Surgery #4: Done and Dusted

Samuel had his surgery bright and early Wednesday morning. Since everyone in our house had been ill, there was a question mark over his head right up to the end. His doctors and I agreed that it would be bad for him to get ill during post-op recovery but that entertaining the "what ifs" wasn't worth it. Off Sam went.

I walked Samuel into the operating room, stroked his little arms, and sang to him until he was asleep. This made that moment of saying good-bye so much easier; instead of having him taken from me by strangers in surgical masks, I got to be the last person he heard and saw before he went under. An hour later, Sam's eye surgeon found us to say that the strabismus repair had gone beautifully. Another hour after that, Sam's general surgeon found us to say that the orchidopexy was smooth and successful also. Sam did so well that we thought he might come home the same day!

Of course, Sam had plans for a bit of drama centred around some angry breath-holding episodes and dropped oxygen saturations. This didn't freak me out at all but he did manage to send one nurse running in a panic (while I tended to him myself) and have another nurse ordering him "take a breath! take a breath!" every time he cried (because angry 21 month olds are notoriously compliant with such directives). It was an odd experience to be comforting his nurses and explaining what he does and how to deal with it.

Sam stayed on oxygen support to help him recover from the general anesthetic and so we were admitted for a sleepover. It took 9 hours for them to find us a bed in the hospital so that we could leave the Day Surgery unit. I was happy to get to our old unit where there were nurses who knew Sam and where I could take a shower. 

By today, Sam was feeling stronger, sitting up to play, and offering up grins. He came off of oxygen support, flirted with some nurses, ate some bad hospital food, and took a nap to prove that he could hold his oxygen saturations even when sleeping.

Now, we are home. His eyes are bloodshot where the muscles were cut and there are teeny blue knots where the stitches are. When he cries, blood oozes out the corners of his eyes, which is a little horror-movie-ish. However, I can already see his eyes straightening out and the nystagmus settling down. Very cool. Sam is bouncing back from all of that remarkably well. Better than his mother, actually, but I think we've come to expect that. ;)

Post-op snuggle with Daddy. 

Using his new eyes to watch a video on Mommy's laptop.
(The laptop is perched on Sam's medical file, which weighs nearly 20 pounds just like Sam!)

Cruising in his crib and ready to go home.

Twenty-one Months Old: Groovin'

Samuel is 21 months old (plus a couple of days that disappeared into a family barf-illness abyss). He is nearly 20 pounds. He has 10 teeth, including 2 rather brutal looking molars and more on the way. He has a crazy lot of hair that somehow retains the most unimaginably sweet smell no matter what the rest of him smells like. He eats anything and favourites include black beans, fish, carrots, cheese, and garlicky pasta. (See reference to his smell.) And he poops. 

Sammo likes to read books and play ball. He likes to kick the ball as much as throw it, courtesy of 3 older soccer-playing brothers. He is crawling some but still prefers bum-scootching. He pulls to stand on anything and will walk however he can. He's sooooo close to having enough strength and balance to stand and walk independently and we can see the determination and drive in his little face. Fortunately, there are a few people around here willing to offer up their hands to support Sam walking from place to place. 

Sam loves music and will rock out to anything. He shakes his head. He sways. He twists his tiny hands around in interpretive delight. He plays guitar with his daddy. He grooves. It is pure awesomeness. Sam also loves chasing down his brothers and trying to get in the mix of their flying bodies and hollering voices. It is alarming but he loves it.

In fact, I have come to realize that Sam likes to be scared. Nothing makes the boy laugh and sign "more! more!" like a good game of sneak-up-and-startle-you-and-toss-you-on-the-bed. He is a boy made for watching late-night horror flicks. It should not surprise me that Sam likes to be scared. That would kind of explain everything, wouldn't it?! Oh well. 

Here is our Sammo in photos. 

Hiding in the closet. Boo! 

Playing kitchen. 

Not so sure about his first time sitting in the snow.
(This photo is for my beautiful friend Tricia who lives in Texas and thinks pictures of my kids dressed up in the snow are *hilarious.* That's what we all think of snow here in Canada too. That it's hilarious. ;) )

Curly haired boy after a bath. Ha-HA! Take that, NICU haircut!

Sam has surgery on Wednesday if all the stars continue to align. It is considered elective surgery and therefore we could be bumped if there is an emergency. Sam has a conditional green light from cardiology because he screamed blue-bloody murder throughout the echocardiogram and they couldn't get a good result. They will repeat the echo right before surgery to make sure his heart is strong enough for anesthesia. There is panic embedded in that last sentence but I think we've all talked enough around here about my ability to freak out. 

And we've been sick at our house and surgery is off if Sam gets sick too. Sam seems to have been blissfully spared this nasty bug but, for now, I will continue wielding my bleach solution and making a crazy face. The bleach solution is surely more effective than the crazy face, but the face is kind of involuntary at this point. 

So far, it's all a "go" for this fourth and possibly final surgery. Let's git 'er done. 

Man of my dreams... Why, yes. Yes he is. Or at least, he's one of them... 

Pencil Rubbings

There is something about October that makes me keenly aware of life's brevity and tenuousness. Maybe it is  the shifting season here as the leaves fall and the snow comes. Maybe it is that my children are settled back at school and I start to miss them through the day. Maybe it is that I lost both of my beloved Grandmas in Octobers past. Maybe it is that October was the month of all the tests and meetings where the doctors all told us to expect our Samuel to die. 

Regardless, it seemed that what is in my heart these days had already written itself. So here is a repost from October 24, 2011. 


I caught myself doing it again - trying to memorize my children. I notice myself studying them, trying to imprint the feel and smell and sound of them into my own cells. With Daniel, it is the long, thin line of his back and the shape of his lips that is just like his daddy's. With Zachary, it is his hands, the out and in and then out again line of his beautiful fingers, and the way he rolls his eyes just like me. With Jacob, it is the way his eyes sit wide of his little freckled nose and the feel of his feet pushed into my back when he crawls into our bed at night. And with Sam, it is still all kinds of new baby things, but especially the squishy soft feel of his newly fattened thighs.

I know that some part of this memorization urge is based on a fear that they will disappear. And in some ways, they will, of course. They will grow up and be big, handsome, hairy men and that will be awesome. But they will not be children anymore and I want to still know this place where they are all soft and sweet and where they still let me cuddle up to their warm loveliness.

I dreamt of this on Friday night after bringing Samuel home from his week in the hospital. In the dream, I was tracing my fingers along Samuel's neck, sniffing that place behind his ears where bigger babies hide their newborn scent for a while longer. I remember doing this type of thing a lot in those first scary weeks where we still thought he might die, especially the day of his first surgery when I feared he wouldn't come back. I could have inhaled him that day, tucked him back inside me where he was safe, where it didn't matter that his lungs didn't work, where I could protect him.

We don't get to do that with our babies, keep them that safe. I knew that before Sam but standing by him while he went through so so so much made me know it more. And I knew before Sam that we couldn't keep them pressed to us, but living with the acute and real fear that he could vanish at any moment made me want to try.

Every so often that vulnerability surges again and I want to hold on extra tight. I take extra pictures and work extra hard to store their words and antics into my memory. But the sound and smell and feel of them isn't something I can keep to take out again another day; that sensory, bodily, momentary experience isn't like the accordion file full of school art projects and successful math tests. Trying to write those things into my neural pathways is just a silly mommy thing I do, and I do it a little more when we've had a scare of our own or when one of the other babies in our CDH community earns wings. 

It made me think of the pencil rubbings that my boys did a couple of weeks ago. They collected fallen leaves from our backyard, tucked them under paper and rubbed their pencil crayons over top to get an imprint of the leaf. They learned that you can't press too hard or you get only the colour of the pencil crayon and miss the veins and shapes and details of the leaf. Outside, the trees are getting bare and the air is getting cold and, soon, these pencil rubbings will be all we will have of leaves for a while. That's just how it is. I am reminded to drink in this fleeting moment with appreciation - not desperation. Pressing too hard doesn't make the leaf stay, it just means that the pencil rubbing I am left with will be missing the nuances.

Hooray for poop!

It's taken me a little while to update on how the latest ride on the worry train turned out. A few days after our ER visit, things were still the same. Sam would spend an hour and a half crying inconsolably and then would be fine and then would spike a low-grade fever and retch and then would be fine. On and on. It just wasn't ringing like a GI virus to me. 

When Sam's diaphragm reherniated in the past, he had similar GI symptoms and no respiratory symptoms. I didn't think he'd reherniated this time; that would just be super hard for him to do now that he has a lattisimus dorsi flap repair. But I wondered about other ways he could get a blocked or kinked bowel, possibly a malrotation or adhesion arising from his wonky anatomy and three abdominal surgeries.

I called our people at the CDH clinic and, after much talking and assessing and pondering, Sam went for a chest and abdominal xray. The xray showed that his lungs are awesome. Just awesome. It also showed that Sam had impacted stool in various parts of his colon, including pressing up against his diaphragm. Mystery solved. 

My first response was to feel really upset that I had let Sam's chronic, low-level constipation reach a point where he was in distress. My 'Failure-Mommy' monologue is always at the ready. I started reminding myself that we caught it early and it was fixable without surgery or invasive measures. This was what we were meant to attend to and it wasn't so bad. 

My momentary relief was interrupted by this giddy, adolescent self who started whispering jokes about how Sam was just "full of crap." This was entirely inappropriate, I know. I was listening and nodding while the lovely CDH doctors were talking about the treatment plan. Meanwhile, this immature self was imagining the doctors taking a family history where I had to list family members who were also full of crap and where I gave examples of their full of crapness.

At one point, I buried my face in Sam's neck to smooch him but I was really trying to smother an inappropriate giggle. Wow, will the bizarre coping strategies never end?! I am not sure that I have fallen into uncontrollable crap-related humour before. Oh wait. Yea, I probably have. 

So we are on a new plan and most days it is working and he poops and then eats like a lion. Other days are still rough but but my mama's intuition has settled right down, satisfied that this is what we were meant to attend to. 

This has all made me consider how valuable it is to have doctors who really get CDH. Sam has no oxygen and no g-tube so he looks like he's doing just fine and his long-standing impact from CDH is more digestive than respiratory. I think it is easy for non-CDH folks to see a pretty normal kid and miss the big picture. I am truly grateful for our hospital having a special CDH clinic of people who understand Sam - and who are willing to listen to his mama when she says something is not quite right. 

The worry train

The one thing that doesn't seem to change about this CDH business is my occasional need to ride the worry train. The rides are slower, less intense, and I disembark more frequently. But that constant question - "am I doing the right things for my kids?" - has a bit of a different flavour when it comes to Sam. I have started leaving him a few hours a week with a very capable caregiver and, in addition to the regular missing him stuff, I worry if he's being exposed to extra germs, if he's missing the time I would spend integrating physio and speech stuff. When he is well, I think about what else I could be doing to help along his development and put some meat on his bones. When he is sick, I wonder if it's a normal kid thing or a sign of something uniquely "Sam" that I need to attend to. 

Samuel has been "off" for more than a week now. He had a few low grade fevers in the night that were resolved by morning. He had a slightly crusty nose and was slightly clingy and his appetite was slightly erratic. And he suddenly started pooping like a normal baby which initially made me go WOOT! and then made me go Hmmm. After fighting with constipation his entire pooping life, sudden normal baby poop is just curious.

For the whole week he's been not quite sick and not quite well. I watched, googled "intermittent fevers" and was glad when the pediatrician at our regular appointment this week checked his ears and listened to his lungs. On Friday morning he took a downturn, intensifying all of the above and then tossing in a faster respiration rate. That breathing thing is the red flag. One of my other children breathes hard with a bit of a fever too. Is Samuel just like his brother or is there some kind of respiratory distress because his lungs are underdeveloped?

The first ER doctor we saw seemed to think that this was just a virus and we should go home. Maybe so but it made me want to emphasize that I am not a histrionic mum who brings her baby to the ER for a virus. In fact, the only times we've taken Sam to ER besides today was when he'd only been home two weeks and everything was terrifying and when he reherniated his diaphragm the first time. 

So I told the nurse that I know the difference between my anxiety and my intuition. Isn't that a good line? It's true, but not because I am soooo evolved and insightful. It's because my anxiety manifests as a crazy person who thinks that Samuel's intermittent fevers are because he has leukemia. Usually, I manage to be quiet about this anxious person and her ideas. But today while packing for the hospital I did call Heart-Sister and there might have been some flapping of hands and shrieking OH MY GOOOOOSH! WHAT IF HE HAS LEUKEEEEEEMIA?! She probably rolled her eyes at this. Really, who could blame her. But she responded kindly and with her special brand of bossiness. 

So everything this side of hand flapping and extended vowel sounds is potentially intuition. Sometimes it is incredibly clear, as when I knew that something was wrong as soon as I learned I was pregnant, when I knew that Samuel didn't need a tracheostomy, and when I knew that Samuel had reherniated the first time. Other times it is more amorphous but still feels like "somthing." This is hard to explain to some medical folks and others seem to really get it. 

So they checked his oxygen sats and listened to his lungs; always good to rule out respiratory distress and pneumonia first. They asked me lots of questions. I did note that his brother had evidence of a recently resolved ear infection. And I told them that Samuel had abdominal malrotations, that his organs are in unique positions and we are not really sure where his appendix is. They looked at his recent blood work and checked his ears again and again and tried to get a urine sample using a catheter.

Um, that last part was pretty awful. I have seen some invasive things done to our Sam but he's well enough now to be really mad about it. He was so mad about being restrained and poked in his penis that he actually used clear and appropriately placed words. I stroked his little head while he screamed hard enough to turn his face purple and he repeated NO NO NO NO NO NO! (gasp for air) NO NO NO NO NO NO! It was one of the least awesome moments of my whole life. AND they couldn't get any pee out of the deal. Cue dehydration worries. 

Shortly after that, while Sam's post-sob hiccups were winding down, he projectile vomited all. over. the. place. There were actually several good things about this. First, we were in the hospital where nurses come to help your vomit-covered self and they call "wet clean up in room 17" and this blessed person shows up with a mop. That does not happen when my kids barf at home.

Second, I got a pair of comfy blue hospital scrub pants out of the deal. I can't believe we have spent six months living in that hospital and these are my first scrubs! I am going to get "hospital mum" printed down one leg of my new leisure wear and have little baby hand prints put on each bum cheek. Take that, teenaged girlies in your faux-jock sweatpants. 

Finally, and most importantly, Samuel started to get better. A half hour later, he agreed to eat something. He had a sip of his bottle and half a pretzel. He drank half a little hospital cup of apple juice. Since he's never tasted juice before, this was quite an animated experience. Another hour after that, he popped up from his cuddle position on my shoulder and said, "Uhn-GO!" Okay, let's go.  

We are still not sure what all the drama was about and we are on a short leash in case we need to go back. Sometimes, he seems fine and he eats and plays giggly games. Other times, he seems unwell, spikes a little fever and breathes a little harder and throws up. He sleeps a lot and is fitful at night. But there is nothing specific to pin our hats on so I'm on a long, slow ride on the worry train, watching my baby and waiting for that intuition, that solid feeling in my belly, to tell me what's what. 

A bit of stuff, a bit of surgery

After returning from our (amazingly lovely) vacation, Samuel had a bunch of 18 month old follow-up appointments. Yes, 18 month old. He turned 18 months old. Wow.

We saw the dietician, the feeding OT, audiology, surgery, physiotherapy, the developmental OT, and ophthalmology. I learned a few things during these appointments. For instance, since Sam gained nearly a whole pound while on holidays, we are clearly meant to quit our jobs, move to Vancouver Island, and languish by the sea for the rest of our days. Clearly. 

I have also learned that butt scootching can be a highly effective means of transportation. Sam is walking assisted but, when he needs to motor independently, he can get around pretty much anywhere he needs to be using this backwards scoot method. When he needs to change direction, he pivots and goes. The only thing that foils his plan is if he backs himself into a corner where he can't pivot to get out. I respond to his calls of frustration immediately, of course. I do not pause to take a photo of his little stuck self. That would just be mean. Who would do that?! Sheesh.

"Dangit. I can't pivot. I can't back up. Somebody help me." 

You'll notice here toy basket carefully positioned on top of the furnace vent. That is because Sam's fave thing in the world is to lift the vent cover and throw all manner of things down the hole. This includes wooden blocks, plastic animals, thousands of dollars in Monopoly money, and my $200 running watch. Fortunately, the running watch was attached to the charger, which was attached by a long cord to the wall, so it was retrievable. And I have taken the hint that I'd better start running again if I want to keep my stuff.

The appointments are kind of exhausting as Sam is age-appropriately uncooperative. He doesn't want to cuddle with me on an exam table while grown-ups talk and he doesn't want to jump through people's hoops when he could be practice-walking up and down the halls. He fought HARD against the lovely audiologists putting little probe thingies in his ears to test his hearing. We gave up and they sent me home with some little ear probe thingies so that I could try to desensitize him for next time. As if. Sam will not wear a hat or sunglasses or let you help him with his spoon. There are precious few areas where he has some control and he has ideas about how these areas will go. After all the medical interventions he's had, if he wants to say "no thank you, you may not stick probe thingies in my ears" then I am loathe to force the issue.

As for the surgery part, Samuel is heading into the OR again on November 7. The ophthalmologist decided that this is the perfect time to fix his strabismus, which has been worsening steadily. The main issues associated with Samuel's ocular albinism are nystagmus (eyes roving back and forth), photophobia (difficulty processing light, which then obscures vision) and strabismus (eyes drifting inwards). Nystagmus and photophobia can be managed but not fixed; he will have some measure of those forever.

Strabismus, however, can be fixed with surgery to weaken the muscles that pull the eye inwards. The Eye Guy says that the outer eye muscles will then take over to pull the eye back outwards, and the brain will so appreciate the eyes facing forwards that it will lock them into place. The eyes start working together again and depth perception is restored. This is a 20-30 minute procedure and the ophthalmologist said this is a "meat and potatoes surgery" for him, which I am pretty sure means it's a simple thing that he does all the time, versus other possible quirky and/or frightening interpretations of "meat and potatoes surgery."  

All sounds pretty simple, right? No 12 hour life-threatening surgeries here. So I made my requisite all's-good jokes, asked my capable-mommy questions, and then I hightailed it out of Vision Clinic in the hopes that I could get to the parkade before the tears came. I don't really want my baby going back into surgery. It bites. But on top of that, eye surgery icks me out. It seems like you shouldn't mess with something that has its very own reflex to keep you from getting in there.

But this will help him to see better and it is part of him getting well. It will probably help him with skills like walking since he'll have the depth perception to determine what is a step and what is just a change in flooring. And it might even be the last surgery ever because, while Sam is in the OR for strabismus surgery, his Goddess-Surgeon is going to come in and fix his undescended testicle. And that is the last little Sam repair job left! How cool is it that these two surgeons are willing to work together (and that their booking people could figure out surgeon schedules and OR time) so that Sam only needs one anesthetic?! Very grateful. 

(Funny that eye surgery icks me out, but testicle surgery, not so much. Hmm. Feel free to ponder.)

So Samuel might just rock it, be extubated at the end of surgery, and come home that same day. But more likely, we will spend a night or so in hospital for respiratory monitoring. I don't know if this will be in ICU but I hope not. I love my ICU people more than I can ever say and am happy to visit, but our times spent there have been a lot about whether Sam is dying and I'm kind of done with that stuff, thank you very much. 

Yep. Done with the dying stuff. Gonna go feed my baby muffin and eggs now. I leave you with a few pictures of him from our vacation. 

Cruising around the coffee table on the deck. 

Sam, meet Pacific Ocean. Pacific Ocean, meet Sam. 

Sam scooting over to play with his favourite friend, creatively named "Pocket Door." 

A bit of normal

My little family of six is vacationing at the ocean. We drove for two days to get here, to be near the water, the rhythms of the tides as pulled by the moon, the salty air and slow pace. I have all the regular delight and gratitude at being able to have a holiday with my family.

I also have an extra dose of delight and gratitude for the "normal" that is represented by this trip. We have not had a family vacation the last two summers. Two years ago I was too sick with the early pregnancy to be any fun. Last year Sam was newly home from hospital, on oxygen and tube feeds and with a schedule full of appointments that kept us close to home. My boys have never complained about this, even once. They have been through a lot too and it was time for us to be able to get away, to recover a little from all that the last two years has brought us.

So here we are. We are hours and hours away from Samuel's hospital people. We did not bring oxygen or NG tubes or any medical equipment, just a couple of flats of his high-test formula. I did consult several of Samuel's folks before we left, making sure that he was okay to travel, that I remembered the protocols for managing his femoral blood clot, that I could look after his dietary and physiotherapy needs while we were away. I have a list of phone numbers and explanatory documents. The pediatrician printed off his growth charts for me in case we have to take him to hospital and they weigh him and freak out. I've counted his respiration rate much more often than I did at home. But otherwise, we are just doing this vacation thing. 

Boys with Buoys at low tide

Playing in the sand

Samuel is an awesome traveler. He complained very little during the long van ride and has slept well in his new digs. He has become extremely mobile during the past couple of days, to the point where we are saying, "has anyone seen Sam?!" and fanning out around our little house to see where he's hidden himself.

Just to be clear, it's not like we're ignoring Sam but he is quick with his new skills and he delights in tucking himself behind doors. He is creeping but not well and he is cruising but there is not enough furniture to get him everywhere he wants to be. So he uses a planful combination of rolling and bum scootching to get around. This is quite effective except for the fact that our skinny boy can't keep his pants up at the best of times so the backwards scootching motion does eventually relieve him of his trousers.

Heading for the exit (but will be pants-free by then).

Off to the beach now... 

One Year Ours

A year ago today, at exactly five months of age, Samuel was officially discharged from Alberta Children's Hospital. He came home. He became all ours after months of being part ours and part theirs. I was happy to share him with those lovely people at the hospital; they saved his life. But I was also happy to have him be all ours.

A couple of CDH babies in our midst have just come home - Clay and Jude - and Killian is [this] close. Going home after so many months is a breathtaking, amazing time. I remember feeling like it could not be real that we were walking out of the hospital with Sam and all his stuff. I had imagined that moment so many times. I had watched other families walking out of the hospital with their child and with bags and bags of things, stopping every few feet to take another photo of the route home. I had joked with nurses about making a run for it, how I would grab my baby and would need at least two of them to run down the hallway with us, pushing his IV pole and various other life-saving accessories.

Now he is home a whole year. Ours for a whole year. Seventeen months old. Eighteen pounds (if you hide a 3 ounce weight in his diaper). Since then, he learned to breathe on his own and to eat and to dance. He had two more surgeries. He grew 6 teeth and a head full of hair and he developed a giggle that rocks our world.

School's out and we're entering another summer with all four of our boys. Sam's rocky start has faded in ways I didn't think it ever could. He is ours.

Oh, and happy, happy Canada Day. Happy day.

Ode to Chris

So let's just pretend that I am not already 5 days past Father's Day, because I am so over apologizing for my tardiness. 

I don't talk much about Chris in the blog. I am aware of that and have thought about it a lot. I've asked him to write as well - I think it would be useful for people to hear a dad's perspective as most of these blogs are written by CDH mamas. But he hasn't wanted to do that and I have come to respect his privacy to the point where maybe the blog makes it seem like he doesn't matter in this whole thing.

So privacy be danged, this blog entry is all about Chris. Because you should know, if you don't already, how amazing he is. And that I couldn't have done any of this without him. And that, when it comes to being assigned a dad, there never were luckier children than our 4 boys.

When we were expecting Samuel and being told at every single appointment that he had a very slim chance of surviving, my husband remained steadfast in his hope. Specialist after specialist detailed the dire prognosis, gave us numbers and walked us through how our baby would die. And Chris would hear it, nod, look sombre, and then ask about how our baby would live. Honestly, sometimes I thought he must be daft. I would try to make sure he understood and a couple of times he broke down in fear and grief. Then, five minutes later... hopeful again.

One day, as we walked and I cried and anguished, Chris said to me, "I have had a really hard life. And now I have a really beautiful life. And I am not going to let anything happen to my family." And I knew that we would be okay, that my husband's unbreakable hope was his strength, was OUR strength. Whatever happened, we would be okay.

For the last year and a half since that day, Chris has quietly held us up. When I had severe polyhydramnios and a separated symphisis pubis and could hardly walk, he cooked and washed the floor and took the boys bowling while I laid in bed. When Samuel was born, Chris stood between me laying in one part of the room and Samuel laying in another. He kissed our Samuel for both of us before the entourage left for the NICU.

Chris with Samuel, a few minutes old.

During Samuel's months in hospital, Chris took care of our family at home so that I could be at the hospital as much as possible. He still made time to go there every day, to sing to Sam and read their favourite book so that our fourth baby would know his Daddy too. Then Chris went to his really demanding job and gave of his intelligence and commitment there so that we could still have food on our table. I became the master of medical language and managing Samuel's care but I couldn't have done that if Chris wasn't doing all that he did.

Together as we wait to send Samuel for surgery, 25 days old.

I got to hold Samuel once when he was 11 days old and then again when he was 39 days old. My whole body ached with knowing that I had just had a baby, was supposed to be holding and nursing a baby. Chris said that he wanted to hold Samuel but that I *needed* to hold Samuel. I was grateful that he understood that but I was equally grateful for the nurses and respiratory therapists who conspired one day to make sure Samuel finally got into his daddy's arms.

Samuel was two months old. I think that moment has gone down in ICU history because Chris was so effusively joyful, so awed by the experience of holding his fourth son, so overcome by his own love and pride and love.

Chris holding Samuel for the first time, 2 months old.

And that is my husband. Awed by the miracle of life. Overcome by joyfulness and love. Full of passion and reverence for each experience. Hopeful. Strong. Quick to celebrate others - including me - and wanting nothing except to be with his family.

Our three big boys have come through this ordeal and are not just okay, they are awesome. There were a lot of people involved in helping us but it really is their amazing dad who gave them stability and comfort every single day. Somehow, even though he was exhausted and emotionally drained too, and even though he worked all day, he found the energy to play soccer and have a never-ending Monopoly game and take them swimming and cuddle them to sleep.

And now Samuel has been home for nearly a year and I love watching him with his Daddy. Chris takes Samuel for little walks outside, cuddled in his arms, as he did with all the boys. He is never too tired to snuggle or feed him. Their special thing is when Chris plays his guitar and Samuel dances and plays along with him. It is seriously the sweetest thing ever.

Playing guitar with Sam, 16 months old.

Chris and I are finally out of this survival mode enough to glance up at one another in between things that need doing and little people that need parenting. When I look at my amazing husband now, I see... he is tired, battle-weary. He doesn't know this, but I pray for him. Not just because I could not do this life without him (although I couldn't!), but because I would never want to. He drives me crazy sometimes and I can be a crabby sort. So maybe he forgets that I adore him, that I deeply love and respect him, that I waited for him because he is exactly who I was meant to be with, and that I am grateful every day that my children got him for a father.

So, happy father's day. God bless my Chris. Amen.

Sixteen months old: A glutton and a drunkard

I am trying not to keep doing the "a year ago at this time..." thing. Really, live in the moment already. But sometimes it is useful. As I've worried at times about Samuel's eating and growing, I remember that this time last year he was just learning to eat, getting his wonked out insides to digest food and learning to take a bottle by mouth. We were excited if he drank a whole ounce at a time and were putting the rest through his NG tube. It reminds me to counter my "is he eating enough?!" worry with a bit of reverence for the fact that he eats at all.

The other thing that counters my worry is my husband's teasing. I am happy to have him take over feeding Samuel sometimes so that I can have a breather but then I inevitably hover around asking him to reassure me. "Did he eat well?" I ask. And Chris will say, "The boy is a pig. You should see what he ate. He's a glutton and a drunkard!"

Aside from the whole "deadly sins" implications, the idea of Sam as a glutton and a drunkard never fails to amuse me. I instantly have some kind of skid row image of my baby, all 17-some pounds of him propped against a dumpster waving his little bottle of milk and prune juice at passers-by. (Let's hope that's not foreshadowing of any sort.)

About a month ago, Sam's eating habits all shifted. He went from gluttonizing many tablespoons of Greek yogurt to pinching his mouth shut at the appearance of that little yum-and-fat-laden spoon. He shook his head no and used his hand to push our food offerings aside. He wanted only to feed himself. But here's the thing, Sam... cheerios and chunks of watermelon do not a growing baby make.

Sam even needs to feed himself his own bottle. Sigh.

I called Dietician in horror. What could be wrong?! Why wouldn't he eat?! He doesn't have the reserves for a hunger strike! What was I going to do?! "Corinne," lovely Dietician said in her calm, slow, way. "He's a toddler."

Um... what? Oh.

Yea, I guess he is a toddler now. He doesn't toddle yet so I kind of forgot that he's developmentally on track in other ways. A toddler. When did that happen?! I just got him!

This did give me a plan though. I have already done my time at Parents-of-Toddlers Training School. I recognize the itty-bitty bids for control and get creative. I spot calls to power struggle and expertly dance around them. Sam is no match for me. I diversified my food efforts, gave him lots of options to self-feed while still sneaking in the full-fat yogurt mixed with chia seeds.

A couple of weeks after that, Sam shifted again. He became a glutton and a drunkard to the tenth power. The list of foods that he was eating became too long for Dietician to write in her notebook. His fluid intake was just right. We officially called an end to the "NG top-ups as needed."

But he's still not really growing - at least not consistently enough to maintain his own little Sam-line at the bottom of the growth charts. So he is a glutton and a drunkard but I keep worrying anyway.

Bless his team of developmental gurus at the hospital who help give me ideas for our day-to-day and keep reminding me that I am doing a good job. I know that CDH babies use a lot of calories to breathe and so tend to struggle growing. And I am pleased that he's doing well enough that we can manage this without tube feeds now. But still my sense of failure surges when there's something I can't make just right for my kids.

Sam is fabulous otherwise. He is super happy, smiles big, giggles a lot, has various games that he plays with each of us. He started doing this thing where he would look at me and open his mouth. I thought, "He's hungry! My baby is so smart and he's come up with a signal for hungry!" After a couple of days, I realized that the open mouth wasn't linked to wanting to eat. So I thought, "He wants kisses! My baby is so sweet and he's come up with a signal for kisses!" But no. I conceded that he was opening his mouth because he was opening his mouth.

However, I noticed that I make this look of mock astonishment at him all the time and his open mouth was mimicking me. He was doing it to me independently, inviting me into our shared expression. I would do it back again and we would laugh. So not hungry or kisses but maybe "play with me, Mommy." And maybe also, "Can you even believe how astonishingly awesome I am?!"

The words are coming. His most unmistakable word is da-da. So we have this conversation:

Me: Say ma-ma?
Sam: Da-da! Da!
Me: MA-MA. (uses ridiculous amounts of enunciation.)
Sam: Da-da.
Me: Mmaaa-mmaaa.
Sam: Uhn-DAAAA! (yells)
Me: Look it, do you know what you've done to me?! I need to hear Ma-ma!
Sam: Mmmmmm... da-da-da-da-da-da. (whispers)

Okay, I don't really say that last part. Just a momentary channelling of ancestral mother guilting tactics. The thing is, Sam CAN say ma-ma. But he WON'T. And what does that tell you about the child?! Rotten.

Just GUESS what he is saying here. DA-DA-DA-DA.

His most rotten tendencies emerge at night, where he likes to wake up every two hours to be snuggled and rocked. And despite the fact that his parents are nearly dead with exhaustion, we oblige. We've read the books on attachment. And we've failed the sleep class at Parents-of-Toddlers Training School already. Three times now. So on we go.

But look at all this... eating, sleeping, talking... normal stuff. Can't complain about that.

I know. He is going to KILL me. But can you even stand that scrawny sweetness?!

We continue to work on core strength development. Sam can stand but not manage a hands and knees position because of his chest and shoulder strength. He could possibly walk before crawling - I know some typical babies do this. We're trying to keep crawling in the mix though as he needs those muscles.

Sam's vision is something that is on my radar all the time and I've gotten very used to managing light for him, finding the right distance for him, exagerrating movements up close so that he can learn things like how to wave bye-bye. I've also gotten used to interpreting his nystagmus for other people who meet him.

It makes me sad when people notice his eyes shifting and they looked puzzled or pull back from him. I get it, though, really get it. I thought of how I would like to be led to be with a child who responds atypically. I might feel uncertain too but deeply want to know how to connect. And so I tell people, "Sam has a hard time seeing and that's part of what his eyes do to focus. If you move in slowly, you'll find the spot where you know he sees you." I don't do this with everyone; really, strangers at the grocery store can think what they want because I just want my milk and toilet paper. But it's my job to help Sam's community know how to respond to his vision so that he feels supported and included and normal. I want to help him know - and help his brothers too - how to make this not a big deal. It's just Sam.

Given that it is just Sam, it actually really stung to get the letter approving Samuel for the disability tax credit. There it was in black-and-white, the government acknowledging our child as having a permanent visual impairment, as being "disabled." But as one of my friend's pointed out, we who know what Sam has been through know that he is "super-abled." They must just not have a tax credit for that.

Thanks for checking in on our Super-Sam. I've not much time for blogging lately because, in addition to my client work on Saturdays, I am teaching a spring course for the University. My time is pretty spoken for (as if it wasn't already before). But this blog is still important to me. Your presence and comments have been a lifeline for me. Thank you.

[Awesomely beautiful photos by Mike Drew.]

Happy Mother's Day

I had a great day with my boys today. Brunch. Homemade cards. Lots of love. And the present that I wanted - a baseball glove. Sounds odd, I know, but it was what I wanted as a symbol of being a mom to all boys. I haven't had a ball glove in years but it all came rushing back to me as I played catch out back gate in the sunshine. I want to make sure these boys know that their mom played ball, and can still play ball, and isn't going to just stay in the kitchen making cookies while they play hard with Daddy.

Daniel and Samuel came with me to the hospital this afternoon to drop off a little mother's day care for one of the ICU hero-moms. The memory of last mother's day -- of wanting nothing more than my family to all be together under one roof, of being super-ready to kick hospital life to the curb -- those memories were fresh as yesterday. But I got to walk out with my baby this time around.

Jacob and Samuel last Mother's Day.

Jacob and Samuel today.
(Don't worry that Samuel looks distressed. I think he's objecting to the plaid outfit.)

My four boys, wearing awesome (and deeply appropriate) Kaboom! Zap! Crash! Bam! tshirts from their NeeNee.

Hanging with my boys.

Happy Mother's Day. To my own fantastic and beautiful mom who I could not live without. To my aunties and cousins who I love. To my friends who walk this mama journey with me and teach me every day how to be better and stronger and smarter for my family. To all the warrior-love CDH mamas who deserve extra loving on this day.

And a Mother's Day thank you to the one big and four little men in my house who made me a mama. A blessed, happy mama.

Our CDH Family

There are a series of blog links at the side of Sam's blog, other CDH families whose stories I follow. I didn't read any blogs when I was pregnant with Sam or when he was in hospital. I probably missed out on some hope, information and support. But I also missed out on watching other babies die while I was in the midst of our own fear and anguish, and that was a really good choice for me at the time.

When Sam came home, I found myself really wanting to know about the journeys of other babies with Diaphragmatic Hernias. I have spent a lot of time - maybe too much time - reading about these babies, and then thinking, praying, cheering, hoping, and mourning. I have wondered about my urge to do this, to sit alongside the pain of these other families.

I think I get it. First, it gives me a chance to look into our own journey from the outside. I've needed to try to understand the happenings and the emotions that we went through; you can't process your experience when you are just trying to survive it. For many months after we came home from the hospital, I was wearing a deer in the headlights expression behind my "look at me holding it all together" smile. What the heck had just happened to my family?! As I let myself see our story through others' stories, I was able to make just a little more sense of things.

Second, following the stories of others let me feel connected and sometimes even just a little bit useful. In my real life, I have only two other families who know what a CDH journey looks like. The internet opened up a whole community of people who know. Those who went before us made me feel less alone. Those who came after us made me feel like I might have something to offer. What I had been through found a place in the words of care and hope that I could share.

One of the things that solidified for me in our journey with Samuel is this: if you are going to live with an open heart, you must also be willing to have an aching heart. I always want to live with an open heart. Today, my heart aches for the family of Esther, who fought CDH for 20 days and said goodbye yesterday. It aches for Abby and Leslie, awaiting their CDH babies and having just watched Esther, and Lucy before her, not make it. It aches for the families of Jude, Killian, and Clay, who seem to be riding on an extra long CDH rollercoaster. It aches for the mamas of Rowan and Maddie and Grace whose blogs I still follow because the CDH babies who don't live are just as loved as the ones who do. We are all part of the same family.

I don't know if others outside this CDH family can understand this connection, why I would cry for babies and families who I've never met. It is part of my knowing something different about the world because of our Sam. Life is brutal. And Life is beautiful. It is, as Glennon says, brutiful. I welcome the richness and gratitude that come of living deep in awareness of that brutifulness.

Mother's Day is coming, and I have been inspired by this blog to make a new tradition. I'm going to find me a mama who, for whatever reason, needs a little extra loving on. I have someone in mind, a mama who is still living in the ICU with her 6 month old baby and 4 other little kids at home. While I get to be home with my children this year, and celebrating my own awesome mom, loving on this ICU mama will be a way of honouring the big family of mamas who do hard and awesome and open-hearted things in this brutiful world.

A few firsts

So I did it. I took Sam for his first haircut. The lead-up was a bit bumpy. I had to cancel one appointment at the local Kid's Haircut Emporium because Sam was wailing and exhausted come time to leave the house. It wasn't going to be pretty. We made it there for our rescheduled appointment a few days later. However, it was INSANE in there and, as we walked in, a child was walking out with bubbles of yellow snot trailing down his chin. My germiness denial was shattered and I had to leave.

I called my own hairdresser and left a slightly tearful message and they agreed to do Sam's first haircut. They only made fun of me a little. Here are some pics.

Pre-haircut cuteness.

Mid-haircut cuteness. (He's totally not sure about this whole thing.)

Post-haircut cuteness. 
(The ouch on his face is courtesy of the tapes from his NG tube.) 

That same day, Samuel got to have his first "feed yourself spaghetti" fest. It actually could have been a lot messier. Sam seems to be a bit of a picky eater so letting him get to really *experience* his food is part of the program.

Mm-mmm good.

There was another first this morning that was not caught on tape. Sam rolled his eyes at me. I'm not making this up. I was doing some dorky pretending to eat his toes thing and he gave me this "oh you poor woman" half-smile. And then the eye roll. I am incredibly familiar with this expression so I was unphased. Indeed, it is good to see Samuel meeting these developmental milestones to keep up with his brothers.

Extra birthdays

I feel like Sam has more than one birthday. He has the day he came into the world - February 1. But then he also has the day he had his first diaphragm repair surgery - February 25. And the day that he left ICU - May 2. And the day he came home - June 28. I think other CDH mamas probably understand this.

Nestled in there is one of the most significant days to me, the day that Samuel was extubated. It was the day we first saw his whole face without the breathing tube and its accompanying tapes. It was the day that we first heard his cry. It was the day we finally could touch his mouth and work on him being able to eat orally. It was the day that he really started to just get *well.*

That was April 4, 2011. We'd been told over and over that extubation probably wouldn't work and that he would need a tracheotomy. The trach meeting had already taken place with all the doctors. I'd talked with other parents whose children had a trach. I knew it meant a big lifestyle change and not being able to hear our baby's voice until he was at least a year and a half old. I knew we'd make it work if that's what Samuel needed.

I went into Sam's extubation much as I went into Sam's birth -- clinging to prayerful optimism that he was stronger than the experts predicted -- filled with terrified anticipation that it would be awful.

I can tell you exactly where I was standing in the room and who was next to me and what the light was like and who our nurse was that day. It was our lovely respiratory therapist Angel who pulled that tube from our baby's throat. He was sixty-three days old. It was 3:20 p.m. - the exact same time of day that he was born. This time, it was Sam's breath and his voice that were born.

Now if you are rolling your eyes with my whole voice birthday thing, you won't be the first. But, well, I kind of like talking. Expressing yourself is, um, sort of important to me. (At least one of my parents just spewed their coffee on the computer screen.) And even though I knew that there were bigger fish to fry than whether my baby could make noise, his voice was one of the things I missed when he was extubated and loss of his voice was one of the things that I was grieving as we prepared that he might need a tracheotomy.

So extubation day was big. I stood back watching for that sweet tape-free face and listening for that first cry. He was wailing soundlessly - and then there was this ever-so-quiet mew of a cry, then nothing again, then a whisper, then a squeak. Our baby could cry, make noise, talk. It was awesomely, wordlessly beautiful.

Samuel before extubation.

Samuel a few minutes after extubation.
(His feeding tubes are taped to his forehead to keep them out of the way. Nice look, eh?!)

As I write this now, Sam is yammering away next to me, talking to an arsenal of little toys on his high chair tray. He has a lot of stories. He likes his voice, sometimes soft and sometimes loud. He doesn't cry a lot. But he can.

A couple of days after his extubation, it was clear that he didn't need a tracheotomy, that he was going to do this thing. Less than a month later, we left ICU with Sam on oxygen via regular nasal cannula. He came home on a whiff of oxygen but didn't need it anymore by Christmas. It has been among our greatest blessings. And so I mark the birthday of his breath and his voice.

Sam one year after extubation.

A few other updates on our Sam. Last week he had his audiology follow-up and I got to hear those magical words "He passed. His hearing is in the normal range for his age on all of our scales." I know that late-onset hearing impairment is still a risk factor for him and he'll be tested again every six months. But I wasn't about to let that get in the way of my delight. Sam passed his hearing test. Woohoo!

I also weighed him that day and he hadn't gained a thing. But I was okay with that because he'd been sick and teething and I know that making him gain weight is easier than making him hear. Did I mention Sam passed his hearing test?

Yesterday we had his two month post-surgery check with one of the plastic surgeons who did his lattisimus muscle flap diaphragm repair. Dr. H was pleased with Sam's awesome progress. He was possibly also pleased with himself, which I thought to be well-deserved and at least a little sweet. He told me that he pulls up Sam's chest x-rays every so often just to look at them, to see those beautiful full lungs and the curvature of his diaphragm. He also reminded me that Sam is only the second lattisimus muscle flap diaphragm repair they've done here. And that attaching the lattisimus to the frenic (diaphragm) nerve so that the brain can tell it what to do, that is brand new coolness.

I think I just looked at Dr. H with a dorky smile. What do you even say to that? Thanks. Thanks for making my baby a working diaphragm so that he can breathe and grow and keep his guts in his abdomen where they belong and be our normal little boy who we love. That was, uh, very nice of you. Thanks.

(Just as an aside, what kind of cool job is that?! Like imagine you're at a dinner party and people are all, "So, what do you do for a living?" and he gets to say, "Oh, I repurpose nerves and muscles to make body parts for small children. And you?" Heehee. I would so say that. At least once.)

Oh yea! While we were there, I weighed Sam again and he rocked the scales, even managed to eek his way past 17 pounds. Back on track. He's actually getting really strong, is suddenly sitting on his own and standing and taking little steps with just a bit of support around his waist. Those milestones are coming along. And he's {this} close to saying real words, which I love extra muchly because I know that it was a year ago now that those ICU people gave my baby back his voice.

And how do you even say thanks for that?! We kinda love those PICU Peeps.