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, we top him up via NG tube. 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, momastery.com.

"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.

Love Givers

One of my biggest learnings in the last year and a half has been how to let people help me. I'm not good at accepting help. (To those who know me well, thank you for not publicly snorting at my understatement.) I'm much better at giving it. That's what I do. But then life circumstances kind of came and kicked the carp out of me and I had to accept help. I couldn't NOT accept help.

That didn't make it easy to receive, though. Every time someone did something nice for us, I cried. It was awkward for me and yet deeply, deeply moving. Also, I think, it was healing for me. Thanks to repeated teachings from the Love Givers inspired by Sam, I've gotten a little more graceful about receiving help. And the magic of every gesture is still there for me.

Help often came from unexpected places. Parents at school, colleagues from work. Crazy things happened like my friend Lisa offered to spend two days repainting our family room because we just never had time. And I LET her do that. People who I didn't even know were praying. Praying! Women at heart-sister Lori's church would press cash into her hand for our stroller or give her a bag with food and a homemade blanket. I'm familiar with Love and consider myself pretty connected to it. In my life before Sam, I had never contemplated that this kind of Love was just walking around out there ready for MY family.

I want to tell you about some special Love Givers in my circle. You know how there are some people in your life who you don't really know but you actually really do? You haven't had a lot of time together and you don't know all the details of each others lives, but you somehow just *know* them in a beautiful spirit kind of way. Carissa and Lesley are those kinds of people for me.

Carissa and Lesley know about hanging out in the hospital with your baby. They have both done their time with fear and prayer and hospital-world-depletion. They have both walked out with grace and wisdom and gratitude. And then they turned all that into a desire to love on other people. They are like that.

In a whole bunch of little ways, they have woven themselves into Samuel's loving quilt. There was an ICU Survival Kit that showed up one dark and scary night early on. It had things like tea, a coffee card, and hand cream. There were books with short, simple stories for mommies with no access to even their most frazzled brains. There were prayer beads that I have worn every single day in the hospital, handmade by Lesley using special magic beads to remind me that God is listening.

An envelope of cash arrived another night, tucked in with a bottle of wine. Carissa collected money from people who don't even know us but who wanted to help. It was the exact amount needed to pay for our monthly hospital parking pass. These were the tangible gifts but there were other important gifts. Through their messages in email and on the blog, they let me know that I was not alone, that there were these other women out there who walked where I walked, women who had come out the other side with their families and their selves in tact.

When Samuel was hospitalized for his surgery in February, Carissa decided that she would love on the big brothers. She called upon her team and a package was delivered to our house for Valentine's Day. I came home from the hospital that evening to find my boys on the floor surrounded by books, gift cards, candy, baking, DVDs, games and toys. Just for them. Amazing. Then cookies and loaves appeared on our doorstep too. Thank you Kim, Jamie, Susan, Carmen, Christine and Ryan who I don't know and love. Thank you Jana-Lynn and Lesley who I know and love.

Extra super-duper special to me were the cards acknowledging and encouraging Daniel, Zachary and Jacob and the prayer beads that Carissa made for each of them to honour their amazing big brother journey. They have beads just like mama. To remind them that God is listening.

Also, there were two candy bouquets from - get this - some of Carissa's students. They suggested we could share one of the baskets with a special hospital person and we did just that, giving it to the family across the hall from Samuel in the ICU. So the Love passed on to the 4 siblings of Sawyer, who has spent his whole 3 months of life in ICU. Thank you Emma, Victoria and Megan for being kids willing to care so much about other kids.

On one of my walks with Zachary recently, he said to me, "You know, Mum, there are a lot of disadvantages to you being at the hospital all the time, but one of the big advantages is that people sent us candy and stuff!" Spoken like a 7 year old.  

Thank you Carissa for being one of the most open-hearted, faith-filled people I know. You've taught me more than you know and I will have you in my heart every time I get to pay forward such Love. Thank you Lesley for the way that you give of yourself and for the way that your humour and words can lift me right up. (Special thanks for giving me the phrase "big girl pants" which is such a smiley way to remind myself that I can do hard things.) I hope to be more like you both, walking this world with your kind of grace and wisdom and gratitude.

To Carissa and Lesley and a whole whack of other people reading this who I know and who I don't and who I love.... Thank you for bringing Sam into your great big hearts and for sharing him with your own teams of Love Givers. As it turns out, being able to receive AND give Love has just turned me into a New and Improved Love Giver! Which is just a cool thing to have figured out in all of this.

Goodbye, other shoe

Four weeks ago today, Sam had a 12-hour surgery to reconstruct his diapragm using the lattisimus dorsi muscle in his back. This is him today:

Okay, seriously. Brown cords. Sweater vest! Tube in nose!! Lego-Guy comb-over hair!!!
WILL THE DEGRADATION NEVER END?!

And we've added a dorky hat. Hilarious, mum. Really funny. 

We had follow-up appointments up the ying-yang on Tuesday. The highlight was a conversation with our surgeon, Dr. Mary Brindle. It went sort of like this:

Me: So for a year and a half now, I have been waiting for the other shoe to drop. And now I have this amazing sense of relief, but I want to make sure it's actually grounded in reality. I need to know what the other shoe might be now.

Dr. Mary: There is no other shoe.

Me: So he is like really, really likely to reherniate now, right?

Dr. Mary: He's really UNlikely to reherniate. Really, really UN. LIKELY.

Me: What did I say?

Dr. Mary: You said "likely."

Me: Wow. Paging Dr. Freud. So really UNlikely to reherniate. That's it. He has a diaphragm. He has two lungs. He just needs to recover now.

Dr. Mary: Yes. And he will.

So, um, that was pretty great. Then we discussed the risk of bowel obstruction, which happens with some CDH babies when their body tries to digest the synthetic diaphragm patch. But Sam has muscle -- his own growing, moving muscle -- between his bowels and any patch material. So that's not likely to happen either. And then we discussed the risk of scoliosis, which sometimes happens with these babies because the two sides of their chests don't always grow evenly. We just have to take a wait and see approach on that one.

Then we went downstairs for Sam to have a chest x-ray. This gives us a post-recovery marker of what his anatomy looks like and just makes sure everything is okay in there. On the way back upstairs to clinic, I stopped to fill my water bottle. Somehow, that was enough time for Dr. Mary to have reviewed the chest x-ray and we returned to Sam's exam room to find a note written in pink highlighter. It said:

CXR looks awesome!!! Mary.

I kept the note.

So the only even sort of kind of bad news of the day is something we expected. Our Sam is one skinny baby. He lost nearly a pound. And when you haven't even eeked out a whole 17 pounds in your life, that's a lot. Two months ago, before we found the reherniation, Sam was hanging off the bottom of the growth chart by his fingertips. Now that growth chart is a scribble in the distance. So we will continue NG tube top-ups for a while until he is strong enough to take all the necessary calories on his own.

Unfortunately, the (many) things I know about putting on weight do not apply here. From what I can gather, I should not feed my baby potato chips and ice cream and burgers. Go figure. Sam just had a major trauma to his chest and back, to his heart and lungs (especially since he also got pneumonia in ICU). Even respiration uses extra energy for him. We need to try to get lots of quality calories into his tiny belly so that he can grow and heal. Luckily, I have some mama tricks and a fabulous hospital dietician up my sleeve. (Heehee. Enjoying the image of Candace tucked into my sweater sleeve, so I'm not going to adjust that sentence.) 

Next up is physiotherapy and occupational therapy to help Samuel catch up on his gross motor and fine motor skills. Oh, and getting me and my little family of six all whole and healthy and normal again. Because I surely have the grace and wisdom to know that we are never guaranteed another breath, but I don't like living with real threat hanging over my family either.

You know that cliche that says, "live each day like it's your last" - ? Well, I don't recommend that, actually, unless you're super evolved and can be all joyful and connected and peaceful while really *knowing* that the other shoe is gonna drop shortly after nightfall.

Goodbye, other shoe.

Just one more photo.... before I topple over....