Thursday, May 30, 2013

Yes It's True, I Blogged

Emily and Becca and I went to dinner tonight.
After tonight Em won't be invited again for a long time - the terrible two's are out in full form.
As the hostess was seating us she asked, "Should I get some crayons for your little girl or will she eat them?"
"She won't eat them but you don't need to give her any.  She'll just throw them on the floor."

Whenever I go to the bank the teller asks me if Emily wants a sucker and I smile and shake my head no.

It's really easy for me to accept and maybe even respect Emily's limitations when it comes to eating.
She doesn't put food in her mouth, and right now I don't expect her to.

With that said, help me understand something - give me some insight on my next scenario.

I've noticed recently that when someone says hello to Emily, no matter who it is or where we are my automatic response is to look at Emily and say, "Can you say hi?"

And by doing that I give the person who said hello the expectation of a response, when I know full well that Emily won't respond.

Tonight I did it again.  Someone said hello and I looked at Em and asked "can you say hi?"
And then I kind of wanted to smack myself.
In a way I feel like I'm setting my girl up to fail by asking her that question.
No.  She can't say hi.
No. She won't say hi.
And in most cases, unless you're Aunt Becca or Grandpa and Grandma, she won't even wave  to you.

She's not even two - she doesn't know that I'm setting her up to fail -  but it's going to happen that someone will not get the response they want and think to themselves, "she's not a very friendly little girl."

When the truth is the exact opposite.

Em will have limitations: the quantity and severity of those limitations won't be known until she gets older.
I will do everything I can to help lessen the limitations and to focus on the amazing things Emily does so well.
But it should start now - with the next person who says hello to my sweet little lady.

What do I say then?
Just smile and say nothing?
Speak for Em and say hi to the person?

Am I over thinking this entire thing?

* * * * *

Our girl is full of happiness and joy and love for the world around her - she points now, to everything.
Tonight it was a stack of tires at Costco.
Over and over again she pointed to the tires, waiting until I said the word tire before she raised her finger and pointed again.

She loves the Little Einsteins and Minnie Mouse.
I can't wait to show you the quilt I've made Em - with loving help from both grandmas.
I dropped it off tonight at a quilt shop where someone is going to quilt hearts on the top for me.
We went for a walk along the river Monday night, before Daddy left to go out of town for the week, and all I had to cover Emily up with was the quilt top.
The minute she saw it she snuggled up to it and kept her hand firmly wrapped around a piece of the quilt for the hour we were walking.

My life is full of busyness and stress, but when Em comes and wants to snuggle, all of the other disappears for a few minutes and I remind myself of all that I'm blessed with...

...even if I have to go to desperate measures to entertain her.

(This?  The best $40.00 I've ever spent.  My girl LOVES this thing, and spent all afternoon playing contentedly inside.)




Friday, May 24, 2013

It's A Good Thing I Have My Daddy!



Hi World,

While Mommy works her life away I just hang out


Mommy says maybe next week she'll have time to write a real blog.

I hope you all have a good weekend! 

Love, Emily 

Monday, May 20, 2013

What Jason Sent Me





My poor husband...
He was probably worried about a matching outfit because I harassed him not too long ago about Em's clothes not matching.

He's a good daddy and Emily is a lucky girl.

Emily's cardiology appointment went well - incredibly well.
They don't need to see us back for at least 9 months, and then it will be to have an MRI of her heart.
Our girl has an intense fear of all things medically related and the sedation process was hard on her.
When Em was coming out of the sedation she panicked again and the only way I could settle her down was to pick her up and snuggle with her on the hospital bed.
Em's doctor wheeled both Em and her mommy through the hospital back to the recovery room, and everyone who saw us said, "aww."

Yesterday I tried to lay her on a changing table at church to change her diaper and she panicked - clung to me and would not let me change her diaper until I put her on the floor.

My sweet girl has been through far too much in her life.

* * *

Let's keep a prayer in our hearts for all of those affected by the terrible storms.



Thursday, May 16, 2013

A Day Off Would Be Welcomed

Starting at 8:00 this morning, until after 9:00 tonight, my cell phone rang 38 times.
I counted.
36 of those calls were work related.

"Noelle, how much is this plant?"
"Noelle, can you order this?"
"Noelle, when will the order you placed be in?"
"Noelle, do we have this item in stock?"
"Noelle, can you call this customer back and answer some questions she has?"
"Noelle, can you tell me if this invoice has been paid?"
"Noelle, what's the name of the customer who..."

The other two calls?
Jason - who is out of town - was calling to check in, and my sister ... she was returning a missed call.

My life is out of control - and I'm quickly losing my ability to cope.

I went to the dentist the other day for the first time since before Em was born, and after doing his exam the dentist sat next to me and said, "Dear, the muscles in your mouth and neck, and even your teeth, would suggest that you've been under some stress.  What can I do to help?"

And then for the next few minutes my dentist turned counselor asked me questions about my life, and when all was said and done he said, "We need to do whatever it takes to keep Mommy from going down, because if Mommy goes down, who will take care of your girl?"

* * *

My little girl is at a stage in her life where she doesn't like to be by herself - even if she's just across the room from me.
It's like something spooked her and she just needs to be reassured that I'm there.
She'll walk over to where I'm working at my desk, and just stand next to me with her hand on my knee.
If I'm sitting on the floor she will quit whatever she's doing to come and sit in my lap.
She sits right next to me when we're on the couch, and today at work she crawled up into my lap and was content to lay there while I worked on the computer.

We've always rocked her for a little bit at night before we put her in bed, but the last few weeks that hasn't worked.
She wants to be snuggled right next to me or Jason until she falls asleep, and it's then that I usually move her into her bed.
She lasts several hours in bed but recently Emily wakes up sometime in the early hours of the morning crying.
Nothing I do will stop her from crying until I bring her to bed with me, and then almost immediately she sleeps.

I said something about this on Sunday and got a look from one of my brother's that would suggest I'm committing a great parenting sin.
I probably am.
But letting her cry it out would result in a major mess of the vomit variety.
And my ability to cope is greatly hindered by lack of sleep.
Tonight she didn't even make it to her bed.  She would NOT go to sleep - she fought it with everything she had, and after two hours of trying, I plopped her on Jason's side of the bed, where she is now sleeping soundly.

I can't help but wonder if her need to be close is enhanced by her daddy being gone so much.

* * *

A customer I haven't seen in a long time came into the office the other day.

"Hi!  Is this Emily?  When are you having another baby?" were the three things he said to me in that order.

I wanted to slug him but instead I just said, "Not today," and told him that we were more worried about when we would be having another open heart surgery.

"Oh, she needs another one?"

And after all of that he had the nerve to argue with me about heart procedures.  When I mentioned that Em would be having an echocardiogram he said rather smugly, "Most normal people call those EKGs."

"Most normal people know that an EKG is not the same thing as an echocardiogram," I said back to him before I walked away.

I need a vacation.

* * *

Send good thoughts my way would you?
In just a few short hours I'm taking my sweet girl to the hospital where they will put an IV in her arm, and pump her full of medicine to make her sleep so that they can then spend an hour looking at her heart.
Oh how I'm hoping for good news - I can't take another heart surgery any time soon.
We've got a trip planned to take our girl to Disneyland in September, and I don't want anything messing with that.







Monday, May 13, 2013

Happy Mother's Day


"Happy Mother's Day Mom, I broke some bones."
That's what our nieces should have said this weekend.
Good grief.

Jason's sweet niece was hiking with some friends this weekend and slipped and fell 25 feet.
She cracked her pelvis and broke her arm - she had surgery on her arm yesterday, and was in a lot of pain tonight when we visited her in the hospital.

She'll be in a wheelchair for the next six weeks and she's now trying to reshape her plans for the summer.

My little nieces, who are both eight, crashed on their scooters, trying to protect their younger cousin/sister.
Gabi broke her arm, and both Gabi and Kate have road rash.

I asked if I could take their picture and Kate said, "You can't put it on the Internet."

I thought about it for a minute and told them that I would be happy to pay them for the rights to use their picture, and they are still trying to come up with what they think their picture is worth, but they gave me permission to post it in the meantime.


Gabi hates the attention, while Kate thrives on it just a little bit.
They have road rash in other spots too...poor little ladies.

Grandpa gave Gabi several stories she could tell her classmates, yet the story Gabi is going to use is simply, "I got in a fight with my scooter and the scooter won."

And in my little world...
Being Emily's mommy is the best Mother's Day gift I could ever hope to have.


Thursday, May 9, 2013

A Quick Hello


Thank you to all of you who have emailed asking about my sister.
Life inside the hospital is steady and calm, while life outside the hospital is beyond insane.
This week and next are typically our two busiest weeks of the year at work, and although I text my sister regularly, and managed to find a minute last night to visit her in the hospital, I haven't had even two minutes to update those of you who care and are concerned...until now.



The nurses in the NICU are ever amazed at how well baby Winn is doing, and my sister is being released from the hospital sometime this afternoon.
I'll update from time to time but if you'd like you can read my sister's blog for more regular updates:
www.tiffplatt.blogspot.com

Emily is healthy again, and I'm praying it will be for longer than just a week.
I can always tell when she's over an illness completely because she tolerates her feeds without any problem.

I got a phone call today from the cardiologist's office.
New week, Thursday morning bright and early, Emily and I will check into the hospital where they will sedate my little lady and do an echo cardiogram.
It's been 6 months and they want to make sure that her leaking pulmonary valve hasn't cause her left ventricle to become too enlarged.
The results of this echo will likely give us a time frame for when Em's next open heart surgery will be.

I've said it before...I wish all of you could spend just one hour in my little one's presence.
The pure love that radiates from her ... it calms the most troubled of hearts.




Thursday, May 2, 2013

This and That


Tonight as I was paying for something the cashier said, "I love your ring!  It's beautiful!"

I was wearing this:  


"Would you like to hear a secret?" I asked her.

"It cost me $1.99 - I got it on some website for 90% off or something crazy like that."

She couldn't believe it, and told me again how beautiful she thought it was.

I had actually ordered more than one ring because I wasn't sure what size to get.

I pulled another ring out of my bag and handed it to the girl and said, "Have this one.  I bought extra."

She squealed and told me that I had made her night.

* * * * *

I had my back to Emily while I was picking out some strawberries at the grocery store and as a couple walked by our cart I heard the husband say to his wife, "She is one cute kid!"

That made my night.

* * * * *

I'm currently washing a load of laundry that until recently had been clean and folded neatly, sitting in the basket until I had two minutes to put it away.

Sadly, our girl threw up all over the clean clothes.

I've always said that Emily's gut hates her.
There's a good chance that in the near future I will say that I hate Emily's gut.

My sweet girl is so miserable.
My mom took one look at her this afternoon and almost started to cry.
"Noelle, her eyes look so sad!  I need to know what's going on with our little Emily."

This was how I found her yesterday afternoon...she was nearly asleep:



* * * * *

My sister Tiffany is 29 weeks pregnant with a little boy.
She was admitted into the hospital yesterday for what we thought was just an overnight stay.
I went with her yesterday morning to an appointment she had with the perinatologist and it was determined that Tiff has pre-eclampsia.

This morning the doctor told Tiffany that normal protein levels are around 500.
Dangerous for the mom protein levels are 5000.
Tiff's protein level is over 6000.

The doctor told Tiffany this morning that she's to the point where her life is more in danger than her baby's would be if they deliver him now.
Sometime tomorrow or Saturday Tiff will have a c-section and bring her tiny little son into the world.
She and her husband were told to plan on their little guy staying in the NICU at least until his original due date.

Other than dealing with a constant migraine that comes because of her ridiculously high blood pressure, Tiffany is in good spirits.

If you're so inclined, I'm sure Tiffany would sincerely appreciate any prayers directed their way.

* * * * *

I'm going to go now and clear off a corner of my bed so that I can sleep until my little lady wakes up crying.
Bless her heart - she's probably just as exhausted as I am!



Wednesday, May 1, 2013


One night before Jason left for his 8 day backpacking trip he was doing some 'research' on his computer.

"I can't decide on a backpack," he told me.

I looked over at him and he had this page open on his laptop:


They varied in size but Jason's main concern was the color.

"I don't want to look too girly' he told me.

After he spent a few more minutes looking at the packs I asked him if I were going to have to hide his debit card.

"Dear, I have every one of these packs."

"Of course you do," I said.

My husband is a gear nut!

(Thankfully he didn't pay for the packs - just one of the benefits of his job.)

* * *

Our little lady is sick.
Again.

Woe is all of us.

Em needs a break from all things sick, and I just want one night where I get more than one hour of uninterrupted sleep.

It's probably too much to ask!