Sunday, August 28, 2011

Reflecting

One year ago, on August 24, 2010, the words "Congenital Diaphragmatic Hernia" were introduced into our vocabulary. I remember the big, dimly-lit ultrasound room and our nurse and sonographer standing nearby and the kind eyes and voice of our perinatologist. I remember not crying but floating and spinning. I remember seeing our baby on the grainy black-and-white screen and hearing that he was very seriously ill. And our small world tilted a little.

Last week, Sam and I stopped by the Maternal Fetal Medicine centre to visit, back to the place where that diagnosis was made and where I had all those many ultrasounds, where I had an amniocentesis and a fetal echocardiogram. This is where I came for consultations with perinatologists and a neonatologist and our surgeon and where my polyhydramnios was monitored. Visiting there with my son was amazing. I saw Del who was there at the beginning and Roberta who loved me up right to the end and I left my blessings for Alison and Korinna and Kathy and Dr. Pollard.

Dr. Simrose came out and we both just started crying. I told her I remembered the day I asked her if we could donate our baby's organs if he died so that he would be meaningful to someone other than us. And she had said no but she also said that he was already meaningful and would be in ways we might not know for a long time. She remembered too and then she leaned in to our six month old Samuel and said, "and now you need those organs for a long life." It was beautiful.

I was happy to be back there with my amazing baby, to introduce him to these people who helped care for us when Samuel was still safe in my belly. At the same time, I knew that many of those couples in the waiting room were having the kind of dark emotions that we had in that place, and that these people who came out to celebrate Samuel with me for a few moments continue to have those painful meetings with other parents every day. I hope that Sam brought them a little light and hope because they made such a difference to us through their compassion-filled and difficult work.

What a difference a year makes. I thought of this on Friday as we celebrated Daniel's 9th birthday (the last of our four summer birthdays - whew!). It was easy and fun hosting his little friends for several hours. Last year, we took eight kids to Calaway Park in the 30-plus heat while I was pregnant and puking and newly terrified for my baby. Less fun. Our life now resembles our life then but is not the same. Chris and I are different, forever changed. Our kids are bigger and smarter in all the ways they would be with the passing of a year but are also wiser in other ways too.

And, of course, now there is this tiny person living in our house who is all, "hey feed me, hey play with me, hey change my bum, hey oxygenate me." He is the primary culprit behind all this new knowing and being.


Just had a bath and feeling a little resistant to the new prongs going on.


Things are good and we are grateful and relieved. I recently wrote that "I am full of happy" and this is true. However, I could have written "I am full of crazy" and this would also be true. I have lost it a few times and I want to admit it so that other mums bringing their babies home from the hospital don't think it's all sunshine and roses. Don't ask my husband about this because he will only make a traumatized face and then walk away stoop-shouldered. Poor man. 

I am so committed to being thankful for our blessings that I have not wanted to feel sad and anxious, like somehow that is a betrayal of my gratitude and happiness. However, those other feelings come up and bite me in the butt when I'm not looking. Sometimes I stumble upon a swell of grief or a sense that something bad is waiting to happen or an overwhelm that goes beyond the actual situation. I imagine that there is some built up stuff for me to sort through now, remnants of things I couldn't feel at the time because there was Just. No. Space.

And there is sadness still. I am sad that my baby sees so poorly. I can tell that I need only be about a foot away and I am totally gone to him. I sing and talk to him almost constantly so that he will know I am there. He can't process light well and he can't see things around him to make sense of his surroundings. I think it is part of why new situations are still a bit tiring for him. I know that it's workable, especially given what he's already come through, but I can't live the rest of his life thinking "oh well, at least he didn't die." So sometimes the sad shows up.

I am sad for my friend Arlene who is having to fight so hard against her cancer. I am sad for the people I lost while I was pregnant but couldn't properly say good-bye to - Gramma, my cousin Constance, my friend Gloria. I am sad for the other babies who didn't make it and sad for the suffering that I witnessed during our five months of hospital life. There was incredible beauty in that place but also incredible agony and some of that seeped into me.

I am sad because I know that this experience is but the tip of the iceburg, that mothers lose their babies all over the world every minute for reasons complex and ridiculous. The movie 'An Inconvenient Truth' says we must find the balance between denial and despair and I think that the past year has led me to scenes of life that are tipped toward despair. Some days I am aware that I am still getting my bearings.

I feel like I went on a really long trip. There were months backpacking through Hideous-Pregnancy-land with pre-natal appointments and death talk and physical complications. Then I spent months in Baby-Intensive-Care-land while recovering from a nasty case of post-partum fog. I actually lived there a long time, even though I showed up daily to feed and clothe my other children. I learned a different language and saw a lot of remarkable things and met truly amazing people. It was beautiful in its own way but I think I would rather not go back. Then they put me on the Recovering-baby-bus which is this excruciatingly long, winding way to get home and there were interesting experiences and lovely people but every day I thought, "Are we there yet?!"

And now I am back but the rest of the world went on while I was gone. Maybe I have a bit of reverse culture-shock like people describe when they go to Third World countries; they come home and everything is a bit too bright and the grocery store is totally over the top bizarre and First World stressors seem a little lame.

I am reverting to some normal now, even found myself getting frustrated with a dumb computer issue today. I'm finding some energy to reconnect with my friends in normal ways. Sort of. Conversation works best during those times when I am able to complete a sentence. I am planning to return to seeing some clients and I can see the runner in me showing up again. I laugh a little when I think of my initial declaration upon getting pregnant last summer, that I would be this healthy 40-something long-distance runner all through my pregnancy. Hmm. There were other plans for me!

School begins in just a few days and we will have new schedules to get used to. Samuel got a taste of being shuttled all over the place during our weeks of soccer camp and bike camp this summer. He did great and I actually managed to get them all and their gear out the door relatively on time. Now Sam and I are hanging out for a couple of days while Chris is camping with the big boys. Even if I had the wherewithal to go camping with my wee baby, I was too nervous about his oxygen and all those fires. So he will get a bath and extra mommy attention and we'll watch a chick flick tonight. Who knew only having one kid at a time was so easy?!

One of the things I know for sure from the past year: love is bigger than fear. Always. And so is relief bigger than overwhelm and gratitude bigger than sadness. Yes.


Corinne and Sam.

Sunday, August 21, 2011

A helping of grateful pie

I have hesitated to write this out even though it keeps writing itself in my head. I am not hesitant to say thank you to the people I am about to share with you - only hesitant to leave out all the amazing, generous, spirit-filled, helpful, loving others. There are too many of those to mention. I start to think about it - Kirsten and Susan who organized meals from work colleagues, Carissa who put together been-there-done-that gifts for our ICU life, Roshni who took over my preschool volunteer jobs and checked in with me nearly daily, Uncle John who was there for us both and who supported my stoic husband, Gary and Jennifer who could make me laugh when it didn't seem possible, Sandra for having Jakey over to play with Max sooo many times - and I just become overcome with the food, money, gifts, love love love that has come our way.

And I am not even including my parents here because I can't imagine what I could say for the love and help they have given and the way that our relationship has grown through all of this. And I am not writing here to Chris or my amazing, sensitive, loving, beyond beautiful big boys. So yes, this is a helping of grateful and not the whole pie. But I needed to write it for a some of the special people in Samuel's circle.

Alison. Thank you for your absolutely endless support in all those quiet, practical ways. Thank you for listening and for stepping in to take a load off of me where ever you could. Thank you for being the goddess-of-all-things-food for many months. Even when we said it was okay to stop, bits of baking kept showing up on our doorstep in containers that were by then very familiar to us. Thank you for taking my boys at the drop of a hat and being that soft-spoken, fun, comfortable presence they needed. You offered and offered and kept me in the loop of your availability and were just plain *there* whether it was convenient for you or not.

That day that we walked back to your house during preschool, ostensibly just for coffee, and I got to talk and cry and hear that whatever support I needed would be there with no limits... thank you. You really came through on that. I am in awe of your gentleness and generosity - and the sheer variety of your muffins.

My mamas... Maya, Sherri, Jessica, Melissa, Susan, Denice, Tricia, Annabelle, Jennifer, Liza, Andrea, Bridget, Maria. I have been with you nearly ten years in our online world of breastfeeding challenges turned all things parenting turned all things life and love. Thank you for giving me the permission to not breastfeed Samuel. I don't know any women who have worked harder to breastfeed than the lot of us. But I couldn't have pumped around the clock with three other kids for a baby who I thought would die. I would have made myself nutty and depressed if not for your stern and loving wisdom.

At our gathering in November, you held your hands to my belly and blessed Samuel. It meant the world to me, filled me up like I can't explain. No one has taught me more about parenting than you mamas and I am grateful for you walking this walk with me. Thank you Susan for the quilt and the understanding talks. Thank you Denice for the shawl and goodies made of your hand and heart. Thank you all for the music and messages that you showered me with.

The day we found out how sick our baby would be, I emailed "hold me up, mamas" and within minutes you were emailing back. Thank you for being there when I couldn't talk and couldn't turn to anyone "in real life" because my real life felt really bad. Even when I couldn't talk, I could write, and so over and over again, you have been the ones to receive my most raw experiences and pre-processed processing, my unedited and often dark feelings. And you held me up. I love you.

Lori. Where would we even be without you, my friend and heart-sister? Thank you for the endless hours of listening, for crying with me and praying with me. Thank you for offering your nurse-self and for being a most amazing friend. Thank you for being there when Samuel was born (and thank you to your husband who came home early from work so that you could get to me). I will never forget your face on the other side of the glass praying with all you had for our baby as he entered this world. Thank you for staying with Chris and taking photos and just being there to hold us.

Thank you for the gifts that just kept coming. Thank you for the Bible and the day that you sat in the hospital cafeteria with me and held my hands. Thank you for applying your most incredible shopping expertise, sussing out the organic crib mattress and the perfect stroller and the diaper organizer and a bazillion other things. Thank you for the the super-amazing diaper bag and for convincing me that I deserved something beautiful.

Thank you for the meals that you brought and for being the organizer of meals from so many others. Thank you for connecting me to Kim and the other lovely women in your church group. Without ever meeting me, they blessed us with their faith, sent gifts and meals and money for our stroller, prayed and prayed and celebrated each of Samuel's steps. Amazing. And that happened because of your love.

Samuel and Aunty Lori.

Thank you for coming to the hospital when I was so tired and convincing me that it was okay to go home because you would stay with him. I remember realizing that you love our Samuel, really LOVE him, and that you love me, and that is a most beautiful thing. Your friendship has taught me things about love that I didn't know. There is no greater gift than that. Thank you, heart-sister. I love you.

Samuel, you have been born into love. We are blessed.

Thursday, August 11, 2011

An update

I think I mentioned in an earlier post that we are being followed by nine different clinics at the Children's Hospital - respiratory/diaphragm, cardiology, audiology, ophthalmology, surgery, plastics, hematology, genetics and head shape clinic. I can recite these like a truck stop waitress can recite the day's flavours of pie.

Last week, we had our first visit to Respiratory/Diaphragmatic Hernia Clinic. This was an all-day affair as I arrived early enough to get Samuel's blood work and chest x-ray done so that they would have the information in time for clinic. Samuel *screamed* when they took blood and he was pissed about being restrained for the x-ray too. This actually made me happy. Sam had dozens of x-rays and echocardiograms in hospital. And he had many, many hundreds of needles - 183 related to the blood clot treatment alone and at one point he was having blood taken hourly, then daily. Getting poked was so normal for him that he would only give this half-hearted, resigned fussy cry. I consider it awesome news that he is well enough to act like a normal baby who has lovely, well-meaning people doing obnoxious stuff to him.

Clinic itself was three hours - nurse, doctor, respiratory therapist, occupational therapist (for feeding), dietician, nurse and doctor again. The end result was two thumbs up for our Sam. His x-ray looked amazing with both lungs full size and he did so well with the oximetry that his oxygen was lowered from a half-litre to a quarter-litre. (Oximetry is where they hook him up to an oxygen saturation monitor and evaluate his sats. He satted 100% at his regular half-litre, so they checked him on less oxygen and found the place where his sats dropped. He continued satting 100% at a quarter-litre and so that is where he'll stay for now.)

Sam also showed off his eating skills by downing his entire six ounce bottle for the occupational therapist and dietician. He doesn't do this at every feed so he still needs the NG tube for top-ups. But it was not so long ago that a half-ounce by mouth was a huge event for Samuel. We are amazed by how quickly he is getting stronger and catching up. He is much more relaxed these days - no more furrowed brow and his hands are relaxing and stretching out of their gibbly-fingered position - and is happy and interactive.


"Them lab tech blood-taking people better watch out for me.
My mum taught me how to give the finger, you know."
Look what a respectful mother I am, covering him in wee towels before I take a photo of him
... in the bath ...to post on the internet. Heehee.

Sam is growing well. He is small and a bit behind developmentally for his six months of age. However, he is on the growth charts for both length and weight - hooray! There is no indication of any lasting developmental impact from Samuel's tough beginnings. His visual impairment is the only "forever" thing and that is unrelated to the diaphragmatic hernia and its treatment. He even has a head cold right now and seems not too much the worse for wear. Thankfully, I got it first so I knew it was not a big respiratory deal, otherwise there would have been much more anxiety to weather.

Things are a bit bananas here. Last week included the all-day Children's Hospital extravaganza on Tuesday, vaccinations for three out of four boys on Wednesday, birthday celebrations for Jacob on Thursday and Friday, and (finally) finishing my marking on the weekend. This in a house where someone needs something every second and the laundry alone could cause a woman to run screaming into the streets.

This week we had new windows put into our living room in the ongoing pursuit of a safer house for this baby's wee lungs. We had to replace the leaky windows before we could change out the 1971 avocado green carpets in there. There was a visit from Home Care and I managed an outing to a park and for lunch on my own with all four boys. And I was at the Children's Hospital again for head shape clinic (yes, Samuel is getting a funky clear-plastic helmet). Today I see my parents off to London, England on their dream trip that hopefully will not include them being attacked and killed by rioters. Apparently, there is no such thing as last-minute daughterly veto powers on parental vacations. I checked.

And yet, one of my best friends just accused me of being a Ned Flanders (from the Simpson's), one of those people who is just cheerfully happy with whatever gets tossed their way. I kind of don't think that's actually true. But... okily-dokily. I'll take it.


Brother Dan and I, we like each other a lot.

Sam has some things to say to his grandparents. I think they include, "Are you flipping KIDDING ME?! You are going to London where they are rioting and looting and setting fires?! For the love of Maude!!!"

Yea, just don't go thinking it was easy getting a pic of them all together looking this sweet.

Wednesday, August 10, 2011

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 it." 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

Monday, August 8, 2011

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 heart broken 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.

Wednesday, August 3, 2011

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 bear 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.