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.