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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30 comments:
Wonderful update. So happy to see Ivy out of bed and dressed up in her pretty clothes out for a stroll. Love the little smile on her face in the stroller.
Thank you for this update. This little munchkin is just so gorgeous. I love seeing her pictures. Even the stink eye ones. But of course, the ones of her smiling are priceless. Thank you for posting a pic of yourself with her too. It's good to see you. And you look great.
I'm happy this little animal print diva is liking her broccoli. I thought Mila was just about the only child who chomps on brocc's . :)
Prayers for all to continue well.
xoxo
Lovely Ivy, we love you so much! We can't wait to see you running, skipping, and getting in troubles at home. We are praying for your INR level to be perfect, in the range of 2.5-3.5!
Love and prayers,
Holly
Mary, she looks fantastic! God is so, so good!
Sweet baby! She looks so wonderful!
Definitely praying for those INR levels! Our Kev's were too high too but after lots of prayer they came down really quicker than expected...so we will PRAY PRAY PRAY!!!!
And also definitely praying for NO FLUID!!!!!!! We've had experience with that too, and will plead with God for mercy that Ivy will have NONE around her heart!
Sending hugs from AL
Oh I love that sneak of a smile she finally gave:). How I will be praying for you all as you move through a holiday without your family!! I remember as holidays or special days approached after Jeff died that I would tell myself " it is only a day and I can get through that" . Praying for these tough days!!!! Praising God that he is taking care of it all!! Hugs sweet friend!!
Yet more reason to feel so very thankful!
Because I can't help but comment on the "dark at 4" complaint: imagine living in north-eastern Maine. Sunset is at 3:52 PM today. We have four more weeks of shorter days before we start going the other way. (sigh) :)
I'm sure you are feeling homesick on so many levels, but you found the right hospital and doctor for Ivy and she is moving forward in her healing. And I am beyond happy for you all. I hope you can feel all the cyber hugs being sent your way!!!!
Prayers for the INR to come down and NO FLUID. NADA. NONE.
The life is coming back into her eyes. Love, love, love it.
You are nearing the finish line. It must be hard to endure a bit more but you are in the home stretch. God's perfect timing!
Beth
And I'm dieing over the pink, ruffly legwarmers that I'm sure Momma made for her.
So happy to see her teeny tiny smile! Praying that everything continues to go well with the wee one. Love M
Yeah, Ivy. So thrilled to hear this update. She looks simply precious and I love the matching leopard print boots..so cute.
Continued prayers for healing and for discharge next week! ~Holly
Praying for Ivy's INR levels. She is beyond cute! Stay strong Mary, you're almost home! Our mighty Lord has you in the palm of His hands.
Thank you for the update! We're all praying so hard for little Ivy. God bless you all and I will continue to pray that she gets better with each beat of her amazing little heart.
Christmas for you this year will be a very beautiful one, no doubt!
coumadin is easy peasy! I've been on it most of my life. Though I have a lot of trouble keeping it at a therapuetic level. I'm older and I know the signs when it's too high or low. Ivy will learn to tell you which she is. In highschool I had to change to non-contact sports (golfing, long-distance running instead of my beloved soccer).
All very doable. Hoping this is little Misses last hurdle!!
LOVE the broccoli photo, I get the same look when I'm served broccoli! : ) I loved this update, such wonderful news, all the way around.
Many prayers of Thanksgiving for you!
Way to go Ivy! You look great! Praying all goes well and that you are discharged soon.
Courtney
You look fantastic Ivy Joy:))) So happy you are up and about and even going outside!!! Soooooo awesome.
God Bless,
Diane
Glad to see that Ivy is heading in the right direction. god has plans for this beautiful lady. God bless her and your family.
What a precious little lamb! So glad she is progressing!
Much to be thankful for this Thanksgiving, indeed!
OK the smile is priceless. Still praying in TN. I would say "hang in there" but I just want to punch people who say that to me when we're at the hospital.
I am so sorry you are there for Thanksgiving, but I'm so thankful she is doing so well.
S is on a blood thinner--1 baby aspirin a day, and little S is on half a baby aspirin a day.
I did laugh at the bubble wrap comment. I know how you feel. Not funny but sometimes you just gotta laugh ... or cry. And that feels good sometimes too to get that out.
Ivy does look amazing. Now to just get all these numbers exactly where her doctor wants them to be. God can do that!
I'll pray for the INR to come down and no fluid.
Ivy is amazing, she looks so great and so pretty, love the brocoli's picture!
I'm so impress by your strength, Ivy and you are such a dream team!
Prayers and prayers
Hugs
Mary, so much to be thankful for this Thanksgiving!! loved the pictures!! will be praying for good INR levels and no fluid!! also for continuing strength for you as you are on this journey with Little Missy!! Blessings,Cathy in Illinois!!
I am sorry you will not be home for Thanksgiving Mary! BUT I do know how much you all have to be thankful for. God does have perfect timing and it is often so very hard for us to see it. You have inspired so so many people with your faith and grace through such a challenging time. I cannot even tell you how many people have told me that YOUR faith influenced them (including me too).
I am so happy to see Ivy Joy perking up and strolling around. Kale with raisins is really yummy. My kids like it that way. Hoping and praying for more good news soon.
Happy Thanksgiving!!!
Gotta love the "stink eye" comments. I don't know what INR is, but it must be pretty awful. Praying for God's healing arms around Ivy and his hedge of protection; and also you, Mary. There is a lot of nasty stuff going around here in GA. Can't wait to read about your progress tomorrow!
I read this update and forgot to post a response. Thank you for the amazing update and I pray today went well, too! I know how hard the whole INR thing can be and I hope they can get that in range pretty quickly. I'm so sorry that you two won't be home for Thanksgiving Day. I do know that Ivy will be discussed at our Thanksgiving table as we talk about the things that we are most grateful for this year. I pray that after all you and she have been through this year, there will be many, many beautiful, magical, healthy Thanksgivings to come where you will be together with your whole family celebrating the amazing things that transpired in Boston this year to give your miracle girl (my hero!) a healthier heart and a bright future. We are thankful that you have shared Ivy with us. I've learned so much from your love and courage and from Ivy's strength, determination, and joy.
Wow. Ivy looks great! Did you get a better room? Looks like maybe you got a window seat this time? Really wonderful that you can get outside.
J
I deal with out of whack INR levels weekly. I normally run by the lab on monday morning, then if it isn't "perfect" we do another on thursday. Our bodies respond differently to drugs at a moments notice. There are many mitigating factors on why it is "up" or "down". Practive makes perfect! I also like the idea you can test yourself at home now! Makes it perfect for me! No more co-pays! I call in once a week unless I have a number(s) that start trending. I'm sure there will be plenty o turkey for Ivy Joy!
Tracee
Great update! She looks awesome! Love the photo with the broccoli! Alexandria saw her pictures and said, "Look Ivy is getting all better!" So hopeful you'll be home soon!!!! We will keep praying for her always.
Annette, John, and Alexandria
Love to see that smile, almost like, "we are breaking outta here!" Soon little one, soon!! :). Praying her levels get where they need to be ASAP, no fluid and that she'll keep eating greens to make that happen! That broccoli face is priceless, "you want me to actually eat it?!" ;) So glad she did! If you have the ability, we buy pre-cut/washed kale and I broil it on low w/ olive oil and sea salt to make kale "chips" and A & C will actually eat it! :). You can also buy them pre-made at Whole Foods but it's very expensive! Many things for all of us to be thankful for this Thanksgiving!! Can't wait to hear the good news y'all are heading home soon too!!! Happy Thanksgiving Mary, Ivy and the whole S family!!!
Love, the Harlickas
So glad that Ivy continues to do so well and her spirit is being healed too. I'm excited to see ow she will thrive once home and feeling completely secure again. Praying you home!
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