6 months together! Forever Family, Forever our baby

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 


a 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.