Tuesday, January 31, 2012

Today was fine. Apparently, I made a huge deal about nothing, because I have one of the best behaved little boys on the planet.

This morning, we woke up with enough time to get dressed, fed and out the door in time to get a prime parking spot. I would have walked, except it was rather blustery out, and it was party day at preschool. I love, love Jakob's preschool. They learn so much, and he genuinely likes his friends and his teachers. He has a big heart.

After the party, I went home, and back to bed for an hour. My mother-in-law, and SIL have the flu, and I've been feeling rather run down this week. A little extra sleep is my best defense against a bug. I woke up, put my face on, did my hair, and picked little Man up. We came back home, woke up Jason, had lunch (Bean and Salsa Soup with Alphabet noodles!), then headed out the door to see our Ellie.

I got there just in time for her 1:30pm feed. She does so well with her feeds now, it's amazing. After that, she played on her floor mat, impressing her daddy by rolling as fast as she could from one side, to the other. She thinks she is hilarious. She is right.

The time came for her gh shot, and I was a little apprehensive about Jason helping out with that. He's not the best with needles, and has an aggressive vaso-vagal response (ie, it doesn't take much for him to pass out). He did PHENOMENALLY! Seriously, Dad of the Year Award worthy performance. I was impressed. I think we are going to try to team up for shot time as often as possible, she was so happy to be cuddled by daddy afterward.

Jason had to go to work, so I set up a movie for Jakob, and Ellie and I had a little snuggle time. When she woke up, Ellie played on the floor mat again, and I wish I'd had my video camera with me!! She was so excited that Jakob was paying attention to her (he was between videos), that while on her belly, she held her head up, looking at him, for FIVE MINUTES STRAIGHT. I kid you not, it was amazing. She drew a crowd of observers, probably because I was going bezerk with excitement. To top that off, because her arm happened to be in the right position, she rolled from belly to back. Ah, big day!

I think it's going to be interesting trying to differentiate between what she would have done naturally, versus what progress can eventually be attributed to the growth hormone. We've already seen such an increase in activity, in strength, in milestones, I wonder what the gh is going to help with! We'll see. I forgot to ask Dr. Dee about starting solid food.

Jakob and I came home around 6:30pm, and had a healthy, tiny dishes meal. We had hard boiled eggs with cut up toast, cucumber sticks with peanut sauce, apples with cheddar cheese, mandarin orange pieces with cottage cheese, and yogurt. He loved the selection of little dishes and the variety, although nothing was particularly exciting.

After dinner, we played the laundry sorting game. Ha, more like child labour! My laundry situation is bordering on catastrophic, and we're whipping it into shape. He sorted all the clothes into dark, light, and bright bins. Meanwhile, I cleaned the kitchen.

Now it's bath-time, and after that, I hope he goes nicely to bed. I plan to fold the laundry that's presently in the dryer, then I'm going to have a glass of wine, read a book, and consider this a great day.

Apparently, I can do this on my own. Thank you, random bucket of extra strength!
Tomorrow is the first day I have to handle breakfast, preschool, lunch, nap, visit Ellie, dinner and bed all on my own. It probably sound ridiculous to most moms of two or more, but I find that sort of day extremely long, tiring and stressful. Taking Jake to the hospital when he is tired isn't pleasant for anyone, but, I have to go. I have to give her the growth hormone every day. Me. If the nurses did, every single one would need to be trained, and that isn't about to happen.
I should have gone to bed early, but I got wrapped up in Bones. Ah, simple drama, unrequited sexual tension, it is a good time. And, it is me time. Jakob didn't want to be alone this evening, as he was going to bed, so I sat with him for an hour. He is so precious. I can't believe he is so big, he is such a BOY. Where did my little baby go?
Tomorrow will be fine, I know I will get through it. Tuesdays were easy when my mom was here. I am spoiled, and got used to all the help.
Time to suck it up! Sorry for whining.

Monday, January 30, 2012

I don't know what's wrong with me today, I just feel sad.

Yesterday, I reconnected with a friend I made at the beginning of my pregnancy complications. Her twins were born a week before Ellie, and one of them had a bunch of problems. For some reason, I thought they had gone home, but when I saw they were having a Helping Hearts photo session at the hospital, and got in touch with her, I found out they've never been home. Never.

She has one healthy baby, and one baby who has had to face a huge host of health problems. Nine months and counting, she is an amazing, incredible mother. I thought about them often, walking in to see Ellie, thought about how the twins were doing, how she was doing. I feel awful knowing that she was still right behind those NICU walls, still living the life of a NICU parent, and I wasn't around to offer support. I couldn't imagine being miles from home, with no family here, no real support, and being stuck in hospital, seemingly forever. There's no way I could have known, but I have guilt that I wasn't a better friend.

I am sad that my mom has gone home. Very, very sad. My mother has been the single most incredible support person in this journey. She would take Jakob, often, and when she didn't have him, she would go see Ellie. Even though it's only 8 weeks until she is back again, I already feel lonely. I already feel overwhelmed. I don't know how I'm going to manage the back and forth with Jakob every.single.day.

I have a bunch, literally a page full of names, of people who have offered their help. But, they're not family, there's something about my personality that makes asking for help, even from people who are more than willing, even wanting to help, make me feel like a failure. The only time I don't feel like that, is with my mom.

Even when I leave Jakob with Jason, his father, I feel guilty. I must ask a thousand times before I leave them together, if it's okay for me to go be with Ellie.

I just want Ellie to come home. But, I don't want to rush things, I want to be sure her airway is okay, I want to make sure everything is safe for her.
Today was the big day. Ellie got her first injection of growth hormone. I was so excited, and it was so much easier than I had anticipated. Wee girl was a champ, and it was over before she could blink :)

I am so glad we have finally started. Hoping to see positive results, and to not have any bad reaction to the hormones, or any worsening to her apnea. I want my baby to get strong, develop her airway, and outgrow the need for her BiPAP.

I'm not really in a writing zone right now, there's too much on my mind. My mom went back to London today, and I'm sad about that, plus it was a long day at the hospital with Jakob.

I'll post tonight when I get my second wind.

Sunday, January 29, 2012

Photo Update

Siblings Hanging Out

Her hair sure is coming in... ginger?

Mat play time

Tummy Time - major dislike on her part

love <3

More tummy time, with an audience

In her elephant mask, with her elephant, my Ellie <3

Go, Canucks, Go!

So serious...

Cutie Patootie!

Saturday, January 28, 2012

Jakob spent the day with my mother-in-law. I got myself ready, and headed in to see Ellie. I realized, on my way in, that I was alone, and finally had the time to stop and donate blood. So, I made a short stopover at the blood bank, and went in for an appointment. There are a ton of reasons they turn people away, but I qualify, and I have Donor for Life status. I have donated 16 times, although this is the first time in 4 years. I have another appointment at the end of March.
Being here in hospital, seeing *sick* children, I see how much it matters.
I came to see Ellie a little after 2pm. I was greeted with a huge smile. It has taken a while to develop, but ellie finally shows a true preference for her mama.
Today, we played, worked on rolling, on sitting. We had a nap in my big comfy chair. She woke up, and I fed her, and she smiled a thousand times at me. We played peekaboo, and she giggled, a giggle that sounds like angel bells ringing. She is perfect.
I am sitting, rocking, with her nestled in the crook of my arm. So many times today, I thought "I should take a photo of this", "I should tape this". But, that would mean breaking the moment, and moments like these don't happen enough.
This spring, we would like to sell our townhouse, and buy a detached house. We've made a plan to do one project per days off, and hopefully that means everything we want to have finished will be finished in eight weeks.

This week, our project was to buy a new built-in vacuum, because we thought ours had packed it in. We went in to the local vacuum shock, and nearly died of sticker shock. I cannot believe how expensive central vacuum systems are! It made me think the prices of those Dysons might not be so ridiculous after all. Well, we started chatting with the owner of the shop, and he told us our machine might be repairable! Repairable it was, Jason is picking it up right now. It was still expensive, but will last for several years (it has a new motor), and I can't wait to start vacuuming. Seriously! I am actually looking forward to having it back.

Next week, we're reorganizing our kitchen eating space/office space. I am dismantling my sewing area, and we are going to paint. I have disliked the red in our kitchen since the day that we moved in. Finally, it's going away. We are taking down the shelving unit attached to the wall, and moving it into the laundry room. I'm going to paint the sewing desk Great-Grandpa built for me, and use it to store my many kitchen appliances. I am also going to buy some grey, yellow, and white fabric to make box valances for over the windows in the kitchen. It's going to be a busy week!

After that, we're going to change the countetops in the kitchen (probably around Easter), get a new toilet for our bathroom, touch up the paint around the whole house, put in a new vanity light in the kids' bathroom, paint the kids' bathroom to something more neutral, reorganize our den, declutter, declutter, and declutter.

I love spring cleaning. I love the idea of refreshing everything, of getting rid of the clutter in our lives, of simplifying. When all the inside is done, we'll move outdoors, pressure wash the patio, put in some new plants, and finally list the place! It's going to be exciting :)

Friday, January 27, 2012

Jason and I are growth hormone injection trained! The training was this afternoon, and way easier than I had anticipated. The needle is minute, thin as a hair, and the pen makes it easy peasy to administer the dose.
Ellie's IGF-1 level test was run this morning, it takes a couple weeks to come back.
We have to pay for needles, alcohol swabs and the sharps disposal box. But, because we are in the at home program, they should be covered. I am going to look into that on Monday.
If Ellie's IGF-1 levels show growth deficiency, we will qualify for PharmaCare coverage of the drugs. But, if the test shows adequate production, we are in for a battle. Ellie is no longer even on the PWS growth chart. She is too small. 0 percentile for weight and length. Crazy. We haven't seen a huge increase in growth since she started the BiPAP, so that isn't making much of a difference in her growth, but her development is tremendous. Jay hadn't seen her in a couple days, and he notiiced such a change. She still struggles being on her belly, but has no problem rolling from left to right and back again, to follow toys, to track someone walking across the ward.
It will be interesting to see how she reacts to the hormones. I asked, they said it would take 3-6 months for her to really grow. I don't know if that means catching up to her peers, or what. We will see!

Thursday, January 26, 2012

Team Ellie 2012

I am so excited for this year's One Small Step walk! Last year, I really didn't know anything, but a bit about Prader-Willi. This year, I've lived a year with it, I know so, so much more than I ever imagined I would.

This year, I am so motivated. I want to raise $10,000.00

I want to make a difference in my daughter's life. I want them to find a cure for the hunger of PWS. I want her to be able to grow up to live an independent life.

This year we have witnessed the truth behind the saying "it takes a village to raise a child". I would love for our friends to fundraise with us, walk with us, and rally behind our sweet little girl, for her future.

Wednesday, January 25, 2012

We are still waiting on the results of the EEG that was done on Monday. Ellie had a neurology consult today, and of course, didn't perform. I have to remember to bring in my camera so they can see the evidence of her winking. I have a ton of photos, she usually does it all the time.

They want her to have a ct scan. I've been doing some research, and the thought of exposing her to radiation bothers me, so I am going to ask why they can't do an MRI, instead. I'm all for finding out if there's something going on with her brain, but not if it's going to increase her chance of getting cancer later.

Here are the photos I am going to bring in with me, she kept doing it, over and over...

She might just be hamming it up, but they said it's unusual for babies to do this.

The EEG results came back abnormal. Dr. D said something about slow waveforms on the left side of her brain, which could explain the "tics" and her not using her left side as much as her right. We are still waiting for the results of the CT scan from this morning. I guess I will find out tomorrow.

Tomorrow afternoon I learn how to administer growth hormone. I am so looking forward to it. Finally, after all these months, we are finally starting.

Sneak Peek

Here's a sneak peek of our photoshoot with Kalem Photography, who came out to do our Helping Hearts session!

Isn't she lovely?

Tuesday, January 24, 2012

The thing I don't like about hospitals, is that nothing is ever normal. Ellie has been winking, a lot, out of her left eye. She scrunches up that side of her face, and it sort of looks voluntary, but other times it doesn't. Now, I use the left side of my face a lot more than the right, but the doctors want neurology to do another consult to make sure something else isn't going on.

Sigh... something else to worry about.

Monday, January 23, 2012

Another day here. Can you believe my sweet little girl is already 9 months old??? Three quarters of a year old. I can't.
She weighs 4.9kg, and is 54.9cm. That's up a lot from 1.374kg, and 39cm at birth!
Dr. Dee came by today, and here is the latest. They are going to start Ellie on growth hormone, next Monday! 7 days from now. One short week.
She reiterated that starting gh therapy is not without risk. Ellie's airway might fail, and she might need intubation. She said they are always able to save kids when their airways collapse. But, she doesn't think that will happen. The head of the ICU, who was the one to say "no gh therapy without a trach", has even changed his tune, and believes Ellie will be okay.
The difference in her strength is undeniable.
No word on how long we will have to stay after they start.

Friday, January 20, 2012

This day feels like it went on forever, and it's only 7:46pm.

Jakob went to bed early last night, at 7:30pm, as part of a new bedtime routine. I know that when Ellie comes home she is going to be trained, and she already loves her schedule, so ideally, I will manage to get a good routine in place for Jakob, now. He woke up early, which is fine for me, and early for us means 7:45am :)

Ellie's day consists of waking at 7am, feeding at 7:30am, having a bath, playing/cuddling until 9am, sleeping until 10:30am, feeding, playing/cuddling until 12pm, sleeping until 1:30pm, feeding, then playing, doing physio/ot until 430pm, feeding, then napping until 6pm. Then she's awake until 7:30pm for her last feed of the day, and then she goes to sleep at 8pm. She sleeps through the night, provided her BiPAP mask stays on.

This morning we got up, had breakfast, then got dressed for the snow, and headed outside to play. I got cold quickly, but the boys were out there for over an hour, making snow angels, throwing snowballs, generally chasing each other around. We are the only unit in our row that has young children, so the backyard snow was pristine. Not entirely sure where the dog next door has been going, we didn't see any yellow snow! I folded laundry, and tidied up the kitchen.

After they came in, we had hot chocolate, and I warmed up last night's leftover turkey chili. Mmmm, so good. We ate lunch around 11:30am, then Jason got ready and went to work. Jakob was tired from all the fresh air, and went down for an hour long nap. Around 1pm, we were ready to face the day again, and went to spend the afternoon with our Ellie-belle. My word, they are adorable together. Jakob just loves Ellie, and Ellie thinks Jakob is the most fascinating person in her world. She is crazy about him.

The three of us snuggled in the big la-z boy chair, until Jakob decided he wanted his own chair, and then they watched a couple movies. There's been a lot of turnover in the ICU this week. People who had been our neighbours for a few weeks went home, and now there are three little babies around us. They're all under a month old, and all almost as big, if not bigger than our big little girl.

Dr. Dee came by for a brief chat, and to tell me how impressed they all are with the progress that Ellie has made in physical strength, level of alertness, and interaction. She said that it's possible Ellie's growth and improved tone might also be reflected in her airway, so now they are considering trialing Ellie on growth hormone as early as the end of next week (trying to get in as much strength before then), and seeing how she does. She did mention that Ellie would have to stay in the ICU for quite a while, and likely until she proves the gh doesn't negatively impact her breathing. She said they will be on alert for emergent situations that might lead to Ellie needing to be intubated, but they're willing to take the chance that she can do well on the gh. I'm so nervous putting it out there, because I don't want to be disappointed, but maybe Ellie will manage not to have to be intubated. Oh, I can only hope, and pray, and believe she has it in her.

We left around 4:45pm, just after her feed, and went to my mom's for a little visit. I hadn't planned on going, but traffic was bad, so it was much easier to stop in there until the rush had passed.

We got home just before 7pm, Jakob went straight into the bath, and I worked out. I feel proud of myself for actually making myself sweat. I didn't do a long workout by any means, just two reps of the circuit we did at the kickoff to Choose to Lose.I did a quick warm up, the 45 seconds each of inch worm, alternating lunges, side lunges, prisoner squats, push ups and step ups, twice. To end my workout, I did three minutes of plank, and a minute on each side of side plank. By the time I was done, Jakob was asking to get out of the bath.

I dried him off, got him ready for bed, read him a few books, sang a couple songs, and turned off the lights. It's now 8pm, and completely silent from his room. I can only hope the routine establishes itself quickly. I can't even begin to explain how nice it is to have a few hours of me time!

Jakob, Ellie and I are watching Dora the Explorer. Jakib decided to wear his dragon outfit, and he has attracted a fair bit of attention. Of couurse, he just gets annoyed when people want to talk to him - "I am watching *Dora*..."

Our one neighbour was discharged home this morning. They'd been here since December 29th. The other family I talk to a fair bit is also scheduled to go home, as soon as the infant transport team can fly out (not in freezing rain, apparently).
We have new people in, and out, and in... it is hard to keep track! Looking forward to the stim test next week. I'm ready to exit our holding pattern, one way or another. My patience seems to be lacking today.

Thursday, January 19, 2012

I am trying, ever so hard, to be patient with this whole process. Honestly, it is a gut-wrenching experience, but it could be exponentially worse, and I am conscious of that.

Today, I met with Dr. Dee and she would like to wait another few weeks to see if Ellie grows any more, longitudinally, before giving up hope that she can do it. Next week, they are going to repeat the miserable growth hormone stimulation test, to see if the results differ from those in the fall. If they do, if she "fails" the test, then they will be more inclined to start gh therapy sooner, rather than later. If she "passes" again, they will try to hold off until she grows into the new BiPAP mask, on her own, before starting. Then, when she fits the new mask, they will initiate gh therapy, and monitor her (still in hospital...) until they're sure she reacts well, and doesn't suffer from any respiratory complications. Realistically, we are looking at a couple, if not three more months in hospital.

They do not want to trach her. But, if she reacts poorly to the gh therapy, or if she doesn't grow enough before that count down is done, they will.

I'm not sure what I want. All I want is for my family to be whole again. I'm exhausted, and it has only been three weeks. Three short weeks, where Ellie has been missing from our daily household routine. I don't look for her any more, it seems I have adapted to her absence.

On Sunday, we are very grateful to have a photographer from Helping Hearts, coming to photograph Ellie. I am so excited!

You wouldn't believe the progress she is making. She is awake all day, she actively seeks out attention, raises her arms to be picked up, babbles, laughs, smiles, winks. She interacts so much. Physically, her sitting has improved exponentially, she can now easily roll from back to belly (but then she gets stuck), and she can finally bear weight on her legs. She is by no means the same baby that was admitted in December, prior to commencing bipap. She is amazing.

A nurse today, told me that Ellie lights up the room whenever she enters. She really is our shining star.

Wednesday, January 18, 2012

We arrived at the hospital today, just in time for Ellie to be measured by endocrinology. By the same nurse as when she was admitted, on the same measuring board.

Oh, how I wish I had just been patient, and not tried measuring her on our own. I was so excited, so sure she had grown enough, and my heart broke when I saw the headboard slide down, and the number read out 54.9cm

Ellie was 54.5cm last time. She needed to grow at least 7mm, to be on track for "normalized" growth, to be able to go another month on her own, to give her the chance to fit that bigger mask. 4mm just doesn`t cut it, and I am crushed.

I cried into her pretty blonde hair this evening, that I was so sorry. So sorry she hadn`t grown enough.

I am going in early tomorrow, for rounds, to see what the verdict is.
My time, my time, when I can eek a little out in a day, is spent in the shower. I could be in there forever, thinking, dreaming, staring into space like a zombie, while hot water falls on my head. We have a corner shower, with glass walls and door. When the steam fogs up the glass, it makes a wonderful place to draw, write lists, doodle, erase and repeat. I do my best thinking in the shower, uninterrupted, it isn't quiet, so the thoughts aren't overwhelming. I love my showers.

Since Ellie has been back in the hospital, now 22 days and counting, I have added a step to my routine. When I'm dry, and dressed, I spend five minutes to make myself look nice. I dry my hair, put in my contact lenses, put on mascara, eyeliner, neutral eyeshadow, and I'm done. Five minutes to show the world that I appreciate myself, I appreciate the time I get, and I'm not wasting precious minutes with my little doll. People find me much more approachable when I actually put effort into my appearance. It's amazing, on the days where I don't try, where I show up at the hospital with my hair in a bun, my glasses on, bags under my eyes, they leave me alone. And, alone isn't where I want to be.

It's incredible how I feel when I put the effort in, how much better my outlook is on the day. And so, I resolve to try every day. For myself.


The other day, I noticed that one of Ellie's blankets was on someone else's bed. The same day, I noticed that Ellie's baby seahorse was on a different person's bed. My bad for not labeling her items, but it was a total wake-up call to me. Of course, if these items ended up in general circulation, they would be chosen first. Soft, cuddly blankets trump scratchy, over-washed blankets any day. As do new toys, with fresh batteries, that don't come from the 80's (and I mean that quite literally, the toy room in our ICU is stocked with toys from my generation!)

I make an effort to bring in clothes for Ellie, from home, so she doesn't have to wear the hospital clothes. Clothes donated long enough ago to have lost the soft feel of cotton, and have taken on a very starched, sad, and faded appearance. What happens to the babies whose parents come from far away, who don't have a bunch of clothes to provide? They get the hospital stock. It made me sad. So, we went through all our clothes at home, at Grandma's, at Mormor's, and we donated four huge bags of baby girl clothes.

The toy situation also made me sad, so we went through all of Jakob's toys, and he chose a bunch to donate. When we brought those in, the nurses told us it felt like Christmas. What good were they serving us at home, collecting dust, when they could bring joy, to kids who need a lift, now?

This morning, I finally brought down my bolts of minky fabric, from the top shelf in my sewing space, and made 16 blankets for the ICU. I have no plans of returning to SusieCues any time soon, and babies need better than worn-out flannel. Jakob helped me pile them together, and we tied them with a bow. We're heading in to the hospital now, to drop those off.

I am not Wonder Woman, I'm not trying to impress anyone, I'm just doing what I have to do. If you saw a very real need, and were able to do something to fix it, wouldn't you?

Tuesday, January 17, 2012

Today was a nice, lovely day.

We woke up early, and sneaked into Jakob's room to snuggle him awake.  After a few giggles, and an "is it good morning time, Mommy?", we got dressed, and headed downstairs for a quick breakfast. I packed his lunch for school, while Jason helped Jakob put his shoes and winter coat on. This morning, we decided to finally walk to school.
I am so glad we did, it felt fantastic to be out in the cold morning air, and we got to school just before 9am, rosy cheeked and feeling great. After we dropped him off, Jason and I went to buy some new shoes (shoes for Jason, winter boots for Jakob). We walked home, did some laundry, did some filing, and had a coffee.
I picked Jakob up from school, and we were invited to a friend's house for lunch and a play date. Jakob loves Isabella, he always has. And her mom is an amazing friend, I am so lucky to have.
When both kids were getting tired, we went home, and got ready to go see Ellie.
She was in a great mood today, every day she gets a little bit better, and we notice. It's amazing, because when you are with someone every day, it is often easy to miss the little changes. I love when nurses, who have been off for a week or so, come back and rave at how she has changed, how she has grown. She is really astounding everyone with her progress.
Auntie Beth came for a nice visit, and Ellie got in some great snuggles. We even did a rough length check, as I was becoming ever impatient for our next endocrinology check-in. She's grown approximately a centimeter in two weeks. TWO WEEKS... a centimeter. Do you remember when I was sad over a 4mm change in a month?? Dr. Dee came by for a quick chat. First she mentioned that will Ellie being more active, and being able and wanting to eat more and more, that they are going to increase the density of her formula to 24 calories per ?, up from 20 cals.  She also said that they will measure her at some point this week, and then we will have to decided when to start gh therapy. We are starting it, for brain development, it's just a matter of deciding whether we start now, or wait until she has grown enough to fit the next size up in BiPAP mask. I'm inclined to start as soon as possible, because if she starts in a hospital setting, she will grow more quickly, and safely, and then would be able to come home sooner. I am so ready for her to come home.

Monday, January 16, 2012

It seems so wrong to have our life going on as it ever did, while Ellie spends all her time in the ICU, missing out on so much. Snow, for example. She has never seen snow, experienced the cold, marvelled wide-eyed at the sight of white flakes falling from the sky.

I remember Jakob's first snow experience like it was yesterday, yet it was over three years ago. He stared up at me, blinking, wondering who was placing icy kisses on his face.

I am trying, so very hard, to be optimistic about her next assessment. Every ounce of hope I have is being thrown into believing she has grown. She has to have grown enough. I desperately want her to be able to experience spring, summer. Beaches, swimming, sand, all those things you have to avoid with a trach. No camping, no trips away, no crowds. She has to have grown enough.

We spent the evening with Ellie, Jakob watched a movie, then played for a while with a pink bus, and then colored on one of those magnetic doodle boards. Ellie was content to be passed between Jason and myself, happy to roll around on the play mat, to watch her big brother playing. She dazzled us with smiles, and made us laugh with her funny faces.

I fed her, changed her, danced with her, and sang to her. Tonight was the first "bed time" I was present for, in too long. Most of the time, I simply can't keep Jakob up so late, but tonight we made an exception. Ellie is very attuned to her schedule, and she knew it was her last feed of the day. She knew that it was almost bed time, and tonight, when she knew the day was done, and all that was left was to sleep the night through, she didn't resist my cuddles, she didn't cry as I set up her BiPAP, she was beautifully calm, and ready for rest.

If only she were home.
I have high hopes for the length check this week. When Ellie sleeps, she sleeps. When she is awake, she is awake. There's no in between, like there was before. Her little newborn pants are getting short! It could be that her thighs are HUGE, but it could also be that she has actually grown.
We haven't talked really about what will happen if she grows. Her face still definitely doesn't fit the mask, but maybe they will trial her on gh here, and see how she does.
For those of you who pray, please pray she grows. My, how that reminds me of when I was pregnant with her. Always hoping, wishing, and praying for growth!

Sunday, January 15, 2012

The Wink

Ellie learned how to wink this week. No idea why, or how, but she thinks it's hilarious, and will wink at anyone, and everyone who pays attention to her. Impossible not to love her!

Jakob loves to play in the snow. Really, what child doesn't? He ran around the back yard, threw snow at me, shook the trees, and giggled as snow fell down on his head.

He found his bucket, which had filled with rainwater, and had frozen over. I took the opportunity to explain a little about how ice forms. We took the top layer of ice off, and it revealed little spur columns of ice floating in the water. Jakob thought this piece looked like a little forest. I completely agree!

Little Man loving the snow

Do you want to go inside?

Jakob and I are waiting for Grandma to finish with her hair appointment, so we can all go to see Ellie together. It snowed last night, and Jakob is dying to go play outside, but I had some things - mainly laundry- to do, so we've been playing indoors.

Jakob is crazy about his play dough. Presently, he is pretending it is a big pizza, and is cutting it into wedges with a Popsicle stick. You have to admire the imagination of a three year old, it's really tremendous.

I made a batch of crackers, using up a Pillsbury pie crust that had been  sitting in my fridge for too long. So easy, and tasty! All you do is unroll the pie dough, and cut out shapes. Then you bake at 425 for 8-10minutes. Jakob loved them, I love them, all in all very fun. If I had been so inclined, I obviously would have made my own dough. We rarely buy pre-made doughs, and I'm struggling to remember why we bought the package in the first place. Next week, I am going to make goldfish crackers!

Jakob asked for applesauce, so I pulled out the Beaba BabyCook, and made him some applesauce. At least the machine is getting used while Ellie is in the hospital! That reminds me, I need to ask the doctors about starting her back on solids. 

We are also making sourdough. I've neglected my starter for a long, long time, so I hope that I rescued it, and our bread isn't too tangy! I am going to try to remember to feed it weekly, all it takes is three minutes. It's worth it for incredibly tasty homemade bread.

Time to go play in the snow, while my bread is rising. Ack, I just realized that I didn't leave myself enough time to bake it before we leave. Hmmm... this ought to be interesting!

Saturday, January 14, 2012

The intent of this post is to clarify Ellie's current situation in hospital. I've been posting here and there about what's been going on, but it is a bit confusing, so hopefully this helps!

Ellie is currently in the ICU/TCU at Children's Hospital. She is there indefinitely. Her main problem, at present, is that her face is too small for the bi-pap mask. As she is dependent on the mask to maintain her airway throughout the night, she isn't able to come home until she fits a proper mask. The mask they are currently using is one that has been discontinued due to safety issues, and is only appropriate in a hospital setting, with constant monitoring.

As part of the treatment for PWS, it is imperative that Ellie start growth hormone therapy prior to her first birthday. Although wildly debated, and not well researched, GH therapy has the potential to cause obstructive sleep apnea in non-apneic children. As Ellie already has severe obstructive sleep apnea, introducing a medication with respiratory side-effects could be life threatening. Her doctors do not understand the mechanics behind her apnea, and feel uncomfortable taking any chances with her breathing.

If Ellie can grow, in the next month, big enough to fit a safe bi-pap mask, she will be started on GH therapy, and after a week of monitoring, will be allowed to come home on her bi-pap machine. We met with nursing support this week, as part of our application for night nursing hours. She will still require night monitoring, but probably not as intensely as she presently requires.

If Ellie doesn't grow sufficiently by the time endocrinology requires her to start gh therapy, her doctors have decided that they will need to secure her airway. The will give her a temporary (6month - 1year) tracheostomy, to bypass her obstructions. It is likely she will not require any ventilation, although she will need humidification at naps and night time. The recovery from trach surgery varies, but it is likely she will need to be in hospital 6-8 weeks afterwards. The training course to be able to care for her at home with a tracheostomy is 6 weeks.

So, that's her situation. Best case scenario, she is home at the beginning of February, happy, healthy and growing. More likely, she will be home in time for her birthday, with a trach, and a new lifestyle. The positive to both outcomes is that she will be home.
I knew this morning, that Jason would be home early from work, and so I planned to spend the morning with Jakob, anticipating that the three of us would go see Ellie in the afternoon.

Jake and I had a lazy morning. He woke up just past eight, and came into my room. I tell him every morning, and I mean it with all my heart, my favourite time of day is when we snuggle in bed. We played "tent", where I prop up the comforter, and he pretends he's camping. He brought all his stuffed friends over, we told stories, and made up games. He doesn't really like to snuggle any more, but he does like to lie around, and so we played until almost ten. When our stomachs started to rumble, we headed downstairs for breakfast.

I made pancake cupcakes (pancake batter in the cupcake maker), with blueberry syrup. Jakob ate his breakfast, while I puttered around the kitchen rearranging appliances, clearing out bottles, and tidying up. I got rid of all my Snappies bottles, and felt sad that my breastfeeding/pumping days are behind me. I noticed the two cases of formula in the laundry room, and made a note to remember to drop them at the food bank. They will expire before Ellie comes home, and the hospital provides her formula.

Not wanting to feel sorry for myself, I decided today was as good a day as any to get some crafting done. Jakob and I made an extra Santa hand ornament for Great-Grandpa. Then, we moved on to playing with the goopy, fascinating mixture of corn starch and water (1c cornstarch, 1/2 c water). We played with that for a good hour, before it started drying out, and Jakob was ready to move on. We cleaned up, I made myself a cup of tea, and then we decided that we would put together Ellie's quilt.

I remember piecing together the different fabrics that I loved from past projects, but I never found the time to actually sew them. Knowing that Jakob wouldn't have the patience to sit around and wait for me to do it properly (ironing and pinning), I just threw it all together. I love the way it turned out, and if I could keep track of my camera - which I think is at my parents' place - I would take pictures. I serged lime green minky to the back, and took it with me to the hospital. It looks so great on Ellie's crib, and I think she likes the different patterns.

When Jason got home from work, I made lunch. Nothing fancy, just pasta with homemade pesto sauce, bacon and tomatoes. I had never made pesto before, it's soooo easy! Two cloves of garlic, pulsed in a food processor. Then you add half a cup of parmesan, 1/4 cup sunflower seeds (you can use pine nuts instead), 2 cups of basil leaves, and two tablespoons of olive oil. Blend until it's the right consistency for you, and either use it right away or store it in the fridge with a thin layer of olive oil on top so it doesn't discolor! Easy peasy!

After lunch, we went to the hospital. Little lady was wide awake when we got there, and her eyes lit up when she saw me. She'd had a great morning with my mom, and had a long nap, so she was ready to play. We snuggled her, and she was full of smiles and giggles. She's definitely gaining weight, and I am so eager for her growth check next week.

We went for a walk up to the third floor, Canucks playroom. Jakob loves it there, and Ellie was so happy to be off the ward. She started fussing after about half an hour, so I left the boys to play, and the two of us went back downstairs. It's funny how some moments solidify themselves as memories you can recall with the utmost clarity. Walking down the hallway with her was one of those moments. We walked slowly down the hallway, admiring the stars on the walls, the mirror in the corner, the spots on the floor. She clung to my shirt with both hands, snuggled in as closely as she could to my bosom, rubbing her nose against my shirt. She giggled, the most beautiful sounds you could imagine. For a brief moment, it was just the two of us, in our own world, just a mother and her daughter, and nothing but love and light. It was a beautiful, tiny little moment that meant the world to me.

We got back to the ward, and I put Ellie down for a little nap. I started coloring a puzzle for Jakob, but mimicking the patterns in Ellie's quilt. I was almost done when the boys came back, and it was time for Ellie's feed. She was sleepy for her feed, but still had no problem finishing within twenty minutes. She has progressed so well with her feeding, I am certain she won't need a g-tube, and I will make sure the doctors listen to our wishes for her to prove she can feed without one if she needs a tracheostomy.

Jakob watched a movie, and Grandpa, and big-Papa came by for a little visit. After they left, it was time for us to leave as well, and Ellie effectively broke my heart. I had her all tucked in, with her baby doll nestled in under her arm. Her little seahorse was playing its lovely tunes, and she was calm. I gave her a snuggle, and told her I loved her, gave her a kiss, and went to leave. I looked back, and she was crying. She wasn't making noise, but she was crying, tiny little cries. I went back to her, and she lit up. She smiled the biggest smile I've ever seen. I snuggled her a little more, and told her I didn't want to go, but I had to. I kissed her a thousand times, and backed away slowly. She cried, again, pleading with those massive blue eyes, for me not to leave her. It was devastating.

The three of us went to have dinner with my mom, my brother and his girlfriend. After dinner, we went to the community arena, for a public skate. It was our first skate of the season, and so much fun. It felt amazing to race around the ice, and to see the joy on Jakob's face, at finally being able to "play" hockey. He didn't realize how difficult skating would be, but we promised him lessons, so I will look into that this week.

It's been a long, emotionally charged day, but a great Saturday. I am grateful for the moments. What is life, but for a collection of moments?

Friday, January 13, 2012

This week, Jason and I went to Calgary. Originally, we planned to go to look seriously at houses, and we did look, just not as seriously as we had intended. We rented a car, stayed in a really nice hotel, and had a great couple of days.

On Tuesday, when we got in, I called my biological half-sister, and we met her and her husband for dinner. She was already a few days overdue, but little man wasn't ready to meet the world yet. He chose today to be born, and I tell you, it is the most bizarre feeling.

C and I, while we share the same paternal DNA, really don't know each other very well. We met ages ago, I think I was 19 at the time, maybe 20. Then we had her come stay for a few days a couple years later. After high school, she moved to Alberta, where she went to college, fell in love, got married, etc... and I haven't seen her in probably 3 or 4 years. I have her on Facebook, and keep up with news through that. We don't really talk, there's no denying that our relationship is a little awkward. That said, I find her the easiest one of all my biological relatives to relate to. She reminds me a lot of me, and I loved spending the evening with her. I wish we lived closer, because I think we really could be sisters.

I love babies. Love them to bits. I love hearing when babies are born, love to fawn over photos. When I saw the photo of her baby boy, I burst into tears. Tears of pride. My sister had a baby! I can't even explain it, other than there is some sort of biologically ingrained response to relatives having babies.

I love our niece to bits, but she's Jay's relative, Jay's niece. This new little man, I have only seen one picture and he has stolen my heart.

I cannot wait to see them again. Is it summer yet?

Haven't posted in a while, mainly because nothing has changed.
Ellie is still in the ICU, still hanging out. She is a lot more alert, more vocal, and more expressive.
Next week they're going to measure her to see how she is growing. Ellie sure is getting chunky, which has me a little worried, but maybe she really will grow. Her hair is getting long :)
Jakob is happily watching Toy Story 2, Ellie is napping on my chest.
Will post again when I actually have an update!

Monday, January 9, 2012

It was a sad day in the 100 acre woods, when Pooh ran out of honey...

Snuggles with my sweet baby girl.
My favourite part of the day is snuggling Ellie. Today, she smells like heaven, she had a baby spa morning, washed, scrubbed, moisturized with Burt's bees baby bee products.
Dr. Dee was by this morning. She said Ellie is way more alert during the day, and that they've really noticed an improvement in her energy and interactions. Joanne, the child life lady, spends mornings making Ellie work! She plays and plays, working on development. We have noticed a huge change since E was moved back out onto the ward. People stop by all day long, there is always something going on. She is happy, as happy as you can be in hospital.
Dr. Dee said they're a little worried E is gaining weight too quickly. But, said it is possible she is chunking out prior to a growth spurt. They're not going to change her caloric intake until the end of the month, to give her the opportunity to grow as much as she can.
We talked about getting the RSV vaccine. It is ridiculously expensive ($1000 a shot), and needs to be given once a month until the end of RSV season. Ellie can't get RSV. That would be so, so bad. Pretty sure she qualifies for the coverage, so that should start this week.
We also got into the medical funding side of the At Home program. Dr. Dee said at the end of this we will also get respite coverage. This is good.
We are definitely staying in BC.
Jay ans I are going for a mini holiday in Calgary, sans Jakob, which will be good.
Mmmm... back to my snuggles.

Sunday, January 8, 2012

Today I did not see my baby girl. Today, I cooked, and baked all day, and entertained all evening. Happy Birthday Mommy!

Friday, January 6, 2012

Awake My Soul :

How fickle my heart and how woozy my eyes
I struggle to find any truth in your lies
And now my heart stumbles on things I don't know
My weakness I feel I must finally show

Lend me your hand and we'll conquer them all
But lend me your heart and I'll just let you fall
Lend me your eyes, I can change what you see
But your soul you must keep, totally free
Har har, har har, har har, har har

In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life
In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life

Awake my soul, awake my soul
Awake my soul
You were made to meet your maker
Awake my soul, awake my soul
Awake my soul
You were made to meet your maker
You were made to meet your maker
Tomorrow is my mom's birthday. I'm making her a layer cake, with strawberry filling, and whipping cream frosting. This is my go to recipe for White Cake:

  • 2 cups white sugar
  • 1 cup butter
  • 4 eggs
  • 1 tablespoon and 1 teaspoon vanilla extract
  • 3 cups all-purpose flour
  • 1 tablespoon and 1/2 teaspoon baking powder
  • 1 cup milk
 Preheat the oven to 350F, and grease your pan with Let Me Go!*
  1. In a medium bowl, cream together the sugar and butter. Beat forever... I usually leave the mixer running for about 5-7 minutes.
  2. Beat in the eggs, one at a time.
  3. Stir in the vanilla (or Almond extract, or any other flavouring you like!). 
  4. Combine flour and baking powder, add to the creamed mixture and mix well. 
  5. Stir in the milk until everything is smooth. Pour batter into the prepared pan. 
  6. Bake for 30 to 40 minutes in the preheated oven. For cupcakes, bake 20 to 25 minutes. Cake is done when it springs back to the touch. 
This is the recipe I use to fill two 6x2" pans, with enough leftover to make half a dozen mini cupcakes, You can half the recipe and it will make enough to fill a 9x9" pan :)

Let Me Go!
This is my favourite cake release recipe. Seriously, awesome. I've tried greasing, then flouring. I've tried so many different ways of getting my cakes out of their pans. This works!

In a small bowl, mix 1 part vegetable oil, 1 part margarine, 1 part flour. Mix with a fork until smooth. Use a pastry brush to apply liberally to your pan.

Thursday, January 5, 2012

Today was a preschool day, and I felt like I owed it to Jakob to get him there. I'm so glad I did. We made it just in time, before class started, and I had a chance to fill his teachers in on Ellie's situation. They were so empathetic, and nice about it all that I started crying. Sigh, I've reached that finnicky point of having dealt with too much to keep it in any longer.

Jakob wanted to bring the two musical donkeys we have as show and tell. One is his, one is Ellie's. He insisted on bringing Ellie's. "I want to tell my friends that Ellie is at Children's Hospital".

I managed to get out of the classroom before he saw me crying, and walked right into the open arms of a very good friend. She talked me through things, and soon I pulled myself back together. I'm so, so lucky to have the friends I have.

I went for coffee with another friend, and soon it was time to pick Jakob up again. He talked, and talked, and talked about things he did at school. He was in such a great mood. We went home, had lunch, and visited with Jason for a bit. I made Jakob a batch of the best play dough* then the two of us went to see our Ellie.

At the hospital, Jakob and I made a little side trip to the Foundation's office to drop of the rest of our donations towards Ellie's NICU baby tile. We raised $1200!! Our friends and family are so very generous, and we are really excited to have been able to give back to the hospital.

Ellie woke up as soon as she heard my voice. She was so happy to see me, and it hurt to know she missed me so much. Throwing salt into that wound, an insensitive (although I'm pretty sure it wasn't meant to be malacious) nurse, told me "She's been waiting all day for you". Another big sigh.

I fed her, changed her, talked to her. Jakob played with his play dough, blew bubbles for Ellie, watched tv. We were there for most of the afternoon, until close to 5, when I was supposed to meet my parents. With a heavy heart, I told Ellie I would come back to see her before I went home.

We had dinner with my parents, went to an appointment together, and by that point it was already 7:30pm. I wasn't sure what to do, my Mommy Guilt was killing me, and so I listened to my mother, who told me to go see her for just half an hour. Jakob was happy to go see her again, you wouldn't believe what an angel he is when we're there with Ellie. He loves her so, so much, he will do anything (including being very quiet for several hours) if it means being able to stay with her. He always cries when we leave her.

I am so glad we went, she was wide awake, and incredibly talkative. She is currently working on "b's" and attempting raspberries. I need to video her sounds, because chances are good they're going to disappear with the trach. That sucks.

I've been reading about g-tubes, and I am not convinced that is the right way to go with Ellie. I don't argue with the trach placement, I think that's a good thing. The g-tube, though, we worked SO hard with Ellie to get her properly oral feeding, I don't want to lose all that progress. Although it would mean going upnder twice, and two separate surgeries, I am going to ask that they at least give her the chance to try bottle feeding with the trach. She has the energy to oral feed, her suck is good. I can't see a reason to take that away from her, and to increase the likelihood of feeding difficulties later on. I hope they will be open and reasonable when it comes to that. If she can't do it, she can always get the g-tube later.

Tomorrow I'm meeting a friend for coffee at Children's, then on to my mom's birthday lunch. I think I might move Ellie's crib back into her room over the weekend. It's hard having a constant reminder that she isn't here at home with us. And, when she does eventually come home, we will have a night nurse, who probably doesn't want to watch Jason and I sleep...

Wednesday, January 4, 2012

Today was a heavy day. I'm glad I waited until now to write about it, I've had time to think things over, and I'm alone, which always helps my thought process.

This morning, we met with Ellie's care team. They had just met to discuss her case. The plan is:
- spend the next month in the ICU at nights. Because Ellie's growth hormone stimulation study came back a "pass", meaning she produces some amount of gh, and because growth is done during deep sleep, and until getting her bipap, Ellie wasn't achieving deep sleep, there is a possibility that now that her sleep apnea is resolved (at least to an acceptable level), she might start to grow on her own. At this point, they want Ellie to grow just big enough to fit into a proper bipap mask. Once she reaches that point, she can start gh safely.

The problem, is that Ellie isn't growing, and she has so far to go before fitting the new mask. She is gaining, but she isn't growing. In the last month she grew 4mm. Millimeters! The doctors want to give her as much of a chance to do this on her own, but endocrinology has put a cap on the waiting period. They want to start her on growth hormone within 2-3 months, no longer. At this point, they want to do everything they can to ensure she gets the maximum brain boosting potential of the growth hormones.

If, within 3-4 weeks, Ellie hasn't grown, our doctors and we are choosing to go a more invasive route. I trust our respirologist as much as I trust my own father. He has been looking after kids airways for a long, long time, and said that he would not approve Ellie starting gh without first securing her airway. Around the beginning of February, Ellie would receive a short-term tracheostomy. Short term, being 6 months to one year, long enough to let the growth hormones do their thing, and build up muscle mass to hopefully resolve the obstructions. Going with the trach, would be the placement of a g-tube. They go hand in hand, apparently.

I am less apprehensive of the g-tube than the trach, but I know that it will all become second nature relatively quickly. After the surgery, Ellie will stay in the ICU for another 1-2 months, so we`re looking at spending about 3 months there all together. Yep, three months.

Tomorrow, I`m meeting with the hospital social worker, to see if we can arrange for some sort of local day care for Jakob. I don't know how I'm going to manage when my parents go back to London, if I don't have some sort of care plan in place for him. We will also be setting up a daily schedule for Ellie, with the help of the awesome charge nurse, to get her into a routine of physical and occupational therapies.

I am worried how all this will go, but I know that in the long run, we're doing what is best for our little girl. I know that a lot of PWS parents will have a different opinion on our plan, but our doctors have done a lot of research, talked with a lot of other doctors around the world, and see Ellie every day, first hand. While our plan for Ellie isn't conventional, it is tailored to fit her needs, and I think it will all be okay. Ellie should be cleared of the trach, the g-tube and long hospital stays by the time she starts remembering it all.

It's going to be an interesting year.

Tuesday, January 3, 2012

Dear Ellie,

I want you to know how much I miss you. I know you're in the right place, where they have the nurses and doctors you need to look after you. It breaks my heart into a million pieces knowing that I can't do it all myself. It hurts to know strangers are snuggling you throughout the day, throughout the night. They don't sing you your special lullabies, they don't know you like I know you.

Every morning, I wake up aching to see you. When your daddy and Jakob and I eat in the kitchen, I find myself constantly looking for you in your bouncy seat, and being confused when you aren't there. I've woken in the middle of the night, gotten out of bed to comfort you, only to wake up and your crib is empty, and you aren't there.

All I want is to do the best for you. It's so hard, when people know so little about your condition, when they label you and the labels don't fit. How can I make the right decisions when the people I trust to look after you don't even know what is best? I want to do everything in my power to make your life as easy as possible.

I know, right now you're sick, and right now you need to be in the hospital. But, what about your development? What about play time? What about getting fresh air? Babies stop developing in hospitals.

It's only been a week. And yet, it feels like an eternity. Every time I leave you, it's all I can do to make it into the elevator without crying. It feels so wrong to be leaving you behind.

It was different when you were in the NICU. I didn't know what it was like to have you at home. To find you watching me as I puttered around the kitchen, to see you giggling with your brother when I wasn't looking. Your laugh, the way your eyes lit up when you looked at things around the house, the photos, the Christmas tree. And now that you're back there, back behind a glass wall, I miss you more than words could ever say.

I know we will get through this, we will, there's no question. I just wish it didn't have to be so hard. I know you miss us too, and I am so, so grateful that Mormor and Morfar come to see you so often. You've given me a glimpse of how my daddy was with me, and have made me love him even more, if that's even possible.

I can't wait for morning, to get in the car, and get back to you. All I want is to hold you close and pretend that we never have to be apart.

I love you, baby girl. Lullaby You <3

Ellie is going to be here for a long time. I am starting to freak out a little. Doc said it is possible we are looking at 6 months of overnights. Half a year.
She said Ellie is a fat 4.5kg, she is definitely not failure to thrive, she is just small stature. Doc said she has seen many, many PWS kids, and she has never seen a PWS kid like Ellie. I feel sick thinking of what might happen, what else might be going on.
She said, they're trying to decide what to do. They could wait a couple more weeks to see if she grows now that her oxygen levels are good. She doesn't think she will, it is more likely that Ellie will just get chubbier, while not growing, making iv starts and bloodwork all the more complicated. She said they are very worried about Ellie's airway. If she starts on gh, it is possible her airway will get worse, which would result in needing a tracheotomy. Kids with "just" pws never need trachs. If she gets a trach, she will also get a g-tube placed. One intervention leads to another, and another... she said they would be temporary, but temporary here means a year. Oh God... I don't know that I can see my baby go through all this.
Maybe, maybe the gh will just help and all this will be fine. No surgeries, no extra problems. Blah.

Sorry if I'm repeating myself. I'm just trying to keep track of my thoughts.

I came to the hospital today, fully anticipating being able to bring Ellie home for the day. Yesterday she was great! Well, I should learn not to wish for things. When I got here, Ellie's heart rate was in the high 190's (before thing we had rarely seen in go over 130!), her breathing rate in the 90's, and her sats in the high 80's.
Her doctor ordered another chest xray, which we are waiting on now. She gave her some tylenol, which seems to be working to lower her temp and everything else (hr is now 170, breathing rate of 71, 92 SpO2).
No going out today...

Monday, January 2, 2012

Well, they're doing something right. Ellie has gained an average of 28 grams a day since being in hospital! She is up to 4.7kg!! Although we should be aiming for 15 g/day with her PWS (according to Dr. Miller), I have a feeling the docs here will be more inclined to start gh if she is gaining what they want her to.
The nurse said she wants Ellie to be on her bipap as much as possible today. She was off it too much yesterday, and got too tired.
No word on when she gets to come home for days. No rush, though, I just want her to be okay.

Sunday, January 1, 2012

New year's day 2012. I'm sitting in a rocking chair, holding my tiny little girl, as she snuggles in as close as she can get. I know she misses me as much as I miss her. Tears seem to be freely flowly today, and I am not a crier by nature.
The nurse said it took Ellie over an hour to feed through the night. This morning was a bit better. My dad came to spend the morning with her. He has a magic touch. It is almost feed time again, we will see how she does. Her cough is rough, her cry painful to hear, she is hoarse.
The plan is to stay the course for today, and weigh her tomorrow. If she has gained, that's great, and maybe we can start daytime home trips. If she hasn't gained, or hasn't gained enough, they'll come up with another plan. I don't want to think about that. I'm sure she has gained, her wrists are a lot chubbier.
Sigh. We have a scheduled appointment on the 3rd with the vent clinic. I have a feeling that will be the big collaborative meeting between all the departments handling Ellie.
She was slow taking feeds last night, and today has been getting progressively slower. She took an hour this afternoon to finish 60mls. Totally not herself. The nurse had me put her back on her bipap for a rest, and pretty much shooed me out the door.
It's hard to leave when your little girl looks at you like this: