Friday, January 12, 2018

Trust & Mother's Intuition


This week has shown me so much goodness and joy alongside so many feelings I can't quite find the words for.

It was a week of great concern, heightened mother's intuition, and careful scrutiny, but it was also a sort of hovering cloud of anxiety coupled with great confidence that we, Rosalie's parents, knew exactly what was happening and what we needed to do (praise Jesus!). It's impossible to describe the kind of sustained, days-long adrenaline I felt while being totally at peace unless you've somehow experienced it, too. I imagine this circumstance full of confidence and peace amidst sincere worry for a child's well-being is only found through trusting in the Lord's goodness and presence in our lives.

Three & a half months ago I was very concerned that Rosalie, our daughter with hydrocephalus, could have a shunt infection or malfunction and we would have trouble detecting it. Now that we have lived through a few shunt-related scenarios I can see that despite some of the symptoms being subtle they are glaringly obvious to us as her parents.

When well-meaning, supportive friends told me to simply enjoy the long stretches of sleep Rosalie had 2 nights in a row I just knew I couldn't let my guard down. When Rosalie unexpectedly spat up in her car seat one day we could have written it off as normal baby behavior - but the Lord nudged my intuition to take note. When I studied her face during her play time and noticed some familiar bone plate ridges becoming less pronounced and her eyebrows looking more filled out my internal alarm system went off. It was so subtle no one but my husband and I could see it - and most of the signs can be misconstrued as "normal" baby behavior so our friends would be none the wiser...but we know her better than anyone.

This week we had a healthy reminder that WE are our daughter's most reliable day-to-day experts and biggest advocates. Yes, she is receiving excellent medical care and the problem we discovered with her shunt would have been detected at her follow-up with neurosurgery next week, but we caught it at home as soon as we possibly could, which ensured one week less of pain and potential complications for our child.

Long story short, my husband and I began to notice a slew of subtle symptoms that suggested her intracranial pressure was increasing (which is what happens with hydrocephalus when fluid begins building back up/not draining as efficiently as it should).

On Tuesday afternoon her increase in head circumference was slight, but enough for Michael and me to agree we could both see it. I called first thing Wednesday morning to request they look at her MRI scan from Monday; within 5 minutes I got a call back saying they reviewed her scan and bumped up our appointment with her neurosurgeon to the next day instead of having to wait another week for follow-up.

Thankfully this 2nd shunt Rosalie was given is programmable, which means there are several valve settings that can be changed without surgery via use of a specific, industrial strength magnet. Her neurosurgeon changed her shunt to a new valve setting and we'll be following up in about a week and a half, but Rosalie seemed to feel some relief a mere half hour after the adjustment - and in less than 9 hours we could visibly see some of the swelling from the fluid build-up going back down. Hopefully in a few days she'll be totally back to her normal self, but she is already well on her way!

Feeling happy, happy, happy less than 24 hours after her shunt reprogramming!

I'm so thankful that we have access to wonderful medical facilities and care for our little hydrocephalus warrior - and I'm grateful that as her parents we have apparently been given great knowledge and tools to help our daughter stay healthy and thriving. The Lord is slowly, continually revealing to me on this new journey as a special needs parent that He truly does equip the called, rather than only calling the equipped. 

If you have children it doesn't take a special needs child to teach you how to trust both the Lord and your gut, but in our case it certainly seems to be magnifying and enhancing it. As parents we cannot control what kinds of medical illnesses or conditions our children are born with or exposed to, but we can educate ourselves, prepare for what we are able, and simply trust that God will carry us through the rest. Again, He does not call the equipped - but equips the called. 

I hope and pray y'all can also find peace in trusting that the Lord will provide all the necessary tools to handle whatever it is He blesses and challenges you with. 

"Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go."
Joshua 1:9