Ten.

And now he is ten. And there are untold stories in his journey because who the heck has time. A few months after the "two" entry, his oldest brother was diagnosed with Type 1 Diabetes and our lives took another medical turn. And that settled down but four kids and two jobs and life is a lot. It didn't seem right to keep recording all of that here, in the space where Sam lived and grew.

Every birthday still feels reflective and emotional to me, but not in a bad way. This morning his brothers joked that when you go from single-digits to double-digits you go from being a baby to a young man. But then we decided he will keep being our baby. I am sure there is some psychological harm in that but we can't help it. 

Sam is amazing. He has had no more medical issues, surgeries or hospitalisations. He eats. He has two working lungs and a perfect heart. He is smart - mostly about the things that he really likes, such as species of animals that we've never heard of, every type and sub-type of Pokemon, and the date that each Super Mario game came out. He is hilarious. He talks a LOT and has a crazy good vocabulary (that may or may not include curse words). We all just try to keep up.  

Sam loves his people. He hates sleeping by himself. He loves jumping and ninja games. He hates anyone trying to tell him what to do. He loves camping. He hates being outside if it's too cold or too hot or too windy. He loves math. He hates school (which is why he is now homeschooled by his mum and Nana). He loves us. We love him back.

I am not going to pretend there hasn't been hard. There has been so much hard. Sam has a unique way of being. I want to help him be the very best version of himself, to bring his light to the world, to ease his challenges while not taking away the growing that emerges from them. I don't know how to get that right. I keep learning that I don't have to. He keeps teaching me. Plus, he makes me laugh every day and he is a top-notch snuggler.

Our boy who was supposed to live a few hours, or a few days, is a decade old. I am filled with gratitude. 

Sam's Journey

Sam was diagnosed with a Congenital Diaphragmatic Hernia (CDH) during an ultrasound at 13 weeks gestation. Sam’s diaphragm failed to form on the left side and his abdominal organs were growing in his chest, impairing lung and heart development.

Based on prenatal testing (level 3 ultrasound, echocardiogram, amniocentesis, and fetal MRI), it was determined that Samuel had a severe form of CDH. His chromosomes and other organs appeared to be normal but he had stomach, bowel, liver and spleen growing in his chest and nearly no visible lung development. It was predicted that he would die shortly after birth. We spent the remaining months of his pregnancy anticipating this outcome and praying that he would have peaceful journey for whatever time he was meant to be with us. 

Samuel was born via c-section on February 1, 2011. The neonatologist had discussed with us our wishes if he passed right away. But he heard Samuel’s strong heartbeat and declared, “we have life!” Samuel had enough lung tissue to be intubated and ventilated and went to the NICU. Our baby was being given a chance at life after all. 

Samuel was on multiple IV medications, nitric oxide, and an oscillating ventilator. He was too sick to handle any touch, light or noise. He was a week old when he first opened his eyes for a few moments and I excitedly told the neonatologist that he looked right at me. The doctor told me, "of course, mama, he is in there and he knows you." Sam was transferred to the PICU at Alberta Children’s Hospital when he was ten days old.

Samuel couldn’t have his diaphragm repaired until he was stable enough to survive the surgery. This day came when Samuel was 25 days old, when the doctors determined that he was not going to get any better and they had to try. In a 4 hour surgery, the surgeons moved his abdominal organs out of his chest and created an alloderm patch where his diaphragm would otherwise be. When the surgeon returned later that night, she told us that she pulled the bowel out of Sam’s chest and a healthy-looking, reasonably-sized left lung inflated. Our baby had grown two lungs.

Two weeks after surgery, when Samuel was five and a half weeks old, doctors told us they no longer believed he was going to die. Up to this point, Samuel had been too sick to handle any touch, noise, or stimulation. Now they let me sponge bath and cautiously dress him. Sitting perfectly still and with our ICU people managing his lines and breathing tube, Chris and I were finally able to hold our Sam. 

When he was seven weeks old, Samuel got a life-threatening femoral blood clot, blood sepsis, and pneumonia. Just as we'd let ourselves believe he was going to live, he was in danger again. Sam started on multiple antibiotics and a three month treatment of blood thinners.

When Sam was eight weeks old, the head of Acute Pain Services prescribed a drug cocktail to help Sam wean off of his other sedation drugs so that he could wake up and learn to breathe on his own. Sam went into baby rehab and came off of fentanyl, morphine, ketamine and medazalam by taking methadone and chlonidine. It worked! The whole rehab process took two months, but our boy started coming alive to us. Up until this point, it was assumed that he would need a tracheostomy to breathe.

When Sam was nine weeks old, he was extubated to BiPAP. We got to see his sweet face without tapes and tubes and we got to hear his tiny squeaky cry for the first time. We could hold him more easily now that he didn’t have a critical airway. He got lots of cuddles and massage and some beginning oral therapy from mama. His big brothers and his grandma got to hold him as well after many months of waiting.

At three months old, Samuel graduated from ICU and went to Unit 2. This was an amazing milestone for us - and yet a scary one as well since our life with Sam seemed so dependent on the ICU people who saved him and took care of us.

Sam still weighed 6 and a half pounds as he did the day he was born. He’d been kept alive with IV nutrition and expended a lot of energy to learn to breathe. A few days after getting to Unit, he took his first food by mouth. He had daily occupational therapy to help him learn to eat by mouth and musculoskeletal occupational therapy for hand contractures. Physiotherapy started to help him build strength and to address his head shape from months of laying on his back. Sam was tested for possible co-morbid GI and respiratory illnesses and saw specialists from Audiology and Ophthalmology.

As part of these tests, Sam was diagnosed with Ocular Albinism, a genetic condition causing limited pigment in his retina and optic nerve. The primary effect of this is difficulty processing light (photophobia) and a constant roving motion in his eyes (nystagmus). His visual impairment is not correctable and will continue to be a focus of his motor, speech, and social development.

Sam was discharged from hospital on July 1, 2011 at five months old and came home to be with his mum, dad and 3 brothers. He came home on oxygen support and a nasogastric (NG) feeding tube to augment his oral nutrition. He had only 3 remaining medications. He was followed by nine outpatient clinics at the Alberta Children’s Hospital, including a clinic specifically for children with Congenital Diaphragmatic Hernia.

Life after Hospital

At seven months old, Samuel’s pulmonary hypertension measured in the normal range and he was taken off the last of his cardiac medications. He was on a half-litre of oxygen, an acid blocker for mild reflux, and vitamin D. He was eating enough orally that we weaned him from NG tube top-ups.

At eight months old, Samuel’s diaphragm reherniated – his patch broke and his bowels moved up into his chest. He had GI symptoms (reflux, constipation, vomiting) but not respiratory distress. He had an eight hour surgery to repair his diaphragm using an alloderm and goretex patch. He was home a week later with the same oxygen support and feeding regime as he’d had prior to reherniation.

We began the process again of increasing oral feeds, weaning NG support and weaning oxygen support. At ten months old, Samuel was done with the NG top-ups and he came off of all oxygen support. By his first Christmas, our baby was officially tube-free and able to start a more developmentally “normal” path.

Samuel’s Big Repair

At eleven months old, we discovered that Samuel’s diaphragm reherniated again. Since he was strong enough to be off tube feeds and oxygen, and since his last patch had held for less than three months, we agreed to do a more invasive repair that would build Samuel a diaphragm using his left lattisimus dorsi muscle. This surgery required three surgeons and twelve hours of OR time so we waited a month with Samuel’s bowels in his chest before the repair was done.

Samuel’s lattisimus dorsi muscle was detached at one end, moved down through his rib cage (part of a rib was removed), and pulled across to attach to his existing right diaphragm. The phrenic (diaphragm) nerve was attached to his left lattisimus so that his brain can communicate and tell it to act as a diaphragm. As the lattisimus is his own muscle with its own blood supply, it should grow with him as a natural diaphragm would.

The recovery from this surgery was extremely difficult. For 72 hours post-op, Samuel’s heart, kidneys and lungs did not function no matter what interventions were used. He was being kept alive by machines yet again and we didn’t know if he would live. However, by eight days post-surgery, he was extubated and re-learning to breathe and eat. He spent three weeks in hospital and came home with a NG tube top-ups but no oxygen support.

By sixteen months old, Samuel had no further tube feeds. At twenty-one months old, Samuel had eye surgery to repair his quickly-worsening strabismus. The resultant improvement in his vision (especially his depth perception) created an amazing burst in eating and in gross motor, fine motor, and social development. The general anesthetic from this surgery was hard on his body and we ended up admitted, but it was a breeze compared to what Samuel had already been through.

Samuel at Two

At two years old, Sam’s medical appointments were transitioning from medical needs to a more developmental focus. Sam was delayed in gross motor, fine motor and speech development. In order to help him catch up, we arranged for him to receive early intervention (PUF) supports. He was eating anything that a normal toddler would eat, with some oral issues related to texture and some reflux. He was 10^th percentile for height and not on the charts for weight, a profile common in CDH babies who require extra energy output for respiration and digestion.

Samuel was sick almost constantly the winter of his second birthday, despite RSV shots, isolation at home, and constant handwashing. With sometimes only a couple of days between the waning of one virus and the start of another, Sam lagged further in growth and development. However, he was never hospitalized, never put back on oxygen, and had no further problems with pulmonary hypertension. By summer, he was doing all of the exploring and vacationing and annoying his big brothers than any 2 and a half year old should do. 

Samuel at Three

At three years old, Samuel has not had any additional reherniations of his diaphragm. He has no ongoing cardiopulmonary symptoms. His lungs look normal and full size on x-ray and his pulmonary hypertension remains resolved. The effects of his CDH show up mostly in gastrointestinal concerns such as constipation and reflux. He is at high risk of scoliosis because of his diaphragmatic hernia, missing rib, and relocated lattisimus muscle. However, so far he is holding strong. He will be followed by surgery, cardiology and ophthalmology for many years.

Starting when Sam was two and a half, we had occupational therapy, physiotherapy, speech therapy and a special education teacher working with him in-home. His walking, jumping, shoulder strength and balance all soared. His speech took off. He continues to advance and, now finally off of medical isolation restrictions, he's started preschool as well. 

Sam’s global hypotonia was initially thought to be caused by his difficult beginnings and three thoracotomy surgeries but is now thought to be related to an undiagnosed genetic syndrome. Whatever that syndrome is, it has not affected Sam’s ability to learn and love. He is smart and stubborn with a wonderful sense of humour. He adores his big brothers, music and playgrounds. He hates chest x-rays, needles, and having his ears touched.

As I write this now, Sam is three and a half years old. He goes to playschool twice a week and attends gymnastics and music class. He's making friends and trying to negotiate absolutely everything and learning not to throw his food. He comes to soccer games with his brothers and plays soccer himself every chance he gets.  

Our Samuel Meir is full of light and draws smiles where ever we go. His difficult journey has been full of learning, awe, fear, faith, magic, and gratitude for our whole family and his presence in the world is a blessing beyond what we could have ever imagined. 

Two.

Happy 2nd birthday to our Sammo! For his birthday, he got a fever and some projectile vomiting and an ear infection. Awesome. We did not have a party because I continue to pretend to protect him from other people's germs. At this point, it's really about protecting other people from us.

The pediatrician said that the good news is that he is handling all of these illnesses pretty well. Last winter, he was still on oxygen and learning to eat and he reherniated twice so these respiratory viruses would have had him hospitalized for sure. As silver linings go, it's a bit thin but I will take it. 

Today is February 25, one of Sam's other birthdays. Two years ago today, he was considered as stable as he was going to get for surgery. They wheeled our 6 and a half pound baby and his various life supports out of ICU to repair his diaphragm. Four hours later, our surgeon came to us and said that she'd pulled the intestines and stomach and liver and spleen out of Sam's chest and a healthy-looking lung inflated. She said that the lung on the affected side is usually a raisin but Sam had grown lungs, smooshed up there with all of his abdominal organs. She made a patch out of alloderm to fill in for where our Sam's left diaphragm didn't develop. 

Our baby who was not supposed to have enough lung tissue to survive had grown two lungs, one of them smallish but certainly so much more than anticipated. So today is the birthday of witnessing a real live miracle unfold before us. 

Sam has been healthy for a whole week now. (Yes, I am freaking out a little about actually typing that out.) We actually made it to his first music/speech therapy group after many cancellations and he was insanely happy there. He is ever closer to walking and talking. He wants to do everything himself and so we watch as he tries to spoon yogurt into his own mouth and puts his brother's boots on his own tiny feet. We have seen his appetite and his energy return. And his toddler badness. I have apologized to the trees for the ridiculous amount of toilet paper that has been unraveled and shredded at his hands. And I am bracing myself to face the furnace cleaner guys as they pull plastic toys, puzzle pieces, thousands of dollars in Monopoly money, and a few tampons out of our ducts.

But as toddler badness goes, we will take it. This boy is adored. Besides, I've already put up with a lot worse from him early on.  

Straight Eye for the Sam Guy

With my sad and whiny post out of the way, let me tell you about some of Sam's awesomeness. 

When I updated in November, Sam had just come home from having surgery. His eye surgeon said that the strabismus repair went smoothly but his eyes were totally freaking us out. They were blood-red and goopy and awful looking, yes, but we were also sure that they were now turning out instead of in. On day six post-op, I called our people at Vision Clinic and asked if they would take a look at him. The follow-up was booked for 3 weeks out and I could not wait that long to know that Sam's ghoulish-looking eyeballs were okay. 

The ophthalmologist measured Sam's eyes and declared, "his eyes are straight. They are both straight and they look great." Ah-maze-ing. Really. The whole thing. The ophthalmologist with his grown-up man-hands operates on my little baby's little eyes for 40 minutes, cutting the little muscles and putting in little stitches. And now Sam's eyes that turned inward are straight. 

We'd become so accustomed to his eyes pointing inwards that the straightness looked "wrong" to us for a little while. It's hard to explain to others that his eyes really looked normal to us. It reminds me of parents who have a child in a wheelchair and they say that they don't see the chair. We could see in pictures that his eyes where wonky. We could see in the expressions of others that they weren't sure where he was looking. But for us as his family, hanging out with him every day, he was our Sam and those were his eyes. 

Sam in the summer, right when his strabismus started progressing more quickly.

We began to notice a difference in Sam's vision that second week after surgery. He started grabbing food off of our plates at the dinner table. He started mimicking our actions and facial expressions even without us giving him voice clues. His big brother came home from school and took off his pants that were wet from sledding; Sam took off his pants too. He started going after things in his environment differently, exploring, taking things apart, reaching. The change was so dramatic that we concluded that Sam was seeing the world in a whole new way.

Vision is an awesome, awesome gift. There is nothing that can be done to correct Sam's underlying visual impairment and so his vision is far from perfect. But fixing the secondary problems does help to compensate for the effects of his ocular albinism. The strabismus repair means that his eyes can work together, that he has depth perception and doesn't have to work so hard to see. That has made a world of difference. 

The new level of exploration has created a whole lot of mess around here. Sam regularly takes all the tupperware out of the cupboard and throws it down the basement stairs. He climbs into the pantry and takes out all the boxes so I find crackers, corn starch and raisins all over the floor. He opens any drawer he can reach and moves the contents into other drawers. He found a roll of paper towel in a grocery bag I had yet to unpack and he unraveled the whole thing. He threw his bath toys in the toilet. He redistributed all the items from his brother's bedroom garbage so we found halloween candy wrappers under the sink and in our shoes. Sam was all about Christmas oranges and once got into a full box and took one bite out of each one. 

You may wonder where his adult supervisors were when all this was going on. Fair enough. I admit that sometimes I was online Christmas shopping or emailing clients. And I was not at home during the toys in toilet event. (Ahem.). But sometimes I knew he was doing it and I grabbed for my camera or gave him a spoon to stir his concoctions. Because these are the things that toddlers DO. Displays of normal toddler behaviour when your kiddo has had a whole lot of *not* normal are... MAGIC.

Here is photographic evidence of Toddler Misdemeanors and/or Parental Neglect. 

You go ahead and check Facebook, Mum. I'm good here. 

Sure I can "help" you make supper, Mum. I'll prepare the soup.

Need to shower, Mum? I'll just entertain myself quietly in brother's room.

Checking your email? I'll just be here in this drawer full of cleanly folded laundry.

Christmas shopping online? No problem. I will quietly clean up the kitchen. 

That last picture was a pretty great one for me. Sure, I saw that he'd taken a bite out of every single orange and smeared juice everywhere. And I saw that his eyes were still red and vaguely ghoulish. But more importantly, I actually SAW for the first time that Sam's eyes are straight. Very cool. 

Here's a final bit of awesomeness. Sam has had to be checked out a few times during his last couple of months of respiratory illnesses. This has resulted in me hearing repeatedly how strong Sam is to be kicking these viruses that are even taking down kids with healthy lungs. We have versions of this conversation: 

Doctor/nurse: He has good breath sounds.
Me: On both sides?
Doctor/nurse: Yes.
Me: Right to the bottom of his lungs on both sides?
Doctor/nurse: Yes.
Me: Like two lungs that both sound the same to you?
Doctor/nurse: Um, yes.
Me: Alrighty, then. Just checking. 

The emergency room people don't seem to get it no matter what kind of history I provide. They look at me like I am a little bonkers, which is kind of awesome in its own way. 

The medical peeps who have followed our Sam since early on, they get it. They know that they are not just hearing breath sounds; they are hearing a miracle. They know that 22.5% predicted fetal lung volume means that Sam should not be here at all, nevermind should he have good breath sounds on both sides, lungs that sound full and healthy, or the ability to kick butt on this season's nasty respiratory infections. And we share a moment, just a moment, to breathe in a WOW. 

Pure awesomeness. 

The Long Haul

It has been a long time since I've written. Partly, I have had really no time. As my CDH mama friend Miranda says, "this 4 boy thing is no joke." Partly, I lost some of my heart for delving into our CDH world. As I've talked about before, I've connected with the CDH world through blogs and facebook and have found pragmatic help, emotional support, and healing. But it is hard; these CDH kiddos who we love and cheer for sometimes soar, sometimes struggle, and sometimes die.

Our tight-knit Canadian CDH circle includes Erin and her mom Kelly. Sam and Erin were born a month apart and each had long courses in hospital. Kelly and I shared ideas about keeping oxygen tubes attached to their sweet cheeks and strategies to get them walking instead of bum scootching. Samuel and Erin both have adoring bigger siblings and dispositions that draw others to them. There was that line of connection to this family I never met but who understood things that our closest friends could not. Erin's sweet face was always a light in my facebook day, even when she was sick, in hospital again, struggling. 

Erin at 18 months. 

On November 1st, Erin's heart gave out, she was airlifted to B.C. Children's Hospital, and she died. Here's a little post about her from mutual CDH mama-friend Julie.

Losing Erin was beyond sad. I cried and cried. Watching her mum grieve her is heart-breaking. It put an extra layer of fear in me that I could lose our Sammo too, that it's not ever okay to exhale and consider this CDH demon done. It also put an extra layer of gratitude and awe for the blessing of Sam's journey. I think of Erin and Kelly every day, in honour of the light that Erin's short life brought to many and as a reminder of my own blessings.

I think of Erin, too, when things feel hard and I'm trying to remember how much harder it really could be. Sometimes this perspective works but usually it just leaves me feeling guilty that my gratitude for Sam can't erase my exhaustion and overwhelm. The last few months have been a bit rough... Sam's reflux and constipation, a prolific barfing illness, his surgery and recovery, and three hideous respiratory viruses in a row. Sam has been sick nearly non-stop for two months. Now, on day 12 of his encounter with the most recent plague and, after multiple consultations with his specialists and hospital trips, he is finally getting better.

It's never fun to have sick kids; the big boys have been ill through all of this too. But they clear these viruses in a fraction of the time it takes Sam. Their lungs are strong enough to cough effectively and they have the reserves to bounce back if they don't eat for a few days. And I don't worry that a bad cold is scarring in their lungs or over-stressing their hearts.

When Sam gets sick, Chris and I are reduced to a few hours of sleep a night, taking turns holding Sam upright so that he can cough. In between the rock and sway and worry regime, I lay next to him counting his respiration rate, trying to figure out if his breathing sounds laboured, if his fever is too high, if it's time to go to the hospital, if he's going to be okay. Then I get up and make lunches and organize soccer teams and fit in my professional self. I'm in charge of Sam's hospital appointments (there were seven in the two weeks before Christmas) and his fine motor, gross motor, speech, vision, and feeding therapies. All of these therapies go out the window when he is ill. Breathing and hydrating always take precedence over massaging finger contractures and practicing communication.

As well, there have been questions lately about whether Sam is just catching up developmentally or if he has an underlying condition. Perhaps he has a genetic syndrome or some deficits created by his life-saving therapies. Or perhaps this is just his normal trajectory as a toddler with 6 months in hospital (25% of his life), 3 highly invasive surgeries and a visual impairment. So begins a new series of appointments and tests and questions and fears.

Every time I thought about writing in the blog, it just sounded too whiny. And holy mackerel, I hate whiny. But there it is. This must be the "long haul" that the doctors kept referring to early on. Sam has had amazing milestones along the way and we have found our own version of normal. But there hasn't been a point where I've said, "Whew! Glad that's all over." And that is just how it goes. It is hard and we are tired. But I can do hard things. And in exchange, I have been given a most beautiful life. Everyone has their portion of "hard." I know very well that we have a much smaller portion of hard than most. And I have a much larger portion of beauty than I could have imagined.

Christmas magic... waiting for morning to come. 

Sam cuddling with Daddy to stay out of the mayhem.

Sam's 2nd Christmas. This year he did some present-tearing-open. 

Winter fun with a wee ice rink in our backyard.

I have come to understand the parents of medically fragile kids who say they would not change a minute of the journey. I used to think "really?! Not even those really horrific minutes of watching your child suffer?!" We don't get to give back the bad stuff and keep only the good. I might wish for some moments to give me greater comfort. But I would lose something in that and it would alter the next moment forever. I don't want to give back any of my moments with Sam. Ever. He is the gift that we didn't even know we needed.

God bless Erin for shining such love on the Earth in her 19 months of life. God bless her mama and all the mamas in my circle who show me what grace and vulnerability, strength and tenderness, there is in losing your child. God bless my boys, my five ginormous helpings of beauty. Sorry, whiny, but this is where the rubber meets the road. 

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."