Tuesday, January 31, 2012

Zero no more

In the past few months, my sweet five-year old Jacob and I have had the following conversation several times:

J: Is Sam zero?
Me: Zero what?
J: Zero years old.
Me: No, he's six months old.
J: So he's six?
Me: No, he's six *months*. It's like half of one.
J: So he's one?
Me: No, he's not one yet.
J: So he's zero?
Me: No, he's not exactly zero either. He's part of one year.
J: So he's one.
Me: When babies are small, we tell their age by months, by parts of a year. So he's not one whole year yet.
J: So he's zero.
Me (with sanity-preserving smile): Yes. Okay. He's zero.

Several. Times.

Tomorrow is our Samuel's birthday and he will be zero no more. I will probably spend much of the day processing that my littlest baby is a whole year old - not really a baby anymore {sniff sniff}. And I will likely also spend the day doing some "this time last year" kinds of thinking. In fact, my mind and heart will probably be full right up on remembering and reflecting and thanking thanking thanking. So I thought I would give a little update on Sam a day early.

Favourite toys: Daddy's head lamp. And anything that crinkles. So his birthday presents will include spendy developmental items like tissue paper and candy bar wrappers.

Favourite games: Peek-a-boo. Also, the "I know you've been asleep for exactly 14 seconds but I would like to eat some more right now please" game. That's a big hit, that one.

Oh, and I also like to "read." This is a particularly good book that Nana bought me for Christmas. Nom-nom-nom.

Favourite songs: "Sing a Song" sung by Mommy who does NOT have Karen Carpenter's angelic voice but Sam doesn't care. "Amazing Grace" sung by Daddy. Also, "who let the dogs out WOOF! WOOF! WOOF-WOOF!" sung by anyone.

Favourite words: "Uhn-da-da-da-da!" uttered with great expression. Okay, maybe that's not really a word. He is getting more communicative though. We've played "itsy-bitsy-spider" so many times that he will make a little spider with his fingers when I ask. We've worked on him opening his mouth wide for food and making him bite down rather than slurping off the spoon, so now when I say "do you want to EAT?" he opens his mouth wide. Ridiculously wide. Like he got lockjaw in the midst of a yawn. 

Favourite food: Greek yogurt (probiotic and 10% fat, woo hoo!) mixed with pears and prunes (poop, baby, poop!) and secretly drizzled with flaxseed oil (omega-3 fats, yay!).

Because my life with three big brothers isn't over-stimulating enough...

In other news, Samuel had an appointment with the ophthalmologist last week (henceforth referred to as Eye Guy because the spelling of ophthalmologist annoys me). Eye Guy said that Sam's visual acuity is currently estimated to be in the 20/60 or 20/80 range (with 20/20 being perfect acuity). However, there are other things affecting his ability to see, primarily the photophobia associated with ocular albinism. The way that I understand it, there is not enough pigment in the retina to support development of the fovea, which processes light. So bright light enters the eye and "fractures" into bits, obscuring whatever image he's taking in.

We are also now seeing the start of astigmatism and a bit of strabismus (eyes turning inward slightly). This is not unexpected but it still sucks to hear that Sam's vision is worsening. He will likely have glasses in the next few months to help with the astigmatism and may need eye surgery at some point to help with the strabismus. I continue to manage the light issues with a series of adorable brimmed hats and bossy "could we turn down these lights and shut off the flourescents?" tactics where ever I can.

Sam's eating is hard work at this point - for me, not for him. For nearly a month, his intake has stayed well below the minimum amount that he needs for hydration. I try to compensate for that with fluid-rich (and pro-pooping) foods. He's maintaining his weight and hydration and his sweet baby antics. He continues building strength - sitting independently, rolling everywhere and wiggling himself across the floor on his belly.

The surgery next week will take him back a huge chunk in his development of gross motor skills and I could feel really bummed about that if I let myself. And I could also be really scared about the whole thing if I let myself. But I don't because, really, what's the alternative? He can't plunge forward in life with a hole in his diaphragm.

We're in preparation mode for surgery now. Last week was a series of meetings and consent signings and tests - five hospital appointments across three days. The meeting with the anaesthesiologist was the one that really brought it all home for me. He was very honest: this is a complicated surgery and Sam will have a tougher recovery with more pain and potential difficulties than last time. The doctor was wonderful and welcomed my questions. I know I could have asked more and he could have told me additional things that would freak me out. Once upon a time, I was that mom who came in with a page full of questions to make myself feel like I have more control than I do. But I can't fix his diaphragm and it needs to be fixed. So I have to trust them. And I do. Because they're great doctors and they care a whole super-duper lot about my guy.

Remember all that surrender stuff I talked about? Yea, well, some more of that. And if it sounds like I'm just busy talking myself into platitudes that ease my fear and exhaustion, well... whatevah. Afterall, as Lesley says, I gotta keep my big girl pants on.

Our beautiful Sam, enjoying his last day of zero-ness.

Friday, January 27, 2012

A bit of news and a special meeting

Samuel is doing well. The two chest xrays looked a little different from one another and so we elected to do a CT scan to give us a proper image of the diaphragm. I think I was still holding out hope that we would see something positive here - a hole small enough for a laparascopic stitch or two, maybe no hole at all. But the CT scan showed a hole in the diaphragm similar to the one that was repaired in October, and a loop or two of bowel that had moved up into the chest. Surgery is a go for February 9th.

The good news from the CT is that Sam's left lung looked fabulous - no sign of collapse or compromised functioning. This is the Secret Lung, the one that Samuel wasn't supposed to grow, the one that he kept tucked away until its surprise inflation during repair surgery last February. That lung is now filling out its side of his wee chest and holding its own against a minor bowel invasion.

I am relaxing - at least as much as I can, given the circumstances - in the realization that my baby is okay. My association is that hole in the diaphragm equals life-threatening emergency. Dr. Brindle pointed out that, once these kids are strong enough to be off of oxygen, they can sometimes manage a reherniation for a quite a while before it is even recognized. We are guessing that Samuel showed up as struggling because he was so constipated and that put extra pressure on the diaphragm and bowel in the chest; this compromised his eating and comfort enough to set off my mama spidey senses.

So now it is all about keeping him hydrated, growing and, most importantly, pooping! I have been working hard at his pro-weight-gain, pro-pooping, pro-feeding-skills-development, anti-reflux eating regime. There was one day last week where I am pretty sure that every scrap of my cognitive abilities got directed towards making my baby poop. Success yielded a much, much happier Sam and we just keep working on keeping him that way.

Woo hoo!!!
Sam's dietician from Diaphragm Clinic has been an amazing source of good ideas and reassuring support in this regard. She invited us to stop by for a weight check and a chat. Turns out that our skinny little Sam is actually still gaining weight! It's very slow gain at this point but, given that the boy has his anatomy wonked out again, we're just happy that he's not losing.

The highlight of the CT scan day was running into some very special people in the hospital hallway. I got to visit with Sam's NICU nurses Barb and Jan and his neonatologist Dr. Carlos Fajardo. Aunty Barb was the person to first teach me about ICU humour (she's really good at it) and Jan actually remembered details of his transport day out of all the many babies she's helped. The last day they saw Samuel was when he transferred from the NICU to the Children's Hospital PICU at 10 days old. He was six pounds, intubated, just off of the oscillating ventilator, on nitric oxide and eleven different IV infusions. He was very fragile, being loaded into the transport incubator, and we were still so unsure that he would make it.

And now Dr. Carlos was standing here smiling at the rosy-cheeked, blond boy perched on my hip. Dr. Carlos is the doctor who came to Chris and I when I was in labour, explained what was expected to happen, asked us who we wanted in the delivery room if Samuel was to die right away. He is the doctor who took him from the obstetrician's hands, declared, "we have life" and started the actions to save our baby. I can hear those words, his gentle voice and Spanish accent, like it was yesterday. Before taking Samuel off to the NICU, Dr. Carlos told Chris to kiss his baby and took photos with our camera.

Daddy, meet Samuel.

That kind, gentle voice gave us all kinds of wise sound bytes that we clung to, such as, "He is the boss and he will tell us what he can do and what he needs help with," and "He is alive in there, mama. He knows who you are and he loves you," and "I don't care about those numbers now. We have been given your son. We listen to him."

Now that voice said, "Congratulations on your son. May I hold him?" Why, yes. Yes you may.


Dude! You are FUNNY! So, um, sorry I peed on you while you were intubating me and saving my life and all. We good?


Tuesday, January 17, 2012

Reherniation update

Yesterday was another long day at the hospital meeting with surgeons. I'd been told to call if I hadn't heard from our surgeon's office by noon. I called just before 9 a.m. I can see signs that Samuel is deteriorating. He is eating less and less. He has some early signs of dehydration, despite my efforts, and is still not really pooping. Sometimes he is very upset and I can see the bit of worker breathing at the top of his chest. My usually happy boy is fussy and wants to be held a lot.

Of course, he put on a big Mr. Happy Pants performance for his doctors yesterday. I'm sure this was partly because he had his very favourite thing to play with - the long sheet of paper that covers physician exam tables. But he also has periods of a few hours at a time where he eats more and seems a bit more well. We are wondering if the bowel is moving up and down into the chest and causing more or less distress depending where it is. We are at home now, trying to monitor Sam with my blend of mama intuition and in-the-trenches training about the respiratory and digestive workings of a CDH babe.

So what about my prediction that surgery would be early this week? Well, at this point, surgery is scheduled for February 9th. I am very sure that Samuel should not - cannot - be left to deteriorate for another three weeks. He will not have the strength to manage this kind of surgery if we wait that long and I know that his surgeon agrees. However, that is the soonest that they can secure ten hours of time in the operating room and make all three surgeons available for an 'elective' surgery. Samuel is not in enough distress (yet) to be bumped up; there are other children who are sicker and need to be taken care of first.

It is heartbreaking and frustrating to wait, hoping Samuel doesn't have to get a lot sicker before he gets the surgery he needs. The balance of patience and vigilance that I am seeking today is hard work. And yet, hanging out at the Children's Hospital always offers up a healthy dose of perspective. We waited for three hours for our surgeon yesterday because she had her hands wrapped around a huge cancerous tumour in someone else's child. I'm not about to get all foot-stompy and petulant about where we fall in that queue.

I am not going to let Sam fall through the cracks either. But I don't think I need to worry about that just yet. Dr. Brindle emailed us last night at 9:00 when she was done operating on that other child. She'd been reviewing Samuel's xrays and wanted to share her thoughts. She called me this morning to talk more about a plan, listing several other people she'd already consulted about the best route for Sam. We have great people on his team who care about him and trust our parenting. I must have faith that he will be looked after.

I have been sending up prayers for these other ill children and their families, who I do not know except for understanding that near suffocating vibration of fear they are probably living with. A couple of Samuel's CDH buddies - Killian and Jude - also need some extra love, prayers and juju sent their way. (Their blog links are in the CDH Friends list on the right side of Sam's blog.) Of course, I want my baby held in grace, light, love, compassion. But there is enough of that to go around.

Dear Father,
Hear and bless
Thy beasts and singing birds.
And guard with tenderness
Small things that have no words.
Amen.

Sunday, January 15, 2012

Reherniation Round Two

Sam's diaphragm patch has failed again. I am beyond disappointed. I expected that he would reherniate once. He was missing pretty much his whole left diaphragm and that first repair last February was really about seeing if he could survive. He did survive and he healed and came home. But we pretty much knew that such a large patch wouldn't be able to hold long enough for his left diaphragm to generate and take over.

So he had his repair in October and somehow, I convinced myself that was it. He got a fancy double patch in an eight-hour surgery and he bounced back quickly. In the three months since then, he started rolling and sitting and eating and he came off oxygen. I let myself believe our life was normal again. I tried to let go of my feeling of waiting for the other shoe to drop.

But there actually IS another shoe. As much as I want to make like that past year didn't happen and all is well now, my vigilance around Samuel is warranted and useful. Last week, I noticed he was a little fussier than usual. Then a lot fussier. He was eating less, acting hungry but then pulling off the bottle several times and taking half of what he usually would. He was constipated again. I noticed just a little bit of worker breathing at the base of his throat. His cheeks were red. So I was left to debate with myself... teething? the start of a cold? trouble digesting his solids? a hole in his diaphragm?

We always have to consider an abnormal cause for Sam's normal baby symptoms. As much as I wanted to believe that it was something innocuous, things felt "off" to me. I called Respiratory Clinic and we made a plan. Friday morning we headed in to Children's Hospital for a chest xray and then to see our Respirologist. Dr. Bjornson said that the xray looked "suspicious" and the Radiologist agreed and we set about waiting for Surgery to weigh in. She said there was something showing at the bottom of the left lung, maybe a bit of pneumonia if not a bit of bowel. Is it crazy to pray that your child has pneumonia? Heading home with some oral antibiotics sounded pretty awesome compared to another diaphragm surgery. 

Samuel busied himself in the exam room by pulling the paper from the exam table into a swarm around himself that he could rip, bunch up, and occasionally taste.
In the four hours that it took for Surgery to come see us, I convinced myself that Samuel had something normal they were missing. My top pick was an ear infection and Dr. Bjornson kindly checked his ears and throat for me. Because really, an ear infection would totally explain something suspicious on his chest xray. Sigh. Denial is a powerful thing.

By the time the Surgery resident arrived, I was exhausted and punchy. He explained that it was a certain reherniation of the diaphragm and told me the plan for Samuel to come in for surgery on Monday. I felt bratty about getting a resident when I wanted our amazing Dr. Mary Brindle - really just me clinging to my quickly evaporating denial. But then Dr. Sigalet arrived to give me the same story and it's tough to discredit a senior surgeon with his superdude reputation.

A friend of mine said it must have felt like someone sucked the air out of the room and, yea, that was exactly it. After a big boo-hoo, Sam and I headed home with a plan to help his constipation and keep him hydrated and strong over the weekend. He is eating pretty well and being his sweet self, although a lot more committed to cuddles. I have made a schedule for child care and am doing lots of laundry and some cooking today. On Monday, we will get a call with the specifics but surgery should be early this week and our hospital stay will be at least ten days.

Loving mama's bran muffins and some watermelon.
The surgery they are performing this time is called an autologous lattisimus dorsi muscle flap repair. They will take a muscle from his back and pull it around to make him a diaphragm. This is a more complicated procedure with a longer surgery and there will be more hands on deck. Plastic Surgery will be called in to help isolate the muscle and ensure that it is not devascularized during repositioning. The hope is that the lattisimus dorsi muscle will function as a diaphragm since it comes with its very own blood flow and nerve supply. Sam's own muscle should grow with him so that his chances of further reherniation will be much less than with a patch.

Dr. Sigalet commented that we are just starting to see babies like Samuel survive so the technology to help them thrive is still catching up. It reminded me of the miracle that is our Sam, that he has grown enough to reherniate twice when this time last year I was on bedrest and expecting him to die. That he is off oxygen and physically so much stronger bodes well for the surgery and recovery. I am pushing my fears to the bottom of the pile where they can't get in the way of what needs to be done to make my baby and my family well again.

Monday, January 9, 2012

ELEVEN MONTHS OLD!

Samuel turned 11 months old on New Year's Day. We welcomed in 2012 with good friends on New Year's Eve and continued our deep commitment to holiday laziness for our first day of the new year. I have got to say that 2010 and 2011 have been, well, more than a little bit rough. It feels like we are now on the brink of something a little more "normal" (whatever that means). And I have a few really important lessons under my belt to help me face whatever bumps in the road are coming our way. Most of all, I have gained a deep knowing that I can survive some pretty intense stuff and that my family can emerge strong and whole.

The big milestone was saying good-bye to Sam's home oxygen equipment. He had another oximetry on January 3 to double-check his overnight saturations. His mean saturation was 96 and he spent 98% of the night satting over 93. Sorry for those who don't know what all this means but my fellow CDH folks know... and it's good. Really, really good. Basically, Samuel's results are what any healthy person with normal lungs would be expected to do overnight. {insert moment of awed and grateful silence}

So I gathered up our various portable O2 tanks and our big emergency tank and the oxygen converter and some odds and ends. A really nice man from the respiratory home care company came and took it away. We haven't used the oxygen in a month but everyone was a little too suspicious to let it go. I did have a moment of thinking "what if he gets the flu *tomorrow*?!" but I know we will cross that bridge if/when we come to it.

Sam has taken off in the eating department. It's as though he just "got it" and now is eating pretty much anything. His almost non-existant reflux started to act up so I took the dairy out of his diet and it settled down again. I got a little carried away with all the good stuff I could use to fatten him up, but I have to remember that his GI system is still a bit more fragile than most.


I could have sworn that the jar said "turkey with vegetables" but this look clearly says "tequila with lime." Oh well, both options are equally festive.
Hey Mum. Betcha can't find where I be keeping my little green bowl of sweet potaters.

We are still quite home-bound as I try to honour Samuel's need for proper eating and sleeping time. Like any baby, he needs to eat and sleep to grow and get strong AND to not get sick; his needs in this regard are just bigger than other babies as he works to catch up developmentally. Plus, getting out of the house with 4 kids is just a lot of work. So I hope that our big boys didn't mind us having a pretty quiet Christmas. Wait, did I say "quiet?!" Wow. Okay, there is nothing quiet about our house. But it was a low-key holiday. The weather has been so mild that sledding and skating were out and trampolining was in. We even had a fire in the backyard one night and made smores.

The cold temps and fluffy snow of a few weeks ago are gone. We now have warm days (by "December in Canada" standards) as evidenced by the headless snowman and coatless children.

I did take the boys - all four of them, by myself, thank you very much - to the new Calgary Science Centre for an afternoon. The displays were awesome but there were these signs that I am pretty sure said things like, "rub your hand here to see a cool thermodynamic reaction!" but to me clearly read, "rub your hand here where 17 bazillion other people with plague-like symptoms also rubbed their hands after sneezing and picking their noses so that there is no way in heck you're getting out of here without some hideous illness!" So I got to be that really cool mom saying things like, "Yes, isn't that neat?! Just be sure you don't touch your face until I can find my sanitizer gel!" I'm pretty sure it would not scar them socially if I made them wear haz-mat suits next time.

Tonight I said good-bye to my parents as they are heading off to Arizona for three months. I might have cried a little. But I didn't throw myself on the ground and grab their ankles and have a tantrum and beg them not to go. And I didn't even pay one of my kids ten bucks to enact this scene on my behalf. So that's good, right?! We'll be okay.

Tomorrow, my big boys go back to school. Even though they are loud and chaotic and they fight and scream and wake up the baby and distract him when he's eating and drive me mental, they also play and cuddle and say sweet things and make me laugh so so so much. And they do actually play really well with Samuel and have enough empathy to respond when I remind them that they are each three times his size and like mini-tornadoes. So I will miss them during the day.


Daniel engineers a new play system for Samuel.

I will also miss their dad, who has been good to have around because it means I am not so outnumbered by the little people. Heh heh. Not very romantic, eh?! Okay, he's been good to have around because he loves us all really well and is a fabulous cook and is my partner and my prince charming. I might adore him a little. But don't tell him I said so because it will discredit me when I need to complain about the scuzzy dishrag balled up in the sink. Shhh.

Cute much?
Even cuter much?!

Sunday, January 1, 2012

Samuel's First Christmas

It was a blessed Christmas with my four (five if you count Chris!) boys. I'll let the photos do the talking this time.


Our tree.

Stockings are hung... and Scrooge is on the tellie.


Cookies (thanks to baking from Denise and Aunty Maria) for Santa.


Daniel.

Zachary.

Jacob with Samuel.

Chris shares his genuine Australian footie - a piece of his childhood - with his youngest boy.

Merry Christmas from Samuel.