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?

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!

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!

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.

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!

We are on night 3 at home with the bipap machine and monitor. The first night, I had problems with rainout (condensation forms in the tubing, causing it to flood the face mask) not good! Last night was better, still one rainout, but Ellie slept right through until 8 this morning.
Tonight, she didn't even flinch, or skip a breath when I hooked her up. The machine is so important, it is no wonder she adapted as quickly as she did.
We have her all set up in our room. The machine does make noise, a constant humming, then the whoosh of exhales, 20 times a minute, but it is soothing, and I sleep well knowing the monitor will beep if anything is wrong. Right now, she is satting at 99, and sleeping like an angel!!

In other news, Jakob is set to turn THREE on Sunday! I'm making him a crazy cake. He chose the design from Pinterest. I hope it works!! I spent today baking the cakes (gluten free for Auntie B! Did you know Betty Crocker makes gf mixes?) And making marshmallow fondant- sooo relaxing! Tomorrow I will assemble it all and hope no one laughs at me.

I'm wiped. That's all for tonight!