Happy Birthday, Adelaide-Lemonade! Your Year in Pictures

Happy 1st Birthday, Addie! You've come so far! We adore you!!

Passing from Delivery ER into the NICU--Aug 21, 2017

1st day of the battle--chest tubes draining lung fluid.

Battling jaundice & praying liver will function.

"Stabilizing"--opening eyes.

Holding Addie for the 1st time--2 weeks old.

Swelling up the 2nd time with fluid!

We didn't see her eyeballs for 3 weeks!

Pitting edema--everywhere we touched you left a dent.

Dreaded seizures.

Healing is so exhausting!

Breathing head gear!

Chasing seizures--another month to go at Primary's.

Sweet little lamb.

Before: Oct 31--costume sitting atop my little body.

January 29, 2018: Finally getting to wear my Halloween costume.

G-tube surgery: my ticket to go home!

Home for Christmas! My present is home medical equipment!

I'm a slippery fish--it takes 2 to bathe me.

Head gear I can live with!

Chest percussion therapy--my daily dose of personal massage!

Darth Addie!  (the cough assist machine)

Addie invited her sisters for a slumber party in her room--can you find all 4 girls?

Baby gymnastics!

C is for Cookie--I hope to try some soon!

Helping my sister with homework!

Catching up on the sleep I rob from my Mom & Dad--Ha ha!

Addie Update: Indignation & Prayers Please

Good morning Family & Friends--

Little Addie is in the hospital once more.  Her need for oxygen superseded the home equipment’s capability to help her, so we took her to the Pediatrian on Thursday. After 5 minutes, she said, “Take her down to the ER. You’re going to Primary’s.”

While they thought she had RSV, the tests came negative for both viral & bacterial infections.  However, the x-ray looks like she breathed some milk into her lungs.  So--at this point, she has no infection (viral or bacterial), but her diagnosis is Aspiration Pneumonia.  

Will you please pray for her little lungs?  She needs to either cough or absorb that bit of fluid in there in order to expand her lungs to their full strength and get her O2 needs back to a normal home range.  

Meanwhile, here’s some political drama we faced at the hospital.  We informed the medical team that we are using CBD oil to control seizures when asked what medications she’s on. We were told we could not use it for her at the hospital. We insisted that this is the only thing that is helping Addie’s seizures, that we are trying to get to a therapeutic dose, and that we will continue to use it. Without it, it will be difficult to get her out of the hospital as much of the lung stress we see with her is in relation to cough seizures which keep her from oxygenating well.   We were firmly told that if we continued to use it, we would be kicked out of the hospital . . . Addie would stay--parents banned!  NIGHTMARE!!!!  INDIGNATION!!!

Additionally, there is NO other hospital in UTAH that will take children.  Every child HAS to be treated at Primary’s.  We could not take Addie anywhere else & be able to use her CBD. To be threatened like that when you are trying to help and advocate for your child is so emotional and so wrong. This direction came from the very top--the lawyers, CMO, etc.  Our doctor bravely sided with us against the hospital administration, and told us to keep pushing.  We produced our paperwork that legally allows us to use CBD oil in the State of Utah.  You only get this paperwork if the doctors at Primary Children sign off on it!???!!!  He took a copy back to the leadership of the hospital and we waited.  Before 5 pm, our good doctor came back with a message that we can use it, but that we needed to be silent about it (so now I’m shouting it out to you! :-).  Because of  the paperwork, they could not legally stop us.

God is gracious and good!  Here’s why: A month ago, I utterly refused to file the paperwork for my hemp certificate.  I felt angry that I had to pay a bureaucratic fee  and jump through all these red-tape hoops to help my child. I thought, “I just won’t speak about it, and no one will know.” An article from the Desert News said that ⅔ of patients qualifying for medical marijuana do NOT comply with the paperwork requirements but use the oil anyway.  Parents I spoke with also said, “Don’t worry about it.  They can’t enforce it.”  Despite my entrenchment, the Spirit kept striving with me.  I felt prompted three times to file the paperwork.  I kept arguing with the Lord why it wasn’t necessary, trying to rationalize away the promptings and getting him to see my point of view.  After working with me for 10 days, I knew I could not go against the strong promptings and remain in good standing with Heavenly Father.  So, I gritted my teeth, wrote out the check, and sent in my application.  As soon as the check went in the mail, a huge weight of fear lifted from my shoulders.  I did not realize how burdened I felt regarding CBD oil.  I recognized in hindsight that I had been  under attack by the Adversary.  All those chattering voices in my head ceased.  My mind and heart cleared.  I could lift up my head and boldly share my experiences about medical marijuana with others.  No more fear energy.  I immediately felt grateful for the promptings and for the Holy Ghost’s continued efforts to break through my stubborness.

“Verily, thus saith the Lord unto you whom I love, and whom I love I also chasten that their sins may be forgiven, for with the chastisement I prepare a way for their deliverance in all things out of temptation . . .” --D&C 95:1

I was chastened by the Lord in my temptation/sin to not comply with the law. I thought I just needed to submit to the crazy law to be an honest, good citizen of my state and of the kingdom of God, but He saw a lot more than I did.  The paperwork became indispensable to me in enabling me to help and stay with Addie.  I just have to shout out there: if you receive a prompting--FOLLOW IT. The God who sees all things truly will ​​provide deliverance.  Additionally, He will “go before your face . . . will be on your right hand and on your left, and  . . . shall be in your hearts, and [His] angels round about you, to bear you up” (D&C 84:88). I have felt that this week.

Humbled once again to my core--

Desi

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

 

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 . . . .  

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 . . . 

Addie Update: Chris changes Diapers!

Thank you to all who joined us in fasting for our sweet baby!  Your faith, prayers, and sacrifices brought happy and good news to us this week.  Here's the highlights:

• A new doctor!  She's older, more experienced, and said our first meeting, "I've seen many of these cases.  It just takes time!"  That was so encouraging after last week's pessimism from defeated-feeling doctors.
• Monday, Addie started getting tube-feedings of fat-free human milk to jump-start her stomach and intestines. 
• She tolerated the initial 10 ml/day, so now she'll get 20 ml/day. She'll increase her feeds every 2 days or so as she is watched for more fluid accumulation. So far no fluid has come back into her lungs! Praying hard!!
• She pooped!  Her colon is working again, and she proved it by letting her Daddy change a very messy diaper yesterday that shot all the way up her back!  What a loving thing to do!
• Addie opened her eyes and looked at us for 15-20 minutes twice this week.  That means the puffiness in her face has diminished enough for her to finally peel her eyes open.  Pools of darkness radiate so much love and peace to us.  She is so precious!!
• Her "cauliflower" ears have flattened out and look less edematous--more like ears now.
• She's looking less taut in her chest area--still puffy, but not extended to the point of tightness.
• Her genetic DNA test came back as "normal." To my untrained heart that means that there is no permanent cause for this fluid accumulation--Addie CAN heal from this!! Super Wonderful News!!

At this point, we are just watching closely to see if fluid re-accumulates. These things can cycle over and over, but we are hopeful that with all of the prayers and fasting, love and faith applied by you, our friends, that Addie will overcome this illness sooner than later. 

Her dear Daddy spends much time with her to support her emotionally and spiritually. I testify today of the power of family love.  Our little ones (and our big ones) NEED to feel our presence, concern, and love.  Family ties are the bonds that last forever and it is never too early, nor too late, to strengthen them.  Don't delay--reach out to your family today!

With much love and gratitude for all your reaching towards us--  Desi

Awake!

I meet Grandma Donna.

My daddy is my favorite pal!

Testing out Grandma Jill's dress.

Thank you for praying for me!!

Addie Update:

Hello from the NICU.

Our sweet Adelaide is in much need of your prayers and fasting
tomorrow.  Please join with us in imploring Heavenly Father to help
her fulfill her mission.

On Tuesday, a doctor told us that we need to consider the "end-game"
for her--meaning: "We've done all we can medically, so you need to be
prepared that she may never get well."  Then on Friday, a Pediatric
Neurologist came and told us that Addie has "abnormal brain function"
and to "expect major developmental delays if she makes it at all".
She then asked me: "What do you hope for in this situation?"

I admit, last Sunday in writing the Addie Update, I felt despair. As
we went through this week, more disparaging news heaped upon us as
words like "seizures" phenoybarbitol" "abnormal" "nothing else to do"
"I need to tell you . . . " piled in.

But--the gospel works! Recentering my faith, I regained my hope
day-by-day. Then in that moment of intense questioning, with tears
streaming and my nose running, I answered the five medical
professionals:

"I HOPE . . . I hope that Addie can come home to us, surrounded by her
family--all of us together in one room. At the NICU, only four of us
can be here together. Earlier this week, you told me that you have
done all you can medically.  Now we will see what Heavenly Father will
do.  I trust in Heavenly Father.  He has a mission for this little
baby, and if it is His will that she live and come home to us, she
will. If it is His will that her life ends here, then she will go home
to Him.  Either way, her mission will be fulfilled, and as her parents
and family, we will support her in whatever capacity she needs until
she completes her mission on earth."

Yes--they stared at me blankly or with condescending smiles of
"okay-then--keep holding onto that 'fairy-tale'." I can't imagine a
life without God.  I feel sad for those who cope with life by denying
His existence.

So--we will seek the Lord and trust in His plan.  You dear friends
have been His hands through all of this.  Thank you for answering our
prayers in so many small miracles as you've served us, prayed for us,
and especially kept our sweet little gal in your hearts.  May you be
blessed by the Father of us all for your continued support and love.

With much hope!

Desi

Addie Update: Check!

If you are able to fast, will you fast for our little Adelaide this next Sunday? We need an extra power boost in her behalf. Thank you for your continued prayers and support. Here’s her update:

If Addie played chess, this week she was an overloaded queen: A piece that has too many defensive duties. An overloaded piece can sometimes be required to abandon one of its defensive duties.

What defensive duty was abandoned: Digestive and Pulmonary. Instead of getting back to digestive system (tube feedings), her nutrition continues through IV vein delivery--day 19 of that. Instead of weaning off the ventilator, the settings have increased beyond what she needed even one week prior.

To avoid a dangerous and close-call of check-mate, Addie rushed back into square one on Monday: a return to her oscillator, nitric oxide, chest tubes, no more snuggle time with Mommy, and a continuous morphine drip. Additionally, her aggressive opponent would not give her any room to maneuver. Addie confronted her opponent's’ attack of low-blood pressure and sepsis (infection) with a pawn army of steroids and triple antibiotics. Additionally, she called in her knight to deliver another blood transfusion to keep her in the competition. She’s hooked up up to two delivery pumps with 8 different tubes delivering all her meds. She also received a double-lumen (6 port) PICC line this week after a successful PICC placement failed the next morning due to a leakage.

Her rook tried to fight off the enemy’s continual fluid build-up (up to 1 pound daily) using tools of albumin transfusions, electrolytes, diuretics. The rook did a good job on Wednesday by delivering FULL diapers. However, the rook couldn’t keep up with the flood of fluid that continued to come this week, so the rook was captured. The other rook continues to fight the flood with a new medication (Octreotide) which may help dry up the continuous edema accumulating throughout her body. So far, results have been minimal. Despite tube drainage, x-rays of the lungs show the opponent continues to attack with fluid in the pleural space.

Lastly, the enemy sent a wave of perceived seizures upon Addie this morning. Her castle responded by pulling out electrodes from the dungeon and placing them all on her pretty head. A video camera will now record jerky limb movements in correlation with brain electrical movement for the next 24 hours, while a epileptic tech at Primary Children’s Hospital monitors the screen and results of the brain activity scan. So far, Addie has not shown signs of brain activity through the tremors and “seizing”--telling the officials that movement may be due to an increased feeling of pain from the chest tubes/vent/et tubes/iv/and PICC lines running throughout her tiny body.

Officiators of the game may deliver a game-changer tomorrow when the results of a chest ultrasound are analysed. There is potential that the next tournament may be played at Primary Children’s Hospital.

Onlookers of the game are so proud of little Addie for choosing to stay in the game despite continual set-backs. We know she could just excuse herself from the game if she chose to, but she continues to play. We are so inspired by our little child. She needs your prayers. Thank you for your love and service to our family.

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