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?!)