3/7/2020 - home sweet home!

Home sweet hoooooome!  Thank you, Jesus! Now to wash all the things, and begin to decompress from the intensity of the past few days!  I'm super jumpy and my adrenaline is right there ready for fight/flight.... I need to take some tips from relaxing and contentment from this powerhouse of a 10 pounder baby girl!  She has been all smiles🥰

We're outta here!

3/6/2020- Maybe tomorrow

Well, we aren't going home today after all.  We are cleared to leave by neurosurgery... but when we were in the ER on Wednesday night, they did a blood test that was sent out and came back positive for infection! BUT, since Annelise doesn't have a fever or any other symptoms, they think the test was ruined by a contaminant, so they just have to get a new blood sample to confirm that she's all clear!  No big deal.... unless you have Annelise's microscopic veins, that is 😫.  It was a long morning.  But the attending doctor finally got what they needed.  Now we wait for results to come back to confirm that Annelise has no infections, then we can go home!
I got a little smile today from this sweet baby!  She looks like she is feeling soooo much better ❤  Not quite back to her old self yet, but I imagine that could be because she never knows when someone new is going to stick her with a big 'ol needle!  We're just hanging out and waiting to get outta here!  The flowers are blooming at home so we need to go see them🏡🌺🌼❤
So close!

3/5/2020 - Shunt Revision Day

Update:
Annelise is back in her PICU room, and resting. 🥳 Her neurosurgeon said the surgery went well.  He had some reason for not wanting to shave her whole head...which actually came as a welcome surprise, since I began to regret the decision to shave all her hair the more I considered it!  So she still has most of her fuzzy hair🥰
The good news is that it was a successful fix.  The potentially not so great news is that what the dr. found was that choroid plexus (where CSF is made....apparently....I'm just learning this too) was blocking the shunt and not letting it do its job to drain the ventricles. The surgeon said that this problem can be recurring, with high probability of it happening again😞
He moved the shunt away from the choroid plexus a tiny bit, so hopefully that will help to prevent it from getting in the way again.
Here's an article that talks about our problem in case you are interested.
Thank you Jesus for bringing our powerful little princess through the surgery and back to her room with her eyes wide open!  We made sure this time that she had pain meds lined up already, so we have stayed ahead of her pain, and hope that we can now ALL get some rest!
We appreciate your prayers with all of our hearts, and knowing you are lifting Annelise in prayer gives us so much joy to see her so well loved.
https://www.hydroassoc.org/from-patient-to-progress-new-insights-into-preventing-shunt-blockages/

12 noon:

Wow!  Things are moving so fast!  They just took her back for surgery now!  She was an "add on" and they found a time to add her on early!  We signed all the releases once again stating that we know the risks, have been advised of all the possible things that can go wrong.... but again, not doing anything would be far worse, so it's an easy decision in that regard.  

It does not come naturally to live our faith with an open hand, offering up the things and people that God has given to us, recognizing that they are not ours, but His to give and take.

It's a choice to recognize that our lives are the Lords and not ours.  It seems to take away all of my power, and it can be terrifying to recognize that I am so out of control.  But to think about who does have the control, that's where the peace that surpasses understanding comes to life.  The one who made me and Kevin.  The one who made every part of Annelise, and who knows and loves every inch of her, He is the one in control, and He loves us more than we can even imagine.  More than we even have the capacity to love.  We trust Him with our future and with our daughter, because she is His baby girl first.  

Her stuffed animal friends are waiting to see her in an hour or two!

P.S. Bald baby will make her return.  We asked for her head to be shaved again so we can start over with her hair the same length so it can grow and grow with no more surgeries on her head!!

3/5/2020 - Another shunt issue

The neurosurgeon attempted to tap Annelise's shunt... but nothing came out... meaning that's where the problem is.  He has other surgeries to perform on other people's brains today, but will take Annelise back at the end of his day to repair the shunt.  It is a surgery with risks, and he's repairing something that goes into her brain... but best case scenario is that we go home tomorrow!
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3/4/2020 - headed to the ER to check on the shunt

Hi friends and family,
My fontanelle is bulging, I've been sleeping all day, and I just barfed twice... so my parents are bringing me in to the ER to check on my new shunt.  We hope it's still working so I don't need any more brain surgeries. My hair is just starting to grow back! Although that's the last thing my mom should be thinking about right now. 
Please pray that we get in and out of the ER without catching any cooties. God has a plan for my life and He has never left us yet! Mom and Dad are baskets of nerves, and could use some prayer for endurance and faith.  Luckily, Faith is my middle name! Literally.  Love you all! Thank you for your prayers!
Love,
Annelise Faith Buchanan

 I felt great earlier today!  Mommy and I had an adventure!  She will post about it later!

3/2/2020 - non emergent interventions

We went to the Spina Bifida Clinic today to talk about casting Annelise's clubbed feet.  The idea is that over 6 weeks, she'll get a new cast each week, and they will slowly turn her feet to a more outward direction.  There's a possible surgery at the end of that to release the tight Achilles tendon.... and it's possible that the casting might not work, in which case there is a surgical alternative.... it if weekly casting is the least invasive, and it seems pretty invasive...then we'd prefer casting over a surgery.
All this is to set her up for success, in case she shows us that she is able to be mobile someday!  It is entirely unknown what she will be capable of.  The challenges are low muscle tone, a dislocated hip that won't go back in its place, and the spina bifida of course, causing who knows what nerves to be connected or not.  My thoughts on casting is the sooner we start, the sooner we can be done!
It's surreal to be planning interventions "just" to increase her quality of life... and not straight up lifesaving surgeries.  In a way it's a little bit more difficult to say yes to... because why voluntarily put her through another surgery?
We don't know how long the Lord has planned for her life.  But we aren't planning for her to leave, we are planning for her to live!  God is in control of the details.  We fall more in love with her cuteness every day, and we've had 38 weeks of days being better just because she is here to share them with us 💗💗💗