Eight weeks old

Today our sweet Samuel is 8 weeks old. Chris and I are sitting in his room (yay for hospital wi-fi!) after a meeting with his doctors. This afternoon, the big brains from ICU, Surgery, Anesthesia (Acute Pain Services), Respirology and ENT (Ear, Nose and Throat) came together to make a plan for our Samuel.

The buzz over the last few days has been about whether Samuel might need a tracheostomy. This is an airway surgically placed in his trachea to provide long-term ventilation. Being intubated with the endo-tracheal tube means that he must remain at least somewhat sedated and have limited holding or movement so as not to irritate or compromise his airway. That's okay for the short-term but we are at eight weeks and not ready to extubate just yet.

The ideal would be for Samuel to be extubated and function on an external course of oxygenation. Failing that, the trach would allow him to be a more normal baby while still on ventilation; we can pick him up, dress him, cuddle and bounce him, and start moving towards bringing him home. We can get on with attachment and development and, with less sedation, his brain can start recovering from the haze of narcotics and benzodiazepines. As he grows, the trach may prove helpful in providing oxygenation to get Samuel through viruses and the like.

So there would be advantages but a tracheostomy is a huge step. He could have this alternate airway for a few months or a few years. A voice by-pass valve can be put in once he is older but, until then, we would still not get to hear our Samuel cry or speak. This means that he wouldn't be able to signal distress and would have to be visible to a trained, awake adult at all times. There would be major lifestyle and family adjustments and ongoing risks of his open airway.

The plan from today's meeting is that Samuel will have another couple of weeks to work on the sedation and ventilation issues and to have a trial of extubation. The specifics of this plan are being overseen by the Dr. Ferrin (who we have dubbed our Pain Guru) from APS and the intensivists from ICU. Having Dr. Ferrin on board has already shown us some progress - and we appreciated that he referred to Samuel as a "tough guy" for being able to handle all these drugs rather than noting that he's a regular junkie at this point. We will see what our little man can do with the newly planned changes. We know that the tracheostomy is an option we can deal with if it turns out to be what he needs.

The great news is that Samuel's digestive system is working well enough that he is up to full feeds via his NG tube. On Monday, they turned off the TPN and lipids infusions that have provided IV nutrition since birth. He gets to have a full belly and I get to change diapers with real baby poops. Any grief I have about not being able to breastfeed him is erased by these signs of progress. Somehow it seems normal and fabulous that he be able to get his nourishment through a tube in his nose. And without the nasty TPN in his system, Samuel finally has that amazing, intoxicating baby smell.

The move to oral medications and the end to IV nutrition has brought us from the massive IV tree down to a regular old single IV pole. The nurses stopped giving Chris test results since they realized he was obsessing about the numbers. So he started counting how many syringe pumps were in service instead. Last week there were nine pumps. Today there are three - his two med infusions plus an extra pump for when he gets his antibiotics. Small things delight us.

The blood clot continues to be monitored and the Hematologist who visited him today had no concerns. He is on antibiotics for several weeks and anti-coagulants for several months to treat the blood infection and clot. The weekly echocardiograms show that Samuel's heart is strong and getting stronger - just as my Grandma assured us last October. The cardiac pressures are lower than they anticipated they could be at a month post-surgery.

The last couple of days have been more hopeful than they were last week. I have had good talks with Samuel's doctors and many amazing nurses. I am especially grateful to Dr. Meagan who sat with me on one of the darker days last week and gave me the full benefit of her medical expertise along with her heart resonance as a mother of littles. Samuel's medical team offers me understanding of his process and validation for my experience as his mama. I am in awe of the brilliance and compassion that they bring to our baby but also to us as his family.

This is a difficult phase of recovery. The veil of expecting Samuel to die has been lifted and we are happy, relieved, and grateful beyond words. Those feelings are real but so is the pain of watching my baby struggle and the grief of each limitation. It is daunting to maintain my connection to my baby and our long days in the hospital and also my connection to the "outside world" where my family is fed and happy and my boys have school and field trips and soccer practice. I would love to have my four boys all together so I could feel overwhelmed by the task of meeting their needs in a more normal way. :) I know I need to find the balance as we have several months ahead of us before Samuel could be home and more big adjustments when that happens.

I want to say more about how the boys are doing and I keep encouraging Chris to let his experience be voiced here as well. For now, I am signing off for some rest and wine with my husband while our big boys spend the night with Nana and Boppa and our baby boy gets loved up by his wonderful nurse Joanne. 

Chris with Samuel's tidy IV pump pole - no Milrinone! no TPN or lipids! no Fentanyl! Go Samuel!

Aunty Cathryn came to visit and brought a Peters' burger and a gift.
Colin sent this sweet dog to watch over our babe.

Samuel all tucked in with his many (many!) cozy soft Nana blankets.

Yes, folks. That's what a baby on midazolam, methadone, morphine, ketamine and clonidine looks like. Sleep well, sweet prince.

Photo captions

The photo and captions invitation was the idea of three of Samuel's nurses. I showed them the photo on my camera and they loved it. They suggested I print it to put on his door to remind people what we are aiming for - that this wee baby be able to wake up and come out to engage with his world.

Last week was really hard. Samuel was unsettled so much of the time. He was having desats and bradycardias several times a day. Every little touch made him wake up and cry, his mouth open and face scrunched up in full wail even though he makes no sound. He would get extra oxygen support and extra sedation until he settled, which sometimes took ten minutes and sometimes an hour. I tried everything in my mommy repertoire to calm him while watching him struggle and listening to the alarms going off. Even when he slept, he didn't look peaceful; his little brow would remain furrowed and he would have moments of writhing and looking distressed.

The photo was taken on Thursday when some magical balance of sedation was achieved for Samuel and he was awake for two hours, peaceful, alert, looking around, responding to my voice and Chris' in a way that he never had. We went home on such a high that evening. Later that night he crashed again and Friday was another awful day. Looking at his photo from Thursday evening was part of reminding myself there was another possibility for him.

The captions on his blog reminded me that people were with us in hope and humour. I also got private emails of care and that was lovely. I put the picture on the door of his hospital room and now the many ICU staff walk by, stop to look, smile at our baby and laugh at the captions. His little spirit is out there bringing them happiness and they are, in turn, bringing him love. I get to laugh with them about his sweet expression and watch the amazing energy coming through those big sliding glass doors. That love for our Sam is holding me up.

I know I said 'contest' but there is no way I could judge and choose among these captions. It's all just beautiful. (And besides, what on earth would I offer as a prize? A date with Samuel?)

Captions from Sam's PICU room

• Are we there yet?!
• You're gonna put WHAT WHERE?!
• Sorry. I thought it was just a fart.
• OMG! Has anyone seen where I put my eyebrows?!
• Are you guys SERIOUS?!
• Dude, where's my car?
• SOS! Mom?! Dad?! ANYONE?!!?!
• They are trying to keep me quiet, but I am gonna TELL!
• Too cool for school!
• What they talking about, Willis?
• Hey Peeps. Where's the party?
• Aren't I just so darn CUTE?!
• What are you looking at?! You want a piece of me?!
• Troublemaker? Who me? I don't know what you're talking about.
• You are complaining about snow? You should try an ETT! [endo-trachial tube - a little ICU humour! :)]

Captions from the blog:

• What? ANOTHER election?!
• Look at the stars... or are those really my mommy's eyes?
• Oh my mama told me there'll be days like these
•    - A little Van Morrison I must've heard in utero...
• Can Zachary do this face? I can...
• You put WHAT in my tube?!
• Yea, I have a tube in my nose. What's it to you?!
• I told her... I said... "just a little off the top."
• Are you lookin' at me? Are. you. lookin'. at ME?!
• Hey Mom, when you get that liquor license, make sure to sneak a few drops in my tube to take the edge off.
• Did you say, "Kirsten's not coming today" -?!
• I *like* my mohawk? You doubt me? Huh?
• So what's it to you?! Another bad haircut... what can I say?!
• You are putting these pictures on the internet?!

I looked again today. Really he is too cute and I could eat him up. I now think he is saying, "I love you and thank-you for loving me."

Caption contest

More news soon, but it has been a hard week and we need a little levity. So Samuel has suggested we have a contest to caption this photo that I took yesterday. He thinks it is fun to make people read his mind - a real chip off the old block there.  :)

Seven weeks old

Our Samuel is seven weeks old as of yesterday. I was adding up his milestones - it's day 50 in ICU, moved from oscillator to conventional ventilator on day 10, transport to Children's Hospital PICU on day 11, infection on day 18, diaphragmatic hernia repair surgery on day 25, more infection on day 40. I held my baby on days 12, 37, 38 and 48. No one else has held him. I was hoping to add days to extubation to this list but it hasn't happened yet.

Anyone who has spent time in the hospital knows that time and reality are altered. I swear that the clock over Samuel's bed ticks to a different system than the rest of the world. Thank goodness for the big windows in his room to give us some sense of day time and the outside world. Sometimes I look out and think of all the normal things that people are doing, things I used to do. My friend Lisa said she wished that we could trade thoughts for a while so that I could think things like "when are the library books due back?" and "oh no, we're almost out of peanut butter!" This felt like a very sweet wish. 

Chris went back to work three days a week. He puts all of himself into his work when he is there and I am amazed that he is able to see clients and go to meetings and develop presentations when I know that his heart is with his family. I am grateful for the support of his employer and understanding of his colleagues. I am also grateful for the child care that has shown up so that Jakey is entertained while I visit Samuel. It seems that Jakey and Max have developed a little boys version of a man-crush so it's lovely that Max's mom doesn't mind an extra kid a couple of afternoons a week.  

FIVE WEEKS....

When we hit the five week mark, Samuel was sailing through the slow and steady steps towards extubation. He was up on his feeds and weaning ventilation and sedation with few hiccups. Even with all the cautions, it was hard to tame the elation of watching him heal.

As the relief of Samuel's progress started to sink in, I started to sink into some of my own exhaustion and heartbreak. Our nurse on one of those darker days had worked in the NICU for years where all of her patients were newborns and every mum was newly post-partum. Jaclyn was attuned to my sadness and to the longing I had for my Samuel; our process is different than it is for older kids in the PICU and she gently reminded some of our medical team of this. When I returned from a tearful wander through the hospital halls, Dr. Cathy Ross informed me that it was time for a hold, that Samuel was well enough and that it was important for us both.

Samuel in my arms. He always turns his head into me when I hold him.

Finally, his arms were unrestrained and he can put his hand up to his face as he always liked to do in utero (I am in charge of watching that he doesn't yank on that breathing tube!)

Chris showed up after work in time to be part of our epic cuddle.

I held my baby for four hours. His crew of sweet nurses came in to coo over him in my arms. There were many photos taken. Dr. Cathy came in and talked to me for a long time. She said, "now that we don't think he's going to die..." and I started to cry. It was the first time anyone had said it out loud. It was beautiful. She gave me a whole lot of information and understanding that day, and some special mama-nurturance to boot. There has been a little extra looking-after coming from her since then and I am missing her while she's off hiking in Peru with her own four kids.

Samuel and I had a cuddle for a couple of hours the next day as well. I should give you a picture of what it takes for me to hold him. A nurse spends about five minutes organizing his many lines and probes and the feeding tube so that they don't get mixed up or pulled out. A respiratory therapist comes in to manage the breathing tube and any other ventilation monitors. I pull a chair over right next to his bed since all of that won't reach very far. I organize myself with pillows and such and they they do a 1-2-3 lift and move him into my arms.

Then I sit very still with him so that the breathing tube does not move and irritate or compromise his airway. If I need to shift my weight, I call the RT back in to manage any repositioning of Samuel's breathing tube. It's not exactly the relaxing snuggle you might have with your typical unencumbered baby ... but I'll take it. I was happy to feel his weight in my arms and to be holding him when he opened his eyes. We gazed and sang and had a conversation about intestinal motility to complement our previous talk about lung development.

It was the next day that Samuel began seeming unsettled and not tolerating stimulation. The desats and bradycardias returned. We thought at first that he'd reached a critical point in his sedation wean and was uncomfortable but he kept getting worse and spiking the occasional fever. After a couple of days of this, he was pulled off of his feeds again and cultured for infection.

SIX WEEKS....

The cultures were positive for staphylococcus again - one infection in his lungs and a different strain in his blood. He spent the week resting, on two different anti-biotics, back up on ventilator settings and on sedation, almost to the same place he'd started. It was terribly disappointing to see things moving backwards and distressing to see Samuel crying and so agitated.

At the end of that difficult week, we were told that Samuel had a blood clot from his femoral line. After a long chat with the Hematologist, Samuel was put on blood thinners to help blunt any growth of the clot. The course of treatment is three to six months with two subcutaneous injections every day. These injections go into the skin as an insulin injection would and they will cause bruising and swelling because Samuel is so small.

Additional blood work will be taken to monitor the treatment. The infected femoral line will come out once they consider it safe to do so without dislodging the clot. He will be on a long course of anti-biotics then to clear that infection. A sub-clavean line (a central line in his neck) will be put in since Samuel still needs several lines to accommodate his nutrition and various medications. Any lines below the waist are too risky because of the blood clot in his groin. He no longer has an arterial line so every blood test involves a poke or two, depending how much blood they need and whether they get a good vein the first time. My baby is now a bit of a pin cushion and almost always has Diego band-aids on his heels and hands.

Samuel sleeping with his comfort silkie from Auntie Gloria.

The tiny hand - and long piano-playing fingers - of our little warrior.

SEVEN WEEKS....

Samuel is negative for the infection now, although still on antibiotics for several more weeks. He seems to be feeling better. The process to increase feeds and decrease medications is back on. The sedation wean is back to where it was when he got so sick ten days ago. He is having signs of withdrawal from the heavy-duty drugs so Pain Services will come and help devise plan to help him wean with minimal discomfort.

I held him again yesterday at last, drank in the feel and smell of him as he lay peacefully in my arms. He is starting to seem less 'stoned' now so that I feel like I can really see my baby when he wakes up. He responds to both Chris and I, stirs to the sound of our voices and seems more peaceful when one of us is there. It is a good reminder that our Samuel is still in there. When he is so ill and so sedated, it is hard to see the "normal" baby that we know he is. He is so much more than his defect or his series of symptoms. He is our crying, pooping, smiling - yes, smiling! - baby boy.

As Samuel does his job of healing here at the Children's Hospital, his NeeNee is having her own struggle over at the Foothills Tom Baker Cancer Centre. My beautiful friend Arlene was diagnosed on Monday with leukemia. Samuel and I will be extending his warrior strength and our prayers over to her and her family. 

After a desat episode, Samuel slips into a sleep with the remnants of his cranky face still evident in furrowed brow. (Oh my goodness, he looks like Zachary!)

After a tough afternoon, it was the weight and comfort of this old afghan made by his Great-Grandma Borbridge that finally helped Samuel to settle.

A few messages from Samuel...

• Hi Aunty Barb from the NICU! Thank you for reading and please say hello to everyone there from me. Tell Dr. Carlos that I am still the boss. Mommy has decided that she likes my NICU haircut and will maintain it throughout my childhood.
• Hey Elliot! I am so glad you got to go home after only a week of recovering from your reherniation repair surgery. Good work, buddy! You are my inspiration.
• I love you NeeNee. Get better!
• Thank you, Nana, for outfitting me in the most beautiful blankets the PICU has ever seen. The nurses fawn over how soft and cute they are and are amazed that you hand-stitched them all. I know you and Boppa are with me.
• Blessings to all for your beautiful support of my mum and dad and big brothers.

Happy St. Patrick's Day

Just a quick note to let you know that Samuel seems to be responding to the antibiotics and feeling a little better. He is still testing positive for staphylococcus in his lung and blood cultures, which is not great news but also not uncommon in babies who have been intubated and ventilated for as long as he has. We just keep hoping that the medications will help his body fight off the infection and we can resume moving towards extubation.

The tests confirmed that he does not have a gastro-intestinal infection (yay!) and so they began very slow feeds today through his NG tube. It can be tough getting things working after the digestive system has grown squished up in his chest and then been deprived of food for several weeks.

Many of our strides from the previous week have been paused or rewound while Samuel has been sick. He is back on more of the sedation that he was weaning off of. His ventilator settings are up a bit. He's gone back on one of the cardiac medications because his blood pressure was dropping. So there will be some work to do when he is feeling better. We are assured this should go more quickly than the first round of weaning since his body already managed those steps.

As well, we have not been able to hold him, bathe him, dress him, or really touch him much since any stimulation just made him more agitated. I sit in a chair away from his bed or busy myself tidying so that I don't bug him. It's hard not to rub lotion on his skin and re-cozy his blankets for the umpteenth time. Chris comes in after work each day and reads Samuel the same book - The Whale and the Snail by Julia Donaldson - and Samuel stirs peacefully to the sound of his voice.

Yesterday, my mom and I went shopping and found Samuel a green hat for St. Patrick's Day - small things amuse us - and took a few more photos. 

Happy St. Patrick's Day!

What will Samuel think if he opens his eyes and sees his parents in these masks?!

Brothers Jacob and Zachary playing dress-up. (That's Boppa's old police shirt and hat, and possibly Boppa's old tough guy facial expression too.)

Brother Daniel's half birthday (yea, we celebrate half-birthdays, I know it's weird) cake.

More infection

Samuel had a really good few days last week. He seemed to be rallying well beyond what we could have expected and the sedation wean and ventilator weans were slowly moving in the right direction. He went back on drip feeds on Friday to see if his belly was ready to try again. There had been no indication that he'd had an infection after his night of vomiting and it seemed like he was clear. The doctors were so pleased with how he was doing, even though we all knew that things needed to move slowly for him. I had a good talk with Dr. Cathy Ross where she answered my many questions and offered me reassurance and some mama-nurturance to boot. 

On Thursday I got to hold him and he spent four glorious hours in my arms. He was peacefully awake for about a half hour of that time and we got to coo and gaze at each other. (Okay, it was me cooing, but he would coo back if not for that darn breathing tube, I'm sure of it.) He was so calm during this time and I drank it in with every cell. I could feel the connection to my baby even though I held him still in one position so that his breathing tube was stable, had to call a respiratory therapist if I so much as needed to shift my weight. I knew that there would be hiccups, that there are several months of hospital time before he might come home. But I could feel the relief of knowing that he was healing, that the months of waiting for him to die were most likely behind us now.

Since then, Samuel has been increasingly unstable. It started out as just some extra touchiness upon handling, desatting (dropping oxygen saturation levels) and bradycardias (dropping heart rate). Since his sedation had been weaned back, it was assumed he was just a little more agitated. He got some Tylenol or a bolus of extra sedation if he seemed too uncomfortable or if his number just wouldn't return to normal. They started another pain medication that has less of a dependency effect to help him wean off the hard core drugs and still be comfortable.

For the first time, I saw my baby not just make his grumpy face but really, earnestly, cry. He doesn't make noise because of the breathing tube but his face is in an all-out wail and he wriggles in distress. I try comforting him with my voice or touch but nothing works. My whole body begs to pick him up, cuddle and rock him, nurse him. He gets extra oxygen, extra sedation, whatever they can do to calm him. Sometimes these periods would last fifteen minutes before he would settle, the whole time with monitors beeping off as his numbers dropped. Now these periods are lasting an hour or more.

There are signs of intestinal inflammation and they want to make sure that's not an infection. Yesterday, they took Samuel off of his drip feeds again and started anti-biotics. Today I came in and found an infection alert on his door. His cultures came back positive for another staph infection in his lungs. We need to gown and mask to go in his room, in addition to the usual hand-washing. We are waiting for more specific information about what his little body is fighting but some generalized treatment has already been started.

It takes little for my fear to surge. I sit in his room and inhale, then exhale. I am never without my prayer beads as they are so comforting to me but I forgot them today. I remind myself that I am connected without them. It's okay. In the moment. Ride the wave. Breathe.

[Sorry I have not updated here more. Chris went back to work last week and it has been a bit overwhelming. I will have photos and such to share when I am back on my home computer instead of at the hospital patient computer.]

A setback, a spa treatment, and a special sleeper

Shortly after I finished my blog entry at midnight on Saturday, Samuel started throwing up. He threw up three times that night and so they took him off of his feeds completely, modified his IV nutrition to compensate, and put his ventilator settings back up. So much for increasing feeds and weaning ventilation. An X-ray, a belly ultrasound, and routine sepsis cultures were done the next morning. He is off feeds for five days now while we make sure there is not a problem requiring more attention. So far, the scans look good and so does he. It is possible that the changes were just a little too much, too soon, for our persnickety little boss-man.

Since Samuel was stable this morning, they started the slow wean from one of his narcotics. They also tried to get the ventilator settings back down again but Samuel was not happy with this. After a couple of hours of frustrating his very skilled and attentive respiratory therapist, it was decided to just let him coast for the rest of the day. 

Samuel did tolerate his nurse and I giving him a bath and changing his bedding. Jen and I laid out a basin of warm water, towels, soap, tiny nail clippers, lotion and new blankets. We fussed and cooed over him for some time during this full-on spa treatment. No more dry skin and barfy blankets for this baby. Jen even suggested that we put him in a sleeper, so long as it had snaps so that we could work around his various lines. I happened to have one ready for this moment; a soft blue sleeper that has been worn by all three of his brothers before him. Jen found him a cap and I took many photos of my fourth boy dressed for the first time.

I included a photo of his manicure below. However, I did not take a photo of me teaching Samuel to give the finger. Seconds after his Foley catheter was removed, Samuel peed. Jen and I felt sure that this was a "screw you and your Foley" kind of pee. The boy has attitude, as evidenced by his fight against this whole diaphragmatic hernia doomsday blah blah blah. It seemed apt that he have some new ways to communicate besides desats, grumpy faces, and peeing on things. Yea, so 'flipping the bird' is not the most appropriate, but we work with what we've got at the time. Rage against the machine, little dude.

Sweet Sam with a new lid (to cover the bad 'do).

His first sleeper - previously worn by Daniel, Zachary, and Jacob.

A baby manicure from Mommy.

One more picture. Okay, sorry. I'll stop now.

A little more light

Samuel is now one week post-surgery. He continues to take small healing steps and to surprise and delight us.

Wednesday was Samuel’s day five post-op, a day that our nurse said is considered significant in the recovery process. The doctors still remind us that there is a long road ahead, that there could be a series of bumps and difficulties, that he is a sick baby and that the unexpected can happen. But this was the day that the focus began to cautiously shift from Samuel healing from surgery to planning his next steps.

The resident assigned to Samuel is Dr. Aoife (pronounced Ee-fa) O’Carroll and she is wonderful. She spoke with us for a long time on Wednesday afternoon to help us understand where things are now. Aoife loves “Sam” and we’ve felt her interest in connecting to us and understanding our experience as his family. She is that beautiful blend of brilliance and compassion that births exceptional physicians and I am grateful to have her in addition to the fabulous “full-fledged” intensivists here.

The plans for Samuel now are weaning from the sedation, weaning from the ventilation, and getting his digestive system working. Wednesday brought us some good news in the latter department. When Chris and I arrived at the ICU, the team was outside Samuel’s room doing rounds. His nurse leaned over and whispered to me, “He pooped! Twice!” Aoife shared the excitement with the medical team as they reviewed his progress. By later that day, even the unit social worker was in on the “Samuel pooped!” buzz.

For a baby who had his entire digestive system stuffed up in his chest just days ago, this was really big news. Samuel had some feed dripped in via his NG tube the day after surgery and it didn’t work. So they gave him some time, tried again Tuesday night, and his little guts did what they are supposed to do. Wow.

Okay, maybe talking about my baby’s poop is just way too much information for the blog. Really though, some parents talk about their “normal” baby’s pooping and it’s not even the accomplishment it is for Samuel. Why shouldn’t I brag about his talents?! I also thought of how Samuel might feel years from now about me inviting excitement around his pooping and peeing. I decided that it is a good sign that I am so willing to embarrass him; why should he be any different than the rest of my children?! So there you go. End of poop stories. For now.

Samuel’s surgeon visits regularly also and we all gush about his progress. His belly is soft so he is accommodating those relocated abdominal organs. There have been no indicators of internal bleeding so they are no longer worried about his spleen. Best of all, Dr. Brindle told us about seeing his left lung during surgery when she pulled the intestine down. She said she often can’t see lung on the defect side because it is high up and small but Samuel somehow has a decent sized lung there. Our best hope was that his right lung would have enough functional capacity for Samuel’s life; his left lung is an exciting bonus.

Dr. Brindle reminded us again this there is no short, straight path for Samuel. There will be more surgeries, some respiratory issues, and he will likely always have some pulmonary hypertension. But her optimism was obvious and she doesn't offer that freely. She has been on this journey with us since Samuel was first diagnosed at the end of the summer and she supported the dire predictions. She is so pleased with this little guy who lays healing in his bed while we stand around him conversing about his future.

The weaning from various life supports continues. On Thursday, Samuel came off another of the cardiac medications, Prostin, that he has been on since birth. They tried three times to wean him off of the nitric oxide before surgery but his little body needed the support to keep his pressures down. Thursday saw the nitric oxide turned off and not even a blip from Samuel. On Friday, Samuel’s echocardiogram showed that his heart pressures were correcting and the blood was moving through in the right direction. The team decided that it was time to start weaning the ventilator settings to help our baby learn how to breathe on his own.

These are tiny steps and will be taken very slowly based on what Samuel tells us he is okay with. Coming off the pain meds might be rocky. He will likely find a maximum amount of the feeds that he can handle for a while. The desats continue occasionally but at least it is not because someone spoke in his near vicinity or looked at him sideways. I am pretty sure my coffee breath was the cause of his desat the other day. This does not speak well of my oral hygiene of late but is a reassuring sign of Samuel’s olfactory functioning.

The baby steps, the ups and downs, the medical interventions, have all become somewhat normal now. Yesterday I noticed Samuel’s NG tube, which he has had for a week but I don’t see it when I look at his sweet face. Doesn’t everyone’s baby have a tube of milk up their nose?!

It is late Saturday evening and I am sitting in Samuel’s room while he sleeps. Outside, it is snowing that gentle snow that glitters like diamonds. Next door, Samuel’s little friend with cancer has been extubated and is sleeping peacefully. The nurses are moving from patient to patient on another too-busy night in the ICU. I can see his monitors and how Samuel is initiating almost every breath on his own right now. The ventilator supports him to make sure he gets full breaths and doesn’t miss any. The drip feeds are being gradually increased. He has been fed through IV since birth but now his stomach seems ready to handle at least some of the job. Samuel is doing just as he should.

The next step is weaning the sedation that kept his body still and calm while he waited for, and then healed from, surgery. Today he came off one of his pain medications but the remaining two are narcotics that he is physiologically dependent on. Weaning from those will be a slow and careful process to minimize withdrawal. Our Samuel is off to Baby Rehab this coming week.

Despite the heavy sedation, Samuel has regular periods of wakefulness now where his eyes are open, his face is expressive, and his arms and legs move about. We quietly talk and read and sing to him. He drifts back to sleep when he is ready. We watch his eyes and spontaneous grins and muse on what he might be dreaming of. These are not the days of him being sedated and paralyzed to the point where it was hard to remember he was alive in there.

Samuel had visits from all of his brothers this week. Daniel and Zachary each read a book to him and even Jakey has started to delight in him. I finally gave my head a shake and remembered to take a photo of him with his grandparents when they visited. Chris and I are here every day for as much time as we can be while still maintaining life for our boys at home. I especially try to be present for medical rounds each day so that I can listen in on the process of understanding and helping sweet Sam.

On Thursday, I went the whole day without crying. The ache in my chest lifted a bit. I think I held my breath a little less. I have spent many months waiting for my baby to die. I feel afraid to write that lest someone think that I didn’t have enough faith or enough love. My faith was tested and has grown. My love was immense and unshakable. It is reasonable to brace yourself for impact when there is a “what if” heading straight for you, when that “what if” is borne out by science and experience and spoken of by expert after expert.

Now, for the first time, the “what if Samuel lives” feels bigger than the “what if Samuel dies.” There’s a little more light. And that is a beautiful, blessed, amazing, thing.

Love from Nana and Boppa.

Daniel and Zachary reading to their baby brother.

Jakey "shaking feet" with Samuel (since shaking hands is impossible with all those IVs).

Happy 1 month birthday, Samuel!

At 3:20 p.m. today, Samuel turned a month old. Some of his favourite nurses - Laura, Kelly and Danielle - were all there at the time and we whispered our happy birthday wishes to him. I can't believe what has happened in a month. I keep thinking of that feeling I had when he was born, that primal longing to see and hold my baby coupled with the desperate grief of expecting that he would die. And now here he is.

My celebration of Samuel today included many sweet moments. I sat with him in the quiet and I rubbed lotion on his feet, then massaged his legs. He is much less swollen and his legs have that skinny newborn feel. Then his nurses and I bathed him using facecloths and a basin of warm water, washing the bits of him not covered in tape and probes and wires. There was incredible tenderness shared in our quiet voices and gentle touches. We changed his bedding, a production involving a nurse to manage his lines, a respiratory therapist to manage the breathing tubes, me to lift my sweet baby up and another nurse to pull one Nana blanket out and tuck in the newly-made Nana blanket I brought from home.

That moment of lifting him was the closest I have come to holding Samuel since our one and only cuddle when he was eleven days old. To bathe him, change his diaper, cut his tiny fingernails, rub lotion on his skin, were simple acts of mama nurturance that I have loved with my other babies. Being able to do that for Samuel felt amazing and connecting in ways I never could have appreciated before. My heart was full. I couldn`t stop smiling.

Samuel tolerated this all so well that Kelly agreed we could take it a step further. We took out the ink pad and cardstock that I brought and made prints of his little feet. I let myself think of him as one day being a teenager with big stinky feet who was trying to eat us out of house and home and I would remember this tiny-footed baby moment. We`d been tending to him together for over an hour by the time we were done. The sweetness of her doing all of that with me filled me with yet more gratitude.

Later that afternoon, Samuel opened his eyes for a while. He`s been having these longer periods of waking. His sedation keeps him peaceful but he is able to be alert at times too. Chris and Daniel arrived just in time for this round of gazing and cooing. Most exciting was watching the lines on the ventilator show us for the first time how Samuel was working to take his own breaths. The effort of this wore him out quickly and it was back to resting in quiet stillness and his sunglasses. But it was icing on the cake to see these little signs of Samuel getting stronger.

Happy birthday, amazing boy. Thank you for this beautiful day.

A visit from big brother Zachary.

A visit from big brother Daniel.

Peaceful gaze from our one month old Samuel.

Recovering sloooowly

Samuel continues to surprise us all with his resilience and strength. He did amazingly well following his surgery. He came off one of the cardiac medications almost immediately, even though he'd not be able to wean off of it before. An hour after surgery he was already at the lowest ventilator settings he'd ever seen. The post-operative x-ray showed lung inflation beyond what anyone anticipated given all the organs that were in his chest. The mood in his room was relieved, almost celebratory, even while we all cautiously awaited the next dip in the roller coaster that has been Samuel's young life.

There has been no crash, per se. He started having some rough spots starting Sunday night, which is to be expected given the enormity of the surgery that he just underwent, his ongoing issues with pulmonary hypertension, and tolerance to the pain meds that he's been on up to this point. They keep tweaking the pain medication to keep him comfortable. The drug that was added yesterday is incompatible with some of his other meds so he's needed yet another IV line. Finding more lines on Samuel's wee body has become complicated. A specially trained transport nurse from the Foothills came over to put in a PICC line and the other lines are placed by the anesthesiologist or intensivists.

Samuel now has a femoral line in his groin, an arterial line in his right hand, a PICC line in his right arm, and an IV in his left hand. He has taken to doing bicep curls using the numerous lines, tapes, and little splints. His feet are both unobstructed for the time being and his little toes are less swollen than they have been so I am taking the opportunity to do foot prints for him today.

So far, there have been no signs of internal bleeding around his spleen and it seems that he is accommodating all the organs that have found their home in his abdomen. His pulmonary hypertension and respiration have either stayed the same or gotten slightly better since the surgery. Some children get worse for a time post-operatively so we are happy with status quo at this point.

Samuel is still heavily sedated and gets topped up whenever he has to be poked, suctioned, moved, x-rayed or otherwise disturbed. Even so, he sometimes launches a desat as a way of telling people to leave him to rest. In these periods where he is on no stimulation, my only mama role becomes sitting in a chair in the dark and obnoxiously monitoring the number of people in his room and their ability to whisper. Oh, and folding his Nana-blankets. Gotta find me some kind of OCD behaviour for our new environment.

He has amazing care, including a regular round of nurses who love him. Laura, Kelly, Jennifer and Steph offer him nurturance in ways that I can't and are an everyday source of comfort and friendship to me. Kelly went off shift at 3 on Friday but texted Jen that night to make sure that surgery went okay. The resident working with Samuel told me that she thought of him all weekend that she was off and was so happy to see how he was doing. His surgeon checked on him throughout the night after surgery; I reminded her that she has been with us on this journey since he was first diagnosed the end of August and she told me that our Samuel meant a lot to her. The people here know that babies grow on love, not just on medical care and an infusion of amino acids.

The relief on Saturday was buoying and I started to feel almost disoriented from it. Apparently, I didn't quite know what to do without the stress of anticipating surgery every day so I went looking for a bit of trouble. Maybe his ears aren't shaped right and that means he has a genetic disorder. His eyes roll back a bit when he opens them so maybe he has neurological damage. (Forget that he has enough drugs in him to give a street addict a run for his money so of course his eyes are wonky). I realized quickly what I was doing and made myself stop, be in the moment, hold his hand, read some more Pema Chodron and a few Psalms.

I would love to hold my baby. I would love to see what he looks like without a breathing tube taped across his lips and cheeks. I would love to feed him. I would love to put him in a cute blue stripey sleeper and hat. I would love to bring him home and make him a room and yell at his brothers not to wake him when he's napping. Did I mention that I would love to hold my baby? This is becoming our "normal" with Samuel and there is not much point reminding myself that it's not normal. Deleting the big "what if" that still hangs over him, I know that the hospital is his home for the next several months.

The plan from here is to let him recover from the surgery, to wean his life supports to see what his lungs can do on their own, and to work on getting his digestive system working again with some feeds. All this needs to happen very slowly, one small step at a time with an eye to how Samuel tolerates. As Dr. Carlos always reminded us, Samuel is the boss... our persnickety but much-loved boss.

Waiting for them to come take Samuel to surgery with all of his accessories.

Mum and Daddy breathing and memorizing Samuel while we wait.

Our sweet munchkin.

Waiting for Samuel to return from surgery... 7:45 Friday evening and he's almost done.

Samuel following a major structural re-org.
That's his incision just under the left side of his rib cage.

The no stimulation regime - ear plugs and bili goggles.
(Hey Elliot! Remember these shades?! And do you like my new NG tube?!)