There was a time when the doctors sought to protect us from harsh reality. That is no longer the case. This morning the doctor told us that the Glenn may actually make Hope worse. As for the Fontan, he said she may not make it there. I'm learning to face the reality that there is a high probability that we will have to say goodbye to Hope. I simply will not give up on her until we are truly there, I have no other option if I want to be a good mom to Hope.
This afternoon Hope will be taken for another PICC attempt. It would save her from all the IV pokes and allow her to receive her liquid nutrients through it to avoid burns. We fear that it will be unsuccessful and she'll be put under for no reason. If it is successful, it will allow Hope's care to move forward. I don't believe they even have a plan B for her at this point. They will be looking to get a PICC in one of her legs as her arms are no longer an option.
Hope was supposed to have a procedure done this morning to see what her intestines are doing with food that is put through her tube. Unfortunately, they forgot to put in the order to stop one of her meds that needed to be discontinued before the test. As a result, the procedure was cancelled and will hopefully be rebooked for tomorrow. We hope they find something to explain her feeding issues, but pray it's something that we're able to treat.
Hope's Glenn is still booked for November 7th as it's the next step for her, although risky. If they find something they are able to treat with her stomach, this date could be altered as a result. Nothing is a sure thing with Hope and we take each day as it comes. I simply pray that today is more hopeful than yesterday. Yesterday was a terrible day that involved me truly fighting the staff to keep trying with Hope. I was emotionally exhausted by the end and frustrated that this responsibility was on me alone. I wish Shawn was with me all of the time, but understand that he isn't able to be. Hope is our daughter and making decisions about her life should be something we do together. Shawn has been supportive of my decisions and trusts in my ability to fight for Hope. We are a team at heart, but are not always able to fight for Hope together.
Please continue to pray for us. We know that God is able and truly pray that He intervenes in Hope's life and sustains it. We don't know why Hope has to walk this terrible road, or why we were chosen to walk it with her. We trust that God's plans are greater than our own, but struggle to see how we'll move forward if His plan is not to save Hope.
So sorry Amy. We continue to pray and willI do so. You and your family are loved and carried through this. I have no words and do not pretend to have a clue as to what you are enduring. All our love and prayers..
ReplyDeleteOh, Amy. You sound so defeated. I cannot even imagine. I don't pretend to understand. My daughter was in the NICU for heart issues for only 7 days, and never even came close to having to go down the roads your family has had to endure; all in just 6 months. God, I pray right now for your Spirit to pour an abundance of HOPE and love over Shawn & Amy. Lord, please send some type of encouragement their way; soon! Lift them up, speaks words of comfort and of wisdom in how to continue to walk this path with you. God, intervene today on Hope's behalf. I pray against any complications that would hinder the doctor's ability to continue to move forward with her surgery next month. Lord, thank you for entrusting Hope to Shawn & Amy, and for them being such a beautiful example of faith and following you. I know this is not the testimony that either of them could have ever wanted, but thank you for continuing to see them through this. God, she needs a miracle. In Jesus' name, I pray that is healing, and soon!
ReplyDeletepraying for you my friend! sad with you about this news...
ReplyDeleteI keep picturing her sweet little face... Cherish and cover her with love and affection - not because she might be gone - but because you can. Grab the smiles, sing to her - fill your heart with her... And we trust The Lord will give you the strength to love her, and fight - and somehow rest in the middle of this. Praying hard... With tears - and love from Saskatoon...
ReplyDeleteI think of a song by Steve Bell. He speaks of how he has gone down roads he never would have chosen, "...half the time frozen, too numb to feel. I know it was stormy, but I hope it was for me a learning. Blood on the road wasn't mine though -- Someone that I know has walked here before. So here by the water, I'll build an altar to praise Him, out of the stones that I've found here. I'll set them down here, rough as they are, knowing You can make them holy."
ReplyDeleteI pray for a great grace to be poured out on you today.
Karen Richardson
Know we are praying for Hope here in Ontario.
ReplyDeleteNaomi and All Who Pray
Your friend Stephanie Wright is a gifted communicator and her words must really minister to your heart.
ReplyDeleteI ache for you as I read your words.
I too wonder at the experiences Hope is having to endure. But I do know that God put her for however long she walks this road with the absolute "right" parents. Although we don't know what happens with our sweet childrens' souls before they come to live with us, we do know that they are with God. And I can almost picture Hope pointing at you and Shawn and saying to Jesus "Please Abba Father, give me to that Mommy and Daddy!"
God, infuse the Koslowskis with Your wisdom in this walk, your strength in the struggle, your peace in the storm. And like someone else has said, Give them nurturing times with this child they love, give them a sense that Hope feels their love and care, and please God - go before them! In Jesus Name!
Thank you God for getting Amy and Hope through this day. Help none of us to take our living each day for granted. Thank you Lord for giving Amy the strength she needed to fight for Hope today. Though it is impossible to know the purpose you have in bringing their family down this road of struggle and heartache, I pray that you will let them feel your arms around them as you carry them through this time. I pray that You will be glorified through this whole situation somehow. In Jesus' name I pray, Amen.
ReplyDeleteJust like Aaron and Hur held up Moses' arms during battle when he was too weary to hold them up himself, please know that there is an army of us praying for you and holding you all up when you feel so incredibly weary. We continue to stand with you in faith and hope for your sweet girl, your warrior. That her body would be healed and whole. that it would be strong, that her blood vessels would be sustained and restored. that the doctors will have insight and revelation about how to treat her. We continue to speak life and wholeness and strength over her. And you, sweet amazing Amy... you warrior of a mama. I can only imagine how difficult it is to be there without Shawn, and to go through the daily trials without him to lean on in and confer with, to spell each other off and give each other hugs. I am praying that Jesus would draw even nearer to you in every way. that you would experience his nearness in a way you haven't before, and sense his leading and counsel every moment you need it. Praying for some good news. holding you up, annie in toronto
ReplyDeleteNo words. Only prayers. God will either deliver you through this or deliver Hope into the arms of Jesus. Keep up the good fight warrior mama. I hope Shawn can get some time off work to be with the 2 of you. Ok, maybe a few words... :)
ReplyDeleteAmy, I don't even know how you are able to type the words you do some days. Being a mom of 3 little girls myself my heart breaks for you. You are surely the strongest mom I know and your strength is made stronger through your beautiful relationship with God. I pray for you, Shawn, Sadie and Hope daily. Praying, praying, praying...
ReplyDelete