Today finished much better than it started for Hope. She woke up at 2:30 am and was fussy from then until noon today. No matter how many times she was given her pain meds or her sedatives, she was simply not happy. At noon, she finally fell asleep and remained settled for the rest of today. It is so painful to stand by and watch her cry when you're not able to do anything for her. It was such a gift to snuggle her while she slept peacefully in my arms today.
They are pretty sure that Hope is REALLY hungry. This makes sense, she has not received any food since Tuesday. She was not even receiving her liquid nutrients, only sugar water. They started her back on the liquid nutrients tonight and are hoping to start dripping in some food tomorrow. I'll feel so much better when she starts receiving food again.
Hope's face is extremely swollen. The last time I saw Hope that swollen, her SVC (main artery to her heart) was clotted off and she was near death. It's difficult to see her like that and not panic. They haven't found any major clots at this point, nor have they really looked for them. Hope is finally getting a low dose of blood thinner into her body once again. We ask you to pray that it's not too late and there are no life threatening clots already in existence.
Tomorrow they are planning to put a small scope down Hope's throat, while she's awake. The scope will be too small to do anything, other than look at what's there. Please pray that they don't see anything in her esophagus. This would have them conclude that she has a bleeding ulcer, a much more positive diagnosis for her.
I feel like we're currently living on the edge. We're waiting for more terrible news, or another terrible day with Hope. I really need a day with Hope awake, smiling and content. I miss the Hope that we know is inside her and long to have her back. I dream of taking Hope home one day, it may be a pipe dream, but it gets me up each morning. Please continue to pray for Hope and our family, this is a difficult road.
Oh Amy, my heart breaks along with yours as you watch your sweet little Hope suffering. I am begging God with all of my being to intervene and heal Hope. She is already such a miracle and tremendous witness for people all over this world who is following her story and praying along with you. You are an inspiration to us all. Your vulnerability to show your pain as well as your unwavering faith has deeply touched us and strengthened our faith. I have grown to love you and Hope even though we are miles apart. I will continue to pray and I send you my love. <3
ReplyDeleteAmy, thank you for sharing your difficult journey. Although I don't know you personally, I am a fellow believer who is praying for your dear daughter, Hope. Thank you for being real with your struggles and your incredible faith and for sharing specific prayer requests. Continuing to pray for you and your precious daughter, whose life has impacted so many! Marsha
ReplyDeleteHi Amy, I just recently started following your story. We found out a few weeks ago that our little boy, Caleb, (22 weeks in utero) has what they believe is a complex form of HLHS. My husband and I are still a mess in some ways as we process this news, but I have been drawn to your story and your desire to see God glorified in all of this as I've read some of your journey. I have been heartbroken for you this past week as I imagine the intense pain you're going through as you watch Hope hurt. I am checking your blog frequently and praying for you and your husband that God would wrap his arms around you as you wade through this uncertain time and begging God for a miracle for your baby girl. This may be a song you've already come across, but it puts into words well my prayer as I set out on this difficult journey that you're already in the midst of. I pray that it will be a help to you as well:
ReplyDeleteI want to hold on 'cause I'm afraid
And I didn't ask for it to be this way
Somehow I found myself caught in the grey
Reaching out for fear, running out of faith
You know what I don't
So help me to let go
You're in control
So help me to let go
I want to let go
I want to let go of what I can't change
'Cause I can't wrap my mind around Your ways
I've got more questions than I have answers these days
Please don't let my suffering go to waste
You know what I don't
So help me to let go
You're in control
So help me to let go
I want to let go
These are the moments it's hard to believe
So please help me, please help me
These are the moments of surrendering
So please help me, please help me
'Cause you know what I don't
So help me to let go
You're in control
So help me to let go
I want to let go
Here's a video link to the song with the music:
http://www.youtube.com/watch?v=aKkHi5lJ4yc&feature=related
If you're still at Children's Hospital in Calgary, I might suggest asking to be transferred back to Edmonton as quickly as possible. ACH is not a good hospital. We have watched them ruin more than one life with poor care. We've been unfortunate enough to have had them involved in our child's care, and it was a complete disaster.
ReplyDeleteMy family and I have been reading the past few days. Our hearts and thoughts remain with you.
Praying for your daughter Hope that God will take her in his arms and heal her little heart and stop the pain. And for you and your family, that you will have courage and strength, along with comfort in knowing that God is in control, and he loves all of you. You are a testement to your faith. Thank you for sharing!
ReplyDeleteDear Amy, My heart goes out to you and your family, she must feel so loved and cared for when you hold her in your arms. I have been reading your story and am amazed at how brave and strong you are to write this journal everyday and share journey with all of us. I know that it is only by the grace and strength of God that you are able to do this, no human being could keep this up for 7 months 24/7. I am so glad to hear that you have such a close supportive family, that is also a blessing from the Lord. Today I have
ReplyDeletee-mailed, facebooked and told your story to my friends and have asked for prayers from the UK, Australia, US and back to Hamilton you are covered in prayer, I pray that you feel his love and peace all around you and your family and that miracles never stop happening in Hope's recovery.
Amy,
ReplyDeleteMay the doctors have wisdom and precision. May you have confidence and reassurance. May Hope have comfort in knowing we are all thinking of her. I know too how hard it can be to put your trust in others to look after your child. Please know that you put your trust in god and there is no better bank to invest in. She WILL pull through you will pull through.
Love in Christ
Amy, I have been praying alongside your family the past month as I've heard your family's journey. On Friday or Saturday when I was praying for Hope I got a picture. I hesitated to share it; but I feel the Spirit impressing upon me to message you today about it. I got a picture of a pure white box with a beautiful white bow ontop- like a gift box as I was praying for healing for Hope. The next day (as we are ahead in time here) I checked your post. You had mentioned you & your husband had been talking about miracles & how incredible should the Lord give Hope a complete heart. My heart paused & the picture returned to my thoughts. Again I did not message you about it; but this morning as I was getting ready, I felt the Holy Spirit just remind me that good things come in gift boxes. I am not certain what more means than that; but just want to be obedient in sharing. Nothing is impossible for the Lord. His plans are good; I can empathsize this does not feel good at present, but I am standing in faith with you for healing & that God will be powerfully glorified in Hope's life! Believing for an encouraging day for you all! And the Lord's incredible peace and rest. ~ Norway.
ReplyDeletePraying Amy...for many things. Including the miracle it would be to someday have Hope at home with her family.
ReplyDeleteHi Amy,
ReplyDeleteMy name is Joshua Gordon, and I'm a friend of Deanna Pearce. My wife and I have 3 kids, and my middle daughter spent 5 days in the hospital last year with a pretty crazy infection in her lungs. She was never really at death's door - but my heart still stops when I think of what might have happened.
Since then, God's revealed himself to Sarah and I in incredible fresh ways, and I believe with all of my heart that today, when faced with a crisis I can have peace. It doesn't matter what I feel. It doesn't matter what things look like, the TRUTH is that Jesus is with me, and his grace is pouring over me with a waterfall. We are greatly blessed, highly favoured, and deeply loved.
It boggles my mind that God loves our kids more than we possibly could. It blows my mind even MORE that God loves ME more than I love my daughters.
Be encouraged. Don't examine the problem looking for cracks. Expend your energy embracing Jesus with every ounce of your being.
We're standing with you today. You're not alone.
- Josh and Sarah Gordon... and Piper (3), Vienna (2), and baby Shire (1 month).
Continuing to send healing from many sources in Ontario. Praying that the love extended to Hope from so many corners of this world is also helping her heal.
ReplyDeleteAmy, I want you to know, my whole family is wrapping our arms around you in prayer. We are speaking life and healing over your child and earnestly coming to God on your behalf. We also admire your courage to stand up to the medical group even when you're not making friends doing so. Keep up the fight. You are doing so very well.
ReplyDeleteWe are praying for Hope. I've been crying out to God with my issues a lot this a.m. and then I read this post and my heart melts once again for other members of the body suffering even greater things than I. Praying for you all! May God comfort, heal and shower His love on you. Praying the doctors and staff can be proactive to resolve things quickly and help Hope get well. You are loved. You don't know me or my family but you know Jesus and we do too....we are one family united in Christ. We love you all and are keeping you close to our hearts and in our prayers.
ReplyDeleteIn Him,
Elizabeth Gaasenbeek
xoxo
I have been reading your blog for a few weeks- praying alongside you. Just wanted to let you know that we lifted your family up in prayer at our morning service yesterday.
ReplyDeleteHi Amy,
ReplyDeleteMy girlfriend shared your blog. I'm glad she did, now you have one more prayer for Hope to get better. Please don't give up, she needs you now more then ever. I can't imagine how difficult it has been but please reach out to your family, friends and church when you feel like you need a break. You are not alone.