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).