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Friday, September 28, 2012

Under Construction

Pin It Hold tight friends,
The blog is under construction and lots of things are still being changed and added.
The new name will be ~Joy in all things~ 1 Thessalonians 5:16-18
I love this verse because it has taught me how to live my life this past year. Finding joy in all things! And it is so freeing! It is my promise to live this way always, and I know it will be what gets me through the weeks ahead, in Boston.
Im adding a few (ok you know me and FEW don't go together when it comes to pictures) cute shots of Wednesday nights fundraiser for Team Ivy! It was an incredible night!
Friends gathered from 4-10 at Swirl It, self serve frozen yogurt to love on and bless our family and especially our precious Ivy Joy!

We planned on having the girls there from 5-7 but ended up lasting until 9:30!!! The girls were literally in the arms of loving friends all night. It was quite relaxing actually!!!







Thank you to everyone who came out and loved on our family. Thank you Chris for putting this together.

                                     Thank you all who spread the word! Thank you!!!

















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Wednesday, September 26, 2012

Here we go!

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 The tentative dates are now final!!!
Sedated Echo, blood work, chest x ray, and lots of other testing will happen the 16th of October.
October 17th Ivy will have a heart Cath.
October 19th is her open heart surgery.

It has been an amazing few days! Amazing!!

God lives right smack in the middle of how we show love to one another! And I am humbled to my knees again, grateful beyond words, that He has placed me as the recipient of this love again!

On Friday, the MLG's For Jesus (Minnesota Lemonade Girls) a huge part of the Team Ivy Club, were at it again! Another lemonade stand and a Team Ivy party where the sweet girls made Team Ivy T-shirts and prayed for our Ivy Joy!

On Saturday at 10am, Angel showed up at my door. I refer to this person as Angel because Angel prefers to remain unmentioned.  But Angel is a huge part of Ivy Joys story so I hope Angel doesn't mind. Anyway, Angel appeared with Angels computer and Angel used a huge collection of points that Angel had been saving for a very long time, to purchase airline tickets for our family to go to Boston! Angel is a wonderful friend. Angel loves the Lord big and out loud! Angel loves our kids! We love you Angel!


And then!!!! My friend Jill, who went to China with me used her points to get Ivy and Quincie to Boston! Those were the 2 tickets we did not get Saturday morning as we were hoping Ivy would be able to sit on my lap since she is only 15 pounds and super fragile. The airline said, then put her in a carseat. Well ok, we will. Thank you Jill for making that so simple, I know that having a carseat for that long flight is going to be so appreciated! Your squishy faced love bug has some big kisses for you!!


On Monday we got some absolutely incredible mail. A check from a mom of a precious China sweetie with a check from their unused fundraising proceeds. Seriously? Yes, seriously!!! Thank you Lindsey!! Thank you Burror family! The girls love their cards and their clip boards!!! We have had to lock them up because they want to use all the stickers now!

On Tuesday my friend Chris who is the one who organized out Swirl It fundraiser tonight and the Garage sale next week, took Ivy for the morning. She had her house set up like a princess was coming to stay!!! She gave me a little one on one time with Lexi that was so needed and so appreciated! Ivy had the whole family eating out of her hand and they got to see what a pistol my tiny miracle is!!! I bet you needed a nap after we left Chris!!!! Ivy was asleep before we even got out of the neighborhood! I love you Hart Girls!!!





And finally, insurance.
We do not have final dollars yet. We were told, what will likely happen is our deductible will double and start back at zero. Since it is out of network. After that we would owe a percentage of her ongoing expenses. Not sure if it is 25% or what. This is the purpose of the fundraising. Because obviously her deductible will be due on day one due to the extent of what we are about to endure. We can handle this.
I trust the One who made Ivy, who got Ivy home, and who promises to love and care for her always! Really at peace knowing that this is where Ivy's hope for health really begins. And finally, we are here! Her life is more valuable than any thing we could ever buy, any place we could ever travel! We have EVERYTHING!!! How Could we ever ask for more? We are immeasurably Blessed!!!!

So stand fast in the Lord, beloved. We can only stand fast when we are in the Lord, any other place is not a secure place to stand. Don't you just love Philippians!


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Monday, September 17, 2012

afternoon update

Pin It As promised XXO














Is she not just the life of the party?? Just you wait till she's all fixed up! OH MY!

I spoke with the gal from Boston who is handling things there and she informed me that they have been working on scheduling for a week and have still not confirmed the date. She said that until they have a date they can not move forward with insurance??? So I can stop sweating at least for today? Ughhh! I was told that they need the entire team to confirm all being there for Ivy on these certain dates and they are still awaiting a few confirmations. So we have a tentative date.... But it is ONLY tentative and we were told NOT to plan anything yet. The possible dates are Cardiology appointment, labs and so forth on October 16th. Heart Cath on the 17th. Open Heart Surgery on the 19th. I have no idea when she would actually be admitted or any of those details. Sounds too stressful to even ponder on at the moment. I really just want them to admit her, do the heart cath, do the surgery the next morning. That would make it so much easier on her rather than dragging it in to a week long miserable time for her when she could just be on the road to recovery. I know I know..... be calm and carry on~ blah! Hey I'm mommy, Ive gotta have my say! Hugs and Thanks to all of you. I was told we should have set plans by Friday. I sure do appreciate all your continued prayers!!  















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Beautiful things

Pin It No word from Boston yet.
 I admit it, I'm sweating a little.. 
I just want to hear something, anything. Is my insurance not coming through? Fighting it? What is going on?? 
I'm going to call and check in at around 3 Boston time today. Hoping for at least an update. 

Ivy is doing well. The wall I was expecting her to hit soon, never happened! Last night she stood without a hand and took about 3 steps. She was so proud! She is so steady and graceful in her gate, she is just so so cautious and terrified! But let me tell you, little miss stinker pants is going to run when she gets this. She is getting CRAZY!!! She will no doubt be the life of the party, it's just her little personality, it is so funny and so darn cute! 

I have to tell you all about a few little surprises and upcoming events that have absolutely blessed the socks off of us!! 

After my last post I was contacted by a friend who contacted another bloggy friend and to make a long story short, some beautiful and kind woman who happens to be a graphic designer offered to re do my blog. So as I type this, there is a fresh new blog with a brand new name in the works. I think the name and the look is absolutely perfect for the season we are in and the days and years that follow. I can't wait to see it LIVE.

And, as if that was not enough,

Yesterday morning I received a text from my sweet friend Diana with this picture.
These 4 amazing girls decided to have a lemonade stand in Ivy's behalf. I was so touched by this sweet group of girls and their desire to be the hands and feet of our Father. 
Many hours later, I'm guessing they worked all day, I received this photo
With this letter from Ainsley, the beauty with the adorable glasses.


Dear Mary,

Today my friends and I had a lemonade stand for Ivy.  We had pictures of her and we told
people about her.  So many were touched by her amazing story!  When we ran out of lemonade we just started asking people for donations!
They were happy to help!   One of my friends little sisters pitched in $80 that she had collected with her friends for "Feed my starving children."   Instead they decided to give the money that they raised to Ivy!  We have lots of fun stories from our day!

We are excited to be sending you $508.28.

My friends and our classmates are praying for Ivy! 
We will be lifting her up during your trip to Boston and throughout her stay there!

She has a special place in our hearts!


Love,
Ainsley

And can I tell you there was not a dry eye in our house? We had to pass the email around because not one of us could read past the first sentence without sobbing. These girls are 11! They have friends to hang out with, jewelry to make, homework to do, malls to shop at, music  to listen to, party's to attend, and yet they chose to make lemonade and have a lemonade stand for our daughter! This portion of our journey is personal. It is a daily leap of faith now as we get in to the unknowns of what will and will not be covered. We have already taken our insurance company for quite the wild ride since coming home. But God continues to surprise us and continues to remind us that there are so many good people right here in this world cheering us on! We humbled and we are blessed! Thank you to these precious Minnesota Girls!! 

I promise to get some new pictures of the girls on here soon. Ivy is 

calling me, she's ready to get up and eat! 

Have a blessed day!!

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Tuesday, September 11, 2012

Holding my breath and pressing on

Pin It I thought I would get to this post sooner but life has me under arrest right now and I can't seem to escape much. 
So I have decided to skip some of the details and go right to the plan. I heard back from Boston Cardiologist. I had a very long conversation with the very man our baby girl will be in the care of when the time comes. We were told that, left as is, using only medication that is not working, we do not have much time left with Ivy and that we do need to move fairly fast. They feel that while the risk of this surgery is quite huge, they have great expertise and she has a great fighting history and they feel it is the best route for her. Its aggressive, and very different from the plan here in Phoenix. Ivy's heart squeeze is terrible and the only way for it to ever have squeeze is to get blood flowing through her Right Coronary Artery. Now before I go on I need to quickly say (because I am forgetful and might not get to it later) In address to the comment that it is difficult to read the blog with the lines. Im super sorry about those lines, I actually never had noticed and you are the first to mention it. I am in great need of revamping my blog (sweet Ivy needs to get on that header and , well the name, hello? lol).  I would love to have an all white background. But since Im not too savy that way and it costs money that needs to go to Ivy right now...... Darn pink with lines it is for now.  I will try to make the writing larger because it is probably annoying everyone and I just never knew it. Sorry friends! 
Ok now to Wife of the Prez, that commented about your sweet heart girl having the Fontan for the same heart defect as Ivy.... Im guessing there are some signifigant differences between them or she would have had one of these two, the Rostelli or the Nikaido. The Nikaido is the best choice for a heart like Ivy's. They would never do a Fontan on a Double outlet Right Ventricle, Pulmonary artery hypoplasia, 19mm VSD........ Im guessing your daughter might be a single ventricle? Thus making her a Fontan candidate. I know we have chatted before as we  were on a similar timeline with bringing our last 2 littles home, and you beat me.    :)~ Your kiddos are absolutely adorable!!!!! Feel free to email me privately and I can share more. Im in awe of your girl coming home in 8 days!!! WOW! (I am dreaming that for Ivy this time!)
Ok on to the plan.
Dr. Del Nido and Dr Baird will be performing Ivy's open heart surgery. Dr Baird specializes in specific valve repairs and he will be working right alongside Dr Del Nido. They are both Harvard Medical instructors in surgery. Del Nido is the head of the cardiac program at Childrens Hospital Boston. She will be in VERY good hands!! I figured if we are going all the way to Boston I am requesting the very best. They said to plan on being in the hospital 4 weeks. I pray it is much shorter but honestly 4 weeks is nothing at this point. Show me my babies heart beating after surgery and I will be one content mama!!
The repair~ 
Remove the patch they believe to be sewn in such a way that the tricuspid valve is now tethered to it, and the mitral valve as well. Re do the entire patch. Repair the damaged tricuspid and mitral valves. Reposition the Coronary Artery and place a shunt in it. If this works then it will get blood flow, if it does not then they will need to perform a bypass. Not sure how they will do that as they would use a mammory valve and hers seems to be missing... Please specifically pray the repositioning and adding a shunt solves the problem. Any surgery involving re-doing something is very high risk, but that coronary artery is where the huge risk is. Please pray specifically for good results with that. Again, I am shaking like a leaf 24/7, anxious as all get out, yet at such peace with this plan and how we ended up here. 

                                       
The thought of her being opened up again so soon, ugh;sjfdpejfpevenqvi..... but it will be ok, I know it will. It is just hard to watch that pain and discomfort that first week. Mama Bear I am sure will be hard at work again as they discover in Boston that my tiny girl requires the sedation of very large Mustang in order to be comfortable. 

Our entire family will be going to Boston to rally around our precious gift from God as He pulls her through this surgery and gives her a whole new life filled with HOPE! We feel there is no other way to go through this, other than together. Let me tell you, we LOVE this child SO very much and it might get a little loud and a lot tearful when they take her from us and in to surgery... I can barely breath typing this. It's like I find myself holding my breath each time I envision that day. But I also found myself unable to breath when the Doctors at Boston told me that we do not even have months with Ivy if we continue the path she is on. Whole lot of breath holding going on!
I don't tell you this for sorry feelings or hang in there wishes. Until you have been right here where we are, you really just can not even fathom. I do tell you because I know she is so loved around the world and you are all a huge vessel that God used to help hold us together last time. Can we do this again? Can we bring on the Team Ivy and pray this Beautiful Angel to full health? 




I don't know why things had to go so rough for this baby or so long before we got to here, but doesn't really matter now. All things will be understood in the end. All things both good and bad. And until that time, we are where we are for a reason and we will praise our Father right through every last drop of this storm. And on that day, His will will be done and we will continue to praise Him!!!
So that's it. We anxiously wait for the call that says we have insurance coverage details handled, costs discussed and are ready to schedule in the O.R. 
It could be as early as the last week in September and it could be as late as the 3rd week in October. The sooner the better, yet I just held my breath again. Please pray for a peace and calm for all of us. We are only as strong as human can be. And our heart are aching. 
Have I mentioned the depth of our love for our Little Ivy Joy, holding breath again!

Thank you all for your love and support! We are being blessed by offers of airline miles and meals, help with the bigs and visits in Boston. We are so eternally grateful!!
After the first week, Bryan will head back home so the bigs can go back to school and Bryan can go back to work. Lexi, and my oldest daughter Quincie and I will stay in Boston. Quincie, God bless this precious girl, will care for Lexi while I remain with Ivy. She will then give me little breaks so that I can spend some time with Lexi. If it gets too lengthy and she needs to head home then my mom will likely come out to relieve her. Quincie is in her last year at ASU but takes all of her classes (full schedule) on line due to moving to Virginia. Please pray that she can continue to do school even while caring for Lexi because if that is not working out so well, she will need to go home and I will be in a big pinch! 
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Thank you again! 




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Thursday, September 6, 2012

Hello Boston

Pin It We have spoken with the Sugeons at Boston Childrens. So much to tell you all. But I want to wait until tomorrow when it's not almost midnight (oh wait, that would be tomorrow!). Anyway, it's been a crazy couple of days. We have gone from yesterday, being told transplant time was here, to today, a whole other ball game! We don't have much time to get this done. My mothers instinct was true and real! Ivy needs much of what was done during her big surgery... Well, redone..
We are going to Boston. Sooner than later.... I should hear back from them tomorrow as we work out the details and coordinate everything. I will give you all the details tomorrow. Prayer warriors, Game On AGAIN!!! This is a very high risk surgery on a fragile little tiny peanut! I am at peace and yet shaking like a leaf at the same time.
Thank you in advance!!!

Jeremiah 29:11
"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."

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Saturday, September 1, 2012

More Sunshine

Pin It We are still trucking along here with lots of good days and a very awake and happy little Miss Ivy! She really really dislikes the heat so we just can't wait until it cools off around here! She is still very very timid with walking but she is so much more mobile lately and even took her first tumble that landed her a shiner on her sweet little cheek. She was standing up just leaning with her back against the couch and her little legs just got tired and wobbly and down she went, face planted on the tile. She is still pretty weak and doesn't really have the strength to break her falls so it's no wonder she insists on doing all her walking with mommy's hands held. I put her in the johnny jumper that hangs on the door jam and cut the clamp off of it. With me holding on to it like a leash, she walks all over the house in that, using none of my help but comforted by the security of it being there. She just needs confidence and a little fat to pad her falls.








 I could not take her little mullet any longer... So today she got her hair cut and while she did have lots of silent tears, she sat nice and still and did a great job! 







I love it!


She looks so much better with her little hair cut!

I find it so funny that I ended up with 2 little Chinese sweeties that have the thinest finest hair ever! 



                                        15 pounds and 29 inches of spice!!





 And more sweetness than we could ever know what to do with!




Yesterday I showed Lexi a picture of one of my friends little girls (also Chinese, same age) who just got a little hair cut. She looked at the picture and said, "Oh Mommy, that's~a   the   same~a    kind of long hair Im going to grow when I get bigger!!" So precious! 


Sweet baby girl will be 4 in December and still can't fit all of her hair in teeny tiny piggie tails! It just doesn't grow and she drinks soooooo much milk, has Keratin Shampoo, Eats plenty of fruits and veggies and nuts and she takes a multi vitamin. Oh well, It's shiny and soft as velvet and eventually, maybe not for years, but some day... It will grow :)

So Tuesday is the big day for Ivy. We already know that Sildenafil has majorly improved her quality of life but we will have an Echo and see what things are looking like. We have an appointment with the GI surgeon on the 12th to determine if she is a good candidate for a G Tube and will schedule the surgery in coordination with her upcoming heart catheterization. The less sedation, the safer for Ivy. 

We have not heard anything back about second opinions yet. Waiting very very anxiously for that one! But pleased as can be with Ivy's baby step progress. 

Matthew 11:28-30
"Come to me, all who labor and are heavy laden and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.For my yoke is easy and my burden is light."

I leave you with the sweetest littles in the world. Sorry if you already saw this on Facebook, I just couldn't resist posting here too.


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This picture puts in to prospective, just how TINY Ivy is. Lexi is a average if not small  3.5 year old. She is 37 inches tall and 28.5 pounds. She has very long legs and a very short torso. Look at Ivy's legs next to Lexi's...... They are sooooo little!!! I think that even if she was not in heart failure and gaining weight on her own curve, she is just a small girl. Everything about her is, small. 

 This picture gives me great things to look forward to! Sleepovers with these two giggling all night! Cooking up all sorts of mischief! 
                Wishing you a wonderful Long Weekend! Pin It
 
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