Showing posts with label friends. Show all posts
Showing posts with label friends. Show all posts

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.

Monday, December 25, 2017

Addie Update: I am Home for Christmas!

Merry Christmas (a.k.a. in sign language) 
She's home!  Thank you to all the doctors, nurses, RTs, and staff who made this possible.  And thank you to all our friends, neighbors, family, and even strangers who have prayed her 'alive & home.' We love you!!

Onto the next mountain. . .  

--The Wightmans




 

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 . . . .  

Monday, November 27, 2017

Addie Update: In one word . . .

. . . . . . . . SEIZURES . . . . . . 






************
 Fast Sunday is "fast" approaching. If you can add our baby girl to your fast this Sunday, we'd so appreciate it.  We need help for the neurologists.  They are trying hard to find some combo of seizure meds for Addie.  So far no go--they need Heavenly help.  

And here's a Thanksgiving message I wrote this week for ThanksgivingHeroes.com. I thought you might lift the gloom from Addie's one-word update.  Love you all! --Desi
*************


I just stepped into home after a 12-hour day spent at the hospital when my son found me and said, "Mom--there's a firetruck outside our house with its lights on. "  

"Are you teasing?" He so loves to play practical jokes.   I felt too exhausted to "come and see" as he beckoned, but finally I realized he was in earnest.  

"They are probably just checking on stuff across the street. Or maybe we have a fire out back and they're coming to tell us." I knew I should've changed the 9-volt batteries in the fire alarms!  Sure enough, the blinking fire truck truly was parked outside our house. 

"Maybe they're lost!"  Then the doorbell rang, and two firemen stood on the porch wearing huge smiles and carrying an overloaded cardboard box.
 
"Do you have room in your fridge for this?"  I laughed and said, "No." They didn't listen and marched right in the door to the delight of the children and the confusion of the teenagers.  Setting the box on the counter, they said, "Happy Thanksgiving." We shook their hands in overwhelming surprise and bewilderment.  I asked my husband, "Who do we know in the fire department?" and we all laughed again.

After they left, our family gathered around the counter and looked in the box: an entire Thanksgiving feast stared up at us out of that deep box!  Instant cheer, a few tears, and a bit of chagrin showed on our faces.  "Are we on Random Acts?" my son asked.

We've spent 20 years nurturing self-reliance and getting to a point in our family where we didn't need to rely on anyone.  We like to be on the serving end, and it is hard to be in the position of need on any level.  We always know of someone worse off--never feel quite deserving.  The teens asked, "Surely we don't need this--who could we pass this joy to?"  My husband said with tears in his eyes, "This isn't because we're in need as much as it is because people love."  

We've spent the last three months nurturing our little baby Addie in the Newborn Intensive Care Unit.  We've stared at death twice as she has faced more set-backs than leaps forward. We are so grateful that she is alive and doing very well, especially considering where she's been and how much she has suffered.  We do not have a diagnosis; nor will we.  She's currently facing seizures that even adult medication cannot control.  It is frightening.  I cry . . . a lot.  We also have great hope that her life is purposeful and that her mission will be fulfilled.  We will help her through every challenge now and future.  We trust our Heavenly Father in this immense mountain she & we must climb.  

We wouldn't wish this on anyone, and yet my teenager said, "I hope when I grow up I have a NICU baby!" 

I marveled at the irony of her statement. Built upon the outpouring of love she's experienced from the kindness of friends and strangers, I feel tremendous gratitude. No one wants the accompanying challenges that spark such mercies, but how wonderfully humbling it is to find that in the midst of the mountain trail, you are carried on the wings of God's children. Lifting our spirits, our hearts, our hopes in all the goodness of mankind, you make it easier to ascend the peak.

We love you.  Thanks for Giving!

Chris & Desi 

All the kids got to hold Addie for the 1st time this week . . . 








Sunday, November 19, 2017

Addie Update: The Never-Ending Story

. . .This is the story that never ends.
It just goes on and on my friends.
A mother started writing it not knowing what it was,
And she'll continue writing it forever just because . . .
(go back to the beginning )

        So-- 
So . . . so . . . so
Addie's progress is
     Very
S--L--O--W.

BUT . . . at least its in the right direction!

This week an x-ray showed clear lungs BUT. . . 
also a fracture on her right shoulder.
(Recall the MRI adventure in the elevator?)

Addie weaned her way down on morphine, BUT . . .
she still has 2 weeks to go until she's through with it.

She weaned down to C-Pap level on her respirator, BUT . . . 
when her breathing tube fell off her nose, she had no issues breathing on her own.
(Okay--it was like 45 seconds--we get easily entertained around here.) 

She continued to host more seizures, BUT . . . 
on Thursday, she didn't have any all day.

She made it (today) to full fat breast-milk, BUT . . .
she still has to get to 150 ml in volume from 120 ml.

She's on A LOT of drugs that she needs to outgrow, BUT . . .
she is growing now--she's up to 8 pounds!  
(Yes--I know she's nearly 3 months old).

We wanted her home for Christmas, BUT . . . 
The doctors say to expect "after the new year."
(Say what?  That's a pretty broad projection! Can you narrow it down a bit?)

All the babies she came in with graduated, BUT . . .
more recruits have joined her, and she now "looks" like the healthy one.

We are stretched in every way, BUT . . . 
you wonderful friends and family encourage us with your emails, prayers, concern, service, and most of all love.  

We hope you enjoy Thanksgiving, AND . . . 
know we will be thanking God for you, AND . . .
that our little Addie is ALIVE!!!!!

Until next week--this is the story that never ends . . . 
Man, I'm exhausted!

Who do you know that looks this great in a diaper?

Sunday, August 27, 2017

Update on Adelaide

Hello Good Friends & Dear Family--

What a week!  Addie passed through the window from the operating room directly into the Newborn Intensive Care Unit on August 21, 2017--purple and lifeless looking at 5:08 pm.  Chris visited her just before 10 pm that night to find her stabilized but in critical condition.  She's remained critical but stable throughout the week--the baby in need of the acutest care currently in the NICU.  We'd like to graduate from that status, but in order to do so, Addie needs to have her chest tubes removed & to wean off the oscillator (ventilator) which is her "breath of life" currently.  

Addie has a nurse and a respiratory therapist monitoring her continually.  A Licensed Practitioner Nurse heads up her care under the direction of the Neonatologist & meets with us daily to update us on her status. Other members assisting her include a pharmacist, a registered dietitian, and some students in residency programs, etc.

We are blessed to visit Addie daily and give her hand hugs.  Each of the children has been able to visit her, and of course that just makes us all attached and in a longing state.  Elise was able to powder her creases to prevent fungal growth with an inviting, friendly nurse.  I was invited to change her teeny diaper one day too by another inviting nurse.  

As of today, here are some of the the wonderful steps of progress Addie has made this week:

1) Her swelling has decreased--which means her body is starting to reabsorb some of the water.  She weighed 5 pounds 7 oz at birth (water weight).  They believe her actual weight if more like 4 pounds.  She's beginning to look tiny instead of large and bloated.  It is great to see her get to her true form. 

2) After a few days of little to no urination, she started "peeing" both in and out of the catheter--so today they removed her catheter & she will now have diaper changes more often! :-)  We're super happy about that because her body is beginning to function the way it should.  The fluid in her tissues now has an outlet--the right outlet.  In connection with this, they tested her kidneys to ensure proper function.  All is fine there. If she continues to need diaper changes, they'll wean her off the diuretic and see if she can function without it.

3) The chest tubes continue to drain fluid but it lessens each day.  We had a scare one night with an 11 pm phone call from NICU.  The nurse used the wrong protocol to "unclog" the chest tubes & flooded 10 ml of this stroke medicine (also used to clear clots in tubes) back into Addie's lung space. The medicine went to work and dissolved all the healing clots that kept her from bleeding into the drainage tube.  The staff suctioned off 12 ml of bloody fluid at that point to try to get the medicine out.  They gave her another round of plasma (blood transfusion) to assist in regaining the clots they'd lost.  The next day, the blood drainage ceased, and things returned to "normal".  Phew! The doctor assured me they are reviewing their protocols and procedures to ensure something like this never happens again.   Pray for the nursing staff!  They are human angels, so they can still make errors, and thus, they need heaven's help to guide them in the care of these precious children.

4)  They put a feeding tube into Addie's tummy last night & primed her with some of my milk.  Today, she "pooped" out some meconium--6 days late, but we'll take it! :-)  This is a great sign that she tolerated the itty bitty milk they gave her & that the stomach and intestines are prepared to function normally.  They will be increasing incrementally the milk they give her until she can be weaned off the IV feedings and go to straight milk.  No chocolate for me! :-)

5) Throughout the week, they've run tests for viruses, bacteria, liver function, blood clotting, kidney function, heart & lung function, brain function, etc.  Every test has come back within normal range.  The cause behind the pleural effusion continues to mystify the medical staff. 

6)  Currently, they are using light therapy to decrease bilirubin levels (jaundice).  Now that she is beginning to poop, Addie will be better able to rid her body of the bilirubin on her own.   

We love to see every little change in our cute munchkin.  We're anxious to see her eyes--they've been hidden for days under her "sunglasses."  I am never good at saying "goodbye".  I'm in a position where I have to say "goodbye" everyday!  I will tell you what faith is--faith is putting mascara on every morning in hopes that maybe just that day, it won't be washed off later that afternoon.  Chris gave me a good perspective: "Desi--just think, most mothers don't get to see what their baby looks like at 31 weeks or hold the baby's hand or touch her nose."  I am grateful for these little things I can do!

I am so grateful for the angels, seen and unseen, that watch over Addie when I cannot be there.  I am grateful for your fast last week & continued prayers this week in Addie's & my behalf.  I have been carried on the wings of your faith,which helped open the windows of revelation to us in knowing that Addie needed to enter this world immediately in order to heal.  We are seeing the blessings unfold as she makes progress to wholeness every day.  

I am grateful for all the willing hands that have helped get kids to & from school, brought meals, watched Cicely, and made many offers to assist in any way (which will still be taken advantage of! :-)  I'm especially grateful to the two friends who woke up extra early to milk our two cows this week and still make it to work on time.  Few know how difficult it is to milk an ornery, kicking cow, who just gave birth last week and is recovering from a swollen udder, blistered teats, & calf separation! (Wait--am I describing myself? Ha Ha!)  Thank you for taking that high-stepping mad cow on, for dealing with kicked over buckets of milk, and long, sleepy days at work!  Our family will never forget!!

I love you all.  May you feel the power of God in the details of your lives.  He is there, very aware, very much desirous to help. Ask, Seek, Knock!  I've felt His sustaining power this week in more than I can detail here.  We are calm; we are at peace; we take each day as it comes and as a gift.  May you feel that power of Christ in your life too in whatever situation comes your way.  

With love--Desi & family