Tuesday, June 21, 2011

Happy Father's Day

Well, it was Father's Day and we had our Samuel home for pretty much the whole day. My mom and I made biscuits and gravy and bacon - a heart-destroying throwback to old fashioned farm brunches. It's my dad's favourite and I thought there should be a little something to remind him of his mom on his first father's day without her. We had brunch together while the dads took a really brief break from building the trampoline.
Chris and Dad building the trampoline. Notice the rain drops on the deck. Notice the exertion on their faces. Notice the absence of the instruction booklet.
Certainly, one might think that Samuel would be enough of a miracle for one family. But no. Here is my dad... wait for it... reading the instruction manual. Be still my heart.
Isn't Father's Day all about working your arse off to make your kids really, really happy?! It isn't?! Oh.
And now for a little letter-writing to the honoured dads.

To Dad, Love Samuel
Dear Daddy,
Mommy said she couldn’t write this blog entry because it would just make her bawl so I am writing it for her. I'm happy to do it since it's pretty clear to me already that you are a great dad. When you first found out I was on the way, Mum was scared and you were all kid-on-Christmas stupid-happy. When you found out that I was going to be really really sick, you were the one who had faith that it would be okay. When the doctors gave little hope and Mum couldn’t bear to hope and being the person with hope seemed just a little foolish, you had hope.
When Mum had polyhydramnios and a separated symphisis pubis and couldn’t walk and could hardly get out of bed, you cooked and took care of my brothers and sometimes came home early even though work was really crazy busy too. Yea, you lose your keys and your glasses and your cell phone a lot. Okay, every day. But you don’t lose your temper much. And you don’t lose hope.
Mum likes to pretend that she’s the one holding it all together. But I know – and she knows it too – that a really big part of why we’re all okay is because of your absolutely boundless dedication to your family. Mum believed you when you promised that you would take care of us. During the most difficult days, she rode on your faith and energy. Thank you for that.
Thank you for playing with my brothers so that Mommy could be with me. Thank you for understanding that I knew her smell and her heartbeat and her voice and making sure that I could have her near me. Thank you for making sure that I got some of you as well. I will never forget the way you sang to me and read The Snail and the Whale to me every single day. I will never forget when you finally got to hold me. I don’t think the ICU folk will forget it either since it’s not so often you see a father so openly express that most incredible gratitude and love and wonder.
I know how lucky I am. Mommy tells me all the time when you aren’t listening. I know you will love me well through whatever life I am here to live. I know you will teach me about woodworking and god and expressing feelings and building a campfire and being a man. A really good man. And since it looks like I’m going to get to stick around and grow up, I intend to teach you some things too.
Speaking of teaching you some things, um, sorry about scaring you so badly. I am sure I turned grey those last four brown hairs on your head. I know that you watched me born and intubated. I know you kissed me as they took me to the NICU and that you said good-bye when I was taken off to surgery and worried that was the end. I know that you followed whatever information you could all along in case there was something you could fix for me. I know how much you wanted me and how much you love me. I know that all those questions you asked the doctors and nurses and respiratory therapists were really the same question; “is my son going to be okay?”
I’m going to be okay. Happy Father’s Day. Thanks for being my dad.
Love
Samuel
Samuel, a few minutes old and newly intubated, with his Daddy.
Samuel, 3 months old and outside for the first time.
Samuel, four months old, on a home pass and hanging with daddy.

To Dad, Love Corinne
Dear Daddy,
Happy Father’s Day. You know that picture frame I gave you, the one that says, “If you don’t believe in super heroes, you haven’t met my Grandpa.” You are my super hero, Dad. You always have been. I have a few other super heroes now by the names Chris, Daniel, Zachary, Jacob and Samuel. But you are my first super hero and that’s forever.
Thank you for standing behind us through all this, even foregoing your winter in Arizona. I know you worried that something would happen to your baby just as I worried that something would happen to my baby. I know you don’t really talk about your feelings. (Hey you people out there who just coughed “understatement” into your hands, cut that out.) But you express your love in a million ways in the things you do for us. I get it.
Thanks for doing our dishes so I that I get to come home to a clean kitchen. Thanks for making my kids Boppa Grilled Cheese. I have no idea what it is about your grilled cheese but I guess super heroes have those kinds of secret powers. Thanks for fixing miscellaneous things around here, some of which we are too busy to even notice need fixing. Thanks for the Costco care packages and various other ways you think of to help. Thanks for changing our burnt out light bulbs. Who knew that Chris and I had such an issue with changing light bulbs?! You know that joke, “How many therapists does it take to change a light bulb? Only one but first the bulb has to really, really want to change.” I guess it’s not such a joke!
And thanks for a whole whack of other things that are too numerous to mention. Most recently, thanks for spending Father’s Day in our backyard sweating and getting rained on and being bitten by mosquitoes so that my boys could have a really cool, really safe, really fun trampoline and I could have a way to keep them entertained this summer while I’m looking after Samuel.
Oh, and thanks for adoring our newest super hero. I see it in your eyes. I love you, Dad.
Love
Cor
Samuel, one month old, with his grandparents.

Samuel, four months old, with Boppa.

Monday, June 20, 2011

A feel good kind of day

Some good news came our way today!

Samuel had the repeat of his audiology exam this morning first thing. When this test was first done in May, it showed that Samuel's right ear had mild to moderate hearing loss and that the left one was worse. The readings at that test were not very clear and the audiologist was not aware that Samuel spent his first two months intubated, heavily sedated, and on minimal stimulation. It was recommended that we repeat the test once he'd had a chance to catch up developmentally. So this morning Samuel made it through the re-test of his right ear and everything came back normal. Woo hoo! He can hear in at least one of them cute little ears! 

I went back to the unit, picked up Jakey from the play room, fed Samuel again, met with the respirology resident, the occupational therapist, and the pediatrician. I went downstairs to get some lunch for Jacob and I, then dashed off to take Jacob to June Bugs (his week long summer camp), and then went back to the hospital to wait for the ultrasound department to call us down. Today was the day for imaging the blood clot that Samuel developed in his femoral artery back in March.

I watched his nurse give him the injection of his anti-coagulant this morning - his 188th one - and said a little prayer that it would be his last. All through the ultrasound, I kept trying to see something that would tell me it was okay. I'd talked myself into not knowing until tomorrow given that it was already late afternoon. But then there was our hematologist and she was all smiles. The blood clot was resolved enough that they could stop the twice daily injections of blood thinners. No more pokes for my wee babe!

Tomorrow Samuel has an echocardiogram as cardiology moved the test up to make sure we have time to tweak medications before going home. There will be meetings with occupational therapy and physiotherapy and the home care nurse to make sure we have a plan. Samuel has an appointment with opthamology on Thursday to figure out what's up with his wonky eyes and then audiology on Friday to test his left ear. This weekend they will do an oxygen test to show that he does require home oxygen. We will also do an overnight home pass to make sure that I can handle all his feeds and meds.

I am so ready to bring my baby home. Leaving him tonight was one of the hardest in a long while. He was sweetly playing in his crib, batting and kicking the toys overhead and making his new little cooing sounds. His hair was sticking up all blond and fuzzy on top and he was just my sweet, well little man. I am tired of saying goodbye to him and trusting his care to these amazing, lovely people who are not his mama. I told the nurse this and she said that means it's time. It's time to move on from the hospital life that has been my baby's blessed beginning. It's time to have our family together. It's time to go home.

Friday, June 17, 2011

Musings

Well, we have a tentative discharge date for Samuel to come home to us. I can't tell you when it is because I am too superstitious. But it is soon. Before he turns five months. But not much before. Sorry, can't type the date.

It will be amazing to have him home, to have all my children under one roof, to cuddle him in our own room, to not drive back and forth to the hospital every day, sometimes three times a day depending on child care and school stuff and such. I am excited, happy, relieved, grateful. All of that. So so so much. I am also - please excuse the psychological jargon here - Freaking Out. How on earth will I do this? I have already covertly tried to get the home phone numbers of some of my favourite nurses because really, they could probably stand to do some babysitting on the side, don't you think?!

So the next while brings us a battery of pre-discharge tests and preparation. Samuel has audiology and opthamology appointments and an echocardiogram and an ultrasound. The echo is the only one that might delay our discharge as there may be medication weans indicated that are best done in hospital. Otherwise, Samuel will be seen regularly in the the diaphragmatic hernia and respirology clinics as an outpatient and we have a pediatrician in the community who will follow us closely.

The ultrasound on Monday is to check on the blood clot he got in his femoral line. He has had subcutaneous injections of Enoxiparin (a blood thinner) twice a day for three months now. His teeny thighs have filled with pin-pricks and bruises and little cysts. I would so like for him to get to be done with that. And I would like to not have to keep poking my baby once we bring him home. So I have a few extra prayers right now that the blood clot is resolved.

There has also been the teaching - meds, NG feeding, physiotherapy, oxygen, etc. - that I've been receiving. At the time, I do these things and think, "Yea, I can do this. Stick a tube up his nose and into his stomach, hang his feed and calculate the drip and keep him upright for an hour so he doesn't reflux, flush NG and equipment, check stomach contents for tube positioning, push a med through his tube, hook up portable O2 and check the flow and then head out on the town. Add in some physiotherapy stretches for his core strength and development and some visual stimulation and some occupational therapy stuff for his gibbly hands. Badda-boom badda-bing."

Then I think about doing it at home with three other boys needing me and making dinner and entertaining kids through the summer. And doing it in the middle of the night instead of doing that other frivolous nighttime thing I try to do called sleeping. And doing it without a nurse standing nearby to help just in case. And I revert to Freaking Out. Then you may hear the sound of a wail echoing into the distance; that would be me falling down the Anxiety Rabbit Hole. What if Samuel gets a respiratory infection and dies or reherniates and needs more surgery or has a fluid imbalance that affects his heart function and makes him have a stroke or - my personal favourite - what if after all of that he's survived I drop him on his head?!

Do not fear. My rational mind seems to be able to take hold of my what-if mind to pull me back from the edge of the Rabbit Hole. Most of the time. So saner thoughts prevail, such as "this is one tough little dude" and "I have learned that I can handle things that I never thought I could handle" and "one foot in front of the other" and "be in this moment."  

Here are a couple of photos that I gaze at endlessly. We were changing his NG and nasal prongs and I got to see my baby's face free of all tubes and tape. Aside from the barely visible scar on his belly, there is nothing here to remind me of Samuel's struggles. (And isn't that scar amazing? Can you believe they got his digestive organs out of his chest and built him a diaphragm through that incision?!) There are times when I get to be in this magical well-baby place with my Samuel.


Samuel getting his hair brushed by nurse Jaclyn (to calm him because we just ripped tapes off of his face) and chilling without tubes.

A bit blurry but.... YUM!!! Don't think that I don't dive into that little neck and do some mama smoochin' on a regular basis.

Sometimes I re-read the pregnancy part of the blog. Although not in the best shape of my life (gah!), I am recovered physically and so I forget how hard it was to do simple things like reaching to get laundry out of the washer or walking (waddling) to the van. Sometimes I need to remind myself that it was real, that they all really predicted that he would die. Seven perinatologists (including a top one from Mt. Sinai in Toronto), a pediatric surgeon, three neonatologists, a respirologist... The only encouragement really was from my obstetricians and one of the nurses who were looking after me instead of focusing on baby. 

Every so often I think maybe I exagerrated or misunderstood or something because how could it be so different from what has happened?! Thank goodness for my friend Lori who came to some of those appointments and can say, "No, it was real. They were kind but they gave you virtually no hope." Nurses have commented on this one little outfit that Samuel has, how sweet it is. I don't tell them that it was the outfit he was meant to wear when he died, when we got to hold him and take pictures and then lay him to rest.

Someone asked me the other day if I was angry about all that and I said no. I don't even really think about it - no time to be looking backwards. Besides, one of those doctors is the neonatologist who saved Samuel's life in the NICU. He was there when Sam was born and I will never forget him saying, "We have life!" and proceding to intubate. Another was the surgeon who repaired Samuel's diagphragmatic hernia, who came to see us at the NICU when he was just a few hours old and who calls him her Sam. Those doctors gave us the best guidance they could with they information they had. Then they showed up and saved him and shared our journey and delighted in our love for him. 

Really, based on the medical information, Samuel shouldn't be here. But something happened between the time of that MRI and the time Samuel was born. Something happened to let him develop a functioning lung on the left side where his intestines, stomach, spleen and liver grew. Something happened to protect his squished up heart and his right lung so that he could use them to be the little eating, pooping, smiling, kicking, coming-home-from-the-hospital baby we have now. Science is amazing AND it is limited.

And from this place, I laugh in the face of Freaking Out. Ha! Begone, Freaking Out. There is no room for you here. I have my baby and my beautiful family of six. I practically float around that hospital some days. I carry my baby in the Bjorn with his oxygen tubes hanging down, pulling the big heavy tank behind us and I feel like the happiest, proudest mama in the world. I sit and hold him and smell his head and I cry for the grace that is there in my arms. More than ever before, I am awake to the pain and the beauty that is this world. I wouldn't give that up for anything.

Sleeping in his bassinet on Home Visit #3.
Heh heh. Brothers, you are funny!
Hanging with Jakey and showing of my fancy new thumb splints courtesy of OT.
Samuel's favourite toy, aka Alien Guy.

Tuesday, June 7, 2011

FOUR MONTHS OLD!

So our Samuel is four months old. To celebrate, he got his oxygen weaned to a half litre. (For reference, he was on eight litres when he first went from BiPAP to high flow on April 18th.) Three months ago, we still thought he might die. Two months ago, we weren't sure he would be able to manage extubation. One month ago, he had just come off high flow and moved out of ICU. Now here we are with him on just a half litre of oxygen and getting ready to go home.

We mark a few other milestones now:
  • Samuel has officially been extubated for as long as he was intubated; there are two months and three days on either side of that amazing moment.
  • He has a weaning plan for his last three medications and has come off of his Ursodial. Blood tests show that the damage done by his prolonged time on TPN has been reversed and his liver enzymes have returned to normal. 
  • Samuel had his second visit home on pass. He was home for four hours, snuggled and fed and got to sit up at the dinner table with his brothers and parents and grandparents. We said grace and sang Johnny Appleseed together. "Oh the Lord is good to me and so I thank the Lord..." indeed.

Samuel has dinner at home with his family.

Sam is teasing us by dancing with that 10 pound marker. He gains a little and then loses a little and then gains more than he lost. He's nine pounds 14 ounces today. Little stinker. He has developed some chub on his thighs but still has teeny little chicken ankles. Somehow I find this to be desperately adorable.

One of my favourite things about being with Samuel is feeding him. There is no mistaking that hunger cry. I waited more than two months to hear my baby make a noise and I am so grateful for his voice now. He gets stronger every day and takes more and more by bottle. As he tuckers out, he'll forget to drink and I will gently pull the bottle back to see if he's actually done. Usually, he wakes up and sucks it back into his mouth. This makes me giggle every time as it reminds me of when my dad used to fall asleep watching tv; we'd try to slip the remote out of his hand and he'd startle and grab it back with that "I'm not done with that!" indignance.

Samuel loves going for walks. He is very content in the Baby Bjorn carrier smushed into his mama. Me, him and a portable oxygen tank are getting pretty cozy together. He is off of 24-hour monitoring now so no more sat probe to take. We visited the ICU a couple of times last week and had some lovely moments with the people who took care of him there. One of his regular RTs got to hold him. He looked into Angel's face and put his tiny hand on her cheek. She teared up and said, "this is why I do my job."

Thank you.

Samuel also likes to have his hair brushed. (I know that referring to it as hair is rather optimistic but cut this mama some slack.) He becomes very still and his eyes roll back and he makes all these little squeaky sighing sounds. And I laugh. Sometimes I show other people and they laugh too. Sam has become entertainment. In fact, one day Nana and Boppa and I were laughing so much at him kicking and smiling that the nurses came in to see if we were having a party. Joyful, simple, no-nonsense pleasure. Isn't that what babies are all about?!

Frolicking naked on the quilt made for him by NeeNee (Arlene).

Found his hands.