3 years

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The joy she brings to our family is indescribable.

3 years ago,  we met in Changsha

and we will never be the same.

We love you forever baby girl!!

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Our surgeon, Dr Baird

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T

This man goes beyond the call of duty!

And you can see.... Ivy is Flinching.... 

She won't let him get too close to her even though he is the reason she can finally have a regular life. He is the sweetest man with the most impressive bedside manner and we are so happy that he encouraged us to come here! Ivy gave him a high five and fist bump and then pointed to the door haha! He is so sweet to her!

Yesterday was a very low key day, Ivy was snuggled in my arms until bed time. She is very very tired and getting no sleep due to the room mate situation. I asked if we could be moved, and they agreed that it was more than a good idea, but the charge nurse had all the reasons why we could not move. I am so disappointed. Ivy needs sleep in order to heal.

Counting down to HOME.... I'm So Ready!!!!! 

Dr Baird said by the end of the week. 

Have a wonderful weekend!!!

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All Done!!!!!!!

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Ivy once again proved to be worthy of the stellar patient award!! She was so calm and so peaceful going in to the OR that they decided to do her with JUST GAS! She was awake!! And she did not move! She was not sedated nor intubated and she is sitting here watching Dora with her hard boiled egg in hand right now! The whole morning was calm and peaceful even though she was without food  and water all morning and afternoon. I am so proud of her!!

She is going to be evaluated by the feeding team again Monday. Until then we will hold off on drinking fluids. But she can eat! Yay Ivy!!! Pin It

Little Child, Big Miracle

Pin It There is currently only one thing keeping us from going home!

Ivy can not drink and now it is becoming difficult for her to eat wet foods too. If it's not dry and crunchy, she cries when she tries to eat.

She had a test done yesterday where they put a flashlight down her nose and throat. They did this bedside and our precious girl lay there as still as a rock and waited. I am so proud of the incredible patience and tolerance of this little girl! She is just amazing!

What they discovered was a damaged vocal chord on her left side. It opens and stays open, thus allowing fluid, food, air to leak and cause her to aspirate.

So today at 1:30 pm she is having surgery. She will be ventilated and she will be sedated. This makes me so sad, but this is the ticket to getting out of here. They will inject a foam that will fill the opening. The hope is that it will fill the gap while it heals and allow Ivy to swallow and breathe without pain or aspiration. 

And if all goes well, we hope to be home by the end of next week!!!!!!!!!!!!!!! Im secretly hoping for midweek!!!!!!!!!!!! I miss my home!!! And I want to see my baby girl blossom with her family!!!!

We have had a wonderful week! We've had many visitors and Ivy made a new friend who is also from China. (Her brother is from the same orphanage as Ivy!) They were here for a cath and we were blessed with a new friendship! On the eve of my birthday a very large and special package arrived from my mom. My mom sent my sister to Boston!!!! She will be with me until Saturday morning! What a huge blessing!!! Thank you mom!

We are finding a little more of Ivy's joy every day!

 She has been showered with packages and special deliveries every day! We can not thank you enough for helping to make every day more tolerable. The delivery people know her by name now. 

 Thank you for all the beautiful edible arrangement (no card so we don't know who to thank), flowers, balloons, stuffed animals, cards, chocolates, Ivy Joy necklace, trinkets, stickers, snacks, care packages and fun things!!!!

Ivy in her Joy shirt!!

We have been here for 2 open heart surgeries, an earthquake, a hurricane and now snow!!! We are ready to go home!!!! 

 Having the freedom to walk around the hospital, go to lunch together, explore a little, is the best medicine for Ivy!

What One days mail looks like!

Is this not the sweetest thing??? We love all the kids who are praying and thinking about Ivy across the globe. Wouldn't a reunion be amazing??? A planned meet and greet when Ivy is well!! A chance to hug and thank all of you! And a chance for all of you to see sweetness in person? Thats my dream :)

Ha, her hand looks a bit HUGE in this picture but I had to post it since she was snuggling mommy in it :)

By faith, I will look forward to telling you all tonight that she is OFF the vent, had NO problem waking up from sedation, and IS drinking without aspirating!!!!  

Love you all!!!!!

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Progress for Ivy

Pin It It will take leaving this hospital for our little bumblebee to really fly. And really feel safe.

 She watches the door, follows whoever walks in the room with ONE eye. Keeps her stone face on guard, and holds my hand.

She tolerates everything being done to her with no tears. 

Her doctors and nurses think she looks fantastic! Her mommy thinks she is fantastic!!

She is already gaining weight. Her low weight that she had dropped down to last week was 13 pounds! (at 2 1/2). That weight haunted me! But she is already up to 14 pounds now. I can already see it in her face. It had gotten so thin and sunk in. Don't get me wrong, She is far from where she needs to be, but she will get there fast now that she is well.

 She shuts down in the play room. I think the worry that something else will be happening soon just gets the best of her. 
So we take lots of walks, watch lots of Dora, allow her to eat all the time, and wait together.

Blood pressure med is working, they are monitoring her closely, trying to find a happy medium 

 Her LA pressure is still high. It will take her heart 3 months to get to its Full new function. 

 I keep falling asleep typing this and waking up to a jumble of letters lol! 

Her lungs still have fluid in them. She gets a chest x-ray in the morning to see if we need to take a more aggressive approach. 

She has damage to her vocal chords so we are thickening all fluids like we did after last surgery and she is not the least bit happy about that. She likes salty snack foods so she is always thirsty and now that she knows everything is thickened, she just flips her lip and gets big sad tears down her face! 

She will have another echo and pacemaker check in the next few days and then once the results are in from that, we can start discussing the idea of us going home and the plan, as to when.

To say she is doing amazing would just not be saying enough! She has blown the doctors and nurses away with her will to live, will to get better, and the speed that she has been moving since she woke up! And the chances of getting a fever and pneumonia when you are recovering from 2 back to back surgeries is HUGE! I know we are not home yet, but Ivy beat the odds on that one too!

I thank you all again for praying for our daughter. For diligently following along and caring enough to leave us messages and share the joy!

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What lies beneath

Pin It One would never know just by looking, that once upon a time these 2 girls were waiting.

For a mother For a father For a family For a home For love
For food For affection For HOPE

               And one would never know that under all these layers

                                            Under all this cuteness

                                              Under both the shy smile 

                                                And the serious face

                                               Behind the giggles

                                                    And the stink eye

                                     And the sweetest face of all

Lies a multitude of badges. Badges of honor and bravery. Badges of patience and determination. Badges one would never wear by choice. But she has been chosen. And from the outside, one would never know.

 So to the anonymous commenter on my post titled ~ask and you shall receive~.. 
I do not know why God chooses to heal some of us on earth and some of us in heaven. But he does answer all our prayers and petitions. All who have chosen Him will be healed. We will have new bodies and no more pain. I do not know why some of Gods children have to die as children and some have to go through horrible suffering on earth and live with reminders of that suffering their entire lives and some seem to fly by without much sorrow at all. But I do know that we can choose to allow it to shape us in to amazing works of the creator and use our hard experiences to bring joy and peace to others. I do not know why he chose Ivy for any of the work he is doing, but it has required a great deal of suffering. For a little tiny girl. Yes, it is a beautiful ending, but it was not easy. We may not have lost her but the road was painful. Life is full of pain. The bible tells us that there is a coming time when all sorrow, tears, pain, and death will pass away. There's coming a wonderful day when God will wipe away all tears from the eyes of His children, and our sorrow will end forever.
 

The Lord Jesus Christ suffered for all of us, that we might have eternal life. The curse of suffering and death entered this world because of sin. Yes we are ALL sinners. Big and little, young and old. ALL. But we CAN escape the curse through the Lord Jesus Christ. Jesus said, I am the way, the truth and the life: no man cometh unto the Father, but by me. There is a day coming when all suffering will end for those who know the Lord Jesus Christ as Savor. Revelation 21:4 says, "And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

If you have any more questions, or you would like to know more about salvation through Christ, please feel free to email me using the -contact me- link on this blog. 
Tomorrow I will post more about Ivy and how she's doing!

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Ivy Joy we love you!

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Sorry If you've been holding your breath for a post. Between the crazyness that has been going on with Ivy and the hotel having Internet problems, I was not able to post. I have a ton of emails, I haven't responded to because we can't use phones on the cardiac floor so please accept my apology! I hope I answer all your questions here tonight.

I'm posting tonight from my phone so no pictures just lots of info. I will put a couple on Facebook in case you need a quick peek at princess stink eye. 

So where are we? You know she woke up, she's been pretty low key and in a fog until today. Today her mind is as clear as glass and she is less sleepy. Yesterday we moved out of ICU!!!! Yep, hours after waking up!!!! She is off oxygen, getting bolus feeds at night only, eating 3 meals on her own. She has all chest tubes out. She has a picc line that mommy fought for her to get and sure enough her last IV went bad last night. She is sitting up for a good 10 minutes at a time before she complains of pain. She looks so fantastic!!!

The things we are working on are wet lungs. Very wet. Weakness. She has lost so much weight that she can't stand without quivering. So we are trying to get some weight on her with these extra feeds. Her blood pressure meds are still being tweaked a bit. Her pacemaker gets checked tomorrow. She is not turning her head to her right at all. She had a line there that was just taken out and we think its just very sore, but we have someone coming out to take a look and be sure it's not a pulled muscle or something. She gives everyone the stink eye, here in Boston they call it the hairy eyeball. Anyway, I think tonight she finally forgave me for all of this and she spent  the rest of the night in my arms. She took a longer time to go to sleep tonight, another great sign that she is feeling better 

 Her strength after having 3 open heart surgeries in 6 months, is going to be slow to come. She needs to gain weight, gain stamina and ultimately, she needs time to heal!!

Her chest is quite bowed out due to the 3 openings so close together. Her incision looks wicked fresh and frightening still but it is undressed already and doing fine. 

Outside of that, nothing!!!!! She is doing absolutely amazing!!!!! 

God's Miracle !

Thank you for continuing to hold Ivy up in prayer .

Mary

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