Saturday, February 28, 2009

Yesterday at Breakfast

Zar: What are you getting?

Me: Dunno yet. Eating this early makes me sick.
Zar: I'll tell you exactly what you are getting. You will get the oatmeal.

Me: Huh. I will get the oatmeal. And two eggs. And a diet coke.

Zar: Wow. I'm getting the Brewer's Breakfast.

Me: Lotta food.

Zar: Yes...

Me: What?

Zar: Neither of us are getting pancakes.

Me: I noticed that too.

Zar: We could get a side says "One Large Pancake." I kinda want a pancake.

Me: That is a ton of food. Oatmeal, eggs, coke, orange juice, toast, hash browns, omelet, bacon, and one large pancake? It's a BIG pancake.


Zar: I feel like Boofus wants us to have the pancake.

Me: Yes. We will have the pancake for Boofus. That is what she would want.

Zar: (to Boofus) Okay Boof, we will get the pancake too. Even though that is a ton of food.

Both grin.

Thursday, February 26, 2009

The Good Things

I love having a house filled with flowers.
Sweet synchronicities.
Having a couple of days to just be with Zar and Ella, no work, no appointments.
Getting to see people I haven't seen for years, and have missed.
Knowing I am loved and supported by so many people.
Wow, nothing else seems to matter!
Feeling so close to Heaven, as part of me is there.

For the first time in four years, I'm not worried about Charlotte.

Wednesday, February 25, 2009

The 2nd poem from my talk today. A few people asked for copies.

In Charlotte's new room filled with glory and light

a dear little girl rests soundly tonight

and grandmas and grandpas have tucked her in tight.

A brown dog rests her head at the foot of her bed

near a big stack of storybooks just freshly read.

She listens to lullabyes with good little ears

stretches little strong legs which brought her here

and of needles and haircuts she has no fear.

Her only regret is she knows we are sad

she looks down and says "Goodnight Mom and Dad-

I'm safe and I'm happy in this Heavenly place

I'm strong and I'm glad there's no tube on my face.

When I first arrived with a dance and a twirl

Jesus held me and said "Well done little girl-

You did just what you were sent there to do

You brought nothing but joy and perspective too

And all those who met you saw Me in you."

They gave me a big party with suckers galore

and beads and monkeys, but daddy, there's more!

I can do all the things I could not do before.

I'm glad Ella is with you, you'll be alright

Don't want you to miss getting up in the night

and when missing me is too much to bear

I'll send a kiss through my sister, you'll know I am there.

Goodnight mom and dad, I'll see you so soon

I can't wait to show you my new princess room!

Thank you for taking such good care of me

Now I'll watch over you and my whole family.'

Monday, February 23, 2009

Everything is so much easier now yet so much harder.

I cleared Charlotte's room of her "special things." Goodbye IV pole, feeding bags, syringes, fan, oximeter, tape, tylenol, purifier and such. She doesn't need them. Her room looks beautiful with the bed made up with her last blanket, pink flowers on the nightstand and the window open wide.

I had to tell Make a Wish that Charlotte had made her wish and it was to go home. I'm sure Heaven Disneyworld is incredible. And she can run from ride to ride.

Thank goodness for Ella and her sweet smile. Thank goodness our house full of little girl things can stay that way.

Saturday, February 21, 2009

On June 30 2005 our whole family met in a hospital room and took turns passing around a precious baby. There were tears, blessings given, compassionate doctors and nurses, oxygen, and so much love and light.
This morning the scene repeated itself, in a different hospital, a different room, but the same family and the same baby, now 18 pounds heavier and even more precious than she was the day she was born.
Charlotte passed away this morning. She had a big send off party, love and blessings and tears, and when she knew we were as ready as we were going to be, she went home, very quickly and peacefully and in her mommy's arms.
We have had a long, exhausting, devestating day, but just when I feel like I can't do this, I can't get through this, I catch a glimpse of my daughter, laughing and dancing and hugging her dog Molly. My heart is filled with warmth and peace and I know I can go on.
We will go on. She's still with us. She will always be our precious baby girl.

Friday, February 20, 2009

This is what "spent" looks like.

Thursday, February 19, 2009

Wow, I wish yesterday had been as easy as my boring bleak schedule promised. I did not watch Law and Order. I did not see Ella at 2. I did not sleep alone in my big bed. I wish.
Charlotte took at bad turn last night. During American Idol, she started to drop her oxygen sats. She had been at 100 on 5 liters all day (I know, FIVE LITERS) and just dropped to 97 or 98. When I told Zar over the phone he freaked. But it was just two or three little points. By the time Zar arrived three hours later she was on 8 liters, and satting at 93 or so. She got a super nebulizer treatment and a chest x-ray and a blood gas. Her xray was white. Bad news.
But when I left at 11:30 she was on 6 liters, and 96 or so. Not too bad. I went to my moms, gazed at sleeping Ella and flopped into bed. My phone rang at 1:02 am. Charlotte was not doing well. I got up, looked at Ella, got dressed and drove back to the hospital, shaking wildly the whole way, my response to scary situations. She was on 15 liters and a new mask, and floppy and not good. Not good. We followed behind her bed and they took us to the ICU, where I don't remember much due to exhaustion and overheating. This is the second time this week I have nearly passed out and had to have a nurse tell me to sit down, when they should have been able to focus on Charlotte. "Don't tell them I'm a nurse" I begged Zar.
I was at moms sleeping again from 3-6:30, and I got to snuggle Ella this morning and drive home with Zar for a change of clothes. Charlotte is on high flow nasal cannula, 8 liters, alert and complaining, sharing a room with two other kids with RSV. The PICU is a rough place. They kick you out from 7-8 both morning and night to talk about your kid without you weeping over their shoulders. Zar got yelled at for changing Charlotte's oxygen, something he is trusted to do at home by the hour. The alarms go off every couple of minutes and you can't tell who's alarm it is. An angry, scary dad swore at the donut lady this morning when she told him not to take more than three. I did not miss being here.
We are okay still. We both feel like she will pull through this again, even if it takes a long time. We have been given so much more than we ever thought we'd get with her, so much time, so many smiles and laughs and milestones, so much. Grandma Hayes said yesterday that her biggest fear before Charlotte was born was not getting to get to know her. But she does know her, and incredibly, Charlotte knows her too, and none of us ever expected to get that.

Wednesday, February 18, 2009

Another Day.
Charlotte is wheezing a lot, clearly uncomfortable and drenched in sweat. It's hard work to struggle for every breath.
Happily she is more awake and playing with her butterfly balloon until she tires out, and talking to herself.
I miss Ella, who is with Aunt Stephanie today. Ella watched me leave this morning, looking sweet in almost too small pink pajamas. I am glad she is too young to cry when I leave. My heart broke anyway as I shut the door behind me.
Again, I do what I can for Charlotte. I change her diaper, brush her teeth and put chap stick on her pale dry lips. I hold her in my lap and thump on her back until she protests. I tie her butterfly balloon to her wrist so she won't lose it to the ceiling.
I settle in for another day.
Today's Plan:
Update CaringBridge.
Write to my boss, ask for Friday off.
Thump Charlotte.
Law and Order at 10.
Take a break to see Ella at 2.
Back to hospital til 10pm when Zar gets off school.
Drive home with my sleeping baby and try to sleep alone in my big bed.
Come back for another day.

Tuesday, February 17, 2009

Charlotte is very sick.
She has RSV. Moms of winter babies will know what this is. We always make our eyes big and say "It's RSV Season! No you can't take the baby to clinic! It's RSV season! I can't be the nursery leader! It's RSV season! Wash your hands! It's RSV season!"
Charlotte used to get the vaccine, what amounted to two shots in the leg on the 15th of every month from October to March or April. It was expensive and annoying, but she never got RSV.
I sit alone with her in our hospital room, 3033. It is quiet except for the hiss of 5 liters of oxygen delivered by mask, the high pitched wheezing, snorting, crackling, gurgling of her lungs, the click of her feeding pump, her occasional cry of discomfort and the odd pager going off in the hall. So not quiet at all.
Charlotte has had a cold pretty much all winter. When she starts breathing through her mouth, we put her on an oxygen mask and her saturation go right up. We say "see, it's just her sinuses. It's not in her lungs." And we are comforted.
I worked yesterday and Zar was home with the girls. He sounded sad and discouraged on the phone. She wasn't satting well, even on the mask. I figured she needed mom. She needed mom to give her a bath, thump on her back, saline and suction out her nose, and tape the probe on correctly. So I went home. I did all my mom things. I tried everything, even a suppository. Nothing to heal your lungs like a good poop. But nothing worked.
Zar did his dad things. He gave her a blessing, held her and begged her to be okay. He let her pull off his glasses and kissed her. Nothing worked.
We put our heads together and prayed. Even though we didn't want to, and we didn't think it would help, and we have a baby and it's RSV season, we loaded up and went to the hospital.
The waiting room was packed, what seemed like hundreds of bundles wrapped in blankets, tired, sad looking moms, a girl in a wheelchair, a crying ten year old with a sling, a family in ski clothes, and we almost walked out. The triage nurse looked at Charlotte, cradled like a big 34 inch tall baby in her piggy jams, in her daddy's arms, and took us right back. Her heart rate was 175, her temperature was 105, her sats were low, she was pale and blue and screaming. Everyone else waited five hours, but we went right back.
Charlotte has an IV. Her first in nearly two years. She is exhausted, and uncomfortable, and she tosses and turns and tries to get a good breath. Her hair is full of sweat and her nose is bloody and runny. I can hear her heart beating from here, it gives her wheezing a rhythm. It is terrible.
All I can do it sit by her side and pat her when she cries, put her mask back on when she wiggles out of it. It is hard to be a mom. It is hard to have a sick child. It is hard to understand why. Why. Why does she have to suffer? Isn't it enough? Enough to be on oxygen 24 hours a day, enough to be fed by tube, enough to not be able to walk, or speak, or live a normal life? Couldn't RSV just passed us by?
When is it enough?

Wednesday, February 11, 2009

It is February 11th.
Ella turned Four Months today. Technically she can start on solids now, but we'll be waiting til we see Dr. Cline next week. We'll be waiting as long as possible.
It's also a special day, aren't going to believe this...
My life started FOR REAL only 15 short years ago. It was February 11th, a Friday, and I was dancing with Jeff in the Old Gym to "Forever Young." I was wearing a red zip up tunic thing with white flowers and white leggings and a white stretchy headband. For Valentines, you know. It was the Valentines Dance in 7th grade, and I remember thinking how lucky I was that "Forever Young" is such a long song, and also thinking that I would always remember this date, February 11th, as the day my life really started. Because I was dancing with a boy.
I remember thinking this was the start to my teenage years, and from here I could look forward to such events as my first kiss (June 6, 1995) my first date, first boyfriend, first time I would be serenaded outside my window, (didn't happen) first giant bouquet of roses to be delivered in front of all my friends, inspiring incredible jealousy, (didn't happen) first earthquake to hit and make Jeff (or John, or Mark, or whoever) realize how much they really, really loved me. (Don't recall that coming to pass either.) I had big, big plans.
And I was right. I had lots of painful, terrible, terrific dramatic fun during those years, obsessing and weeping and burning pictures and writing poems for a bunch of skinny high schoolers. I made a lot of wonderful friends as well, the notable male being Lincoln, who made high school, for the most part, fantastic. It was the beginning of my teenage years, and the end of my babyhood.
Ella's babyhood is just beginning. It terrifies me that one day her babyhood will end, in the arms of some skinny dark haired 7th grader who doesn't want to dance with her. I can only hope her babyhood lasts that long. She has such a long, wonderful, horrible time ahead of her, and all I can do is treasure these short moments when all she wants is to be in my arms, looking into my eyes, and listening to me serenade her.

Sunday, February 08, 2009

Been sick.
Worked for 40 minutes on Friday and went to mommy's, the best place to be while sick. Slept on the couch a lot. Let her make me home made bread. Let her bathe and feed my kids. Let her put up with my whining and sniveling.
Worked on Saturday. Took Tylenol Cold, Day time Formula. Right. Loopy all day, kept randomly smacking co-workers in the arm, couldn't remember how to pull up results I've pulled up daily for five years, fell asleep on the desk for 20 minutes and no one woke me up. That was sweet of them.

Still sick today. Spent it snuggling, bathing, snuffing, patting, medicating two sick little girls. It made me sad to give Ella her first taste of tylenol, she's never had anything but milk. She was not happy about it. She seems a little confused about the coughing and runny nose, it's her first time. Realized I'm the mommy now, and I'm doing my best to comfort and cozy them. Charlotte got a root beer sucker, Ella got a long massage, both got baths and lotion and fluids and love. Poor babies. At 3pm I went upstairs for a long nap. I'm still new at the mommy thing. Plus my kids don't eat home made bread.

Wednesday, February 04, 2009

There are small, simple, wonderful things in life that make it worth living.
I get to go find Valentines to send with Charlotte to school next week for her classmates. Ella wore her new Dalmatian outfit last night, complete with doggie ears on the hood. I slept til 8 this morning as did my kids. Filling my face with canned whipped cream out of the fridge, which I've done three times today. Watching "What Not to Wear" for two straight hours. The sun through the window that reminds me of spring, and the Costco Sunflowers on the table. Just simple things.
There are big, wonderful things too, amazing once in a lifetime things that surprise you and change you and make you want to call everyone you've ever met.
The morning Charlotte first reached for a toy, one week after her skull surgery. The morning I found out for almost certain that Ella would be healthy. Meeting Shannon's new little boy...who fooled everyone for months into thinking he was a girl.
And then last night, getting the phone call to tell me that Charlotte is now officially a "Make A Wish Kid." Waking her up this morning to tell her she is going to Disney World in a few months, and maybe will get to ride a horse, and get pictures with every character in the park, and not wait in any lines, and just have an amazing time where it will be all about her and she will get all the attention she can stand. And not knowing exactly how much she understands, but having her smile and laugh and pull my face in for a kiss.