Tuesday, December 20, 2011

TEN (and a half) MONTHS OLD!

Somehow I haven't managed to keep up with the blog much lately. I don't know if it's the having four mini-gorillas children thing. Or the high-maintenance baby thing. Or the preparing for Christmas thing. Or the return to work one day a week thing. Or the physical and psycho-spiritual exhaustion that has accumulated over the past year and a half thing....

But here I am. Samuel is ten and a half months old, which means that he has been at home for longer than he was in hospital. Here are a few of his latest tricks:

Sam went swimming for the first time at the warm salt-water pool near our house. This is something we always liked to do as a family and I haven't been since Sam was in my belly. The fear of pool germs has kept us away but I really wanted to do something 'normal' as a family. I can't say if he loved it or hated it. He seemed pleased enough in my arms but was very still and quiet, which is often a sign that he is just a bit overwhelmed by stimulation and unfamiliarity.

Samuel got to participate in his first Christmas decorating marathon with Uncle John. Every year, Uncle John comes out from Vancouver and we go pick out a tree and spend the weekend making our house all festive. Since Uncle John only comes a couple of times a year, we make him go hard on kid-entertaining and tree-decorating and light-stringing activities. Pulling out the decorations this year triggered many memories of last year when I could hardly move under the weight of my physical pregnancy complications and overwhelming grief. What a difference a year makes.

Our four boys with Uncle Michael and Uncle John.

Sam is starting to move from hospital transition services into more community aid services. We've been cleared by Thrombosis clinic (who were following his femoral blood clot) and Cardiology clinic; both will see him every year or two now. Genetics is still interested in his vision issues but there is nothing to indicate a genetic component to his diaphragmatic hernia. With his oxygen needs on the way out, we are being discharged from Respiratory Home Care. Kari, Andrea, Colleen and Lucie became a really comforting, helpful, lovely part of Sam's care over the past five and a half months. When I realized a couple of months ago that we wouldn't have them forever, I felt panic. But now I just feel kind of sad because I care about these women and they care about Sam. I'm forever grateful for the reassurance and guidance they have given us. But it is time.

Playing in cool activity centre.
We had an intake with the CNIB - Canadian National Institute for the Blind. I felt both relief and distress about this. We've had many supports for his diaphragmatic hernia and few for his (unrelated) visual impairment, so I am pleased to have more help in this regard. But I'm having a bit of trouble wrapping my head around the word "blind" in reference to my son. I know that "blind" is a relative term and we don't actually know how our Sam sees and we're so fortunate in the grand scheme of things. It still kind of sucks.

Speaking of things that suck... the helmet is done. Is his head perfect? No. Is it fine? Yes, and it will continue to grow in the right ways on its own now that he is upright and mobile. Was it the right decision to let this go, given the ongoing problems we were having with it? Yes. Do I feel guilty as his mama for not managing that stupid thing better? Yes. Oh yes. So we won't talk about it anymore. It has been bequeathed to another boy needing some head remodelling more than Sam.

That's one pricey headpiece for a stuffie. It doesn't fit this pup any better than it fit Sam, but the pup complains less about it.
We are now also connected with Family Supports for Children with Disabilities for any resources Samuel needs for his vision, and with Infant Services, where we have access to physiotherapists and the like to help Sam catch up with feeding, speech, and motor skills. Most of his developmental lags are in core strength, which is to be expected since he was intubated for more than two months so didn't even use his core muscles to breathe, and he spent more than three months laying in a bed, unable to be upright or do tummy time. He took another hit in October with the reherniation surgery and hospitalization but we are seeing his strength grow daily. (I should probably be participating in his pilates exercises myself!)

Samuel recently figured out that rolling was more than a surprise occurence while reaching for a toy; it is a way to get from point A to point B. Every couple of rolls, he will stop and clap his hands and his onlookers will join in with a "Yay Sam!!!"  

Ha-HA! They think they can put me down waaaay over there and I won't make it over here to check out this pyramid of sparkly light and sprucey scent?!

Thanks to my ninja skills of rolling and plucking ornaments off the tree, the taste of this Christmas bell will not be lost on me this holiday season. (Lock up your chokables, mama.)

Wha?!

In addition to rolling as a means of transportation, Samuel has figured out that eating "real" food is a means of nutrition. (Okay, he might not have it all consciously constructed this way just yet.) I have the most profound gratitude that my baby eats. It is something that most of us take for granted with our "normal" babies, but babies like Samuel very often have severe reflux and oral aversion issues that impede their eating. Some of them don't take food by mouth at all. Some of them learn to eat but have g-tube feeds to supplement their calories so that they can grow. That is just what must be done for those sweet kiddos but I am always reminded how lucky we are.

Sam eats. Not a lot and he's still not all that good at it; we're working on some things with the occupational therapist to keep him going. But he eats sweet potatoes and pears and bananas and yogurt. He eats biscuits and purees and small soft chunks. He even grabs his bottle and feeds himself, usually managing to jab his eyes and nose before making it into his mouth. He sometimes spits things out because he can't figure out how to swallow them - but most babies do that and I am just happy that he is learning how to move food around in his mouth and manage different textures and tastes. Super happy.

Samuel is doing really well. I think about what we were told to expect by our consulting perinatologists, neonatologists, and surgeons, that IF he lived, he would have major feeding, developmental, sensory, and possibly neurological issues. He is not the baby that experts predicted. So I swing back and forth between "whew! they sure got it wrong!" and "what am I missing?!" There is a quiet hypervigilance, partly born of months of roller-coaster fear and partly based on a sense of waiting for the other shoe to drop.

My friend asked me if I ever asked why me and I said no because my answer is always, why not me. But lately I find myself wondering, wishing I could make sense of what just happened to our family. People say that we've loved him well and we believed in him. Yes. They say that he had amazing medical care and he had so many people loving and praying for him. All true. But so did these other CDH babies who didn't make it. The mamas of Rowan, Levi, Grace, Maddie, so so so many others, they didn't get their miracle. In their honour, I won't take our miracle for granted. Not one minute.

Hanging with Daddy (who is making a demented face, as usual, and thus has been edited out. Sorry, Chris.)
Our 10 months old Samuel.

Wednesday, December 7, 2011

Oxygen-free

Our Samuel is off of all oxygen. He went off of daytime oxygen a month ago and did fine, continued gaining weight and holding his own. Each night, we hooked him up, supporting that time during sleep when our respiration rate naturally slows.

A couple of nights ago, we did an overnight oximetry. Sam spent the night off oxygen and attached to the old familiar pulse ox monitor. If his saturation levels or respiration rate dipped below a certain level, the monitor would have alarmed for us to reconnect his oxygen. But it didn't. He slept soundly. Chris and I slept less soundly, interrupted by our need to stare at the numbers on the monitor.

The next day, we saw Samuel's respirologist and had this conversation:

Dr. Mitchell: Well, his oximetry was excellent. His mean saturation was 94%, just like you and I would do overnight.
Me: So you think we should take him off of night time oxygen?
Dr. Mitchell: Yes.
Me: So then the...
Dr. Mitchell: The company will come and take the oxygen equipment out of your home.
Me: And then what if he...
Dr. Mitchell: If he gets a respiratory infection, you call and we will help you manage it. He will get more oxygen then if he needs it.
Me: And then so we...
Dr. Mitchell: You will have another oximetry in a week just to see how he is, but we are considering him officially done on oxygen.
Me: You have had this conversation about 5 bazillion times over the course of your career, haven't you.
Dr. Mitchell: At least.

So that is it. I came home and took down the "No Smoking: Oxygen in Use" sign from the front door of our house, tore it in half and handed it to Chris. Just to be clear, even though our baby is no longer attached to a flame accelerator, there's still no smoking at our house. Indeed, smoke around my baby and I will kick your arse. But it was cool to do away with the "oxygen in use" part.



Done. No more tapes on his face. No more making him cry when I peel the tapes off. No more sneaky hooking up the nasal cannula when he's fallen asleep. No more fretting that the tubing will come untaped and wrap itself around his neck during the night. (I know. I'm a bit of a freak.) No more worrying that he's too close to the fireplace. No more oxygen converter whirring away in our house. No more tanks tucked under the dresser. No. More. Oxygen. Our 10 month old Sam is gonna be breathing the same ole 22% oxygen "room air" stuff that you and I breathe.

Blessed be.

Thursday, November 24, 2011

Tooth

Samuel cut his first tooth this week. Despite the fact that he is my fourth baby and I have been through lots and lots of new teeth, this is really special to me. I can't help but put my finger in there several times a day to feel the ridges of that little tooth poking through his bottom gum. It feels like the first really tangible marker of his normal baby-ness.

Samuel's "baby's first year" calendar has stickers for the normal baby milestones. First bath... he couldn't tolerate touch for the first few weeks and couldn't have a real bath for a couple of months because of all his lines. Had a haircut... he had several in the NICU when they shaved random patches on his head for scalp IVs. Slept through the night... an IV drip of Fentanyl and Medazalam will do that for a baby. Visited the doctor... well, that one just kind of makes me laugh.

Sam's milestones are different. He opened his eyes for the first time when he was seven days old. He came off the oscillating ventilator when he was ten days old. He battled his first bout of pneumonia when he was eighteen days old (and his second bout a month later). He had surgery to reposition his guts and build a diaphragm when he was twenty-five days old. He wore a sleeper for the first time when he was thirty-nine days old.  We first heard his cry and saw his whole mouth when he was extubated at sixty-three days old. He felt the outside air and moved from the PICU when he was ninety-one days old. He took food by mouth for the first time when he was ninety-four days old. He came home to us when he was one hundred and forty-eight days old.

There are no stickers for "breathed on his own" and "cuddled with mum" because those things are assumed to happen right off. There are no stickers for "got a life-threatening blood clot" and "came off Methadone" because those things aren't supposed to happen at all. Sam had a different story. We made it up as we went along.

I bought Sam his calendar on March 11, the day that Dr. Ross said to me, "now that we no longer think he is going to die...." It is the same "baby's first year" calendar that I had for the other boys but, until that day, I couldn't bring myself to buy one for Sam because I didn't think he would get a first year. The "first tooth" sticker is the first of the really normal baby milestones in his calendar. There are more to come as he crawls and walks and says ma-ma. But for now, I am loving that little tooth in there.


Wednesday, November 9, 2011

NINE MONTHS OLD!

Last week our Samuel turned nine months old. This has always felt like a milestone with my babies - that point where they have been on the outside for as long as they were in. It was a bittersweet marker for Samuel, thinking of how his nine months have been, well, atypical. I don't feel like I have had nine months with him. But time is bit of an arbitrary system once you have children.

I read a beautiful article on another mama's blog today that brought home how parents are driven to make a future for our children but maybe we don't do well at really, truly loving in this blissful moment. I always appreciate the reminder to show up here and now. I think that's been one of Sam's gifts to me - simple things like playing peek-a-boo with Samuel and making lunches my kids really like take up more space they once did. Which is lovely. And I am pretty sure my kids won't miss getting on some magical success train because of it.

Okay, so here's a run-down on nine-month old Samuel:

He's recovered brilliantly from surgery. It was only a few days where his wounds were tender and he seemed out of sorts. His stomach had to stretch again after its time spent squished up through his diaphragm. He was eating smaller amounts more frequently (read: waking every two hours through the night like a newborn) and his weight gain slowed. But, even with his surgery and hospitalization, he gained weight respectably over the month and is now recovering more regular eating and sleeping patterns.

Here is Sam looking all peaceful and beautiful and innocent. One would not guess the torture he meted out on his old, tired parents through the night.
Samuel had his Audiology follow-up and we will go again in a few months. I was hopeful that he would get the "all-clear" on the hearing but we will continue to monitor developmentally just to see how he progresses. Good news is that his responses to the human voice sounds were perfect at all frequencies and volumes. This fits with the full-on interaction he has at home with his brothers and parents.

Daniel plays with Samuel and helps with his physiotherapy.
Here they are working on Sam's rolling skills.

Zachary reading bedtime stories to Samuel.
Diaphragmatic Hernia/Respiratory clinic included an "all-clear" from the dietician who follows his growth and the occupational therapist who follows his development and feeding. We also got the "all-clear" to take Samuel off of daytime oxygen. Just a little milestone there.

Yea, okay. That's a big milestone. :) No more dragging a portable oxygen tank with us everywhere (although we will keep one in the car always just in case) and no more having Sam attached to 50 feet of oxygen tubing as we move through our house. The tube will no longer catch on furniture and feet and will no longer knock over dominos tracks in the making. Woo hoo!!! He will be hooked up to his nasal prongs for sleeping, still at an 1/8 litre, which truly feels like no big deal. His pediatrician said yesterday that she thinks he is just going to sail very quickly from here.


Samuel trying on Daniel's new winter boots. Okay, so he's not THAT big.
Samuel has also finally taken to eating solids. We are going slowly and helping him to desensitize his gag reflex. But he gets it. Yay! I am back in the world of stained bibs and pureed pears mushed into corners of my kitchen and wardrobe. Yay again!

Sam is doing well with eating solid food, which does not normally include the wings of toy planes.

Sam was a pumpkin for Halloween. And also Superman. Yes, he demanded a wardrobe change mid-way through the evening. Such a diva.

Pumpkin, as called by Daddy.

Superman, aka Super Sam.

And just for good measure, a photo of scary big boys.

Oh and for all you helmet watchers out there, I continue to do battle with the hideous helmet. Man, I have issues. The most recent hospitalization didn't do great things for Sam's head shape progress. He spent more time laying on his back and dealing with the helmet was not on the post-surgery radar. We are back on track again now, hoping for a lovely rounded skull and a farewell party for that stinkin' helmet in the next couple of months.

Onward.

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

Reherniation

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

EIGHT MONTHS OLD!

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.

Tuesday, September 27, 2011

Messed-up head

I appear to have a complicated relationship with the helmet that Samuel has to help remold his messed up head shape. We paid $1500 that we don't have for that sucker. He should be wearing it. It's important. It's temporary. It's a good thing. And it's not really such a huge deal after everything else he's been through.

And yet, I hate that hunk of plastic with a fervor. Samuel screams when I put it on because it hurts (although he settles quickly and gets used to it). It makes his head sweaty and smelly and it sometimes tilts so that his eyes get kind of smooshed up. And it's hard to pretend that your baby is all normal and well when he has that thing on. And 23 hours a day is a lot. And I'm already pretty overwhelmed trying to keep track of his appointments and medications and development stuff without logging helmet hours and multiple checks for fit and red spots. So I resist, tell myself he doesn't really need it, it's too hot out to wear it today, he's had enough already without that thing on his head, blah blah blah.

But yesterday I saw a picture of him and realized his head IS actually a bit wonky and I am going to regret it if I don't go hard on this treatment while his skull is still malleable enough to fix. So I said to myself, suck it up, princess. Let's do this helmet thing and do it right.

Wearing superman shirt rocks. Wearing helmet sucks.
Having such a ridiculous response to this whole helmet thing made me realize that Sam's head may not be as messy as mine. But there ain't no plastic remolding device for what ails my head. It's a leeetle more complicated than that. Sometimes I just don't want anything else to "manage." I'm not so sad as I was a month ago... but I feel a bit lost. I know I am not who I was before this all happened but I still don't know quite what that means. I don't belong in hospital-sick-child world anymore - thank goodness. I also don't belong in the world I lived in before. So here I am. My worldview is different. My relationships are different. My sense of non-mama self is different. My heart and spirit are different. And don't even get me started on my body because I know I have some serious health-induction to do there too. I am transitioning into my new self and, while a bit unsettling, I trust. It is all good. Or at least, it is what it is.

Sam continues to do well - so well, in fact, that the home care team noted that they might not need to come weekly or at all for that much longer. I responded to this by making some lame jokes that were actually a signal of my panic. I'm not ready to have less support just yet. I fear that I have duped them into seeing me as competent to take care of him on my own. I will find ways to screw up more blatantly.

Uncle John came from Vancouver to visit this past weekend, to play with the boys and meet his fourth nephew/godson (and final nephew/godson, unless he has some alternate Godson Supplier lined up). We talked about this whole experience, about what it was like to see this baby in the flesh and to hold and kiss him, about how support can take shape in email and phone and blog comments even across the mountains, about faith and love. I cried little happy tears to see my brother-in-law with my boys and cried a little more when I said good-bye to him at the airport. It was a special visit. Thanks UJ ... and Michael too. We love you.


Sam and Uncle John
The boys and Uncle John on our schoolyard picnic.

"Aw look, I am so beautiful. How could you possibly stick that awful helmet on me?!"

Meaningful uncle-godson conversation about not manipulating the mother regarding the helmet thing.


Saturday, September 17, 2011

Hiking

Sam has had two hiking experiences so far as we introduce him to some of the things our family loves to do. For our first trip, we stayed close to home to soothe my mama fears and see how Sam managed. We spent two hours on Nose Hill Park, a 5-mile-square nature reserve five minutes from our house. It was a gorgeous day with the endless blue skies that Alberta is known for.

Sam seemed to do well being in the backpack and eventually I quit pausing us every three feet to check that he was breathing and his oxygen was on and he was not slouchy. Zachary was in heaven out there as he is our mountain-boy by nature. Daniel expressed his enjoyment of our hike with repetitive statements such as, "How long do we have to be out here?!" and "Are you trying to torture us?!" and "How far is the car?!" Jacob employed his charming strategy of falling to the ground as though wounded in battle and turning himself into moaning deadweight until he gets carried for a distance. While annoying, it does reassure me that my children are not *entirely* made up their outdoorsy-dad's DNA.


Chris carrying Samuel and oxygen tank. (I know. My husband is a total hottie.)
Chris carrying Samuel and oxygen tank and Jacob.
(If that is not a triumphantly devious look in Jacob's eyes, I don't know what is.)
Lunch break.
A little thumb is a tasty way to end a meal, even out here on Nose Hill.

Gorgeous day with my boys.

So buoyed were we by our hiking success that we decided to try a mountain hike the following weekend. We drove about forty minutes west, just this side of Banff National Park, to a hike I have done every summer, including pregnant and with littles, for ten years. Ahh, look how normal my new life with a family of six is!

It was cooler out there than in the city and we hadn't brought sweaters, so a brief discussion of weather provisions was had. Then I fed Sam in the front seat of the van. Then we put him into the backpack and he screamed. Then we put him into the front carrier but realized it was dangerous to hike when I couldn't see my feet over rocks and roots and bridges. And that falling would mean crushing him. Then we put him back in the backpack and he screamed. Please also imagine our varied interventions as the other boys used their "hiking sticks" as weapons and I contemplated whether Canmore or Calgary would be the hospital of choice if they impaled an eyeball.

Finally, I wandered over to the trailhead with Sam, trying to walk off some frustration, and was greeted by a large yellow sign that said, "BEAR IN AREA." I have hiked and camped around bears my whole life but ... not today, folks. I have to admit that all of this took the wind out of my sails more than I would have liked. I really wanted to prove - I am not sure to whom - that my family was "normal" again, that Sam was just part of us. He is no longer that little half-bald, chicken-legged, struggling-to-survive, tubed-up baby from the hospital. But I guess he's not totally mountain-ready either.

All was not lost though. We stopped to eat our picnic lunch and ended up finding a lovely little hike with groomed trails, that is, trails not likely to present multiple tripping hazards if I was to wear Sam in the front carrier. It wasn't so much a "hike" by our standards but it was pretty and we were surrounded by mountains and nature and an incredible number of birds. And so I'll take it.

Yo yo. Just hikin' in the woods, homey.
 
Sam and me.  
 
My boys with Mount Yamnuska in the background. (We'll hike that one next year.)




Monday, September 12, 2011

The good news boy

Now that we've been home for more than two months, we are checking back in with the various departments that are following Samuel. Our primary clinic is the Diaphragmatic Hernia clinic that is centred in Respirology. Our monthly visits include a nurse, respirologist, pediatrician, surgeon, dietician, respiratory therapist and occupational therapist. Last week we got to see our surgeon - the one who has followed our Sam since his diagnosis last August, who came to the hospital the night he was born, who held his wee organs in her hands and knit him a diaphragm, who continues to give us amazing care and compassion. It was great to see her again. In fact, I might have acted like Bono had walked into the room but I am not saying for sure because it is too embarrassing to have become a surgeon groupie.

Last Tuesday we were at the Children's Hospital for seven hours for ophthalmology clinic in the morning and respiratory clinic in the afternoon. Today we were there for five hours for head shape clinic and cardiology clinic. Here's a run-down on the good news:

Sam's eyes:
Samuel's vision was retested and he has made great strides since he was first assessed in June. Developmentally, he is doing well in recovering from those months when he couldn't really use his vision and had an onslaught of nasty drugs to process. As well, Sam doesn't appear to have any astigmatism (yet) that would affect his vision beyond the ocular albinism. Yay!

Sam's feeding:
The dietician and I reviewed Samuel's progress with bottle feeding and the issues of increased reflux with the NG tube in. The result is a plan for weaning - and hopefully eliminating - his tube feeds. He takes all his food by mouth and we are concentrating his formula to provide extra calories with the same volume. He is also starting solids very slowly.

This is a big deal for a baby who grew his digestive organs in his chest, had three queries of bowel necrosis in the PICU, and could have had oral aversion from his two-plus months of intubation. Not long ago, I was touching his lips with various textures to get him used to stimulation around his mouth, helping him learn not to keep his tongue pressed against the roof of his mouth, and celebrating him being able to keep a half an ounce of tube-fed formula in his belly. Now this.

Sam's oxygen:
Samuel continues on a quarter-litre of oxygen but with daily "sprints" where he is on room air for increasing amounts of time. The goal is to get him off oxygen during the day and have him hooked up only at night. The morning following this fabulous news, I took my kids to school without having to hook Sam up to his portable oxygen tank and lug it with me. It is amazing how I am suddenly annoyed by the machine and the 50 feet of tubing now that I can see an end to this. Before now, it was just as it had to be and didn't bother me at all.

Sam's head:
I'm not gonna lie. The whole helmet thing kind of sucks rocks. I know we will get used to it and it's small potatoes in the big picture. But he hates it and it looks uncomfortable. And when I hold him I no longer get his little soft cheek and yummy neck to nuzzle; I get a hunk of clear co-polymer plastic.

Samuel looks pretty good from face-on, which is the most important thing. But his head remains pointed up behind his right ear and slightly pushed out above one eyebrow. This cranial plaigiocephaly is a result of his laying on his back, often in one position, for all those early weeks. For the first month, he could only lay on his left side because otherwise, his digestive organs slid into his only decent lung. Even after surgery, he was intubated for another six weeks so that it remained difficult to move him. The positioning of the endotracheal tube was the priority. By the time he was extubated, he'd developed some preference for facing left, likely because the ventilator, window, and his mama were always on that side.

I worked diligently after that, putting his head on the pointy parts and stuffing little blankets in around him so that he had to stay that way. And it improved - but not enough. So we have a swanky, costly cranial orthotic to try to remold his head shape while his skull is still maleable. He will wear this 23 hours a day for several months. And someday he'd better want to shave his head and get a big old tatoo back there or something to show off our work. (I hope I'm not sorry I said that.)

Sam's heart:
Cardiology clinic started with an echocardiogram and an ECG. Samuel's heart functions were absolutely normal with no apparent pulmonary hypertension. This is honestly an amazing miracle. His heart was squished up into the right corner of his chest by digestive organs. It was made to function extra hard by pumping to so little lung. It was believed he would always have some pulmonary hypertension because of the early and intense impact on his cardio-pulmonary development.

Our Cardiologist was impressed and delighted. He has followed Samuel since he was hours old in the NICU and has offered us gentle reassurance on many occasions. He remarked to me today that Samuel was a very sick baby and they weren't so sure he was going to stick around. There was sweetness when he examined him and listened to his superstar heart and lungs. Samuel's last drug for cardiopulmonary functioning was stopped; we are down to Zantac and iron.

I couldn't help but think of my grandmother who died last October. A few days after she died, Samuel had a fetal echocardiogram. Here is an excerpt from the blog entry about that day.

I laid still and quiet for nearly an hour while a specially trained sonographer did a very detailed ultrasound of our baby's heart. I feared that we would find something terribly wrong, at which point he would likely be considered palliative at birth. Then I felt my Gramma there in the dimly-lit little room with us and I sensed her telling me, "his heart is strong... his heart is strong." I felt her with us for about 20 minutes and was deeply comforted to think that she was watching over our baby. When the sonographer left the room, Chris leaned over and said, "your Gramma was here. She said the baby's heart is strong." I said, "I know." The Cardiologist came in a few minutes later, having reviewed the films from the echocardiogram. She told us that the baby's heart was strong, squished over to the right side of the chest, yes, but structurally and functionally perfect.

Thank you, Gramma, for blessing our Samuel Meir.


Talkin' up a storm.

Sam's new tricks include more upright play in his new activity centre (thanks Cindy!), scootching around on his back by digging in his heels and pushing off, and getting his own soother in his mouth. Awesome. New tricks also include trying to suck his thumb while soother is in, then wigging out because thumb is inextricably embedded inside soother, and having a 4.2 second transition time from sleeping soundly to screaming like a limb has been severed. Slightly less awesome. And yet, somehow, still entirely awesome.


Playin'.

 
Chillin'.