slide show

Wednesday, August 15, 2012

6 months together! Forever Family, Forever our baby

Pin It

I am desperately attempting to keep the thick emotion out of 

this post, but my heart is aching with it. Baby girl was handed 

to me 6 months ago today. I knew that 6 months from that 

day, she would finally be healthy. That all her waiting would 

be over and she would finally have health. 6 months later, she 

does not have the endurance to walk, to get in to things, not 

able to maintain enough stamina to get through a simple 

horsey ride on my knee. I do not want to be angry 

about her crushed coronary artery and I have no right to be, 

but I do have to grieve. And so this week I have allowed 

myself that. I wish I had not. And yet at least now, I can move 

on. Shaken? No way! Give up? Never! Frustrated? You bet! 

But there is nothing, nothing, nothing, I would not do for my 

perfectly perfect little girl!






Our scheduled upcoming Thursday appointment happened 

yesterday due to a 104 temperature and a cough that just 

persists.  

And so it was time to ask more questions, even if the answers 

were the last thing I wanted to hear.



What I was told is that Ivy's valve leakage, mitral valve 

regurgitation, is heavy. Just as heavy, if not heavier. It is 

backing up. Her heart failure is now elevated. Her body is 

tired. She is on the highest dose of every medication possible 

and she should be getting better. But she is not. She catches 

everything the wind blows her way. She has strep right now. 

She is not able to do more than stand in one place or sit and 

color or read books without tiring so much that she needs 

another nap. She occasionally gets a sudden spurt of energy 

and I jump for joy and think everything is honky. I post on 

here that she is doing amazing and getting better..... but it 

never lasts. A week or two later she is back on the couch, 

back to dozing off 5 or 6 times during a day, back to having 

cough attacks and back to being sick! 


And I wanted answers... So I asked questions? Why is she 

not getting better? Where are we going? What is the plan?

The reply~ "Mary, you are right, she is just not getting better. 

Based on all the medication she is on and has been taking for 

a while now, she should be doing really well. 

But she isn't.

We are going to discuss attempting to repair that leaky valve.

But Ivy really is at a huge risk with that crushed right coronary 

artery and there is nothing we can do about it. Bypass on a 

child like her leaves grim results. But she has a pacemaker so 

you won't have to worry about sudden death." 

And then she said again, "She is at a very high risk."   I asked 

what the plan was for that? The time frame, the other 

options? She said that they would be meeting this week to 

discuss Ivy and when they see Ivy again next Monday they 

could better answer that question. 





Will you pray with me?  As I relinquish our tiniest treasure to 



her Maker and plead miraculous healing. 



You have traveled this journey with us, often carrying our 


heavy burden. You too have this child endeared in your heart. 



I won't pretend to understand God's plan. And yet we cling to 


the knowledge that He is loving and continues to be in control.   



Despite the lack of control we feel. 





Next week, as you get set to start your babies in  




school or whatever new endeavor you may have ahead. Take 


look at all you have, all they have. And give a huge thanks 


for even the fights your children have. For the broken glass 


and fingerprints everywhere, for the fussy times and the 


temper tantrums. For the power struggles and the 


disobedience. For the foot stomping and the messy rooms.  


Right now we give thanks for the good fight our daughter 


struggles with every single day. I would rather it be a fight 


between my children, but instead it is a daily fight, for Ivy, to 


simply live.


"Wait on the Lord, be of good courage, and He shall 


strengthen your heart. Wait, I say, on the Lord." Psalms27:14




Specific prayer request~




Please pray for God given wisdom for her Dr's as they review 


her current and past Echo's, blood work and last Cath 


findings. It will be viewed by her surgeon, Dr Nigro, her 


Cardiologist, Dr Pophal and her Nurse Practitioner. There 


will obviously be very important decisions being made on her 


behalf. Pray specifically that God will guide each one involved 


in her care. That everything would be uncovered, nothing 


would be missed. Pray for God's undeniable insight for this 


medical staff.




"Any man can sing in the day.  When the cup is full, man 


draws inspiration from it.  When wealth rolls in abundance 


around him, any man can praise the God who gives a 


plenteous harvest… The difficulty is for music to swell forth 


when no wind is stirring.  It is easy to sing when we can read 


the notes by daylight; but he is skillful who sings when there is 


not a ray of light to read by -- who sings from the heart… Lay 


me upon the bed of languishing, and how shall I then chant 


God's high praises, unless He Himself give me the song?  No, 


it is not in man's power to sing when all is 



adverse, unless an altar-coal shall touch his lip… Then, since 


our Maker gives 'songs in the night' (Job 35:10), let us wait 


upon Him for the music."     Charles Spurgeon.


Praying that God will bring forth music from this difficult but 


forever worth it journey. Pin It

61 comments:

Anonymous said...

I'm so sorry to hear that she isn't doing so well, I am thinking of her and sending my prayers and good wishes from Liverpool, England.

Katie

Carmen said...

Oh Mary you are right that your little peanut was placed in our hearts so that we may intercede in her behalf. And pray we will - for the doctors, for Ivy, for you and your family.

PS. Read psalm 23 and let those verses calm your spirit.

Teachn18 said...

Continuing to send prayers up for your precious baby girl. May God give wisdom to the doctors and healing to your baby girl.
Krissy

Paige said...

Oh Mary, I was praying for sweet Ivy yesterday and just had a heavy feeling. We will be praying specifically for each and every need. Just this morning I was up worried about all the ins and outs of Janie's two upcoming surgeries, just worrying and planning. I went ahead and got up at 5 since I could not sleep and what did my devotion say but " we must go through many hardships to enter the kingdom of God" acts 14:22. I was so overwhelmed with my own desires that I forgot to remember that God called us to this child and it may not be turning out as pleasantly as I hoped but he knows this and more. I say all this in that I " get" a teeny bit of what you all are going through. I am praying for peace and perserverence for you and your sweet family. I am begging God to heal sweet precious Ivy and give her a life of jumping, squealing and running around. I am praying that this is a season of your lives that will explode with joy as you watch her heal. Hang in there and knows many are interceding in prayer for this sweet child. Hugs!!!

Jboo said...

Praying for your sweet girl and yor family. I know this is so very hard.

Sherri said...

Oh i'm so sorry your Ivy isn't feeling well. I will pray for your sweet girl and that her healer heals her. May our Father helps the doctors figure out just what is wrong so that they can begin the healing.

Sherri

maggie k said...

Mary - I am so sorry that the news is not what we all have been praying for. Of course I will continue to pray for Ivy and her doctors and you as well. Love to all

The Harlicka Family said...

Mary,
We are praying for all you've asked and more for sweet, precious Ivy and for you and your family. My heart is aching for her and for her amazing mom, and I'm asking God for a miracle for Ivy!
Much love,
Kendall

Renee said...

I will be praying for Ivy and your family. God is so big ,so awesome and He knows all the ins and outs of Ivy's beautiful body.

I will be praying specifically that her doctors will know those ins and outs too...that God will guide them to the perfect plan to help Ivy.

God put a song in my heart this week " On my knees " by Jaci Velasquez.

"I get on my knees ,I get on my knees. There I am before the Lord
that changes me, see I don't know how but there's power when I'm on my knees"

...know that I will be on my knees in prayer this week for your sweet baby and your entire family.

redmaryjanes said...

God Bless you and your family Mary. Prayers coming from Michigan for your sweet girl.
There are tears in my eyes, but hope in my heart.

Kimberley Girvin

Wendy said...

Saying prayers! I hope the doctors find the right path to making your sweet daughter well

jennifer said...

Praying for your sweet girl and your precious family. Praying for the joy that comes in the morning.

Mary said...

Our prayers are with you all, most especially your sweet, beautiful girl.

Leah Mei said...

We are praying for healing for your sweet baby girl as well as strength for her and you entire family.

3 Peanuts said...

Mary,

You have my whole hearted prayers. I am going to pass this post onto the Moms group at my church and get them praying too.

Kim

Lainie said...

Mary - the power of prayer is so real and so strong! You have such great faith and such a wonderful group of loving friends and family.

I know how frustrating it is to not get the answer that we want from our prayers. We have to trust that the Lord knows us and is mindful of us and what we are asking for. He loves us and doesn't want to see His children suffer.

I am so sorry that you have to watch your baby suffer and go through this trial. I can't imagine how hard it would be. My situation with Brian's cancer is a totally different situation, I understand that, but I do know how hard it is to be the healthy one and watch your loved one suffer. I would do anything to take the pain away from him and be the one who is sick. I'm sure you are feeling that too, with Ivy.

Your sweet family is always in our prayers and in my thoughts constantly. You are incredibly strong and Ivy is blessed to have such a great mother. Hang in there!

Lainie

Yvette said...

Hugs my sweet friend. We of course are praying. I am not sure if you have read the poem Welcome to Holland but it occured to me even for heart babies it applies.

(skip the dwarf part in black)
http://bringinghomeholland.blogspot.com/2011/01/our-journey-with-dwarfism.html

dawn said...

Ok I just have to say it because I panic, it's what I do. I'm sorry Im not a calm person I have to "do". Is there another hospital? I'm sorry I said it really I am cos I know yours is amazing cos if it wasn't well Ivy wouldn't be as well as she is. And I know you have thought of it too. Oh gosh.
Sending you blog to all of my friend right now so that they can share her in their prayers

Davey, Lauren and Ava's proud mom said...

I am praying for your precious tiny daughter. I am rejoicing that she is held dearly in His hands... Can't think of a better place for any of my children! God has every day of Ivy's life already planned and He knows exactly what she needs. I will be specifically praying that His plan for Ivy is made very clear to her doctors.

Hold tight little girl...your prayer warriors have you surrounded! We all love you and want only God's best for you! No hindrances!!!

Lori Sloan said...

I am definitely praying for sweet Ivy, your family and your medical team. Miracles happen every day... I hope that you get a big one very soon!

kim647 said...

God bless you and little Ivy. May he lead your family in the right direction. Hugs

Jennifer P said...

Claiming graititude, God's grace, peace and love for Ivy. And Joshua.

Anonymous said...


Mary, so GLAD that you have shared this now , we, the praying folks , can get on to what is specifically needed for sweet IVY and her family!! Praying for IVY,you, the drs. and nurses and all involved with the health of LIL Sweetie! Continued prayers, and blessings, Cathy in Illinois

Anonymous said...

I am praying for you all- she is such a beautiful little girl and I can imagine how hard this is for you too, Mary. I know you don't know us but we keep little Ivy in our hearts and prayers!

Best,
Antinette

Preppy Pink Crocodile said...

Praying...

KK

klc112792 said...

Mary,
I'm sure your doctors have done the very best they can but sometimes a fresh team may have a different approach. I was a nurse a Children's Hosp. Boston and I know they are ranked No. 1 in the country. Why not see if they will just look at her chart and see if they concur with what is being done? Carol

Anonymous said...

I have been following your blog for some time, I came across it one day and have been following every since.

Although I don't know you, I am praying for your little girl everyday.

Rachel from Canada

From This Moment said...

Praying for your specific requests, sweet Ivy and your whole family!!

Sharon Ankerich said...

There are no words to make this better. Only prayer!!! I am praying for all your requests. Please know we never stop thinking of you all!!! Xoxo

the meaklims said...

My heart breaks Mary, we continue to pray nightly, and I will acknwledge that there are times that I forget, but my 5 year old has never forgotten your daughter.

On that note, the Lord has never forgotten your beautiful Ivy Joy... her heartbeat is in the palm of His hand.

I'm so glad you posted this because I really did think she was doing better, in fact, I read out your last post to my husband, he too was born with heart disease and has a leaky valve, so your daughter is very precious to us... and has been on our minds this past 6 months - I'm glad we know to pray now, more specifically.

May the Lord give you strength as you watch your daughter endure this, I can't even begin to imagine how hard it is.

All our love.
Jill

Anonymous said...

Prayers are going up all around. I too have watched and cried and been amazed by Ivy's strength your strength and that of your family to endure all that you have for the last 6 months. God called you and you took a leap of faith and went, which is so inspiring to others. TEAM IVY is in full force.

Isa + Steph + Sijia said...

I'll keep your Ivy in my thoughts and pray for her, for you, your family and for her doctors.

No doubts it's difficult time... can only hope that days, weeks, months see steady health improvements for your precious Ivy.

isa

Shawn and Ragena said...

Your heart is in the right place, no words I can even try to think or say would be enough. We have prayed and are continuing to pray for your family and sweet Ivy! Where 2 or more are gathered together...we all are praying specifics over this life.

ashley said...

Mary, Ivy's journey has so touched my heart. I pray for her daily, and I will add to that your specific prayer requests. She is so beautiful, breathtakingly beautiful. I am so very sad that she continues to struggle. She is so precious and she is so loved. My love and prayers go out to you also, to your lovely Lexi and to the rest of your family. God is everything and He knows the burdens of your heart. He will continue be at your side, at Ivy's side, always.
xoxo Ashley

Anonymous said...

I will be praying for Ivy and her team of doctors....I am SO sorry your family is enduring such setbacks. I will BELIEVE that she will be healed miraculously!

Ellie said...

Oh my - my heart is just breaking for all of you!. Please know you are being lifted up and I know that God holds you in the palm of His hand.

Praying your mourning will be turned to dancing!

xo ellie

DiJo said...

Dear Sweet Mary,
As Ruby went to bed tonight, I listened to her prayers.. She said, "Dear God, please heal Ivy Joy. And, God could you help her to have a good day tomorrow.. Amen!" The girls continue to pray for their little pal they have never met in person. And, I continue to lift up my sweet friend who needs to know God is with her.. No matter what, God chose you to be her mother. He KNEW without a doubt that you would love her, care for her, and glorify Him through it all.. He knows your hearts desire. And, I trust that He will provide. Ivy has touched so many people. And those special people are standing in the gap for you now... Team Ivy is not going anywhere. You are all LOVED!!!! Hang in there my friend.. And, anything you need, please don't hesitate to ask!! Love you! Di

Lesanne said...

Dear Mary,
We are thinking of and praying, praying, praying, praying for your sweet little Ivy and all of you.
Leslie and Julianna

Jane Klingenberg said...

Dearest Mary:

Di emailed me to ask me to join in praying for precious Ivy. Sadie and I are in the hospital in Chicago, so I wasn't.t aware that Ivy was struggling right now. My heart aches for you and with you.

Right now God is not answering our prayers for Sadie in the way I had hoped for. It is a daily task of trusting Him. I am lifting you and precious Ivy up Right now.

With care,

And a big hug,

Jane

Lori said...

Mary~ Know that you are not alone... So many care about you and your precious Ivy! God's grace will be abundantly sufficient... One breath at a time! Praying for you to sense Him near...

I'm embarrassed to ask, but is transplant an option for Ivy? I'd love for you to join the journey with me! ;-)

Hugs tonight, Lori McCary

Sherri said...

Mary,
You are so brave (and so is Ivy Joy) and provide such a poignant example of praising God "in the storm". Each of us faces different struggles, but it really is a choice how we look at it. I can only imagine how hard this is for you, but I know, without a doubt, that God knew hat he was doing when he chose you to be this precious child's mother. If she must endure all of this, at least she is doing it with you and your family's love, prayers and tender care! I will be praying for Ivy, for you and your family, and especially for the physicians who are trying to decide how to help heal her little heart and lungs.
Love from NC,
Sherri

Catherine said...

Praying, praying, praying. Lifting your precious lamb before the Great Physician.

Praying for you too.

bytheriver said...

Prayers are with you. Thankful that though we have come through many difficult times with our girl, she is healthy and happy coming up on 7 years home.

Ivy is a beautiful girl. Praying for her oxygen, for a full evalution, no stone unturned and for wisdom in establishing a plan of action for her.

Praying too for God's miraculous healing of her heart.

Carrie G. in MN said...

Mary,
I found your blog via Kim at Three Peanuts, and I was so excited and hopeful for Ivy's future when you brought her home. I am very sad to hear she is still so seriouly ill, and my daughter and I both pray and pray that her doctors and the specialists looking over her will be guided by God's wisdom and grace. She looks like the sweetest girl ever, and I am praying for a miracle.
Carrie

jules said...

I am sending you, Ivy Joy, your family and the doctors all of my thoughts, prayers and good vibes. I am so saddened to hear that she is not doing better and has to face more surgery!! We don't know the plan, or the reason but know you are faithful and will just follow the lead.
Ivy is often in my thoughts and trust me I stop in my tracks when I feel the bit of stress that my almost 4 year old brings and remember to be grateful that she is healthy and full of energy. I am prayful that Ivy Joy will be full of energy and into EVERYTHING in no time.
I do not know you, but your family and you truly are in my thoughts so often and I am so sorry that you have this mountain to climb, but feel strongly you will come over the pass with a miracle in hand....she is the tiniest super hero around!!!

Shawn said...

Mary - I will continue to hold up Ivy in prayer for miraculous healing and wisdom for her doctors and strength and peace for you as well.
My heart aches for you and for Ivy.
Shawn

One Happy Mama said...

Prayers for that sweet baby girl and for you Mary. Prayers and hope is all we have ~Nancy

Suzanne said...

I am praying with you. Ivy is such a sweet babe!

I returned from China with my little girl on June 6th. She had OHS on July 25th, having waited 3 years for a repair. She was bron without a pulmonary artery and she had a Contegra implanted, as well as having 3 holes patched. She is doing amazingly well now, thank God. I bring this up because I wonder if replacing Ivy's coronery artery with such a device is an option? E-mail me directly if I can give you any more info on this: kayaksea2@yahoo.com

You're in my prayers,
Suzanne

nancy said...

Dear Family, My heart is breaking as I read your post on sweet Ivy. I am praying for all of you and so are many other caring friends and family. Our Dear Lord and special prayers will always be with your baby girl. Blessings, love, and hugs!

Rebekah said...

Praying for your sweet Ivy!

Faith Buhager said...

Oh Mary. He does give "Songs in the night". I also pray for God's peace to you for the decision the medical staff suggests to you. You are laying your most precious treasure in the treasure chest at the foot of the cross. What better place to leave Ivy.

Anonymous said...

Sending healing thoughts from me and my little China treasure to you and yours. Ivy is in our prayers. She is so brave and so sweet and so beautiful!

Anonymous said...

We will always pray for sweet Ivy. I cannot imagine how incredibly hard this is on your heart, Mary. Brings tears to my eyes thinking of the pain your sweet heart is feeling. We pray for all of you and for guidance from God for the doctors. We pray also for hope an direction.

God bless you all,
Annette Duty

Kristi said...

Oh, sweet Ivy Joy. You betcha that I will be praying for you. You are such a beautiful sweet little soul...somehow I could tell this from your pictures but it really became CRYSTAL CLEAR in a video your sweet Mommy posted of you. I wish I could see you smile in person, and give your Mom a hug. I will be praying for you sweet one!! Hang in there Mary.

Kristi said...

Mary, I agree that a couple of other cardiologist team reviews of Ivy's file is a great idea. Perhaps they will concur completely with her current team but perhaps they will think of another path forward?? I am not sure of all of the country's best cardiac hospitals for children, but I think that Boston Childrens and CHOP...and Johns Hopkins for sure, right?

Janice said...

Praying for your precious family and little Ivy. May God grant the doctors wisdom, give strength to Ivy, and favor to your family.

In our prayers,
The Dunkle Family

Marianne said...

Praying

Lindsey said...

I've been following your blog since you brought Ivy home. My heart goes out to you right now. My 3 year old (also from China) will be undergoing 2 brain surgeries in the next 2 weeks, so I know the permanent lump in your throat that goes with serious medical conditions. I have prayed for and will continue to pray for your sweet baby girl.

Lindsey

John G. said...

Praying for sweet Ivy. May you find the guidance you need to do what will be best for Ivy and may the doctors find the strength and knowledge to heal her.

We are thinking and praying for Ivy everyday.

Blessings.
Caroline

Johnson Party of seven! said...

Came to you through 3 peanuts. Praying for your beautiful family. I know how horrible it is to watch your child suffer from heart failure. Our baby got a heart transplant last July. So tough. These sweet babies are so strong and God is even stronger.

Anonymous said...

I have been following your blog for some time now. You are always an inspiration to me. I pray for sweet Ivy and your family. My daughter was adopted as a "special needs" child. Many months later she was diagnosed with CP. I too, know how difficult it is to hope and pray for improvement that comes so slowly. As moms we so want our sweet children to be "just like every other child". Please know there are many of us out there who know your pain. With God and all of us, you never have to walk alone.
Dawn B....East Aurora, NY

 
Design by Deluxe Designs