Saturday, March 31, 2012

Easter Crafting

It's a crafting type of day. We spent the morning cleaning our house, and this afternoon DH is at the hospital visiting with E, whom he hasn't seen since Tuesday.

J and I are up to Pinterest crafts. We're in the process of boiling blow-out eggs, wrapped in silk ties! (

Okay, so here's how we did it. I poked a pin through the top of each egg, and a larger embroidery needle into the bottom to make a bit bigger hole. I used the bigger needle to break the yolk, and blew through the small hole, to empty the contents of the egg into a bowl (quiche for dinner!). Then, I filled the eggs with soapy water, and blew them dry. My cheeks hurt.
Using 100% silk ties that I bought at the thrift store for 25c a piece, I cut out a piece large enough to cover an egg. I didn't have any twist ties, like she used in the tutorial I was following, but I do have a lot of string. I wound string around the fabric (right side facing the egg), until it was all wrapped up. This took a little bit of time, but I got going pretty quickly. Then, I wrapped a piece of white fabric around the silk. 
 I placed the eggs in my biggest pot. I have this pot which has a colander that fits into it. It left enough space for the eggs to stay in the water, without floating to the surface. I put a quarter cup of vinegar in the water, and set the egg shells to boil for half an hour. After that, I took them out of the water, and set them to cool off before I impatiently snipped the strings, and revealed...
Here are the rest!!

Love this one, with the imprint of thread!

All the colors transefered so beautifully


My polyester fail!

Need a basket!

 I will take photos of the rest of them when my battery finishes charging :) Oh, and you MUST use 100% silk. I found a scarf at the thrift store, which didn't have a label, and I thought it might be silk. Turns out it was polyester, and while some of the color transferred, it was soooo much more faint than the transfers I got using silk.
When they were all dry, I oiled them up with some olive oil, and I'm just deciding what to do with them!

I found a bunch of awesome embroidery hoops at the thrift shop, when I was looking for ties. I filled them with scraps of fabric, and will put them on the wall in our den, once we remove all the boxes from in there.

I've been wanting to do this forever. I just need to find them a home.

Love the different frames, and different fabrics!

 I also found some brass candlesticks, I plan on painting, and attaching plates to, to make cakestands! (

My camera battery died mid-photo shoot, so once it's recharged, I plan on updating this post with photos of our finished projects!

Friday, March 30, 2012


I left the hospital this evening at 6:00pm. I packed up my laptop, pulled the charger from the socket, put on my coat and shoes, and kissed my baby girl goodnight. She knew I was leaving, she always knows. She looked at me with her crystal blue eyes, and "mum-mum'd" at me. I tried to smile at her, my mouth was doing the motions, but try as I did, I couldn't get the smile to reach my eyes, because they were full of tears.

I knew I wouldn't be going back tonight, I wouldn't be there for her in the night when she cried, like she cried for so many hours last night. I kissed her, told her I loved her, turned on the tv for her, since she's all alone, and I walked out of the room. I made it to the nursing station, to tell them I was going home for the night. The nurse there told me I looked frazzled, that I didn't have to worry about E, that I should go home and sleep. I caught my reflection in the glass of a door. Frazzled was a compliment.

As I left the unit, my eyes started burning, and I started to hyperventilate. I think the reality of everything finally hit, and I wasn't expecting it. It's as though I was in denial, slow in processing what happened on Monday. By the time I reached the main hallway, my cheeks were tear stained. I managed to pull myself together, until I reached the car park, and when I was in the privacy of my car, I had a big, huge, ugly cry. I was utterly hopeless in pulling myself together, and had to ride it out, until I was drained of tears, and my stomach muscles hurt from the exertion.

I dried my eyes, brushed my hair, smiled at myself in the rearview mirror, and drove home.

I wasn't in the mood to go out this evening, all I wanted was to snuggle Jakob, and to go to sleep. I got a hug, just as they were heading out for dinner. I called my mom, and had a glass of wine before having a hot shower. Feeling infinitely better, I put on my comfy pijamas, and crawled into bed to read a few chapters of my book.

When the boys came home, I had my special time with J. He was so happy that I was home this evening, it made me feel less guilty for leaving a sick little E all by her lonesome. In the past five days since I've been really "here" (as in present fully in the situation), J's speech, which is already very advanced, has exploded! I am constantly amazed by his level of communication, his manners, his kind nature. A few giggles from him, and I was finally feeling a bit less drained.

We read some stories, and snuggled before he went to bed. Now, I'm also ready for bed, and hope I won't have nightmares. I hope my little girl doesn't miss me as much as I think she will, and I hope whomever her nurse tonight is pays extra attention to her. 

Tomorrow is another day, another day closer to going home again, another day to feel a little bit better.

Day by day...


I'm dealing with a niggling writer's block. I know it won't last long, but I'm having a hard time getting around it, and there's nothing more frustrating to me than not being able to spill the words in my head.

Why do people write blogs? Why do people read them? How did the online world become so much a part of some of our lives, and not at all part of the lives of others? What would I do without the internet? Am I addicted? What are my reasons for having a FB page, a blog, participating in online forums?

I have been blogging since 2007. Before that, I wrote diaries. I filled books upon books with words. I can sit down with a pen, and some paper, and shut off the thinking part, and just let my subconscious out. There are often times where I read what I've written, and I can't believe that I actually wrote that. As part of a therapy session, long ago, I was encouraged to grab a piece of paper, and write down everything that popped into my head. I did this a lot, and usually kept them to myself, except for the times where I would inadvertently start doodling in public, at a restaurant, out a a bar, wherever, and people would take notice.

I started blogging, I can't even remember when, other than Blogger tells me I've had my account since 2007. I kept a blog of our wedding planning, of my pregnancy with J, of his first years, up until I got pregnant with E, started having complications, and decided that I should start a blog dedicated to that (here we are!)
I love to write, I long to write, I need to write. I also really like the idea of writing to someone, and when I write, I generally imagine myself writing to someone I will never meet, someone who will judge me based solely on the content of my posts. In the past, I've written about a vast number of things, and I always worried that people I knew, in real life, would think I was crazy for the things I write. Writing is my therapy.

Since E, I started reading more blogs. I followed some when I was on bedrest, because there were other women going though exactly the same thing as me! It was amazing to read posts from other mothers, and know that I wasn't alone, and more importantly, I wasn't crazy for feeling what I felt! I love my friends, I love my family, but no one I know in real life had been through anything like I was going through. 

I really write this blog, now, to keep a record of everything we're going through, to share with friends, and now I guess family too, what is happening in our lives. More so, I write to hopefully inspire others to believe in the potential of all children. I write to make people laugh, to see the bright side of things when situations are bleak. I write to show people how strong you can be, when you don't have a choice. I write to motivate change in people, to grow love in people, to make a difference. If I can help just one person through my writing, if I can help them see the beauty in their lives, the gift of every day, then I feel like I am justified in writing and posting for whomever to read.

There are people who don't understand. They don't understand why anyone would want to read about some stranger's life. My husband asked me the other day "Who would read your blog?" I told him there were several PWS families who follow us, and hospital friends, NICU and ICU friends, bed rest mamas... He admitted to never having thought about it. He was surprised when I told him there were blogs that I follow. DH is not even remotely active online. No FB, no twitter, no anything! He, like many others, doesn't understand the need to connect to others going through the same thing. It's entirely possible they think the online world is full of make believe and peg-legged perverts posing as teenage boys. (For the record, when we were first chatting online, on some 7 years ago, he actually wrote "Well, how do I know you're not some peg-legged, bingo playing pervert trying to seduce me?"... HE said that!)

At the hospital today, another mom, who's been there for about a month, stopped to chat with me. She said "I just want to give you a big hug for everything you've been through, I don't know how you manage". It struck me as an odd thing to say. People ask all the time how we deal with everything, how we are so strong. We just are. You would be too, if you were in an impossible situation. I don't have a choice, but to be strong for my daughter. I wish people would stop asking! No one asks the parents of a newborn how they're coping with not sleeping, no one would say "I have no idea how you can live with no sleep". They just do!

 I don't feel badly for our situation, sure it would be delightful to be home, but I would NEVER change Ellie. She is perfect in my eyes, and so very full of potential. People will always talk about others behind their backs, but I hope that people talk positively about us. Ellie is here to amaze people, and in turn makes us amazing. I've been told so many times that I'm strong, and amazing. I am humbled, I'm not trying to impress, I'm just doing my thing.

This blog isn't about getting an "atta-girl" response. I could care less (no offense to those of you reading) if no one read this. It's a big awkward knowing people do read it. 

I love the internet. I love social media. I love being able to connect with friends who live around the world, who I can't see every day. For someone who isn't involved at all, it would be hard, I imagine, to understand just how personal online friendships can be. I cried when my friends dog died yesterday, I rejoice in friends having babies, in getting new jobs, in loving life. Without leaving my little girl`s hospital room, I can connect with friends, catch up on what`s new with people, I can be a friend without actually being there. DH works with computers every day, and has no interest in online life, although we met online. He does understand that it's important to me, and he lets me have my internet time, while he gets his man time.

If I didn't have the internet, I would be an awful friend. I don`t have time to see people regularly. How can I? I practically live in this hospital. It's amazing how inclusive mama groups can be. I participate in several, and it's such an incredible relief to have somewhere to go to vent about whatever, from relationships, to baby questions, you name it! I can guarantee that the majority of my real life friends don't want to know about the consistency of E's poops, breastfeeding issues, or post-partum hair loss. 

I might spend more time online than the average person. I also likely share more than the average person, but that's because I lead a life less ordinary. I have spent most of the past five days, in an isolation room with a little girl who can't talk, who sleeps almost all day, and with few people who actually come to speak to me. If I didn't have an outlet like this, I would feel so very alone. 


E's nights and days are completely mixed up. I don't blame her, we're in a room with no windows, and Dr. Dee said that's enough to make anyone go insane. They're trying to get us a "room with a view", but that's dependent on a little girl in another isolation room being moved up to the wards. I'd be happy to be back in the TCU, even if it was just in an isolation room, we feel so far away from everything over here.

E's had lots of people stopping by to see her through the windows. They wave, she smiles. People we didn't get a chance to say goodbye to, are so happy they get to see her again. I'm constantly amazed at how E draws people in, she's got the power to reach even the most hardened of hearts.

Look at those eyes! I know, she's my baby, but she's the prettiest little girl I have ever seen. She knows so much, you can see it.

I've been struggling with all of this. It's not fun being stuck in hospital, when we were supposed to be home. 

Walking down the hallways, counting the stars on the walls, running my fingers along the rail to feel something, to connect with reality. I could navigate these halls with a blindfold on. 

I've been writing more, by hand, and the cramps I felt in my hands are subsiding as the muscles remember what it is like to write, and write, and write. I've been working on my book. It's hard to focus, so when I have moments of clarity, I try to dedicate myself to it. I love writing. 

Thursday, March 29, 2012

Changes are Coming...

So, today it happened. My mother found my blog. Now, I never really intended to keep it a secret from either of my parents, but I always knew in the back of my mind that they would really care about what I post. I started this blog what seems like a lifetime ago, and I've kept a very detailed account of everything I've been through. You see, my parents are very private people. I guess, in some ways, I am too. I've always written, from as long as I can remember, and for years and years it was enough to keep a diary, a long, lovingly written letter to myself. Then, somewhere along the lines, it made sense to me to share what I wrote with others. My mom and I had a long heart to heart this evening, about why I write. This place, these virtual pages, give me an arena to express what I'm going through, to people who won't change their view of me for what I write. It was never intended for friends, or for family to read, but over the months it's become common knowledge. My mom knows that I have to write. It's not something I want to do, it's something I need to do. Words, sentences, paragraphs form in my mind, and the only way to get them out is to write them out. It's my equivalent to crying. My mom asked why I couldn't just start up a diary again. It's not the same. I love this blog. It is a part of me, but I miss the anonymity. And, as more people know about it, I worry about the safety of my kids. So, I'm keeping the blog, but I'm making big changes. I'm taking us back to anonymity. If you follow us, and you're friends with me, and you love my kids, I ask that you please respect the change, and only refer to the kids as E, and J. The hubby will henceforth be referred to as DH (which, in online speak means Dear Husband). Other abbreviations you will likely find are MIL (mother-in-law), SIL (sister-in-law), L for my niece. I have made a point not to talk about DH's work, and I will keep it like that. Doctor's names will be abbreviated, and the hospital will just be Children's. I think that's about it. It's hard to get back the privacy we had in the beginning, but I'm going to try a little harder to make my parents happy. Their opinion means a lot to me, and I want for them to be happy, and not worried about what I'm writing. So, we're now And the she, is clearly E, not me, I'm not that narcissistic!


Dr. Dee called. I've been at home since noon. All of E's tests have come back negative, thank goodness. It really is just the bug that is hitting her hard. She said today and tomorrow are likely to be the worst. E refused most of her 10:30am feed, and spat up what she did take in. She is very congested, stuffed up and miserable.
I am going to wait for traffic to clear at the tunnel before I head back in to see her.
I did a lot or writing today. On paper! I haven't in so long and it was amazing to actually write out the words.
I'm feeling better, thanks mostly to DayQuil.
I will let you all know how she is doing when I see her sweet face this evening.


E had a good night. She had one considerable desat when she pushed the mask off her face, and I didn't hear it. You wouldn't believe the level of white noise here, it's crazy! At home, it's impossible to miss the sound of the leak when the mask comes off, but here, it just sounds the same.

She has been doing really well with Pulmicort and frequent suctioning. She just had a treatment about half an hour ago, and finally gave a good cough, followed by four sneezes. I got a lot of goop out using the suction thingy. Wish I had suction at home.

E is rather pitiful today, she's not got a lot of energy to spare, and her sats are hovering in the low 90's.
After a good cough and suction, she can go up to 98, but it doesn't usually last long, before dwindling back down .
I am so ready for my baby girl to feel energetic, bubbly and happy again.  Her favourite use of "Mamamamama" is in protest to the nebulizer. It's almost like she's saying "Excuse me, Mommy, could you please get them to stop this?"

Wednesday, March 28, 2012


I'm sick, and feeling sorry for myself. It's no surprise that we've all come down with E's bug, but it doesn't make it any more pleasant. I apologize for this short post. My brain is feeling hazy, and I cannot seem to find the words I want!

I'm spending the night with her again, and made the poor decision to have coffee only an hour ago. I don't know that I will be able to sleep any time soon.

E was very lethargic this evening, although she was playful when Grandma came to visit. She had her pulmicort, a good suctioning, and is now sleeping peacefully.


I left E this afternoon, following her pulmicort nebules. I've spent the afternoon with my boys, folding laundry, cooking and putting stuff into boxes. I finally detangled the mess that turned out to be 14 necklace chains, and devised a way of storing them, using cardstock, so they don't tangle again. Going through my jewelry, I decided that I want to base the design of E's next bedroom off an old bracelet that was my aunt Vera's. It's gold, with dusty rose gems. Beautiful, and ladylike. I foresee some evening design time tonight!
DH said I could spend the night with E again. He is so great, he completely steps up to the plate when we need him. I am so lucky to have such a giving, caring husband. But, even moreso, my babies are blessed to have him as their father.
We sure have been through the ringer this year, and he has been my rock. I am grateful.


Little Miss woke me up this morning at 6am. I'm glad I decided to stay the night, I actually woke up because she was struggling with rainout in her bipap mask. There's no way they would have been able to tell from out in the nursing station. I think I will stay again tonight.

When she was up, I brought her into my cot, and we snuggled for an hour. She is so lovely. Her big blue eyes, in person, are a hundred times more amazing than in photos, and when they're inches from your own, you can get lost in them.

It's different being here this time. She's mine. I reclaimed her when we came home last week, and nothing is going to make me leave her for as long as I did when she was here before.

Her respiratory rate is high today, as is her heart rate, so they said at rounds they are going to start a Pulmicort nebulizer, to hopefully clear out whatever junk is in her lungs. We have to wait an hour after each feed to put her back on bipap, and they're going to start regular nasal suction. Good times... or something.

It's funny how she perks up when people come in to see her. When it's just us, she's lethargic, she whimpers, she looks at me with the most pitiful of expressions. When someone else comes in, especially someone she's close to, her eyes brighten, and she makes an effort to interact. Silly little belle.

Tuesday, March 27, 2012

The "dream"

J is watching an episode of the Backyardigans, they're dancing Bollywood style, and the storyline makes me giggle. I'm catching up on my emails, while E is napping in her bassinette on the dining room table. The hum of her bipap machine, and the whish of the leak as she exhales allow me to relax.

I look up every few minutes to quickly check the numbers on her oximeter. She's been coughing, and the breathing treatment she was prescribed this morning hasn't made her breathing any easier. 93...95...94... slightly unsettled that her saturation isn't 100, given she is on bipap, but the doctor said she was fine.

I go back to reading, and J asks for help to go to the washroom. He can't unbuckle his pants. The two of us run to the bathroom, and giggle as he manages to make it on time. We high five, pull up his pants, and as we are washing our hands, the oximeter alarms. It has been alarming all day long. I quickly dry off my hands, leave J playing in the hallway, and get to E's bedside. She looks alright, although the monitor registers a heartbeat of 190, and an oxygen saturation level of 90. I don't like 90. I readjust the sensor on her foot, maybe it wasn't picking up properly. Her heart rate comes down quickly, and her oxygen level goes up to 92. I tilt my head, and watch her. She's struggling more than usual to breathe. I make a mental note of this, and start up the Backyardigans again for J.

Minutes later, the oximeter alarms again. Her saturation is at 90. I decide to call our doctor. I get no answer. The beeping has stopped...91... I pace around the living room, trying to sort my thoughts. Should I take her in to Children's? Will they send us home? Will we have to wait for hours? What do I do with J? Maybe the sensor isn't picking up...   I look at the oximeter, it's flashing green all over, the pickup is good. It's not the sensor. The alarms ring again...89... I call 8-1-1, the nursing hotline. I answer some personal questions, give them my phone number, tell the nurse that E is satting low, despite being on bipap. The nurse encourages me to take E to the hospital. I'm in worry mode. I tell J we have to pack up to go, I turn off the television, he isn't happy. I tell him he needs to put on his shoes like a good boy, because his sister is sick.

I go into the kitchen, to take out ice packs for E's growth hormone. I break down, and cry over the counter. How is this happening? What is happening?I am somehow back in the living room, hugging J, telling him that I am just scared about E, he doesn't need to worry about his mama. I call Jason, to tell him I am packing up the kids. I start to panic when I realize I don't have a cable to connect E's bipap to the battery in the car. I decide she will have to be okay.

Her alarms start ringing again, and I look at the oximeter, as I'm rushing about trying to gather what I need...83...That can't be right. I look at her. Panic courses through my veins. She is grey. She is not blue, she is grey, like marble. I pick up the phone and dial 9-1-1, while rubbing her belly to stimulate her. Nothing.

I give them my address, the nature of the emergency. "We're sending everyone we have, they'll be there soon". I immediately hear the sound of sirens. E is unresponsive, she's still grey, her eyes are glazed over, her sats are 83...81...85...84...

"Breathe, baby girl, come on, wake up!" I'm practically yelling at her. Somehow I am also answering the operators questions "No, she doesn't look worse, but she doesn't look good, this isn't good"

J is pulling on my pant pocket. I look down at him, and hold his hand. He says "I don't want E to turn blue, I don't want E to die". Dying is not a possibility. Oh my god, what if she dies? "She's fine sweetie, listen to the sirens, they're coming to help us, they're going to help your sister".

J runs to the door, he lets in the firemen. Three of them descend into the cramped hallway, I feel claustrophobic. My Mommy Mode kicks in. Emotions are put aside, and I tell the firemen exactly what is happening. They administer oxygen. I notice the front door is still open.  Where is J?  "J?! Where are you????".

He is hiding, terrified, in the kitchen. I answer more questions. "Prader-Willi, P-R-A-D-E-R dash W-I-L-L-I". Did J go outside? Where is he, I can't see him.

"J, come here right now!" He cowers in the hallway, I pick him up. "I know it's scary, but look at these big, brave firemen. They're helping your baby. Aren't they nice? " He nods. He is scared.

Jan appears beside me, she's our neighbour. The paramedics are now also in our dining room, I don't know who is who. Someone is asking me about transport to the hospital. "Can't you leave your son with your mom? Your daughter needs you". I tell them "She's not my mom, my mom is in Vancouver". Jan says she will watch J until my mom can pick him up. I call my mom, she`s on her way.

Somehow I am in the ambulance. The sirens, the lights seem surreal. "Why aren't we going to Children's?" I ask. "They know her there, we just came home from there!!!". Policy, they tell me, they have to go to the nearest hospital.

We arrive, and E is taken into the Ambulance Holding area of emergency. And old lady offers to give up her place "in line" for E. They tell her thank-you, but E is likely to be seen first anyway. I am grateful to the lady, I am scared at our priority level. I have to give someone her information, her carecard, our address. E is moved to a bed in emergency. They tell me they will do chest x-rays and send us to Children's. Infant transport is on their way.

I tell too many individual people what happened at home. Why can't I just tell one person? I don't remember everything. I don't know what's going on? Why won't my brain work?

E is on 10 liters of oxygen, she is lethargic, and her sats don't go above 95. Probable pneumonia, I am told. Chest x-rays are done. ITT arrives. They know me, I know them, I can't believe this is happening.

We walk through emergency, on the way to the ambulance. I don't look at anyone. I can feel the looks of concern, I don't need to see them.

The ambulance ride is a blur. More questions. I obsessively watch E's saturation monitor. 80...88...89...87...She is on oxygen, why isn't it working??

We arrive at Children's.  They unload E, and we walk through emergency. He stops to make sure we are going straight to ICU. I make the mistake of looking at people, their faces show pity. My heart skips a beat, the panic starts to take over.

We walk through double doors to the hallway that leads to the ICU. I can't be here, I can't be here. We aren't supposed to be here. We're supposed to be at home.

The gold stars on the walls, the smells, I refocus. E needs me. She is wheeled in to room 21. I know our nurse. I know everyone. I answer questions, and repeat the same story for the hundredth time. They set her up, keep blow-by oxygen near her face, do swabs, run a npw test. E perks up, she looks fine, her saturation levels normalize. What the hell?

She is well for an hour, she looks around, she flirts, she laughs, she coughs. She gets tired, and her sats fall. She's on oxygen and bipap. The doctor comes by, "E's heart looks enlarged, but it might be a bad x-ray"  Thanks a lot, small town hospital, for the stress you're giving me. "E has a heart murmur" that's new, what is happening? Why is she having all this?

Jason arrives. He makes me eat. I haven't eaten all day. I fall asleep shortly after E does, and wake only when they do an x-ray in the night.

In the morning, the doctor comes by. She says lots of things that scare me. Growth Hormone Related Obstruction, Seizures, Heart Issues... No, no, and no thank you, this isn't happening. I tell her that E just missed having people around. She laughs, I laugh. How am I laughing? I feel sick.

Time passes, I don't know what happens. The doctor comes back in "Human metapneumovirus... it's a nasty bug, but it fits all her symptoms. It is going around the ward. It's probably nothing else" She leaves.

I breathe. It feels like I wake up.


I'm back! I went home with the boys this afternoon, took a shower, made them a good meal, and then packed up what I need for my overnight, some extra clothes for E, and her favourite toys, and came back to the hospital.

She's still doing alright. She's playing with her fairy bear, and is giggling to herself. She sounds hoarse, and wheezy, but I know that's normal. It's almost time for her next feed, then a cuddle, and then to bed with her.

I have a lot of writing stuck in my head, I need to get it out before I start getting confused :) I want to write out exactly what I remember of yesterday, since it keeps playing over and over in my mind. I also have something I call "E's Alphabet", which I might not post right away, because I want to put photos with it, we'll see.

I plan on putting on the tv to something mindless, and writing until I'm too tired to stay awake.

I had over a thousand visits to my blog today. E loves you all for caring so much.

Everyone Loves Little Angels

E spiked a fever, and is so cranky, but a little light just shone on our family. Someone knocked on our door, and offered J and E gift bags, donated by the Everyone Loves Little Angels Foundation. They each received a beautiful puppet, J a macaw (he's totally into birds right now, it's great!!) and E got a cute little fairy bear!
There were little quilts in the bags, too, which will keep E warm in this chilly room. What an amazing organization. We are grateful.


I have had quite a few of these "multiple posts a day" days. They're not usually very fun.

Dr. Dee was just in, to tell us that the heart stuff all came back completely normal. Big sigh of relief. The heart murmur is because of the virus, it should go away when she's better.

They've decided to "sit on" us for a week. Ugh. Some of the other kids in here who have the same thing have stopped breathing, and they don't want to send us home to have to come back via ambulance again. A week should be long enough to clear everything up.

I'm not staying here for a week.

It's crazy how this virus attacks people so differently. If it got DH, or J, or I, we'd just have a simple cold. For E, it affects all of her.

I'll be happy when her sats return to normal, and she's back to herself again.

Hello People!

I checked, my blog has had 823 visits today. That's a lot of people checking in on our sweet little peanut. You have no idea how much it means to us to have such a supportive network of people offering up prayers, sending us positive thoughts, and healing energy.

Thank you for loving our baby girl.


Ellie had her echocardiogram, a bottle, and now she`s napping. On bipap, her sats are still low, which is frustrating, but par for the course. We`re waiting on a consult from cardiology, as soon as they get the results of the echo.

Not too sure what to do with ourselves now. The boys are here, but it's not good for Jakob to be here all day. I think we might go home for the afternoon so that I can shower, then I will come back later on, and likely spend the night with her. The room is quiet, I can sleep decently, and I really, really don't want to be away from Ellie, it feels very wrong. Also, since Ellie is in isolation, everyone suits up in gowns, gloves and masks, and she really doesn't like not being able to see people's faces! I don't have to wear any of that, so I'm a "real" person, and her only option for a playmate, since the volunteers probably won't come in with her so under the weather.

It's a bug! It's a bug! It's a buuuuuug!!!

The npw came back, Ellie has human metapneumovirus, the nasty bug that's been circulating the ICU. Likely she caught it before we went home, and that is what caused her problems yesterday. But, they're still going to check and see if anything else is going on. Dr. D seemed happy with the results, since it really explains everything.

Human Metapneumovirus

What is human metapneumovirus?

Human metapneumovirus (hMPV) is a recently identified member of a family of viruses that also includes respiratory syncytial virus and parainfluenza virus (Ellie had paraflu in December, and gets RSV vaccines monthly) . Although identified in 2001 by investigators from the Netherlands, data suggest this is a common virus that has been responsible for respiratory illnesses for at least 50 years worldwide. Human metapneumovirus can cause upper and lower respiratory tract infections in patients of all ages but respiratory illnesses most often occur in young children or older adults.

How is human metapneumovirus transmitted?

Spread of the virus is most likely to occur by direct or close contact with the respiratory secretions of infected persons or by contact with objects and surfaces contaminated by their secretions.

What are the symptoms of human metapneumovirus?

Most persons with hMPV infection have mild symptoms including cough, runny nose or nasal congestion, sore throat and fever. More severe illness, with wheezing, difficulty breathing, hoarseness, cough, pneumonia, and in adults, aggravation of asthma, also has been reported. In children younger than 1 year of age, the elderly and persons who have weak immune systems, hMPV can cause more serious respiratory illness.

When is human metapneumovirus most common?

It is most common in late winter and early spring in the United States, however, one summer outbreak of hMPV respiratory illnesses in residents and staff of a long-term care facility in the United States has been reported.

What is the incubation period for human metapneumovirus?

It is believed most persons who develop illness will do so three to five days after being exposed to this virus.

Is there immunity to human metapneumovirus?

Limited data suggests that reinfection with hMPV can occur. It is believed most children become infected early in life and adult infections represent persons becoming infected with hMPV again. Repeated infection appears to result in milder illness although serious disease is a risk for patients who are immunocompromised.

How is human metapneumovirus diagnosed?

Human metapneumovirus testing is not readily available. At this time, research laboratories and a limited number of commercial laboratories perform testing for this virus.

Can human metapneumovirus be treated?

Supportive treatment for patients varies with the severity of the illness but generally treatment consists of fever reducers, antihistamines, breathing treatments and other means of providing comfort to the patient until the illness resolves.

How can human metapneumovirus be prevented?

Control measures used for other respiratory illnesses should be emphasized: covering the mouth and nose with a tissue when coughing or sneezing, or, coughing or sneezing into the upper sleeve rather than the hands, prompt disposal of used tissues and proper handwashing.

Can any other species become infected?

Non-human primates can become infected with human metapneumovirus; humans are their likely source of infection.

This is what it looks like!


I feel like a zombie. I went up to Second Cup, got a breakfast sandwich I could barely eat, and a large coffee. One of my favourite nurses was in the lineup, I don't think I registered anything until she started talking to me, and I zoned back into reality.

I caught Dr. D on my way back in. We talked. Ellie's issue yesterday could have been caused by a great many things. At the top of her worry list: seizure, so neurology is coming; heart, so they're doing another echo-cardiogram; and growth-hormone related airway obstruction. Three big ones. I hope it's none of them. I hope it's just a bug. But, if it's just a bug, is this going to happen every time she gets sick?

We're in "jail" as Dr. D put it, for 48-72 hours. She knows Ellie so well, that I trust her completely. She knows that kids have the ability to override their sickness when they're in a stimulating environment, and here, in Ellie's home away from home, she is definitely used to stimulation, lots of it. As Dr. D pointed out, Ellie does a 4 day great streak, followed by a day of feeling off, and then back to feeling great again. Today is still an off day, so she wants to see what happens tomorrow, and the next day.

Jason is taking work off today, and likely tomorrow as well.

I don't normally cry. I'm normally very good at controlling that, since crying doesn't make me feel better. I haven't been able to contain my emotions. I cried in the lunch room, I cried in the hallway, I cried in the bathroom. I can't get the image of her, all ashen grey and unresponsive, out of my head.


Ellie is back on bipap, having a nap. We are waiting on the results of the npw (nasopharyngal wash) test, to see if she has a bug. I know there is concern about her airway, and Dr. D is waiting until she's done rounds to come talk to me.

One of Ellie's nurses from before came by to visit. She had been watching Ellie on the monitors before she came in, when she was desatting, and fussy. Then she came in, and E's levels all normalized. What a drama queen! We joked that she has reverse White Coat Syndrome!

I am going to go grab breakfast at Second Cup. I was going to have breakfast this morning at Second Cup anyway. Looks like they are going to postpone the TSH testing they were originally going to do, and wait until she's healthy again to give her last dose of Synagis. They have until March 31st to give it, so hopefully she's back to herself by then.


Ellie had her morning feed, which was sort of alright. She is satting a lot lower now, post-feed, than she was before. She's cranky, glassy-eyed, and tired. Her heart rate was high for about half and hour after the feed, but it's mostly come back down.

Still waiting on rounds.

I am starving.

Good morning

Praying they find out what causes her issues yesterday so that we can go home


Ellie had a decent night, satting around 95 throughout the night. The just did a bedside X-ray, hoping to get a better picture than what they got at delta.
I am still trying to process everything from yesterday, but something the paramedic said stuck with me. If it had been cyanosis, that the desat was related to poor oxygenation due to lung issues, Ellie would have been blue. She was grey... She looked like a statue. Thinking about her looking like that still sends panic coursing through veins.
The paramedic said grey is usually associated with infection or an obstruction. One of the nurses wondered if she might have had what they call a plug.
I don't know. "Respect the airway", is what Dr. Dee always says. I'm ready for rounds, ready to know what happened and why.
Sent from my iPod

Monday, March 26, 2012



Ellie is trying to sleep, but she's whimpering away.

Apparently, according to the xrays, her heart looks enlarged, and she's got a murmur. Ellie's never had cardiac issues before. Her lungs didn't look too bad, per the resident, but they want to see what Dr. Dee thinks in the morning, and will start antibiotics in the morning, if they need to. By then, they'll have the results of the awful nose suction test, that determines what's going on in Ellie's mucous. Could be they will retake the xrays, to make sure they show what they show.

I am beyond exhausted. What an emotional day.


ITT came to get us at Delta Hospital, and brought us back to Children's. The ITT guys were the same who did Ellie's first transport from Children's to St. Paul's, they remembered me. Ellie's ride here was fine, although she did need the O2 the whole ride, and desatted to the low 80s at one point.

We were immediately admitted to the ICU, in bed 21 this time, an isolation room. The doctor is going over the xrays with someone, and I think they're talking about starting antibiotics.

I talked to Jakob. He is devastated. I am so worried about him, today was really traumatic for him. I hope he is okay.

I am spending the night here, the room is huge and I have a bed. Jason brought me dinner, which was awesome, I don't think I ate anything today.

Ellie just had a pedialyte, and is resting before she can start her bipap again. I hope the night goes well, and they decide to send us home soon.


Today has been the scariest day of my life. This afternnon, ellie was increasingly lethargic, and struggling to breathe. Awake, on bipap, she was satting at 85 and was grey. I called 911. Fire came first, administered O2, and tried to rouse her. She pinked up a bit. Paramedics arrived, and my neighbour Jan showed up. She took a terrified Jakob to her house. He saw me hysterical on the phone, watched as a bunch of men decended on the house, and was so brave.
Paramedics are bound to go to the nearest hospital. We came to Delta. She's on 10l O2, has had a chest xray and two nebulizer treatments. Her sats refuse to go above 95. RT said one lung has diminished intake, the other is very crackly. Likely aspiration pnuemonia. From Thursday...
We are waiting for ITT to take us back to Children's ICU. It is a good thing we came here first, there was a crash in the tunnel.
I am battered. Finding strength I don't know where!
ITT is just around the corner. 5 minutes til I get to repeat, for the dozenth time, my shitty afternoon.
Thank you so much for keeping us in your prayers.
So far, so good. Ellie seems to go tachycardic after feeds, which is bizarre and unusal for her. Her sats have improved since the neb treatment. She's still wheezy/squeaky, and pretty lethargic, and I've noticed an increase in her coughing which I believe is common.
I sent Jason off to work, so am now home with both kiddos.
Here's hoping to an uneventful afternoon.
Jakob is also feeling under the weather.
I took Ellie in to the doctor, and it was the most stressful two minute drive of my life. The alarm wouldn't stop ringing! She kept ringing in the waiting room, and then as soon as we were in the patient room, all her levels went back to normal.

I was worried the doctor would think I was a lunatic! But, then Ellie coughed, and turned purple while he was listening to her, so at least she helped herself.

He prescribed a Ventolin nebulizer, four times a day until her breathing clears up. She sounded wheezy.

I had to go, pick up the Ventolin, and then drive all over on the hunt for a nebulizer! I finally found one, at the third pharmacy I tried.  So, now we're home, and she's had her first treatment. I'm a little on edge with the potential side effects, but I think we're in the clear.
Ugh... ellie seems to be hetting worse, not better, so I made an appointment with our gp to have him listen to her chest. After her feed this morning, she had a very hard time dealing with her secretions, her respiratory rate was high, she was tachycardic and setting off that alarm, and her sats were setting alarms off, too. It's been 1.5hours since her feed, and her heart rate has come down, although it is still about 30bpm higher than normal. Her sats are 86-94.
Jason asked if he should take the day off work, and I don't know. I am so scared they're going to send us back to Children's, and that she might get admitted.
She is way more sick than she was when I took her in December.
I guess we will see what the doctor thinks :(

Sunday, March 25, 2012

Mini Session with Bella Photography! (Sneak Preview)

Today, I took Ellie to my amazing, talented friend Ali's store, for a mini photo session. Ali runs Buttercups Children's Boutique, in Ladner, as well as her own photography company, Bella Photography. She came to the hospital when Ellie was a couple days old, to do newborn/preemie shots, and I am so happy to have worked with her again today.
Here are a couple from our first shoot:
So incredibly small...

Here she was 2lbs12oz, 15.5"

And from today:

At 11 months, 13lbs, and 23.25"

Saturday, March 24, 2012

Jason is working tonight, he left just past noon. This is the first time this whole year that I've been at home with both my kids, alone!

I decided we would go out for a walk, up to London Drugs, to pick up one of Ellie's prescriptions that's ready. I put Ellie (who has been asleep all day long, aside from feeds) in the Ergo, Jakob in the jogging stroller, left everything but my debit card at home, and went out in the glorious sunshine.

What a beautiful day! On our way, Jakob counted birds nests, we stopped to watch some bald eagles perched on the highest branch of a tree, right above our heads. We looked at the flowers, passed half a dozen dogs. We got to the store, I bought a couple things, then we headed over to Cobb's bread for a treat. I know, I know... bad.

Then, we walked back home. Jakob is presently sitting at the window, watching our neighbours pour concrete on their patio, while he nibbles on his chocolate hot cross bun! Ellie is sleeping, satting at 94 on her bipap. She could use some extra "feel better" vibes!

I took some photos of our beautiful backyard trees this afternoon, but will have to post them later this evening, if Jakob ever goes to bed!

Friday, March 23, 2012

Wee thing really isn't feeling well. She's whiney, and she doesn't want to sleep, eventhough it's 10:30pm, and way past her bedtime. She won't keep her mask on, she keeps kicking off her sat probe, and it's Jason's turn to watch her until the nurse gets here. He is stressed out beyond belief, but if he can't figure it out on his own, I'll never feel comfortable leaving the kids with him for a night off!

Men are funny under pressure. At least, my man is funny under kid pressure. He just can't deal!


My stomach is growling. I am so eager for dinner to be ready! Also, very excited to see how it turned out. I very rarely make the same thing twice, mainly because I love to try new recipes! I am awful at sticking to the directions!

Tonight, I chose two recipes from Pinterest for my inspiration. The first is Baked Fried Chicken. As I said, awful at sticking to recipes, so I changed things up a little with my spices, and I used whole wheat flour, and instead of milk, I used up the last of the buttermilk in my fridge! Don't think that by baking, it makes it any more healthy. A waistline friendly recipe this is not! It calls for "frying" the chicken (I used turkey), in a quarter cup of butter, in the oven. Yumdiddlydum! I think if I make this again, I will bake the tenders in a corningware dish, instead of cookie sheet. I had trouble flipping them over, and most of the pieces lost their flour coating in the process, on one side. They tasted pretty good, but weren't quite crispy enough for my liking. That said, they're all gone!


The second recipe, is Slow-Cooker Mac n Cheese. I didn't use macaroni, I added garlic, onion, and cherry tomatoes, AND a small container (maybe 2 cups?) of cottage cheese. Didn't have the cheese they called for, so I used marble cheddar. Didn't have bread crumbs, so no bread crumbs on top. It was HEAVENLY.  Will make it again for SURE.

Ha, and I completely forgot the salad, so we'll have to catch up on veggies tomorrow!

Parents of Preemies Day 2012

Today is Parents of Preemies Day!

The past year has been amazing. At this time, last year, I was at my parents, a week away from being admitted to BC Women's Hospital for the duration of my pregnancy. You all know, Ellie is a miracle. The most amazing little girl I have ever met (yes, I am biased), but she is full of potential, and overflowing with love.

I love you my tiny peanut:

Ellie has a bad cough, and we've been keeping her on her sats monitor all day, because she's satting low, although she's in a great mood! I picked up another nasal aspirator, since I couldn't find the pieces to the one we used when Jakob was a baby.

We just went for a nice long, beautiful walk, in the glorious sunshine. Ellie in her pram, Jakob in the stroller. Could not have asked for a more wonderful day for Ellie's first walk at home this year!

We went to the park, the grocery story, the pharmacy, the bank. People are always attracted to our pram, since you can't buy them here. Today was the first time we've taken her out, where people didn't make a comment about her size, or her being "brand new". :)

I just installed my diaper sprayer, to handle Ellie's real baby poops. I LOVE our cloth diapers, but I think I need a few more FuzziBunz, since they're not quite so wide in the crotch, and she can be more mobile.

Going to make baked fried chicken, and macaroni and cheese, with salad for dinner. Going to get started, while Jason has the kids, and there is peace in the house.
Ellie's night ended up being fine. She satted low for her, but not enough to set off the alarms. She was up at 830 this morning which is an hour later than her hospital schedule, but works better for us
Ellie has a cough today, so definitely keeping an eye on her!
She is amazed by everything.
In the afternoon, Jason pressure washed our back deck. Ellie sat by the window watching intently' looking at the trees, at the hose spraying water, at Jay making faces at her through the glass.
Last night, we had a bath together and she was in awe of the water. She concentrated so hard on the sensations, on the waves, she didn't want to get out!!
She's seeing everything for the first time, before she slept through it all, and in the hospital there was nothing to see! It is amazing watching her take it all in, watching her process everything.

Thursday, March 22, 2012

Today, while I left her for A minute to get a drink, Ellie threw up, choked and aspirated. Argh. She has been satting low ever since (92-93) and her alarm is set to ring at 92. On bipap she is satting around 95, when she usually sats at 100 on bipap. I hope it clears up and doesn't cause a problem. The nurse knows to wake us up of she sets of her alarm more than three times in two hours. I really hope she doesn't!!! Fingers crossed the night goes well, I'm having a hard time relaxing because I'm a little worried...
Do you ever wonder how things happen? Or why they happen?

We made the trek, on Sunday, to the Island to place flowers on my grandmother's grave, in celebration of her birthday. At that point, we thought it would still be a couple weeks until Ellie would come home. All of a sudden, everything came together, and Ellie came home on my grandmother's birthday.

We have all our hours covered for nursing, but they made it very clear that it's probable we won't always get our nursing hours covered, because they don't have back-ups waiting in the wings, in case one doesn't show up. Today, we discovered that our new neighbour, directly beside us, is a NICU nurse, on maternity leave, who offered to be our backup.

I remember counting the days that Ellie was in the NICU, and the days she spent at home after. When we surpassed 63 days, I felt like she was really mine. This time, Ellie was in the ICU for 86 days. 86 days from yesterday takes us to her original due date, June 15th.

I have a seven cup winning streak at Tim Horton's... Jason has never won!
Today has been incredible. Absolutely perfect.

This morning, I woke up at 6:45am, put on my housecoat and my slippers, and went downstairs to relieve the nurse. E had a great night, although she did need a fair number of mask readjustments. The nurse left, and as E was still sleeping, I made myself a cup of tea, and sat at the dining table, staring at her. Finally, when it didn't seem like she was going to wake up, I curled up on the couch, and fell asleep. E woke at 8:30am, right around the same time as J, and the four of us huddled together in the living room, basking in the feeling of togetherness. J was so indescribably happy to have us all together, he asked to hold E, to feed her, to sit beside her and play with her. He is an amazing big brother.

We're conginsant of the fact that he will struggle when he realises that he is no longer an "only child", but we're hoping he is confindant in our love for him, and accepts quickly that Ellie is here to stay. When times get tough with him, I remind myself of how upset he was to leave her in the hospital when she was first admitted. Having her home will be our new normal.

Ellie was exceptionally tired today. I assume yesterday wiped out her reserves, as she has done little but sleep, eat, smile, and sleep again. Presently, she's tucked into my sweatshirt, smiling, and sleeping. I know she should be on bipap, but I'm as happy as she is to be close to her.

We had a steady stream of visitors today, which I like. I have no qualms about asking people to wash their hands before touching her, and I think I might become one of those parents, who hang "Do not touch my baby" signs on their stollers and car seats! We are NOT going back to the hospital!

Jakob is having a special sleepover at my mother's, Jason is pressure washing the patio and carport. Ellie's just eaten, had her shot for the day, and we have nothing to do but snuggle and relax.
We're cognisant of the fact that he will struggle when he realizes that he is no longer an "only child", but we're hoping he is confidant in our love for him, and accepts quickly that E is here to stay. When times get tough with him, I remind myself of how upset he was to leave her in the hospital when she was first admitted. Having her home will be our new normal.

E was exceptionally tired today. I assume yesterday wiped out her reserves, as she has done little but sleep, eat, smile, and sleep again. Presently, she's tucked into my sweatshirt, smiling, and sleeping. I know she should be on bipap, but I'm as happy as she is to be close to her.

We had a steady stream of visitors today, which I like. I have no qualms about asking people to wash their hands before touching her, and I think I might become one of those parents, who hang "Do not touch my baby" signs on their strollers and car seats! We are NOT going back to the hospital!

J is having a special sleepover at my mother's, Jason is pressure washing the patio and carport. E's just eaten, had her shot for the day, and we have nothing to do but snuggle and relax.

I put together a before and after of E, on admission day, and on discharge day. We had to adjust her car seat straps by two notches, she's grown so much!

Wednesday, March 21, 2012

Today, on what would have been my grandmother's 92nd birthday, the sun shone, the birds sang, and my daughter had her first nap on our dining table, at home.

Dining table? It's the only place where Ellie can be sort of at waist level, which saves us our backs, and also where we can put all her equipment. She's sleeping in the bassinette of our traditional pram. She will fit it until she's about three years old, but I hope that she doesn't need to sleep there for that long.

Nurses wanted to be able to keep a light on, and not worry about interupting our sleep, or Jakob's. Tonight, at 11pm, we meet our first nurse. She's one of three assigned to Ellie's care.

I have a whole post I want to write about our experience with the ICU, and leaving. But for now, I hope you'll understand, I'm going to sit and stare at my baby girl!

Tuesday, March 20, 2012

Today was a mixed bag of emotions for me. We spent the early afternoon packing up all of E's clothes, and toys. We filled two moving boxes, and five bags with all her stuff! When she was ready for her afternoon nap, Jason, Jakob and I headed over to my mom's house for tea and a snack.

When we came back, for her 4:30pm feed, we walked in to a surprise party! They'd bought a cake, which said Congratulations Ellie and Family. We also got a card, signed by everyone working today, and both kids got incredibly spoiled with wrapped presents! I will post more photos in a few days, when I've had a chance to process all the images on my camera.

Ellie had her first taste of cake. It provided all of us with a big laugh. Laughing helped, because I was so overwhelmed by the generosity of everyone. So many people stopped by to say goodbye to Ellie today. People I don't remember meeting. People who are genuinely sad to see her leave, but happy she's going home. I can't tell you how many times I heard "What are we going to do now? Who are we going to play with on our breaks? Who are we going to cuddle when we're feeling down?"

The love they all feel for our sweet little girl is amazing, incredible, everything. We are so, so grateful.

One more day

We came in to the hospital today, and were greeted by a banner that reads "Congratulations on Going Home Ellie & Family!". I almost cried.

Tonight, I'm baking mini cupcakes. As many as I can make. Iced with rainbow buttercream icing. I also want to get a card, and print out a photo for their patient board.

I can't believe this is real...

Monday, March 19, 2012


It's official! Ellie is coming HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Nursing hours have been filled, doctors orders have been sent off, and discharge papers are being completed. We are going home on Wednesday night. I am beyond excited!

At the same time, I'm completely terrified. Ellie is so different from when she was last at home, and she's become awfully accustomed to be constantly played with, cuddled, and generally loved upon. Jakob is not used to sharing my attention while he's at home. We're all going to have to adjust to having her home, but this is amazing. Amazing to think that in two sleeps from now, the four of us will finally sleep under the same roof again (plus a nurse, which will be interesting...)

I had to say goodbye to one of my favourite nurses today. She won't be there tomorrow or Wednesday. That made my heart ache. I love them, all the staff that looks after Ellie, they've really become like family.

Sunday, March 18, 2012


Today, Jason agreed to spend the day with Ellie, so that I could go with Jakob, my brother and mother to Vancouver Island to put flowers on my grandparents' grave. It was an amazing, beautiful, fun day, and as much as I'm sad I didn't see my little girl, I am so glad I went! We took the 11am ferry to the island, drove to the graveyard, then into Victoria, where we stayed until it was time to catch the 6pm sailing home. I loved spending time with Jakob, but enjoyed spending time with my little brother even more, if that's possible!

My brother

Jakob checking out some willow branches

Jakob and I

I love my brother, he's the best!!

He's also the best uncle!

Sinfully delicious ice cream float!

Sharing = less guilt!

Saturday, March 17, 2012

It's 4:30pm on a sunny Saturday afternoon. Jakob and I are devouring a French yogurt cake, which Jakob made 95% on his own. We're watching Rio. I am drinking my coffee. Today, I did six loads of laundry, folded them and put them away. I decluttered all three bathrooms, cleaned the kitchen, went to the farm to buy eggs, went grocery shopping, and came home to teach Jakob how to crack eggs, and make cake. While he was doing his baking, I prepped the batter for deeeeelicious buttermilk pancakes we will have tomorrow morning, and checked on the ribs I've had cooking since this morning, and got my kale chips ready for baking.

I have done so much today, and it's all because Jakob is sick. Mr. Snot-nosed Goopy-Eye Crankypants is feeling very much under the weather, and with Jason working, my MIL out of town, and my mother with a prior engagement, I can't go to the hospital today. Today I have reclaimed no less than five hours out of the day, and I feel it!

The downside, and it's a very major one, I don't get to have my baby girl.

The cake recipe is SOOOO easy, hence my letting Jakob do all the work.

Basic Mix Ingredients
* 1 x Individually sized Yogurt Pot (YP)
* 2 x YP Sugar
* 3 x Eggs
* 1tsp baking powder
* 3 x YP Plain flour
* 2/3 YP Vegetable Oil
* take a large mixing bowl and mix together all the ingredients
* pour mixture into a loaf pan
* bake in an oven at 180C for about 30 mins

As for the Kale Chips, which are all in my belly, two minutes after coming out of the oven, they're even easier!
Wash, remove the stem, and break into 1.5" pieces. Toss in olive oil, spread on two baking sheets, sprinkle with coarse salt, and bake at 400F for 12-15minutes.

Friday, March 16, 2012

On Sunday, Ellie will have spent 150 days in hospital, all by herself. I remember when we hit 100 days between the two of us combined. That seemed such a huge number, and now that she's at 150, I can't help but feel defeated.

I try so hard to be positive, to be optimistic. I know that Ellie's time in hospital is coming to an end, and hopefully she won't have to go back for any more than the occasional sleep study. Despite that, I've lost track of the number of times they've said she's all ready to go home, and then we have a set back.

I try to remember how very lucky we are that Ellie isn't sick. We are so lucky. I feel pathetic complaining about our situation, when we have friends whose children are very ill, whose futures are uncertain.

I spent two beautiful hours with Ellie this afternoon. I fed her, changed her, and we lay on the floor and giggled. She is incredible. I miss her so very much.

Jason is working the day shift today, and this morning Jakob and I got up early to drive my inlaws to the airport. Since we were out already, I decided to stop at the golden arches to spend some leisurely time drinking a coffee, while Jakob burns off energy chasing kids around the playroom.
Thank goodness for playrooms. There are two dads on duty, and hanging out at the back are a bunch of moms having a typical mom bitching session. One mom was just talking about how big her daughter was at birth... bigger than Ellie is NOW. Holy!
In typical fashion, I am sitting at the front of the room, minding my own business. Some times I wish I weren't so shy. I'm not really timid, I just don't want to get into all the details of Ellie with strangers who don't care.
I wish it were easier to make friends.

Wednesday, March 14, 2012


Ellie was a grump today, way more so than normal, considering she nearly never cries. I had a peek inside her mouth, and she's got two teeth on the way! Both are on the bottom, and it's crazy, because there was no sign of any teeth just a couple days ago.

Wow. She's growing up!!

Tuesday, March 13, 2012


I don't know how I feel about this, since I'm not really sure what I believe... I have always believed in Heaven, in old souls, in angels. Lately, it seems Ellie has a play mate. One that we can't see, but she can.

Today, I was watching her play with my mom. She locked on to something, nothing I could see, and started giggling. She would get so serious, while tracking something invisible, and then would laugh. My mom and I both watched her, in awe, as she giggled, and shrieked in delight.

I've heard of the ICU and NICU angels. The thought gives me the heeby-geebies, but, to see Ellie so happy at something, it`s hard not to notice.

Jakob and Joker

About a week ago, at the hospital, there was the Teddy Bear Clinic. Jakob went with the Child Life coordinator, Joanne. He had the most amazing day, and today, I found a cd with photos left for me at Ellie's bedside:

Getting Joker's record of care


He's "this" tall!

He's three years old.

Checking him out

Listening closely

Weighing him

Explaining Joker's problem (a broken arm)


Discovering how a microscope works

Explaining how casts work

Dr. Jakob in action, getting messy.