Samuel’s ups and downs

We’ve been told that babies with diaphragmatic hernias tend to be incredibly labile so that they can appear very hopeful and strong and then go downhill very quickly. That is what we are experiencing with our Samuel now.

Saturday started out as a great day for him. He was stable with all good numbers even after the anticipated trauma of the transport on Friday. Our nurse, Cody, made good on his promise to make sure that Samuel and I had a cuddle. It took him and the respiratory therapist together to manage all of the tubes and machines so that Samuel could spend some time in his mama’s arms. Settled into the chair with my baby pressed against me, the rush of hormones in my body was AMAZING. I exhaled as if I’d been holding my breath for days. My pupils dilated. My whole body relaxed. I was officially stoned on Samuel.

Cuddling with my sweet Samuel for the first time.

More cuddling and an important mother-son chat about lung development.

I held Samuel for almost an hour until his doctor came to put in the new lines. This was a surgical procedure and I knew it was better that I didn’t stick around to watch. My friend Lori had come to visit and to make sure I was eating and doing okay. She and I went to snack and talk and cry together in the bright open cafeteria of the Children’s Hospital.

(The food really is rather good here as hospital cafeterias go. It is still terribly expensive and Lori and I did take issue with the fact that they don’t sell “real” Coca-cola because it is an unhealthy choice but they sell all the juices with just as much sugar AND they sell the diet sodas with all of that horrific aspartame! This concludes my ‘hospital food’ rant for today’s blog entry.)

When Lori and I returned, the doctor was done and off to see another family, Samuel was sedated and Cody was cleaning up the soup of tubes. We were told that Samuel was doing amazingly well and doctors were talking about the possibility of surgery on Monday or Tuesday. On rounds, Samuel was being compared to another diaphragmatic hernia baby who was up on the “good” unit being weaned off of blood pressure medications and learning how to take food. That baby was a month and a half old. Our hearts soared.

I went home for supper and Chris came back to see him Saturday evening and meet the night nurse, Marie. Her experience and nurturing approach felt comforting right away. All was well. I went back to the hospital the next morning. I remember walking down the hallway to the PICU and feeling just a little bit brave, like things could be okay.

I arrived to a sign on Samuel’s door reminding people to be quiet. His blinds were drawn and he was wearing tiny ear plugs to try to help decrease any stimulation that might agitate him. His nurse, Jessica, was a young, sweet-voiced woman not afraid to take on a mama bear role; the RTs checked with her first before they did anything in his room and she gently kicked out people who spoke near him in anything but a whisper.

Samuel had taken a downturn in the middle of the night. His lung and heart pressures were up and the various interventions were not helping. They were changing medications and tweaking machine settings. Blood gasses were being drawn sometimes hourly. He was sedated to keep him still and quiet in the hopes that this would help relieve some of the pressure on his heart. The tone of his caregivers had shifted from hopeful and amazed back to “this is a very sick baby.” His doctor that day explained what was happening in his heart and was blunt in letting me know, “this is how the diaphragm babies die.”

I didn’t hear anything she said after that. It wasn’t that my thoughts ran away with me or I started to get upset but more that my own breathing and swallowing suddenly consumed all the energy I had. I made my voice as confident as I could but it came out small and shaky. I said, “if there is a point where we need to discuss letting him go, I want to know that you will talk to us.” She promised she would, but said, “not yet.”

We think what happened is that Samuel did not have the reserves to handle all the procedures on Saturday. He had a femoral line put into his groin – the surgically placed central line that we’d been waiting for. A new arterial line was put into his foot. The umbilical lines that had offered nourishment and medications since his birth were removed. The two IVs in his head were taken out. The tube going down into his stomach dislodged so they had to put it back in but then it didn’t work and they had to do it again. There was a bunch of cleaning up around all of this – removing adhesives from his skin and hair and re-taping and jostling, all things he was handling well up until this point. And all of this was in addition to the usual suctioning and blood tests and such. And, as much as I hate to say it, the time I spent holding him may have been stressful for him also. As amazing as it felt to me, it may have been too soon for him. 

Once the anaesthetic wore off, Samuel was uncomfortable from all of this just as any of us would be. We would have a bit of pain medication and bounce back but he is too sick for that kind of recovery. So he has destabilized and that remains so tonight, more than 48 hours later.

It is disappointing, to say the least. I try to be positive and appreciate that he let us know the limits of his strength. If the procedures from Saturday made him this unstable, he would not have tolerated going to the operating room. Our plans for surgery early this week are over; plans for surgery at all are on hold. We just wait and let Samuel communicate with us what he can do and what he needs help with. As Dr. Carlos at NICU always said, he is the boss.

I am reasonably peaceful about the waiting and letting the medical staff do their thing. (I am sure those who know me will take a moment to marvel at the modification of my control-loving nature.) My practice of surrender continues and I know that there is very little I have control of at this point.

What is harder is when I feel like I can’t connect with him. I need to touch him and be close to him. I am unsettled and agitated when I am away from him for long periods. I have physical pain in my belly and chest when he is surrounded by medical personnel doing things to him. They are as caring as they can be and my appreciation for their work is boundless. I know that his little body has to undergo these things but I want to keep his spirit protected and bathed in love throughout it all.

I know Samuel needs the connection too – not always from me but I am the most obvious source. Two weeks ago, he was still swimming in my belly soothed by the sounds of my heartbeat and voice. I have my own ways of touching him that seem to comfort him. Yesterday, I sat with my hand resting a certain way on his chest and his pressures eased. I removed my hand and those numbers popped back up. So I sat there with my hand like that for over an hour until I went home to help put my big boys to bed. Before I left, his nurse, Marie, asked me to show her what I’d been doing that relaxed him. She promised to love him up for me through the night.

I didn’t tell Marie that this touch also involves my own little repetitive conversations with God. Samuel is surrounded by prayers from friends, family, clients, colleagues, neighbours and from people who I don’t even know. I am so touched and grateful. My mama prayers are so simple but they can come only from me.

It is Monday night now and he is still struggling. He is back on nitric oxide to open up his blood vessels so his heart doesn’t have to work so hard. He is on his usual array of blood pressure and heart medications, antibiotics, pain medications, and now a sedative as well. In amongst all of that technology is a picture of his brothers, a note and a drawing from Zachary, a couple of homemade Valentine’s Day cards and his blankets from Nana.

The heavy sedation means that my sweet, perfect baby lays there completely still and limp. I look forward to him feeling better and being able to press his feet against my hand and squeeze my finger and wrinkle up his face to remind me that he is in there. I believe that he can feel me there even though he is sick and sedated so he can’t respond right now. I sit with my hand on his head, tuck his tiny fingers around my finger and hold his hand. I pray for my breath, heart, blood, love - his for the taking when he was in my womb - to reach him now.