Updated: Dec 3, 2021
Little did I know a year ago, her life was about to change forever. Little did I know our entire family was about to endure the amount of stress we faced. On January 24th, 2021....our lives changed forever. But most of all, HER life changed, and it was a huge punch in the gut for everyone...but none of us knew what she was getting ready to teach us all.
I've highlighted certain portions of this blog to share how you can see a pattern of motherly intuition & determination.
On January 26th, I shared this on my social media:
"Motherly instincts are a real thing.
Mommas, this is your reminder to follow your gut & do what that gut tells you to do. We are currently on a journey that my motherly instincts told me something wasn’t right for months, but I continue to pursue and get the answers we need.
Also grateful to have finally found a doctor that is listening to us. When the timing is right, we shall share our story. Until then, I urge you to know that you know your children best and if you feel an instinct, follow it." You see....this was 2 days after something happened to Willow...aka "Willow the Warrior" and I had to process for two days before even sharing the above. I was scared out of my mind and honestly desperate to do anything I possibly could for my baby girl.
Post from - January 29, 2021
"On Sunday, Willow had an episode that was very scary, something we’d never experienced before. Because my amazing parents took amazing care of her, (she was with them at the time), and after my mother’s incredible note taking, we were able to document the entire episode for the doctors. On Monday we were seen by the pediatrician who has since referred us to specialists. However while at the doctors, Willow had a second episode and the doctor was able to see it herself. We were told to go to the ER if it were to happen again, so here we were tonight at the ER, as another episode occurred. Tomorrow morning, Willow will be receiving an MRI. Please pray for her as she goes through these tests and pray we get answers and are directed on how to best help her. It’s looking like seizures at this time, but as a mother I am trying not to panic and certainly not google too much stuff. Willow is in great spirits and loves the care she is receiving from the wonderful doctors who call & check on her daily & joke around with her." At this time....we knew NOTHING....other than she was having "episodes" that were unexplainable.
January 29, 2021 "Plot twist...because that’s how we roll.
Current update on Willow May Lucille.
The morning started out with us headed to get her MRI done. However a different physician saw her today and decided he did not want an MRI. After a little bit of me arguing with him and him explaining why he felt we needed to go a different route, I left feeling less defeated. We are now seeing Pediatric Cardiology at Hershey. Willow will wear a heart monitor for 30 days. Just waiting to get it fitted. I still feel uneasy and would like neurology involved and, they still will be, but we will have better access at Hershey for this now.
Until we can determine what actually may be going on, her episodes & symptoms line up with what is called SVT (Supraventricular tachycardia).
Our plan with her doctors is to treat her as if she does have SVT and see what the monitor may tell us along with upcoming visits with the specialists. This means helping her get her heart back into normal rhythm with some interesting tricks that might make us laugh afterwards."
February 4, 2021
"Willow had a minor episode late last night, while we were instructed to go straight to Hershey with the next episode, we opted to stay home as it was very minor and we were able to get her calm within seconds of it starting. We also did not want to risk our lives in the snow & slick roads on that long drive. Last nights episode really got me taking notes like crazy, documenting every detail so we can explain what occurs to the doctors."
February 4, 2021
Basically, this is where we are at today...
-EEG came back normal (praise the Lord)
-Holter monitor has not arrived yet, it’s being mailed to us, so as soon as that arrives, she will wear it for 30 days.
- Hershey pediatric cardiology will see her on Monday.
- Hershey neurology appointments are being set up.
- if another episode does occur, we go straight to Hershey.
Until we get more guidance & see Hershey specialists we are keeping lots of notes, have created a journal that Willow can log her own experiences & the way she feels down for doctors.
Her episodes are something that we hope to get officially diagnosed and be able to treat properly, but until we can know for sure, we will treat her as if she does have SVT."
At this point....I was simply taking massive notes like crazy, but still uneasy about things yet felt we needed to trust the doctors.
February 8, 2021
"Here is the most current update & selfie Willow took while waiting for her echocardiogram today. What we know as of today: they can see tachycardia &
she has a bit of scoliosis & pectus excavation. Which may lead us down a road of connective tissue stuff eventually but nothing concerning right now.
Her echo looked great and the muscular function of her heart is good! Praise the Lord!
Many have asked what her episodes look like, here are some of the things that have happened during Willow’s episodes.
- sweating - feeling of heart racing -feeling of throat tightness - shaking - hyperventilating- saying she thinks she is dying - begging to call a doctor - feeling dizzy - near fainting - sick to stomach - extreme fatigue - legs giving out - muscle tightness - eyes feel like they are moving (but they aren’t) - hands tingle - overall weird feeling."
Still no clue what was actually happening, but at this point...I was thankful to at least be getting some answers.
February 15, 2021
"We are on day 5 of the holter monitor. It’s not going so well, as she is extremely allergic to the pads.
I no longer say “it was a no episode day” because as soon as I do, she has one. We have good days and we have days where there are 4 episodes during the day and 3 at night.
Willow also recently expressed she wants to sleep in the living room because she knows at night her episodes are worse in bed, so we now understand why she doesn’t want to ever go to bed and will do anything in her power to stay awake.
On the list this week is working on getting a referral for a geneticist & stalking the mailbox for new pads for the monitor.
We will get this figured out, we will not stop asking questions, researching and praying. We are forever grateful for all the love & support. Forever my kids advocate, forever their momma."
That last statement has remained so true throughout this entire ordeal.
February 17, 2021
"Willow is tired of doctors poking & prodding. She is tired of waiting rooms & covid checks.