Day 2, Sunday of Week 1
Sunday dawned, and Jacob was now turning 2 days old. I drove up to the hospital in the morning, hung out for Rounds, started our normal routine. Hold, change, feed, rest, eat, repeat. Jacob still had the oxygen prongs, feeding tube, and the IV in his head. Every time they reattached it, they had to shave his head a bit — what they call the NICU haircut. The IV had quickly gone to the top of things we hated the look of the most. But we were beginning to cope and adjust. Andrea’s parents were still around, and her sister Becky arrived. She had been away on the delivery day, and so was excited to come see her nephew for the first time.
We were starting to notice the room a bit more now, other people going in and out. We were encouraged to respect other people’s privacy as much as possible, but when they’re having a conversation five feet from you, it’s hard not to overhear. We nodded to a woman we had seen the previous two days, who looked like an undercover nurse — she was looking after one baby, but wasn’t wearing the uniform. This turned out to be accurate — she was Abigail’s mom, and worked as a nurse at the hospital. She had been visiting her daughter in the NICU for 12 weeks. The duration was stunning. We were hoping for 1-2 weeks, and they had been there for 12 already. Abby’s mom was a pro — changing the leads, adjusting wires and setup, etc. She asked permission first, but the other nurses were okay to let her do her thing. She’d been there awhile and they all knew her, even if they hadn’t known her before in the hospital.
It appeared there were four big rooms in the NICU — the first was where Jacob had started, a heavily medical room with big flourescent lights, and large incubators with lots of other machines hooked to them. Plus the big door for wheeling babies out to surgical rooms, etc. for emergencies. He was now in room 2, which still had a couple of large incubators (fully enclosed) but also a few warming incubators (glass bassinets). Rooms 3 and 4 appeared to be mainly for the small bassinet incubators.
Late in the afternoon, the doctors asked to speak with us, never a great sign. Jacob was still struggling with his breathing, and the extra air in the wall of his right lung was still impeding it from full inflation. They wanted to do another pneumothorax procedure on this right lung area, see if they could help. We agreed, and Andrea again asked if we could be there for it. This time the Fellow told us no, and while she pitched it in different terms, she basically said it would make the person performing the procedure too nervous. We waited in a little nursing room next to Room 1 while they did it…four or five times they stuck the pin in, but couldn’t hit the pocket of air, which made it a good thing we didn’t watch. They chose a backup plan of an oxygen tent overnight to promote osmosis — somehow, and I didn’t exactly understand the physics, the oxygen would cause the air to pass through the membranes more easily and hopefully drain. I understand osmosis, I didn’t understand this technique, but I didn’t have to. Oxygen tent it was.
Around 7:30, the NICU had a new patient, and we learned about another ring of hell, just beyond ours. The deeper rings were evident, with babies far sicker than Jacob. But we overheard the doctors explaining to new parents that their baby would have to be in the NICU for several weeks at least, probably five or six, having been born at week 33 or so. Except the ring of hell was that the couple were not from Ottawa. They lived several hours away and the baby had been transported by air ambulance to the closest Level 3 nursery with a bed available, which was Ottawa. They said they already knew that they would be here for awhile, had found a hotel, etc.
It had only been two days, and I was exhausted physically, mentally, emotionally already. And I lived in the city, could sleep in my own bed, make breakfast in my own kitchen. My only extra expense was parking, really. Andrea and I would think about this couple a few times in the coming weeks, wondering how they were managing. Their baby ended up either in another room or transferred elsewhere, but we didn’t see them more than once or twice more.
Day 3, Monday of Week 1
We were present for morning rounds on the Monday. It looked both like rounds you see in TV shows and equally, nothing like it. The head of the unit led the rounds, and parents were allowed to be present for the discussion of their baby only. We were first up, so logistics were relatively easy. The Fellow we had seen most of the weekend gave an overview of Jacob’s issues. Pneumothorax, once successful, once not. Oxygen tent. Broken clavicle. Asymmetry. IV. Feeding tube. Mom pumping and the introduction of breast milk had been going well, but volume was not up yet. Would try latching soon. Club foot was not actually club foot. (Wait, what? What club foot? What the hell was she talking about?) Oxygen overnight had worked well, just on lowest level for prongs now, just a wisp to keep it blowing. An ophthalmology consult had been requested, but eyes appeared clear in one eye, possible small cataract in the other.
While it all seemed very clinical and professional, it also seemed very normal. Calming. The chief of the unit said that it appeared Jacob was doing pretty well (yes!), and the oxygen tent had worked its magic (double yes!). As such, she said, she thought they could discontinue the oxygen.
As soon as she said it, Jacob reached up and pulled the prongs from his nose, something he hadn’t done in the previous couple of days. It was like he heard her say it, and thought, “All right! Done with THAT thing!” and pulled them out.
The chief then turned to us and asked if we had any questions. I had close to a million, but we limited ourselves to three.
First, what about this club foot thing? No one had mentioned a possible club foot to us. Or if they did, we hadn’t heard it. His feet looked like normal feet to me. Apparently, Jacob’s right foot had been turned a bit when he came out, and his toes were crunched up. But they decided it had just been positioning. Nothing to worry about. Easy for them to say, now that I knew there was a possibility they were considering things we didn’t even know about.
Second, we asked about the oxygen, respiration, etc., any long term issues we needed to know about? In short, they wouldn’t know. There wouldn’t be any complications from the pneumothorax or the oxygen tent, but most preemies have lung issues because they aren’t fully formed and ready to breathe on their own normally, hence the steroid injections at week 26. Jacob had done well though, and he had breathed the entire time on his own without mechanical help. That didn’t mean any thing of significance to us particularly but would become important a few months later.
Third, we asked about feeding. Andrea was pumping, and the supply was building up. How soon should we try breastfeeding? The response was that we could try immediately, but Jacob would tell us if he was ready. The asymmetry in his mouth and jaw might present problems. In addition, he had a feeding tube and an IV — he was in no nutritional risk, but volume would be a challenge to increase. We would try soon, and the nurses would help.
I knew that there were sometimes problems with people being able to breastfeed. Most of the time, I had heard it was a production problem. I had never even heard about asymmetry issues. But his swelling was going down, so I thought that it would be a non-issue. I had a healthy dose of my mother’s genes when it came to denial, I guess, but I was enjoying two things.
First, the oxygen prongs were out. One less tether to deal with. Second, Jacob had ripped out the prongs right on cue. My son, the jokester. Reminded me of something my Dad would have done. It was a light moment, and we hadn’t had enough of those recently.
The other big news for the day was that Andrea was being discharged from the hospital. While it wasn’t a happy occasion in that Jacob wouldn’t be coming with us, nor was she totally “ready” physically (she was still quite sore and getting in and out of a Honda Civic with low seats was not a lot of fun), it was nice for me to have someone at home at night and a relief that the doctors felt she was well enough to discharge.
It also marked the point at which we would now be practically joined at the hip for the next two weeks. We got up together, commuted to the hospital together, hung out with Jacob together all day, went on breaks together when nurses were changing shifts, drove home together, went to bed together. While some of it was a bit maddening too, we were leaning on each other throughout to just survive the day.
Sometime that day, we figured out a home pumping option for Andrea because she would have to pump when she was at home too, mimicking the feeding times. Andrea’s sister had loaned us one, but it was a single unit, and everybody recommended a double pump just for efficiency. She could still use the ones at the hospital when she was there, but hopefully Jacob would latch soon and it would be all good.
Day 4, Tuesday of Week 1
The fourth day was a light day. I think Andrea’s parents headed back home, a helpful nurse gave us a small bottle and some tips to help get Jacob’s volume up. We were feeding him for the first time ourselves without any help getting set up nor were we being monitored. The swelling had gone down quite a bit, but he still had his NICU haircut, and there were still things in his head. I shared a couple of photos with family and friends. Very carefully chosen photos, sent only by email to a small group. None of the scary NICU stuff, mostly just the ones of Andrea holding Jacob for the first time.
I also gave a silent thank you to the parking gods. Lots of bureaucracies set up insane parking rules to gouge you when you’re trapped, and it looked initially like the hospital was the same. $13 a day was possible, depending on how we scheduled our visits. It was going to add up, but it was a sunk cost basically. No choice. Except the hospital had a choice — you could buy a weekly pass for about the cost of 3 single days, or a monthly for the cost of just over two weeks. And they let me use my existing receipts to “convert” my cost so far and roll it into a multi-day pass. I got a week to start, and then later rolled it to a second week plus a day. An oddly human experience.
Day 5, Wednesday of Week 1
The fifth day was a fun day. Jacob was doing well on just about everything. Getting stronger, more movement, more things being detached. And we got to put him in his first jumper, green with frogs and turtles on it. It was a small challenge to figure out how to get it on with all the wires running everywhere, but the nurses helped. Jacob’s feeding volume was increasing, but not enough. It was his main issue remaining. It was frustrating. What we were doing wrong? Was it just us? Were we bad parents?
Day 6, Thursday of Week 1
Jacob had a new weigh-in, 5 lbs, 15 ounces, which worried me at first but the nurses said he was doing well. All babies lose a bit in the first few days, and even more so for NICU babies apparently. In fact, they were so pleased with his progress, it was time for another two mini-milestones:
- Jacob graduated from the fully enclosed incubator to a warming basket bed!
- His feeding tube came out! He wasn’t able to breast feed yet, but he was relatively tether-free!
Day 7, Friday of Week 1
Today was the start of our real frustration with feeding. At this point, Jacob’s only real issue was getting his feeding volume up. The nurses had been able to get him to take the regular bottle, but Andrea and I had not. He could take it, but not very efficiently. At first, I thought this was just a minor issue — so it took us longer than the nurses, big deal. But it was. Not because it was longer than the nurses but because Jacob had to work so hard for too long to feed — at the 30 minute mark, approximately, the effort required to feed was more than he was getting in nutrition from the feed. The required volume had to be consumed in under 30 minutes or he was not getting enough to grow and thrive.
He hadn’t been able to latch at the breast, and a consult was arranged with a lactation consultant from CHEO, Ms. E. I confess, up until now, I thought lactation consultants were basically new age, holistic, granola loving, hippie types. Which some of them are. Not E. She was the regular medical professional, coming in for a consult. Latching was not going to be a quick fix, it was going to take some trial and error to get it right over time. Not what we wanted to hear. Jacob needed to feed now, not later. Even if the nurses were able to feed him from the bottle, we hadn’t been successful. Again, our failure, not Jacob’s. We adjusted angles, we adjusted how we held him, nothing seemed to make much difference. We just couldn’t get the volume in.
E had another solution. Had we heard of a Haberman feeder? Like most people, we had not. Most people know what a standard baby bottle nipple looks like, pretty straightforward. A small hole in the tip. If you turn it upside down, it will drip. Slowly, but it will drip.
We learned this is not a good thing for certain babies. If they have cleft palates, or in Jacob’s case, asymmetry in his jaw and mouth, they have trouble sucking. At the breast in particular but also just on normal baby bottle nipples. Plus, they often can’t handle the volume of milk just dripping into their mouths (when you suck on a regular baby bottle nipple, you get a lot of flow, often too much for asymmetrical mouths to handle).
The Haberman feeder is named after Mandy Haberman, a mom whose daughter was born with a cleft palate. Out of necessity, she used her engineering skills to invent a new type of nipple. It is more elongated than a normal nipple, and has three parts. At the end, the nipple is a bit longer than a typical nipple. Just above it is a reservoir for milk to go into as a staging area. And a valve which creates a zero flow chamber between the main bottle and the nipple.
If you tip it up, it won’t drip — it will only let milk out when the baby sucks on it, and only in proportion to how hard they suck. The baby controls how much it gets automatically. If they suck weakly, they get a small amount, enough to feed and to handle without overwhelming them. If they get stronger, they get more. In addition, the valve has a small gravity component, so that the parent can rotate the bottle slightly clockwise or counter-clockwise — there are five settings for how much flow will go through when they suck. It’s brilliant. And works well for anyone with an atypical mouth configuration. I’d nominate Mandy Haberman for sainthood if I could, as most hospitals around the world would do too if they deal with feeding issues.
We tried one with Jacob and he took to it like a new duck to water. Not an expert paddler, but functional. This was it, this would be our working solution, I thought, and I grabbed it like the lifeline it was. A challenge would be that while the nipples were completely reusable, they had to be sterilized between feedings. Something the hospital was not equipped to handle. So I came up with the obvious solution. We would take them home and wash them, and bring them back the next day. And so I would buy two sets, enough to get through the current day and then while I was taking the others home, they could use the second set. On day three, I’d swap them. Seemed like a perfect solution to me.
E cautioned my enthusiasm. The feeders were going to be expensive, she said. I started thinking in terms of hundreds of dollars. But if it was what Jacob needed, so be it. Then she told me it could be almost a hundred ($90, I think), and I laughed. I felt guilty, as for some people that would be a significant sum, and while I get that, the reality was that while we might have challenges elsewhere, financial resources was not one of them. If it had been a couple of thousand, we still would have paid it. I bought them immediately, including extras. We had a plan. I felt confident that we, the bad parents that couldn’t feed their child, would be able to master the new feeder and get it done.
Day 8, Saturday of Week 1
Andrea and I had success initially with the new Haberman feeders. We could get Jacob to take the full amount in less than 30 minutes, and we started to think there was a light at the end of the tunnel. If Jacob’s sole remaining challenge was feeding, and we could now feed him, we might be able to take him home. Jacob had also reached another milestone. He was now a floater baby.
Have I explained floater babies? In the NICU, there was a common baby to nurse ratio — I’m not exactly sure of the numbers as it seemed to fluctuate between 5:1, 3:1, and 1:1 for different types of serious levels of care. But in the 3:1 and 5:1 scenarios, where one nurse looks after multiple babies, they give them a couple of more serious ones and then a baby with lighter needs. Floater babies that could “float” between nurses because they didn’t require a lot of intervention and monitoring. Jacob was now tether-free, eating from the bottle, regular warming bassinet. He could now float between nurses to help even out the workload. Initially it sounds scary, and then you realize — this is a good thing.
Today was also the day they could do the consult with the Eye Institute. The mechanics of the consult were giving them some logistics issues. The ophthalmologist was busy, couldn’t come to the NICU, could they bring the baby over to the Eye Institute attached to the hospital? Jacob was tether free, so basically yes. Just wheel his incubator bed over. We thought about just carrying him, but the nurses weren’t keen on that scenario, probably for insurance reasons. They wanted two nurses to go, but were short-staffed — Andrea and I volunteered to assist with the transport and Jacob was on the move!
The consult was difficult. They basically have eye clamps that they use to force the baby’s eyes open so that the baby can be held/restrained while the ophthalmologist can look in their eyes for extended periods of time without the eye closing etc. It doesn’t hurt the baby, but it wasn’t a lot of fun for him either. He cried. Screamed really. He did not enjoy it. And Andrea did part of it, while I waited outside, then we switched around a little bit as the drops cleared. We couldn’t both be in there with the doctor and the nurse at the same time, too small a space, and I was secretly relieved. While this was possibly old hat to Andrea, I found it emotionally taxing.
The end result was that the NICU people had not been able to properly view the cataracts — Jacob had congenital bilateral cataracts (congenital = present at birth, and often hereditary but not necessarily; bilateral = both eyes; and cataracts = small opaque growths that grow in between the layer of the eye and the lens, blocking light from getting to the back of the eye). This was relatively expected, and while a complicating issue, something I felt we were prepared for with Andrea’s own experiences. Sure, we hoped they wouldn’t be present, but not a blow. The positive news with it too was that they were small and no surgery was recommended yet. Dr. O would see us in a month and see if there was any change, but for now, light was still getting through, Jacob was developing fine, see you in 30 days.
Mostly I was just excited that he was “well enough” to leave the NICU, even if only for a few hours. He was tired though when he got back and slept through his next feed.
Day 9, Sunday of Week 2
Sunday was another milestone. Jacob had jaundice. Which meant that they put Jacob in a bed where he could be bathed in UV light. And you know what? I was a bit giddy. Sounds ridiculous to say, but Jacob getting jaundice was a relief to me. Hey, look, my kid has something normal to deal with. Lots of kids get jaundice, easily addressed in most cases. I was not thrilled with the look and feel of the UV bed setup, but at least this was something relatively simple to deal with. Something other parents we knew had dealt with.
And with Jacob now officially a floater baby, Andrea’s and my role as parents started to change — we were now doing almost all the feeds, except the one overnight (when we were at home). The volume was increasing, and we felt more involved, more responsible and less “assisting” to the nurses. I also started to realize there was a bit of a dull silver lining to the NICU. Andrea was still sore, but was having a bit of time to heal before Jacob was full time at home. Equally, we were gradually “phased in” to looking after him during the stay. Don’t get me wrong, we hated the NICU and wanted to leave immediately, but we took our silver linings where we could find them.
We also realized as we started our second week that the NICU’s range of stories was huge, and ours was relatively benign. Sure, the obvious issues abound — there were lots of babies in far more serious conditions than ours or who had been there longer. Some babies who would never even get to leave the NICU. Ever.
But as we spent almost the whole time there the previous week, we saw a simple series of human stories that affected us more — babies that appeared (to us at least) to have no visitors all week. In some cases, it was because Mom was at home looking after other kids and didn’t have the resources or support to leave them to come to the hospital. In other cases, the baby had been in the NICU so long, the parents had no vacation or sick leave left and were already back to work. Some couldn’t afford the time or the trip to Ottawa to see their baby. I can’t even imagine those choices, although for them, they weren’t even choices.
I felt horrible not being able to take Jacob home with us each night, and saying good night was so draining…what would I have done if I had to say good night knowing I might not be back for a week? Or two?
Day 10, Monday of Week 2
We hit a small wall with Jacob’s feeding. As his volume increased over a certain level, he started refluxing. Again our frustration mounted. The simplest task, feeding your child, was beyond us. We thought we had the knack, and then it would not work the next time. Tips, tricks, voodoo, downward dog, we were willing to try anything.
The Haberman feeders are supposed to limit the flow which in turn limits the likelihood of reflux, so we went into full mode for nipple washing, etc. I had bought enough to get us through two full days, and I was willing to buy more, if necessary. The nurses figured we could reuse each one once, so no extras were needed. But the reflux was worrisome.
Our light at the end of the tunnel, which we hoped silently might be Tuesday or Wednesday, grew dim and then disappeared all together. We would have to get the reflux under control before he could leave. Some of the nurses were still using regular nipples, but I was willing to defer to their experience. It struck me as odd though that very few of them had ever used a Haberman feeder. Jacob could not have been the first with feeding issues, and the hospital doesn’t stock them (hence why I bought them myself and distributed them for use for Jacob). Andrea was still pumping as best she could with our messed up schedule, and trying to get Jacob to latch, but the primary working short-term solution was the Haberman feeder.
In the middle of it all, we got a small reprieve, an attempt at normalcy. Jacob’s first book. I was planning to read to him every night, a lofty goal that would be impossible to keep. But it was fun. Jacob seemed to like the feel of the book more than my reading however.
Day 11, Tuesday of Week 2
We got through a successful day of feeding. Jacob still had reflux, but maybe if everything cleared, maybe we could think about Thursday or the weekend to take him home. Be still, our hopeful hearts.
Day 12, Wednesday of Week 2
Cocooning set in sometimes this week. We were entirely beholden to the routine of going to see Jacob. No phone calls, no outreach, nothing. Our world existed entirely within our own little NICU cocoon. None of our friends had been through the NICU, at least not that we knew of, we were adrift in our isolation and in many ways, our sense of loneliness. Each day was another reminder that we were farther and farther away from the simple birth plan we had hoped for, dreamed of, conceived of (pun intended), where we would take Jacob home the same day or kangaroo care would start within five minutes of birth, along with breastfeeding and simple worries about diaper changes and 2 a.m. feedings.
When we went for lunch that day, a bit lost in our own world, we saw Abigail’s mom getting lunch too. We hadn’t spoken to her much, but she seemed a little down. We found out that they had been talking about sending Abigail home soon, letting her graduate from the NICU. Maybe by the weekend. But Abby had had a blip overnight, a little spell in which her monitors went haywire and the nursing staff had to intervene to help her breathe. The clock was on hold again, reset to maybe start again in a week. They wanted a week with no blips first. We had nothing to offer her but vague sympathy, her experiences way beyond our own. But she was a trooper, as they say. This wasn’t the first setback, the first delay, the first blip. I both admired her composure and dreaded becoming so experienced.
Sometimes reality just sucked.
Day 13, Thursday of Week 2
Jacob had a blip overnight. More reflux. I also noted that there were plenty of unused Haberman nipples from the day before — the nurse overnight had used a regular nipple, and Jacob refluxed. I wasn’t a happy camper, but I also knew I couldn’t let myself rip anyone a new one. A helpful nurse, one of our favorites, told us it wasn’t considered a serious blip (i.e. not like Abigail’s), just a bump on the road, and Jacob was still in line for Saturday graduation. It was hard to believe it might be real.
Day 14, Friday of Week 2
The story hadn’t changed overnight, same routine. More of us taking care of Jacob and less by the nurses. We were on track for graduation the next day.
Day 15, Saturday of Week 2
We arrived at the NICU just after 9:00. Jacob was not in the usual spot, and the nurses made us go back to the reception to find out where he was today. Something we had not had to do in the two weeks previous. Jacob had been moved to Room 4. We found our way to the new room, dreading the change, before realizing that Room 4 was actually the “easy room”. Most of the babies in here were easy-care infants, the floater babies ready to leave. One set of twins was in the room, sharing an incubator and they were beyond tiny. I am not sad that we didn’t learn their full story, as multiple birth babies often have low success rates in NICUs.
Our focus was only on Jacob though. The helpful nurse told us in passing that Jacob had had another blip in the night, and I found multiple unused Haberman feeders again nearby. The night nurse had not followed our instructions to only use Haberman feeders, even though it was clearly marked on the chart and underlined. We had made them inscribe it that way two days before.
I was ready to blow. Today was to be our day. Jacob was ready to come home. And I vowed that if we didn’t get to take him home because the nurse I didn’t like hadn’t read the freaking chart, and had made him reflux because of it, somebody’s head was going to roll.
The helpful nurse came back. I think she sensed that I was pissed, partly because I asked through clenched teeth if the blip during the night would prevent Jacob from being discharged. She assured us, “Oh no, he’s great. Good to go. Just need the Resident in charge to sign him out.”
Exhale. Inhale. Exhale. Inhale. I had to tell myself that mantra repeatedly while I waited for the discharge. Once the release was signed, Andrea and I made a beeline for the door. No tearful, hugging goodbyes. No lingering reminisces. Out the door, down the hall, on the elevator. There was a Walmart ad that was running on the TV about that time of year where the person leaves the store, sees how little they were charged on the receipt, and yells to their partner, “Start the car!”. To make as fast a getaway as possible. That was Andrea and I. The nurse gave us a couple of sheets and a gift blanket to take with us, but we were gone like a shot from a cannon. A friend had come over two weeks earlier to install the car seat for us, so that was ready.
We drove home and took pictures of ourselves carrying Jacob across the threshold.
And then decompressed holding him in our arms. No nurses. No wires. No monitors. Just the three of us.
Andrea’s parents were back up, staying with her sister, and came by for a visit to see their grandson. To hold him this time. To cuddle, snuggle, hug, kiss. To enjoy their grandson. To sit on a comfy couch or chair while they did so.
Later that day, we realized we were still wearing the bracelets from the NICU, the ones with Jacob’s ID number on it. We had a small ceremony just Andrea and I after we put him to bed. We cut the bracelets.
We were free. We could re-enter the land of new parents everywhere. And just be. At home. With Jacob.