Sunday, May 23, 2010

A miletstone especially large for our boy


He ca only hold it for a few seconds at a time, but it is an amazing start at three months old. He will need this skill like no other so, best to start early.

Monday, May 17, 2010

"Cry me a river. I practically stew in other beings' bodily fluids daily."

Yes, these words crossed my mind. My dear sweet husband complained about cleaning up pee or something or other and this was my thought on the matter.
Really though, with a potty training nearly-3-year old, a newborn with a kidney condition, a cat with failing kidneys and a hairball problem, it isn't far off the mark. I feel like I am constantly cleaning or preventing the need to clean up someone's bodily fluids. I am constantly dealing with poop and pee and vomit. I don't remember this clause in my contract.

Saturday, May 15, 2010

A day in the life...

I kept meaning to post this, but kept forgetting. I was reminded/inspired by, my friend, Jenn's post on her blog today.
I have been asked often what I mean by "watering" Orin and how often I do and why do I look so damned tired *laugh* Let me run down what our day typically looks like:
2am - I wake up to run a bolus feed of water for Orin. I try to keep him sleeping for this one.
5am - Wake Orin to eat (if he hasn't already awoken) and run a bolus feed of water.
7am - Orin wakes to eat; I get Isabel up and ready if she is going to daycare
8am - Bolus feed of water for Orin
9am - Orin back down for a nap
**Izzy and I eat and watch CBC Kids cartoons while Orin naps; if she is at daycare, I eat and do laundry
10am - Orin wakes again; Izzy has a nap
11am - Orin eats
11am - Get Isabel's lunch together
12pm - Orin gets water; Isabel eats
12:30/1pm - Both kids go down for a nap....lately,this often takes work for both of them for some unknown reason
**While they nap, I eat, switch laundry, load dishes and catch a moment or two of TV/internet
1:30/2pm - Orin is back up and eats
2/2:30pm - Isabel is back up and Orin gets water
**If we are going to get out during the day, we try to do it now...sometimes we can get out in the morning, but mornings are pretty hairy. Isabel also has a snack during this period and if we don't go out, we go for a walk, play in the yard or on the floor. I also try to get more laundry done at this point.
4pm - Start working on supper
4:30pm - Orin loses his mind because he is hungry and starting to get really tired because he is not a fan of napping, so I strap him on in the Moby and dance around while working at supper and entertaining Isabel
5pm - Dave gets home and takes over supper/loading the dishwasher while I feed Orin
5:30pm - Water Orin/entertain Izzy
6pm - Eat supper
7pm - Bath time and bedtime routine for the babes (Isabel gets dressed, teeth brushed, reads books; Orin gets dressed, fed and has water)
8pm - Bed time
**We have a little time to relax after the babes go to bed, but I also spend this time folding laundry, tidying toys a little and sterilizing the equipment we use for Orin
11pm - Wake Orin to eat and do a bolus feed of water; go to bed

Here is a picture of the drying tray after a typical sterilizing run, which happens every two days typically:


I scoured YouTube for a video of a bolus feed using an NG tube, but couldn't find one. I may make one just to show folks what it looks like. He tolerates them well and it is working, which is all that matters to me :)

My dear sweet babies are flourishing and happy, so every day is worth it :) Here are some pictures to show them off:










Wednesday, May 5, 2010

The day has finally come. We are making the switch...

to cloth diapers. I have talked about it since before Isabel was born, but was a little unsure of my ability to manage a cloth system and very unsure of Dave's willingness to use them. Well, our wee boy and Pampers have joined forces to leave us little choice.
Pampers introduced their "Dry Max" technology very recently. I thought little of this. Orin started getting bum rashes. Again, he is a baby and this happens, so I thought little of it. Then I came across some information on Facebook about the new Dry Max diapers causing chemical burns and serious rashes on baby's bottoms that made me wonder about this rash, that wouldn't clear up for longer than an afternoon and would flare up after only 1/2 an hour in any one diaper (thereby eliminating duration in dirty diaper as the culprit). The same day, Orin's wee bum broke into a rash so bad that it was raw and even bleeding a little :( This was the straw that broke the camel's back.
I had a small stash of cloth diapers in the house that I had purchased early in my pregnancy, thinking we might do cloth with this wee one, but had chickened out about when we found out he had NDI (I figured he'd soak them in no time). I got them out and started him in those and within a few hours the rash started to look better. I put him back in disposable for the night and the rash was back with a vengeance by the 3:30am feed/change. Proof was in the pudding (goodness, I am on a roll with the fun turns of phrase *lol*).
We did a few days in cloth and he hasn't made any terrible messes (i.e. leaking or soaking too fast), so we are going for it. I am sure some are asking why we don't just try another disposable and, honestly, for the night time, we will have to because no cloth diaper will be able to hold this boy's pee for longer than a few hours. That said, I hate the impact of disposables, both environmentally and to my pocket book. If cloth is going to work, I am excited to give it a go.
Our stash is still rather small, we have 6 pocket diapers, various inserts and a bunch of Chinese prefolds that I will be using as liners (I tried to use one as a diaper and he soaked it in 1/2 an hour....laughable). I bought 6 bamboo all-in-ones on Babysteals today and will keep my eye on kijiji for more. I will also be looking for accessories, but all in good time.
There, I've written it out, so I am committed and the whole internet can hold me to it ;)

Wednesday, April 21, 2010

Best-laid Plans

So I had every intention of keeping up with this. Let me tell you how that plan went awry.
I went on maternity leave on January 15th out of sheer exhaustion and in a great deal of pain due to a pregnancy-induced condition in my hips. You would think that this would give me lots of time to blog, but instead I went into nesting mode, tidying the house, prepping freezer meals, getting errands run, attending my multitude of doctor's appointments.
Nearly a month flew by...my due date came and went. I was in false labour from January 26th (so we didn't end up planning anything serious for my birthday just in case). Finally, on February 11th, labour really picked up. I got some sleep that night, but by early morning, it was looking good. It kept intensifying until we finally decided to go to the hospital around 10:30am. Labour moved along well and my wee boy was born at 2:18pm.
If you followed my other blog, you'd know that I am a carrier of nephrogenic diabetes insipidus. My wee boy has NDI and has the distinct honour of being one of the earliest diagnosed kids that our doctors have seen. Normally, symptoms show up around day 4 of life, but Orin was diagnosed on day 2.
Here is a summary of the first few weeks of Orin's life as posted on ThatBoard:

Orin is three weeks old today. He was diagnosed with nephrogenic diabetes insipidus on day two. The earliest diagnosis of this condition in recent memory at this hospital. He has been a mostly permanent resident of the NICU since then.
The long and the short of the condition is that his kidneys don't concentrate his urine properly, meaning that he ends up with a build up of salt and can dehydrate very quickly.
So for Orin, this has meant a stint on IV fluids. His first one was in his hand. That was rough, especially since the nurses told me that it took several attempts. When his body started rejecting that one, they jabbed him another 6 or 7 times and ended up putting one in his head. I cried when I saw him with that one. His body started rejecting that one within a day so they moved it. Another in his head. One of the worst moments of my life happened with this IV when, in a fraction of a second, he got his finger wrapped in the loop of tubing taped to his head and started to pull. Luckily, Dave and the nurse intervened quickly because I became mentally paralyzed. Between exhaustion, stress and my fear of needles, there was nothing I could do, my mind went blank and I just started to pace in circles while my baby screamed. :'(
when he blew out the 3rd IV in less than a day of getting it, the decision was made to put a central line in. They were hoping to go in through his arm. The second choice was his belly button in one of the major arteries - very dangerous because if it came out, he could bleed out very quickly.
Of course, they couldn't get it in his arm, so belly button it was. I cried really hard when I saw him after this. A nurse cried along with me because she said that she could see my heart break when I saw him. He slept for nearly 6 straight hours after the procedure because the stress of it wiped him right out.
This central line meant my sweet boy was on limited access because we didn't want to jostle him about too much with that line in so he came out for nursing and that was about it.
Things are a little blurry at this point, but I think he had the line in for 4 days, at which point it was felt that he was out of the real danger zone he was getting into and we could start working on methods of getting fluids into him that would work at home.
Since then, we have been trying various combinations of medications (he is on three right now), salt solution, sterile water and breastmilk in our attempts to get him gaining weight. Unfortunately, none of these methods has worked yet. We have been sent home on a couple of day passes, which was absolutely wonderful.
Unfortunately, we are in hospital again because he is still not putting on weight. Yesterday the decision was made to put a feeding tube in to try pumping water into him that way. If he hasn't put any weight on by tomorrow, I suspect the paediatrician is going to put the IV back in. Just the thought of it makes me feel sick and teary because it feels like we are moving backward rather than forward :(. What's more, the paed wants me to start supplementing him every second feed with formula because he is worried about the lack of calories in the water. I have been saying the same thing since they started pushing water into him before BM, but no one listened to me. Now, my milk supply has diminished some AND Orin is getting fussy at the breast because it is slower flow than the bottle he is taking water in. All that said, supplementing with formula does not work for me at all and is entirely unnecessary according to the specialist at the IWK and the neonatologist here, so I have asked for a few days of making the breast first choice again before we take any other action. I have purchased low flow nipples for the water bottles and fenugreek in case I do struggle to keep up with him on my own.
I found out from a nurse that the paed (who, I admit, is very knowledgeable, but is lacking in bedside manner and creative problem solving skills which are needed with a condition as rare and challenging to manage as thus) foresees Orin being in hospital for another two weeks. I could really use some positivity to get us out sooner. I am being allowed to stay because he is breastfed exclusively and pumping doesn't work for me (I get abou half as much with the pump as I would estimate the baby gets) and while I am very grateful, I am missing my home and family like crazy. Isabel has changed so much over the last 3 weeks - she is in a big girl bed, she is using the potty, she uses personal pronouns consistently and is just SO bright. It makes me really sad that I am missing it :(
Anyway, that is the gist of it. the absolute worst things about this are missing Isabel, what this seems to have done to her trust in me and the feeling that Orin may never be *mine*. It still feels like he belongs to them and I am just a bystander waiting for them to hand him over. I certainly don't feel like his mom given how little I can do for him. :(



The good news is that, as soon as the feeding tube went in, things improved IMMENSELY:
When we started the NG tube, we struggled to find the magic combination of water and caloric top-up (20mls of formula or BM depending if I could pump or not). He gained and lost at random. Then, one day, we found it and he has been gaining since then. For instance, in just over 4 days, he has gained over 320g. That's nearly 12oz for all you imperial folks out there. Impressive, given that we realised on Friday that he'd grown 1 1/2 inches in length since birth!
While it can't be a long term solution, because the NG tube is working so well, we are leaving it in for a while longer rather than trying to reintroduce bottles again just yet. This will require a ridiculous schedule that will mean we really won't be able to go anywhere or do anything until that changes but we will manage.
The great news is that the doc is going to send us home this week! I am so ready to go home. I can't say that I won't see the inside of this hospital for a long time, as much as I would like to, because we will have to come in for daily weigh-ins and regular bloodwork for a while yet, but that is perfectly alright with me.


Since that update, we've been home for about a month. He has continued to gain like a fiend. We have been going to the hospital for check ups on a regular basis and the doctors are SO pleased and impressed with his progress. We are doing so well at home. We've settled into our routine. He is such a wonderful baby. Isabel is such a wonderful big sister. The best part, Orin is now beginning to take water in a bottle, which will mean the eventual removal of the NG tube!

Alright, I feel better having updated you all. I will post a more detailed update of what we've been up to since the hospital, but for now, I hope you understand why I haven't been blogging.

Thursday, January 14, 2010

January 11-13


Sliding with daddy and the dog.


One of the movies that our doula gave us to watch in preparation for birth. It was REALLY interesting!



Two for the price of one. I have been working diligently at unpacking and washing and rearranging baby stuff in preparation for the Newbie's arrival.

Sunday, January 10, 2010

Slack on posting, but not on picture taking!

January 7th

We've been working all week to reclaim our house from the toy explosion that had taken over.

January 8th

Some downtime with hubby and two other men, charming Italian plumbers ;)

January 9th

My two favourite people strolling the mall toward our "coffee" date at Starbucks. We all had hot chocolate, but everything purchased at Starbucks is considered coffee by the wee girl...I may have started something.

January 10th

This is a cheater as it was technically taken last night, but I like it too much not to include it. Perhaps that is what I will do every Sunday, post my favourite picture from the week that was not used in the regular posts.

Wednesday, January 6, 2010

January 6th


A common accessory in our house....soft and warm, but sharp and smelly....catch 22.

Tuesday, January 5, 2010

January 5th


My iPhone got a pretty new outfit today.

Monday, January 4, 2010

January 3rd & 4th

January 3rd

It snowed....a lot...over the last couple of days. It isn't going to let up until Wednesday and even then it is only for a couple of days. There is storminess/snow predicted for Friday through Sunday and possibly into next week.

January 4th

The midnight snack of champions! I love my homemade peanut butter balls, but PB causes serious heartburn for this pregnant lady. In an effort to combat that, I complemented it with a large glass of milk and two Tums. Here's to sleep uninterrupted by the fire-breathing dragon I seem to have swallowed.

Sunday, January 3, 2010

Project 365 - January 1st & 2nd

January 1st


I committed on both Facebook and Twitter to complete this project as y only resolution for the year. With an adorable kid, another on the way and a love of photography, it shouldn't be too hard :)

January 2nd


We undecorated the tree and took down the Christmas decorations today. Taking it all down is nearly as much fun as putting it up in Isabel's opinion. Below is the second runner up for the Jan 2nd slot.

Friday, January 1, 2010

¡Olá!

Everyday is an adventure. This has been my motto for a while. This blog will reflect that. It will be a combination of Project 365 and just general blogging.

Currently, I am doing most of my blogging at my pregnancy blog, Two Lines. However, once the Newbie is born, my blogging will move here for good.