my continued promise, 
to go to the ends of the earth 
for you and whatever your journey 
has in store. I will never 
leave your side, daddy and I 
will never leave your side, 
we love you to the depths 
of the universe and every 
moment with you is a moment 
we could never have had 
without our Ivy Joy! 

Friends our little peanut has been in the hospital since 

Thursday. We were watching her closely since the 

previous weekend as she was seeming to be a little 

puffy and had a bit of a cough. There was a lot 

of sleeping going on and it appeared that she had 

perhaps caught a little virus. She was eating and 

drinking and all of that, but she was tired and 

coughing a little. On Thursday morning she was 

sitting in her highchair and she kind of arched her back 

and stayed in that position. 

I pulled her out of her highchair and noticed she 

did not change her position and her eyes were looking 

to one side. I called her name over and over and she 

didn't respond. I told Cassidy to call 911, she was 

having a seizure. This was my first experience with 

a seizure and by the Grace of God it was very short, 

about 15 seconds total. 

While on the phone with the dispatcher she straightened 

right up and asked to go for a walk in her stroller! 

I still asked them to come out and they did. 

All was checked out, she looked normal, 

they left and we made calls to the cardiologist 

and her pediatrician. I suspected it was related 

to her electrolytes. It is not uncommon for kids 

on diuretics to be depleted of them, of potassium 

and sodium. Once we got in with the pediatrician 

it was decided to take Ivy straight to the ICU 

to be admitted and get some labs drawn. 

She did come back having low sodium so it is being 

suspected that this is what caused the little seizure. 

But in the mean time it was also suspected that 

this little cough that is getting progressively worse 

is being caused by blood backing up in to the lungs. 

And this would be really bad. And her echo revealed 

that her pressures are dangerously high. 

And something is going on with the right side 

of her heart as it has almost no squeeze... 

And so with great hesitation in typing this 

because it makes it harder to deny this reality I so 

want to wish is just a bad dream, 

Ivy will be having a Heart Catheterization on Monday 

to take a look around and see what exactly 

is going on with her heart. We know there is a 

problem but we don't know what. 

I asked the nurse tonight if there could be a problem 

with a mechanical valve, could you 

have regurge with a mechanical valve, 

I thought they were fool proof? She said yes, 

its not the norm, but it can happen. 

Seems to always be the case for my little love, 

not the norm but it can happen and then it does. 

It could also be her tricuspid valve. 

Both these valves are on the left and control 

the right side.. I don't know, Im going only off of 

small tidbits that are being thrown around 

for the time being. For those wondering, yes, 

I have been in very close 

communication with our Boston team 

since coming home and they are aware of everything 

that is going on with Ivy.  If we need to take 

next steps, those steps will indeed be taken

back in Boston.

So the facts I have are that she is very sick, 

she has a gray color.  Her face is very sunk 

in tonight but she still has significant 

swelling in her legs, feet, and belly. 

We know its the right side of her heart and 

we know her pressures are dangerously high. 

We know something is wrong and we 

know we need prayers without ceasing once again.  

Our little girl has been through enough, 

she needs a break, she is tired! She is exhausted! 

Please share our request. Please ask others to pray. 

On Blogs, Facebook, twitter, instagram, 

prayer circles, who ever you feel led to share it with! 

Please please please, storm the 

gates of heaven on Ivy's behalf, that she would be able to 

stop this constant suffering and 

pain and sorrow would be no more! 

Thank you

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