Showing posts with label hydrops. Show all posts
Showing posts with label hydrops. Show all posts

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?

Saturday, November 11, 2017

Addie Update: Newborn Intensive Criminal Unit

 little holiday humor from my side of the NICU --Love Addie

(Sing to the tune of "I'll be Home for Christmas")

I'll be home for Christmas
just you wait and see.
I just need to learn to breathe--
I'm almost off the morphine.

I look through bars of a baby crib,
though I'm only seven pounds.
And even though I'm on half mom's-milk,
I'm still not swellin' 'round.

Pray me home for Christmas.
cuz' I'm still eatin' through a tube, 
But once I learn to feed myself,
I'll break out of this NICU.

Christmas time will find me
in my own front room,
Drinking a cocktail of seizure meds,
And making a toast to you.
And making a toast to you!

Grandpa Bunny & Me
I'm 7 pounds 11 oz this week!



My new big-girl crib.

Saturday, November 4, 2017

Addie Update: Trick or Treat?



Hi family & friends--

Well Halloween week overflowed with both tricks and treats for little Adelaide & us:

Tricks

Seizures continued to plague our little babe and worsened over the weekend until Monday when the neurologist asked, “When did we add Keppra?” “Saturday.” I asked, “Can seizure meds worsen seizures?” “They can, ” she answered. She pulled it and chose Carbamazepine instead. Since then, Addie is not having visible seizures, though she is having some sub-clinical ones . . . they’ll be increasing her dosage of what I like to call “carbonation med.”

1st attempt at getting an MRI: FAIL! After six hours of no food, radiology called to postpone Addie’s MRI to 3 hours later in the day. So 9 hours without food? That wasn’t a go! By the time they rolled Addie down to radiology, hunger pains OVERWHELMED her. The nurse practitioners drugged her just to the point where she’d have to be intubated--without ability to calm her. So she returned to her room with no MRI and fell deeply into sleep from the drugs. Good thing too since her food wasn’t ordered and didn’t come up until an hour later. Grr!

2nd attempt at MRI: SHUDDER! As nurses rolled calm and sleeping Addie in her bed down to MRI, the IV pole wheels got caught in the elevator shaft transition. The bed kept moving forward but the pole stuck fast. Thus, Addie did a head-over-heel flip as the tubing in her PICC line jerked her little body out of her special mattress and planted her face down and pressed against the corner panels of her bed. Our little babe was no longer asleep nor calm. Neither was her mother! Nor the staff! Terribly traumatic for everyone. In addition, her oxygen tanks kept malfunctioning and terrific & terrible shrill sirens sounded over and over and over again. Addie received drugs to sedate her, but all the rest of us adults just had to breathe deep (or let the tears roll down . . . in my case). She did settle down comfortably for the MRI and it worked out.

Well--there were more tricks, but after writing that last paragraph, my heart is racing. Needless to say, the NICU managers have met with us to both apologize and to listen to our concerns regarding the many TRICKS of this week. They are very gracious to us and will be making changes to ensure such things don’t happen to other little children.


Treats

  • Addie’s 5th chest tube out! 
  • Addie gets the EEG & AEG wires off her head (measures seizures). 
  • Daddy gets to hold Addie for the first time! 
  • Mommy and Addie get more snuggle time this week, too. 
  • Addie gets to actually wear clothes for the first time! 
  • Addie is getting her own Mommy’s unpasteurized milk! Most of it is still spun to remove the fat; but Thursday, they started introducing full-fat milk slowly into her feed. 
  • The Geneticist agrees with Mom that there’s nothing screaming “genetic anomaly” so additional genetic testing is put on hold for now. 
  • The MRI comes back with “‘normal brain development--no issues.” The Neurologist confirms that Addie’s “abnormal baseline brain activity” was more likely due to medication. Seizures may be at the neuron (nerve level)--they are not a mis-function of the brain. Addie will not be “severely developmentally delayed,” as we were told last month. 

When can she come home?

  • Still dealing with “chronic lung disease.” Her lungs need to heal from swelling. 
  • Needs to tolerate fat in her food by showing no reacumulation of fluid in her pleural space (sac around the lungs). 
  • Needs to wean off her high-level respiratory support. 
  • Needs to be screened for her audiology test--her respiration support makes it impossible to get a good reading. 
Please keep our sweet little girl in your prayers/fasting. We will be praying for her lungs to heal so that she may wean from her respiratory support & that she’ll be able to tolerate full-fat feedings.


We send our love and gratitude to you for your love and service to our family--

Chris & Desi

Sunday, October 29, 2017

Addie Update: The Week in Pictures

Sunday: Addie’s pain skyrocketed.  Dr. King said, “Pull the chest tubes out!”
Just chillin'.jpg
“Peace, Baby!”

Monday: Extubated!! The Respiratory Therapists showed graphs and charts to affirm that  
“She’s ready to get that tube out of her throat--after 2 months in intubation.”Mon just before the vent tube is pulled.jpg

“Goodbye throat clogger!”--just before extubation

Mon New Head Gear Breathing Device.jpg
”Will you at least promise me that this is the only time I”ll ever have to wear head gear?”
I traded throat tubes for nose prongs? And just how exactly  was this supposed to improve my life?”--c-papTues c-pap head gear for breathing.jpg


Tuesday: Dr. King took me to full feeds; begins to wean morphine.
“Gee--breathing is HARD work!”


Tues Breathing is Hard Work!.jpg












Wednesday: Best 2-½ hours of the week: I got to hold my mommy after a month of waiting.Wed Trying not to weep for love and joy.jpg
Holding my baby.jpg











Thursday: 12:30 am phone call: “Fluid returned in right lung; difficulty breathing; need to place a chest tube immediately.” Needs another EEG for seizures. Dr. King says, “She needs to go to Primary Children’s Hospital.”
Fri LifeFlight Ambulance transfers to PCH.jpg











Friday: Seizures; Lifeflight (by ambulance) drives Addie to Primary Children’s Hospital.
Fri Addie gets a T-shirt to commemorate her transfer.jpg














Saturday: Settling into a new, LOUD! BUSY! place of healing?  Really???
Fri More seizure monitoring head gear at PCH.jpg

“My costume?? Yeah--couldn’t decide between a Mummy or Frankenstein . . . so I went with both!”

Sunday: Hope your week was better than mine!  :-) Love you all. Please keep me in your prayers! --
Addie (and Chris & Desi)

Saturday, October 21, 2017

Adorable Addie Update

Hi to all my friends that I hope to meet someday--

Yes--this is "adorable" Addie (well-that's what my nurses tell me anyhow).  I'm finally feeling well enough to write again.  The best news this week is that I no longer have any fluid in my lungs.  An x-ray on Tuesday verified that the last little pocket of fluid (abscess? infection?) is no longer present.  It's about time--that water has been plaguing me since before I was born. Antibiotics took care of it & now I don't have to take those extra meds anymore!
   
I have great coloring and my swelling is diminishing.  My once fatty face is now looking more like that of a healthy little baby. . . well, if you cross your eyes and stand back so you don't see the tubes and such.  Ha ha!

I opened my eyes & looked around for 3 hours on Tuesday.  That really delighted my mom.  However, I started having a few twitching episodes.  So my doctors checked my seizure meds and sure enough my metabolism blew through the medication like crazy.  They've doubled my dose to near adult levels, so now I only wake up at midnight when my parents are asleep at home.  Last night I stayed awake talking to my nurse for 6 hours.  My mom sure hopes I readjust to regular circadian rhythms before coming home.

Ah . . . home!  Well--I'm not sure when I'll get there.  The docs are increasing my daily feeds little by little.  I'm at 70 ml/kg today.  I have to get to 120 ml/kg with no fluid reaccumulation in my chest (lung space) and switch from fat-free milk to Mommy's milk before we can even talk about going home.  

Then there's that thing called "breathing on your own."  Yea--I don't have that one down yet. The respiratory therapists are trying to convince the doctors that I don't need so much lung support . . . they are working towards getting my tube out of my trachea and moving to a nose cannula.  It will be AWESOME to not have this tube down my throat--I get daily music therapy now and I'd like to be able to sing along.  Plus--I'll be able to cry!  My Mom is kinda nervous about that--because since I still have chest tubes, she won't be able to pick me up to comfort me.  Just watch out--after this tube comes out, I will never be silenced again!  I have to overspeak Cicely after all! I keep trying to grab it out myself, but my caretakers are too watchful and unclasp my clenched fists too rapidly.  

My Mom gave me a spa day yesterday.  She bathed me with soapy warm sponges and did my hair really fancy.  She also gave me a manicure.  My nails were getting very sharp and scratchy.  I love being so pampered.  Next time I told her to bring green clay for a facial with cucumbers for my eyes and nail polish.

I met my due date this week.  I was due on October 19.  I'm officially two months old from my birth date, but I'd be only a day or two old if I'd made it to my due date. That's kinda weird to think about . . .  so what is my real age? And what is my real birthday?  Maybe I can talk Mom & Dad into celebrating both dates.

My goals this week are to extubate (no breathing tube), to get my left chest tube out, and to tolerate full feedings.  I need to keep making this progress towards healing with NO setbacks! This next week will be the big test.  Please pray for me to reach my goals.  

I'm blowing you all a kiss . . . actually just foamy bubbles from around my throat tubes . . . well--I tried!  

Love. 



Sweet Adelaide-Lemonade

Friday, October 13, 2017

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!!



Saturday, October 7, 2017

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

Sunday, October 1, 2017

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.

Sunday, September 10, 2017

Addie Meets Her Match

Hi from the NICU.  

My parents have been pretty busy this week and have yet to write an update on my progress.  You'd think with all I have to work at just to breathe that they'd understand that I don't need one more thing to do.  But--I am coming to a family who likes to teach kids to work, so I guess it's high time I learn my lessons.

I started the week by meeting the ventilator in the boxing ring.  With a one-two-punch, he knocked me out.  My lungs deflated and mucous built up in those pink sacks.  The Coaches decided I wasn't quite up to battling such a formidable foe.  They took me out of that ring, and kept the ventilator at higher settings.  By Saturday, the ventilator foe took down his punches a few notches. I'm now in training to wean completely off this circuit, but it takes day-by-day exercise of my lungs and very slow progress to turn down the settings.  No one wants to see my lungs collapse again.

In a winning match, I punched the daylight out of my Nitric Oxide Machine this week.  I now carry less tubes, machinery, and beeping in my room.  My prize for winning that fight was a new bed AND a new room!  Yes--I moved from the "Critical" part of the NICU to the more stable patient rooms.  I have a room with a view!  I have natural sunlight to brighten my day and starlight to gaze on at night.  Additionally, I share my nurse with another baby.  This means that I'm getting so good at throwing punches that I don't require full-time coaching anymore.  It's a good thing too because lots of preemies entered the NICU this week, and the coaches are needed elsewhere.

I got beaten up by another formidable foe this week: resurgence of pleural fluid (fluid around my lungs).  I have a moderate accumulation at the base of my lungs, but it is not impacting my ability to inflate my lungs or breathe yet.  The medical team said they can either drain the fluid again and test it for chylothorax OR put me on a fat-free diet to see if it makes a difference so they can then assume it is a chylothorax. (I've already been tested for chylothorax twice--No chylothorax!)  Since I'd been beaten up so much this week, they went with the fat-free diet.  So--now I don't get my mommy's milk.  Instead I get a synthetic brown sludge made of water, corn syrup, milk protein, and chemical nutrients.  Grr!  Intermixed with this, I'm getting pasteurized donated breastmilk from the donor bank.  It has been spun to get rid of all the fat (and many of the enzymes and anti-microbial properties, too). As if I didn't have enough to deal with, right?  Fat-free diet at my age?  I mean what weight do I have to reach to get into these boxing matches anyway? 

The best thing this week?  Kangaroo Care!  This means that my Mom and I got to snuggle skin-to-skin EVERYDAY!  This is great therapy for both of us and helps me recover from all my fights.  Mom gets to hold me for 1-2 hours every day (its the first time I've known her to just sit still--see very good for her).  It is quite a feat to get me out of bed.  It takes a nurse, a respiratory therapist, and my Dad to get me transferred.  First they have to disconnect all these tubes; quickly the respiratory therapist unhooks my ventilator, my Mom picks me up and holds me to her chest, not letting my head turn (lest I pull out my feeding tube and air tube--which tempts me highly!); my Mom backs into a recliner, and the therapist rapidly hooks the ventilator up again, as the nurse and my Dad rearrange all the other tubes, and tuck pillows around my Mom and me and finally cover me with warm blankets.  We repeat the process when its time for me to go back to bed.  Even though it takes quite an effort, this therapy helps me learn to breathe, grow, and bond.  It is one of the most effective therapies available to preemies like me.  I keep hoping my Dad will want to hold me . . . but, he's just not into hospital gown fashion yet!

Well I better get some rest.  I have an entire week of fighting matches before me.  I hope you'll continue to remember me in your prayers.  I need help getting rid of my lung fluid so I can return to my Mom's healthy milk.  I need help learning to breathe without a ventilator.  I hope you know how much your prayers do mean to me and to my family.  May you feel strengthened as you face your own formidable foes this week!

With love,

Little Adelaide-Lemonade





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