Yesterday turned out to be a relatively nice day. I woke Jason up, and found out that he hurt himself at work (nothing too serious, just really bad bruising), and that he wasn't going in to work that night. So, we made a plan to spend the day with Jakob. The three of us went in to visit Ellie around lunch time. We spent an hour with her, fed her, cuddled her, and then put her down for a nap. She was coughing quite a bit, a lot more than the day before.

Trying to keep both kids entertained

Then, we went off to Stanley Park, and the park at Second Beach. It was cold. Jakob ran around like only a child can, when the wind off the water slaps you in the face, and makes your eyes water. We stayed for about an hour, until the adults were so windblown and frozen we could barely make it back to the car. Jakob said he wanted to play there forever.

A firetruck!!!!!

To warm up, we stopped at Starbucks, had warm drinks and a snack. Then, when we could feel our fingers again, and our ears had stopped aching, we headed back to our Ellie.

Who doesn't love hot chocolate?

 She was just waking up when we arrived, which made me happy that we hadn't missed her awake time. Jason fed her, Jakob played with toys on the play mat, and watched cartoons. I puttered around, changed her clothes, rearranged things. We were there for another two hours, then we headed home for the night.

Hanging out on the floor

Getting my fill of Baby Love

Ellie and her Babies

We watched Rango, had dinner, and went to bed early.

Today, my mom was going to go spend the morning with Ellie, so the three of us have a little more time to clean the house and get ready for tonight. We spent the afternoon with Ellie, the nurses were already excited about the evening with her, and gave her a cute little knit hat which looks so cute on!

Isn't she pretty with those big blue eyes?

<3

Last photo of 2011

We went out to dinner with my parents to celebrate NYE. We went to a nice Chinese restaurant by my their apartment. I took a fortune cookie, and announced that it was a cookie for Ellie. The fortune read "The longest journey starts with a single step. Take it". Deep.
:)

This is impossibly difficult. I woke up this morning, aching for Ellie. Mothers and their babies aren't meant to be separated. I was thinking of sneaking off to the hospital early this morning, but then Jakob woke up, and two minutes with him made me see how much it hurts him to have me gone. All he wants is to snuggle, and to know he is just as important as his little sister. How can I be in two places at once? He asked over and over why Ellie was at the hospital, why she wasn't at home when her crib looks just like the one at the hospital. Sigh.

I called the hospital to let them know I wouldn't be in until late morning. I hope that's okay, it always feels wrong to tell a nurse you've got other things to do than be at your child's bedside. Jakob and I are going to watch Pocahontas, have some breakfast, and figure out the rest of the day. He might be able to come with me to the hospital, which would be awesome, at least until he gets bored.

Today was hard on me. I try so hard to be strong for everyone, and I know it's to the detriment of my health and sanity. I looked in the mirror this evening, and I only see a shadow of myself. My resolution for 2012 is to take the time to look after myself.

Jason came home early last night, which meant he was able to stay with Jakob this morning when I went to go check on Ellie. I was planning on bringing her home, but when I got to the hospital, the doctor convinced me to change my mind. When someone you trust completely, tells you it is in your child's best interest to stay in her room at the hospital until she's well again, you listen. At least, I did.

As I mentioned before, Ellie has paraflu. Usually it isn't a big deal, but in children with low tone and compromised immune systems, it can become very serious. Ellie really does need her bipap all the time, and if I were to bring her home, we would all be chained to my bedroom, to the machine, and her monitors. It's far better for her to be somewhere they can properly look after her, where I know she is safe.

At the same time, it breaks my heart to have her there. I look around at all the other children, all attached to monitors, ventilators, and I wonder how we got here, how this became our reality. Today marks the 100th night between Ellie and I, that one of us has had to stay in the hospital. One hundred nights. That alone is devastating.


The doctors' plan for Ellie, is to see her clear of this virus, then start growth hormone therapy, as early as next week. Due to the problems with her airway, and the apnea, they have been preparing me for the possibility of her needing a tracheotomy. I am able to take just about everything when it comes to news about Ellie, but this one makes my heart hurt. I don't know if I can handle it. They want her to stay for a while, nights mostly, after she starts the GH, as she poses such a high risk of respiratory complications.

When I left the hospital this evening, I had a meltdown. I sat in my car and cried for a solid ten minutes. The house feels wrong without her here, I miss her. I am so tired, but I can`t sleep. I hope to God next year is better than this one has been.

Elliie has human parainfluenza virus, paraflu for short. I think we all have it, but E has it the worst.
Wee nugget is in isolation in the TCU. She is okay, but she needs her bipap all the time unless she's eating or having playtime. Looks like I might be spending new year's eve here with her. Sigh.
I am ever grateful we have such a great care team, and our families are so supportive.
Hoping to start 2012 on a good foot.

Today was rough. Last night, Ellie-belle was supposed to spend the night at TCU, but she wasn't feeling well. She had a fever, a little bit of congestion, and wouldn't tolerate her bipap at home. So, being what I thought was considerate of the other patients, I called the respirologist on call. Whoever that was (and it wasn't one of our doctors) advised me to take her through Emergency first, to make sure she wasn't infectious, before allowing her back to TCU.

5 hours, chest x-rays, pee test, and a blood test later, they told me that she was too healthy for the ER, too sick for TCU, and that TCU doesn't take children who have colds.

Pretty even when she's under the weather

It was midnight by the time we left, I hadn't eaten since lunch, and I was feeling rotten myself, so we spent the night at my parents. I slept on the floor, since they don't have a spare bed at the moment. I woke up feeling sore and groggy.

A little while after, the phone rang. It was our respiratory doctor, calling to apologize for the disaster of an evening we had. She said the doctor I had spoken to, apparently hadn't "gotten the memo" about Ellie. Sick, or not, Ellie is to go whenever we want, or whenever the doctors there want, to the TCU, no questions asked. Right now, she's in an isolation room, but whatever magic trick they have is working, because she's happy with her mask, and she's sleeping.

Next time, we are to just show up. They said it was ridiculous to be told that E can't go in if she's sick, she needs even more monitoring when she's sick to protect her airway! So, the offending doctor was put in his place, and now we're back to our little routine of nights off for Mommy.

Hoping I can recover from my bout of illness quickly. I am tired of being sick!

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Christmas in Pictures

Potatoes boiling, roast waiting to be dressed

Smothered in Dijon and Horseradish

Wrapped in Bacon, and surrounded by Onions

Yours truly, at my post in the Kitchen

Dinner is Served

Our monster tree, and the gifts for Christmas Eve

Jakob hiding in a box

Ellie and her new baby doll

Daddy setting up the Pirate Ship

Ellie and her new favourite toy

Driving out to Langley for Christmas Day Dinner

Ellie and Mommy

Pretty little Ladies

The house was too hot, the girls lost a few layers