Thursday, November 24, 2011


Samuel cut his first tooth this week. Despite the fact that he is my fourth baby and I have been through lots and lots of new teeth, this is really special to me. I can't help but put my finger in there several times a day to feel the ridges of that little tooth poking through his bottom gum. It feels like the first really tangible marker of his normal baby-ness.

Samuel's "baby's first year" calendar has stickers for the normal baby milestones. First bath... he couldn't tolerate touch for the first few weeks and couldn't have a real bath for a couple of months because of all his lines. Had a haircut... he had several in the NICU when they shaved random patches on his head for scalp IVs. Slept through the night... an IV drip of Fentanyl and Medazalam will do that for a baby. Visited the doctor... well, that one just kind of makes me laugh.

Sam's milestones are different. He opened his eyes for the first time when he was seven days old. He came off the oscillating ventilator when he was ten days old. He battled his first bout of pneumonia when he was eighteen days old (and his second bout a month later). He had surgery to reposition his guts and build a diaphragm when he was twenty-five days old. He wore a sleeper for the first time when he was thirty-nine days old.  We first heard his cry and saw his whole mouth when he was extubated at sixty-three days old. He felt the outside air and moved from the PICU when he was ninety-one days old. He took food by mouth for the first time when he was ninety-four days old. He came home to us when he was one hundred and forty-eight days old.

There are no stickers for "breathed on his own" and "cuddled with mum" because those things are assumed to happen right off. There are no stickers for "got a life-threatening blood clot" and "came off Methadone" because those things aren't supposed to happen at all. Sam had a different story. We made it up as we went along.

I bought Sam his calendar on March 11, the day that Dr. Ross said to me, "now that we no longer think he is going to die...." It is the same "baby's first year" calendar that I had for the other boys but, until that day, I couldn't bring myself to buy one for Sam because I didn't think he would get a first year. The "first tooth" sticker is the first of the really normal baby milestones in his calendar. There are more to come as he crawls and walks and says ma-ma. But for now, I am loving that little tooth in there.

Wednesday, November 9, 2011


Last week our Samuel turned nine months old. This has always felt like a milestone with my babies - that point where they have been on the outside for as long as they were in. It was a bittersweet marker for Samuel, thinking of how his nine months have been, well, atypical. I don't feel like I have had nine months with him. But time is bit of an arbitrary system once you have children.

I read a beautiful article on another mama's blog today that brought home how parents are driven to make a future for our children but maybe we don't do well at really, truly loving in this blissful moment. I always appreciate the reminder to show up here and now. I think that's been one of Sam's gifts to me - simple things like playing peek-a-boo with Samuel and making lunches my kids really like take up more space they once did. Which is lovely. And I am pretty sure my kids won't miss getting on some magical success train because of it.

Okay, so here's a run-down on nine-month old Samuel:

He's recovered brilliantly from surgery. It was only a few days where his wounds were tender and he seemed out of sorts. His stomach had to stretch again after its time spent squished up through his diaphragm. He was eating smaller amounts more frequently (read: waking every two hours through the night like a newborn) and his weight gain slowed. But, even with his surgery and hospitalization, he gained weight respectably over the month and is now recovering more regular eating and sleeping patterns.

Here is Sam looking all peaceful and beautiful and innocent. One would not guess the torture he meted out on his old, tired parents through the night.
Samuel had his Audiology follow-up and we will go again in a few months. I was hopeful that he would get the "all-clear" on the hearing but we will continue to monitor developmentally just to see how he progresses. Good news is that his responses to the human voice sounds were perfect at all frequencies and volumes. This fits with the full-on interaction he has at home with his brothers and parents.

Daniel plays with Samuel and helps with his physiotherapy.
Here they are working on Sam's rolling skills.

Zachary reading bedtime stories to Samuel.
Diaphragmatic Hernia/Respiratory clinic included an "all-clear" from the dietician who follows his growth and the occupational therapist who follows his development and feeding. We also got the "all-clear" to take Samuel off of daytime oxygen. Just a little milestone there.

Yea, okay. That's a big milestone. :) No more dragging a portable oxygen tank with us everywhere (although we will keep one in the car always just in case) and no more having Sam attached to 50 feet of oxygen tubing as we move through our house. The tube will no longer catch on furniture and feet and will no longer knock over dominos tracks in the making. Woo hoo!!! He will be hooked up to his nasal prongs for sleeping, still at an 1/8 litre, which truly feels like no big deal. His pediatrician said yesterday that she thinks he is just going to sail very quickly from here.

Samuel trying on Daniel's new winter boots. Okay, so he's not THAT big.
Samuel has also finally taken to eating solids. We are going slowly and helping him to desensitize his gag reflex. But he gets it. Yay! I am back in the world of stained bibs and pureed pears mushed into corners of my kitchen and wardrobe. Yay again!

Sam is doing well with eating solid food, which does not normally include the wings of toy planes.

Sam was a pumpkin for Halloween. And also Superman. Yes, he demanded a wardrobe change mid-way through the evening. Such a diva.

Pumpkin, as called by Daddy.

Superman, aka Super Sam.

And just for good measure, a photo of scary big boys.

Oh and for all you helmet watchers out there, I continue to do battle with the hideous helmet. Man, I have issues. The most recent hospitalization didn't do great things for Sam's head shape progress. He spent more time laying on his back and dealing with the helmet was not on the post-surgery radar. We are back on track again now, hoping for a lovely rounded skull and a farewell party for that stinkin' helmet in the next couple of months.