Monday, February 25, 2013

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. 

Speaking of Samuel's badness... this is the abrupt end to this blog entry....



Wednesday, January 30, 2013

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." Uh-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. 

Sunday, January 27, 2013

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.