Not too much changed in her care plans this morning. Her head circumference did go up the past 2 nights. This indicates an increase in the amount of CSF in the ventricles in her brain... if there’s too much fluid in there, she’ll need the shunt surgery (the one her cutie friend Sarah Catherine had, that went so well for her, thank you God!!) to help it drain. Right now Annelise is not big enough for the surgery, but she is gaining weight every day too! She’s 3.9lbs as of last night💪
We’re still praying that she won’t need the shunt surgery.
I’m still learning how to stay in the balance of telling God what my heart wants, and trusting that nothing is impossible to Him... and at the same time, recognizing that His ways aren’t my ways, and I could never come close to knowing what He knows, so it’s definitely possible that the Lord has plans for Annelise’s medical story... my brain tries to keep me on one side or the other... but if I only expect God to answer my every prayer the way I want it to go... that leaves no room for His wisdom in our story (and with perspective... His wisdom is what I want to choose every time).... if I just let God do what He will with Annelise and don’t talk to Him about it at all... then I miss out on the perspective and relationship that I get after wrestling with my feelings and faith. I miss out on praying for specific things like who will water our plants on the days that our friends don’t come over to mow the lawn? Answer: My neighbor initiated an offer to help with the garden! Another prayer was how to get my niece and cousins in to the NICU to meet Annelise... the answer to that was giving us nurses who let the little cousins in on her shift, and a policy change to the visiting requirements allowed our niece Mara in to meet Annelise the following week!
The big one is my prayer for Annelise to be healed so she could avoid the hospitalization and the need for so many lifesaving interventions. The answer to that overall was a no, and I don’t plan to ever really understand why this is part of her life story. I don’t know if there’s one “reason” in my mind that could ever equal it being okay or necessary for Annelise to go through this. I can’t tie up in a neat bow the “why”, or think of any way that would make it easier to see her daily struggles. But in the midst of living with the answer to the prayer that’s not what I requested... I’ve never felt more loved, or seen, or in the presence of God than I have in this past month, and since we found out about her diagnosis really. I see Him work daily bringing comfort, little and big victories over medical complications, and while I don’t want this to be our reality, NICU life and breathing troubles... if we didn’t have these struggles, we wouldn’t have access to the joy that comes from being held in the middle of the struggle, and from the victories we experience!
So it’s important to pray and ask the Lord to fix up the cerebrospinal fluid issue so that it drains appropriately without a shunt, and to grow her lungs and airway so that Annelise can take easy breaths, and strengthen her airway and muscle tone. I know and believe these impossible issues to me are no biggie for how Mighty my God is. I know that if he chooses a different plan for her story, that He will be present in every page, and He knows all of the chapters, and will be there too!
This is the kind of stuff that floats around in my head throughout the day. I’d love to be able to have a coffee date and talk it over with whoever continued to read this monstrosity of a post this far! 🤪 But for now I just dump my thoughts on here... it’s helpful for me, and I’m sure it will be interesting to look back on whe our life eventually leaves the NICU! The other plans for today include holding Annelise and resting so she can continue to grow!
Thank you, as always, for continuing to keep Annelise in your prayers❤️
Evening Update:
Annelise’s first month birthday was full of rest for her, and some holding time with me... something that is becoming much more consistent and I love the cuddles!
The day was not too eventful. The urology specialists came to say that Annelise’s kidney (she has one big “horseshoe” kidney, where the two kidneys are connected in the shape of ... a horseshoe!) is slightly inflamed... so they will be putting her on antibiotics to try and keep away any UTI’s, as well as follow up with a kidney x-ray sometime soon. I don’t know too much info about that yet. I’m sure it will be another learning curve.
She didn’t gain any weight today👎 but her head circumference went up by only 0.1cm👍
The past hour and a half has been eventful... because try as we might, the normal tricks once again just weren’t enough to keep her 02 sats up. The nurse practitioner was finally called in, and she made an adjustment to the oxygen she’s receiving. After some repositioning and waiting, her numbers came back up. She’s requiring a lot more oxygen than any other day this week though. Praying that her breath will come easy soon, and thanking God for the nurses who work so hard to keep her comfy, and also check in on me to see how I’m doing when the night gets stressful. ❤️
On a fun note... I can’t decide which animal to have Annelise take pictures with each month... so we’ll just go with both for now 🥰
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