Have you ever been to a prison, university or massive office building for the first time and felt surprised by all the goings-on inside? It’s astonishing to see how everything works together even though there are all these separate pieces working independently. Hospitals are like that too. The neonatal intensive care unit at BC Women’s hospital is completely this way. You just don’t know what goes on in there unless you have lived it. It leaves you in awe. It’s also a bit disconcerting that there is a small world within our world that goes on functioning without the majority of the population even knowing it exists. It’s hard to fully fathom what it’s like until you have had the misfortune of finding yourself relying on this system you know nothing about; relying on strangers to save your baby.
So much of what I journaled during those days in the NICU were to keep in contact with the people who were far away and wanting updates on David’s progress. It was also a way to ensure I never forgot what happened. Mostly, I used it as catharsis. I vented on some days, others it was pure information and facts but sometimes I was extremely vulnerable with how the NICU was impacting our family. My journey with David continues on in this way.
November 13th I was thinking about how tiny David was. I guess the best way to get an idea of his size, at that time, is to put your hands together like you’re going to cup some water. David would easily fit in your hands. His weight, at this point, was just over 1 pound which is equivalent to a 16oz bottle of Coke. But David, regardless of size, was always feisty. He kicked and squirmed while, at the same time, he "handled" very well. Handling was what the medical staff called it when they touched or moved a baby around - something they tried to do as little as possible.
On November 14th I started writing down the bible verses people sent me and then I read them to David. It was therapeutic for me to write them all out. I received many messages, especially the first two days following David's birth. Three different people sent me or quoted one bible verse in particular: Psalm 121. As a result, I wrote it out and posted it by David's bedside. Some of the staff members read it. There were some who read the whole thing and others just a few words.
It sounds weird but some of the nurses were so easy to trust while others made me VERY nervous. Not every nurse had worked with a baby David's size. Some of the nurses we had, had never worked with a 24 weeker. They looked nervous which made me nervous, so I watched them like a hawk which probably only made them more nervous!
Two incidents in a 36 hour time frame were a stark reminder of the reality of the NICU. I was in the pump room talking to a mother of twin boys. We got to discussing our journeys and she was the most positive lady I'd met there. Then she unloaded a bomb. One of her twin boys died on day 19. Oh my word! I nearly keeled over. Talking about her loss took the wind out of my sails. That poor lady. Devastating is the only thing I could think of. Her other son remained in the level 3 NICU waiting to grow so he could have surgery. The fear she must have felt for that little boy. Then to add to it, I was talking to a doctor who was from the East room (we were in the West). She had come over because she'd heard of little David and she wanted to see him for herself. I said I had heard a 23 weeker came in but was 600 grams (125 more than David). I was shocked a baby that young could already be that big. She said I was correct but unfortunately that little girl was no longer with us. Oh sweet little angel. That poor family! Uhhhhh. The doctor said it wasn’t about the size, it was about the gestation. Even one or two days could make a huge difference. Wow, was I ever thankful to have made it to 24 weeks! Then she said, "Plus, David is a fighter, he's strong"....that made me so proud of my little munchkin.
I did it, I pumped 8 times in one day. It's way harder than it sounds because when you breastfeed, your baby lets you know when they're ready. With pumping you have to set your timer and go when alerted. Plus, it's way more time consuming. First, you have to set the pump up, then pump, then you label the bottles and wash all the pump equipment. This is not conducive to sleeping at all! With my first three children I had so much milk I could have fed an army of babies. This time I had a measly trickle. There was a specific room for all those who wished to pump. It’s filled with breast pumps all set up in a row. It felt rather bovine-ish when I would go in there. So I nicknamed the pump room the “barn.” When you pump in the barn you usually sit and chat with the other ladies pumping beside you. I often got "booby juice," envy. Booby juice was the affectionate term for breast milk all them women used. Ladies were filling 2-4 plus bottles at a go. I, on the other hand, was lucky to fill half a bottle. Sigh. I heard the earlier you deliver the harder it is for your body to figure out it should be producing milk. Plus, sleep deprivation, poor nutrition and stress all reduce your milk supply. They say don't stress out. But I would stress out about not stressing out!
I learned over time that the barn was a therapeutic dumping ground of emotions. You sat by another woman and shared your story. Speaking about your experience and hearing the similarities of your shared situations made one feel normal in a place that was anything but. On that dreary November day, I spoke with a beautiful woman with a caring smile. Her baby likely saved her life. During a routine pregnancy exam her doctors discovered she had a cancerous tumor. Whoa!!! They delivered him early to save her life. He was doing well, thankfully. She spent her days between the NICU and the cancer ward where she received radiation and chemo daily. She lost her hair but she took her wig and hat off. I loved that about her.
Where does time go? In my journal I wrote, “I can barely believe we've been here for so long. Is this even my life?” A month prior, I would have never thought I'd be living in Vancouver spending my days watching over a tiny little baby. Low and behold, there I was!
A few nurses told me that I should go back to Kamloops for a week or two. I couldn’t imagine not being there. They said, "You just sit here."
Yeah, I know! I realized what I was doing. Plus they said, "He's not going anywhere. You know he's going to have ups and downs."
I realized that too. I knew I was there more for myself than for him. I wasn’t there because I'd been mandated to be or because I thought that's what good mothers did. I just felt I should be there. I wanted to be there! I liked knowing what was going on throughout the day. Maybe people thought I was crazy but that's just how I felt. I know some thought it would be better for the older kids because they were going to remember this and David wouldn’t. Agreed. I just knew I'd be home in body but not in mind. How could I not worry myself into the ground? I wasn’t trying to justify this to myself. I guess I was just working it all out.
An unfortunate side effect of David’s previous ART line removal was they took his blood by heel pokes. He only had one foot available because the other foot had a PICC line. That poor little foot looked like he stepped on a porcupine. Poor bubba. On that day he was particularly chapped with the whole procedure. He was crying. He made no sound but you could tell by his face he was crying. Broke my heart. I quickly washed my hands and stuck them in and covered his head and upper body. The whole blood collection took 5-10 minutes. Within less than a minute David was fast asleep. Sweet little honey. Makes me glad to be here.
The team came to do the echo and it was heartbreaking to watch. David really didn't like it and he cried and cried. I put my hands over his head and held his hands and tried to comfort him. That was a torturous 10 minutes as I watched him through my fingers as he silently cried. Imagine your child screaming and crying through a glass window. That's what it looked like. Awful. I stayed with him after the procedure until he fell asleep. I stepped out so I could have a follow-up medical appointment of my own. When I returned 30 minutes later his bed was surrounded by nurses, a doctor and a respiratory therapist. His ventilation tube had come out. Again. They needed to re-intubate him, meaning I had to step out. I went to pump and impatiently wait. When I returned his tube was back in. They were amazed at how well he tolerated the procedure. They said he just laid there while it was done. Such a good boy.
Unfortunately, more bad news was to follow. While they were intubating him his drain fell out. Ugh. I wish that was the worst of the news. His echo results came back and the hole had reopened. This meant he'd have surgery to close the duct. The surgery he needed was called a PDA ligation. It's supposed to be a routine procedure but it was scary because he was so tiny...and it was on his heart...and he was mine!
I went for a coffee and sat and wept waiting for my order. All those knowing eyes staring at you wondering why you, too, are in tears.
I held on to the belief that David would go through many procedures and tests and come out fine on the other side. But I felt so sorry for him. I think the hardest thing for any parent is to watch their child suffer. It's just not fair.
Two great things happened on that day. The first was that Reuben was able to touch David for the first time!!! He comforted him during blood work and also did his mouth care.
The second was a short exchange I caught between a lady and a young girl walking down the hall.
Little Girl: "Mom, why are there so many kids in this place?"
Mom: "Because this is where all the really sick kids come to see doctors."
Little Girl: "Why do they bring them to this hospital?"
Mom: "Because they can make miracles here."
I loved that!!
The NICU is a microcosm. You just don’t know what it’s like unless you’ve been there. The first days are typically a blur. You are learning a new routine as a newbie. All the handwashing, visiting protocols, the names of the staff and nearby families but mostly, you are loving a critically ill newborn. Before long, you look up and see a NICU regular moving to the intermediate nursery or even home. It’s exciting to see babies moving up!! Then, all of a sudden, as if the passage of time doesn’t register while in the confines of hospital walls, your baby become a NICU veteran. Kind of odd to be a vet when you’re only one pound!