The End is in Sight!!

After our appointment today with Dr. Hatley, it appears that dealing with Ellie's ostomy will soon come to an end!!  I cannot tell you how happy that makes me!  Today, we will begin irrigating her bottom once a day, for a month.  The office will call us soon to schedule a reconnection date.  This whole ordeal has been just that... a MAJOR ordeal.  It has caused a bit of stress to this tired mama, and I will be more than thrilled to see my tiny little girl be "normal" again.
I think the hardest part of the ostomy is the look in Ellie's eyes when I am changing the bag.  The drs and nurses have ASSURED us that the intestines do not have feeling (and i guess i believe them), but it sure makes me question it when she is screaming at the top of her lungs.  Changing the bag is a 30 minute process...20 minutes if i have Eric or someone else helping.  It starts with tearing the old, leaky bag off the sensitive skin.  Then straight to the tub for a bath and cleaning.  From there, we wrap her up in a towel to let her get warm and dry for a few minutes...or until she stops screaming and can relax.

We put part of the towel between her skin and her prolapsed stoma in an effort to minimize the slime and poop coming off of it from getting on her dry skin.  I use powder to thoroughly dry the area, and cut a hole in the bag.  After rolling out some ekoderm, we wrap that tightly around the intestines to create a barrier and protect her skin.  Next comes the bag, lined with paste...I use some pressure and heat from my hand cupped over the area.  Making sure it is properly stuck to her belly, I put one layer of duoderm (compliments of Uncle Bill and Bonro) over the entire bag.  We quickly get her dressed and held, while the other cleans the area... scraps of paper go to the trash, blood and poop stained towels, blankets, and clothes get sprayed and go to laundry and all supplies go back in the box on the kitchen counter.  We have a system, and it works.  But, BOY, will I be happy to throw that stuff in the trash!!!!!

Though I will look back on these four months and remember all of the WORK and SCREAMING and STRESS and TEARS and FRUSTRATION and INCONVENIENCE, I remind myself of all of the ways in which God has been SO good to me, even in this.  Thank you, Jesus, that my child will never remember ANY of this.  Thank you, Jesus, that this is not a permanent fate for my baby.  Thank you, Jesus, that the brilliant doctors were so quick to catch her perforation and intussusception.  We have much to be thankful for ...  and one of those is an upcoming surgery date!!!  :)

A Day in the Life...

March 28:  I was just laughing at how unproductive my day has seemed thus far, so i thought it would be a good time to document how my day unfolds.  Here is what a day in the life of a mom (still on maternity leave), a dad (who takes the 2 yr old to school then goes to work), a 2 1/2 year old Eve, and three month old twins looks like...

3:30AM...wake up to a screaming, hungry Ellie.  I am pushing the girls through the night, so i hold her until she falls back asleep.  5:30AM...lay Ellie down in the boppy so i can pick up a screaming, hungry Clara.  Hold Clara until time to warm up bottles (5:55AM).  Feed both girls.  Lay both girls in their crib (in the office).  Go back to bed (6:20AM).  Get up to a screaming Ellie at 6:30AM, give her pacy and go back to bed.  Ellie up again 6:45AM, go in office to find both girls unsettled and upset.  Give gas drops and pacies, go back to bed.  Eve comes in room at 8AM.  Crawls in bed and wants to watch a Barbie movie.  Eric starts that and gets her milk.  9AM...wake up to a screaming, hungry Ellie.  Feed her while reminding Eve to tee tee in the big girl potty at school and NOT in her pull up.  Burp Ellie, change her diaper, empty her ostomy bag and lay her on my pillow.  Make Eve a juice cup.  Tell her how beautiful she is as she and Eric leave for school.  Get Clara.  Wake her up and feed her (9:30AM).  Burp her, change her diaper and lay her on Eric's pillow.  Eat a bowl and half of Apple Jacks in the bed while watching "Didn't Know I Was Pregnant" (I NEVER watch this show, but have to write it down since it happened today :))  10AM...lay Ellie in crib for a nap.  Spray the shower with Tilex.  Fill sink with hot soapy water to clean last nights bottles.  Prop Clara up for a nap on bed, give her pacy (10:30AM).  Check on Ellie (asleep).  Scrub shower.  Hear Ellie screaming.  Go give her pacy.  Scrub shower.  Ellie screaming.  Give pacy.  Scrub shower.  Ellie screaming.

Hold and rock Ellie.  Clara screaming.  Give Clara pacy.  Try to console Ellie, impossible.  Sit on bed to feed Ellie (11AM).  Clara screaming.  Make Clara's bottle.  Put them both in my lap to eat.  Both fall asleep.  Lay Ellie at foot of bed and Clara at head of bed for nap.  Both wake up (of course).  Prop up both bottles for them to finish.  Notice dust bunnies on the dresser in our bedroom.  ugh.  Pick up the four used diapers on my bedroom floor.  Give both girls pacies and come in here to blog.  Ellie screaming.  Give Ellie pacy.  Come back to write.  Ellie screaming.  Give pacy.  Come back to write.  Ellie screaming.  Put her in straight jacket (aka a VERY tight swaddle).  Come back to write.  Ellie screaming.  Bring Ellie to the computer with me so I can write.  Clara screaming.

Give Clara pacy.  Come back to write.  Girls nap for hour and half... all of this and it is only 11:59AM... the first half of my day.  I still need to shower, eat lunch and finish scrubbing the shower before 1 so i can leave to pick Eve up for school.  I'll let you know how that goes shortly :).

PS... I LOVE my life...and the girls really are typically VERY easy to console, but they do like some attention... my own doing, I know.  They are spoiled.  

Looked at 3 blogs until 12:10, then into the shower.  Finished scrubbing shower while taking one.. worked nicely.  Clara crying.  Fixed a bottle (snack-sized) to hold her over until 2.  Preheat oven for lunch.  Fed Clara.  Eric comes home for lunch.  Burped her, put her down.  Eric reminds me that I have left a paper bag full of chips in the oven (nice).  Made the next eight bottles.  Dried hair, makeup, brush teeth (is this the first time i am doing this all day?? sadly, yes).   Put on lotion.  Realize I only shaved ONE leg while in the shower.  Started a load of blankets, burp cloths, and sleepers.  Eric stays home with little girls.  Grabbed lunch and a drink and got in van to pick up Eve (1:15).  Prayed she used big girl potty.  Got Eve (1:30).  No luck with the potty.  Will try again tomorrow :).  Eve shows me her binoculars she made and I make her go potty for a piece of chocolate.  Drive home from school to find Eric with Ellie trying to console her on front porch (2pm).  Make Ellie's bottle.  Feed Ellie.  Listen to story about the hermit crab that came to Eve's classroom today.  Put Eve down for a nap.  Move dryer contents to chair and washing machine contents to dryer.  Burp Ellie, change diaper and love on her a minute. Lay her down in boppy.  Wake Clara up (2:30pm).  Feed Clara.  Burp Clara, change diaper and love on her a minute.  Put both girls in swing.

Come to write.  Ellie fussing, put in pacy.  Come back to write.  Vacuum and mop the hardwood floors.  Clara fussing, put in pacy.  Go back to the floors.  Ellie screaming, put in pacy.  Girls nap for hour and half.  Finish floors.  Make bed.  Put Chicken Pot Pie from freezer into oven for dinner.  Move dryer contents to chair.  Start folding clothes.  Eve wakes up (4pm).  Get Eve an apple and juice.  Try to finish folding clothes.  Ellie fussing.  Love on her.  Eve crawls on hardwood floors with apple-sticky hands.  Help Eve go potty.  Give Eve a pop for licking Ellie.  Get baby dolls out for Eve to play with.  Feed Ellie (5pm).  Clara crying.  Feed both girls (5:15pm).  Eve calls dad and tells him to come home.  Dad finishes Ellie's bottle.  Burp Clara.  Put her in bouncy seat.  Check on dinner (6pm)...still frozen.  Call Firehouse to order sandwiches.  Take Eve to get sandwiches (leave dad with the little girls).  Eat dinner.  Ellie and Clara screaming.  Dad gives pacies.  Continue dinner.  Ellie crying.  Give pacy.  Finish dinner.   Take Chicken Pot Pie out of oven and put in fridge for Wed night dinner.  Dad runs an errand.  Girls nap for an hour.  Start Eve's bath (7:15pm).  Pick up the four used diapers on the living room floor.  Lay out pjs for Eve.  Bathe Eve.  Brush Eve's teeth and hair while she puts Ellie's pacy in her mouth.  Feed Ellie (8pm).  Put "Tinkerbell" on while waiting for Dad to come home.  Burp Ellie, change her diaper and empty her ostomy bag.  Get some smiles from Ellie.  Go upstairs to put Eve to bed with Dad and Ellie.  Wake up Clara.  Start feeding her.  Dad finishes.  Lay Ellie in bed for rest.  Dad and Clara snuggle on couch.  Eve announces from her bedroom that she has taken off her diaper.  "Dont talk about it," she says (9pm).  Dad calls her to come downstairs.  She doesn't have on her diaper and she has pooped.  Dad takes her to bathtub.  I go upstairs.  See her clean diaper at top of stairs.  ugh.  Clean up poop off the floor, in her room, beside her Tinkerbell nightlight.  Tell Eric "glad I'm writing all of this down!"  Sit down to write (9:30pm).  Ellie is peacefully asleep.  Clara is peacefully awake. Dad entertains Clara.  Clean kitchen from dinner.  Finish folding laundry and put it away (most of it).  Sit to talk with Dad for a few peaceful minutes.

10:30pm feed both girls.  Burp, and play with them for a few minutes.  Make Clara a new "roll" for the bed.  Lay Ellie down in crib.  Clean 8 bottles.  Make 8 bottles, put in fridge.  Make Eve's lunch for Mother's Day Out tomorrow.  Put in fridge.  I am going to bed at 10:51pm.  Eric will feed them again at midnight, and give medicine and vitamins.  We will start all of this over again :)  

REFLECTION FROM THE DAY:  The girls seriously were unusually fussy.  Ellie is typically more vocal than Clara, but today was a bit much.  This week is the week before Spring Break, which means I have to get my house ready for our renters to stay here.  On a normal Monday, I would not have been so adamant about finishing my chores.  Hilarious day, overall...especially now.  Never know what to expect!

never say NEVER...around Eve

Eve is on this kick about making everyone "talk nicely".  Whenever she senses someone upset or frustrated or, heaven-forbid, angry, she throws her little hands up in the air and says "dont talk everyone...dont talk!" she look at us with little puppy dog eyes and announce "you've got to talk NICELY!"  it is the cutest thing.

Eric was recently telling me a story about his day and part of it was "never in my life have i ...".  When Eve heard that, she was not having it!  She went right up to her daddy and said "you cant tell mommy NEVER, daddy!  dont say never!"  

Mrs. Nadean (or na-maw to Eve) has come to stay with us for a few days to help with the girls.  When she arrived Monday night, I asked about her trip.  She told me that she made "no stops" along the way.  Eve looks at her and says "dont tell my mommy STOP, you've got to talk nicely!"

i'm not sure where she is getting this from, but she is serious about it :)  i love that girl.

why to blog...

Thank you, Kristen, for starting this up for me.  One day, I am sure I will be glad I have written all of these things down :)  Eve is at such a fun age.  She is incredibly smart and witty.  Eric and I are amazed when we hear her catch on to things...even when they don't make perfect sense!!

After her nap last week, I went up to sit on her bed.  I started scratching her back.  She rolled over, looked at me with the sweetest eyes and said "MOMMY!  That ... smells ... delicious!"  A little sensory confusion, but adorable!

Last night at dinner, she was eating her first turkey pita.  After a few bites, she asked for jello.  I explained to her that she needed to eat her dinner before she could have jello... she says "I dont think I understand." :)  Eric and I burst into laughter.

Eve has a tendency to be a little dramatic.  Ok, a LOT dramatic.  My word for her is "ridiculous".  I'm constantly saying "Eve, dont be ridiculous" or "that attitude is just ridiculous".  Recently, while jumping up on her bed and landing on her bottom, she stopped, looked at me with a serious face and said "am I being ridicilus?"

Eve absolutely loves her sisters.  She asks for them every morning when she wakes up.  She runs to them if they start to cry.  She shoves a pacy in a mouth and is so proud of herself when it works.  She cannot quite tell them apart.  Usually, she starts out with "is that the one with the boo boo?"  She refers to them as "that baby" or "the baby with the flowers".  She loves to take a bath with Clara (Ellie cant get in the bathtub with her ostomy bag on).  We put Clara's head in Eve's lap and Eve will hold on to her sides while I wash Clara off.  It is precious.