Sam's Video. Birth to six months.

I've been "processing" lately, trying to make some meaning out of what the heck just happened to our lives in the last year or so. One result of that has been this video. I wanted to put together some of the pictures and our key moments into a 'snapshot' of our journey. In particular, I hope it could offer hope to other CDH parents still in the belly of this beast. I remember looking to blogs for information and being completely overwhelmed but I found this one blog with a video like this one, where I got to see - with only five minutes and minimal cognitive abilities required - that things could look just as bleak as they did for us and there was a happy ending.

The music here is important. Baby Mine is the lullaby that I sing to my boys. I sang this song to Samuel when he was safe in my belly. I sang it to myself in the delivery room when I needed some soothing of my own. I sang it to Samuel throughout his rough days and all my kids still request it when they can't sleep. I have made up some different words that are just for my boys but I thought you would appreciate the Bette Midler version more than my lame-o singing.

What a Wonderful World - the original Louis Armstrong version - was one of my Grandma's favourite songs and it was sung at her funeral last October. Before she died, we told her that our baby was being named for her (Meira, the feminine of Meir, means Margaret and Helen in Hebrew and so is to honour both of my grandmothers). We also told her that the baby was really sick and she said only, "God will take care of things." Chris and I both felt her presence at the fetal echocardiogram shortly after she died and I've often remembered her message there, that Samuel's heart was perfect. Her faith and strength have been a quiet companion to me through this journey. And really, the words of this song kind of say it all.

Hope you like this glimpse into Sam's beginnings.

Love,
Corinne

Wings

In less than two weeks, five babies have died in my small online community of Congenital Diaphragmatic Hernia families. They have, as we say at Cherubs, grown their wings. Two of these babies died at birth, including one who was expected to do very well, who had all the "good" numbers that our Samuel didn't have. Two others died at just a few weeks old. Yet another brave boy lived for 11 months. I don't know what their parents feel - I couldn't possibly. I can only imagine it, having come closer to it than any mama ever wishes to.

These things affect me in ways they didn't used to - but then it was only a year ago that I had never heard of a Congenital Diaphragmatic Hernia. And I couldn't read CDH blogs for a long time unless someone else screened them to make sure there was a happy ending. But I am coming over to the other side where I can take in the bigger picture and maybe even be a support to others. So I belong to the group and I read their stories. And I let myself hear and share and hope and pray. And sometimes things just don't turn out so well.

I'm feeling so heartbroken for these families and so grateful for my Samuel. I needed to let those of you who have rallied and prayed for him know that there are other babies with CDH, other babies with other people rallying and praying for them, who fly home too soon. Blessings on their wee heads.

SIX MONTHS OLD!

Happy half-birthday to our Samuel!! No, I did not feed him cake.

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.

It probably doesn't require mentioning that Chris and I are wrapped around Sam's little crooked double-jointed fingers. I am aware of sometimes needing to calm myself so that I don't smoosh him or gobble him. The other day I caught myself gritting my teeth and kissing him and declaring in a voice-not-really-my-own that I was gonna make me some Strawberry Sam and spread him on an english muffin. Enough is enough. My children should not have to witness this side of their mother. (Okay, who am I kidding?! This is not new behaviour for me.)

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.

Apparently playing with Sam exhausts even the almost-five year old crowd.



Super Sam. Six months old.