Almost six weeks- That is how long she has been in ICU (minus the two days she was home last week). To say that this has been anything less than terrifying would be an understatement. She has been intubtated twice, had 4 central lines placed, callapsed a lung, had a chest tube placed (which drained 2 liters of fluid from her lungs), placed on dyalisis for a week, had two major life threating infections, her blood pressure is really high (132/90) and she is the highest dose of iv milrinone (which she cant go home on). Funny thing is, milrinone is suppose to lower her blood pressure, so now she is on a new drug called Cozaar which is suppose to help lower her blood pressure. They are going to do a Dobutamine Stress Test on Monday to rule out further damage to her coronary arteries (she was diagnosed with transplant related coronary artery disease in 2006).
Just typing that makes my heart hurt. Her little body has been through so much this past 6 weeks, and she still has a long way to go before she is back to her normal Emma self. I have been going home at night because my other two children need me too, yet I am torn between the three of them. I can only do so much, yet I feel like I am not doing enough. I am tired, but then I think about her and think how much more tired she must be.
She was suppose to be discharged today. We were on our way home today. That is what I am most angry about. I just want her to be home, safe and well. I just want my daughter back. I hate seeing her in pain, yet somehow she continues to fight.
The doctors say that she is in control of this ship, and we are just doing what we can to guide her back to health, but in the end it is all up to her.
And all I can do is sit by and watch.
Praying Heather.
Heather~ I can hear your heart ache and am so sorry for it. As moms we do want the best! The best for the sick ones AND the best for the ones at home without us too. I am praying for patience and strength for you now as you try to understand all the docs say, figure out what to do next, and how to handle your sweet family at home. Your Emma is precious and we will wait, sit, and pray along with you.
Praying for you and your sweet babies.
I’m so sorry you all are going through this. Continuing to pray!
So sorry you are going through all of this. You are all in my prayers.
JoAnn
Praying for you and sweet Emma. God is with her and with you.
{{{Heather}}} Praying for you, your sweet Emma, and your family at home. How is your own health (besides exhaustion) holding up through all of this?
I had no idea…though she was home with you. Praying, friend! Praying for your girl. Love you! Holly
Continuing to pray, dear one. Holding you all close to my heart.
Praying for Emma and your family. I’ll be praying for peace and strength during this time.
Also, praying for wisdom for the doctors. Just keep remembering Heather….God is in control of Emma’s ship and in the end it is all up to Him. Take peace in that thought Heather. She has the physician EVER God!
I meant to type….She has the BEST physician EVER God!!
Wow. Praying for you guys. ((hugs))
Heather – Your family is in my thoughts and prayers. I am so sorry your little girl is in such distress and pain and I hope tomorrow brings a new, better day for her.
I cannot imagine the ache in your heart. Your whole family is in my prayers.
can I add my prayers, Heather,
Heather so heartwrenching I can hear the frustration and sadness in your post. I am praying for Emma now as I type and will continue to hold her up in prayer. I know you are trusting the Great Physician, and a mighty one He is! Love to you all, Maureen
Praying right along with everyone, dear Heather.
Prayers continue from here, too, Heather.
I am praying, Heather, for all of you. Mark and the kids at home, too. I have no other words, but know I love you.
Oh, Dear Heather, I am so sorry you all are having to go through all that. Praying for you all ~ Love and Hugs ~
Heather – I thought she was home and all was well! Praying she will be soon and praying for your strength!
Heather~ My heart just breaks for you as I read this. You and your family have been through so very much. I will be praying for all of you. May God give you the strength and courage to get through this.
)
Lisa in Texas
I’m praying, Heather!
Hugs and prayers.
praying for your precious baby girl
& you too
praying you feel His arms around you now & His peace that surpasses all understanding.
praying her pain is done & that her little body does what it needs to do to get back to health
I cannot imagine watching one of my babies go through something like this. May God continue to bring you peace and strength. I am standing with you and praying for healing for your sweet Emma.
Praying Heather. I am sure you are both physically and emotionally exhausted. I’m praying that your own health holds up so that you can continue to minister to your family. I love you.
Continuing in prayer for your whole family.
XO*Tricia
hugs and prayers for all…
I am praying.
There is nothing harder for a mama than to watch your child in pain. and not be able to help.
Oh Heather…… so sorry for the ache in your “mommy’s heart”. Please know you are being lifted in prayer daily by many. Let the Father hold you close. {{HUGS}}
Heather,
No words can express whats you are going through or the challenges that you face but I know that God knows your name. He knows every single moment and the fear and all those feelings that go with it. Hang in there. Praying for you
Elizabeth
praying…
Continually praying!!! Come on MEN….they need us praying also! We’re here for you however we can be Heather! Love you guys!
Hi Heather,
I’ve been a lurker to your blog for a few years. I have been praying for you. I’m so sorry you are going thru more challenges. I can imagine the ache you are feeling. 4 of my children were born into the NICU and one almost didn’t make it but she was resuscitated and then had issues for a period after. Praying for the Lord to cradle your family and love you thru this. Praying for healing and tests results to return to a normal range.
Blessings, Heidi