9/25

I still have a bad attitude and I just don't think I have the energy to fix it.  Can I just say that my husband is an amazing human! He's cared for my fragile mental state all day, and is staying with Annelise tonight at the hospital, even though we know he'll get far less sleep than I would because I can sleep anywhere.  I'm just not happy with anyone right now, even my own self.  Except for Kevin and Annelise, they are the bee's knees.  I am sure that this too shall pass.  I'm comforted by my own mama who remembered my childhood church pastor, Max Hickerson, talking about the phrase in the King James Bible - "and it came to pass".  He said it shows us that things can change because it doesn't say "and it came to stay". Transitions are not easy but they are not permanent either.
This one is a doozy!
Annelise barfed again today, and right after her seizure meds, so she had to take them again!
We still don't know why the bump of what the neurosurgeon thinks is just cerebrospinal fluid keeps showing up and going away on the side of her head.  The good news is that her shunt looks like it's all intact...the bad news is that she needs the MRI so he can see what's in her head. 
Prayer requests for my attitude to reflect the trust I have in Jesus to lead us through this transition... For Annelise to stay still and calm during the MRI, and for wisdom for the neurosurgeon to know what's going on in our baby's brain.
They have a tentative discharge date of next Tuesday for us!
This is not congruent to the talk they gave when we got here about how they won't let us leave without us feeling ready to go home and take care of Annelise on our own.
We will not have nursing care set up by that time.  Our girl really is doing so well, but she does have a lot going on! I might have to just embrace that the first part of coming home is going to be terrifying.  I'm trying to catch up on sleep now so I'll be ready.
In the middle of the chaos.... Let's take a moment to celebrate this baby of ours.  What a strong girl she is, such a sweet soul.  We're so in love with her, and I believe God gave her to us on purpose.  She's the best thing to happen to us, and the reason for us running to God so often, and she's the reason we have a deeper relationship with the Lord and each other while walking through this season together. She has been carried by prayers and the love continues to pour out for this baby blessing! God has been so clearly at work in her life, and in the lives of her baby friends from the NICU too! He is bigger than all of the health issues she has going on. Even finding nursing care.  He is more powerful than the fullest schedule, and will provide what we need.  As I write, I'm reminded that His ways aren't my ways, and He doesn't promise we won't struggle in this life, but He always keeps His promises, and He says He will not leave us.  I feel like He's right next to me, very available whenever the moment arrives where I stop trying to control it all myself and flipping out about my disappointments.
He's also got very wise people here on Earth telling me to sleeeeeep!  So that's where I'm going!  Love to you all!