Monday, October 24, 2011

Pencil rubbings

I caught myself doing it again - trying to memorize my children. I notice myself studying them, trying to imprint the feel and smell and sound of them into my own cells. With Daniel, it is the long, thin line of his back and the shape of his lips that is just like his daddy's. With Zachary, it is his hands, the out and in and then out again line of his beautiful fingers, and the way he rolls his eyes just like me. With Jacob, it is the way his eyes sit wide of his little freckled nose and the feel of his feet pushed into my back when he crawls into our bed at night. And with Sam, it is still all kinds of new baby things, but especially the squishy soft feel of his newly fattened thighs.

I know that some part of this memorization urge is based on a fear that they will disappear. And in some ways, they will, of course. They will grow up and be big, handsome, hairy men and that will be awesome. But they will not be children anymore and I want to still know this place where they are all soft and sweet and where they still let me cuddle up to their warm loveliness.

I dreamt of this on Friday night after bringing Samuel home from his week in the hospital. In the dream, I was tracing my fingers along Samuel's neck, sniffing that place behind his ears where bigger babies hide their newborn scent for a while longer. I remember doing this type of thing a lot in those first scary weeks where we still thought he might die, especially the day of his first surgery when I feared he wouldn't come back. I could have inhaled him that day, tucked him back inside me where he was safe, where it didn't matter that his lungs didn't work, where I could protect him.

We don't get to do that with our babies, keep them that safe. I knew that before Sam but standing by him while he went through so so so much made me know it more. And I knew before Sam that we couldn't keep them pressed to us, but living with the acute and real fear that he could vanish at any moment made me want to try.

Every so often that vulnerability surges again and I want to hold on extra tight. I take extra pictures and work extra hard to store their words and antics into my memory. But the sound and smell and feel of them isn't something I can keep to take out again another day; that sensory, bodily, momentary experience isn't like the accordion file full of school art projects and successful math tests. Trying to write those things into my neural pathways is just a silly mommy thing I do, and I do it a little more when we've had a scare of our own or when one of the other babies in our CDH community earns wings.

It made me think of the pencil rubbings that my boys did a couple of weeks ago. They collected fallen leaves from our backyard, tucked them under paper and rubbed their pencil crayons over top to get an imprint of the leaf. They learned that you can't press too hard or you get only the colour of the pencil crayon and miss the veins and shapes and details of the leaf. Outside, the trees are getting bare and the air is getting cold and, soon, these pencil rubbings will be all we will have of leaves for a while. That's just how it is. I am reminded to drink in this fleeting moment with appreciation - not desperation. Pressing too hard doesn't make the leaf stay, it just means that the pencil rubbing I am left with will be missing the nuances.

Thanks Giving.

Friday, October 21, 2011

Home. Again.

We got to the Children's Hospital at 3 a.m. last Saturday morning and we came home at lunch time today. Only seven days from start to finish, and that was with an eight hour surgery tossed into the mix. Samuel is back on just 1/8 of a litre of oxygen, full feeds by mouth, with his usual ranitidine (zantac for reflux) plus tylenol and ibuprofen for pain management as he recovers.

Last night Samuel managed to do away with his NG tube. Some would assume this to be accidental but I am starting to get wise to the sneaky and troublesome ways of this boy. He also peed all over himself and his new blankets - this after I said, "now don't pee all over the place, Mommy just needs to grab this.... DOH!"

An almost-naked Sam making eyes at his nurses. Heaven help us.
There are a few challenges still - mostly in the pooping department. Poor little dude is still a bit uncomfortable as his guts get sorted out in there. The symptoms of his visual impairment are also noticably worse right now - his nystagmus is almost constant and his eyes get red and watery with fluorescent or any bright light. This is not fun to watch when we've seen such improvement at home, but we'll assume for now that it's a reaction to the stress of surgery and hospital time.

We are beyond grateful. Grateful for Sam's unimaginable strength. Grateful for the ER people who trusted us that something was not right and got on it right away. Grateful that Samuel's amazing angel Dr. Mary Brindle just happened to be on call last weekend to do his surgery. Grateful to the many, many hospital folks who came to see him, celebrate him, and love him up during our week in ICU and Unit 2. Grateful for the blessing that is our Sam and that he is home again with our other three amazing blessings.

And now he is sleeping and I would be grateful if I could nap too. I've been in high gear all week and didn't quite notice how tired I was. I came home, settled him in, fed him, put in laundry (because *everything* that touched hospital must be washed - ew), ate yummy cauliflower soup that my husband made and then... crash. It will take us a few days to bounce back but really, this is a blip on Sam's journey. Hopefully, we will be blip-free for a while now.

Back home playing with big brother Jacob.

Wednesday, October 19, 2011

Kicking some reherniation butt

Samuel is recovering well from his surgery. On Monday, he went full force on the Tube Elimination Program. He started by peeing around his Foley catheter so that they had to remove it. Later that day, they pulled out his chest tube and the NG tube to drain his stomach. Then the nurse spotted signs that his epidural was not working properly. Anesthesia was consulted and out came the epidural catheter. The only thing left at that point were his two IVs, which went interstitial later that evening and had to be removed.

A little more than 24 hours after surgery, Samuel was tube-free - down to only his plain old nasal cannula and the leads to monitor respiration rate, heart rate and oxygen saturation. He'd been discharged from ICU and was settled in with his familiar, loving folks on Unit 2.

This wasn't all intended. There is no actual Tube Elimination Program at the hospital (in case this wasn't clear) other than what our tricky baby determines for himself. He was supposed to keep the epidural for another day or so since it was providing excellent pain relief without having him snowed. Instead, he was put on IV morphine and, when his IVs had to be pulled as well, on oral morphine. Tuesday involved some juggling to find that place where there is enough medication to manage pain but not so much that he can't wake and eat.

Because he is eating. Already. He'd been soooo fussy and irritable after surgery and everyone who saw him agreed it was hunger. So on Monday morning, less than 18 hours post-op, we gave him a small amount in a bottle. He sucked it back in seconds. I had to use my adult strength to wrestle the bottle from his baby grasp since we wanted to go easy on his belly for those first few feeds. And then he slept, a peaceful sleep rather than a "since you nasty people won't feed me, I guess I will sleep" sleep (which was usually a 20 minute nap followed by more hunger crying).

A snoozin' and a healin'.
(And a wearin' socks on my hands because I am lacerating my nose with my fingernails.)

Sam is almost up to full feeds by bottle, no tube feeds. His oxygen is at a half litre and we will wean when it seems like he's strong enough. He really doesn't need to work even a little harder to breathe right now. One of his cultures from the ER came back positive for endorhinocrapiolasomething. Yea, I didn't totally get the exact medical term but the translation is that he has a cold. So eating and sleeping is quite enough. His next hurdle is pooping. That can't be comfortable on those wee wonky intestines. His doctor is super pleased with him and excitedly told us about the big, beautiful lung that she saw on the "defect" side of his chest. Glorious news.

As of this morning, Samuel is off of the morphine and on a schedule of Tylenol and ibuprophen to manage pain. He is comfortable - sleeping, eating, waking. Last night, Auntie Lori came to hang out with him so that I could be home with the big boys and Sam gave her one of his famous smiles. Our boy is coming back.

Auntie Lori and Seth came to visit the day before we ended up in hospital.
Sam: "This is boring. I think I will blow a hole in my diaphragm patch."
Auntie Lori: "Look how sweet Sam is in this racoon hat I brought him!"
Seth: "Back off, Racoon Hat Boy. This is MY mom."

The big boys have had a bit of an odd reaction to all of this. It's kind of like they've needed to pretend there was no Sam; no matter how many times we told them that Sam was in the hospital, they didn't seem to understand, didn't seem to want to. Jakey keeps looking in his crib and asking where he is. Zachary has wanted to come home for lunch when he knows that I can't bring him home because I am at the hospital through the day. Daniel will hear a bit of what we tell him about Sam and then change the subject - and right now, it's not easy to break through his haze of soccer passion.

It makes sense to me that they are reacting this way. I have found this hospitalization difficult too. For many months, Sam was our baby who lived at the hospital. Now he is a full-on part of our family. He's supposed to be here at home with us. Having him in hospital again feels like going backwards, even though I rationally know that it's not. If Sam can keep up with his recovery, he could be home by the weekend and we will have our family back under one roof again.

This means that Sam should be home for his first Halloween. Nana and Boppa took the big boys to the Halloween store on Sunday. They picked out their own costumes and even some pirate stuff for their dad. Jakey tried to dress me in various things that are, um, incongruent with my age and body image. No skanky Bat Girl outfit for me! I will dress up as a tired old mommy this year. Should be big fun.

Jacob gets Sam into the Halloween spirit.

Oh, and I also found something to gross out my boys! Daniel overheard me telling Chris that Sam's Foley catheter was out and he asked what that was. I told him. He exclaimed, "he had a tube in his PENIS?!" and then Chris and I watched as the heebee jeebees raged through his 9 year old body. My kids spend considerable time grossing out their mother with their boy "humour" and so I am allowed to delight in having a bit of ammunition of my own. A little bonus from our Sam's journey.

Monday, October 17, 2011

Surgery - part two

First, thank you so much to the many of you who have sent prayers, love, and offers of help through email, text, blog and facebook. Wow. Second, Lesley... AS IF I would go to the hospital without the prayer beads you made me. :) I have worn them the whole time - as I do nearly daily under regular circumstances. They bring me comfort and I am always so thankful to carry with me some of your special brand of juju. I love them/you.

I was still pretty zen when I wrote that earlier update. By about 3:00, my zen-ness was starting to expire. I was antsy, did some pacing, thought any minute they would wheel my baby through the door. I did an excited half-lunge anytime someone walked a little too close to our room. By about 4:30 I could feel a voice rising in the back of my throat that said, "I WANT MY BABY" and it sounded a little like something out of The Exorcist. 

We got a couple more updates from the OR and they were reassuring. Finally, Dr. Brindle came to see us. She was smiling big and super excited about how well Samuel had done. She made us one of her famous drawings on paper towel to explain what she'd just done to our baby's innards.

Sam had a reasonably small hole in his surg-assist (pig intestine) patch and there was a bit of bowel and stomach that had made its way through the hole. She did a double patch on the hole with surg-assist on one side and goretex on the other. This way, as Samuel grows and things stretch or slip, one patch can fill in where the other might not.

There were no outward respiratory symptoms of his reherniation; we didn't notice changes in his respiratory rate or colour or profusion. Signals were his decrease in feeds, an unusual flavour of fussiness, and his great big vomit session. It appears that his lungs were unscathed by their latest bowel encounter and his heart held up fine also. It was a good reminder that reherniation doesn't always show up in an obvious way and Chris and I are glad that we listened to our instincts.

Samuel is growing muscle tissue where his left diaphragm was missing. This is remarkable and fantastic news. While it is common for some kind of scar or fibrous tissue to grow in where the diaphragm should be, it is less common that functional diaphragm muscle grows there. Our fabulous nurse Kat compared Sam to a frog that regenerates severed limbs. Heehee. Really though, this would mean good news for his breathing capacity in the long term and may also decrease the chances of future reherniation. I don't think that Sam will ever top the Secret Lung trick he pulled for his first surgery, but Secret Diaphragm is certainly an excellent encore performance.

Samuel was intubated for surgery and we were told to expect that he could remain intubated for a couple of days while he recovered. However, he did so well that he was extubated before he left the OR. He came back to us with NO breathing tube - just some oxygen via nasal cannula as before. He is a bit tubed up in other ways - an NG to drain stomach contents, a chest tube to drain fluid around the surgical site, a Foley catheter, and the old familiar leads on his chest to monitor respiration rate and oxygen saturation. He has an IV to give fluids and an epidural to offer pain relief. These things will fade away as he recovers over the next couple of days.

Chris and I were both able to hold and snuggle our Sam as soon as he was settled back into ICU after surgery. He was gone nine hours - the longest that I have been away from him in the three months he's been home from hospital! We went home to put the big boys to bed and toss in some laundry, then I came back to be with Samuel. He is resting peacefully now, although he has woken up a couple of times and expressed intense displeasure at having an empty belly. Hopefully, we'll be able to start feeding him slowly tomorrow because being hungry is *not* working for this baby.

As soon as we knew from Dr. Brindle that the surgery had been so successful, I became a bit ridiculous. I teared up at witnessing her genuine excitement over his progress. I teared up telling the respiratory therapists here in ICU that he was coming back without an endotracheal tube. I teared up when the cafeteria lady asked us how our son was doing. It's embarrassing. But my awe and gratitude... well... there are no words.

I'd prepared myself for him to be pretty beat up by this whole thing today. Granted, there are some new scars for the surgical incision and chest tube drain and there are a whole lot of poke marks where they tried (unsuccessfully) for arterial and central lines. But mostly all I could think of when I saw my Sam's sweet face after those nine hours was... he's so beautiful.

Our recovering super-babe.

Sunday, October 16, 2011

Surgery - part one

Back to some therapeutic blogging for me as we wait for our wee Super Sam to come back from his diaphragm repair surgery. A little after 9 a.m., we walked Sam and his IV pole and oxygen over to the OR to meet his surgical team. The anesthesiologist's start to the surgery was expected to be an hour - but at 11:00, his surgeon still hadn't been called into the OR. This would have been worrisome if we'd allowed ourselves to go there. But we didn't. And we don't. I have learned to give over these things that are not mine. This part is for some really, really smart, amazing, capable, dedicated doctors. And god. I don't have to carry it. The last thing Sam's surgeon said to us is "we're going to take really good care of him." I believe her.

Chris and I went for something to eat and we talked about all the ways this surgery is different from his first diaphragm repair. This is a patch, not a creation of a diaphragm, and we think the reherniation was identified early so that hopefully things won't be too messy in there. Samuel is so much stronger now. He knows how to eat and babble and grow. He has had six months of breathing on his own. The purpose of this surgery is to fix him up and get him back to being a normal baby as soon as possible. The purpose of the last surgery was to see if he could survive.

Chris and I are set up in our ICU room waiting to see our Sam again; it's been nearly five hours since I kissed his wee head and told him no monkey business in there. (However, I did mention that his "Secret Lung" trick was a huge hit last time so it's okay if he wants to pull something like that out of the hat again.) We got a message from the OR saying that "everything is going well and Mary (Dr. Brindle, our surgeon) is happy with things." And so we wait. The noises and smells and functions of this place are familiar. Even better, the lovely people are familiar. I thought being back here would be scarier or somehow difficult. But it's oddly comforting. What he went through within these walls the first time around was so much bigger than this that it just feels like it has to be okay.

More news soon.

Sam and Daddy sharing a pre-op giggle.
Mommy gets ready to send Sam off to surgery.

Sam has pretty much never worn hospital clothes
- but he looks kind of cute in his open-at-the-back mini hospital gown.
"No need to worry, folks. I am SUPER SAM."

Saturday, October 15, 2011


On Thursday, I realized that Samuel was not eating well at all. He was eating 30 ml at a time when he would normally eat more like 120 ml at a time. He seemed fussy, wanting to be held all the time rather than his usual desire for playtime. By Friday afternoon, all of this was magnified - less eating, less playing, more cuddling, more fussing.

I told myself he'd gotten his brothers' cold - which was true - and that this was the way his little self was processing it. But I worried that he wasn't eating or pooping and that he seemed more and more irritable and inconsolable. Chris and I were taking turns cuddling and walking with him but nothing was working. At 2 a.m., I put in an NG tube in the desperate hopes that we would be able to settle him with a little more food in his stomach. We had been done with tube feeds six weeks before but I always knew that we might use the NG again if he was sick and not strong enough to take enough fluids by mouth.

We started a slow drip of his feeds. Ten minutes later, Sam started to throw up massive quantities. Chris and I didn't even speak as we cleaned him up, changed his sleeper, and packed him up to take to Emergency at our Children's Hospital. At 3 a.m., with 20 minutes of sleep under my belt and a slow burn of worries, we were checked in and waiting for doctors. By 6 a.m., Sam had had chest and abdominal x-rays, blood, urine, and sputum cultures, and was sporting an IV in his tiny wrist. By 9 a.m., I had managed another 20 minute nap and an evaluation with the surgical resident. We were waiting for our surgeon to come in and confirm what the doctors all thought likely; Sam had reherniated his diaphragm.

Throughout this, I was pretty calm. I worked diligently to soothe my fussy little man, visited a couple of the lovely nurses back on Unit 2, and felt sure that we would head home pretty soon. It reminds me a little of the total denial I experienced when my water broke with Samuel on his birthday, how I really figured that they would just check me out and send me home.

So Samuel has bowel up in his chest. It's not a lot and the left lung is still inflated and functioning almost completely. But there it was on the x-ray and then again on the echocardiogram. No wonder he is cranky and doesn't much want to eat - I wouldn't be that happy about my guts getting all cozy with my lungs either.

That Samuel's diaphragm repair would rupture is something we expected would happen at some point. He had virtually no left diaphragm at birth. The diaphragm that was made for him cannot stretch enough to manage his fast baby growth. We had kind of hoped he would make it a bit longer before reherniating - that he would be that much bigger and stronger before tackling another big obstacle.

And so Sam will have surgery tomorrow. He will be intubated and have an epidural and pain meds to deal with again. He will have his sweet baby chest cut open again. He will be off his feeds and have to start all over with little drips to stimuate his intestines once they are all tucked back into his belly again. The surgery could take anywhere between three and eight hours. We won't know the exact condition of the diaphragm until our surgeon gets in there to do the repair.

I had some tears, some of it foot stamping petulance because I just wanted to go home, some of it panic as I jumped aboard the worry train. Reviewing with the surgeon and anesthesiologist, it's never fun to hear words like stroke and cardiac arrest and to anticipate another possible intubation and narcotics withdrawal process. As much as I love those ICU folks, I really don't love that we will get to live with them again for a few days.

But so it is. It will be okay. Samuel is one tough little man. And honestly, I'm pretty tough too. Besides, the doctors have the hardest job. Sam just has to lay there and then apply his considerable healing strength to getting back home again. And I cant do anything more than hang out and love my baby; luckily, I happen to have some talents in that arena.

Samuel is sleeping now back in a crib on Unit 2. He is surrounded by blankets and cozy sleepers and a few special items from home. The anesthesiologist is strategizing the bits and pieces of working with this baby and his unique anatomy and history. The cardiologist gave the green light that his heart is strong enough to sail through this surgery. His surgeon is - we hope - home sleeping to be bright-eyed and busy-tailed for morning. Sam's IV pole is ready to provide fluids when he comes off of his feeds at midnight. I will stay the night at his bedside and Chris will come in the morning when my parents arrive to spell off with the big boys. We will send our baby off to surgery, holding tight to the one truism we can always land in during moments like these; love is bigger than fear. Always.

I'll keep you posted. Prayers and healing thoughts sent to our baby - and his amazing caregivers - tomorrow morning would be greatly appreciated.

Sleeping peacefully in the ER while we wait for news.

Friday, October 7, 2011


Our Sam is eight months old. Last year at this time is when all the really bad news was coming at us. The fetal morphology ultrasound and echocardiogram confirmed what we already knew - a severe and early-onset congenital diaphragmatic hernia, stomach and bowel up there next to the heart, heart squished over to the right. Then the MRI gave us the really damning information - liver up in the chest and a total FLV (fetal lung volume) of 22.5%. After that, there was no doctor who had much hopeful to say.

And yet here he is. He grew himself a couple of lungs, including one stuffed up in there with bowel, stomach, liver and spleen. His heart is 'perfect.' He weighs more than 14 pounds and is outgrowing his 3-6 month clothes. He is babbling and communicating. He gets all of his nutrition without tube feeds and now he is starting solids. He pees and poops and burps and plays.

When Sam was about six weeks old, we started to let it sink in that we might get to keep him. I started practicing saying, "I have four sons." I don't practice this anymore. It just is.

Sam's new favourite noise is made by smacking his bottom lip against his top gum. It sounds like he is making a kissing sound so we (okay... "I") pretend he is blowing kisses. For a while, I tried to make the same sound back to him but it was never quite right. I realized this is because I have teeth. You can't replicate this sound unless you have naked gums to smack your lips against. Sam's Great Uncle Willy is always happy for an excuse to pop out his teeth and freak people out, so I am sure the two of them will have a great time together. (Sorry Uncle Willy, I couldn't resist.)

Making kissy faces with Mum.

Samuel started solids about a month ago and we've been going very slowly. Even though he's done fabulously with feeding so far, we are still aware of possible issues of oral aversion and a weak swallow reflex. We never put something into his mouth before he opens his mouth to invite it. We watch his cues and respond when he pushes things out with his tongue. He is fed side-lying so that any extra milk pools in his cheek and he can pace his own swallowing. As he's getting stronger, he can drink sitting more upright without dribbling it all out the corner of his mouth.

We've been similarly cautious with introducing solids. We offer very runny foods by spoon, putting just a bit on his lips and letting him explore it, only putting the spoon in his mouth if he opens up for it. The OT said he would just "get it" one day - and today was that day. He was opening his mouth and wanting more. He didn't take a lot but it was still good practice. He even grabbed the bowl, stuck his hands in it, and managed to splatter some against the wall nearby. I am excited to start making my sweet potato biscuits and other baby foods. I am less excited to start scraping baby food crud off of every surface in the house.

Eating! Mmm-mmm!
Sam has gotten a lot stronger in the last while and is getting closer to sitting on his own. He brings his feet up and entertains himself watching them, but he can't put his toes in his mouth as it compresses his oddly positioned stomach and he throws up. He does well in tummy time and has figured out how to get his knees underneath his body. Unfortunately, he has not also figured out how to push all the way up on his hands instead of just his elbows, so his new knee trick results in a face plant.

He is comfortable in the Bumbo and the Jolly Jumper now, which has given him some new places to play. He bounces gently in the Jumper until someone speaks to him and then he gets busy jumping vigourously and grinning. He is a bit of a performer and, while we will never match the attention he received for those first several months, his brothers are an appreciative audience. He's a super happy, smiley guy.

Jakey and Sam having a play.
In the Jolly Jumper.
(Those wee chicken legs are thanks to his Mama, thank you very much.)

We had respiratory/diaphragmatic hernia clinic a few days ago - the biggie where we see respirologist, pediatrician, OT, dietician, respirtory therapist and sometimes surgeon. We were at the hospital for four hours. There were not a lot of changes except Sam's oxygen is down to a flow of 1/8 of a litre - just a whiff, really - and he can be on room air pretty much any time he is not eating or sleeping. We acknowledged that he has done fabulously without the NG tube and so he is officially tube-free. We made some feeding and development plans. We do not have to go back for two months because Samuel is doing so well.

Probably our biggest concern now is the impending flu season. Samuel is strong - but not that strong. A cold or a gastrointestinal illness he could probably manage, although it may involve hospital visits or stays. Influenza or RSV, however, could be more serious for Samuel than I care to think about. So we walk that line between being non-chalant and living in a bubble. We wash our hands and take our vitamins and probiotics. Sam will be staying home from birthday parties and soccer games. But he is part of a family of six and we've had enough of missing him being with us. He handled a whole afternoon of loud Terry Fox activities at the boys' school (although his "LOUD" tolerance has got to be pretty darn high living in this house). And this weekend he will have his first Thanksgiving gathering.

Peaceful sleeping. Look at those wee fingers and that sweet skiff of hair. Yum.
I know that some people have wondered if Samuel has any neurological difficulties because of his beginnings. It's a good question - one that I asked over and over again of different people along his journey. The doctors have never had concerns in this area. If there had been any signs or reasons to worry, Sam would have had an MRI of his brain. This was not deemed necessary.

Developmentally, Sam is more like a six month old than an eight month old. I sometimes think of his extubation date as his birthday since before that he really could do nothing like a normal baby. That day that he could finally breathe on his own was the day that he could start to move and grow and use his muscles, to see, hear, and interact with his world, to be picked up, dressed, and bathed. If I think in those terms, Samuel is right on track. It also makes me feel like I missed less of his babyhood than if I let him be eight months old already. Win-win.