Thursday, May 31, 2012

I'm So Grateful


That my sweet girl's eyes have gone from sad and scared:


To this:


What a difference time makes.

Wednesday, May 30, 2012

Okay...Okay...


The boxes on the porch did not contain anything exciting...
...unless you're Jason.
He got a bunch of work stuff and I got a bunch of Emily stuff...
...formula, bags for her feeding pump, syringes, etc. etc.
I should probably redefine what exciting is, as shipments from home health care are on the monthly calendar for eternity.

I'll satisfy your curiosity though, and give you a sneak peek into the changes I made with my bedroom.
I had to order the quilt and it's going to take forever to arrive.
And the bedside tables are currently being painted.
I expect a text any time telling me they are done.


The yellow pillow and the one with the blue flower are just a sample of the pillows I'm going to use and the quilted piece of material is actually one of the pillow shams, but the quilt will look the same.

(No matter how I tried, I could not totally fall in love with the other bedding.  This bedding is much more 'me'.)

There.
Does that satisfy your curiosity for a little while longer?

My sister and I have an arrangement.
I tell her the things she needs to buy that she can't live without, and she feeds me.

As I told her last night of the latest 'you can't live without this' I realized that maybe you need to know the things you can't live without as well.
Is this true?

This is why you have me.
To make your life better.

Starting ... sometime ... I am going to write about the things you need in your life to make it better.

You can thank me later.
And feeding me is optional.



Tuesday, May 29, 2012

I Don't Get It


Anyone care to tell me what the UPS driver was trying to accomplish?


Sunday, May 27, 2012

I Think I'll Keep Her


Well rats.
I accidentally deleted my last post.

Maybe it was meant to be.

Here's a picture instead.
I'm pretty sure you will like it.


Happy Memorial Day.

Thursday, May 24, 2012

A Story About A Head



Once upon a time Emily was born with a perfectly round head.


(the first time I got to hold her...when she was three days old)

As far as her head goes, it was all downhill from birth.

She spent so much time on her back, that happens when you have three open heart surgeries and major gut issues, that her head didn't stand a chance.

Poor little head.



One day Emily's mommy and daddy said, "We can't leave our poor girl like this forever."





Thankfully the insurance company agreed and one extremely expensive hat was ordered.
Emily had her head measured by a laser, and thought about starting a new fashion trend.









...and although a cuter girl in a helmet simply doesn't exist...



...Miss Emily is grateful the helmet stage is now behind her...
...except for when she falls over and then she looks at her mommy with a face that says 'What the heck just happened to me?'


The end.

Wednesday, May 23, 2012

What It Is

8:00-9:00

-Emily wakes up
-mix formula for the day
-change out Emily's feeding bag, tube, etc
-do a load or two of laundry
-do dishes

9:00-9:30

-feed Em
-clean up whatever Em doesn't keep down

9:30-10:00

-give Em a bath
-change out gauze on Emily's feeding tube
-get Em dressed for the day

10:00-12:00

-if I'm lucky Em might take a nap
-sometimes I get a shower
-pack up Em's diaper bag
-give Emily her meds through her tube
-play time
-work with Em on physical therapy
-fold laundry

12:00

-feed Em

1:00-2:00

-run any errands I might need to, both for work and for me
-head to work

2:00-4:00

-try to work while Em plays
-feed Em

4:00-6:00

-take Em for a walk while she winds down
-Em finally takes a decent nap
-I have about an hour or two to get as much work done as I can

6:00-7:00

-feed Em
-pack up and head for home
-run any errands that I need to

7:00-8:00

-get Em ready for bed
-change feeding tube gauze
-play with Emily
-give meds through tube

8:00-9:00

-Em is finally ready for bed
-snuggle in the rocking chair until Em falls asleep
-a load of laundry if I'm lucky

9:00-midnight

-feed Emily
-mix more formula
-find something to eat for dinner
-pull out computer and work for two or three hours

Midnight

-start Em's overnight feed

And then, hopefully, I can crawl into bed.

* * * * *

Emily's occupational therapist, who helps with feeding issues, came today.
I've been telling her for a couple of weeks that Emily is getting worse, not better, when it comes to being interested in food.
The OT tried to feed Emily and after 15 minutes of fighting with Emily she looked at me and said, "She won't eat anything will she?"

And then she said to me, "What did you eat for dinner last night?"
I told her I ate a bowl of cereal.
"What do you have in your fridge that we can give Em?"
I haven't been grocery shopping in weeks.

"Does Emily sit at the table with you and Jason when you sit down for dinner at night?"
We don't sit down for dinner at night.
We rarely even eat at the same time.

"Are you increasing her feeds as fast as we've talked about?"
I'm going more slowly than the therapist would like...if I push Em too fast her tummy doesn't do too well.
"Until you can feed her a feed in 15 minutes she won't ever eat well."
"You need to find food that Emily gets excited about.  Make pasta and let her taste the sauce."
"You need to get to the point where you don't feed Emily at night.  She won't ever eat until you do that."

About 20 minutes after the OT left I got a phone call from another therapist.
"Noelle?  Emily's OT tells me that Emily needs help in other aspects of her development.  I'll be coming next week to do an evaluation and tell you where I think Emily is lacking, and what help she needs."

I hung up the phone and cried all the way to work.

* * * * *

A friend of mine has been pushing me for weeks to get together.
I finally found a time where I could fit it in and I texted her and told her I would leave work early and come and visit her.
She offered to feed me dinner and then sent me another text:

"Can you please bring that dessert my kids love?"

That dessert takes me three hours to make.
I haven't made it since Emily was born.

I waited a little while and texted my friend back and told her that I wouldn't be able to make it to dinner after all.


* * * * *

There's a line in the movie Return To Me that I love.
A girl who had a recent heart transplant found out that her new heart came from her boyfriend's deceased wife.
In tears she yells out to her friend, "What was God thinking???"

I sat on the floor of my sister's office today and cried and cried to my mom and asked her the same question.
"What was God thinking?  I can't do this.  I'm failing Emily."

Although it wasn't at all intentional, Em's OT made me feel like it was my fault entirely that Emily isn't eating.
On any given day I feel like I'm failing at most things in my life: my job, and my role as a wife and a friend.

I try really really really hard not to blame myself for Emily's not being able to eat.
I try to tell myself that Em will develop as she develops, and that no matter what, it will be okay.

But today ... today ... if you were to tell me Emily's heart defect and chromosomal deletion are my fault, I would believe it.

I'm grateful that every day isn't today.

* * * * *

Em and her bunny and I watched American Idol for a little while tonight.
Em loves American Idol almost as much as she loves Mickey Mouse Clubhouse.













Tuesday, May 22, 2012

Life According To Emily


Dear Everyone,

While Mommy is going crazy with work, I just wanted to say hi and tell you we're still here.
Daddy is out of town again for the week, and Mommy is juggling a lot right now.

Mommy brings me to work with her every day after I throw up and she lets me watch Mickey Mouse Clubhouse on her laptop.
Sometimes my cousins come and play with me.

My cousin Sami took a million pictures of me with Mommy's phone:


Poor Mommy has to pay a lot of bills, and she never has time to do it.
I think Mommy might pull her hair out.
(I'm really good at helping with that.)

I want to tell you a little secret.
Mommy changed her mind completely about her bedroom plans.
She wants to wait until everything is done to show you, but I think you will like it.

Mommy says I'm her favorite girl.
That makes me happy.

I hope you all have a finger you can chew on when life gets rough!

Lots of love,

Emily

Sunday, May 20, 2012

The Helmet Comes Off For Good On Thursday!


There are times in life when all a girl needs is sleep, no matter what she was doing 30 seconds earlier:






Thursday, May 17, 2012

Some Things Make Me Smile

If you drive down Main Street in the small town of my childhood, you'll see a little store nestled amongst trees that were full grown when I was just a girl.
Those trees house painted chandeliers that are for sell.
The store calls itself a boutique and lunch time bistro.
They offer a selection of four sandwiches, and then cupcakes and other goodies for dessert.
It's a very girly girl kind of place.

This afternoon I stopped next door to the boutique to pick up a picture I had printed and as I was getting back in my car I noticed three men sitting at one of the tables in front of the boutique.
They each had a drink and as far as I can tell, they were just passing the time talking.

These three men were manly men...
One of them was even wearing a bandanna around his head, and would have looked at home on a Harley.

I did a double take and would have taken a picture because they seemed so out of place, but one of the men watched me the whole time I was getting in my car and backing out.

I smiled as I drove away...
...both because of the scene and because maybe I'm still check-out-able.


Wednesday, May 16, 2012

Nothing Really


Note To Self:

If you want people to comment on your blog, ask a design question.
Thank you, all of you, for your suggestions.
You'll be the first to know when I make my final decisions.

* * * * *

My sweet girl didn't want me to put her down tonight and so we snuggled for an hour.
She wrapped her arm around my neck and buried her head into my shoulder.
She slept while I was lost in my thoughts.

I love that little girl of mine.
So so much.


It seems the sun shines in the same spot every time Emily is ready to take a nap.
I didn't want to move her because it would wake her up.
Do you like what I came up with?
Oh...and she's covered up with a shirt because I didn't have a blanket close.

* * * * *

I've got two hours worth of work left to do tonight...I better get at it.




Tuesday, May 15, 2012

I NEED You!


A few weeks ago a local Bo Peep rented one of our buildings at work.
(Bo Peep is how my niece Trouble says the word boutique & how I will say it forever more)

The Bo Peep hosted several crafters all selling their wares.

My sisters and I made our way across the parking lot several times to browse.

On the third and final day of the Bo Peep I noticed a bench sitting outside and I fell in love with it.
I ran over to look at it closely and determined that if, at the end of the day, no one else had purchased the bench, I would.

You would not believe the number of people who stopped to look at that bench.
And from across the parking lot where I was tied to a cash register, I sent telepathic thoughts:
"Step away from that bench."
"That will not look good at your house."
"You do not want that bench."

Etc. Etc.

Finally, with five minutes to spare before the Bo Peep closed, I jogged across the parking lot, ran into the barn and said, "I need that bench."

When I told Jason what I wanted to do with the bench he questioned me.
Not many people can see my vision until after a project is complete.

I wanted the bench at the end of our bed...a foot board of sorts.
Jason obliged and after looking at it for a few minutes he said, "Do you think maybe the lady could make us a headboard to match?"

My husband is brilliant.

It took me two days to track down the woman who made the bench, and when I told her what I wanted she gave me a very reasonable price and said "I'll see if I can find a head board to refinish."

Within just 6 hours she texted me and said, "I've found one.  Here's a picture of it."

Three days later the headboard was finished and I picked it up.



If you don't think it's lovely, I don't want to hear it.  
I happen to be in love with this furniture.

Here's my problem though, and this is where I need you.
What should I do with the lamp tables?

(Jason told me my table was a little cluttered and maybe I should clean it off before I took the picture.  I told him that all of you love me in spite of my clutter)

I can't leave the tables the same.  
Thoughts?
Ideas?

Change the green to red and leave the cream?
Paint them a darker color ... maybe brown?
Make them look exactly like the bench and headboard?

Tell me what to do and I'll do it!
Actually, I won't do it, I'll pay the furniture lady to do it.

One more thing.
We're thinking about this instead of what we have:


photo found here 

It would change the look from more country to modern, but I think I love it.

Do you think that you love it?

(This time if you don't love it, tell me)





Sunday, May 13, 2012

Glimpses

I walked with an older lady to her car yesterday.
She had purchased some plants and I carried them for her.
"I will have to see if I can move some things to make room for these," she said as she opened her trunk.
She had two cases of vanilla Ensure and a case of canned juice.
"I'll take care of it," I told her.

And while I rearranged the things in her trunk she told me about her son.
How he only had just a little bit of time to help her, and so she didn't ask him to help carry the groceries into the house.
"Maybe someone will take pity on me," she said, "and help me carry these into the house.  Or I can always wait until Tuesday when the nurse comes."

"But what if you get thirsty between now and Tuesday?" I asked.
She laughed and told me not to worry.  She had plenty already in the house to last that long.

"My husband is home," she said.  "He's on hospice.  He's really sick."

"And you take care of him?" I asked.

When she nodded yes I told her that she was a good wife and she shook her head.

"No, he's the good one.  He's taken care of me my whole life.  It's the least I can do."

* * * * * * *

A young girl, maybe 4 or 5, sat quietly on a cart filled with plants, waiting for her mom to check out.
All of a sudden she looked up at her mom and said, "Mom I just love you so much!"

* * * * * * *

A man came to the counter with a peach tree on his cart.
"One peachy peach please," he said.
"Coming right up," I replied.

"One awesome Mother's Day gift," he said.

"One awesome Mother's Day gift with a really sappy card right?" I casually hinted.

He laughed.
A lot.

* * * * * * *

A white haired man said to his equally white haired wife, "Babe hand me the car keys."

"Did you just call her babe?" I asked.

"I did.  She's been babe since the day we got married 53 years ago," he told me.

"That may be the sweetest thing I've heard all day," I told him.

* * * * * * *

A husband said to his wife, "The thing I really wanted to get you for Mother's Day didn't work out.  I just didn't have enough time..."

And as he was about to explain more the wife interrupted him and said, "These plants are all I need.  Thank you for the wonderful Mother's Day gift."

* * * * * * *

As a lady walked away from the counter she said to my sister, "Happy Mother's Day."

I helped her carry her things to her car and she said to me, "I probably shouldn't say that.  I would never want to hurt someone who doesn't have kids."

And then she told me about her two daughters-in-law who are both struggling to have children of their own.

* * * * * * *

I heard the news last night of a family member who found out she was pregnant.
15 years after she was told she would never have children.

* * * * * * *

Life is full of examples, both good and bad.
I am grateful to the good examples in my life, both of friends and strangers, who teach me every day what it means to be a wife and mother.

Happy Mother's Day.


Thursday, May 10, 2012

I Need A 72 Hour Nap


Let me ask you something.
If you saw this:


Would you be inclined to find the nearest Clorox wipe?
Me too.

But it would seem that I'm the only one in my office with that inclination.

For the love of ... 

* * * * *

8:00 this morning found us here:


Turning my baby girl over to the anesthesiologist doesn't get easier, no matter how minor the procedure.
Now that Emily's stomach has healed from her g-tube placement, they changed tubes again and gave us something more user friendly.
Emily handled it well and we were home again by noon.

There are two ladies who work in the surgical waiting room.
I have wondered if they ever get a day off.
When we walked into the waiting room today one of the ladies looked up and kind of moaned and said, "oh no, you guys?!"
I laughed and said "at least we're not here with Dr. K right?"
(Dr. K is our cardiothoracic surgeon.)

* * * * *

When you go through something life altering you learn really quickly who will be there for you when it really matters.
I've been surprised by the response, both good and bad.
Some of those closest to us, who should have been there, haven't been...
And those who we haven't talked to in years have been in the wings, ready and willing no matter how large or small our need has been.

One of those waiting in the wings is a friend I met while living in NYC over 15 years ago.
She touched my life then more than she will know, and has done so again in the last several months.
She instinctively knows when to step in and always has the right thing to say.

I got this in the mail from her today:



It could be my favorite thing ever.

* * * * *

Is anyone even reading this blog still?  Not this post...but this blog in general.

* * * * *

Just one more thing before I close my weary weary weary weary weary eyes.

I think it's only fair that I let you in on a little secret.
Emily's eyelashes?
One of the only benefits that comes with having a heart defect.
It's the medicine she was on to keep the extra fluid out of her body for a little while...it makes her eyelashes amazingly beautiful.

But her eyes?
Those are all hers and boy does she know how to get her way with them!
Seriously...she flutters those eyelashes and squints and grins and all hope is lost...



Wednesday, May 9, 2012

In Case You Wondered

I am getting farther behind rather than catching up.
May at a garden center will do that to a person.
We are busier than we've ever been and I work until midnight or later almost every night.

Emily is throwing up more than usual for her.
Tomorrow morning we are taking her to the hospital for a feeding tube change.
(This has nothing to do with her throwing up.)
They will sedate her for it and we will hope and pray, like we always do, that she will come through without any setbacks.

And yet in spite of puke and lack of sleep and way too much work everywhere I turn,
I know that I am blessed beyond measure.

And I want you to know that I know that.

That's all for now.




Tuesday, May 8, 2012

Glory Days (Recycled Post #1)


I think you should know that there was a time in my life when I could have my pick of any boy.
I'm pretty sure those boys stood in line waiting for their turn to be my boyfriend.
Once I hit the 7th grade things changed...but before the 7th grade...those were my glory days.

I had forgotten about my glory days. You know how it is, grade school was a very long time ago.
But the other day I drove past the house I grew up in and was reminded that those days really existed...









Don't you think it strange that no one ever painted over that shed?

I'm glad they didn't...some day when Emily needs proof that her mom was cool...
Well... I've got it.

Sunday, May 6, 2012

Believe It Or Not

Today is the first Sunday since we've been married that Jason and I spent the entire day at home.
It was perfect.
We made dinner.
We played with our sweet Emily.
I took a nap while Jason played the piano.
We went for a drive.
And we found our dream home.

Oh how I wish...


Thursday, May 3, 2012

Life Is Kicking My Can


I'm at least 3 years behind in life.
Work, laundry, grocery shopping...
I realized today that I haven't billed anyone (that's a small part of what I do for work) since January.
January, and it's now May 4th.
Oh my honk.

I send in my weekly plant orders at midnight and almost always I get a reply the next morning.
"Noelle, you are working way too late.  We appreciate your business but get some sleep!"

For the next few days I'm going to be recycling some of my favorite blog posts.
Wish me luck in my effort to find 2012.

Here's a picture to tide you over:



Tuesday, May 1, 2012

A Little Bit Of Q&A


Not a day goes by that someone doesn't say something like this to me:

"I read your blog but you left ______  out" and then they ask me questions about Emily.
I love that people care about my baby girl.

If you don't mind, I thought I'd answer the most common questions I get, and hopefully you will all feel up to speed on this 3-days-away-from-9-months-old little lady.


Does Emily sleep through the night?

Yes she does, and she has done since she was just a few months old.
As far as we know, Emily is never hungry, and it's usually hunger that wakes a baby in the night.

It's me that has the problem sleeping through the night.
I wake up at least twice a night to check on the little lady, and I usually have to move her back to the top of her bed.
She's a mover and a shaker, and the length of her feeding tube is long enough that Emily could easily get tangled in it, and she has, and so I go in to make sure all is well.

Will Emily ever eat by mouth?

We truly hope so.
I jokingly tell people that we hope Emily is eating by the time she goes to her senior prom.
Our real life goal is to no longer need the feeding tube by the time Emily is two.

I'm learning that feeding issues are really misunderstood.
I can't tell you how many times people suggest that I just need let her get hungry...that I need to stop using the tube...if Emily gets hungry enough she will eat.
Everyone has good intentions...I believe that.
My sister once said something about a feeding tube being the easy way out.
She was teasing, but I burst into tears.
No one wants their baby to live with a tube sticking out of their stomach.
And I can guarantee that if I could feed my baby the normal way, I would.

It's a sensitive subject for me.

We have a therapist who comes to the house once a week to work with Emily.



How is Emily's health?

She's doing great.
Really and truly.
(Minus throwing up every day between 9:00 and 10:30am but even that isn't causing her problems.)

Emily's heart is fixed for now, and although we will have regular follow-up visits with her cardiologist, we don't anticipate the need for another open heart surgery for several years.
She may need a cardiac catheter sometime before then, to widen her left pulmonary artery that is starting to narrow again. 
They have ballooned it open in two of her three heart surgeries, and may need to do it again when she's a little bit older.

Do you see any problems so far in relation to her chromosome deletion?

Emily's throwing up is probably because of 22q (the short name for the chromosome deletion).
Her inability to eat may be because of 22q.

Other than that, right now, we don't see any other problems.
Emily is a little bit delayed in her gross motor skills (rolling over, sitting, etc) but is advanced in her fine motor skills, and has been for a long time.
And no one can say for certain if the 22q is the cause for her developmental delays.
Children who spend as much time in the hospital as Emily did are usually delayed.

In the immediate future we will watch to make sure her speech is progressing.

There are a lot of other little quirky things that are probably because of 22q, but none of them have any impact on the way our little lady is developing right now, and so I try really hard not to focus on them.

This is another sensitive topic for me.
I'm not at peace with her chromosome deletion...not completely...and I feel like an awful person because of those feelings.

Why does Emily need a helmet?

Her head was flat...really flat...on the back and left side.
Her ears were uneven because of the extreme flatness.
The last time we went in to have her measured they measured it three times because they didn't believe it had changed as much as it has.




God must have a lot of trust in you and Jason to send Emily to you.

If there is one thing I know for certain...one thing I know that Jason and I will always get right, where Emily is concerned...
It's love.
We love our little girl and that love will get us through whatever we have to face.

Jason and I both get emotional at the thought of what would have happened if Emily had been sent to another home...to other parents...
We're grateful she's with us because we know our little lady will never lack for the one thing all of us need more than anything else.