Saturday, December 31, 2011

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?


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.

Friday, December 30, 2011

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.

Thursday, December 29, 2011

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.

Wednesday, December 28, 2011

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!

Growth Chart Calculator


Monday, December 26, 2011

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

Saturday, December 24, 2011

I am so excited about making dinner for Christmas Eve this year. I am making Danish rice pudding (risengrod) to start, followed by bacon-wrapped beef tenderloin, with caramelized shallots, lemony swiss chard, roasted potatoes and red cabbage. We are having a christmas pudding for dessert. I hope to take photos of my cooking. So far I've prepped the potatoes and onions.

We are going out for a short visit, and will be back to cook up a storm!

Hope everyone has a hot meal tonight. Have a blessed evening.


We've had Ellie on bipap for just over three weeks, and it's safe to say I haven't slept more than four hours at a time, often much less, since then. The mask moves in the night, and she fusses, and I need to readjust it. When I ignore it, her alarms ring off. Fun times. Or not...
Lucky for me, her respiratory doctors actually care about the well being of our family unit, not just about Ellie, and know that I cannot function properly, let alone care for everyone if I am sleep deprived.
Until we are accepted into the At Home program, and get funding for a night nurse, Ellie is going to be having regular sleepovers at what we're now going to call Hotel Children's Hospital. She's in the TCU (transitional care unit of the ICU), but just there overnight, where someone trained in respiratory therapy can watch her, while I sleep, in my bed at home.
Last night was our first night, and I must admit it was hard to leave her so close to Christmas. She knew I was leaving, which made it worse. But, I slept like the dead, and woke up this morning completely ready to face the day, to cook dinner, to prep for Santa's arrival. It was so good. And, my parents picked her up this morning, and will bring her out this afternoon.
Until she grows (which she won't do much of until she starts GH therapy), she will need the bipap machine, and will also need close observation at night, because her face is so small. If her face grows, she can fit better masks (not this one that they don't like to use because of safety issues). I have no issue leaving her there overnight on days where Jason is working, and where I'm worn out. I am so grateful to have the complete support of our medical team. It really is a great feeling.

Thursday, December 22, 2011

There's nothing quite like being housebound with sick kids, alone. I had plans to go to the fabric shop in town today (which closes at 5), as soon as Jason came home from work. Because he hadn't called yet, at his normal quitting time, I called him. He is usually home at 3pm on this shift, tonight he won't be home until at least six. Sigh.
Jakob was up in the middle of the night with a high fever, woke up at 11am this morning, and has been in my room  all day watching movies. He didn't want to go for a walk, and he never, ever says no to a walk! Ellie must also not be feeling well, she's been especially whiny, and sleepy.
I am dying to leave the house, or even to go downstairs, but Jakob freaks out when I ask to leave, even just to get a cup of coffee.
I was going to make these:

They're super cute, fancy cloth napkins. I wanted to do a whole bunch of Christmas themed ones for our Christmas Eve dinner. Out of the yards, and yards of fabric I have stashed away, I have nothing remotely Christmassy. Oh well.

I have a few other little sewing projects I wanted to do before Christmas Day.

Appliqued, and painted onesies for my niece, Linnea:

A coffee sleeve for my sister-in-law:

A few of these (mom, mother-in-law, sister-in-law)
A couple of these:

I might be able to get a few things done. I have the jersey for the bracelets, cute, no? I also have the fabric for the eye shades, the coffee sleeve, and the applique, but I can't get any of it done if I don't have Jason home to watch the kids. I guess they don't have to get done, I just wanted to beef up our Christmas gifts this year with a little homemade love.

Wednesday, December 21, 2011

Right, I meant to post last night after my shower, but I got sidetracked with writing. So, I washed my hair with baking soda. To be honest, I love the smell of baking soda, I'm not sure why, so while I was showering, that part was fun. My skin felt very soft, too, which I guess is a nice side effect to natural hair cleansing.
My hair felt squeaky clean, coming out of the shower, and I had no problem brushing it out. This morning, it was staticky, which is unusual for me, and I'm not sure if it's because the air in our house is dry, or if it's because of the baking soda. My hair looks very clean, it's light and bouncy. So far, it's pretty cool.
I'll see if my scalp can handle the lack of H&S, if it can, I might be willing to give it up!
Today Jakob and I did some more crafting. Yesterday we didn't actually get all that much done, as he had a short attention span. We got the Santa napkin holders done, a red and green wreath-type thing, a couple paper trees, the melted snowman ornament (which goes through way too much hot glue to be fun for me).

Here's a sampling of what we did today:

A pretty paper star for my front door. I intended to get a proper wreath this year, but because I am so late in getting everything, I haven't been able to find any that I like! This was a lot of fun to make, super easy, all you need is paper, scissors, and hot glue! It took maybe half an hour.

Jakob LOVED making these. Then again, the boy loves getting covered in paint, so it's hard to go wrong when painting body parts is involved. We recently were gifted a set of fantastic finger paints. I painted his feet green, and his toes red. The paints came with foam stamps, so we used the star to make the tree topper. We made several of these.

Every year, I've made a point of making an ornament of Jakob's hand print. It serves to remind me how quickly children grow. This year, I decided to paint the ornaments, and we made enough for our house, my parents, and the in-laws. My salt dough is easy to make. You need:
4 cups of flour
1 cup of salt
2 cups of water.

Mix them all together (adding water slowly, because you might not need the full 2 cups). Knead forever, roll out, and press in your hands, feet, who knows what, then cut around the shape. Use a straw to poke in hanging holes. Bake on parchment paper, at 300F for 25 minutes.

When cool, paint! Or don't...

Better get back to decorating our monster tree, before the hubby loses his mind. Happy Holidays!

Tuesday, December 20, 2011

One of my friends recently blogged (here) about using Baking Soda in place of shampoo. I love my shampoo (I'm a Head&Shoulders addict), but I am open to the idea of using something completely natural to clean my hair with. So, I'm going to give it a shot.

I don't have a before picture, because it's late, my husband is sleeping, Ellie has about half an hour before she needs to be hooked up to her bipap machine, and Jakob refuses to sleep. I don't have time to make myself photo worthy, just to wash it all away :)

But, I thought I would say that I'm trying it, and I will let you know how it goes. I honestly don't think I want to completely abandon my shampoo and conditioner routine, but you never know!

I feel a craft storm brewing!!

Jakob and I haven't crafted in far too long. I've been so busy with birthdays, baptisms, and prepping for the holidays, that I haven't had time to sit down and really get busy making things with him.

Today, we've got a lot in the works!!

We'll see how much we get done!!

Sunday, December 18, 2011

Jakob and I made the banners for Ellie's baptism get-together. I used my Cricut to cut out the letters, and triangles. We glued the letters down, then glued the triangles to some bias tape I had from my sewing. I covered our red walls with table cloths, to go for a more pink and white theme. We had some photos blown up to 8"x10", which I think turned out really great.

I had so much fun doing the baking for the party this week. I really enjoyed myself. The cake was my favourite part. It's a three layer white cake (I used 6"x2" pans), with an imbedded hot pink cake cross, and buttercream ruffle icing. I had a couple disasters with my new cake pan, prior to my use of a cake release recipe. With the dud cakes, I made cake balls. No time to properly decorate them, so I arranged them in snowflake shapes and iced them.
My dad is a big fan of Parisian macarons. In the past, I've brought them home from trips to France. I was quite pleased with my version, although I will work on a better filling for next time. I think I also need to use a round piping tip for shaping the shells, mine were a bit uneven. They didn't last long, the plate was empty before everything else! I guess no one really noticed what I noticed!

It is late at night, and I've been up since impossibly early this morning. For some reason, I can't seem to fall asleep. The hum of Ellie's bipap machine is annoying me, and she is restless tonight. Jason is sleeping in what will probably never be "her" room, and Jakob is snug in his bed, fast asleep.

Today was a big day. Today was Ellie's baptism. Our family isn't particularly religious. What I mean is, Jason and I very rarely go to church. I was raised a Lutheran, and I hold sacred a lot of the traditions from my upbringing, like going to church on Easter and at Christmas, in celebration of marriage, birth and death. I am a deeply spiritual person, and while I have some issues with religion, I do believe in a higher being, and I believe that we are here for a reason. I don't really believe in chance, but I do believe we get what we can handle, and not a bit more.

I was incredibly proud today, to have my daughter experience this ritual, and become part of a bigger family. I was touched by the turn out, so many people attended, so many of our friends came, and it warmed my heart.

Today I felt joy in knowing the people we surround ourselves with, are the people who support us, and love us, regardless of anything else. Today I felt the love, and open hearts of everyone who came to support Ellie.

I thought I knew a lot about the world, about people, when I had Jakob. It's a wonder how much children teach us about ourselves, and about others. When Ellie was born, I realized just how much I have yet to learn.

Ellie has a gift. She has the ability to draw everyone in. I have yet to meet a person who has seen her, held her, and not fallen hopelessly in love with her. In the ICU, I barely had a chance to hold her, she was too busy doing rounds with the nurses, being passed from doctor to doctor, not because she was sick, but because she brings calm, and joy, and love to people when they need it. She causes people to take the time to notice how lovely she is.

We were out shopping the other day, the kids and I. I knew I wouldn't be able to push a stroller and watch Jakob, and shop at the same time, so I asked, at three different shops, if the teller would watch Ellie for me, while Jakob and I shopped. At each shop, she would draw a crowd. Store employees would compete for who got to look after her, versus serving other customers. I know, other babies probably also get that reaction, but people remember Ellie. Everywhere I go in town, I have someone tell me they recognize her, they know about her, they've ready about her, or they've heard about her.

The majority of people are so positive. People often ask why she is so little, and are open to talking about PWS and what it means for us. If I'm inclined to be gracious, as I've been trying more often to be, I will go into as much detail as the person asking would like. I've had half hour conversations with strangers about the struggles my baby will face, and yet I'm not afraid of the future. I know Ellie will be fine.

What saddens me, and what I don't understand, is why there are people who won't let her in. There are people who used to feature heavily in our lives, until we got her diagnosis, until someone said "She's different". People who have never asked to meet her, who stopped calling, who just disappeared. Maybe they're scared, or maybe they don't know what to say and they feel awkward. I don't know, I can't explain it.

What difference does it make if Ellie is missing a couple chromosomes?

Tuesday, December 13, 2011

I am so tired these days, Ellie's bipap machine rings off several times a night, which means I'm having a hard time getting much solid sleep in. She, on the other hand, is doing well!

Today we met with a social worker for the At Home Program. Fingers and everything else are crossed that she gets into the program, it would mean funding for her bipap machine and monitor, as well as any additional equipment she might need down the road. If we get into the program, and were to know that funding is secured until she's an adult, I think we might reconsider moving to Alberta. Traditionally, the program does not like to accept infants, but Ellie's case is special, and our social worker seemed to think Ellie would be accepted into the program. We can only hope.

This afternoon, we have a follow-up appointment with Ellie's respirologist, to make sure the bipap is working as it should. I'm not thrilled with the fit of her mask, and we have had continued problems with rainout, so I am anxious to see if we can get that sorted out.

I got exciting news this morning. Ellie's baptism is on Sunday, and in lieu of gifts (seeing as our house is already full to the brim), we decided to fundraise for BC Women's Hospital Foundation, trying to raise enough for a NICU dedication tile for Ellie. I worked with the staff at the Foundation, to create a donation sheet, and added a photo of Ellie, and my own wording. Well, this morning the phone rang, and it was the lady I'd worked with, calling to say that the CEO had seen our donation form, liked it, and wanted to know if we might be interested in participating in their revamp of the donor program. They're envisioning
a plaque that’s about 2x3 feet, for the donor wall, that would have her picture and the following quote:

Ellie is our miracle. We count our blessings daily, and know that without BC Women's Hospital, and the NICU, we wouldn't have her here with us, thriving, growing, and astounding us daily with her progress. In recognition of how far she has come, we are giving back, and dedicating a tile in celebration of Ellie's birth. ~ Susanne and Jason

The Campaign Director for the NICU and the Grant Writer were both asking if they could put the photo and the quote in presentations to perspective donors for NICU! AND they’re in the process of building a new, interactive website. They're going to have a section called I’m a BC Women’s Baby!. They're going to feature little Ellie and the quote to launch the new section for parents.

I am SOOOOOO excited!

Sunday, December 11, 2011

We've slowly been going through my late-great aunt Vera's apartment. I found, at the bottom of her closet, still in their box, never worn vintage Bali brown leather boots! Vera wore size 10 shoes, these are my size (8), and fit like they were made for me. I love them, they're amazing, totally current, despite being old. LOVE. Thank you, Auntie!

Thursday, December 8, 2011

No news yet on whether Ellie can start gh therapy. Man, the wait is frustrating. I have a friend here, whose baby girl is a month older than Ellie (well, three months, really), and she's transformed from a floppy, tiny thing, to a strong, standing, amazing munchkin. Ellie is stuck in the newborn phase. Seriously, she's stuck there.
I don't know what more they want from us, we have the bipap machine, the monitors, the reflux meds. I am doing everything I am supposed to do. I am dying for her to have access to something that will change her life, and ours. I am ready for her to meet her potential. I am sick of thee process.
Ellie is coming up on eight months very quickly. Can you believe it? A third of a year... and still nothing. I thought she was going to be on it in the summer.
Why is nothing easy with her? I just don't understand.

She is so beautiful, though, that makes it all a little bit better.

Saturday, December 3, 2011

The Cake!

I 100% enjoyed myself making this cake. Jakob chose the design, and I did the rest. Made the cake yesterday, a deluxe vanilla cake on top, with a brownie base. Both are gluten free. Then, I covered the cake in a simple syrup, made the marshmallow fondant (really fun, and very easy to do). Today, I rolled out the yellow, and covered the cake. Then, I added the white for the vest, the black cow spots, the blue jeans, the belt, the buckle, the stripes, the details on the vest, and the sheriff badge. Then, added the red scarf, the detailing on that, and finished it off by adding the cowboy hat, which is filled with brownie! I hope he loves it, and I hope it tastes good!

Only thing left to do is to make some extra cupcakes, and I'll be done!