Day 21

They had to put Hailey back on bi-pap last night. She looked really comfortable all day but her CO2 was high so they had to put her back on. She keeps having fevers and her heart rate is really high, over 200 at the moment. 

Her labs all look okay but no one can figure out why she is having such high fevers and high heart rate. 

It is hard not to feel stressed and kind of discouraged because it seems like we have gone backwards this week. We could really use some extra prayers. 

At least we are all together for now. We have so much to be grateful for as we have seen many miracles this year. The fact that Hailey is still with us is a miracle, especially in light of what we have gone through. 

Sorry if I wax a little emotional/nostalgic here but just some thoughts in light of this Thanksgiving season:

We are grateful for the many tender mercies Heavenly Father has blessed us with.

It is painful and difficult to watch Hailey suffer so much and to feel so helpless. I do not understand all the reasons but I know Heavenly Father intends to have us learn and grow. It is a constant battle to trust, to have faith and keep going. I cannot pretend not to struggle, because I do, but I do know that Heavenly Father loves us and has blessed us so much! I'm so grateful to be her mom and to have the privilege of associating with her. She is sweet and strong and amazing and we love her dearly. 

I'm also very grateful for my sweet Abby and Katelyn. They have endured long separations and parents who are often stressed and exhausted. They have been patient and ever-helpful with Hailey. 

I'm also grateful for my sweet Ben who carries a tremendous amount of the load and still goes on, carrying us through it all.