Lexi Jade Day

Pin It                                 Today is all about YOU

Happy 4th Birthday to my sweet little angel who stole my heart just over 3 years ago and has kept me completely smitten with her charm ever since!
She has had quite the year! And she has surpassed every expectation for all that has been tossed her way! She is an amazing big sister, little sister, daughter, granddaughter and niece! She is hilarious and adorable and just the greatest gift that we could ever imagine! 
Lexi Jade, We love you more than life itself! 
Happy Birthday!!!!! Pin It

My Christmas Wish

Pin It Mommy! Mommy! Mom!!!!

That is how Ivy calls for me! If I am not quick enough to respond to her first or second Mommy, I become MOM! She has copied this from Lexi, as she does most everything. Yes this little girl is going to keep me on my toes ha!

                                         Rarrrrrr, This is her tiger!

Words from Lexi this week.
Ivy, If you keep just sittin on that couch and eating all those chips and watching all that tv, your bottoms gonna leave footprints on our couch!!
She just cracks me up!!

And her words to Ivy must have worked because the healing has finally started to speed up for our baby girl and she is a little better every day! 

Today she was on her feet way more than she was off them. She is putting weight on her arms now and looks like she is in much less pain when she goes from laying to sitting and when she pulls up to stand. It still looks painful, but nothing like before. 

Today at the park when Lexi saw Ivy approaching the slide she came running saying, I'm worried about you Ivy, I'm worried my baby sister might get hurt on this slide! Little did she know Ivy had no desire to try the slide alone. 
Lexi skinned her ankle on a bike ride this evening. She didn't cry or fuss about it the entire ride. But.... when we got home and she saw the blood, she began to cry. Ivy immediately crawled over to her with her kissy lips puckered. She said, you ok Lexi? You ok? And she kissed her foot and her ankle and every part of her entire leg! She is so empathetic and loving it is just the sweetest thing to watch!
The girls are doing fantastic! 
In complete honesty, last weekend I was getting really concerned about Ivy. Her belly was getting big again and she was saying owie all the time. 

I am so used to there always being a crash after every step forward that my mind was just programed to worry about what was next. I had to start every morning just asking God to remind me that I need to get through one day at a time and not worry about the rest. Ivy is here, she is thriving, she has gained 4 pounds!! She is 17 pounds! Her tiny arms are now 3 and 5/8 inches around at the biggest part and her thighs are 5 and 5/8 inches around at the biggest part. Don't get me wrong, I know that is super tiny, but it is growth for Ivy Joy! 
It turns out she had a UTI, a common thing for kids on diuretics. However this was Ivy's first. She was like a new kid by Monday afternoon! Her INR (level of blood thinness) is right on as of right now. With toddlers, that never stays the case. I test her blood at home on my own now. She is such an incredible trooper about it! When she see's the kit she starts saying, ready... set.... its ok.... ready... set..... over and over. She cleans her toe with the alcohol pad, she loads the machine with the strip, and she insists on seeing the blood. I think it makes her feel better to see every detail of what is going on. The first few days I did the poke on myself each time I did hers so she could see that it was not so bad. (it really doesn't hurt, just a very quick little poke) Ever since doing that she is really calm about the whole thing and extremely helpful. One day we will get to a point where we just test once a month.. one day! 
Seeing the reactions of all of Ivy's firsts has been so much fun. The kitchenade mixer, She loves it, talks to it and feeds it chocolate chips! Candy canes, the nativity and Santa Clause! 

Oh and here is the cutest little funny from Lexi while we were using the mixer. I had the plastic splash guard on the bowl while it was mixing. Lexi was trying to look in to the bowl but could not see very well. She looks at me and says, can you please take the pacemaker off this bowl so I can see my cookie dough! I almost fell over laughing! Yes she has a cardiac sister!

My Christmas wish~
I have more than I could ever ask for!


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SHE SMILES!

Pin It This is what Ivy Joy does all day! She smiles!!! She laughs!! She loves!!! Oh how we love having our girl back! And better than ever! She is so precious in every way! Her voice, her mannerism, her enthusiasm, the way she loves us, the way she smiles, even the way she chews... I'm not kidding it is so precious!!! We are just loving every minute of this miracle!

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Home is where the healing begins!

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                                                                    My heart is full!

 And Ivy's... Oh my goodness!!! She is just beaming! 
 We had the most amazing flight home. It was a mere 4.5 hours from
 the time we stepped in the plane to the time we stepped out! 
 We live in AZ!! Incredible!

 I gave Ivy her lovenox injection during the flight and had
 to choke back tears as I thought about all the hardship my
 sweet friend Kim and her beautiful family saved Ivy from
 having to go through by arranging this flight! 

Can you imagine having to give a baby a shot on a crowded airplane? 

Uncle Bryan and Ivy napping on the smooth flight.

                                                           Ivy soaking it all in!

 Our family and a few friends were all waiting when we landed. Ivy was    
 so happy to see everyone and went right to daddy and her siblings. We 
 drove home and as soon as we turned in to our neighborhood Ivy screamed,
 HOME!!!!!!! It absolutely melted every one of us! 

 She has not stopped beaming since we arrived! She is just in love with Lexi.

 Always looking for her and always copying her every move. She is eating  
 well. Not coughing or having any trouble with fluids!! She is talking like  
 crazy, I mean really just talking up a storm. Even the doctor commented on 
 it today. 
 We still have a bit of home nursing going on, courtesy of mommy. 4 wounds  
 that need dressings changed twice a day. Her lovenox shots (we stopped these 
 as of today). We go for INR blood tests every day. We saw the new  
 cardiologist today. She had an ECHO, EKG and regular exam. Her doctor was 
 pleased with what he saw. She goes tomorrow for another echo because the 
 person who did it today forgot to take photos of her coronary arteries as 
 well as to get her daily INR. We see the pediatrician on Friday. Add the 
 the fact that I do have 4 other children at home and that Im really trying 
 hard to just suck in every moment of this beautiful re entry and that is why
 it has taken me a few days to post. I am absolutely on cloud 9!! The girls 
 are so sweet with each other. Ivy has picked up right where she left off 
 with everyone. They are sleeping well and just so so happy!!!!!!!!!!!!!!
 The house looks like a tornado hit it but I have given myself until Thursday  
 night to get a handle on it (I hope wednesday is an extra long day!) 
 Thank you everyone for checking in on us and of course for your continued 
 prayers!!! I promise, if there was a problem I would have let you know. We 
 just really needed a few days to just be a family :) God is so great an life 
 is so good! 
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Home is near!

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O Lord, My God, I called to you for help and You healed me.

You turned my wailing into dancing; you removed my sackcloth and clothed me with JOY

Ps. 30:2,11

                       Thank you CHB for taking care of me!

 Thank you Dr Baird for taking a chance and fighting for my life!

 As much as I'm grateful, I will not miss you! But still, I love you!

 I have to get home to my family now! My daddy is waiting!

                       My sisters are waiting and my brother is waiting!

 Goodbye new friends! Goodbye nurses in the night. Goodbye lack of sleep, constant pokes and beep beep beeps!!

 goodbye walks in the hall and cafeteria food. Good bye room service and cheddar broccoli soup!

 This place and the people have made me well for the first time in my life! Im going home!!!!! Finally, Home!!!

 Iv'e spent every holiday in the hospital so far. Easter and birthdays, halloween and thanksgiving....

 But the most important one, the celebration of the birth of our Lord and Savior, the one who made me just as I am, rescued me from my suffering and healed me....I'm home just in time for!

 Here's to you Boston! I'll be looking at you from my rearview window now.  

 I have a family, and lots of friends waiting for me and I'm heading HOME!!!!!

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THIS IS IT

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There are so many pieces to the puzzle that makes up Ivy Joy's life. The daddy who said, what are we waiting for, she needs to get home. The mommy that fought the fight of her life from the second we said yes, and right until this very day and forever. The sisters and brother who gave things up, sacrificed, prayed, and loved this little girl more than life every single second. The grandma and Aunty who are different people now, more thankful, more aware, and ultimately, changed because of the head over heels love they were overcome with when they met this little girl. The friends of my own kids friends, who have been touched, changed, overwhelmed, by the life and value of this once very sick baby girl. The friend who I never met, praying with me at the wee hours of the night on the phone before we ever left for China. The friends, old and new who stepped in, offering anything they could come up with to make our decision to head to Boston, that much easier. The prayer warriors all around the world dedicating prayer after prayer after prayer to Ivy Joy while hearing God speak in thier own lives and finding new hope and stronger faith, all because God, and His works and this little girl. New families created because when we said yes, they found the faith to say yes too.  A dear friend of mine who insisted on praying for Friday discharge even though the doctors said we would be discharged by Monday and then stay in Boston a few more days. Even though we knew Friday was not an option, she continued to pray big because with God, all things are possible. She never gave up hope. All the people from family and home to China and France and all around the world, hearing over and over that we were on the road to recovery and over and over again, that we were not doing well and needed prayer yet again, they never gave up, they never lost hope, they never said it's over, and God stepped in, again! A dear friend from home who made so much of our travel arrangements for us and is here with me now, just waiting on Ivy and I hand and foot with the heart of a servant all because he fell in love with this little girl and was blown away and forever changed by the act of God and His ultimate plan for this ~once an orphan, labeled terminal, little girl~. A dear friend that I only met a week ago, who happened, not by accident, to be right here with me the moment I found out Ivy would need a 3rd open heart surgery. She became family that day as we cried together just picturing my tiny girls chest being opened once again and all the fighting, the pain, the suffering she would have to endure once again , and when the time comes, this beautiful friend of mine is having Ivy and I flown home in a private jet so that this little girl can have as little travel time as possible and be back with her family where she will blossom. The cardiologist who has built me up time and time again, always full of kind words about my heart, my soul, my parenting, my advocating, my nursing lol, my love, for this little girl. The surgeon, oh this surgeon, he is so much more than that. I cry as I type this knowing that he is the silver piece in this puzzle... God being the golden one. He looks at Ivy with these eyes that have so much compassion and he spends so much time with us, checking in on her often several times a day. But last night when he came in, still dressed in his O.R gear, it was dark in the room and Ivy was just falling asleep. He held her hand and stroked her wrist. And he told me a story. A story of a little girl who was born 13 years ago with a very complicated heart defect. And how her surgeon cut a hole in her aorta by accident as well as several other mistakes. This 13 year old girl is his daughter. His baby! She was on ECMO, she was in heart failure and at 6 months needed a heart transplant. She then went on to needing a kidney transplant by the time she was 2. His daughter. He looked at me with the kindest face and told me that he spent Thanksgiving and Christmas in the hospital, right here in my shoes! He was in med school when his little girl was born, and I am sure that his little girl is why he is a heart surgeon and why he has such a passion to bring Ivy home healed as best as her little heart can be. I did not know any of this before last night. But God did. God knew who Ivy needed and He brought me here. There are so many more pieces to this puzzle. Children all over praying and sharing Ivy's story. Having lemonade stands and praying those Huge, rock solid, big prayers with an unshakable faith in their fathers ability to do more than we could ever fathom! Nurses who have loved Ivy from head to toe every single day. Our DR family who has supported us from day one with love and prayers.  Our Ladybug family, praying fervently! Our Napa family and Vacaville family, that loves us so much and never gave up hope! My dear friend Jill who traveled to China with me and precious Maggie who is the kindest woman I know. The people who now know Christ, or have come back to Him, all because of His works through Ivy Joy. My China Heart mom family, I love you all! My church family. My precious nieces who have sent me text after text just to love on me and support me. Keith and Brandy, our dear friends in AZ who loves us so big! Nat, Chris, Laurie, Tina you are such vessels in all of this! I love you. Jane, Holly, Luciana, Paige, Annette and Alex, Melanie Mannos and family, Jilie Wingert, Kathie Hikade and lovely Sierra, Carmen Piper, Jennifer and Kim, Amy Roy, Ben and Amy, Stephanie Chu-ba, Karen McCarthy, Wendy, Beth Cario, Barb Whalen, Mary Ellen Meyer, Tonia Davis Evans, Sherri Zimmrman, Lyn Thomas, Elizabeth Rozman, Karen and Lily, Kendall, Todd, Avery and Chloe, Sharon, Sharyn and LiLi, Kelley and family, Gretchen Downey, Glenda, Penny, Susan Sims, Jo, Jen and Christian, Yvette, Georgia Grace Family, 
Thank you for your kind emails and constant prayers!! So many pieces! Too many to go on right now, but all, equally important, valued and loved! Amy Timberlake, I love so much and have loved every phone call and message! Sarah and Lee, Thank you for taking the leap too! I love you guys and cant wait for our babies to meet! I could go on forever, but I have a room to pack.
What you say???
Thats right! My buddy Diana, in Minnesota never put our mighty God in a box, she prayed big and she prayed out loud! And we are being discharged on FRIDAY!!!!!!!
Ivy is cleared to go!!!! HE Echo was great! She is eating like a football player. She is happy as can be, laughing and playing and talking and, well, eating some more! Not chocolate and chips either! Real food. Large amounts of regular, real food. Baby girl has energy to finally eat a full meal! And she is loving it! We are not at a perfect INR but her cardiologist is confident that she will be ok enough to get out of here by Friday. And they are so confident that mommy has no problem with her care that they do not even need to see us for a follow up here in Boston. We will see our new cardiologist, shortly after getting home. He is the new~ Head of Cardiology for Phoenix. He comes from CHOP! Praise the Lord. Another piece of the puzzle. We see him Tuesday. My friend Kim will be here Friday to escort us home on Saturday morning!! We will arrive at Williams Airport on Saturday around 1:30pm. I still can't believe it. I have said This Is It, over a dozen times in regards to my sweet girls healing. and here we are, finally, in God's timing..
THIS IS IT! Pin It

Gods timing is perfect

Pin It But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. Isaiah 40:31

Today was absolutely fantastic! Ivy was outgoing and engaging! She was talkative and receptive. She ate from the time she woke up to the time she went to bed. She had a great chest x-ray. She did her first poop in a week. (hey, this is important when you have a large heart, large liver and a pacemaker.... there is no room for poop hanging around)

And tonight we had a wonderful talk with our surgeon.
And we are positive that Ivy is not going home for Thanksgiving, nor the Friday following.
But honestly.. she is 4.5 days post op and look where she is!!!!!! She is doing fantastic and Gods timing will be the perfect timing for her to come home. And we will give thanks, oh so much thanks! And PARTY!!! And CELEBRATE all month!!!! And eat real food! And sleep in our own beds!!! And go outside! And drive a car! And wear different clothes! And use our private bathrooms! And it won't get dark at 4pm! And there will be no beeping or alarms or doors slamming or annoying intercoms! And we will cook! And clean! And be with our family forever!!! And Ever~!

Ok now that I got that out of my system, here is what we are looking at for little Ivy and her much anticipated discharge from Boston Childrens!

Ivy has been transitioned to Coumadin. Coumadin is her new anticoagulator (blood thinner). She needs a blood thinner because she has a mechanical mitral valve. The blood thinner will keep the valve from getting clots in it. 
Your liver uses vitamin K to make blood clotting proteins. In doing so, vitamin K plays a role in your bodys natural clotting process. Coumadin works against vitamin K and reduces your livers ability to use vitamin K to produce blood clotting proteins. So by taking coumadin, ones risks of forming blood clots are greatly reduced.

Ivy's goal INR level is about 2.5-3.5. Today she tested in at 8! Way too high. She was not allowed to have any activity today and had we been home like this she would have been in bubble wrap all day. We are trying to bring her levels up by feeding her dark green veggies and she was such an awesome little champ today and ate her entire bowl of broccoli. I am making her kale at the yawkey house tonight and will bring it for tomorrow. We will draw labs daily and expect it to take 3-5 days to get her to her perfect level.

Tomorrow she will have an echo to be sure there is no fluid building up around her heart, a side affect of INR levels getting too high.
Our prayer request is here! This would be a huge set back.

Once Ivy is at her preferred level then we can begin discharge paperwork. Given the Holiday, we expect this will take place around monday. 
Once discharged we have to stay in Boston until we can be seen as an outpatient by our cardiologist. This could take 2-5 days. And once we get the ok at the outpatient appointment then we can say good bye to Boston!

4 months from now we will head back to Boston for a heart cath. Just to be sure that all is functioning as it should. It should be a short trip, and uneventful!
God willing!

Oh and I'm sure you want pictures right????

Here she is Sunday~

Still in ICU here. Still feeling crumby

And here she is today!!!
What a difference a day of prayers makes!!

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