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 and godson conversation about not manipulating the mother regarding the helmet thing.



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.)



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 malleable. 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'.



SEVEN MONTHS OLD!

Well, our Samuel is now seven months old, on the brink of getting his new funky "I have a wonky skull" helmet and heading into fall. In addition to back-to-school adjustments, we have lots of appointments in the next couple of weeks: head shape clinic times four (regarding aforementioned helmet), ophthalmology (at last getting more info and hopefully help for his vision), respiratory/diaphragmatic hernia clinic, and cardiology clinic.

My favourite appointments are the home care team that comes to our house - the nurse, respiratory therapist and sometimes physiotherapist who check his weight and his oxygen and offer me extra guidance on his development. They appear to adore him and this is so comforting and lovely for me. They are like my hospital people away from the hospital, my "you are not left totally alone with caring for him" and "we will celebrate with you as he gets better" folks.

And Samuel does continue to get better! Here are some of his new tricks:

He can do that sitting thing where I pull him up and position him in a sit and then back away just a few inches so I can catch him when he does the slow topple. Heehee.

He is teething and has gained the ability to push many fingers into his mouth all at one time, because apparently plain old single-thumb sucking is not good enough for this boy.

He doubled his birth weight of 6 pounds 8 ounces, which would be exactly on track for his adjusted age of 6 months. He is over 13 pounds and is 26 inches long.

He's started making noise when he laughs. And there might be just a few people around here who will do any manner of ridiculous things to inspire said laughter. The new noise is part of an overall scrunching up his hands and pulling his neck into his body and smiling with his whole face and opening his mouth really wide. And then the noise that comes out is kind of like this:

"heh"

Then when he's really worked up, like so full of mirth that he can't stand it, he sounds like this:

"rrrrr [throaty growl] heh"

Post-bath giggling.

He is starting to transition out of needing his NG tube. He has it in less than half of the time now. Otherwise, he takes his meds orally and takes all of his calories by bottle. I put the NG back in after a few days when he seems to be tiring out and he gets some top-ups for a few feeds, then we take it out again.

I am delighted to think we may not need the NG at all someday soon. I don't love seeing the tube sticking out of his nose and the tape on his face. He is more likely to gag and reflux when it's in. (Which is maybe why he took to pulling it out himself - which is how we discovered that he didn't really need it ALL the time.) And every so often there is a defective tube where the little cap on the end doesn't close properly but you don't know until it's already in his belly and who wants to start that over again unnecessarily?! So we live with it but a simple cough can force partially digested food up through his tube where it leaks all over until we notice. Sam can actually throw up on us surreptitiously! While I appreciate the efficiency of this method and the lesson in a new form of incontinence, it is gross.

He is starting to be more interactive with his brothers and they are finding new and somewhat questionable ways to play with him. A case in point, the baby blanket fort.


My baby in the fort. Underneath the blankets and pillows. Um, yea.



Before you go dialing Child Protective Services, he's actually safe in there.

And even happy. (And well-supervised by grown-ups. Really.)

Other forms of entertainment include reading books, playing with toys, and experimenting with new configurations for his nasal prongs.


Daniel has taken on reading to Sam as his big brother task. Which is lovely.

 

Jakey enjoys arranging and offering toys for Sam. I am not sure Sam also enjoys it. But maybe.

He seems very pleased with his new oxygenated eyeballs.
(And whoa! Look at that hair sticking up!)

There is an ongoing evolution of nicknames, including Samalama-ding-dong (fun), Samarai (warrior reference), Samsonite (toughness reference), Salmon (swimming upstream towards goal but notably omitted breeding reference), Noonch-ka (I have no idea), and Schniggernin (whuck?!).

Chris took the big boys camping so I got to have a date where it was just Sam and I for 48 hours. The first night I posted my reflections here and felt rather self-indulgent for doing so. But within an hour I felt this sense of release, like I had let a piece of the yuckies go. Sam and I settled down to watch The Joy Luck Club and cuddle. At one point he was falling asleep and I went to put him in his bed. But then I wrapped him up in my arms and put a blanket all around us and turned off the movie. And I watched him fall asleep snuggled close into my body, felt him go all heavy and soft as he slept. And it was the very best feeling ever.

Blissin' out with Sam.