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.