Showing posts with label love. Show all posts
Showing posts with label love. Show all posts

Sunday, December 2, 2018

A Mother's Musings: Living with Addie is like . . .


  • sleeping next to a Richter 1 earthquake
  • loving and living with an angel
  • holding a fish out of water
  • seeing every moment and every movement as a miracle
  • when your dog gets hit by a car and confused, he looks up at you with dark sorrowful eyes pleading for help as his body shakes and convulses
  • being perpetually in the newborn stage 
  • getting quarantined
  • an emotional roller coaster--thrilling heights and horrible stomach knots as you balance precariously at the top of the hill prior toward spiraling down to valley lows
  • learning to be a home and hospice nurse
  • watching others eat when you're starving
  • delighting in the smallest developmental movement
  • being under house-arrest
  • playing the game "I love you but I just can't smile" everyday and losing to Addie every time
  • never fully asleep and never fully awake
  • bursting with love
  • a wound that never heals
  • taking one day at a time
  • ever stepping into the dark awaiting the light that will come
  • becoming a massage/physical/occupational/vision/communication therapist
  • a long-lasting longing
  • playing with a doll
  • holding onto hope 
  •  living in the moment joyfully
  • questioning yourself and doubting yourself daily, "Am I doing the right thing for her?"
  • never planning ahead
  • living in constant awe of babies/children--how they smile, coo, eat, cry, crawl, walk, lift their neck, arms, roll . . . all by themselves
  • playing with a tamagotchi toy--where the pet leaves the screen and you're not sure where it went or when it will return
  • trying to dress a barbie-like doll from the dollar star--the knees and elbows don't flex/bend and you must really stretch and nearly tear the clothes to get them on or off
  • intense gratitude for the gift of Addie

Thursday, March 29, 2018

Testing, testing . . . 1-2-3

We’ve got results from tests . . . Yea!  But . . . no answers . . . Boo!

“We do not have an answer in this life for every adversity. When trials come, it is time to turn our souls to God, who is the author of life and the only source of comfort. “Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you.” (John 14:27.)” --Elder Carlo Amado


Testing #1) Addie’s genetic test came back last month.  This epileptic panel tests for 15 known causes of epilepsy.  Addie’s results showed, “3 variances of unknown significance.”  This means either (1) there is not enough data from other children with these same variances to make a correlation (give it 10 years and some researcher will assess the data again, find a pattern, name the epilepsy after Addie or himself, and add it to the Epileptic panel); OR (2) everyone has variances on their genes & these are some of Addie’s.  Addie is still seizing A LOT . . . still has hundreds of seizures/day. The seizures hinder her development in a big way--the cognition side of her brain is not really able to function--we don’t know if she can see or hear us or if we comfort her?? There is little to no emotional response from her as of yet. Its like Chris said on Sunday, “I never knew when they said she has epilepsy that it would mean my baby would be brain-dead.” But--oh, how we adore her!  
“Isn’t your purpose for being on this earth to experience this trial? Isn’t it to accept all the trials of this life for what they are and then leave the rest up to the Lord? Don’t you think that this problem will be resolved when we are resurrected?” --Elder Koichi Aoyagi

Testing #2)  Last month, we received a phone call that the State of Utah required us to get a lab test for Addie called “Lymphocyte Subset 7.”  This simple blood draw tests for Severe Immune Deficiency Diseases (SIDD) All babies, at birth, are screened by the State of Utah to look for metabolic and other disorders.  Her results came back abnormal three times, and thus we were contacted to follow up on the screening. Ahh--maybe this will give us the answers to Addie’s seizures??

The subset 7 lab test did show suppressed immune cell numbers and we were forwarded to an immunologist for instruction.  We met with Dr. Chen yesterday. After reviewing Addie’s chart and medical history, Dr. Chen believes Addie’s suppressed immune cell counts are due to the leaking lymph fluid that caused her early delivery in the first place.  When she had all that lymph fluid pooling in her lungs and tissues, the immune cells went for a swim. They drained out of her body through the chest tubes with the rest of the lymph fluid. Thus each time Addie was screened for the state metabolic test, decreased levels of immune cells showed up.  

We were VERY happy to hear this!  Addie does have an adequate immune system and we won’t have to worry about SIDD anymore as her body continues to build up its immune cells and her levels increase to normal levels.

“Know thou, my [children], that all these things shall give thee experience, and shall be for thy good. “Therefore, hold on thy way …, for God shall be with you forever and ever.” (Doctrine and Covenants 122:7, 9)


Testing #3)   Busy day yesterday! The audiologist fitted Addie for hearing aids at the Utah School for the Deaf & Blind.  At the lowest level--no response; level 2--no response; level 3--no response; level 4--no response. Hmn . . . of course she was seizing.  At the end of the day, we put the aids back in. Chris and the kids believe they saw a response to sound. I’m still not sure. We will test the aids for up to 6 months to see if we can determine if Addie can hear anything with them.  It is difficult to tell because she is still seizuring so much that her cognition is very limited. Even if she can hear, she might not have the ability to let us know due to her developmental delays. We try to observe her eyes (do they widen) or her stress level (does it increase)??

“The test a loving God has set before us is not to see if we can endure difficulty. It is to see if we can endure it well. We pass the test by showing that we remembered Him and the commandments He gave us.”--President Henry B. Eyring

Everyday we hear of the trials and adversity faced by family, friends, and strangers.  You never know when you’ll be “up to bat.” We’ve started a prayer list in our family to keep you all in our prayers.  We certainly have been overwhelmingly blessed by your prayers in our behalf. May you each have the strength to carry on in your individually designed trials.  I can surely testify with my favorite book character Anne of Green Gables that “God is in His heaven; all is right with the world.”  There is nothing that you or I will go through that can’t be made better (or at the very least made bearable) in Christ Jesus.

Mucho amore,

Desi

Thursday, February 15, 2018

Addie Update: Home Again

Quick Update
Our little critter is home once more.  Doctors hesitantly released her to home care on Sunday evening.  In her current condition, she should still be in the hospital. However, due to the high number of cases of RSV and other viruses currently in the hospital right now, the medical team deemed it wiser to send Addie home from the Intensive Care Unit instead of following protocol to rehabilitate on the Infant Floor.  

She's on higher oxygen (2.5 vs. 0.75) need than when she went into the hospital, but since we felt comfortable attending to her at home, they released her to our care. We were also given a different O2 concentrator that will allow Addie to have higher home settings for now as her lungs continue to heal.

It's wonderful to have her back home.  As you know, sleeping and resting in a hospital is nearly impossible for both babe and parents.  Every two hours, the nurses come in to check blood pressure, listen to lungs, administer meds, etc.  Then, with all the beeping machines in between, it is hard to sleep.  Since arriving home,Addie has rested so well.  She slept all of Monday, and Chris & Des each got a brief, but very much needed, nap too.

Thank you for continued prayers for us.  They help more than you'll ever know,

Desi

Wednesday, February 14, 2018

3 Valentine Messages for Addie Supporters

💝“Thou art not yet as Job; thy friends do not contend against thee, neither charge thee with transgression, as they did Job.” --Doctrine & Covenants 121:10

When I  consider Job, my mind turns to his tragic losses of  children, property, and health. He suffered loss upon loss, but what I never understood before now was how tragic it would be to have your friends “contend against thee.” In this experience with Addie, my community of support has buoyed me up and cocooned me from so much sorrow.  I have been completely carried by the prayers, fasting, and goodwill of you all.  In fact, I think one fourth of the tears I’ve shed is in overwhelming gratitude for the ministry of my friends.


💌💌
💟“ . . .by small and simple things are great things brought to pass . . .” --Alma 37:6

I am astounded by the power of small & simple acts of love.  So often as I’ve thought to  bring an offering of love to a friend in need, I am bombarded with thoughts like these: “Oh--this is lame.” Or “This is so small--hardly worth the effort.” Or “My efforts are almost embarrassing--what can I really give?”  Or “Just go home--there is no way you can touch the grief here, and you’ll only make things worse.”  Well--it is now obvious to me that those thoughts are from the Adversary. On the receiving end of much ministry these past 5 months, I am cognizant that the tiniest things matter.  Every act of service and love is like a drop of healing in the vessel of the grieving heart.  The “size” of the effort doesn’t matter--each drop works to  soothe pain and to fill the the heart with overflowing peace.  Every prayer, every fast, every tear, every email, every hug, every smile, every visit, every meal, every gift, every toilet scrubbed or wall washed, every floor swept or vacuumed or shampooed,  every weed pulled, every donation, every sacrifice, every cookie on a plate, every play-date, every reaching out to my kids, every letter, every word of encouragement, every silence of not knowing what to say, every offer, every offering, every thought sent my way--thank you for your ministry. I feel overwhelming abundance & gratitude in the community of true believers that surround me both near & far. My only hope is that I can be as good a friend from now on as you have been to me.  Thank you from my depths!
💌💌💌

💓“ O God, where art thou? And where is the pavilion that covereth thy hiding place?”
--Doctrine and Covenants 121:1,4
In the midst of trial & in much need of guidance, I felt stunned that I could not receive revelation. I asked, “Why are the heavens closed against me when I need help the most?” I wondered, “Where is God?  Why can’t I feel His presence and comfort when I’m in such need?”  “Have I offended Thee?”
In reality, my mind and heart burned with anxiety, stress, loss, grief, pain, sorrow, and sleeplessness.  It wasn’t that the heavens were closed against me, it was more that my own coping mechanisms prevented me from feeling God’s love and receiving guidance.  I had to get to a place of trust in what was happening, a place of calmness, and a place of repentance and humility before I could receive the answers for myself--that took months & months.
Meanwhile . . .heaven got through to me through you!  So often, you became the answer I sought.  You showed up at just the right time in email, text, or doorstep visit.  You said things in passing that answered my question. You didn’t even know that you were acting in behalf of heaven to get through to me.  While I sorrowed at the loss of my own access to God, I marveled that He did not stop in His attempts to reach me.  He just used you! Thank you for listening & for being His ministering angels.

Sunday, December 3, 2017

Addie Update: (play the theme of Star Wars right now in your head)

A long time ago in a NICU far,
far away . . .


Addie
Wars


Jedi Addie squared her injured shoulder to once again meet

her formidable foe:  Darth Ventilator.

“Hwee, hwoo . . . hwee, hwoo,” he breathed.

“Addie--join the force of the dark lung!”

“Never!” Addie cried. 

Over one week, she took deep breaths with her pink lungs and ousted Darth

Ventilator’s power over her, moving from C-pap to High-flow

to nasal cannula, proving that this jedi is ready to head for her

home planet as soon as possible.

The Emperor Electric, however, still works in secret behind the

scenes to keep her in the NICU. Flashing Addie with pulses, he

tries to keep her seizures active, unmanageable, and back

under Darth Ventilator’s and Darth Medication’s evil clutches.

While Emperor Electric continues to hide in the shadows, 

his evil power will soon come to an end under the influence

of Jedi Addie’s Heavenly Father.

Another space journey looms for Jedi Addie & her family.  Her

past battles with Stormtrooper Hydrops caused intense

damage to her ears, and her hearing is severely to

profoundly impaired. Her home planet is now on a mission

to learn new skills in sign language to ensure they can

translate English for her and to ensure

she feels welcome when she arrives.

The battle continues . . . but Jedi Addie will win the war in 

large part to the power of the true force--the answered

prayers of her family, friends, and neighbors supporting

herself and her home planet. 

Till next time . . .

May the Spirit of God be with you . . . .