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.