Monday, February 27, 2012

Heading home

Yesterday, Dr. Mary gave us a pass to take Samuel home for a few hours. It was glorious. He was so much more relaxed at home and ate better. And I got to have a shower and a nap and eat supper with my whole family around the table. I cried a little when it was time to bring him back to the hospital, wishing I could sleep in my own bed and wake up with all my children in one place. But there were still a few issues to sort out. Yesterday, my list for the surgeon looked like this:

Morphine - off?
Oxygen - oximetry for home?
Feeding - WTH?!

Sam has been refusing to take a bottle at all. Despite many hypotheses about this and much standing-on-head efforts from me, he's just not willing. It's not oral aversion as he will take a soother and other food.  I have not ruled out the idea that he is having some sort of modified hunger strike to protest his continued hospitalization, but I think the more likely culprit is teething. Sam has two big blisters on his upper gum and, despite being on pain meds, it just seems like it would be uncomfortable to put as much pressure there as bottling requires. But he has to eat to grow and heal... so we top him up with NG tube feeds and I feed him yogurt, fruit and other soft bits that I bring from home.



Sam and much beloved sweet potatoes.

They did order him a hospital diet but, well, no one should have to eat what the kitchen sends up for these healing babies. His trays have included things like omelettes (and I use that term loosely) and egg salad sandwiches, which he CAN'T eat, and things like chocolate pudding cups, which he SHOULDN'T eat, really. I did try him with the ice cream, just to see what he thought of it. He scrunched up his face like I'd offered him liver pate. At ice cream! I've requested a DNA test.

So he'll go home with some NG feeds until he's back to taking everything he needs by mouth. So far, the people in the know about feeding have all said, "He'll get it. This isn't worrisome." These are two of my favourite sentences ever.

He's off his morphine and goes home with tylenol and ibuprofen. He passed his overnight oximetry last night and so is off oxygen and monitors. Since I already have been around the block with this feeding thing at home, and everything else looks so good with his incisions and general healing, we are going home.

I have everything in his room packed up to go. I have seen the surgeon, dietician, occupational therapist, physiotherapist, and home nutrition nurse. I've put in a new NG tube and I have supplies for feeding him at home. Various lovely Unit 2 people have stopped in to say goodbye. We're ready to bust out of this joint as soon as our doctor gives the final green light.

Woo hoo!

A final play in our room on Unit 2.

Thursday, February 23, 2012

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.

Friday, February 17, 2012

Remember when I said...

... that things would look a whole lot different in a week's time? Back when things were so bad last Friday and Saturday, I used this as my mantra. And here we are!

Samuel liked being extubated so much that things pretty much flew from there. Milrinone (cardiac med) off. Lasix (diuretic) off. NG feeds increased. Foley catheter out. Femoral line out. Arterial line out. Acute Pain Services called to make a pain management plan and oversee narcotics. Hugged me some ICU folks and off to floors we went. Sam is settled onto Unit 2 in one of his former rooms with his lovely nurse Jenny. He is bathed with clean blankets and peacefully asleep.

This is a long weekend so I requested physiotherapy and dietician consults today to make sure I have what I need to work with him in the next few days. Sam has a half litre of oxygen via nasal cannula, an NG tube, a JP (subcutaneous surgical site) drain and an IV to run his antibiotics and morpine. Oxygen is expected to be off in the next couple of days and I am hoping to start feeding him by mouth soon. And my parents came from Arizona for a few days to help out so I have happy boys at home too. I am one blessed mama.

Thursday, February 16, 2012

Surgery update: What the heck day is this?!

Things have been steadily looking up for our wee Sam. On Tuesday, surgery came and removed his chest drainage tube. Apparently, having a chest drain in is very painful so getting rid of it allowed them to wean a little more on his pain meds and sedation. We are down to a bit of hydromorphone and Sam is looking less druggy all the time. He's also weaned off almost all the cardiac medications that he was put on during his post-operative shenanigans. He just has a whiff of milrinone left.

Yesterday was our hoped-for extubation day but Sam decided to revisit his old friend Ventilator Associated Pneumonia. I have only rude things to say about VAP but apparently Sam needed one more playdate. The doctors wanted him to have 24 hours on the antibiotics that combat this particular strain of pneumonia before extubating him. So we waited.

Sam spent the afternoon crying and unsettled. His cries were extra heartbreaking since he makes no noise with the breathing tube in. I didn't want to take my eyes off of him in case he was in distress and no one noticed. So I stayed next to him but none of my mama charms were working. Then, I discovered the Belly Rub. I think I spent about 3 hours yesterday just rubbing his tummy and gently moving his legs up and down. It was the the only thing that soothed him. To be clear, I did not mind one bit.

At some point that I can't remember because days and nights are all blending and time is all hospital-wonky, Samuel started getting fed through his NG tube. It's just the tiniest amount but has been enough to stimulate some gut action. This would explain the unsettledness and need for belly rubs. I can't even imagine what gas pains feel like in his tiny, recently renovated innards.

Today was either going to be Extubation Day or Hysterical Corinne Day. I arrived in the ICU as the team was gathered outside his room making their plan. Sedation and ventilator settings were ready. Feeds had been stopped. They emptied his stomach via his NG tube, got everything ready and... pulled that tube. Such a super awesome moment. Within 5 minutes, Sam was looking at us and *smiling* and flinging his arms around happily. Within another 5 minutes, he was chewing on the arm splint for his central line and using his wily fingers to pull off all of his probes. His voice is hoarse, almost non-existent, but it will return soon.

Sam, post-op day 2, at his almost worst. His feet were *freezing* from no circulation so I tried socks but they didn't really fit over his sausage feet and cankles. They stopped fitting altogether after this.
Sam, looking just a little more like himself, snoozing with the Valentine's Day pup that appeared in his room that morning with a heart balloon. Thank you, amazing Hospital Child Life people.
Sam this morning while we prepared for extubation.
Our peacefully napping EXTUBATED Sam.

I will get to hold Sam again today. Chris is very sick with a cold and may have to wait another day or two. More than a week without my baby in my arms is not good for my mama-heart. It's also not good for my other boys as they have had to absorb extra mama-cuddle-attacks to compensate for what I can't give to Sam. I think they are finding this a bit much. Okay, I know they are. Because they said so. Um, possibly more than once. Just another reason for them to miss their little brother.

What now? Sam still has some difficulties with his electrolyte balance that need to be fixed so that his heart and other systems are not stressed. He has to come off of a couple of medications and get his central line out and prove to them that he's stable enough to leave ICU. Then we are up to floors to get him eating and well enough to go home. Come on, Sam. Let's go home.

Tuesday, February 14, 2012

Surgery update: Day 4

A quick update on my way to the hospital to greet day 5...

Our Samuel seems to be turning a corner. When Chris and I came into his room yesterday (day 4 post-op), he was opening his eyes to the delight of his nurse and respiratory therapist. When I spoke to him, he tried to turn his head in my direction. He couldn't do it because of the breathing tube - and also maybe because he was still too tired and swollen - but it made me happy to feel like he was coming back to us.

When I did his mouth care, he sucked on the little sponge and opened his mouth for more. I dribbled a few more drops of water into his mouth and he actually sucked and swallowed them. Over the course of the day, the swelling kept improving and I started to see our little baby's face reappear. He's still very swollen but looking more like our Sam again. When I massage his feet and legs now, he opens his eyes for me and wiggles his toes.

The sepsis cultures have all come back negative and so Sam is off of antibiotics. They are weaning medications and ventilator settings. The next steps will be getting the chest drain and breathing tube out. We'll be in ICU a few more days but things are now moving in the right direction. Yay for our Sam!!!

Sunday, February 12, 2012

Surgery update: Day 3

Yesterday was rough for Samuel and there was a lot of activity and consulting and tweaking this med and adding that one. Gradually, his room filled with IV poles and pumps - twelve infusions in all - plus the ventilator and monitors. Chris and I asked questions, noted worried expressions, asked more questions, listened in on rounds, held hands. Our big boys spent the afternoon with Aunty Maria and Uncle Gord and we picked them up before bedtime.

By the time we left, things were looking up a little. The ICU team had settled on the hypothesis that Sam being so sick was a response to the trauma of such major surgery. Other possibilities like sepsis are not ruled out yet, but we're pretty sure what we've seen is his little body going into shock and shutting down all non-essential systems. Our bodies are smart this way; when in survival mode with only so many resources, we put all energy into heart and brain function and let go of things like kidneys, profusion, and digestion until the danger has passed.

Even though our little Sam is still very sick, I am handling things better. I totally misplaced my big girl pants on Friday, was too freaked out to even notice they were missing and go looking for them. I'm sure some of this was adjusting to the reality of what recovery might actually look like for him. Some of it was remembering last year, feeling myself back in that terrifying place.

Yesterday afternoon, Sam's nurse said, "Would you like to do his mouth care?" Based on my response, she could have said, "would you like to eat this chocolate cake and take a trip to Mexico?" Yes! Mouth care sounded fabulous! I swabbed out his mouth, dabbed jelly on his lips, and put drops in his eyes to keep them moist when he is too sedated to blink. Then I gave him a sponge bath, which was a little lame since he is immobilized laying on his back and only about 40% of his front is free of tubes, tapes and probes. But I sponged at what I could and then I massaged and exercised his swollen-fat legs.

This whole thing took over an hour. My mental health increased dramatically from the feeling of being able to do something, anything, for my sick Sam. I hope that the touch was as calming and connecting for Samuel as it was for me. I've been repeating the massage and face care every couple of hours since then, glad of living so close to the hospital so that I could come back late in the night to play out our routine a couple more times.

Today is day 3 post-op. Samuel is still completely snowed by meds but he is not paralyzed. He does not open his eyes or move on his own. He is swollen beyond recognition. But the combination of massage and diuretics is getting him peeing at last so his kidneys are starting to work again. His feet are not freezing cold and his lips are not blue so his circulation is returning. His numbers are all sitting stable right where they should be. They've started weaning some of his medications and ventilator settings - small steps - and he is handling these changes fine.

He doesn't look like my Sam-Sam but I know he is in there. I talk to him and sing to him. I massage and I visualize energy and blood flow coming back into his organs, healing his little body. His brothers miss him but they are okay. Chris and I are a bit beaten up but we have our eye on the prize. Fabulous medical care - check! Super strong Samuel - check! Big girl pants - check! We can do this!

Saturday, February 11, 2012

Surgery update: Post-Script

Something I forgot in my surgery update post from this morning... If you are the praying sort, could you please send some love and strength to my big boys, Daniel, Zachary and Jacob. This is really hard on them and their stress is showing. When they went through the hospitalization last year, Samuel was pretty theoretical to them and they had the support of their grandparents. This year, they are really missing their much-loved little brother and their grandparents are in Arizona. Last night, Daniel called me at the hospital and said, "I miss my Sammy." Broke my heart a little.

It's tough and they didn't sign on for this. We are loving them up extra however we can. They have their really fabulous Daddy with them this morning and their beloved Aunty Maria stepping in too. I just don't want their super-amazing little selves to be forgotten while we focus on Sam.

Surgery update

Sam rocked his surgery on Thursday and is all about healing now. It was 8:10 a.m. when they scooped him out of my arms and walked him down the hall to the operating room. It's still one of my least favourite moments in the whole gig, that time of relinquishing him to the surgical nurse and watching him disappear.

It was 8:10 p.m. - exactly twelve hours later, weird, eh?! - when they wheeled Sam out of recovery and down to ICU. Chris and I were standing in the hallway vibrating when Sam came around the corner in his bed with his legion of pumps and monitors. I was pretty eager to see my baby. His doctors were fantastic at calling updates through to the waiting area, letting us know that he was doing fantastic. But twelve hours is a long haul.

Dr. Brindle was extremely happy with how the surgery went. She came down to us before Sam did and gave us the low-down. Sam's diaphragm patch had multiple small tears in it and there were loops of colon squished up through the holes and into his chest. (This would certainly explain his recent constipation issues.)

The bowel was repositioned, the old torn patch removed, and a double patch used to close the diaphragm. Then the muscle graft was created using the large lattisimus dorsi muscle from Sam's back. The lattisimus muscle was detached at the top, just under his arm. They removed a piece of one of Sam's ribs to make space to pull the muscle through his ribcage and across his abdomen. The tip of the muscle that was at the shoulder was stitched to his existing (right) diaphragm. The phrenic (diaphragmatic) nerve was attached to the muscle so that the brain can tell his lattisimus to act like a diaphragm.

Voila! Sam now has a brand spankin' new diaphragm made out of his lattisimus dorsi muscle. It has its own blood flow. It will grow with him. And the nerve is attached so that - theoretically - the brain can communicate impulses to the muscle to make it contract and release like his own diaphragm. We won't know if that part actually works until down the road. But, even if it doesn't, this is still better than the patch repairs. Sam is unlikely to reherniate again with this repair. 

And can I just say how amazing this hospital and Sam's doctors are? Wow. Thank you, Dr. Mary Brindle, Dr. Rob Harrop, Dr. Frankie Fraulin, and Dr. Ruth Connor. They gave their whole day and a world of talents to our baby on Thursday. Wow again.

Some have asked why they bother to do patch repairs when this more organic and permanent repair is an option. The first part of the answer is that most diaphragmatic hernia babies don't need a repair of this magnitude. Some babies have enough of their own diaphragm that it can be pulled and stitched together without a patch. Others need only a small patch. These kids may still reherniate but it is less likely, less frequent, and easier to fix. Sam had virtually no left diaphragm and he still has a lot of growing to do. Chances are good that he will rupture a synthetic patch over and over again in the coming years. His most recent patch from the reherniation in October lasted him less than three months.

The second part of the answer is that the lattisimus dorsi flap repair is far too invasive a surgery to perform on a newborn. Sam could not have survived this surgery a year ago or probably even 3 months ago. Seeing how he is recovering from Thursday's 12 hour surgery confirms this for me.

Sam came into Thursday a happy, eating, sitting, playing, one-year old with heart and lungs that are strong enough to require no medications and no oxygen support. Now, at 36 hours post-op, things are really rough. First-Birthday-Sam is barely recognizable to me in the Sam laying in his ICU bed now. This morning I brought my laptop to the hospital and I pulled up the photos from Sam's first birthday last week. I showed them to his nurses and respiratory therapists; this is what our Sam looks like. This is who I want back. 

Sam is intubated, holding his saturations fine and triggering his own breaths but not strong enough overall to breathe on his own. That's okay - he needs to rest his new diaphragm so that he can heal. But he fights the tube and the ventilator - always has - and so there are extra sedation issues on top of the sedation and substantial pain management that he needs from the surgery itself. His epidural went interstitial within a few hours of coming back from surgery, even though they hoped to use it for several days. They worked with sedation for many hours yesterday and he was still agitated, grimacing, being a regular wild man. So they started giving him a paralytic to keep him still and calm. It is nasty seeing my baby paralyzed but it's better than seeing him thrashing, fighting, in pain.

All this is part of a bigger picture that isn't so pretty. He seems to have a complex set of recovery issues. And giving meds for one issue often creates another. All day yesterday, he had at least two and often nine or ten people in his room. Both intensivists stood in his room for a good chunk of the day, arms folded across their chests, trying to figure out whats and whys and hows. Sam's blood pressure is labile. His heart rate is high. There is fluid around his heart. His lungs sound good but then don't sound good. He's not peeing. He has a fever. He's terribly swollen. He's pale and his lips are dusky. More tests. More meds. Another IV tree.

All this while I sit outside the circle of people at his bedside, feeling that all-too-familiar helplessness. I chant in my head: This is not last year. This is not live or die. He's just recovering from a big-deal operation and nothing dangerous is actually happening. Everything is going to be okay. My logical brain is reasonably convinced. A few other parts of me are arguing.

I knew it wouldn't be like the patch repair in October, where he was tube-free, breathing, eating, and out of ICU at 24 hours post-op. But I didn't think it would be this bad. I've had to adjust my expectations. I've tried doing what I did last year - living just for this moment. But that didn't work so well because of the overwhelming suckery of this moment. So my new strategy this morning is to remind myself that this will all look sooo much better a week from now. I didn't know that this time last year. Sam is in great hands here, with the amazing, brilliant, talented ICU folks who love him. Everything is going to be okay.

And it's our Sam. Super Sam. He rocks.


Sam getting ready for surgery. Look at that sweet naked chest with the world's faintest scar from repair surgery #1 last February. You'd never guess that his innards are a hot mess.

Wednesday, February 8, 2012

First birthday photos

Samuel's first birthday was full of emotion. I thought it would be more clear - some grateful celebration and some reflective sadness. But it was more just... raw. A couple of other veteran "NICU moms" told me that it was like this for them every year - this rush of vague vulnerability - and their children are all nine. Still, I was taken aback, maybe because it is a feeling that you can't actually articulate. Like many things to do with parenting, you can't know it until you know it.

And now I prepare for the big surgery day tomorrow. Banana bread and cookies made for the boys at home - check. Laundry done - check. Schedules for school pick-ups and child care made - check. Medical documentation and notes about Sam's feeding and vision care compiled - check. Just have to pack our hospital suitcase and get myself and Sam to the hospital for 6:30 a.m.. And then... wait. If my anxious control-freaky self shows up, I'll take her out to the parking lot and rough her up good. But I don't think she will. She had the crap beaten out of her repeatedly last year and doesn't come around much anymore. :)

So to distract/cheer myself... here are a few photos of Samuel's birthday last week, along with perky explanatory captions. Sam is on lockdown prior to surgery to make sure he doesn't get sick so the celebrations were just our wee family. But it was still lovely. And we can have a party when he is all recovered... and when flu season is over.


My thoughtful friend Lisa brought over 1-shaped cookies and some icing for the boys to decorate birthday cookies. The cookie with the head already bitten off is Jacob's. We will continue working on his delayed gratification skills.


Samuel's first taste of shortbread cookies. With coloured gel-icing. To my nutritional goddess friends: thank you for not judging me.


Birthday icing smear session, round one.



All sugared-up and surrounded by balloons from my thoughtful friend Alison, the boys await further birthday celebrations.
 

Mama's famous chocolate cake made and decorated by the big brothers.


GIVE. ME. THAT.

Sam's eyes rolling back into his head during chocolate consumption... it's genetic.

Happy 1st birthday, Sam-a-rama. Thanks for being my awesome littlest guy and truly amazing spiritual teacher. Love you.

Surgery: two more sleeps

Samuel was at the hospital today to meet with his team. It was all good news... despite having his guts creeping up into his chest through a hole in his diaphragm, he's had a decent weight gain this month and he is eating and playing and growing. His lungs sound clear and his heart strong. The pediatrician pointed out that no one wants their baby to need such a big surgery but that Sam is in peak condition to get through this.

He's doing so well that there is this little part of me that wishes I'd ignored my spidey senses and not gotten that chest xray. If I'd just chalked it up to constipation and teething, I wouldn't be staring down this surgery and a few weeks back in hospital. But that's just fear talking because I know he would have kept getting sicker and needed the surgery eventually. His food intake has declined and his constipation and reflux have worsened. He wakes up many times a night now with the belly rumbling and cramping of his digestive system working extra hard. The rational part of me knows that it's good news to be heading into surgery in a planful way with a strong baby rather than waiting for an emergency.

Are you convinced that I believe this? Because I am pretty sure that my out loud voice on this one would sound small and maybe a little whiny.

We'll be heading into hospital bright and early Thursday morning for surgery. In the middle of the day, Chris and I will be participating in the hospital's Radiothon fundraiser (http://www.childrenshospital.ab.ca/), sharing our story in live interviews with a couple of local radio stations. It's a good way to give back to this amazing place that has become our second home... and I figured I could use a distraction that day.

Of course, I have made this into more than a distraction, getting myself so nervous that I felt like throwing up at the mere mention of it and sending neurotic "I can't do this" emails to Trish the incredibly patient radiothon organizer person. I finally realized that I was just displacing my anxiety. Really, as if 15 minutes of being on the radio is the scariest thing happening on Thursday!

So now I am going to bed because I think it only counts as a "sleep" if you actually sleep. To end off, here are a couple of photos of my littlest guy, which might be the. cutest. photos. ever. But don't be fooled because Sam is at least as tough as he is cute. Maybe even tougher.

Sam being serenaded by Daddy. The adorability quotient on this photo is just super-duper high.


I know, eh?! Yum. A. Licious.