The Wait

Everyday is a different, some days are better than others. We look at the bright side as a family! Nevaeh is waiting for a donor, and that is a hard mind set to put ourselves in. Knowing that she can’t live with her own heart hurts so much. Seeing her daily struggles is hard to see as her mother and father. We have had parents tell us that “she looks great!”, she does look like her beautiful self just hard to see her like this and know what she has been through just to stay alive. Today is struggle is high heart rate, fever, and bloody stool. The reason for these things is still unknown, we are still running labs and cultures to find out. The LVAD (left ventricle assist device) is what is pumping the left side of her heart because it is to weak to pump it self. There are two tubes coming out of her chest from that are inserted into her lower left side of her heart that pumps the blood into where a motor sits, and back into the top left side of her heart to pump it out to her body. Everyday that she has the LVAD she is at risk of forming clots, because blood tends to stick to the tubing, so she has to be on blood thinners to help with the clotting. Also the LVAD specialist are talking about cleaning out the clot that has formed over night. It is a steril procedure, so no one is allowed in her room at that time. The procedure itself takes less than a minute, they have to be quick because in that time her heart is pumping by itself. Her cardiologist has told us that the procedure itself with risk is less than 1%. She has had the procedure done 4 times. We have been ready sense she got here to take our baby home. That day cannot come soon enough.

Comments

  • Marti Miller

    We love you guys and pray that God will continue to give you the strength to do what you need to do each day. Psalms 34:17-18 says “the righteous cry and God hears them, and that HE is near to the broken-hearted”. (My paraphrase) I continue to cry out in behalf of Neveah and for you as parents. I understand that life as you knew it has stopped and it’s a lonely feeling! I am praying that you’ll be encouraged, that the joy of the Lord will be your strength! God is with you - He is for you and He is our deliverer! Again prayers sweet people...love you guys and I will continue to PRAY!??????????

  • RLP

    I can't begin to imagine your daily struggles with sitting there and all you can do is watch and wait. Just know that my heart crys out for you to God each and every day until she can come home and start anew.

  • Teresa

    I found out about Nevaeh through her Aunt Misti. Every day I say prayers that God will cradle her and her family until a heart is found. I had a niece that was born with a deformed heart and remember the countless hours of wondering if she would be ok. God is a miracle worker...my niece is 30 years old now with a beautiful child of her own. Know you are in my prayers and the prayers of my church. She is beautiful!

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