Tuesday, May 28, 2013

Week 1- CHECK!

Well, we can check the first week off the books!


For those who have done this- you know the first 7 days is the hardest... I have to say... It has gone better than I expected.  Now, not saying it's been a cake walk.  BUT, it hasn't been as bad/hard as her first surgery.  She seems to have bounced back quicker, and accepted the fact that she can't walk.  (Sad)  Also- it may be because she isn't in that dreadful cast.
Days like yesterday, I was almost hoping for a cast.  Lucy has now become Houdini, and flips her legs right out of the pillow.  She says, 'Mommy!  Feet!  Toes!'  I have woken up two mornings already to find Lucy sleeping peacefully... as her pillow is also sleeping peacefully... on the floor next to her.

I wrote our surgeon and he doesn't seem concerned at all... I even sent her a picture of her pulling her moves and he wrote back 'all is well.'   I think I will feel better after our x-ray next Wed to see things healing as they should.

I fully expected for Lucy to be sleeping in my bed.  I expected her to scream most of the day like she did before with her first surgery.  I don't think I could be more wrong.  She wakes up after a 12 hour sleep and still seems to feel good.  She's on ibuprofen and tylenol only- each 2x a day.  I also think that I know what I am doing more this time with her, so it seems to be going better than expected...

We have already been shopping, of course!  We went to Target, and the little lady got so much attention.  A nice stranger in line bought her a bag of Doritos, we went to Petco and bought a fish, and we hit the dollar store to get some little things to play with.  Good times. :)  Unfortunately, 2 out of the 3 fish we got have went to fishy heaven.  The one we still have, 'Nemo' isn't too far behind, I bet.  We are hoping he sticks around longer than his friends did!

Life for momma has been hard and busy.  I keep on top of keeping Lucy busy at all times.  We take breaks to watch a show now and then, but I won't let her watch tv all day.  It drives me crazy... There is only so much Peter Rabbit and Bubble Guppies I can take...We play the Ipad, we go on a walk next door to see our neighbor's boat, we play in the living room, we go on a drive... anything to make the day go by.

I have already decided that Dr. Segal and I are going to have a 'Karen style discussion' next week about the length of time for this pillow.  He said he is going out of town at the 4 week mark, but I am going to tell him that we want to see him the day before he leaves for a 4 week x-ray and hopefully to get this pillow OFF!  He isn't the type to be pursuaded easily, but I am going to push til I can't push anymore!  I honestly can't keep this thing on her much longer.  She even tried to stand up in her highchair today!  I guess it's a good thing that she feels so good, but I am worried she is going to do something and hurt herself and compromise this bone!

Here are a few pics of our last week, and her scar.  :-(  Breaks my heart to see this on my baby.  The bruising is better than it was, but still... she's only 2 years old.  I hope to never see anything like this on her ever again.

Have a great week, and BRING ON JUNE!

:-( BREAKS my heart.

Happy Birthday to our new fish

Birthday party!

Playing with her dollhouse at her newly modified table!  (Thanks DAD!)

We have chocolate ice cream like all the time now.  Thank goodness she's not in a cast!

Play doh and farm!

Her cousins came over to hang out and play!

They had a tea party for Lucy

Our wonderful friends Heather and Kenzie sent Lucy some art supplies!

We walk over every single day to our neighbor's house to see their boat.  Lucy LOVES boats, the ocean, fish... I think she thinks the bubble guppies live in here...

My husband's co-workers built a wheelchair ramp for our front door!  So sweet

Yes.  She is spoiled.  No, I don't care.  Lucy is perfect and can have whatever she wants.

After rolling all over like a wild woman

Dora's playhouse!

Dora and Nemo!

Hannah is Lucy's BFF!

Thursday, May 23, 2013


Ah, there truly is no place like home.
But goodness... taking care of a 4 month old and an immobile 2 year old recovering from surgery is no joke!
My husband is in the car business, and works an insane amount of hours.  So- pretty much that leaves us 3 ladies to fend for ourselves 6 days a week, about 11 hours a day!  Thank goodness for our friends and family...
When Lucy had her open reduction surgery last year, she couldn't sleep because of the muscle spasms.  It was awful.  She would jump and wake herself up about 5 times a night...screaming... for close to 2 weeks.  I anticipated her doing the same, and I gave in to the idea of her sleeping with me this time.
Well, no need for that!  She told me she wanted to go in 'Lucy's bed' and she slept like a baby.
I set my alarm for 1 am to get up and give her the pain meds.  I don't want her pain to get away from us, making it harder to get back under control.  I was so worried I would miss my alarm, that I naturally woke up at midnight and stayed awake til 1 am!  She was such a princess in the night.  I told her, 'baby, it's mommy.  It's time for your candy.'  (That's what we call medicine)  She said, 'ok mommy.'  Took it, then went back to bed.  ANGEL.
This morning, Lily wakes at 5:30, and I am so darn excited to get up and feed her to spend my one on one time with this beautiful baby!
I woke Lucy up at 7, again- trying to stay on top of the every 6 hour pain meds... I gave her some food and her meds.
About an hour later, she got really pale and said, 'tummy.'  She then projectile puked all over herself, my legs and shoes, our rug and floor.  POOR BABY.  She did that yesterday in the car, but I thought it was motion sickness.  Nope. It's her pain meds.  She didn't even want to be around her sister or dad.  Just mommy.
I wrote Dr. S and told him, and he said if she is doing well, she can just have motrin and tylenol alternated.  Ever since that nasty Lortab got out of her system, her coloring is better, she's eating, drinking and in a good mood.  BYE BYE pain meds!  I can't believe 4 days ago, this girl had her pelvis basically broken, and here she is... amazing me yet again- every minute of the day.
Now, I'm not saying I haven't had breakdowns.  I'm not saying it's easy.  What I am saying is that I am thankful that the worry about her surgery, recovery and future is MY cross to bear, and not hers.
She is frustrated.  She says 'DOWN!' and 'OUT!' a few times a day.  When I go to tighten the velcro on the pillow, she says, 'all done!', and it kills me to have to say, 'no baby, not yet.'

I tell myself that this isn't forever.  This is hopefully her last surgery.  This too shall pass.

So- this pillow thing.  Honestly, it reminds me of the brace she had in a way.  It's super flimsy, doesn't stay on worth a crap, and I am constantly having to tighten the straps and make sure she isn't pushing it off.  I told her that the Bubble Guppies said she has to keep her pillow on... That's the rules... :)
Then again, it's WAY better than the spica cast!  I hate those dang casts and pray to God never to see one again.  This pillow is like a gift from heaven compared to the cast.

Today we just played at home, rested on the couch and watched TV.  The days will go by a lot easier and faster once she feels up to going to a movie or the aquarium.

It's almost like second nature to me this time.  Lifting Lucy, not being able to take my eyes off her for a second, sponge baths, hair washing in the sink, using pillows and contraptions to make things easier.  It sucks that I am pretty good at this.  I wish I never knew what it's like to have a child that has to be confined to a wheelchair or couch.  BUT- again... this isn't forever!

She was unsure of the hair washing in the sink, until I showed her that mommy does it, too.  Yep.  I climbed up on the counter and laid on my back, over the sink.  I about died getting down, but Lucy then wanted to try it because I did.  Hey- whatever works!

That pretty much sums up our life at home right now... I know there is more I wanted to type, but I am so exhausted that I can't think anymore!
Moral of this story is this.  Lucy is amazing.  This girl never seems to let anything bring her down.  I can't even bring myself to feel sorry for myself in all this- because look at her!  She's perfect and such a brave little monkey.  I am honored to be her mom.  <3

Off to bed.

(33 more days and counting)

Sister tried to cheer her up when she was sick...

Not feeling well :-(  Stinkin' pain meds.

'I am not wisten-ing'

Our old computer table turned Lucy's table by lowering it!

Once the pain meds were thrown up, and she had a nap, she woke and said 'TAY-TOS and CHEESE!'
So what did I do?  Made potatos and cheese, of course.

Grandma came to visit today

'Baby wears a peeee-low!'

You know she can't go for long without a hat to wear


Magnet dress up dolls from our friend Carla!


Countdown to pillow off chain!

Taking off the chain for the day!

Being silly after bath time with mama! :)  Excuse my gorgeous looks, I have no time for make-up


This is how we have to hold her... like a baby.  A big 34 lb baby!

I still prop her feet up with a rolled blanket to prevent pressure sores 
(Cast mentality!)

Tuesday, May 21, 2013

The big surgery

The worst is over.
Here we are, almost 24 hours post surgery... what a crazy 24 hours it's been.
Currently, my little muffin is resting and watching Jungle Book on tv, (refusing to nap- pretty normal) and my big muffin (daddy) is playing on the iPad reading about football... I thought I would do my post as it's fresh in my mind!

So, Lucy's surgery yesterday wasn't until 2:30.  After having the 'case of the M and M's' we decided it was best not to give her anything to eat.  (After hearing a story of a child aspirating, we weren't going to take chances.)  Lucy got to have a popsicle and juice.  That's it. :-(
Figures, the day we are early, Dr. Segal and staff are behind.  We requested for Lucy to have 'pre meds' so she would be a tad bit loopy and happy, so she would go with the nurses without screaming and crying for mommy.
Well, that backfired.
She was loopy for about a half hour.  The anesthesiologist was late.  The meds wore off and my little angel Lucy turned into tantrum throwing-devil Lucy!  It was awful.  Long story short, they took her away from me.  Screaming and thrashing.  I felt so helpless.  It took every fiber of my being not to chase them down the hallway and get her back.
After about 1 hour and 20 mins, Dr. Segal comes out.  We are the only ones in the waiting room- and it feels like he is walking the green mile!  SLOW!  I am like 'hurry up!!!!!'
He sits down and tells us that her surgery went well, and shows us pictures of the bone he wedged into her pelvis.  OUCH.
Her hip socket looks beautiful.  PERFECTION!  Just like we knew it would be!  Dr. Segal said we will see him again for a 2 week x-ray, then a 6 week x-ray.  WAIT.  WHAT!?  What happened to this 4 week thing?  He is going to be out of town at the 4 week mark, so I told him that I am going to make an appt for 5 weeks.  He said, 'ok, you win. 5 weeks.'  So, 5 weeks it will be.
We wait about another 20 mins before we are allowed to see her.
Again, the longest walk of my freaking life.  We turn the corner and it hit me.  Surgery is over.  There she was.  A little 32 lb person that holds my heart in her hands.  This little person that gives me the inspiration and courage to be the best mother I can be.  MY WORLD.
She was laying there with a mask on.  I could smell the strawberry scented oxygen, just like she had last year.  It made me nauseous and so thankful at the same time.  Weird, and hard to explain.  I was so darn happy to see her- knowing that she is ok, that again- the world could have collapsed around me, and I wouldn't have even noticed.  I have been so strong up to that point, that I just lost it.  I layed my head next to hers and sobbed.  All the crying that I didn't allow myself to do up until now- it all came out.  Thank you GOD for keeping this little girl safe.
After that- things got rough.  Lucy woke up, and the first thing she said is 'ow mommy, I'm stuck! OUT OUT OUT!'  She started thrashing around and screaming.  IT WAS AWFUL.  She was pulling at her pillow and saying NO NO!  Talk about ripping your heart out.  The nurse gave her some additional meds which settled her down.
To me, that's the worst part.  Kids do eventually accept this.  It sucks, but they do.  That minute where they realize they are stuck, and the panic sets in.  That's the worst part of this.
But that's over.
We get to her room and honestly- things couldn't be going smoother at this point.
Her caudal (similar to an epidural but only lasts about 8 hours) has worn off,  and up until a few hours ago, she was comfortable on IV anti inflammatories, antibiotics and valium.  Valium is for muscle spasms.
No morphine needed!
She woke at around midnight and we had a full conversation about Deer, the Lion King and all kinds of cool stuff. :)  She drank apple juice and had some crackers.
She fell back asleep and woke at around 5 am.
Around 7 I ordered her some breakfast, which she ate well!  The nurses even took her off IV fluids since she is downing apple juice like it's going out of style.
She's been off and on resting all day.
Around 11 am she said, 'Mommy, leg hurt.'
At that minute I called the nurse and requested her pain meds.  They are oral pain meds.  Once the pain is managed, it should be pretty smooth sailing.  You just don't want to let the pain get too far out of control.
OK, so this pillow.
It's been cut down a lot (thank you Dr. S) and it seems pretty flimsy in my opinion.  But hey- I am not a surgeon nor care to be one, so I will trust Dr. Segal and his decisions. Thank GOD it's not a cast.  I hate those stupid casts and I plan on never seeing one again.  SO LONG, FAREWELL.
It's super light, like a sponge.  The velcro straps around her knees.  She's been kicking her toes all day long.  She's able to sit up at a 90 degree angle, and she can move, unlike the stupid cast.  This pillow and I are going to do just fine.  I have already changed her diaper a ton of times.  You have to roll her on her right side (the good side) and slide the diaper underneath her.
I haven't picked her up yet, but we will once we get a wheelchair to take her for a walk in.
She keeps getting so sweaty on her neck from laying in bed.... I keep wetting washcloths and cooling her down...
So- basically what they did to her- they cut her pelvis.  Yep, you heard it.  They made a cut in her pelvis, and tilted it down.  Then they added a chunk wedge of a cadaver bone in there to make it bigger and wider.  The reason they had to do this is because since her hip was dislocated for so long, it actually rubbed a 'false socket' on the top of her pelvis trying to create its own socket.  So that had to be fixed.  (Again, let's not get started on why/how her hip was dislocated for so long...)  Anyways...
All of that is hopefully behind us.
Brighter days are ahead.  Or some pretty crappy ones.  Whatever it is- WE WILL GET THROUGH THIS!  The worst is over.
Once this little babe was back in my arms, I knew that if I have to do stand up comedy to keep her entertained for the next 5 weeks, so be it.  I will stay up all night, all day, do ANYTHING.... anything at all to keep her happy and comfortable.  I know it's going to be hard for her... but with TEAM LUCY (aka Mommy, Daddy, Lucy and Lily) there is pretty much nothing that can stand in our way.
Let's just hope her bone accepts its new position and grows perfectly.

Thank you God for all of our blessings.  Our friends and family who texted me, called, e-mailed, messaged- whatever!  We are so lucky to have such an amazing support system.  Someone told me their mom's church is in Ireland, and Lucy was on their prayer list!  Amazing.
Lucy is living proof right now that God answers prayers!  She has had such little pain so far, that I am almost shocked.  Yes, it could get worse, but this has sure made our hospital stay a lot easier.
I am so thankful today for everything.

More to come!


Daddy went home last night (no room for him to sleep!) but came back with her beach ball!

Pancakes and an Ipad.

The pillow.  It looks big in the picture but it's not that bad

Dora.  Always.

Our hero.
Dr. Segal.  He came in wearing this hat!  HAHA!

When we were leaving recovery (after her flip out)

TA DA!  Perfectly remodeled hip socket.  Dr. S's drawing at the bottom showing what they did.
The hook shaped white area is the cadaver bone

Checking into pre-op.  Lucy said 'I a Dr. Segal!'

Look at those long legs.  No clue where she gets it from.

Getting out some energy...

UGH.  I miss this already.  But the good news is... there will be SO much more of this to come.
And it will happen in good time.  All with healthy hips.


Wednesday, May 15, 2013

Everything happens for a reason

Well, I really didn't think I would be here, on May 16... at my house typing this.
Lucy didn't have surgery yesterday.  Why?!  An M & M of course!

We show up to Phoenix Children's Hospital to check in at 1.  Her surgery was booked for 3.
It was a long, quiet drive there.  We turn onto the 51 freeway and can see the big hospital in the distance.  My heart was pounding... Lucy was happily kicking her legs and watching Bubble Guppies. Ugh.  I actually did okay until we checked in, and the nurse put her bracelet on.  It was official.  That would be the same bracelet she would be wearing while they did her surgery.  I lost it.  Holding her and crying my eyes out as we go up to the 4th floor.

We get called back to pre-op right away.  Never have things gone this fast.  By 1:30 we were in a room and nurses were checking Lucy's vitals.  The nurse asked me a few questions about what Lucy ate and then replied with, 'we made need to cancel because they want to start now.'  My response: 'well, that's not my problem they are wanting to do this early, you should have called me!'  The anesthesiologist came in (same guy we have had before) and explained why.

Lucy had some applesauce and a smoothie in the morning, before 9 am.  She only had clear liquids up until 12 noon.  (All ok.)  A friend of ours sent Lucy an M & M machine for her 'BIG SISTER' present when Lily was born.  Funny thing is she texted to wish us good luck, and Aaron said 'Your M & M's may save us!' since Lucy LOVES them!  As we were getting ready to leave, I turned my head for one minute, and the little stinker had her finger in there grabbing and chowing down on an M & M.  Aka 'mem mem mem.'
I told the nurse this, and the anesthesiologist said that even though it was just one, it's a hard candy, and God forbid she aspirates--- wouldn't be good.  This man has 40 years under his belt of doing this job, so I am no way chancing this!

Dr. Segal came in.  I shook my head and said, 'I am sorry!'  He said, 'it's okay!'  It just wasn't meant to be today!
He sat down on the bed, and talked with us for awhile.  Lucy was running around doing her sticker book, and having a blast. (shocking)
I told Dr. Segal how much we appreciate the time he takes to answer e-mails, and for him getting Lucy in this fast.  He told us how answering parent's e-mails take him about an extra hour a day to do, it's worth it.  He said parents need that.  He is so right.  Something about Dr. S that makes us feel so comfortable and calm.  I told him that he holds my 'world' in his hands, and he simply replied, 'I know this.'

After our chat, I said to Lucy, 'home?'  She grabbed her shoes and said 'YAH!'
I said, 'say bye bye to Dr. Segal' and she said 'bye bye Segal.'  And strolled on out... After she gave him a hug and pulled his surgery mask to where he was almost choking.

My husband said, 'the last 2 times I have been to this hospital (last time was for her x-ray) I left shaking my head'... I told him in the car something I wanted to say.
I told him that the first time we went through surgery, I felt calm.  I felt like it was right.

Monday, May 6, 2013

Entertainment Extraordinaire

Well- 1 week away from surgery day.  YIKES!
Yes, I am freaking out, but trying to keep it together so I can take care of these 2 beauties of mine.

This surgery is our 2nd round of hip surgeries... I remember her first surgery like it was yesterday... I remember how badly I wanted to get her out of the hospital.  I remember her waking up for about a week with muscle spasms... jumping up screaming in the night.  I remember the look on her face when she woke up and was stuck in a cast.  She looked at me with fear in her eyes... total panic, and screamed and screamed until she threw up.  It was awful.

Am I expecting this again?  Yep.

The point to this is that I feel a little better knowing what to expect.  I know the first 10 days is going to be difficult aka a living hell.  I know I will wonder every day how we are going to make it through.  I know before bed every night I will cry and cry, and pray to God that her hip is healing... I know all this because I have been there before.

Today on the way home from her gym class, I caught myself looking in my rear view mirror at each stop light.  I tilted it down so I could see her perfect little face... smiling once in awhile and giggling when Dora did something funny.  (Yes, we have a tv in the car!)  She caught me looking at her and got the biggest smile on her face, and said, 'MOMMY! LOVE YOU!'  I just thought, how in the world am I going to do this?  How am I going to feel when that smile is taken off her face, and she wakes up with the look of pain and fear?  I am terrified.  Terrified of that first dreaded 10 days.

I am really trying to focus, and get prepared.  I didn't quite know how to prepare last time, and actually this time- I don't either!  We don't know if she going to have a cast, or an abduction pillow.  'Pillow' sounds like a half way decent option, until you see that its a huge, thick piece of foam strapped to her legs to keep her immobile.  Honestly, both options suck in my opinion, but at least with this pillow thing (and I use the term pillow very loosely) she can sit up on her bottom and play.  She won't have to be propped up with blankets and pillows.  AND- it's not hot for her.  I also have to admit, I am (unfortunately) a spica cast pro.  I can waterproof a cast and maneuver it around like nobody's business... 16 weeks of that will do that to ya... :)

I had a few hours alone yesterday, and decided to hit up our local craft store, Hobby Lobby, to find things for Lucy and I to do together while she is immobile.  Most of these were super cheap!  (Don't let the price tags on them fool you, they were 30-50% off that price.)  It's going to be a whole new ballgame entertaining a child that can communicate and has her own ideas... and knows what she is missing by not walking.  I am hiding all of these toys/crafts and going to bring 1 or 2 out each day to keep us busy.

OH WAIT!  I forgot to post this, but Dr. Segal told us that it may not be 6 weeks.  It could be FOUR!  SAY WHAT!?!?  We will re-evaluate after 4 weeks and pray that we get that lucky.  Four weeks is 28 days!  3 of them will be in the hospital... the following 7 will be hell so those don't count when you first get home... then the last week is the countdown... SO- really 2 weeks that we need to worry about.  (Yes, I am getting my hopes up, and I am CLAIMING this for Lucy.)  FOUR WEEKS FOUR WEEKS!  If it's 6, it's 6, but I feel like God is going to cut us some slack here, since we did a 2 week 'for fun' cast time the first time.  (Her hip re dislocated in the cast after surgery and we did close to 2 weeks for nothing!)  This is hopefully my good juju coming back... :)

Here are pics of what we have so far... There are more things coming also.  Total for all the crafts and supplies (including scooter board) were about $150... not too bad.  Sanity has no price tag. :-)
Hope some of these ideas help!

This is amazing. It should be here Thursday. I ordered it from Flaghouse. It's an extra long scooter board that she can lay on her tummy and zip around. (hopefully) My friend and fellow mom of 2 girls, Lindsay at Two Bobbins Later, is going to make a padded vinyl covering that's wipeable for it.  She's also going to make 2 pillowcases that velcro on.  She's uber talented, so this is going to look amazing.  AND- I am going to donate it to someone after we are done.  I have a weird thing with keeping anything that reminds me of this.  I got rid of all of Lucy's clothes that she wore during her cast last year.  Every single thing that reminded me of it... (sigh)

A lap tray.  This will work with a cast or pillow.  Perfect for a snack or a game...

A must!  PAINT!  We love to paint, so this will be something Lucy will enjoy...

We are going to make her and Lily matching shirts!  We got iron on transfers, and fabric markers and we are going to go to town!  I will let her decorate them however she chooses... Lucy will LOVE to see sister wearing something she has made...

Lucy is a HAT and SUNGLASSES freak!  We rarely go anywhere without her having to grab a hat... so we will decorate these with glitter and stickers...

Pom Poms and Feathers for sensory bins... I am going to do rice and beans also

These were kinda cute... Masks on a stick... Her cousins that will visit will have fun making these with her

Since Lucy is into accessories (LOL) she can decorate her very own purse. There are 3 in the pack

Stamps and ink pads... as long as she doesn't stamp her sister, we will be ok

So cute. We are going to do these for Grandmas for Mother's Day also!
We bought glitter to put inside the water.
ONLY .87 cents!

Re-usable coloring pages that turn colors when you add water. Pretty neat.

She will love this! Super good for fine motor skills also.

This was cheap, so we got it!  Looks fun...

This seemed to be a must... IF she isn't sleeping in bed with me, that is... 

Lucy LOVES LOVES LOVES the Nick Jr show, BUBBLE GUPPIES.   So, these will be her friends to sleep with for awhile to make her smile

Thomas the train re-usable ice pack.  She has no clue who Thomas the train is... She thinks its Chugginton, her other fave show, so I didn't tell her any different.  She touches it and says, 'I cold!'

Gift box from Grandma!  Pumbaa (from the Lion King) stuffed toy, Chuggington carry case and trains, Beauty and the beast figurines, matching games, puzzles...

Nick Jr's website has TONS of free printables!  This is for when she is DONE! YAY!
Also, there are TONS of free games, tv episodes and cool stuff!  It's a super website...

Another FREE printable. Matching game of Yo Gabba Gabba

FREE printable crown

FREE printable coloring pages

Free printable

Just a little quote that gets me through the day...

New Ipad cover.  It actually has a stand so we don't have to prop it up... She officially has her own play list of music too! (Don't judge)  :-)  We bought her headphones too, but those aren't here yet.


These two are the reason for living!
Thank you God for them and my wonderful family.  Couldn't make it without them. :)