Weary & Burdened Ep. 003: NICU Roller Coaster

In Vancouver there is a roller coaster at Playland that is considered to be one of the best roller coaster rides in the world. It’s called the Wooden Roller Coaster. Jazzy name hey? So as you might expect, it’s a wooden roller coaster which is partly what makes it so great. Also adding to its draw is that it was constructed in 1958. My husband went on it once and told me, as I was too chicken to join him, that he thought he was going to die. He said it was rickety and old leaving him certain it was going to go flying off the tracks. Thankfully, this is all just an effect of the ride that keeps people coming back for more.

Roller coasters have this great duality to them. There is part of the ride where you feel elation as you travel exceedingly fast through twists and loops and surge to the top of camel hops. You screech and smile and lift your hands in the air taking in all the fun. Then there are the drops which trigger a fear response. The moments where you plummet downwards and you get that odd sensation in your stomach where it feels like the bottom has dropped out. There is an instant where you instinctively hold your breath and you fall, trusting the ride will catch you on the upswing.

An added bonus to the Wooden Roller Coaster is the ominous clickety-clacking of the ride, creating suspense while you crest the top of any drops. As you descend, the ride jostles you around and the wood does nothing to comfort you as you bounce from side to side. Upon exiting the roller coaster, your body has a physical reminder, if only for a short time, that you experienced the ride.

The NICU is much the same way. Moments of elation paired with moments of dread. We all hoped to get out unscathed and carry with us just a few signs we were ever there.

Every person who visited, called, texted or contacted us through social media brought with them a piece of love and strength. I read every message even though I was unable to respond regularly. You would not believe how many times I felt total despair and a text message or Facebook post appeared and a huge sigh of relief was mine. I felt as though we were the most well supported family in the hospital. The level to which love was shown to us was a privilege not everyone received. I was and still am touched by the kindness of others.

Like having a child for the first time, the NICU brings with it a series of “firsts.” There are things that happen which one would normally take for granted. For example, the first diaper change. I was shaking like a leaf. He was so little. It was so scary but I did it and loved touching him. I got to take his temperature and clean his mouth too. Seems insignificant if you've done it a thousand times with other children but it was awesome.

For anyone who has spent time with someone who is seriously or critically ill, injured or infirm, you know the emotions that accompany it are akin to a roller-coaster ride. There are large swings up and down. I never wanted to get too high because it made the lows feel like a plummet from the top floor but I tried to enjoy the joyous moments with all the bliss it brought with it. Even if just for a moment, I gave myself permission to breath a huge sigh of relief and feel somewhat elated. We deserved that.

Twisting and turning, the day of November 8th would bring with it a series of emotional loops. I went to visit David at the usual time and found a baby with fantastic respiration and blood pressure so they were going to wean him off one of the medications. He was scheduled for a head ultrasound and an abdominal x-ray, something they’d done a tonne of times. After a bit of a visit I went to pump and when I returned there was a doctor waiting for me. Probably for the head scan. Yep, it came back with 2 minor bleeds. Nothing of concern. Phew. "But," she said. Oh I could throw up when they said that. His x-ray showed air in the abdomen which was a sign of a perforation. The surgical team was paged. A Surgical Fellow came down and wanted to know if I knew David's chances of leaving the NICU. Seriously? This again? I thought, "I don't care about your statistics and/or your thoughts of whether he's going to 'make it'." The director of the NICU came to my rescue. He was NOT happy about the train of conversation. He told me the 1st week was a good indication and 3 out of 4 babies in David's situation make it out of the NICU. That's up from the 1 out of 2 we faced the first week. The surgical team decided to forgo surgery and instead were to insert a drain which was much less invasive. 50% of drains are followed by surgery but I didn’t think about that.

Roller coaster ride down.

For many people who have had a child, they’ve experienced that odd scenario where you take your brand new baby to the grocery store and a stranger walks up and touches them. Just touches them without your permission. Then you want to crawl out of your skin. Now imagine the hypervigilance of having a critically ill infant that is so tiny you can hold them in your palm. Then picture a Surgical Fellow comes to insert a drain in your child’s stomach. Like a good surgeon he washes his hands and puts on his cap. Then he blows his nose and grabs the sterile equipment with his bare hands. Are you kidding me? Momma bear came out to play. The nurse said, "That's sterile! You've contaminated it." He said he didn't. So I said, "You just blew your nose and touched it with no gloves." I was told I had to sit down. Fortunately the equipment was replaced and they made him re-wash because "the mother was concerned." Thank you! But really, I shouldn't have been the only concerned party.

Time to swing back up.

The drain insertion went well. Things were looking better.

Roller coaster ride down.

I left the hospital with the thought that I may be called in. I called Reuben at midnight and he decided to make the long trek to Vancouver. Fortunately friends could watch the kids and by 3:30am Reuben had arrived. We both totally disintegrated. It was late, we were exhausted and David had such a long day.

My journal entry for November 9th wasn’t very long. It could be summed up by one scrawl on the lined paper: Exhaustion = constant.

November 11th is Remembrance Day, a day much like Thanksgiving in my mind because it's a time to be thankful for so much of what we have: Our freedom, a safe country and people who have and still are keeping Canada that way. Vancouver felt very solemn.

On this day I wrote about how not being able to touch David regularly created anxiety because when you see your child in pain all you want to do is scoop them up into your arms. We were at least 2 weeks away from any holding. The date was drawing near though!! Plus, I learnt that our little man surpassed his birth weight.

Reuben was getting ready to head in for a visit (I was at dinner with the kids) when over the loudspeaker the nurse calls out, "Doctor to bed 4, STAT." That's David's bed! In runs a doctor. Reuben tries to enter the NICU and he's stopped. He's not allowed in. Ahhh. What? Why? Shortly after a nurse comes out and explains that David had pulled out his breathing tube. It would take 30 minutes to put it back in and Reuben couldn't go in until it was reinserted. Reuben texted me and I almost vomited. He told me to stay at dinner because I wouldn't be allowed in anyways. Every fibre of my being was urging me to go back but I allowed the kids to finish dinner before we returned. That was a brutal 40 minutes. Poor Reuben was shaking and itching to go in and see with his eyes that our baby was okay. After an agonizing 30 minutes Reuben was allowed to enter the NICU and speak with the doctors and nurses. The reintubation was successful and David did great. That was the best text I've ever received. I returned with the kids and we saw little David sleeping with his new tube. The nurses took a picture of David without his tubes. This was the 1st time Reuben and the kids had seen his whole face. A nice little memento.

There is something about being in a bleak place in your life where you can identify the positives that remain. Maybe, in comparison to all the negatives the positives seem magnified. Because on this day, after we had spent weeks in a state of fear and exhaustion, with the NICU rollercoaster lurching up and down, I spent time thinking of others and all they gave us during our stay. I sat taking in the last 5 minutes of my visit with David before Reuben and I switched duties, and I couldn’t help but think of how difficult it must be for everyone around us. All those who supported us made a sacrifice to do so. Whether it was with their time or their money they didn’t get the benefit of seeing David for themselves on a regular basis (or at all). I know so many sat and waited for news about his health status. Waiting must have be awful. In their own little way all of my prayer warriors, childcare helpers, food makers and monetary providers, created an environment where David had the time and money to get better. You helped to heal him and our family. You were and still are appreciated!!! I cannot thank those people enough. I remain exceedingly grateful. Much love from us to you. Your sacrifices made you my heroes. May god bless you and look on you favourably for all that you did without any expectation of anything in return. I love you all!!!