Monday, April 30, 2012

The Knife

Sometimes it's when you're having the best time that life sneaks up behind you and sticks a knife in your back.

Saturday we took Kaia to the zoo for the first time.  I love the zoo.  When Aidan died it was one of the many things I feared I would never get to show a child of my own.  Although Kaia's too little to fully appreciate it, I made sure to bring my camera so that her zoo trip will be well represented in her book of 'firsts'.

But it wasn't all smiles and giggles.

We went with our friends, male J., female J. and their 22 month old daughter C.  Female J. told me back at the beginning of March that she was pregnant with her second child.  Two weeks ago however, in the middle of Kaia's bath when we were elbow deep in bubbles and bath toys, Brian's cell phone rang.  It was male J. calling to tell us that their 12 week ultrasound showed no growth beyond 8 weeks. Baby was gone. Had been for awhile. D&C was scheduled for a week ago Friday.

Hearing their news dredged up old hurtful memories for Brian and I. Remembering that sinking sick feeling when the ultrasound room gets a bit too quiet. The shock of biology gone awry. The awkwardness during calls to friends and family to share the bad news. Shelving hopes and dreams far in the back of the mental closet. The discomfort of never really knowing what happened, or how to prevent it from happening again.

A week out, J. & J. are doing okay.  They say they are at peace with what happened. But, I can only imagine that next time, this experience won't be far from their thoughts.

Then Saturday night during my last pump of the day, I was reading through my blogs like I always do, while also tooling around on Amazon in search of the perfect baby shower gift for my cousin. The shower was the following day as my cousin was in town. She and her husband live in the States so it was deemed easier for everyone to celebrate here, but send gifts in the mail via Amazon. Thus avoiding her having to shlep through airports with a million baby gifts in tow. I left buying her gift to the last minute and therefore I had to choose between the inevitable 'less cute' baby items on the list.

In the midst of this I clicked over to my blog and saw a new post from Becky.  Oh that's right, I thought, Becky's C-section was scheduled for today.  How nice, her 'rainbow' baby must be here!

Then I read her post.  And re-read it.  And read it again.

Her daughter had been born almost a week ago. 

She died two days later.
I'm pretty sure I didn't breathe for a full minute...all the air seemed to have left the room.

Oh no. that can't be right. It just can't. Her account must have been hacked. Someone must be playing a sick joke. Becky's son died last year. This was her much hoped for, much wanted, much needed rainbow baby. This baby is suppose to be alive and healthy and learning how to eat and poop and delighting everyone with her grip strength and adorable baby coos. She is NOT suppose to be dead. Definitely not.

I was so ANGRY. I wanted to launch my computer across the room. Kick something. Scream at the fucking UNFAIRNESS of it all. Everyone knows that any baby born after the dead one is suppose to be given an automatic pass. Nothing bad is suppose to touch them. Nothing terrible is allowed to happen. Dead baby moms who go on to have a subsequent pregnancy are understandably nervous wrecks through out the whole thing...but in the end everything is suppose to be fine. The new baby is suppose to arrive big and healthy and full term, wondering what all the fuss was about. If the new baby could roll it's eyes and sigh like a teenager it would, "Jeez mom, relax, I'm fine!". Big kisses and hugs and happy tears all around.  Roll credits.

One dead baby in a lifetime is more than enough.

It immediately brought me back to last year on March 24th when I was convinced my rainbow baby would die. In those weeks after my water broke I was in turns numb, heartbroken, enraged, despondent and so, so bitter. That termination was once again being offered as a suitable way to end my pregnancy made me want to kick the doctor in the teeth. I didn't know what to do. I spent a lot of time spacing out, staring at the wall. That is, when I wasn't crying the ugly cry. The pain was overwhelming. All the dignity, grace and even acceptance I had fought for in the 11 months since Aidan died was immediately ripped away. It ran out of me in one big gush along with my amniotic fluid.  I was SO ANGRY, so hurt, and yet so empty.  How could this happen AGAIN?  It felt like the universe was conspiring against us.

In those weeks after my water broke, I feel I got a small glimpse into what a second loss would look like. I learned that baby loss after baby loss is not grief added together, the way 1 + 1 = 2.  No, a second loss is grief squared. The depth of loss is compounded in a way that is almost too much to bear. A dizzying fall down a cold, dark pit that has no bottom. There are some things that you just can't come back from. That Kaia beat the odds and my second pregnancy eventually ended well is the biggest and best gift we have ever, or will ever receive. We never ever forget how lucky we are.

So it was in this head space that I had to get up and head to my cousin's baby shower the next day.  I've had enough practice by now that I felt I did okay keeping the lid on my dead baby crazies.  They were still there though, under the surface, which if anyone had looked close enough I'm sure they could see.  Baby showers are still not my thing. They are rendered bearable due to having Kaia and the cake that is inevitably served, but they still give me the willies. Not because I'm envious anymore. Not because I don't believe the baby deserves to be welcomed with style, because of course he or she does. Not even because I think the shower will 'jinx' the impending arrival. Babies arrive healthy, without incident every single day all around the world. 

But some don't.  

That fact alone is enough to spoil the festivities for me. Every family deserves that happy ending, and it makes me so sad that not everyone gets it.  Someone has to be on the losing end of statistics and sometimes it's you. Baby showers are just too shiny, happy, hopeful for me after reading about so many of us for whom the baby shower was one of the last happy occasions. Having seen behind the curtain, I just can't un-see it anymore.

Because for any baby to not come home is tragic.  But a rainbow baby?

There are just no words.

Friday, April 27, 2012

Working It Out

Okay this is still not my deep, thought provoking blog post, which is still on the back burner.  It needs more time to simmer and coalesce into something better than it is right now.  Unfortunately I have other pressing issues that are distressing enough to need blogging about.

Remember that awesome job I got the summer after Aidan died?  It was at the same hospital where I worked in the NICU, but the position was on a different unit. The new job compared to the NICU was WAY less stressful, WAY better hours, and allowed me to get out from under the dead baby cloud that constantly hovers over the NICU. There was NO way I was up for dealing with babies so soon after Aidan died, so getting this particular job was one of the biggest bonuses of my life. was a contract job...and it looks like the contract is up.  I haven't spoken directly to my manager yet to confirm anything, but the nurse who was hired for the other position under the same contract let me know yesterday that she was told the contract was up at the end of the summer.  Right around the time I planned to go back to work.  What this means is that I'll likely be offered my old job back in the NICU, since I was technically 'on loan' to the contract position.

It's a completely bummer.

I learned of this yesterday just as I was on my way out the door with Kaia to walk over to the bookstore.  My coworker texted me right after she found out. After reading it, I barely remember the walk to the bookstore or back, so many thoughts were flying through my brain.  I mean I knew upfront the job might not last forever. That's kind of the risk you take accepting a contract (heck it's kind of a risk you take accepting ANY job), and I hadn't planned to work on that unit forever. It's a bit too slow in terms of learning opportunities and since I still consider myself a long ways from being an expert nurse, I knew one day I'd be itching for a challenge.  I was hoping however, that I could at least get through the first year of being a working mom with a toddler before any major changes had to be made.

First of all the hours of the contract job were great. I worked 2pm - 10pm Monday to Thursday. No overnights. No holidays. No weekends. Another huge bonus was that although I was only working 80% of full time, the hospital still offers benefits and a pension. This is important because Brian's work offers neither and I'm the one who carries the benefits for our family. With that schedule, I would have only needed childcare 4 afternoons a week (from noon-ish until 5pm when Brian gets home) and although I wouldn't be there for bedtime 4 nights a week, at least I would get to spend all morning with Kaia and we could do things like go to the park or shop or just play together.  I wouldn't have to miss a single day of at least one solid block of time with her.  Not to mention that I'd be off Fridays, every weekend and every holiday. It was honestly a great job, with great side benefits.

Compare that to the NICU where I have to work 12 hour shifts, including days, nights, weekends and holidays. Our shifts run 7am to 7pm which means leaving home at 5:45am/pm and returning sometime around 8:15-8:30am/pm (depending on whether it was a day or night shift). This pretty much rules out spending any time with Kaia on work days, unless of course I work only nights and don't sleep during the day (which I know is pretty common with some nurses who have small children...but totally not an option for me. I get sick/anxious/depressed when I don't get enough sleep). It also means finding someone who would be willing to look after Kaia starting at 6am since Brian also starts work at 7am. Having two parents rushing out the door before you've even woken up seems a little cruel for a toddler. Plus, don't even get me started on how much I don't want to work holidays and weekends.

One benefit to shift work is that you DO get more days off work per week.  For example, if I worked 80% of full time doing 12 hour shifts (which is equal to the four 8 hour days per week I have at the contract job), I would only be working 16 shifts in 36 days or about 2 to 3 shifts a week.  However, when you work nights it basically takes up two days for every night worked, since you have to sleep before and after. Plus you end up feeling like garbage a lot of the time when you switch from nights back to days. I know people do it, of course. Lots and lots of nurses have small children and find a way juggle it all.  Some even really like the ability to have days off during the regular work week.  This means they are available to help out at their child's school or go on field trips or schedule doctor or dental appointments without having to take time off.  It also means they need less days of child care, which can be good financially. I might just have to wait and see if those pros outweigh the cons in my case. If not, it might mean I need to search for another job.

This is one of the things they never cover during 'Career Day' at school. The focus is always on 'what you want to be when you grow up' in terms of a job...but no one ever stops and tells kids "you might want to consider what you want your life to be like OUTSIDE of a job when you grow up". Your kid dreams of being a paleontologist? Better hope they like roughing it and living in remote areas away from family and friends, because dig sites are notoriously far from the suburbs. An artist?  Creativity is great...hope it also translates into creative marketing strategies or you might need to sell a kidney to pay the bills. A police officer? It isn't all guns and bad guys, it's a lot of paper work, interpersonal dynamics and rotating shifts. You want to be the boss? That's great if you like long hours for no overtime and don't let having to deal with other people's problems ruin your mood everyday. For me, working in the NICU was my dream nursing job. However, I might have tried to angle myself more towards an 8 hour daytime nursing job if I had stopped to consider what I wanted my life to look like outside of my career. Clinic nursing, public health, management or visiting nurse are all regular 8 hour days. It's not that I MIND working nights.  I actually quite like them, but not when they interfere with seeing my kid and my husband.

I know I have to work when my maternity benefits end. It is not financially possible for me to stay home. I even WANT to work, at least part of the time. I generally like my job (when it's not too overwhelming), and I like that it requires my brain as well as my people skills. I like my coworkers, both in the NICU and the contract job. I like the kids and babies I get to see every day. Heck, I sometimes even like their parents. I like that my job contributes to making people healthier and thus happier. I like the camaraderie of the work place. And of course, I especially like the paycheck and the material advantages that come with having a higher income. We are planning to do a few small home renovations over the next year or so, and those won't be possible if I'm not working. 

But...Kaia will only be a child once. She will also possibly be my ONLY living child as I may never get to have another. How much of her childhood do I want to spend away from her, looking after other people's kids?  Will it benefit Kaia to have me home more, or will she thrive in a different setting?  How much are we willing to sacrifice financially in order to have an ordered, settled home life?  Right now, it works out nicely that I take care of meals, some of the chores, and Kaia during the day and Brian works full time. Will the wheels start to fall off the bus if we're both working and someone else looks after Kaia?  I didn't have a baby to sit around all day...but I do enjoy 'me' time.  Will there be any of that left over after work, Kaia, Brian, and chores? Shift work is physically demanding...will I be able to cope with the amount, quality and timing of the sleep I'm going to get? Kaia deserves to have a mom who can be engaging and present when she's not at work...and I don't want to feel like a zombie. With me working, Brian will have to be more flexible with his schedule. Is that going to cause friction and stress?  Who will we get to look after Kaia?  Can that person be counted on and trusted with our daughter, our most important treasure of all?

I'm anxious about what's going to happen over the next few months.  I'm happy I'm off until early August as I'll get to have a bit of the summer I didn't get last year (hello summer sunshine...haven't really seen you since 2010!), but now that 'back to work' is really starting to become a reality, it's more daunting than I had realized.  I want to do what's best for me career wise and financially, but I also want to continue to be a good mom and wife.

Millions of people make it work. Just going to have to trust that we will sort it out too. Eventually.

What is your home life vs. working life like?  Do you stay at home? Work? Work from home? Is it working?  How did you arrive at that solution?

Sunday, April 22, 2012

Wins and Losses

I was working on a much more interesting, thoughtful, in depth post than this one. I was hoping to get it up in time for Aidan's Day, but my muse is off duty, and life got in the way, so I decided to write and post this instead.

I don't know if any of you out there are Survivor fans, but have you ever noticed that as soon as one of the castaways gets cocky, he or she gets voted out? The Survivor leaves the show all shocked and appalled that things didn't turn out the way they had intended. While I bet the show is edited to take advantage of this 'plot' twist, I'm sure there's also some truth to that series of events.

I've decided parenting is exactly like that.

Last week Kaia had finally decided that while she wasn't IN LOVE with her helmet, it wasn't the worst thing in the world, and she could live with it. We've got her wearing it 18 hours a day with a four hour off period in the morning and then a 2 hour off period before bed. Score # 1! Then last weekend, she slept for 11 hours straight TWO nights in a row! I was doing the happy dance thinking, "Holy smokes, I have the best kid in the world. My parenting skills must be da bomb!" Score # 2! Kaia has also taken to eating adult food with more gusto and less gagging and retching, no longer making a face that says"oh my GOD Mommy...are you seriously expecting that I swallow this?!" She's now fond of baby cereal, yogurt, mashed banana, mashed raspberries and black berries, baby mum-mums, and she even tried some spaghetti sauce the other night. This excites me because it hails the eventual end of pumping. Maybe I can even start to drop pumps to only 2 or 3 a day. Score # 3!

*Cue thunder and lightning*

Andddd....this week has sucked. Mostly on the sleep front. Kaia developed a *slight* (and I do mean SLIGHT) cold. I know it's not that bad because she's literally FINE during the day, happy and playful and full of energy as ever. I also have the same cold, and while I'm stuffy at night and had a bit of sore throat, it is in no way unbearable. I don't know whether it's this, the helmet, a growth spurt, gas from her new foods, or some crazy developmental stage, but it has caused Kaia to revert back to some of her earlier sleep behaviours that I had hoped were gone for good. Namely, waking up 20 minutes after falling asleep when first put to bed and crying, fussing and generally being crabby for well over two hours (or MORE!) until she finally falls asleep. I am okay with letting her fuss for awhile, but when it goes past 20 to 30 minutes and/or includes screaming, I'll admit this starts 'harshing my mellow'.

If that were the only sleep issue, I'd be frustrated, but we could work around it. However, she's also waking up WAY more often. Like NEWBORN often. Once this week she was up *SCREAMING* at 2am, 4am, 6am only to get up for good at 9:30am. The first time I heard her I jumped out of bed thinking something must be terribly wrong. She must be feverish, or her helmet must be causing her pain, or SOMETHING...but no, we tried Tylenol and leaving the helmet off and it doesn't make a difference. She's also always been a baby who goes right back to sleep after eating in the middle of the night. She was awake for over an hour at 4am one time this week, making it so that I had to lay on the couch listening to her on the baby monitor in order to ensure Brian didn't lose sleep for work. Afternoon naps have also left something to be desired. There have actually been a couple days this week where she hasn't really napped at all...virtually unheard of since last November.

Could food be throwing off her sleep? After a day or two of solids at both lunch and dinner time (literally two tablespoons a day instead of one), she became more gassy than usual, and fussy because of that. I think this is a hold over from her cast days and the majorly slowed digestion that caused, so I'm willing to bet this will pass...but when you can feel her tummy gurgling and she's crying and upset it's enough to make you want to swear off solids until she's 2. ALL RIGHT ALL RIGHT, I'll pump you some more breast milk. Sheesh! (A side note: I was totally right about delaying solids until the cast was off. Take that pediatricians!). I think we're going to cool it with multiple solids/multiple times per day and just stick to the cereal/breast milk once a day for awhile and see if that's causing the problem.

So, at the end of this week it feels like parenting fails all around.

As you can imagine, this week has been one of the tougher ones for us and for Kaia in awhile...and of course it had to be the week leading up to Aidan's 'dirthday'. I wanted his day to be special somehow, and I worried and fussed over what we should do. I felt I wasn't doing enough to plan or 'celebrate', because I was so freaking tired. I had a bit of a melt down Friday afternoon yelling at Brian that I was willing to quit the helmet and live with Kaia's oddly shaped head if it meant she'd SLEEP! (Because when in doubt, blaming the orthopaedic device seems like the safest bet). Then I cried a bit, felt better, and we got on with the weekend.

Aidan's day was actually pretty good (sleep woes, and the fact that it exists as a day to be remembered at all aside). Brian got up through the night with Kaia and let me sleep in (pure bliss). I made chocolate cupcakes on Friday night with blue butter cream frosting (picture on my last post). I was proud of myself and limited it to 9 cupcakes in total so we didn't go crazy with too many calories. I had originally wanted to do something nice as a family. Maybe go to a park where the cherry trees are blooming and take some photos, or go for a walk. I like being outside in natural surroundings as it seems the best place to be to remember Aidan. However the weather was uncooperative this year, grey and uncomfortably cool and windy. Not at all like the weather on the day he was actually born which was mild with some sun.

Instead we decided to take my parents up on their offer to babysit and Brian and I went to see the Disney nature film "Chimpanzee" (a sort of indoor compromise on my nature theme). I thought this was a fitting thing to do because it was a kid's movie, but with enough of an engaging story to make it worthwhile for adults. Definitely a movie I would have loved to take Aidan to, and Kaia will hopefully enjoy one day. Disney was also making a donation on behalf of every ticket sold the first week to the Jane Goodall Chimpanzee fund, so that was a nice bonus. Since we were at the mall seeing the movie, we also decided to do something I'd been thinking about for awhile. We went to a jeweller and asked them to inscribe both Aidan and Kaia's names on the inside of our wedding bands. It was only $40 for both rings, so I thought this was a pretty good deal and a nice physical representation to link our marriage to both our kids.

I'm happy with the way we spent Aidan's Day, and although this week with Kaia has been tough, Aidan 'dirthday' was a good reminder at how fortunate I am to have a living child to love on at all. Things are actually very good in my life and I'm so lucky to consider sleep woes the biggest drag on my mental fortitude right now. Plus this will pass. I'm sure in a few weeks, Kaia will grow and change things up on us again.

I wish I could say the same about Aidan.

Saturday, April 21, 2012

His Day

You are loved, my boy. You are remembered. Today and every day.

Monday, April 16, 2012

Burning Building

One of the more interesting things about being a nurse is the types of conversations you end up having with your co-workers. For whatever reason nurses seem to be able to discuss some of the most personal things with each other and yet still not consider themselves necessarily 'friends' outside of work. Perhaps it's the intimate nature of our jobs. Perhaps it's the long hours where we depend so much on each other to get things accomplished. Perhaps it's just the type of people that are drawn to nursing. Whatever it is, I've had some of the most interesting and intense conversations with my nursing coworkers.

The last little while I've been thinking of one such conversation that I had a few years ago in the NICU break room. Myself and a group of nurses I worked with, were sitting around watching the news on TV while we were having lunch. I think there must have been a story on about a house fire, because I clearly remember the start of the conversation was that one of the nurses I worked with said that the only thing that would make her go back into a burning building was to rescue her daughter, who was a toddler at this time.

Now I don't remember the responses to that statement or know how we got on to the second part of this conversation, but I remember this same nurse, a moment or two later, commenting that she might not have always done so. She said, "when my daughter was born, I loved her of course...but I didn't really LOVE her...ya know? Not the way I do now." This stuck with me because it rang true with something my mom told me years earlier about how when I was born, and later my brother, she remembered "falling" in love with us. This implies that at one point, she didn't love us as much as she did later on.

In the media, maternal love is portrayed as unchanging, enduring, self sacrificing, and beginning right from conception and continuing beyond death. This is probably one of the reasons people have such a problem with abortion, since it flies in the face of this commonly held belief. I thought it was quite gutsy for this woman I worked with, to admit to a group of coworkers that there was a time she wasn't sure she would have run into a burning building to save her daughter. What was more was that she felt this ambivalence not when her daughter was 2 and throwing a temper tantrum, or 6 months old and screaming through the night, but instead, when she was just a newborn and she felt she didn't really know her yet. My coworker had to FALL in love with her baby, and that took awhile.

On July 10th 2011, the day after Kaia was born, I remember thinking as they rolled me into the NICU how odd it was that I had to be TOLD which one of the isolettes held MY baby. I grew her, she lived inside me for months, and yet I realized in that moment that Brian could have rolled me up to any bed containing a white female infant of about the right gestational age and I would have accepted her as mine. How strange, I thought at the time, that I didn't just instinctively know her. Over the next few weeks and even months, I would come to agree with my colleague. I loved Kaia right away...but I'm not sure I could say I was IN LOVE with her for quite some time. This might have been due to the harrowing nature of my pregnancy and my reluctance to even consider I might have a live infant at the end, or the complications that Kaia experienced at birth and the separation that we endured due to her prematurity...but it did take some time to feel she was really MINE and that I would do anything to protect her.

I'm not sure when that love came about, but it did. I love her completely and totally now, but it took some time to develop. I can also say the love I have for her deepens over time, and comes from 'getting to know' Kaia. I know the way she smiles using her whole face, the way she loves to be held to fall asleep at night, how she gets totally jazzed when you make 'ch, ch, ch, ch, ch' noises and tickle her feet and how she will startle, sometimes to the point of crying, when someone in the other room sneezes. I know the way she likes to be held, the temperature she likes her milk, and have tried to capture as many of the funny faces she makes as I can with the camera, just so I can look at them again and again. All those things endear her to me and make her more enmeshed in our lives, to the point it's difficult to separate where care and concern for myself differ from care and concern for her, they are so entwined. I think about her most of my waking hours, and sometimes even when I'm sleeping.

But because I'm a dead baby mother, I often catch myself, usually when I'm holding Kaia before she goes to sleep at night, wondering how my love for her compares to my love for Aidan. Is my love for them equal? They are both my children, so how could I love one more than the other? Do I feel as strongly that Aidan is mine? I never got to know him in the way I know Kaia. He never got to do the things that would make him unique to me in all the world. I don't know what would have been his favourite position to sleep in, or which toy would make him smile even when he was cranky. I have no idea what would scare him, or how his laugh would sound or if he would have been a clingy, or active or a content baby.

Looking back I can say that I definitely went through a 'claiming' process with Aidan, but it was different than that of my 'claiming' of Kaia. This blog was a big part of that process. As was taking pictures of his name. So was thinking about him, how life 'would have been' had he lived. It occurred as I talked about him with friends and family, wrote about him online, thought about him during my day. I made him more and more mine as I designed and purchased a necklace to wear in honour of him. The way I continue to keep the shelf with his urn and his treasures in a specific order. These are the things I do for him, and they come naturally now, but they don't have the same 'return' value that makes loving Kaia easy . The things I did to 'claim' Kaia as mine were somehow so much simpler, I didn't even have to think about it. I just had to *do*: feed her, change her, play with her, respond to her cries. She wouldn't LET you forget about her or ignore her in any way. She had demands, whereas Aidan had none.

It makes me both happy and sad to see my love for Kaia grow over time. My love for her grows as she grows...which I'm sure would seem perfectly normal if I described it this way to the general population. Of course your love grows as your child ages...what could be more natural? It makes me fretful because of Aidan. He doesn't grow. He is frozen in April 2010 and won't ever get any older. I don't get any new memories of him, nor did I have very many to begin with. How will my love for him grow if he doesn't? Will it?

In one year, five years, 10 years, 50 will I be able to say I love them the same when I will have so many more memories of Kaia, and the ones of Aidan will have gone hazy and indistinct with age? I want to say I would run into a burning building for them both...but it's hard when the only one I would miss from my daily life is Kaia.

I miss you so much Aidan...but sometimes I wish I missed you more.

How have you worked out the concept of love and belonging between the living and the dead? Do you struggle with this too?

Sunday, April 8, 2012


I mentioned it was coming in this post, and now it's arrived. Kaia got a cranial molding helmet on March 31st. Due to her position in the womb Kaia has a bit of torticollis (ie: a stiff neck where she tends to look to her right rather that her left) and associated plagiocephaly (asymmetric head and facial features due to only laying on one side of her head). We decided to wait to start weaning her into the helmet until after the cast was gone since it was only a few days later. I mean who wants to be in TWO pieces of corrective gear at the same time that leaves only your shoulders, arms and face uncovered? Can you say hot and uncomfortable much? Last week I basically put her in the helmet in order to take a few pictures.

I call this series "Fun with Orthopedics".

Anyway, on Wednesday after the cast came off we started putting Kaia in her helmet.

She was okay for an hour or so...

...and then the tears started.

Like really started. Screaming, crying, tears rolling down the face.

So, like the directions say to do, we took the helmet off for a little while and then tried to reapply.

Once again, okay for an hour or so...and then nuclear meltdown! Tears, red face, wailing.

Took it off.

I thought it might take a few days for her to get use to it, generally getting easier each day...but so far each time we put it on, it's the same. She's irritable, but able to be distracted for 30 to 60 minutes and then breaks down into an all out cry fest. We are suppose to work towards getting Kaia wearing the helmet for 18 to 22 hours a day. At this point we can barely manage an hour at a time, and the one time she fell asleep in it, she woke 10 minutes later screaming. You'd think we were in the movie Misery with Kaia as James Caan and I'm Kathy Bates!

I'm not sure what to do. On one hand, I really want her to wear it. Her facial asymmetry is noticeable and is currently correctable due to the malleability of infant skulls. But, once kids hit a year old, the helmet no longer works as the skull becomes too hard. If we don't do it now, we won't be able to try again later. I don't want her, or us, to look back and think "damn, I wish we'd persisted with that helmet" because Kaia feels uncomfortable about the asymmetry of her face. Plus we went to the trouble to getting the helmet made, and it seems such a waste not to put all our effort in to making it work.

On the other hand, Kaia's head shape has improved since she was born even without the helmet and I don't know that it won't continue to improve over time all on its own. Evidence based medicine doesn't conclusively prove that cranial molding helmets are any better than repositioning and physiotherapy especially in mild cases.

The biggest thing is that I *HATE* seeing her so upset over something that we are CHOOSING to do to her. The Spica wasn't a choice. She needed to have to hip fixed. It wasn't optional. The helmet, on the other hand, is considered cosmetic (and costs $2000, thankfully our insurance paid for it). What if we keep trying and trying and trying and she still doesn't get use to it? Before getting the helmet, I checked out the babycenter board that deals with plagiocephaly and torticollis and everyone else's kid seemed to get use to the helmet within a day or two. I'm frankly shocked it upsets Kaia so much. I don't know if it's the tightness on her head, the heat of the helmet, the weight of it, the chin strap that holds it on, or just her rebelling against being put into a restrictive device (again!), but man is it awful to see your kid wail like that. Kaia is not a big crier normally and I feel a bit at a loss of what to do in this circumstance.

Do I pull on my big girl panties and just let her wail, in the same way parents sleep train their kids with the cry it out method (a method we have so far avoided might I add)? Will it even help? If I knew it would take one or two stints of just letting her cry it out, and then she would wear the helmet no problem, I would be willing to go along with it...but who knows if it will work? Do I wait for 10 minutes of crying? 20 minutes? An hour? 2 hours? Will it end eventually? Plus the problem with the helmet is that you can take it off. In fact you're suppose to, at least a few times a day to wash her hair, clean the helmet and readjust it. What if she screams like a banshee every time I go to reapply it? Unlike the Spica, which didn't come off, the very design of the helmet being removable almost seems to make it harder to "get use to". Kaia and I know it's "optional" and thus we know we don't have to tough it out. It's also sad to see how HAPPY she is when it comes off. The tears stop and she's all smiles again, and visibly more relaxed.

The other part of this is that I'm so SICK of making my kid miserable! While Kaia coped in the cast, it was restrictive and she frustrated more easily and whined more often. The cast also did not allow her to develop appropriately. It's become very obvious since the cast came off that Kaia is going to have a lot of catching up to do to get to where her peers are. She can't sit up. She can't crawl. She can't scoot. She can't roll from back to front (although she has managed front to back a few times). She can't weight bear on her legs, and the left leg (the bad hip side) is VERY weak, to the point of being almost immobile. She can't bring her legs together and they are in relatively the same position they've been in since January. This means we have to be careful the way we hold her in order not to cause her pain by applying pressure to the outsides of her legs. The surgeon said it might be 6 to 12 weeks (or more) before she is able to close her legs, which means pants are still currently out. It's understandable, but frustrating. She's behind due to her prematurity in that she is no where near able to do what a typical 9 month old can...and now she's way behind what she should be able to do for her corrected age. I know she'll get there eventually...but it's going to be a long road. Adding a helmet that she hates seems kind of cruel at this point.

I don't know. Honestly, I'm kind of stressed about the whole thing.

Anyway, I think I'll go have a white chocolate cupcake with strawberry frosting that I made for Easter dinner. At least I can always count on cupcakes to make me feel better.

Tuesday, April 3, 2012

Cast Off!!!

The cast came off today and it went surprisingly well. X-ray shows Kaia's femer head is in the position they want it, and now it's just going to take time for it to grow into a proper hip joint. We go back for a follow up in 3 months, and depending on how she's doing at that point, it won't be for another 6 months after that! Whoo hoo!

I was so proud of Kaia today. I had heard that some kids freak out when the cast is cut off, so I was expecting a major melt down. It's understandable I suppose. The saw is loud and it vibrates the cast. One woman on babycenter said her daughter still shows fear of the hospital one year after having to go and have her spica cut off. When the ortho tech fired up the saw I braced myself...and nothing. Kaia just looked at her like "huh? What are you doing?" She cried a bit near the end, but it was for all of about 10 seconds and then it was done. The ortho tech said she wished all kids were that agreeable, and she gave me props on how clean and smell free the cast was. I credit Brian's puppy piddle pad idea and my dedication to sponge baths.

Kaia is definitely stiff and sore, but only complains when she's in positions she is unfamiliar with. Lying down on her back, tummy time and being held upright are all fine. Sitting? Not so much. She hasn't bent at the waist in months so I'm willing to give that one to her. The other thing is that we've been told not to try to 'force' her legs together. Kaia still holds them apart in roughly the same position they were in the cast. We're not suppose to put pressure on the outside of her legs as this could compromise the development of her hip. The stiffness of the muscles will help hold the hip in position while it's still growing. Basically any apparatus that causes her legs to come together (I'm looking at you Bumbo chair), is a no no. I haven't tried pants yet, but I'm hoping I'll be able to get them on without too much difficulty.

In other news, if you're a repeat visitor here you'll notice I've made a few blog design changes. I'm not sure I'm totally satisfied yet, but it's coming along. If I was an HTML wizard I'd design one myself, but I'm not (at all) so this will have to do. I felt I needed to add Kaia's picture to the blog header. This space is about me and my life after Aidan, and Kaia's a huge part of that so she needed to be up there. Plus she's cute as hell, so who wouldn't want to look at her?

That's all for now. I just thought I should document this monumental change of events!