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Wednesday, April 24, 2013

Ivy Joy

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 We are approaching 2 weeks here in the hospital and both Ivy and I are ready to bust out of here! She is such a trooper, honestly, if you could see this child's demeanor you would melt! As do the doctors and nurses, a true super star with cuteness and a voice that makes you smile instantly to tie it all together!
This morning she said, 
Mommy, I sad 
I told her it was ok to be sad but what was making her sad?
She said, 
I missin Daddy and Bubby and Catchidy, and Ryree and Kinsie and Wexie. I missin my tower and my couch and my home and my carseat. I need to peel eggs in my tower and I need my swimsuit. I goin swimmin after bwekfast! 
I am trying my darndest to get this baby out of here. But she is fragile and we need to be careful.

So this is where we stand...
Ivy is off Milrinone (IV heart failure med) and doing just fine without it for now.
She is came off her last IV diuretic yesterday afternoon. She has had her PH meds ramped up to the highest dose and we feel it must have relieved some discomfort because yesterday she walked the hall, up and down 2 times which is more exercise than Ivy has seen in a very long time! Her legs were quivering from having been sitting for 2 weeks but she pushed herself and insisted. When she was done.... she rested the rest of the day lol! She is on a new heart failure medicine as of just last night. We will be raising the dose of it over the next 48 hours. She is tolerating it well.

We found out that Ivy has zero antibodies. This came as a complete shock... and if you know about transplants already then you know this is very good!

We have an appointment at Lucile Packard Children's Hospital in Northern California on the 7th of May. This will be our new hospital away from home. (We are originally from Northern California)
We will be spending at least 3 months there after Ivy is discharged with her new heart. It is close to family and close enough for visits from Daddy and the bigs if they happen to be in school at the time. We will be able to wait at home for a heart and once we get word, we will fly (quickly) to Lucile Packard. 

Our hope and prayer is that Ivy will come home by the end of this week or early next week. Hold her own with these oral meds. Have her Birthday at home a few days early (her party is the 4th) and then head to California on the 6th (her Birthday) for the all day, outpatient appointment on the 7th. 

We are also praying that she can take a regular flight, not a med flight. (because with transplant ahead, we need to save those insurance dollars). We were advised not to drive since it would be hard on her little body to travel for such a long time. We will need to take oxygen on the plane so we have the whole airline thing to deal with as well. All my wheels are turning, I know what I need to do, now I just need to do it! (but honestly.... I just want to take her home and pretend life is about to get easier...hahahaha, whatever right? Not Gods plan! He likes to keep us on our toes! 


So thats about it. We are doing good. We are still processing how this will all work. We are anxious for answers and of course for another 4 months away from home. For those wondering, yes, Lexi will be traveling with me this time! Praise God!! And during any time that there is no school, the bigs can be with us as well. 

The prayer request to get us out of here is just for Ivy's INR to get therapeutic again and to continue with no problems. We are still holding on to hope that it be this Friday!!! 

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with  hope by the power of the Holy Spirit.   Romans 15:13



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19 comments:

Jane said...

Thank you for your update. I will keep praying for Ivy. I pray that she will be able to celebrate her birthday at home and have a safe trip to CA. I'm so glad Lexi will be along for this next, so important, phase of your family's life. You are amazing Mary. God Bless You All!

likeschocolate said...

Ivy is constantly on my thought and prayers!

Kelleyn

Anonymous said...

My Dear Friend,
Not a day goes by that I don't pray for Ivy and for you and Bryan. What a blessing that tiny girl is too me, and to so many all over the world. Some day, long from now, in Glory, I know that God will tell Ivy "Good job, my good and faithful servant." It is only then that I think it can be known completely how many people have come to a saving knowledge of Jesus, have opened their hearts to His abundance and mercy because of one tiny girl. My son is but one whose life will be changed because of Ivy's testimony.
Love and Prayers,
Amy, Ben, Maisy, Moxie, Bobby, Abby and Patrick Root

Jane Doe said...

So does she already have a heart waiting for her? That would be so wonderful.

Lori in Texas

maggie k said...

Thanks for the update. Not surprised at all that the drs and nurses are in love with Miss Ivy - we all are! I am keeping Ivy and your whole family in my prayers. Love to all MK

Cynthia said...

You raise me up to more than I can be. Praying for Ivy without ceasing, and all the family,too. I find myself holding my breath as I return to your blog....so hopeful you will have posted. Thank you for sharing your heart. May the Lord bless and keep you close....

Anonymous said...

Mary, Continually keeping sweet Miss Ivy, you, and your entire family in my thoughts and prayers.
Thank you so much for this update. I hope you will be heading home this Friday! ~Holly

snekcip said...

Ivy Joy spreads JOY with all who have come to KNOW HER. Prayers from TEXAS! Keep AMAZING us sweet girl!

Catherine said...

Still praying for your littlest love...

Anonymous said...

Mary and dear Ivy Joy and family,continuing to hold you all up in prayer<thank you for updating !! God Bless !Cathy in Illinois!!

Fannie said...

Ivy and her egg pealing!!! It is so cute and funny!!!! :) I am so amazed at the fight in her!! I am so, so glad her Lexi will get to come to Cali too!!!! You guys are in my constant prayers!! I know God has a plan for our little Ivy Joy and even though it is a difficult one so far, I am praying for her healing! Prayers as always Mary!!

sierrasmom said...

Praying that Ivy gets home soon! There will be many here in NY praying for your girl!

Aus said...

Thanks for the details - you are in our prayers always!!

hugs - aus and co.

Anonymous said...

Mary, of course you don't know us, but my daughter and I have been following you and Ivys story...We live in Carmel by the Sea. if the decision that is best for Ivy is to go to Stanford, We just want to wish the best for Her. Maybe there might be a chance in the in the coming months, that we, Stacey, and Ryleigh (XinYi) could come and visit, and bring the Girls a surprise, which I would consult with you first......we are friends on facebook........Gyll Meyer

bbmomof2boys said...

LPCH is a wonderful hospital - that is who I support for my job!!! :) Ivy is such a fighter and she and your family are in my prayers.

Go Ivy Go!!! Show'em that you are a tough little cookie!!

Lesanne said...

As always, we are praying for your beautiful doll and all of you!!!
Leslie and Julianna

Lesanne said...

As always, we are praying for your beautiful doll and all of you!!!
Leslie and Julianna

John & Michelle said...

Still praying in Athens, AL!!!! GOD is sooo Good!

embraced by grace said...

I've been following your blog for a couple of years now. Thank you for displaying joy in the midst of so much uncertainty and long days. God Bless you for loving the orphan and being an Godly example and showing us all compassion. Krista

 
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