Tough Like Tessa

16 April

This journey with Tessa is changing me.  
Some days I feel like it's definitely for the better: my faith in God is stronger, my prayers are more frequent, my compassion and empathy for others has deepened, and my entire outlook on life has changed.  

But there are also days when I feel like it's for the worst: I find myself holding my breath each day, praying there are no new complications when I get her out of her bed; I let fear get the best of me; I get lonely and frustrated because I no longer have the freedom I used to have. 
This journey is hard, and there are days when I struggle with our new normal-navigating my way through the constant uncertainty, the roller coaster of emotions, and trying my best to give all four kids the attention they need from me. 
Right now, we are all on a high as Tessa is playing and laughing with us.  She was so miserable for so long that we all just cannot get enough of her smiles. I'm trying my hardest to just simply enjoy these moments and be thankful for them- but at the same time I'm constantly checking her over and overanalyzing everything because I'm subconsciously waiting for the other shoe to drop. But thankfully God knows her future, and knows all about each and every complication that she faces. And He promises to pull us through it. 





Hospital life with a poor little girl who just did not feel good. And has a strong disliking toward medical personnel, and felt deeply betrayed when I became one of them to take her back to her procedures.   



Our happy girl slowly started to return after receiving some proper nutrition (the formula she is on is heavily broken down, since her stomach wasn't able to digest her food). With this formula, the lining of her stomach was able to repair itself, and I'm sure it made her feel much better!  Her hemoglobin dropped while we were at the hospital, so she received a transfusion as well.  



Since she has been home, she has picked up right where she left off over a month ago when she lost all desire to play or move. She has been playing, using her gait trainer, and scooting around on her belly.  She loves playing with the big kids, and they love playing with her. She was drinking all of her required formula through her cup (it comes in a vanilla flavor for oral feeding and she loves it) and gaining weight, so we were able to remove the ng tube after only one week.  



So tonight I will thank God for the happy and healthy day we had.  And I will trust Him for whatever comes our way tomorrow. 
"And we know that all things work together for good to those who love God, to those who are called according to His purpose."  
Romans 8:28

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9 comments

  1. So heartwarming to see our sweet happy girl💚 "When the cares of my heart are many, Your consolations cheer my soul. Ps 94:19"

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  2. So thankful for a God that hears our every prayer and the sorrows which we can't fully express. You are inspiring and so is that sweet girl of ours <3 Love you!

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  3. Continuing to pray for you all and precious Tough Tessa, and so happy you can enjoy her being back to her “normal”.

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    1. Thanks Becky! Your prayers are so appreciated!

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  4. Thank you for sharing your heart with us XO
    Tessa's sunshine smile at the end your post is so beautiful!! Her smile is so contagious!
    Hugs to you and the fam as you journey these roads together.

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    1. Thanks Alison! 😘 We are all enjoying that big old sunshine smile!

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