Things are getting easier to deal with, slowly but surely. Katie's surgery went really well on Wednesday. They even put her on her back on Thursday to do a CT scan and she had minimal pain. We still can't hold her and I can't feed her yet but she's getting breast milk through a feeding tube. I am so grateful for the wisdom God has given those in the medical field. Her head did swell 2 cm but hasn't gone up since, this is normal when closing the spinal wound she was born with. They will do surgery on Monday to put her shunt in. That should drain her fluid off her brain and cause the swelling to dissipate.
The more I heal physically the harder is it not to hold her. I am getting full night's sleep which is different than the normal newborn stage in a family, but I would take those sleepless nights just to hold her. I'm getting to know her personality. They tell me she's "fiesty" I think she's frustrated just wanting to be held and determined to prove everyone wrong. Our doctor will meet with us Monday and several days after that. Hopefully this next week Katie Joy can come home. We already are trying to prepare our hearts to hear all the instructions of what it will be to take care of her. I am finding a lot of comfort meeting the other NICU moms. I am hoping to find some other moms who have children with spina bifida.
We are grateful beyond grateful, we are being blessed by people all over the place. We have every meal practically provided for us. There is constant family support, the nurses and doctors are really sensitive and sympathetic. We have diapers and formula being paid for, she is covered completely as far as we know for bills so we don't have debt piling at all. We can focus on loving our girls and learning how to bond as a family 100%. It's crazy how many people have said to us that God created us to be her parents and they can't imagine better parents for Katie Joy. I never imagined having a situation like this but Jeff is stepping up in a way that I never would think he would want to. He has been the biggest strength next to Jesus. If we didn't have the hope of glory Christ in us we would be lost. This would be unthinkable without God. Many of my family members who aren't church going or bible believing Christians are seeing us "deal with it really well." but can tell it isn't just our strength there is more to this than flesh and blood here.
I've said it before and I'll say it again, I don't care that Katie Joy will be different she is alive and I get to be her momma. She is our sunshine and God will use her to bring people to Himself. God is good in every situation, no matter how high or low it feels He is still the great I AM!
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