Actual Age: 3 months, 2 days
Adjusted Age: 1 week, 4 days
We never thought we'd being dealing with what we are right now. We never thought we'd hear the words we heard tonight. We assumed that after a few months our family would be home and the girls would be healthy with all of this behind them. We had a care conference with a Pulmonologist and our Neonatologist tonight. We are currently dealing with the heartbreaking decision of doing tracheostomies for both girls. For Eden this is a matter of life or death, we honestly thought she was "out of the woods" but after learning how badly chronic lung disease can be in a baby with IUGR we realize that this is our only option for her. We were 100% caught off guard hearing that Reagan may have to be trached as well. We probably were ignoring what we knew in our hearts- that the steroids are not working and she is still requiring too much 02 to breath on her own. The trach option is something that will have to be for approximately 1-2 years. So right now we go home to decide what to do (even though we already know what we need to do).
Please know that when you ask us if we're OK- the answer is NO. We are having trouble understanding why... why is this happening to our beautiful innocent girls, why is this happening to us. Our faith is wearing thin and we wonder sometimes if God is hearing our prayers. We don't feel like we can deal with this and our hearts are broken. I don't have anymore words to write so I will close here, but please just pray for us. Thank you.
I have followed your blog for awhile being a fellow twin mommy and also IUGR mommy. Nothing I can say will make this easier. Prayer going up for you tonight from Michigan.
ReplyDeleteMichelle G
We are keeping your family in our thoughts and our prayers
ReplyDeleteLifting your family up in continuous prayer
ReplyDeletePrayers going up for you from Chicago.
ReplyDeletePrayers for your little ladies. I cannot imagine how you guys must feel, it is heartbreaking.
ReplyDeleteJust know that there are so many prayers for you and your little ones.
ReplyDeleteA friend led me to your blog as we too have twin girls. Please know that you are in our prayers. I can't imagine how difficult and heart wrenching all of this must be for you. May God hold you tightly in the hollow of his hand and may you feel his strength. Blessings, Rachel Speelman
ReplyDeleteLifting you up.
ReplyDeleteA friend shared your story with me just this morning and I want you to know that we're praying for you and your precious girls!! God is bigger than this!! I can't imagine what you're going through, but as a mom to a special needs child, I do understand all the questioning you're doing right now - wondering WHY God has chosen this path for your family. My prayer is that He will hold you and comfort you as you make these difficult decisions - and that the girls will miraculously come out of this experience as incredible examples of God's goodness!! I'll be praying for guidance and protection for everyone involved!
ReplyDeletePraying with you and for you today and always. May your girls have a healing hand laid on them today and give the doctors wisdom to do the right thing. Bless you Scott and Amanda
ReplyDeletePraying for a sense of indescribable peace to come over you today as you wrestle with this unexpected development. Trust the doctors God has brought to your girls - you are in a great place. It's tough to feel out of control and to watch your kids suffer. I found the only way to bear it was to completely let go and give it to God. Praying you are able to do the same and endure the pain you are feeling yourselves. It's a good pain. A healthy pain. It's love and hope and selflessness. Embrace it and share it with the Lord. HE CAN HANDLE IT!!!
ReplyDeleteI was led to your blog through a friend and we too had a little one in NICU. We are praying for you and your family. God's people are pleading for wee little Eden and Reagan!
ReplyDeleteMay the Lord himself give you peace at all times and in every way. 2 Thess.3:16
Amanda - my wife, Laura, has been sharing the updates of your little ones for a while now. She has been sharing stories of a lot of families with kids in the hospital,etc., but Reagan and Eden have really touched me. I will continue to hold your family in my prayers and ask my students (I teach high school) to do the same. I know that when I share your story with them, they will be moved. While your suffering is immense, and the road ahead looks treacherous, and you may feel too exhausted and hopeless at times to remember God, know, too that God will never give up on you and will never be apart from you. Our God is a God of the suffering. God is in your suffering and God suffers along with you. I wish you peace and will continue to follow your story and pray for peace for you and your sweet little ones.
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