Two weeks post-op: whine alert

So here is a confession about me. I am secretly a ridiculous optimist. On the outside, I say things like, "this is a really difficult, painful surgery and we'll be in the hospital for 2 to 3 weeks." But on the inside, I am actually saying things like, "Sam is the toughest baby going and we'll be home in 6 days." I say things out loud like, "it's going to take a while for him to re-learn to eat and we may have sedation issues to deal with again" while on the inside I am saying things like, "TPN and slow-drip NG feeds?! P'shaw! Bran muffins and yogurt, baby, here we come."

Sometimes, my unspoken optimism pans out and I get to feel all happy, perhaps even smugly so. But other times, the things I say on the outside come true and then I have a crash and have to go looking for my big girl pants all. over. again.

So all that stuff my secret optimist said about how this wouldn't be so hard, look what we've already been through, this is no big deal compared to THAT, it'll be a piece of cake... well, that was crap. And the stuff about how this is only a surgery recovery and we are LUCKY we can get this incredible care and a lot of families have it waaay harder around this place... well, that part is actually true but it didn't make this any easier.

Last year's 5 month hospital journey was hard. Really hard. But I shouldn't have assumed that this would therefore be easy. Back then, a good news day was defined by "our baby didn't die." We were surviving. And then healing. And by Christmas, I officially thought we were thriving. Sam was off oxygen, completely orally fed, playing and growing. I was exercising a little, working a little, and finding myself engaged in near-normal conversations with others. My kids had incorporated their little brother into their lives. We were talking summer holidays.

This temporary dip back into hospital land is yuck-o-rama. I didn't like sitting in ICU thinking that my baby might do something awful that I'm not going to name. I didn't like being surrounded by the absolute anguish that exists in that place. I don't like having my family split up. I don't like not seeing my big boys and snuggling them to bed. I don't like watching my baby suffer. I don't like that he has two large hideous bed sores on the back of his head. I don't like him being tethered up so that I have to comfort him in a 3 foot square area or risk pulling out his NG tube (again). I don't like being surrounded by other babies crying and crying with no one to comfort them because the nurses are so busy and their families are too tired or tapped out or far away or, in at least one case, non-existant.

Add to that, Samuel has been struggling. I find this hard because it's never fun to watch your kids struggle but also because the nurses give me a lot of say in his medical care - a *lot* of say - which is great but sometimes a bit overwhelming. Like how am I supposed to know?! And if he is struggling then does that mean I am screwing this up?! I think my competent exterior might sometimes come to bite me in the butt.

From a surgical perspective, everything looks great. However, our Sam's been very agitated and needing to be held and rocked all the time. That means that Chris or I spend 24-7 at the hospital, trading off in the loading zone out front. I can't bear the idea that Sam might lay in his bed alone and screaming. He needs his mama and daddy.

Don't get me wrong. I love cuddling my baby. I also enjoy feeling fresh air on my skin and taking a shower and having an actual bed where I might get actual sleep. And I miss my big kids fiercely. I managed to get outside for walks every day for the first week and was very pleased with my self-care commitment. That's not possible now but I do try to stroll the halls a couple of times a day wearing Sam in his wrap.

Cuddling Sam while he arches and flails is no fun. Trying in vain to figure out ways to make him happy enough to play or restful enough to sleep is exhausting. And after several non-stop days of it, my mama heart is in tatters. I enlisted many other brains - luckily, there are a lot of those here - in my search for the recipe to restoring happy Sam. And finally, I think we settled on a regular mini-dose of morphine (they might have weaned a bit too quickly) plus some real food in his belly.

Today is better. Thanks to our new recipe, I am seeing restful, happy Sam again with a more "normal" recovering kind of bent. He is playing and grinning and whipping his oxygen tubing around like a lasso. And he is sleeping without startling awake every ten minutes (which is how this blog entry is getting written).

Sam snoozing with magical Aunty Denice blanket and his sock bunny from NeeNee.

Sam playing with his JP drain. Gross, I know, but whatever makes him happy.

I am better partly because he is better and partly because a beautiful nurse named Kelly MADE me go home last night to sleep. She was pretty forceful. I thought she might hurt me. It was good. (Kelly has now joined ICU nurses Kat and Eva for a total of three people on the "able to boss Corinne" list. My heart-sister Lori also has some wily ways in this regard. I will put her name on the list in a special category for sneaky bossers.)

This concludes the whiny portion of this blog entry. I feel sheepish for complaining but it felt kind of good too. I needed to say all that because it's real but, of course, there's lots of good stuff that is real too.

I have to say that I am prayerfully thankful every single day for this hospital and this surgery and all the bits and pieces and PEOPLE that go along with that. I am thankful that they gave us our Sam and then they gave us his health and then they threw in a new diaphragm for good measure. Seriously. Isn't that crazy?! Sam is the second CDH baby in Western Canada to get a lattisimus dorsi muscle flap diaphragm repair. The first was his buddy Elliot who had this surgery last May. That is more awesome than I have words for.

Now here's some other good stuff: Sam is on only an eighth of a litre of oxygen. I've elected to keep him on it so that he doesn't have to work at all while recovering from surgery and pneumonia. We're still hopeful that he won't need it come home-time.

Sam's surgery has healed nicely and, as of this morning, he has no more drains or lines. He's now tethered only by NG tube, oxygen and sat probe, which is quite enough when it comes to cuddling but I'll take it. The surgeons are all pleased as punch with him and  are developing a road map to home for us. They don't like giving an estimated time of arrival though. I want to say that it will just be a few more days but my ridiculous optimist self said that a few days ago already. So, for today, here we are.

Sam is up to full feeds via NG tube and we are building back in the oral feeding. Samuel is such a good eater at home that I thought this process would go more quickly than it has. Filling that tummy again must go slowly because it sits against his brand spanking new diaphragm and we don't want to muck anything up in there. He did have a couple of sessions of throwing up Monday night and slowed things down even more but we are moving along nicely now.

Our surgeon (who oversees his care) was awesome in responding to my suggestion that Sam's agitation was partly hunger. Being on continuous feeds means that the belly is never empty but also that it is never full. I mentioned that a fuller belly could help him settle more and she said, "Let's make a happy Sam and if a bit of muffin is what makes him happy, let him have it." So today he had muffin. And also yogurt and pears. Just a little but it did make him happy. I heart our Dr. Mary.

Sam is teething again, a big blister on his upper gum, and I think it's sheer brilliance that he should do this while on Tylenol and ibuprofen and morphine. Very smart. Good work.

The physiotherapist came by to see Sam and was very impressed by what he could already do at just two weeks post-op. I really thought that his gross motor skills would go backwards by a couple of months. (Really. I guess ridiculous optimist didn't chime in on that one.) Turns out that Sam is sitting, rolling, reaching and standing supported much like he was before, with a little less strength and a little more tenderness but no real delays. He'll need some specific physiotherapy as he learns to do things without a left lattisimus dorsi muscle. I am so in awe of how strong Sam is.

Sam poops. After a month of guerilla warfare pooping tactics and a surgery that shuffled his bowels around, this is something to be truly thankful for.

My big boys are just so great as we get through all of this. So great. I'm super crazy about those little boys. Also, I have a pretty great husband who takes great care of our kids AND he has learned some new skills while I am living the hospital life. For instance, Chris now knows how to text on his cell phone, which will shock and amaze those of you who know him. And the other day he worked the big scary thing in the basement that I call Washing Machine. He only had a bit (lot) of coaching over the phone from me. Also, someone broke into our house and made our bed one day. At least, I am pretty sure it was a home invasion but, given the recent show of texting and laundry skills, I suppose it could have been my husband. (Editor's note: you know I adore Chris despite really needing to poke fun at him here.)

As always, we are surrounded by angels. We have our hospital angels - nurses, doctors, respiratory therapists, people who refill supplies and clean floor, the woman at the coffee counter who asks if my baby is back to sharing my muffin yet (yes! tomorrow!). I'm feeling extra grateful for nurses who somehow look after me a little while they're looking after our Sam and at least two other babies. Honestly, I don't know how they do this job sometimes, walking around all full of medical assessment skills and then tossing in some "hey, how about if I also just be an amazing blessing to your family" type stuff. 

And we have our non-hospital angels. My parents were so helpful for the five days that they came here from Arizona. They left again on Tuesday but we appreciate the time that they jumped in to shuttle kids and fold laundry and vacuum and make supper. It also meant that they were here for a big soccer tournament of Daniel's (his team won gold!!) and it was fun to share that with them. We also have Chris' boss, who has made this all so much easier on us with his support and flexibility.

I am super touched always at people who pray for our Sam (and for his family, including a little grace for his crazy mum). Some of these people are dear ones and some are people I don't even know. It has made my faith a whole lot sturdier to have had these prayers surrounding us.

And random food deliveries are just one of those things I never before understood the delight of. Drop off the kids at school and someone hands you soup and shepherd's pie (thanks Sandra and Lisa) and homemade baby biscuits (thanks Heather). Come home from the hospital and there is food - even a valentine's day chocolate cake - on your front doorstep (thanks Aunty Maria, Arleney, Michelle, Amanda, Stacey and Alison). Go to soccer and get a bag of fresh-baked buns and freezer jam (thanks Carrie). Come back to hospital and find a mug cake left for you in the hospital fridge (thanks Amanda and Warren). Get the kids ready for bed and Chris' colleague is on the phone because she's trying to find our house. Angela understands all too well about living in the Children's Hospital so she and angels Kristin and Kevin funded and executed a big Costco shop for us. Amazing.

I look forward to the day I can pay some of this forward. And I really want to tell you about angels Carissa and Lesley. But right now, I have to go snuggle my sweet Sammo.

Sam's self-portrait taken accidentally while playing with my camera. Over-exposed but that's what happens when your arms are only 9 inches long.