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.

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.

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.

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.

This Day ... Oh, This Day ...

I don't have words.  I really don't.

This morning my little sister gave birth via c-section (technically a t-section) to her tiny little man.
He weighs 2.5 lbs, and just a few hours after his birth he was breathing on his own.

The doctors warn that the next 24 hours are critical for my little sister and have told her that visitors are not allowed.

In another room of the hospital my neighbor, who was having the same complications as my sister, also had a c-section to bring her sixth baby into the world.
Just hours after her baby was born, my neighbor passed away.

As births and a death, such a tragic death, were happening, I was sitting in a chapel to honor a great man who after 91 years of living each day to the fullest, was able to be joined with his wife who passed away not too long ago.

This morning, in a hospital on the other side of the United States,  Emily's little heart sister underwent an incredibly risky surgery ... one that if successful, would make her heart whole.  Little Shiloh was born with a complicated heart defect and her parents were told at one point that Shiloh would very likely need a heart transplant to live.

Shiloh's mom posted this afternoon that the surgery went better than the doctors could have hoped, and that Shiloh has a perfectly whole heart.  Shiloh went from a future of heart surgeries to a future with a perfect heart.
She is only the 29th person to have ever had this procedure done, and her Mommy and Daddy took a gigantic leap of faith when they placed their baby girl in the surgeon's hands.

Shiloh's Mommy texted me just as I was leaving the funeral and sent me this picture:

The text read "Emily was in the gift shop."
I thought of my own sweet girl, who was sleeping in her Daddy's arms when I left the house this morning, who has been so so sick. So sick.
These little babies, they fight so hard - they fight every day of their lives - and beautiful Shiloh has been given a new chance at life. As I looked at the picture of 'Emily' tears streamed down my cheeks - tears of gratitude, tears of relief, tears of sorrow ... a little bit of everything was mixed into those tears.

My great uncle, the man being honored today, taught his family a song - a song that has filtered down through the generations, and is one that I know and love.

"Families are forever, we've heard the prophets say.
We'll learn to work together, take time to sing and play.
Then we become a circle, a never ending band,
For we belong together and together we will stand.

We belong, we belong, we belong to a family eternal.
We are strong for we belong to a wonderful family eternal."

Aren't we all family?
Living our lives separately and yet very much joined together - joined by sorrow and grief, joy and happiness, and miracles that happen every single day.

Thank you for being a part of my family.

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!

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!