A little love

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Today, Ivy has decided to rest. She was up for 10 hours straight after being extubated yesterday. Not because she was wired and feeling energetic, but because she did not want to miss a thing. If something else was going to happen to her.. she was not about to sleep through it again! So around 11pm she closed her eyes for the first time all day. But she made sure to wake up every 30 minutes or so. She'd ask her amazing nurse Lesley what she was doing. Why she was doing that. She used her little potty (this girl amazes us how even in her current condition, she uses her potty even in the middle of the night) she drank lots of her beloved water and she was content. This morning she is resting up! She slept until about 1pm, woke up to go potty and is now trying to have some soft food. She really isn't interested in food yet. Such an odd thought for our little muncher! Her last drain on her head was removed this morning. She will get her Arterial line out later today and possibly the NG tube they were using for meds. By tomorrow we should be moving over to the non intensive care cardiac floor. 
We spoke with neurologists in more depth today. Probably because they can see now that she is acting 100% normal. We were told that the extremty of her bleed was very impressive and that the brain was so tight that they could bounce a quarter off of it before releasing the blood. Not good!!! So once again we praise God for getting Ivy through in miraculous ways! Today her right eye is swollen shut, and her right side of face and head are very puffy. Normal, but doesn't look too comfortable. She shines like a super star regardless. She keeps asking me why all the other babies are crying. I tell her because its not much fun here. The nurse tells her because they just aren't Ivy Joy. Whatever the case, I pray for all the friends as she calls them, sharing this pod with us and that all of them are home in their own beds soon! Pin It

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

Quiet, shhh

Pin It Just as I prayed for!!! 
It has been a quiet and completely uneventful day here in Room 9!! No activity whatsoever! So quiet and peaceful that I actually took a 1.5 hour power nap this afternoon, ordered by my fabulous nurses!!! 
Ivy's little heart is doing sensational. She is showing the doctors her determination and strong will to live once again! Both her doctors and her nurses say that there is not one thing they could expect to be better at this point! Woo hoo baby girl!!
So Im keeping it short today. Just wanted you all to know how ~our~ girl is doing. This village of prayer warriors really has become our special little big family!

Ivy will remain paralyzed and sedated until her chest gets closed. Dr Baird will not be at the hospital tomorrow and he wants to be the one to close it so that will happen first thing Tuesday morning. After that, it will be just a few more days of slowly waking her up and as soon as she is awake enough to breath, we will get that ventilator out and start our road to recovery!! I can hardly wait!!!!!

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Surgery tomorrow at 7am

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I absolutely can not wait to see this smile again!

Can you? It's contagious! 

And this sassy face?? Oh ya!

 She is readied up! Is that even a word? 

She has 3 IV's (they go bad quickly so better to get them while she is sedated) A picc line, her Art line and her IJ.  

                                               
                            We've been busy!

 Not the kind of busy we'd like to be, but ready we are!

Thank you for being patient today. Ivy and I waited patiently all day for surgery and found out around 5pm that it would not happen until tomorrow. A good nights rest for her surgeon was Gods plan all along. Mommy on the other hand had coffee at 4pm gearing up for the long night and might just be having trouble sleeping now. 

Thank you Abbey, Olivia, and Sophia for checking in on us every single day and loving our girls to pieces!! 

Thank you Annie Kate for your prayers today ~Fors God to makes Iby alls better berry soon!~
 Love you sweet girl!

Thank you for being on your knees for our girl today, regardless of the time and day, God hears our prayers and knows our hearts! 


Thank you to the absolutely amazing 
Minnesota  Team of Tweens 
that some how raised 400 dollars in the rain, in the dark, out of nowhere.... for Ivy today!  A total surprise to me and everyone I think!  The heart these girls have is just the most beautiful thing!!

Thank you Jamie, who I have never even met, who posted today that she is sewing her way to Valentines Day (our heart baby's Forever Family Day) and donating 25% to Ivy and her very expensive Air Ambulance ride to Boston! What a blessing you are Jamie!! https://www.facebook.com/KenzieNoelleDesigns?ref=stream

And thank you, to all of you, for praying circles around our little girl TOMORROW AT 7AM EST
All day, any time, let us flood the gates of heaven once again. 

Let us NOT be weary, we are full of JOY
Ivy has another chance, and for that we give thanks!!!

Put your shirts on TEAM! 

We've got to get this little girl healthy. 
She wants to play in the sand, chase a puppy, swing on a swing, ride a trike, meet Mickey Mouse, jump on a trampoline, make a mess when mommy's not looking, and all the other things that toddlers do! Another chance! Hope! Joy! Life!

Dear Lord,
This isn't easy, but tomorrow I must entrust my Hangzhou Princess in to the loving hands of her Surgeon once again 
Guide his hands please 
Fix every problem, address even the smallest concerns and let Ivy go on and then off of bypass easily 
Give me the strength and the patience to wait, and wait 
Give me the grace to trust 
Bring Ivy back to us healed, stronger than ever, alive and ready to tell her story 
We thank you for using us in ways we never imagined 
We thank you for using her in ways that are utterly amazing 
Thank you for equipping us with the strength and the armor to get through all of this
We are tired now 
We are ready to rest 
We love you always
Amen Pin It

ramblings from room 9

Pin It I was not going to post until tonight after Ivy was out of the cath lab. But sitting here with anticipation for what I pray will bring Hope, has left me with a need to ramble. Girls are like that. Or at least this girl is! My sweet husband is home with the precious family holding on to the same hope. And from afar, I feel so very lucky to be the family that we are. I was telling my girls earlier, that while I would not wish what we are going through on anyone, I am so grateful for who we all have become because of it. For I am sure that it for many, it feels good to be able to say, "we are so blessed by 3 healthy kids and a wonderful life and everything is just so perfect", but honestly, what would you ever gain? We have gained compassion and strength. We are enveloped in our faith and our family is closer than ever. My kids have a better relationship with their dad and their Father in heaven. We lean on each other better now. We are not afraid to ask each other for help. We find joy for all things, we know how to find joy in something as simple as a wet diaper! We know what it is like to miss each other desperately and we appreciate every moment differently now. We have seen suffering, real suffering, and we have seen pain that would break your heart. We know what love looks like in a whole new way, and no, we would never want to have life any other way. Do we wish that it was not this way? Of course, we are human, we love our darling little Ivy, we want her to be given no more of this suffering!! We beg God for this daily! But sometimes God answers our prayers differently than we expected. But he still answers. And this is our life, our family, our orchestrated by God time on earth. And at this time it doesn't involve bells and whistles, it involves a whole lot of faith, a whole lot of trust, a whole lot of hope, and a mountain of LOVE!!

Ivy Update
Ivy is in heart failure again and the large belly issues she has been dealing with is likely a result of that. The right and left ventricles have a lower function than she has ever seen. Her status was labeled critical on the consent form I just signed for the anesthesiologist due to the low cardiac function of her heart right now. She was ventilated this morning around 9am. They are performing a TEE Echo cardiogram (echo through the throat) and a heart catheterization as we speak. They are looking at the mitral valve and the right coronary artery. If there is anything they can do for the mitral valve they would need to do open heart surgery tomorrow and her surgeon is prepared for that. If there is anything they can do for the coronary artery they will do so in the cath lab today. I may update later tonight via Diana if she is still awake at that time and willing. 

Many of you have been texting emailing and FB messaging me about being here alone. I am not alone. I am wrapped in the loving arms of our father and surrounded so graciously by all of your prayers. I have a loving husband at home making sure our kids get the closest thing to normal while we go through this valley. And there is nothing that makes it easier to focus on Ivy and what we must face next through this valley than knowing all is well with the other half of my heart! We also need to remember that between the trip to China, the long PCH stay all the shorter PCH stays and the long Boston stay and a few more short PCH stays and now another Boston stay all in the course of 10 months........ My husband HAS to work so we can pay for Ivy's Cool Ranch Doritos my friends! So please don't worry about me. I am blessed with some very sweet new friends and old friends who would all be here in the drop of a hat if I just asked. And when the time comes, when I feel I am ready and the time is right, I will indeed make those calls. But for now, I am most calm and most comfortable, just being here alone. I can focus on Ivy, cling closely to God and have ZERO distractions! I am sure that all of you praying for peace for me has been a prayer God has not taken lightly. 
Our family is so blessed by my mom who will once again be flying in to help care for the crew (mostly Little Lexi) so that Daddy can go to work. After all, our hope is that Ivy is home eating her chips on her beloved couch in no time at all!!!

I asked for strength 
and God gave me difficulties and made me strong
I asked for wisdom 
and God gave me problems to solve
I asked for prosperity 
and God gave me the strength to work
I asked for courage 
and God gave me dangers to overcome
I asked for patience 
and God placed me in situations where I was forced to wait on Him
I asked for Love 
and God gave me troubled people to help
I asked for favors 
and God gave me opportunities
I received nothing I wanted and received everything I needed.
My prayers have all been answered. Pin It

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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