Life is so precious. Scott and I have talked multiple times this week about life and death. Our beautiful, perfect little girl is right on the edge. It's terrifying to just wait. Every time our cell phones ring we almost have heart attacks. Eden's condition has worsened, we knew this was inevitable but we were just waiting. She is not tolerating touch, she de-satts anytime someone tries to change her diaper or administer meds. She needs more O2 and we are now keeping her in a mostly sedated state. So here we are just waiting- waiting for her to become more stable, waiting for Texas to give us an answer, waiting.... God is in control of this situation and we know that he will keep her safe and strong, we just have to wait for him to reveal 'the ultimate plan'.
Thank you so much for praying for us this week. We need prayers so much. Just a note to all the parents who are reading this- Thank God that your children are here with you, hold them tight (even if they're teenagers and don't want you too), tell them you love them- their life is so precious and at any time they may not be here with you.
Praying so hard for little Eden and your family. I never take one moment of parenthood for granted!
ReplyDeleteMy heart is breaking for you both. I have twins and was very lucky to have them at 38wks. I have been following your story since your precious little ones were born and it saddens me to see that Eden is not doing good. I wish there was something i could do for her. I am praying that she gets stable and gets a donor soon. You and your babies are always in my thoughts & prayers.
ReplyDeleteI am praying for your family and little Eden. I am also a MOM member and have been following your blog for a while. I never take time with our daughters for granted...we almost lost one of our twins at 3 1/2 months due to cancer. Life is precious and things can change in an instant. I hope Texas will have some answers and a plan for you soon.
ReplyDeleteWell said Amanda. Life is precious and I know all too well that things can change in the blink of an eye.
ReplyDeleteI will continue to pray for Eden as I always have. I hope that you hear from Texas soon with good news for your beautiful girl.
Sending a big hug.
Steph
Amanda please know if you need anything Im here for you and your beautiful girls! There is so much love and passion in every word you write. Your girls have the strongest parents and are so lucky to have you and Scott's love. We are praying for Eden to fully grow and hopefully come home into your arms soon. Much love and prayers.
ReplyDeleteCassie
Scott and Amanda, Our hearts break for you, I can't imagine what you are going through. I do know that it is hard to see your kids hurt but a life and death situation is so different. It is something that no parent should have to feel and no one can understand unless they have been there. We will keep praying for Eden and you two. I wish we could do more, but like you said Eden is is God's hands and we surly don't know his ultimate plan. Love, Doug and Brenda
ReplyDeleteAmanda,
ReplyDeleteMy heart aches for you and your husband as well as the rest of your family. There are no words I can say that will make things right but please know that our small group is praying urgently for your family. May God hear his people's cries.
As a side note, I feel the need to help somehow and was wondering if you could email me at derjen@hotmail.com.
Praying so hard for your little girl! Specifically praying for "approval" from the transplant team.
ReplyDeleteWe live in Houston and frequent Texas Children's with our daughter due to some of her heath issues. TCH is an amazing facility. If there is anything that someone local can do to help with anything (now and or when you arrive in town) please don't hesitate to ask. We are just a few minutes from the med center and we are at TCH twice a week.
Praying so hard!
My heart is breaking for you and your family. I am so sad to hear that Eden isn't doing well. We are praying for you everyday and hope that you get help for Eden soon.
ReplyDeleteHeather B
Hi Amanda, I found your blog when I googled for "measuring 8 oz at 23 weeks". I am 24 weeks pregnant with identical twin boys and my baby A is 8oz and baby B is 15oz as of last week. Since we are getting close to the age of viability I was looking online for others that have been in a similar situation. Thanks for sharing your experience so openly. Your story gives us hope. I'm so sorry it's been a long road of challenges. I pray for you and your beautiful baby girls, especially for Eden.
ReplyDeleteKaren
You two are the strongest couple I've ever met. I hope and pray that the four of you continue to become stronger. If there is anything, ANYTHING I can do please don't be afraid to let me know.
ReplyDeleteWith lots of love,
Karissa
Praying for all 4 of you, and thinking of you so often.
ReplyDeleteColleen (Molden) Aaberg