Thursday, April 19, 2012

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.

Tuesday, April 10, 2012

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.

Which was, uh, very nice of them. Thanks.

Monday, April 2, 2012

Eat, Poop, Grow, Repeat

Sam is now 14 months old and he is doing well. Through much vigilance (read: obsessiveness and fretting), I have him consistently pooping well. I've never taken so much responsibility for someone else's bowel movements and I hope I never do again.

Sam is generally a great eater but it has been work to get enough into his wee body so that he can grow and build back his reserves. His formula is concentrated for more calories without extra volume. His food is fortified with flaxseed oil, hemp or chia seed for extra protein, calories and omega-3s. If he can't take enough on his own, the NG tube is used for topping him up. Every few days, the NG tube finds its way out through one circumstance or another so we give him a day or two "break" from it, then put it in again. Eventually, he will be strong enough not to need it  at all but that hasn't happened yet.

So happy to be NG tube free. And that Mom found me a comb. And that I am wearing cozy dinosaur jammies.

With NG tube. (I know. I know. He needs a haircut. This time last year, Sam was shaved bald except for a strip down the back of his head and an island on his fontanel. Several times a day people would comment on his bad NICU 'do. I'm having trouble letting go of what he's grown since then.)

Putting an NG tube in your own kid is not fun. It has been a point of mama-pride that I have been able to consistently do it, sometimes even without assistance. Sam has gotten stronger though, and now screams until I am about half-way down his esophagus and then gives a good hard cough and pops the tube up and out of his mouth. Clearly, a tube going in the nose and coming out the mouth is inefficient for feeds. And inconvenient generally. So we try again. Sometimes it ends with him having an NG tube and sometimes it ends with both of us crying. It's a crap-shoot.

Sam is growing. I take him to the hospital to be weighed weekly and our dietician is on the case. A "normal" baby should be gaining 5-10 grams a week at his age and, at last weigh, he is gaining about 25 grams a week. So that's awesome. He rocks.

What's more, he has gotten a hideous cold with a deep cough, just the kind of thing that we would expect to land him in the hospital. But he's been able to clear the cough on his own - or on his own PLUS the obviously helpful intervention of one of his parents diving at him to stare in expectant horror until he clears the cough. He chokes and gags and it's nasty. But he's managing it and now he seems to be getting better. Sam ONE. Hospital ZERO.

Sam also has more teeth coming through, which is just mean. I think babies in his position should have teeth appear fully and painlessly overnight. When it comes to giant incisors having to make their way sloooowly through tiny blistered-up gums, I think he should have a free pass. But no.

For a while after surgery, Samuel was "deeply committed to stillness and stability." (Thank you for that reframe, Amanda, so that I didn't have to worry so much that he just wasn't all that interested in moving.) Then one day, he just started rolling and sitting and reaching with renewed vigour. He likes being bounced and tossed around. A little too much, really, given that he just had a muscle relocated and guts repositioned and a rib removed. He's also becoming very talkative, which will be key in him finding a place in this family, and he responds to our requests for him to clap or blow kisses.

Boys loving up our wonderful friend, Marijan.

Last week was Spring Break here and all of my kids were home. I confess that I was a little afraid. At one point all the children were in the same room and I paused from wiping the kitchen table to do a head count. There are FOUR of them!!! Okay, I know many people have more than four kids but I am old and wimpy. So thank you, people out there who knew I had four boys, for not reminding me too often. I think not counting them is part of my coping.

It does remind me of this passage from my favourite blog,

"I have far too many children. Every time one of them says, "Mom," I bristle like it's an act of aggression. One or two will have to go. In an effort to avoid playing favourites, I will get rid of the next two who ask for water. I am done getting water. Forever."

Hee hee. Makes me laugh every time. Really. Super funny. I don't *actually* ever feel that way though. Much.

But really, my boys are awesome and I didn't need to be afraid of Spring Break. Chris even took off a couple of days of work to hang out with us. And I went for a massage and got my hair done. And then I worked my now-typical Saturday because I still have a professional brain in there. It turns out that I survived this whole thing. I am still me, even if I'm packing hospital pounds and my runner self feels like a foggy memory and I miss my awesome friends who I had to check out on and I'm not sure who this other grown-up is in the house but he's cute and I'll keep him.

My non-Mommy identity is a bit in tatters but she's there. And I thank her for taking a patient back seat while every last scrap of my Mommy self was in high gear. People would say to me "make sure you take care of yourself" and I would think, what does that even mean?! In those circumstances, taking care of my family IS taking care of myself. That's what it looks like.

I'm coming back. There really were times when I was so scared and depleted and forever changed that I truly didn't think I was ever coming back. But I am. I'm just different. For one thing, I know a lot more about poop now.