Recovering after Recovery

Sooooo...we started "recovery" out like this (pic below).  I mean...seriously...she's still cute when she's stinkin' mad!  Believe it or not, Lily actually didn't mind the arm restraints.  I thought for sure I would have a wrestling match each and every time...but before nap time or bedtime, she would always point to them as if saying..."ok, now THAT is next...THEN the blankie, THEN... cuddle with me."  She knew the drill and would even hold out one arm first for us to fasten, then the other arm (as she whimpered oh so sadly).

These last 2 weeks consisted of our everyday routine...except the fact that we had to feed her by syringe and douse her mouth with watered down alcohol-free mouthwash (there is no word to describe the bad breath!).  That was not fun for anyone.  Then Lily decided (all upon herself, mind you)  that she would like some household responsibilities.  She fumbles underneath my kitchen sink and finds the wood cleaner and the actual cloth I use every time.  What can I say?  I'm loving the help!

After some impressive dusting...Lily needed a break.  She's like her Daddy...

with wanting full control of the remote!

And....back to dusting.

As a reward for such amazing work and creating a "dust free" zone...

Lily requested more chocolate pudding!

The last 4 days of her 2 week recovery consisted of heading north to Lily's MI cottage.  

The long Memorial weekend consisted of ...fishing...

Here's our good friend Emily ...she caught a BIG one!

 Some hangin' with Gamma on the dock...

Playing "capture the flag"...

Paddling on a raft with friends...

Deep talks with Gampa

And capturing "pet" frogs ;0

And Lily's favorite...driving the boat with "Ba Ba".

There's nothing better than ending the day with a bath in the kitchen "farm sink."  

Happy happy happy girl!

We drove back home late on Memorial Day.  It was a longer drive to and from because of the holiday weekend traffic.  Lily did fantastic each 5 hour way!~  So proud of her.  On the way back, I caught Lily staring at me in the dark car.  I could see her eyes...so serious.  It was evident she was in deep thought.  This little girl is a thinker... and very meticulous in everything she does.  She's very smart and possibly (dare I say) ...brilliant.  She scares me ;) ...because she is THAT smart.  But, it was then...when I caught her stare that it occurred to me..."does she think we are going to hand her to someone else?...like she was handed to us?"   I wonder sometimes because...we have had to hand her off to so many people in the medical world.  She's had a lot of appointments.  She's seen A LOT of people.  I wonder.  I hope and pray...she knows for certain that we are IT.  

We are her mommy and daddy forever.  

We are her family.

The other day, Lily and I met Noah at the park for his class picnic outing.  Lily started fearlessly  going off by herself and we had to call her back several times.  She would wave "bye bye" and walk off.  As we went after her, Noah says with his cute lisp...

"Ahhhhh, she's willwee (really) growin' up fast!"

Yes!!!  Yes, she is Noah...and so are you ole' man!  

I think Lily is recovering just fine!

Next appointment is in 3 weeks.  The surgeon will check her palate again and then it's speech therapy time.  Just wait til' this little girl starts talkin'!  There's no telling' what's going to come out ;0

Love to all... D&N

Home after Surgery

We are thrilled to be home!  Lily was discharged today and everything is looking great!  We are so grateful that all went so well!  AND, we are soooooo happy to be getting our ole' Lily back with smiles and laughter!  

Much thanks to Lily's Gamma and Gampa and her Mima (my mom)  who helped tremendously with caring for our boys.

Yep...Lily is back to herself!

Our biggest challenge the next 10-14 days is feeding Lily and her sleeping soundly and comfortably.  She is very independent...so feeding her with a syringe has not been easy.  And her choices are limited.  Sleeping with restraints on her arms so she does not harm her mouth is not her first choice.  Prayers addressing these would be much appreciated.

Thank you all!  love, D&N

Recovery

Lily is doing great.  Last night was a bit tough.  She was uncomfortable and couldn't settle down to sleep.  Nurses are in and out every 2 hours checking vitals and alternating Tylenol and ibuprofen.  Hence, anytime she did get sleep she was woken up.  But, this morning she is doing beautifully and even took a walk down the hall.  And our little "3 point stance" Princess has been eating like a champ this morning.  We have to feed her through syringes for the next 2 weeks so that we don't interfere with the healing.  So far chocolate pudding is the clear winner.

This was post anesthesia ...her face was quite swollen.

Thank you for all the prayers, support and positive words.  Feedings will be challenging for next 2 weeks.  And she needs to wear arm restraints so she does not dig in her mouths.  Let's just say she is already frustrated.  I feel bad for her.   Hope to get discharged today.   This will all be behind us soon.  Thanks again!  D&N

It's GO time! Surgery for Lily

Here we are!  Lily is in surgery right now.  I'm actually doing ok.  No tears for Momma.  But "Ba Ba" (aka: Daddy) was a crying mess!  Just kidding!  No tears from him either.   I didn't like thinking about what she must be thinking when they took her away.  Or how scared is she?   They were very nice and held her as they walked away.  So I choked back some tears there.  Dr. Corcoran (not pictured) said to us that she would care for her just like she was her own child.  I really like her.  She's real and has excellent bedside manner.

The morning went well.  I got up about 4:30am and we got Lily up about 5:15 and got her in car right away.  She wasn't crabby or anything.  She was very easy going.  She did not care for the hospital gown.  I think she didn't feel like it was "her color." ;)  But most of all, Lily could not stand the tag they put around her ankle.  She was obsessed with it and was quite frustrated.  But she settled down.

Here she is in her 3 point stance...ready to tackle anything!  She's focused!  She's motivated!  She's got team spirit!  Go Lily!  I'm so proud of my girl!  This is where her strong will and determination (all God's work!) will pull her through.

We've had lots of questions on what exactly does a cleft palate look like.  Well...here's a pic.  Lily's is a rather wide 1.5 cm trench from the very front (right behind her front teeth) to the back.  She does not have a nasal floor.  Hence...she could sneeze noodles and CheezIts :) and have a water fountain of liquid come out of her nose after drinking from cup.   They will pull the muscle together from both sides and close it up.  It's common that they can't get it all the way 100% closed.  Hence...she could have a small hole or two.  And yes...this can effect her speech.  So...we shall see what happens.  Her speech up to this point has been "ma ma" and "umm."  She's doing better at sign language and certainly has the "more" sign down for more food! 

The ENT came out to tell us that he did put tubes in her ears.  She had both ears full of fluid and heavy wax.  Hence, she did fail a hearing test a few weeks ago.  Sounds to her have felt like when you are underwater listening to sounds above water.  Her loss was about 50% but will come back.  So we knew it was inevitable.  Now she should have full hearing.  She will get another hearing test in 4-6 weeks.  I'm hoping bedtime will be more comfortable for her now too.  She would get so angry and tearful at bedtime and I think it is because it hurt.  Maybe she will hear her screaming better now too...and won't be as loud ;)  lol.  

Still waiting to hear from surgeon.  Thank you all for ALL your prayers!  xoxoxo

Here's a pic from last night.  She had to have an "antibacterial" bath.  She likes the bubbles and loves to give herself a beard.  She tends to eat the bubbles too...so hey...she had a clean mouth for surgery!

Happy Mother of 3

Happy Mother's day!  I hope you had a day full of peace, joy and love!   My day was quite relaxing with no agenda ...no places we had to be.  We just got to be together on a beautiful day.  I'm really OK with that!

So my mind has been on Lily's surgery which is this Tuesday 5/13.  I'll never feel like I'm prepared but I certainly pray up every chance I get.  All and all, the procedure to close her cleft palate and put tubes in her ears will take about 3 hours.  I'd like to say I'm good, prepared and have all the faith in the world.  But, I have my moments of weakness, tears and anxiety.   Lily will be in the hospital for a minimum of 24 hours and could be up to 72 hours depending on her and how she is taking in fluids on her own.  Obviously, she will be very swollen and it will be difficult to swallow.  The first 5-6 days will be challenging for Lily with drinking and being fed from syringes.  The following days will be better ...but all soft foods.  She is supposed to wear splints on her arms to keep her from reaching in her mouth.  Ugh!  After 2 weeks of recovery, Lily will see the surgeon to make sure her scabbing is healed and hopefully we will get the green light to go back to regular foods.  Let me tell you, Lily lives to eat!  The girl can polish off a lot of food faster than anyone!  What if she becomes one of those tiny people that wins those hot dog eating contests!  Seriously!  We can't figure out where it goes!

I'm hoping Lily heals quickly!  The girl loves the outdoors.  Here she is running through our backside of dandelions by the pond.  

 She's catching her brother Noah!

 She loves throwing rocks into the pond with Noah.

 Love that smile!  And she loves her "Pebbles Hair-do"!

 Lily's Uncle Price flew in to visit Lily for the first time and gave her that precious dress!

 She must love her Uncle Price because she wanted to swing with him!  This is one of her favorite things!

 Happy happy girl!

 This momma loves her family!  Smooshing Daddy is fun!

Walking into Lurie for pre-surgery appt.

Lily decided she did not want to go to her appointment and walked down the hall to find toys.

 And....she found them. ;)  I like her determination!

We've only had our baby girl for 2 months.  I feel like we've known her since birth.  What gives me peace is knowing and trusting in God.  And He gave her to us.  It was His plan.  I know that.  And again...I will share the story on that soon.  Besides, I have 3 hours to do that on Tuesday!  But also...I know what a fighter my Lily is.  She's a surviver.  She's determined.  She's wickedly smart!  And... she loves us and I know she knows...we love her.  All of that will get us all through.

I leave you with yet another cute picture.  Lily loves hats!  Here she is with her cousin Ollie.  Both raising the cuteness scale to a whole new level!

I'll be posting as much as possible at the hospital to keep you up to date.

Love to you all.  D&N