Pin It
Thursday, November 29, 2012
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!
Pin It
Pin It
Tuesday, November 27, 2012
Home is where the healing begins!
Pin It
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!
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!
Pin It
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!
Pin It
Friday, November 23, 2012
Home is near!
Pin It
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!!!!!
Pin It
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!
Pin It
Wednesday, November 21, 2012
THIS IS IT
Pin It
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
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
Monday, November 19, 2012
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!!
Pin It
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!!
Pin It
God is ANSWERING!!!!!!
Pin It
Pin It
Hey Team Ivy!!!
It's Mary's scribe again, having the privilege to update you all on the amazing progress Ivy Joy is making!!!!!!! You have already heard that she is now camping out in 8East!!!! Next step... HOME!!!
Please continue to pray that Ivy and Mary are busting out of Boston soon!!!! I, specifically, am boldly asking for that to be by Friday!! :) Will you join me in that big ASK!!!?
Anyway, back to Mary's update that she asked me to share with you today!
"It is impossible for me to post in the hospital but I must absolutely share how QUICKLY prayers are being answered! This morning I went in to a "lively" Ivy Joy! The child I saw in 8East was night and day from yesterday when she was shut down! Shut down she is NOT!! Talking up a storm, interacting with me, visitors and her beloved Dora the Explorer! She's snacking around the clock, fighting naps, expressing herself with mighty expressions when she likes or dislikes something!!!! (She even launched a cup of popcorn at me this morning!! :) ) PROGRESS!!
Ivy's cardiologist saw her this morning and said he is overjoyed by the looks of Ivy's lungs today!! There is no sound of a murmer when he listens to her, meaning NO leaking valves!! (Do I, Diana, hear an Amen!!) NO LEAKING VALVES!! He said she looks REMARKABLE!!"
There is still work to be done for Ivy to get her ticket back home!! But, thankfully God is in the details and He is providing and answering...
So EXCITING!! And so THANKFUL!! to be posting this for Mary today!!
Pin It
Sunday, November 18, 2012
Hello 8 East!
Pin It
We have received our ticket out of ICU!!
Ivy is on the floor!
Out for stroller rides, wagon rides, walking on her feet just a little (about 20 feet this afternoon and again tonight)
4 days post op from round 3!!! I am so amazed by this little miracle! So amazed!
From a cardiac perspective she is back to looking stellar!
I don't even understand how that is possible given all of that she has been through, but its true!
Her fluid retention is gone!
She is eating some and drinking some.
We have an ekg and chest x-ray tomorrow.
Yet another swallow test will be ordered for this week.
Another echo will happen this week.
She is being transitioned Heparin is the fast-acting anticoagulant and coumadin is for the long term.
Our prayers now are for her little precious spirit. That she will be back to her happy, silly, precious self as soon as we are out of here. She is so serious and and shut down. I pray that she will trust again and of course can not wait to see her smile again!! Our prayers are especially focused on praise and thanksgiving! Thank you God for giving Ivy life! For giving our family, Ivy!!
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God. Philippians 4:6
To all our friends and prayer warriors, thank you for loving and serving! Your prayers are our own answer to prayer!
I was a weak vessel through whom God's glorious power and grace could shine all the more brilliantly!
Pin It
Ivy is on the floor!
Out for stroller rides, wagon rides, walking on her feet just a little (about 20 feet this afternoon and again tonight)
4 days post op from round 3!!! I am so amazed by this little miracle! So amazed!
From a cardiac perspective she is back to looking stellar!
I don't even understand how that is possible given all of that she has been through, but its true!
Her fluid retention is gone!
She is eating some and drinking some.
We have an ekg and chest x-ray tomorrow.
Yet another swallow test will be ordered for this week.
Another echo will happen this week.
She is being transitioned Heparin is the fast-acting anticoagulant and coumadin is for the long term.
Our prayers now are for her little precious spirit. That she will be back to her happy, silly, precious self as soon as we are out of here. She is so serious and and shut down. I pray that she will trust again and of course can not wait to see her smile again!! Our prayers are especially focused on praise and thanksgiving! Thank you God for giving Ivy life! For giving our family, Ivy!!
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God. Philippians 4:6
To all our friends and prayer warriors, thank you for loving and serving! Your prayers are our own answer to prayer!
I was a weak vessel through whom God's glorious power and grace could shine all the more brilliantly!
Pin It
Friday, November 16, 2012
A quick update on our Super Baby!
Pin It
So so so grateful that we have gotten to this point and have a stronger Ivy! So happy to report that Ivy's surgeon and cardiologist are very happy with Ivy's heart and it's function! So so grateful to our mighty God who made her and loves her!!
I will be honest with you, she just feels so miserable today. It's hard on a mommy heart!
You know that feeling, when your child looks at you with those eyes that say, why aren't you fixing this?
She is sleeping it off today and my prayer is that she wakes up with the energy and zest that she showed me last night when she came off the ventilator. She was talking and moving all over and getting very mad when they told her she had to wait 4 hours for water! She was interacting with everyone, asking me to hold her, giving high fives and fist bumps to the nurses! Is she not just amazing?!? I seriously can not get over the magnitude of this baby girls strength and will!
Ivy came off the ventilator at around 6:30 last night. She was put on a high flow cannula and had good sats all night on it. She was tired and slept on and off from 6:30 till the wee hours! She has been drinking lots of water and while she does cough, the nurse said it just sounds like she is protecting her airway and not aspirating. I admit, it really makes me nervous when she does this.
We tried to feed her all morning but she refused. I know she feels crumby because Ivy only refuses food when she doesn't feel well. I was able to hold her from 7 until 1pm. It was wonderful. She was diving in to my arms when she woke up and I will say, her personality and spirit are back to her normal self.
At 1pm I laid her down to change her diaper and she fell asleep again. She has slept most of the day, waking only for a drink or to make sure I was still there holding her hand.
She is getting aggressive chest P.T, her lungs sound very junky, she has a massive amount of phlegm hanging around. It hurts so bad to cough.... can you even imagine?
She is still on the High flow tonight but the plan is to wean her to regular oxygen later tonight. She is not draining much in her 2 chest tubes (this is good) so they will be taking those out some time tomorrow.
She is very very very puffy. I should probably add a few more very's. She feels heavy, her legs and arms and hands are even big. They are adding more diuretics but my mommy instinct doesn't see the swelling going down quick enough. It is still considered normal, being only 48 hours post op and being a 3rd open heart surgery in just a few weeks. My prayer is that we see it drastically improved by morning.
So, in order to move forward and get her ticket in to 8 east and out of ICU, here is what we need.
More fluid coming out than going in.
Eat eat eat! She needs to be eating!
High flow off!
Good respirations, which will only happen if some of that junk in her chest gets coughed up.
Thank you for your prayers!!!
For your sweet children and sweet husbands who have been praying as well.
For the adorable cards and pictures and treasures in the mail!
For loving Ivy Joy!
Pin It
I will be honest with you, she just feels so miserable today. It's hard on a mommy heart!
You know that feeling, when your child looks at you with those eyes that say, why aren't you fixing this?
She is sleeping it off today and my prayer is that she wakes up with the energy and zest that she showed me last night when she came off the ventilator. She was talking and moving all over and getting very mad when they told her she had to wait 4 hours for water! She was interacting with everyone, asking me to hold her, giving high fives and fist bumps to the nurses! Is she not just amazing?!? I seriously can not get over the magnitude of this baby girls strength and will!
Ivy came off the ventilator at around 6:30 last night. She was put on a high flow cannula and had good sats all night on it. She was tired and slept on and off from 6:30 till the wee hours! She has been drinking lots of water and while she does cough, the nurse said it just sounds like she is protecting her airway and not aspirating. I admit, it really makes me nervous when she does this.
We tried to feed her all morning but she refused. I know she feels crumby because Ivy only refuses food when she doesn't feel well. I was able to hold her from 7 until 1pm. It was wonderful. She was diving in to my arms when she woke up and I will say, her personality and spirit are back to her normal self.
At 1pm I laid her down to change her diaper and she fell asleep again. She has slept most of the day, waking only for a drink or to make sure I was still there holding her hand.
She is getting aggressive chest P.T, her lungs sound very junky, she has a massive amount of phlegm hanging around. It hurts so bad to cough.... can you even imagine?
She is still on the High flow tonight but the plan is to wean her to regular oxygen later tonight. She is not draining much in her 2 chest tubes (this is good) so they will be taking those out some time tomorrow.
She is very very very puffy. I should probably add a few more very's. She feels heavy, her legs and arms and hands are even big. They are adding more diuretics but my mommy instinct doesn't see the swelling going down quick enough. It is still considered normal, being only 48 hours post op and being a 3rd open heart surgery in just a few weeks. My prayer is that we see it drastically improved by morning.
So, in order to move forward and get her ticket in to 8 east and out of ICU, here is what we need.
More fluid coming out than going in.
Eat eat eat! She needs to be eating!
High flow off!
Good respirations, which will only happen if some of that junk in her chest gets coughed up.
Thank you for your prayers!!!
For your sweet children and sweet husbands who have been praying as well.
For the adorable cards and pictures and treasures in the mail!
For loving Ivy Joy!
This precious video is from adorable lil prayer warrior Vivienne!
Pin It
Thursday, November 15, 2012
Our Hope
Pin It
It is my prayer that today is the start of the finish of this journey to Boston for Ivy Joy. While we are still in the critical stage, 48 hours post op, Ivy is doing well and looking good!
Pin It
She is being weaned from the ventilator little by little with the hopes of getting her off of it today.
The surgery yesterday was long and yet uneventful! She went on bypass beautifully, she opened easily, and she came off bypass smoothly. There was some trouble with her rhythms so the pacemaker team came up and they worked until they figured out the problem. She is not even using the external pacing wires, her permanent pacemaker is doing all the work already.
Dr Baird was able to get a 19mm mechanical valve in her! That is Huge!! He said you almost never could get a valve that size in a child her size because the extra flow could cause some partial heart block. Well..... Ivy already has complete heart block and a Rolls Royce Pacemaker to assist with that so they didn't need to worry about heart block issues. She also has been in heart failure so long that her heart is enlarged thus giving them another small bonus to using the large valve.
Our doctor said that he does not think Ivy is going to be a very big adult and so this valve will last her a very very long time. At least into her 20's! Possibly longer!
She will be on Heprin forever now. She'll wear a little medical alert bracelet and we will add the Heprin to the list on it. She should finally have ENERGY due to this new valve. Doc thinks her eating will pick right back up and her recovery will be easier.
I hope to have news that she is awake the next time I post! And I hope she is off everything!! Meaning no cpap, no bipap, no oxygen!! No feeding tube!! Ok ok one thing at a time!
Thank you for continuing to lift this precious child in prayer!
Please Lord, let this be done, no more surprises!!
Mama is all out of feathers in her hat! And Ivy is tired!
And yet.... You all know there is nothing I would not do to get this child home and well.
Life is such a gift!
Hug your entire family, every single member, a lot tighter and a lot longer this week! I can't wait to hug all of mine!
Wednesday, November 14, 2012
Tuesday, November 13, 2012
The night before
Pin It
I am back at my sleep station early tonight. Im going to eat a real dinner and get a good night sleep. I have felt every one of your prayers today, every single one. I am so blessed!
And I know that tomorrow is going to be a great day.
A mechanical valve is going to be the ticket to energy and freedom for little miss!
Well freedom with a helmet on anyway! And a padded suit!
I love her so much! We all do right! So pray with me, tomorrow, from 7 to whenever they finish! Because God has huge plans for this little girl !
Pin It
And I know that tomorrow is going to be a great day.
A mechanical valve is going to be the ticket to energy and freedom for little miss!
Well freedom with a helmet on anyway! And a padded suit!
Pin It
Ivy Update....
Pin It
Thank you all who have been here in prayer and thought for us today!
Thank you all who have been here in prayer and thought for us today!
Ivy is in ICU. She will remain sedated and comfortable through the night and tomorrow at 7am she will undergo her 3rd open heart surgery in 3 weeks.
The problems going on with the right side of her heart, are all secondary. The real problem is the mitral valve. Again.
It's been repaired twice but the gouge in it is just too severe to hold. She needs a replacement. A new valve. Dr Baird feels at this point, a mechanical valve would be the best choice for Ivy. It would mean no more replacements until her 20's. It also means blood thinners and lifetime precautions due to that, but we can handle that.
Oh how I hurt for the continued suffering my tiny angel continues to endure. I don't understand it, I hate it, but I know there is a reason beyond compression and I choose joy again today, for my sweet girl, for my incredible family that has made this all so much easier by the love and strength that they have for each other. For my husband whom I love so much and can not imagine doing life without him by my side.
Ivy and I are teaming up, and we are going to bust out of this place in no time!!!! My hope is that we will be eating turkey and mashed potatoes together next Thursday in 8 East and giving Thanks to God for her life and His plans for her!!
Father God,
"Thank you for sustaining me today. Thank you for embracing Bryan and I, and our family. It is by your Grace that we are all still standing tall. Please let tomorrow be the final phase to Ivy's healing. Let her come out of the Operating room with a fully functioning heart and allow her to come off bypass and the ventilator easily. Let her recovery be miraculous now. Let her soar to a new level of health and growth and development. Ease her mind, diminish her fears, erase her pain and all memories of her suffering. Use us in whatever way you see fit to bless others, to encourage others, to bring glory to You."
Amen
Pin It
Monday, November 12, 2012
Not home yet
Pin It
I face planted right onto my laptop, I am so tired! I woke up with my head on the keyboard. It was a hard day, a long day, a big day.
The doctors were absolutely shocked by todays echo, as were we!
They pulled me aside to talk alone. The sadness in their eyes was enough to make the room feel like an icebox. Dr Maarx, our cardiologist was so kind and so wholeheartedly disappointed.
Later this evening Dr. Baird came to our room. He held Ivy's hand and rubbed her leg and told her he promised to make her better.
The echo revealed that Ivy's right side of her heart is not working properly. The tricuspid has severe regurgitation. This is a secondary problem, meaning something else is causing it. Ivy will have a heart Cath first thing tomorrow morning (at 7am).
I am holding up fine, my heart just crumbles for her. Imagining what she has endured and how we have just finally started to see our smiley girl emerge from the suffering and here we go again.
I was weary and overwhelmed as I took in the information. Shaken by what seems like continuous suffering and heartache for this precious little peanut. But God is faithful and His timing is perfect. He knows what He is doing and He will perfect us, strengthen us, and make us whole~ with nothing lacking!
Remembering God's Promise tonight~
Be confident of this very thing, that He who has begun a good work in you will complete it. Philippians 1:6
Our baby needs her team on board again!
Pray fervently
Rejoice in His promise
Repeat!
Pin It
I have gone round and round on how I would share our day
I face planted right onto my laptop, I am so tired! I woke up with my head on the keyboard. It was a hard day, a long day, a big day.
They pulled me aside to talk alone. The sadness in their eyes was enough to make the room feel like an icebox. Dr Maarx, our cardiologist was so kind and so wholeheartedly disappointed.
Later this evening Dr. Baird came to our room. He held Ivy's hand and rubbed her leg and told her he promised to make her better.
If it is the right coronary artery again, they can address it in the cath lab. If it is something else... They will need to do open heart again. We pray it is something that can be addressed in the cath lab. And we pray her little body can handle this. She has been through so much in such a short time.
Remembering God's Promise tonight~
Be confident of this very thing, that He who has begun a good work in you will complete it. Philippians 1:6
Pray fervently
Rejoice in His promise
Repeat!
Pin It
Sunday, November 11, 2012
Another week begins
Pin It
Pointing to the door when the unfamiliar surgical nurse came in to say hello. She did not recognize her so she said get out!
Making a turkey with the volunteers, just like the big kids!
Looking at pictures of our sweet friend Kim's little girl Annie.
Modeling the adorable bunny coat that Miss Kim gave her!
The nurse walked in as I was getting my camera out so all I got were these little pouty faces. She is such a hunny either way. But man am I ever excited to see my little flower blossom back at home. No one to be afraid of, nothing to scare her!
Hilda, you know who I'm talking to.. Shame on you!! Please find a new hobby that does not involve my daughter or my blog. Perhaps pottery would be a good fit? I actually know an amazing Potter. Perhaps I could introduce you to Him!
I have deleted your nasty comment and will continue to do so, so please go away.
The greasy hands and face are courtesy of her obsession with bacitracin! We use it on her nose as the rip from the ventilator is healing but she likes to take it and rub it all over her! And that is A ok with me!
Tomorrow is a big day. It will shape how much longer we will be here. And let me tell you...... we are really antsy to NOT be here any longer! Today is day 30 in Boston!
So we have the feeding team coming in the morning to watch her eat breakfast and drink. Then the feeding tube comes out. Next is a swallow test. Then an echo cardiogram. We specifically pray that the aspiration be gone. That the mitral valve is still doing well. That Ivy eats and drinks more with the feeding tube out. That we get the go ahead to be on a plane by Friday!!! Pin It
Lots going on here in Boston!
An improved xray was the good news this afternoon!
More visitors, thank you Maggie and Kim M for your visits this weekend and your patience in allowing Ivy to decide when it was ok to get near her and interact with her. I loved watching her finally be able to have control over something. And I love how you both earned her trust by the end of the visit. It was a treat to be able to share this amazing sweet girl with the both of you. I look forward to a day when we can do it under much better circumstances.
Hilda, you know who I'm talking to.. Shame on you!! Please find a new hobby that does not involve my daughter or my blog. Perhaps pottery would be a good fit? I actually know an amazing Potter. Perhaps I could introduce you to Him!
I have deleted your nasty comment and will continue to do so, so please go away.
So we have the feeding team coming in the morning to watch her eat breakfast and drink. Then the feeding tube comes out. Next is a swallow test. Then an echo cardiogram. We specifically pray that the aspiration be gone. That the mitral valve is still doing well. That Ivy eats and drinks more with the feeding tube out. That we get the go ahead to be on a plane by Friday!!! Pin It
Subscribe to:
Posts (Atom)
