It's been a month since I updated the blog, partly just no time and partly I didn't know if anyone still wanted to read now that Sam was home. But several people have asked me for more stories and photos so here I am. Get comfy as this may be a long one.
We have been home a month and it has been a steep learning curve. Home oxygen has been my nemesis, my kryptonite of sorts. The first time out with Samuel, I ran out of oxygen (but fortunately was at the Children's Hospital picking up a prescription and oxygen abounds there). The second time out with him, I made sure I hooked him up and had a full tank. I was very pleased with myself to have gone for a walk, picked up some groceries and made it home before we got rained on. Yay me! Except I forgot to turn the oxygen tank on.
Then I went to a pediatrician appointment unable to get the regulator on the new tank so I spent 15 minutes fumbling with it in the waiting room with my baby not on oxygen at all. No one appeared to be making a furtive cell phone call to Child Welfare. Most recently, the home care team found that one of the valves on our home oxygen converter was leaking. Samuel had likely been getting very little oxygen for several days at that point which explained his being a little crankier and less vigorous in his eating.
I think I finally have the whole oxygen thing down pat now. And the meds. And the sleep schedule. And the feeding routine. And the NG tube changes. And the supplies ordering. And the physiotherapy. And the getting to multiple appointments. And the juggling four boys... well, this last one is still really a work in progress.
Being home is lovely. Truly. Having my whole family under one roof is busy in all the "normal" ways and I am happy and grateful. In some ways, it's like our hospital life never happened. Yet I experienced a sense of loss when we left that place after five months. They were our family and our second home, the "other" people who loved our Sam. I missed the people who helped me care for him and the constant sense of not being alone with his care and growth. The first couple of weeks at home, I had that vaguely panicky "no one is here to help me if I screw this up" feeling a good lot of the time. That is fading as my confidence grows.
Now it is time to re-create our non-hospital world. For so long, I have been filled up with the emotional, physical, practical impact of living deep inside this experience. I've lost a bit of my ability to have a normal conversation or to connect with people in regular ways. Teaching my university course was a great experience that way; we had the face-to-face component of the online course during the first week of July. For a few hours each day, I got to rediscover my professional self and - lo and behold - I still have a brain and some clinical skills. I am even starting to think about returning to client work very part-time in the fall.
Enough about me... here are some things about our six month old Sam.
His new tricks include grasping objects to put them into his mouth, rolling over both ways, and supporting himself in tummy time. He is tracking much better with his eyes and experimenting with a lot of new vocalizations. He laughs now but doesn't quite make noise when he does it. I can't explain this since I know you are probably thinking it's not really a laugh if there's no noise. But it's like everything is there except the sound, which you can almost hear locked just inside.
Sam with his lovey and wearing his hand splints. |
He is also fascinated with his own fingers. He folds them together and flies them apart and puts them in his mouth. This is all normal baby activity, if I remember correctly, but there is something unique about the way that Samuel does it. Maybe it is just our extra appreciation for his little developmental steps. But there is this look in his eyes as he gazes at his own fingers and I can't help but wonder if there is some hallucinogenic after-effect of the ketamine and methadone he was on; maybe he actually sees brilliantly coloured beams of light flying from his fingers!
He has had some early lessons in cause and effect. For instance, 'if I grin at grown-ups, they become louder and sillier.' Also, 'if I cry instead of going to sleep independently in my crib, someone will pick me up and snuggle and rock me.' And then there is, 'if I put these psychedelic fingers of mine into my mouth and bite down, it hurts.' This last one took a few trials where he bit his own hands and then cried and looked accusingly at me. I gave him a speech about personal responsibility and he seems to be biting himself less these days.
His hair is finally growing in. However, it is growing in a different colour than the hair that grew in utero. So he has lovely dark auburn hair on the back of his head and fair strawberry blond hair on the top and in the recently-bald patches behind his ears. This does not actually camoflage the NICU haircut one bit. Hence, the hat.
Hair slowly recovering from NICU life. |
This hat was $6.95 worth of happy for me. I also bought it in blue. |
Samuel's first days home were a big adjustment for him and I could see him being easily overstimulated. We did our best to have him only in a few rooms, to have some semblance of quiet and order (ha ha), and to not have a bunch of people visiting or touching him. Even taking him outside seemed to freak him out a little as he's not had a lot of experience with sunlight and wind on his face.
He is now totally comfortable at home and handles the noise and, um, "affection" of his brothers. He still becomes overstimulated with a lot of attention from new people (although he is up for visitors!) or if we are in new environments. One day shopping at Toys 'R' Us for Zachary's birthday present, he did his wailing and going all rigid. I ended up giving him his soother and putting a blanket over his car seat. I could see him exhale with relief and he remained content in there until we could leave.
Samuel gets a lot of attention. Jakey once had me believing that he was against all things Samuel. But he kisses his little brother a hundred times a day and hangs out with him. He ADORES that baby. Or else he has learned that he is more likely to get the opportunity to squish him to death if he pretends that he adores that baby. Zachary and Daniel are both very sweet with him and even helpful. Daniel changed a diaper recently, which incited an expression somewhere between pride and revulsion.
Samuel likes to have someone with him at all times so he makes his ay-yi-yi-yiiiii call and one of the brothers will usually leap into baby entertainer mode. The boys also are impressed by Samuel's mad skillz (I know, I'm so cool) when it comes to burping. Sam should be belching the alphabet like a frat boy by the time he's in preschool.
Downward-facing-dog with baby smooches. Yes, I do see the danger in this. |
Awww Mom. Why can't Sam be part of our totem pole?! |
Um, yea. That's why. |
Brotherly love. Really. |
People are always trying to figure out who Samuel looks like. In the beginning, he looked like so much like Zachary that it was fairly easy but he's looking more and more like himself and baffling us a bit more. One day, we were snuggling while he did tummy time on my belly and I finally saw it. The resemblance was startling. He looks just like Don Rickles! Now I don't even know Don Rickles, nevermind "KNOW-wink-wink" Don Rickles, so I realize they can't actually be related. And one friend, unimpressed by my insight, pointed out that all babies look like Don Rickles. Still. It's unsettling.
I am full of happy. Sure, it's busy and Chris and I are really, really stupid-tired pretty much all of the time. In addition to four boys, including a baby with Samuel's extra needs, July has included nine medical appointments, soccer camp for all three big boys, teaching and marking, and birthday celebrations for Chris, Zachary, and my dad. We've been doing this adjusting thing and wanting to finally feel like a family of six all together and giving the big boys their own time and also trying to have a summer. I am learning to show myself some gentleness when I just can't keep up.
Six months ago my water broke and we went to the hospital for the scary, love-filled, anguishing day that our Samuel was born. Six months ago I felt the most profound grief and fear I have ever known and I lived in that for weeks and weeks until we could see that he was healing and would come home to us. Six months ago I didn't know the magic and brilliance and desperate sorrow and love and beauty inside the walls of the Alberta Children's Hospital. Six months ago I liked the idea of miracles but I had never seen or felt or touched one. Or, if I did, I missed it and hope I won't let that happen ever again.
Ay-yi-yi-yi-yiiii. Brothers come play with me.
|
Super Sam. Six months old. |
and keep the stories coming!!!
ReplyDeleteWe think that Samuel looks more like Winston Churchill than Don Rickles, or is Zachary still a contender for the "look-a-like" contest? either way...Samuel looks lovely being at home with his brothers, mom and dad.
Oh!! and when Samuel isn't getting the oxygen on time . . . and seems to be happy . . . take it as a good sign and breathe (phew! to yourself)
Love tons . . . UJ and Michael
Of course we still want updates! I am always energized by Sam's success! Sending love....
ReplyDeleteCarissa and fam.
Wow Corinne - you are an amazing person! Not only are you stretched in all directions a la Silly Putty, but you take the time to think of the rest of us and keep us updated on the ins and outs of your life. I knew you were a special person when I first met you several years ago.
ReplyDeleteL
"YAAAY" Sweetie and All the Austins. Especially the "Newbie" I too am one of them "whiners" that felt the deprivation of your Magnifque survival skills. I understand that mountaineers, Tour de France, Ironman et al practice oxygen management exercises but I had no idea that the regimen could start so early. This will facilitate "Totem" building LATER. My muddy ol eyes see the vestiges of chocolate cake in the lovey photo.
ReplyDeleteMay St Patrick continue to bless you as he has me, that we may share the cake on your 5th. Your OLDEST cheer leader
Uncle O,F.
Happy sixth month birthday! This is an incredible milestone that needs to be definitely written about! Samuel was born into a deeply loving, caring, and immensely powerful family. Samuel is where he needs to be. He is blessed, as much as you feel blessed by having him. I am eager to meet him one day. I am all for you keeping your blog alive - please!
ReplyDeleteSmiling big,
Dawn
Happy Half-Birthday, beautiful boy! And happy half a year of wonderful miracles to his beautiful mama and all her men! I have gotten caught up to date on all of Sam's news, I live for these pictures and I am glad to know you are all well. I haven't gotten around to reply to your e-mail, terrible I know, but I showed off the picture of me and Sam to anyone who would view it...been going through some good busy myself (new responsibilities at work, new house!) but rest assured I do think of you guys often, daily really as I see Sam's blog bookmarked in my browser when I am web-surfing... ;)
ReplyDeleteYour beautiful writing makes me laugh right from my belly, and warms my heart, and I am so glad to know about Sam's exploits. Miss you guys tons!
BIG HUGS!
And hey, doing well with sneakishly turned off O2 means.....self-weaning! That's good right? ;)
Love,
Megan W-G
It is a privilege and thrill to read about your journey over the past 6 months. What touches me most is how much love glows from each page. After seeing what Samuel has been through, and glimpsing at everything the family has endured, I,too, know he will be just fine, and you will be an even stronger unit together. Happy half birthday to you all! Looking forward to meeting him in person one day. Thank you for sharing your story, it is truly a story of love, Fondly, Cathy H
ReplyDeleteThanks for posting, Corinne. And Happy B-Day Sam!
ReplyDeleteKirsten