Emotional Roller Coaster

If you are reading this blog your prayers are always welcome with our family. We knew from the beginning when we found out that about Nevaeh’s condition that this wasn’t going to be easy by any means. We want things to get easier for her as any parent would for there child. Making the hard decision to get a heart transplant was not and still is not an easy process. Nevaeh has surpassed so many odds that have been thrown her way! When she first came to the hospital her chances of survival were very slim to none. After being on the VAD and seeing her thrive, we had hope and faith that she would be able to conquer anything! Not that we didn’t before but seeing it first hand is so scary. Even though she did have dialated cardiomyopathy, she now has a new hurdle, and that is her heart transplant itself. She is able to live and thrive with her new donor heart she will always have to be on medication for the rest of her life, and may even have to get another transplant one day. We don’t know how long that could be, but we will be here every step of the way for her. There are so many emotions that are involved because we want our daughter to have a chance at having an opportunity to live life, but it is going to be a rough road ahead. Above all things she will still look at me and smile every chance she gets, even with her being on the vent. She plays with her toys, and tries to sit up!Nevaeh is still having a hard time coming off of the vent, I have cried so hard because I know what the next step would be if she can’t get off of the vent. Which would be a tracheotomy (hole in her throat to help her breath). It was such a hard blow to hear that. We are going in for a throat study on Monday and relooking at her diaphragms to see if there is anything at all that we can do before going that route. The last floro (video x ray) she had the radiologist read that both of her diaphragms are paralyzed. We will also have another floro on Monday to give us a definitive answer. I am praying so hard our baby doesn’t have to go through another procedure. These are hard decisions to make as her parents, but we always want her to know that we did everything that we could so that she can have a wonderful life, no matter where God takes her, she will always be are miracle. 

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