Sunday, February 28, 2010

Kingsley's Video

I made a video of Kingsley's time in the hospital.  I am not very crafty or creative, so for every event or milestone in the girls' lives I have made photobooks and photo montages to music.  King had such an eventful first 11 days, I figured it warranted both, so here's the video.

This doesn't seem to want to embed fully. I think it's showing up only half of the shot? Here's a link to the full view if it drives you mad: King's Video




Saturday, February 27, 2010

Obsessed and Alone!

I'm addicted to the Olympics. Rachel has begun yelling GO CANADA! at regular intervals when the TV is on. She tells me various ways I can win gold medals around the house (usually  helping her or reading to her).  What on earth am I going to do on Monday when it's all over??

Well, aside from that there have been a few other things going on this week.  For one, I went to a support group last Monday for parents of children with special needs. But there was a snow storm and I was the only one that showed up. I ended up having tea and chatting with two social workers for two hours. One of them I knew from when I volunteered/worked at TVCC, so we caught up. They have assured me that the other parents are going to be there next week. :p

Yesterday was a big day for us as well. I had my 6 week follow up appointment and I'm healed! Well, as much as I can be. I got the green light to start living normally again. To celebrate, I got 12 workout DVD's from the library. It feels amazing to move again. It was nice to see my OB again, but as I was leaving I realized that may be the last time I see her. That's so sad! And on my drive home I decided that if/when we have our fourth child I will go back to her and get a doula, instead of going back to the midwives. I think I need her to get me through the first 4 months. She knows me and she'll be an amazing support to get through the great unknown.  All hypothetical, for heaven's sake, Kingsley is only 6 weeks old! :)  Although, I have started loading up on the 4mg/day dose folic acid already, just in case.

Friday was also our nanny's last day. She was very sad to leave us. Rachel keeps talking about her. Ahhh... the two of them will move on and forget all about each other in a couple weeks. Today was my first day out on my own and it was... alright. We survived and the house is relatively tidy.  I convinced the girls to shower with me, which was a new experience and one that I'm sure Cordelia never wants to experience again! We had leftovers for dinner and honestly I have no idea how I'm going to be able to MAKE dinner if Kingsley keeps having his fussy/power nursing phase between 4:30-7pm every night.

The last big exciting thing is that Jeff starts at his new firm on Monday! He's been working insane hours the last week to finish up at his old firm.  Poor Cordelia has learnt to lift her palms and shoulders up and say: "Daddy?" as if to say: "Do I not have a Daddy anymore? Where the hell is he??"  Rachel asks every morning if today can be Family Day again because I think that's the last time she's really gotten to spend time with him. It's going to be a rough few months, but it'll be worth it in the end. I hope he'll be happier at his new firm.

Rachel's Olympic torch

Yelling at the TV. Jeesh! Where's she learn that? ;) 
This was during Maelle Ricker's final race!
Is there anything more beautiful than a sleeping baby?
The reluctant fan. ;)

GO CANADA GO!!

Sunday, February 21, 2010

Days with a Newborn

My girlfriends still joke about the first month (or two ;)) after Rachel was born. I sat myself down in the lazyboy in our TV room and lived there. I had food, drinks, the remote, a diaper station, a camera, my nursing pillow... I was set. I put my feet up and enjoyed my new baby.  It was March and ugly. By the time the sun came out, we were ready to start living.

But it's hard with a newborn. Even when Cordelia came and Rachel was there which didn't allow me to cement by butt to the couch (try as I might!), I still found it hard to really take advantage of the days. Whole weeks go by where I would look back and wonder what the heck I did with my time?  The stroller and van did not leave the garage. My hair dryer stayed in the cupboard.  My days were filled with diapers, feedings, singing, colouring, crying, soothing, dancing, bathing, and napping. I start to come out of the baby fog somewhere around 4 months, I think. By then I've figured out how to shower before noon without sacrificing sleep and I can get everyone out the door in under an hour!

A couple days ago, I realized I was having one of those days. It was suddenly dinner time and I had no idea where the day had gone. Or the day before. We hadn't done anything exciting or noteworthy really, just a plain old day.  It made me all anxious, like I was doing something wrong or missing something. Then, like all things meant to be, I found this quote on another blog. It's so perfect. One day I'm going to miss these boring days where nothing happened other than endless snuggles and coziness spent in jammies.  I think it should be mandatory that at least half of your mat leave is filled with days like that.

"Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day, I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return."

Saturday, February 20, 2010

Focus on the Positive

Alright, here are some good things to focus on:

1. I am no longer pregnant! :) Which means I can breathe, no more heart burn, I can touch and see my toes, I can sleep on my stomach, I can drink, I can put my boots on by myself, I can go through the whole night without a bathroom trip.  I am such a lousy pregnant woman!

2. I'm starting to heal. I can carry Cordelia just fine, I can walk around without feeling it, and moving around in bed is fine. Finally!  One more week until I get my green light.

3. Kingsley is doing perfectly. Right now he doesn't have any complications.  He is a beautiful angel sleeping here beside me. He slept for 6.5hours straight last night. He's so amazing.  Newborns are incredible.

4. The Olympics are rocking my socks right now. I could watch them all day, every day. Ah, wait - I do! :)

5. Jeff is starting a new job in one week. It's a really good move for him and for us. I'm so proud of him!


Tuesday, February 16, 2010

Sometimes Things Still Suck

OK, reality check. Spina Bifida sucks.

It's just a few moments every day where it comes back to me and my happy baby bubble bursts.  Like how I am constantly forgetting that he needs medicine twice a day. Or when he does something inside that prevents me from being able to get the catheter in far enough.  Or when I read a random blog or online post about how many hospital visits the typical kid with SB has. I keep putting off measuring his head because I'd rather not know. I measured. It's 38cm, but he was mad when I was trying to do it, so I don't know if that's accurate.  He peed on me today and I got excited. Then sad that that was something to be happy about.
 
I hate these parts of my day. I like living in denial.  I like pretending that he really is like every other one month old. I block the cath'ing stuff out of my mind - it's just another element of diaper changing. I do his physio while we do yoga, which is something I did with the girls as well (the yoga, not the PT) and feels normal. 

He's just so sweet and healthy and perfect, I feel so sick thinking about the problems and complications and surgeries that are in his future. It's all inevitable, it's not even as though I can hope for the 'best case scenario' because even that sucks.

I'm tired and grumpy and rambly and I need to stop staying up late watching the Olympics, so off to bed I go!

Sunday, February 14, 2010

In Honour of Canada's First Gold...

Another picture day. :)

Really, Kingsley is just doing so well there's not much else to say. He got me up at 4:30am this morning so I'm only awake right now thanks to caffeine and Olympic buzzing. And speaking of Olympics...

My mini Canadian fan

My medium Canadian fan

Princess Canada

Big fans. He's trying to see the TV ;)

All three. They wouldn't all look!

Watching speed skating!

Friday, February 12, 2010

Paeds Appointment

Kingsley had an appointment with his paediatrician this morning. He's 10lbs 6oz, which may seem like a lot considering he was only 7lb 13oz a short 4 weeks ago at birth, but Cordelia was 11lbs4oz and Rachel was 10lbs 13oz. He's still my little lightweight!  Didn't feel like it though when I was lugging his big ol' bucket carseat down the street from where I was able to find parking. I'm pretty sure that was not on my list of things-it's-safe-to-do-post-c/s, but there you are.

His head is still 37cm, which is where it was on Tuesday, yay! 

I also talked to our social worker and continence nurse today.  I've been unsure about what's going on with the cath'ing and peeing in his diaper, but she said it's okay for him to be peeing on his own and that we should keep up with the cath'ing.  She also said we could cut it down to 4 times a day and couldn't believe I was staying up until midnight every day to get in the 5th.  No wonder I'm so tired!

We're all geared up for the Olympics today.  So sad to hear about the luger who had the tragic accident this morning.  How devestating.  I hope the rest of the games go without any more accidents. Looking forward to the opening ceremonies tonight!
Hey! Look at me! Wearing clothes! Aw, little Kinger is so cute in little man wear.
LOL, I love his face here. Poor thing, he had to wait 4 weeks for his first bath!  Both girls were on hand to keep him entertained though. He didn't love it, but didn't freak out too badly either.
Sleeping in more little man wear.  You'll have to indulge me a bit. He spent his first 2 weeks in just a diaper and the next 2 weeks in backwards sleepers. Real outfits are so much fun!
Rachel was proudly showing Kingsley her Valentine's candy bracelet that she made. Clearly, he was fascinated.
Aw, poor Rach. Maybe Cordelia will be more excited about it when she wakes up.

Wednesday, February 10, 2010

Things you never saw youself doing...

So, having Kingsley has introduced me to a whole bunch of experiences that I never imagined myself having.  This week I had yet another one. I sent my mom out to do some recon on who had the best price on KY Jelly. Yep, I'm looking for the best deal on KY for my son and today I bought it in bulk from Costco. Good times.


It's for catheterizing him, in case you were wondering. ;)

Picture Day - How Far He's Come

All dressed up in clothes! I'm so excited that he's actually going to get to wear the 0-3m outfits he has. I was getting worried that he'd outgrow them before he was allowed to wear closed-back gear!

Cordelia, attempting to eat Kingsley.

His shunt the night it was put in.
His shunt now.

His incision the day after it was closed.
His back now (don't know why it wouldn't stay turned the right way).

 This outfit was one of the first I bought for Kingsley after we found out we were having a boy.  Jeff and I searched online to see what was out there and this romper just made me laugh!

Gratuitous picture of Rach and Delia flying away in their star ship.

Tuesday, February 9, 2010

Ultrasound Results

Everything is good! His head is just big and growing for normal reasons, it seems. His shunt is working and he's all healthy.  We even got the okay to do all of the 'normal' things! I can wear him in a carrier, give him baths, hold him upright, put him in his swing, let him sleep on his back, put his clothes on the right way... YAY!!!!  It's earlier than I thought, but that seems to be Kingsley's way - always wanting to go ahead of schedule. What a superstar. :)  I'm so relieved and so excited to do all the normal things!

Monday, February 8, 2010

Appointment Set

He's going in tomorrow for a head ultrasound, followed by an appointment with his neurosurgeon.  I can't decide whether I should be nervous about how fast they got him in or relieved. Are they just getting us in to placate the new mom who is all paranoid, or is there a valid reason for my concern?  I guess we'll find out tomorrow. For what it's worth, he is doing just fine today. He's sleeping, eating, alert, content... No other indicators of a shunt problem.

I forgot to mention earlier, but after posting last night about King having one last stitch - he lost it! All smooth and pink now. If I remember I'll take a picture because it's amazing how different it looks after only 24 days. And one of the scabby parts on his shunt incision is hanging off. It's gross and I'm afraid to touch his head in case I accidently pick it off and make it bleed. Blech.

I have decided that I am healed. ;)  I started my Biggest Loser wii game today. A 4 week program with Jillian.  It felt awesome to work out, even if I did have to skip a bunch of the exercises (ab and core work).  I have 25 (more) pounds to lose and I'd rather like to get on with it.

Called the Nurse...

I called is neuro nurse this morning. His head is still 37cm. A week ago it was 36cm.  He doesn't have any other indicators of a shunt malfunction but I'm fairly certain your head is not supposed to grow 1cm in a week, even if you are my big-headed kid.  His nurse is going to get him in for an ultrasound either tomorrow or Wednesday.  I'm not even thinking about it.  There is just no way he is going to have shunt problems this soon. 

Sunday, February 7, 2010

One Stitch Left

That's all Kingsley has in his back! Just one big knot thing at the top, but the rest have fallen out. It's still pink and new looking though I'm told that it will continue to look better over time. I've never had any sort of incision myself so I have nothing to reference. His head shunt incision is scabby and dried out. I have been resisting the urge to pick at it everytime he nurses. I have never seen a shunt before so I have no idea how that will look when it's all healed. I imagine it will be hidden by his hair.  The little shunt incision in his stomach is healing as well. The stitches are falling out on either end, but the middle ones are still there. I'm so impatient for his healing to happen. Maybe because then we can ignore the whole SB thing again, for the most part.

I'm finally healing as well! I'm off medication for the most part. I cleaned most of the house today and I feel just fine. That hasn't happened in months! I mean the lack of pain, not the cleaning ;)  And even though they say I am not supposed to, I've been picking up Cordelia again. Life continues.

The elephant in the room is the fact that King's head size seems to have gone up. It may be my lousy measuring abilities, but it may be something else. He seems completely fine otherwise, nothing to indicate anything wrong with his shunt. But I'm going to call his neuro nurse tomorrow. I'm trying not to be scared.

He's grunting beside me now which means time to cath and nurse and get to bed.

Thinking Back

I read another woman's blog recently. Her child was born with a birth defect that she wasn't aware of until the moment her baby was handed to her. She says she is glad she didn't know when she was pregnant. Her theory was that she would not have been able to enjoy her pregnancy otherwise and would've spent it crying and being depressed.

I often think about what things would have been like if I didn't know when I knew. What if we didn't find out until his birth? Would that have been better?  I still don't think so.

If I hadn't found out, I would've stayed with the midwife team. I would've had a natural birth. They may not have noticed right away because of the vernix covering him. They would've laid him on my stomach and we would've seen the hole in his back, breathing. There would be panic as they snatched him away and investigated. Jeff and I would have no clue. We'd be at the wrong hospital - they'd have to take him over to LHSC while I was stuck counting the minutes until I could leave St. Joe's to be with him. I could throw up just thinking about it.

We wouldn't know that his sac had broken in utero and I'd forever wonder if I had caused more damage through birthing him. What if his back was damaged through birth?  We may have never known where his defect was since we wouldn't have had the MRI and the billion ultrasounds.  The first week was so hard, I can't imagine having to go through all that without warning, without knowing what was going to happen and why. We wouldn't have our nanny still, we'd be scrambling to have the girls looked after while we stayed at the hospital. 

Finding out at 21 weeks was no picnic. It did suck nearly all the joy out of my pregnancy. It made me horribly sad.  But the alternative is so much worse. If we do decide to have another child, there's no question I'd go through all of the testing and screening again because even though the joy was sucked out of my pregnancy, there was so much joy on his birth day and every day since then. It's been scary, but we were ready for it and for him. When I look back on his birth, I remember the fear but also the excitement and the pure happiness of getting to meet him. We weren't sad that day.

Thursday, February 4, 2010

Just Pictures

I have nothing exciting to post about except that the girls are completely in love with Kingsley and there is nothing cuter. Rachel always asks to hold him and today Cordelia insisted that she hold him as well. She kept getting mad when I tried taking him away.
Such a proud big sister!
And a proud middle sister!
Getting some love.
They are constantly kissing him.
While they were there, Kingsley stuck his hand in Cordelia's mouth. The natural reaction to that is apparently to lick!
Cor gets so concerned whenever she sees King's incisions. She makes a very concerned face, points, and says "Ohhhh!!" every time. Here, she was kissing his boo-boo better. His shunt incision is all dry and scabby right now which makes it more noticeable.
Cuddling on the couch with Rach.

Wednesday, February 3, 2010

Cushy, Cushy Life

I'm not sure I mentioned how cushy life is for me right now. :p  When I went back to work in May we coudn't find a home daycare provider in the area that I liked so we ended up hiring a nanny. We still have a nanny now. She is here from 8-5. She makes all the meals for the girls, dinner for all of us, helps with the cleaning and plays with the girls.  I just have to do what I need to do. So, aside from caring for Kingsley, I can run errands or nap or sit here and blog at leisure. It's a sweet life, but it's ending at the end of the month. :(  Once my recovery is 'done' her contract will be as well. Then real life will begin!

It's been a great help though, especially when Kingsley was in the hospital. It allowed me to be there whenever I wanted to without having to worry about Rachel and Cordelia.  It was also great when I was waddling around 9 months pregnant and afraid to do anything that might bring on labour. Nannies rock. I'd be exhausted and beat up without her.

At the same time though, I really am looking forward to real life beginning in March. It'll mean Kingsley is near the end of his recovery, I'll be allowed to start tackling this horrid baby weight, I can pick up and play with Cordelia again,  Rachel and I will be having birthdays, spring will be around the corner... Good things are coming in March.  :)

I did forget...

I forgot to thank everyone at work! Truly, there were beyond supportive. I realize that I work with mostly women who have either raised a family or are at the same phase I am, and that I work with children, so it is a population that should be sympathetic to my situation, but they were more than that. No one complained (to me anyway :p) when I needed to reschedule, suddenly cancel, or just plain take off a million days in the last few months.  Even when I went off suddenly in December, everyone immediately covered for me and sent me on my bed-resting way without a worry. There was never any guilt from them or questioning the endless appointments. My director even encouraged me to take the whole day off when I had appointments to make sure that I had time to absorb the information and spend some time with my family instead of worrying about getting back to work.  They asked questions without prying and let me talk about Kingsley when I wanted to. But most importantly, they were excited for him and happy that he was coming.

I have no idea right now what will happen in a year as far as going back to work is concerned. I love my job and I love the people I work with. But it may end up that Kingsley and the girls need me more for awhile. Three kids are a lot to deal with! I would be sad to leave work, to be honest. For now, nothing needs to be decided for at least 6 months, so I'm going to just enjoy the break.

Monday, February 1, 2010

The Award Goes to...

I feel like there is a huge long list of people that I need to thank.  I can't imagine having gone through this experience without so many amazing people, so here goes.

First, my parents and Jeff's mom have been unbelievable. They have stopped their lives to be here with the girls whenever we need them, to visit us in the hospital and bring us stuff, and to just provide support.  There is no way to thank them for what they've done for us.

I have the most amazing groups of friends. Most are single and/or don't have children and with every pregnancy I wonder if this is what will separate us. One of my big fears was becoming the Special Needs Mom and totally isolating myself from the people in my life with normal lives. But that hasn't happened at all. They've been endlessly supportive and caring and wonderful... why would I have expected anything less??  They help me feel normal and just love Kingsley.

My online family... good grief, what would I have done without them?? I have met the most amazing women in the past few years and the love and support they've given me has been nothing short of overwhelming. They are always there when I have questions, need to vent, feel like I'm losing it, or just need a distraction. They make me laugh.

We've definitely been making the rounds in regards to hospitals. We've probably been in contact with over 100 people through this and I can count 3 that I would like to kick. The rest I would like to name and praise personally, but my memory sucks! :p  My OB, of course, is fabulous.  Kingsley's neurosurgeon and neuro team are heroes. The nurses for both of us while in the hospital were so caring and kind and amazing, in the birthing centre, antenatal, PCCU, and especially the Ill Infant floor. They made us feel safe having our son there. 

So, there's my thank you speech. I'm going to go to bed and think of 100 more people I should thank. And then I'll forget by the morning, so consider yourself thanked in my head ;)
Related Posts with Thumbnails