Friday, March 4, 2016

Back to the Waiting Game

Over the last few days Avelyn has maintained and that's been a feat in and of itself. She will not be able to improve until she can have her coarctation of the aorta repair and an interventional cardiac cath. The CoA repair should be next week, but we have yet to secure a date. The cath will likely be the week after or the next.
She has held her own with the weaning of her opiates and benzodiazepines, these are the medications meant to sedate her. Yesterday she seemed to have rested comfortably and appeared more alert when she was awake. The risperadol is really keeping her delirium in check. Her eyes still wander a bit but she doesn't have the dead pan gaze she did before and her hyperstartle reflex and gagging seem to have improved. It's nice to see that spunky spirit in behind those pretty blues again. 
They have also been weaning her ventilator settings. She has been tolerating it well considering how long she has been ventilated and all she is currently dealing with. Yesterday her left lung was completely collapsed but today it looked better. Not great but better. We're hoping for even more improvement tomorrow. I am not sure if they plan to extubate before her next surgery. I guess it just depends on the date and how she does over the weekend.  
Yesterday I fell quickly with flu-like symptoms. I didn't feel comfortable staying in the hospital and risking spreading it to Avelyn or other kiddo's. It's been so hard to be away, probably harder than anything I have done so far for my sweet girl. I am feeling better today and haven't had a fever since the wee hours of the morning. I could not handle the thought or action of going a day with laying eyes on her. I know I shouldn't and I have been fighting myself all day. Finally I gave in and masked up. I gazed upon her from outside her room. She truly is the wonderful. She is so strong. So courageous. So beautiful. Oh how I miss her.
In the last month and a half I have only held her once and Sean hasn't held her at all. It's not only hard on us, it's hard on her. She loved being snuggled, rocked, and bounced. At a month old she would call out just to be rocked. I miss that so much. I miss her. I can't wait to have her back. To be able to scoop up and comfort my baby is my life dream. I can't describe the agony of seeing her cry and not being able to soothe her without drugs. I know I should be grateful with our situation. She's still here and she can and will recover. That's what matters. That's all that truly matters, but sometimes it's easy to lose sight of that. Babies aren't meant to go months without being in their parents arms. Babies aren't meant to not remember the feeling of a full belly. Babies aren't meant to experience pain or withdrawals. 
Ugh... 
It's hard, so very hard. We can't wait to have her home and begin teaching her what being a baby is all about. It'll come, I know that. We just need to have more patience and to keep fighting. We'll get there. And as an FYI, you'll likely continue to read sappy posts until we do. 
This momma is tired of seeing her baby in pain and being completely helpless.

5 comments:

  1. I love reading your posts. They are informative and touching at the same time. I can feel the love and longing as only a parent would understand. It also provides specific things to pray for..,,thanks for sharing y'all's struggles, your victories and your hopes. Sending love, hugs and prayers for all.

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  2. My heart weeps for your agony and longing for your daughter. I can't fathom the depth of difficulty that you are experiencing through this journey. I can only assure you that God loves you, and He loves that precious little girl of yours, and He understands. I can't understand the whys, or when's. I can only say trust Him always, even when you don't think you can anymore. I will be praying for you, your husband, and sweet Avie.

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  3. My heart weeps for your agony and longing for your daughter. I can't fathom the depth of difficulty that you are experiencing through this journey. I can only assure you that God loves you, and He loves that precious little girl of yours, and He understands. I can't understand the whys, or when's. I can only say trust Him always, even when you don't think you can anymore. I will be praying for you, your husband, and sweet Avie.

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  4. We are praying for you sweet girl. Keep fighting a good fight. Mom and Dad God has everything under control. God has and always will be right by her side. Lots of love!!!

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  5. She is amazing❤️ I look at her and I'm filled with hopes and dreams of better days. Of birthdays and holidays to come. But we have to be patient (never a virtue of either you or me).She loves you and that is so evident as you see her look at your face as you soothe her. She settles for you & Sean so quickly now. Watching those tender moments almost makes me feel guilty. But I've never been more proud of you and your Prince. You gave me Avie and I will treasure this little wonder all of my days ❤️🙏

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