Wednesday, June 29, 2011

Today was a success. I got through my third night alone just fine, got the kids both up in the morning, fed, dressed and out the door to go into Vancouver for 10am! We picked up my mom (who was quite impressed that I was dressed and had even brushed my hair!) And went to West Van to visit my 99 year old great aunt, to introduce her to Ellie. The visit was a resounding success, no one cried on the commute, and I managed not to lose my cool in traffic, despite being exhausted.
After spending the evening with my mom, I packed the kids back into our van, and headed home, alone, and put the kids to bed.
Amazing. I can do it!

Tuesday, June 28, 2011

Busy, Busy!!

I was thinking the other day, that I've totally neglected my blog, but with two kids at home, it's next to impossible to find time to breathe, let alone update!

In any case, my lovely mama has Jakob this morning, and sweet Ellie-belle in in her bouncy chair, snoozing after breakfast. I just did some work for my mom, I'm having a cup of coffee, and have a few minutes to spare :)

So, Ellie came home last Thursday. I can't believe she's almost been home for a week. She has changed more than I ever though was possible. When we were in the hospital, the girl slept all day, wouldn't wake for feeds, wouldn't make eye contact, wouldn't do much of anything. I fought to bring her home, and I got to bring her home. Now, with my hands on her all day long, she is finally coming around. She's the sweetest little thing, and being with her family all day and night, she's spending more time awake. I think yesterday, she would have been awake close to three hours! I know that doesn't sound like much, but to progress from less than half an hour in a day, to three hours in a day, is amazing! She looks around, she smiles, she tracks. Best of all... SHE EATS. Okay, she still takes most of her feeds by tube, but yesterday, she nursed once, and had three partial bottle feeds, taking almost a whole feed each time (leaving maybe 10 mls). I've been determined to get her to oral feed, but I don't want to push her too much, so I went out and bought a bunch of different bottles, and she settled on one! She does so well.

Oh, and even better than the eating... she has started CRYING! Granted, it's the most pathetic excuse for a cry I have ever heard (I actually didn't hear it the first time, I was too asleep- it was Jay who sprang out of bed asking "is she okay? is she okay?!!?"), but the girl is making herself known. Ah, it's incredible.

For the first few days, I was awesome about sticking to the 3 hours on the dot feeds. But, that's really tough to do with a little guy running around, and I have come to loathe baby meal-time. Every time the alarm goes off, I change her diaper, wash my hands, go to the kitchen, warm the bottle of EBM (expressed breast milk), add a teaspoon of formula for calories - don't want my "failure-to-thrive" baby to not stick to her little curve! then I go upstairs, either put her in her bouncy chair, or in the bassinette. I draw out the air from her ng tube, test the residuals to make sure the pH is right, make sure the placement marker is at the right spot, flush the tube with 1ml of sterile water, hook up the big syringe, hang it from the nail in the wall above where she is (we have lots of nails around the house, specifically for feeding in different rooms), pour the milk into the syringe, make sure it starts flowing, then, I set myself up at the pump, and pump while she is eating. Then, I unhook the syringe when she's done, burp her, flush out the tube again, put her down, rinse out the syringe, put the EBM bottles in the fridge, throw out the diaper, go back upstairs, set the alarm to go off for the next feed, and try to sleep! It's quite the ordeal.

Because I like my sleep so much, a couple times I slept through the alarm. Well, go figure that Ellie would actually have the chance to feel hungry, and what-do-you-know, she protests! She wakes up when she's hungry, and I've figured out that if she's really hungry, she will actually work for her food, so PO feeds are going well.

We went for a walk yesterday, it was awesome. I am not quite used to the people who look at her and are shocked at how small she is. To me, she's massive! Perspective, I suppose. Ooh, she's fussing. I just have a sec to add some pictures. I promise to update the next time I get a free moment!

Thursday, June 23, 2011

First meal at home!

After almost 9 weeks (5 hours short) we finally are free of NICU life!!
So, genetic is requesting the Prader-willi testing, too, but since that's already been sent off and pending, we don't have to get that done again. Baby girl does need to have some other genomic micrarray done, but I don't know what that means.
I think, and everyone else seems to think that she does have PWS. At this point, I don't care, all I want is to spend a whole 24 with my girl and not have her poked, prodded or attached to any macines.
She's presently snoozing on my chest, satting at 100, happy as a clam, and looking more like her brother than I can believe!
I have to go get the supplies, but I do not want to put her down!!!
Come onnnnnn Genetics! The only thing blocking our discharge is the pending genetics consult. Our supplies are ordered, I need to pick them up. The car seat base needs to go back into the car. I know what formula to add to the breast milk, and I have extra bottles of premeasured ones ready. I have diapers, wipes, her going home outfit, every.single.thing!
Sigh. I really want today to be the day. Sooooooooo badly.

Wednesday, June 22, 2011

We have a pediatrician! That's exciting. My favourite neonatologist here recommended her, and I am very happy.
We have most of our ducks in order, just need the last two consults. The prader-willi test is going to take six long weeks to come back :( but, at least we will be home.
Ellie passed her car seat and I passed my ng tube training.
We are hoping for tomorrow or Friday.

First bouncy chair experience!

Tuesday, June 21, 2011

Today they started talking about the big D word. Discharge. Home.

Her mri was inconclusive insofar as finding answers is concerned. They found a bright spot, but doesn't explain anything. Genetics and metabolic tests take weeks to come back, and since she rarely pulls oyt her ng tube, they consider her a good candidate for going home on a tube!

I just learned how to measure placement, check ph levels and aspirate. Good times!

They did rounds and are planning for early next week. I wish it was this week, since Jay is off still, but there is a lot to do before she goes and we don't want to rush out of here.

They are taking her off hmf, and giving her some sort of formula supplement powder to keep up her calories. She needs to have her 2 month immunizations.

Monday, June 20, 2011


Ellie is currently getting an MRI. They are putting her under general anesthesia, and I believe that they're intubating her as well. I am so nervous :(

Thursday, June 16, 2011

Ellie's eeg came back abnormal :(

An excessive amount of positive and negative sharp waves in the bilateral temporal areas, indicating deep irritation. I don't know what that means and I have been waiting all day to see the neurologist.

Looking through her chart, I feel sick to my stomach. Possible indicators, according to the chart, that my perfect baby girl has something wrong with her: disproportionally short limbs, large abdomen and thorax, widely space nipples, high arched palate, poor suck, hypotonia, slow weight gain, and now an abnormal eeg.
Sigh... everything indicates some sort of genetic issue.
Fml. I am so, so nervous for the results, and for the mri.

Please pray for my little princess.

Ellie-belle is having a good day! I woke up this morning, exhausted because I couldn't take my eyes off the riot coverage on tv (shame on you, hooligans!), only to discover that my right breast had a massive, super painful clog AGAIN. Ugh. I took some advil, put a warm compress on it, and tried pumping, which was excrutiating, and didn't help.
I had Jason drop me off at the hospital in time for the 11am feed. I asked to see the ot/lactation consultant, to see if she had any suggestions. Well, she didn't come before the feed, so I tried Ellie on that side. Wouldn't you believe, she sucked for 45 minutes and totally unclogged it! Wow! The LC came by and was totally impressed :) good girl.

She had her eeg this morning, not sure how it went.

Wednesday, June 15, 2011

Due date

I don't get queezy, but I felt faint watching them draw 6mls of blood this morning from my little peanut. She cried a little, just a little.
Tomorrow we have the eeg, later this week the mri. Bloodwork for prader-willi has gone out. God, I hope it isn't that. I can handle anything, but for her sake, I hope it isn't prader-willi syndrome.
We started breastfeeding again today, with a nipple shield. Works great! But... she is so sleeeeepy.

If ever there were a time to pray...

Yesterday was torturous. Ellie went through a battery of tests, consults and exams. Neurology recommended an eeg, mri and specific genetic testing for one disorder called Prader-Willi Syndrome. Now, before I found out their recommendations for that test being done, I went home for the afternoon, and did some research about all of Ellie's symptoms. PWS came up on my radar, and I read a bunch about it. I told Jay that I thought she should be tested for it, but before I could even ask it was already being done.

I love my daughter, no matter what. But, I am hoping against hope that she does not have this syndrome.

She has every symptom.

Tuesday, June 14, 2011


On the neurology report, and eventual genetics referral. I was doing some research, and I would not at all be surprised if Ellie gets diagnosed with Prader-Willi Syndrome. Jason hates that I looks this shit up, but I am really not the type to have info sprung on me.
The OT came for two feeds, one breast, one bottle. I am going to try a nipple shield starting tomorrow, to get Ellie back to boob. She didn't do anything at the breast, but did well on the bottle. She took 40mls out of 56. Not bad, although it was a lot of work for both Ellie and the OT. Not a swallow issue, Ellie has an energy issue. Not awake enough for long enough, although the OT is going to be involved daily.
Talked with the neurologist about our family histories, and my general assessment of Ellie. She was going to consult with the other oncall neurologist. Depending on them, further testing might be done, as well as genetic testing. Still need to see opthalmology.

Man, she stinks today! No idea why, but she is so gassy!

Ah, in a crib, which is crazy, she seems so tiny in it. And back on all the monitors. Looking at her night chart (something we couldn't do at St.Paul's), I could see she has o2 a couple times by blow-by, room air otherwise. At 11, she has the OT consult, and we are waiting on the results of the chest xray. Seeing an opthalmologist and a neurologist today, too. Busy day.

Monday, June 13, 2011

Feeling Defeated

I am feeling absolutely defeated. Our "visit" to Children's, turned into a full-blown move. They sent everything with her, and I didn't get a chance to say goodbye to any one. I know we can always go back, but I wasn't expecting everything, her clothes, blankets, pictures, and milk to show up at the hospital with her.

She's in a room in the NICU that I didn't even know existed. We were in the main room when we were there before, and I knew there were some small private rooms, but we are in the "back" rooms. They're as quiet as St. Paul's which is good, and I know most of the moms there. It is nice to know that we're not the only ones with long stays. Although, I must admit it stings when they were going over her details and said "oh... she's term". A lot, if not most of the kids that are there, have been there for as long, if not longer than Ellie, but most of those were born earlier, and are still gestationally younger than she is.

I don't know what time it was when she got there, maybe 430pm. They hooked her back up to all the monitors. A HUGE step backwards. Blood pressure, oxymeter, heart rate and breathing monitors. It felt like I stab in the heart to have them ringing off, too.

At 6pm, we tried a bottle, she desatted to 78, so they stopped the bottle. Doctor said that she isn't allowed to oral feed until they discover the reason for the desats, and I am mad St. Paul's took her off the monitors without further investigating the cause. They gave her oxygen, but didn't look for the underlying reason. Sigh.

So, tomorrow is a big, big day. I have to be present for rounds at 930am, and there's a chest xray, and swallow study lined up for the morning. They want her to be seen by an occupational therapist (OT) to evaluate her feeding skills, and also by a neurologist to evaluate her hypotonia. With any luck, someone will figure out what's wrong with her, and we can finally have an end date in sight for this never ending hospital stay.


I woke up early this morning, went to see my girl for the 9am feeding, was there until 11am, came home, fed Jake, cleaned the house and got Jay off to work. My mother-in-law is away until Wednesday, Jason's working tonight, which could be a crazy night if the Canucks win the cup, and I was planning a nice evening with Jake, watching the game.

I knew the doctor was going to call Children's to see if they would see Ellie for a neurological consult about her floppiness. They were going to plan a feeding study for this week, and see what they could figure out. I just got a phone call, Ellie is going there *today*. They're going to evaluate her, and see if she is going to stay there - if they can do something for her- or send her back to St. Paul's. In true fashion, they don't give you any notice, so I can't arrange for care for Jake. I plan to meet them at Children's, Jake in tow, to see what they can tell us. Part of me is eager for them to determine what is going on, the other part of me is freaking the eff out.

Couldn't choose a worse day. Seriously. Jason's on holidays TOMORROW.

39 weeks and 5 days
Two days away from Ellie's due date. I can't belive we are already at this point. Last night she took two full bottles, a half feed and an ng. Our nurse today is one of the breastfeeding-is-best types, so I had to sit here with Ellie staring at me, boob in mouth, wondering what I was trying to do to her. All I care about if the *milk* not the mode in which she gets it! Oh well, my mil is on a business trip, and Jason has to work today at noon, so I am only here for this one feed. She hung out at the breast for an ng feed. No biggie.
She was just shy of 2500 grams yesterday!!! 5lbs8oz. Amazing.
She really has come so far, from the teeny, tiny frail little baby who was more skin and bones than anything, all red with tubes, wires, cuffs, ivs, and monitors, to a gorgeous, blonde haired, blue eyed, chubby little munchkin, who just needs a little support feeding. It is hard to see the forest for the trees, when we are stuck in the day-to-day life in the nicu, but her progress *is* extraordinary.

My revised homecoming goal is for sometime during Jason's holidays. He is off until the 26th. If that doesn't happen, well... at least my mom will be home again!

Saturday, June 11, 2011

It is a beautiful summer day, and at 50 days od life, my baby girl has never seen the sun shine. I have been with her at the hospital for most of the day, just holding her, talking to her, looking at her.
She took 10mls by bottle, the other 50 by tube. Sigh. Why?
Two babies are going home today, both are 32 weekers. One was here three weeks, the other two! And they're going home :(
Ellie is gestationally the oldest, although ther are twins who are actually older and a little girl who is older. They're all under 37 weeks adjusted. On Wednesday, we hit 40 weeks.
I am ridiculously grateful to all the people that help with Jakob so that I can be here. I am fully ready for the ng tube training so I can be home. God, it has been so, so long. February 9th... since february 9th I haven't lived at home. I've been there for a night or two, but never long enough to get back into a normal routine. I miss it.
I know there's a lot of responsibility that comes with tube feeding at home, but I will have so much more time. I know, I am a whiney broken record, but I am done with this.
I tell myself it is just going to be a few more days- she'll pick up eating in a few more days, but days turn into weeks, and into months. I am snappy with everyone, although I don't mean it. I just don't have any patience left to spare :(
I don't know how I feel about the prospect of going back to childrens. It is so impersonal there, I love the care team at st. Paul's. Love them.
I know it will probably be a short stay, and all along, our coming home journey in my mind, left from the sunny women's/children's entrance, not from a grungy downtown underground parkade. But... oh, I don't know.
The sheets are washed on the crib and bassinette at home. Tomorrow, I am going to get some sewing done, I have a few blankets and a cuddle-wrap to make for a nurse here. I finished the fabric top for the new nicu grad board,too. They're redecorating the nursery, and next week -if we are still here- we will be photographed for the wall art :) that will be fun. Little miss will be a famous nicu baby, hahaha.
I wish I could take my kids for a walk. The buggy is all ready. Washed, hinges oiled...just waiting, like we are, for our Ellie to come home.

Thursday, June 9, 2011

Some days it is harder to deal with Ellie being stuck in the nicu. Feeding is such an issue!
She did great, and then took two steps back, now only taking a few mils by bottle before needing the ng tube to finish the feed. :(
I looked up typical nicu stays for 32 weekers... it is like 35 days. Today is day 48. The typical length for a 28 weeker -Ellie was that size at birth- is 57 days. That is next Saturday, the 18th, and the day of my 10 year highschool reunion. Jay is off on the 14th, and we were so hoping to have her home by then.
She is huge. A nice plump 5lbs and growing. She is not even the littlest bit interested in breastfeeding, and bottlefeeding only happens with major chin and cheek support.
Just like it took forever to wean off the oxygen, I think it is going to take forever to get the feeds figured out.
Can you believe it has been seven weeks? Seven weeks at 2am... I can't.

Tuesday, June 7, 2011

Well, it appears you can't rush a good thing. Ellie decided after 24 hours of oral feeds, that she'd had quite enough, and has now had almost all ng tube feeds for the past 24 hours.


I guess they pushed her too much. Really, she shouldn't need a ton of support while feeding (ie. No squishing of cheeks or pushing up her chin) she should just take to it on her own. She isn't ready.

That isn't to say she isn't getting close. But, we have to wait.

Little miss isn't so little anymore. She is 5lbs!!! Her colour is good, and when she is awake, her tone is great, too.

I confess, I am jealous. There's a baby here, born at 32 weeks, after Ellie. She is the same size as Ellie, younger and going home on Friday :( it is hard not to be sad about it.

Monday, June 6, 2011


She did a full 10 feeds in a row, and then that was it. She is wiped. She slept right right the 830am, 1130am, 230pm feeds, and was looking good for doing the same at 530pm. Too tired :(

So, I know th weekend is still 5 days away, but uggggh, I don't know if she can do it.

Makes me sad to see Linnea at home and not have my girl, too. In other news, jakob doesn't like babies crying or people paying more attention to the babies than to him.

Saturday, June 4, 2011

On the bus, and being downtown everyday, isee a lot of people. I have always been a people watcher, and people's behaviour intrigues me. Why do women do their makeup in public? Especially on transit, where everything is dirty...?
It recently dawned on me, that one day my tiny baby girl will grow into a teenager, and the thought terrifies me. Not because of the drama, or the stress of it all, but because of how society pressures people to look a certain way. Beside me, as a woman who has clearly had a lot of work done, doing her makeup, in an attempt to look like (?) I don't know! Bleach blonde hair, fake tits, whitened teeth... why??
I can honestly say, I left the house this morning, as I do almost everyday, with no
June 4th, finally wire free. We just need the feeding tube out and a car seat test, and we can think about HOME.

Friday, June 3, 2011

Go Ellie, Go!!!

Since yesterday at 230pm, Ellie has had:
230 bottle
530 ng
830 bottle
1130 ng
230 bottle
530 bottle
830 bottle
1130 bottle!!!!!
It takes a fair bit of persuasion to get her to finish her 40ml feed, but she is doing it :)
I can only hope the trend continues, and maybe by early next week we can be rid of the ng tube, and monitors. The change is rather extraordinary!

In other news, hubby's holidays are not what he told me, actually happening a week later from the 14th-26th, not the 6th-18th, so with mom gone, I am stranded for a few days. I can only hope Ellie is ready to come home on Jay's next days off.

My sweet sister-in-law was induced Wednesday night, and is still laboring today, Friday!! She got an epidural this morning, and now I am waiting to hear if she'll deliver vaginally or by cesarean. Really all that matters is the baby getting out safely, and Amber being okay. Soooo looking forward to meeting the baby!

Thursday, June 2, 2011

I've got the whole world in my hands
Wow, I can't believe how much I missed Ellie. It didn't hit me until I saw her, and instantly my heart broke at the absence. Poor baby got no snuggles yesterday, there were only 2 nurses for 7 babies. She got fed, but no bath. She was all greasy today :(
On the plus side, I got to give her a bath! She is now 2171grams or 4lbs12oz!
I pumped when I got here tonight, because she was attached to a feeding syringe and I thought she was being fed early. Nope... so there was bothing left for her to nurse, and I gave her a bottle. She took the whole thing. I know a lot of people think I should breastfeed when I am here, but I find the test weighing really stressful, and I don't want to starve her. I think I was to bottle feed while we are here and change to boobs when we are home. I just want her home. And bottle feeding might get her home sooner. Six weeks... 42 days of nicu life.


I haven't seen my little girl since Tuesday morning! It seems like forever ago!!!

Yesterday, Jason and I spent the whole day with Jakob. Little man has been struggling with things, and since my mom has gone back to London, and MIL is on baby-watch for my SIL, he's feeling a bit stranded.

We took him to see Kung Fu Panda 2 in the morning, and he barfed his Fruitopia at me. That's what I get for feeding him junk - silly mama. After the movie, he played for a long time at the park, and then we came home. We talked about going to see Ellie, but I wasn't entirely sure why Jake threw up, and he was whinier than usual, so I decided to stay home, in case he was legitimately sick. It was nice to spend the day with my boys <3

Today, Jason is working, so Jake and I had the day to ourselves. We went out for breakfast, then did a little shopping at Michael's, and went to watch the planes taking off at Flight Path Park. Jakob absolutely loves watching the planes.

I am just waiting for Jason to get home, so that I can make dinner, and head down to see Ellie. I hate that I haven't been down there, but there are times where I just need a little more time, and sadly it means not going to her. The nurses are so amazing though, they try to convince me not to feel guilty.

It's not so easy...

She is going to be 6 weeks old tomorrow. SIX WEEKS. Holy eff... Where did the time go?