In the NICU - Week 1

May 25 

When I joined Keith and Beckett in the NICU a little while later, the NICU nurses were connecting Beckett to an aEEG to monitor his brain waves. The doctors were deciding whether Beckett met the criteria for cooling (currently the only treatment for hypoxic ischemic encephalopothy), and we were told this decision would be made quickly, since the treatment had to start within 6 hours of birth if it were to happen at all. The NICU staff suggested we both go to the postpartum ward to get some rest since we had been up for well over 24 hours and the EEG would take time to set up. 

When we returned to the NICU, not at all rested, we were told that Beckett did not meet the criteria for cooling. Something about his cord blood test results. To this day, I still wonder if cooling would have helped him in his initial recovery. But as with much of Beckett’s and our story, there’s not a lot of point in thinking about the “what ifs” and the “whys”. We could only move forward. 

Later that day, when I was back in the postpartum ward figuring out how to use the hospital grade breast pump, Keith came back from the NICU and told me that Beckett had had a seizure, and that he had been given phenobarbitol to prevent further seizures. He had spoken with the Neurologist from the Alberta Children's Hospital (ACH) and they were planning on getting an MRI done later that day to look at Beckett’s brain. They were also going to do a lumbar puncture to test for any significant infections like meningitis.

We went to the NICU as the transport team was bundling Beckett up into the MRI baby burrito for the first time. I honestly have no idea what time of day it was by that point, it’s all a blur. I do know we didn’t get any opportunities to hold him, or kiss him, or do all the regular new parent things. Also of note, Beckett still hadn’t had a first poop, which at this point wasn’t concerning to any of the NICU staff. 

Returning to the postpartum ward brought out a lot of emotions, some of which were surprising to me: jealousy and resentment. You hear all the fresh healthy babies crying in the rooms down the hall. You see a newborn snug safely in its car seat going home for the first time. I think it’s impossible to not feel mad, sad, and jealous when your  situation is in such stark contrast. It was impossible for me anyway. Not only was my baby not next to me and crying in the ward, he had not, and was not crying in his isolette in the NICU. 

May 26 

The next morning, I was discharged from the postpartum unit. I have many negative things to say about my experience and care in the postpartum unit, but perhaps that is better suited as a strongly worded letter to Alberta Health Services (AHS). I had spent most of the night rotating between visiting the NICU and pumping in my room with no real success. Keith had gone home to sleep in a real bed.

Keith and I went to the NICU first thing in the morning to see Beckett and ask for any updates, to promptly overhear at the front desk that “bed 35 is being transferred to the children’s hospital right away”… Beckett, being the baby in bed 35, we were a little surprised to not have been told this ourselves. We took the opportunity to both go home and shower while the transfer was being completed. 

When we arrived at the ACH shortly after, we were met by the neurologist and directed to a private room for an update with herself, the neonatologist, the fellow, the charge nurse, and the social worker for the NICU. We were told that the MRI results showed damage to both sides of his brain near or at the thalamus and centre capsule. These areas of the brain are normally responsible for motor control functions. This confirmed the doctors suspected diagnosis of hypoxic ischemic encephalopathy. They couldn’t offer a prognosis. It could mean anything from: Beckett will have a full recovery, to Beckett will be in a wheelchair unable to eat or speak. “Wait and see”.  We’d hear that quite often in our foreseeable future.

Beckett remained generally unresponsive. When I say he was unresponsive, I mean that he didn’t do anything you would expect a newborn to do. No crying, no squeaking or squawking, no fidgeting, no noise at all. No way to know if he was hungry or in pain. To us, as adults who project our fears onto babies (as we were told all parents do), we were scared by two possibilities (among many other fears): that Beckett was feeling hungry or was in pain or scared or confused, but was trapped in a body that could not communicate those feelings to us; or, that Beckett didn’t have anything going on inside his sweet little head - that he was ‘brain dead’. No one could tell us for sure if those fears reflected reality or not.

Hypoxic ischemic encephalopathy. Hypoxic. Ischemic. Encephalopathy. These words would repeat over and over in my head for the first few days like a broken record. I don’t know why they wouldn’t leave my brain. I think I wanted to make sure I could say those big scary words confidently, without hesitation, since the big scary thing they were describing would impact all of our lives, probably forever. Of course, most health care professionals just call it HIE, sometimes just hypoxia, rarely the full thing. But I can say all three words now.

Keith and I were happy that Beckett had been transferred to ACH. In the ACH NICU, he had his own private room, which made things a bit easier for us. On the night of the 26th, Beckett was still connected to the EEG for monitoring. He was mostly unresponsive to any stimuli; whether this was because of the HIE or the phenobarbital wasn’t clear.

The doctors decided to start feeding him via nasogastric (NG) tube. Within the first day of feeding, they used up all of the colostrum I had collected over 3+ weeks of colostrum collection in the tail end of my pregnancy. I continued to pump with the hope that my milk would come in, and with the dream that Beckett would soon be recovering and able to breastfeed. Keith and I made the decision that we should both go home together in the evenings to eat and to rest as best we could.

The concept of postpartum recovery is honestly laughable when you are in the NICU constantly on your feet, adrenaline fuelling your body. Most of the day I was on my feet, walking from the car, to the NICU, between the shared family space, and Beckett's room past the scrub station. Back and forth. That first week, my ankles were incredibly swollen. We weren't allowed to eat in his room, so I was definitely not nourishing my body the way a new mom is supposed to. We had to leave the scrubbed area to use the washroom, so I was also not drinking as much water as should have been, since it seemed like an inconvenience that wasn't worth facing too many times throughout the day. All things peri-care being done in a public washroom was also not ideal - I'll spare you any specific details.

By the end of the day, Beckett was still connected to an EEG, which meant we still couldn’t hold him, and Beckett still hadn’t had the first meconium poop that most parents are told to dread, that we were now starting to worry would never actually come.  

May 27

Our baby prep classes had told us for the first 3 nights with a newborn would be sleepless, with baby feeding endlessly while your milk hasn’t come in yet. No one tells you what it’s like to have to wake up by an alarm every 3 hours to pump, while your baby is in a hospital, still not having made a single cry. I’m not saying it’s more exhausting than the norm, but I can confidently say that the emotional toll is higher. I sat pumping every three hours throughout the night and cried. Feeling motivated to wake up and pump with very little results is difficult when there isn’t a newborn crying to get you up. 

I remember getting up in the morning on the 27th and making my way downstairs to get ready to go to the hospital. Half way down the stairs I broke down and cried like I never have before. Keith came downstairs and we cried together, so extremely uncertain of what our future as a family would look like. Even though I use these same stairs many times every day, that spot of the house brings back the memory of the extreme turmoil I felt in that moment, probably daily.  

When we arrived at the hospital, they had just removed the EEG leads from Becketts head, since the neurology team was satisfied with the amount of time that had lapsed since his last seizure, with no signs of any other seizures. We had a meeting scheduled with the doctors later that morning, but we had a small window of time when I was able to hold him. He was of course still connected to monitors, oxygen, and an IV, so we were only 3 ft away from his isolette, but to be able to hold him was a happy moment.

I wish it didn’t feel so rushed between the strict pumping schedule I was being encouraged to follow, and the scheduled updates with the medical team. I’m not sure I soaked in the moment like I truly should have. That was true for most days in the NICU - the constant feeling like your baby isn’t really yours to enjoy. Other people are doing the majority of the care (at least the care that is keeping him alive), you need help even picking him up the first few times so that you don’t pull out any IV lines or mess with the monitors. When you finally get a chance for some skin to skin contact (which everyone encourages), the doctors come around for rounds, or a nurse comes in to change lines or check his vitals or alarms start beeping, and a moment that should be tender and private becomes scary and public. 

On the 27th, Beckett was moved to a better room, one with a window and a view of the mountains. This was mostly nice for me and Keith. Beckett was still very unresponsive, likely due to the phenobarbital still in his system.

He had an amazing nurse on the 27th, who was so kind and very experienced. I wish just for this instance I was able to tell you what her name and to praise her, but I promised that I wouldn’t name anyone. Beckett had multiple episodes throughout the day where he would hold his breath and his heart rate would drop. It was terrifying to hear the alarms go off and watch the doctors and nurses run to his side ready to start resuscitation. At the end of the day, the fellow was talking about putting Beckett on a bi-pap to help him with his breathing. As NICU parents, you have to trust the doctors to make the best call. However, his nurse intervened (in a completely respectable and polite way) and recommended that they simply increase the flow of oxygen that Beckett was receiving to 6 lpm, at least as a more gentle starting point, to stimulate his breathing. By the end of the day, that’s what happened. I’m happy to report after the fact that Beckett never needed the intervention of a bi-pap, and I’m so grateful to the nurse that was assigned to him that day. It was this nurse who told us about one of our more happy experiences and cherished ‘souvenirs’ from the ACH NICU - the Beads of Courage program, and also the brave hearts that Beckett and I would wear and exchange on a daily basis. 

May 28

We started the day off with another private meeting with the doctors. The neurologist we saw that day said that Beckett’s HIE was likely moderate (as opposed to mild or severe), and that they were going to do a follow up MRI the following day to confirm if any other parts of the brain were impacted. The neurologist also said that the fact that Beckett hadn’t cried, or sucked, and had some breathing episodes indicated some injury to the brain stem that controls those automatic responses. He said in all likelihood the brain stem would heal with time and he would gain these abilities.

One thing I wanted to know was when and how they thought the HIE occurred. Based on Becketts APGAR score and his cord blood levels, the neurologist believes the assault to the brain occurred the day before labour, or early on in labour. It is a question we’ll never have an answer to. I was assured that even with continuous fetal monitoring, they likely wouldn’t have been able to detect it or stop it from happening. I suppose that was a comfort, although I couldn’t help but wonder what I missed and how I could have prevented this from happening. 

On the 28th, Keith and I both got to do some skin to skin cuddling with Beckett for the first time. My milk started to come in, which was a relief - and a bit of a miracle since I didn’t pump for quite a few hours after giving birth. He had been getting some donated breast milk to supplement the very small volumes I had been pumping up to this point. Shout out to anyone who has ever donated breastmilk - it’s such an amazing resource for NICU babies and their parents. 

Beckett met his Grammy and Pepere, and Grandma and Grandpa for the first time that day. He didn’t have any more breathing episodes, and was still on 6 lpm of oxygen. Still no poopies, but the nurse said she was hearing lots of belly noises so she expected there to be one big one soon. Keith and I went home that night feeling a bit more optimistic.

May 29

When we arrived at the NICU in the morning, there was a swarm of nurses and doctors outside and inside of Beckett's room. The charge nurse told me that there were two things going on: they were trying to give Beckett a glycerin suppository as they were now very concerned that he hadn’t had a poop yet and his belly was getting round; and they were deciding whether or not to put in a PICC line, since most IV sites had already been used. I was told the decision on proceeding with a PICC line or not would depend on how long the doctors thought Beckett might remain in the NICU and require IV fluids. 

I watched from the corner of the room as multiple nurses tried to put a suppository up Beckett's little bum with no luck. The poor little baby, still not crying or really reacting to anything. No one was able to actually get the glycerin into his bum. The nurse shined a flash light on Beckett's bulging belly and could see air pockets in his intestines. The neonatologist told me she was concerned he may have an obstruction, or possibly a twist in his intestines and that they were calling for general surgery to come have a look, and they were also ordering an abdominal x-ray, which would be done in his room. 

The arrival of the general surgeon was an important moment for us, though we didn’t know it then. The Dr. - who, again, is so worthy of praise and recognition and we both wish we could say her name here because she is amazing - came into B’s room while we were both out (possibly with another meeting with the neonatologist giving us an update on the situation) and when we arrived back in the room, we were met with this confident, cheery professional standing at the foot of Beckett’s isolette looking straight up his bum.  She explained to us that she suspected he had an anal fistula, which could explain why he hadn’t pooped yet - because the colon either constricted too severely before the anus, or it was not aligned correctly with the anus. She said she was going to attempt to stick a tiny rod up his bum to dilate the constricted colon if possible or to see if the colon was indeed placed correctly. She also noticed that I was in a state, crying in the corner of the room, and said "don't worry, we make new bum holes all the time, if it comes to that!". Despite the distress I felt in that moment, that particular comment, and the confidence this doctor had made me smile and laugh a bit. Within a few minutes, she was able to get the dilator into the colon and eventually they were able to get him to poop! 

Given the new complication, the NICU team decided to put in a PICC line. This took a few hours and by the time we went home that night, we hadn't been able to hold Beckett, as he had been surrounded by medical professionals all day.

By that point, it was becoming clear that Keith and I have very different ways of process the vast amount of medical information we were getting on a daily basis. Keith went into "student" mode, determined to learn as much as possible to be able to ask all of the right questions. I tended to shut down quite a bit, in a lot of cases crying. Both perfectly valid ways of dealing with the situation.

May 30

In hindsight, May 30th was fairly uneventful - a good thing when your little one is in the NICU. 

Beckett didn't have any further breathing issues, and was pooping with pretty much every diaper change. There was still air being blown into his nose at a rate of 6 lpm, but at this point it was just room air for stimulation, there was no added oxygen. He had another x-ray of his belly and it looked good (no blockage or significant air building up).  

On May 30, Beckett's phenobarbital fog seemed to start lifting. He was starting to be active and he felt less floppy when we held him. His eyes were more open and alert, and they were beautiful.

We met with the general surgeon again, and confirmed that Beckett would need surgery to fix his anorectal malformation (ARM). She was hoping that she could do the surgery the next week while he was in the hospital, but was planning a meeting with the neurologist and neonatologist to make sure there were no concerns from their point of view. From our perspective, it made sense to get the inevitable surgery done and over with while he was already under the care of the NICU. The surgeon also mentioned that they were going to get some other tests done to confirm that they'd found all potential issues that are sometimes found along with an ARM (if you're interested in going done a Google rabbit hole, look up VACTREL syndrome - that's what they were looking for). Of note, he had an echo done on his heart, and that showed nothing concerning - that felt like the first good test result of any kind that we had gotten since Beckett was born. The x-rays that had been taken showed that B's sacrum did not form quite right (sacral agenesis), and we were told this may result in a tethered spinal cord. His kidney's were going to be looked at with an ultrasound the next day.

In the afternoon, we were taught how to do Beckett's anal dilations/dilatations that were required twice a day in order for him to be able to continue to poop. This is definitely not in any variety of "what to expect" book or website that you'll come across. A necessary, but uncomfortable thing that we'd have to do for months to come. 

May 31

Another good day, overall. We met with a geneticist to discuss testing for genetic mutations that may have caused his ARM and the sacral agenesis, and possible renal concerns. They would take a blood sample and send it off for analysis. Results would take a while to reach us, since the testing was done in Finland (I think).

The ultrasound on his abdomen showed dilation of both his kidneys and ureters. We had known about his right kidney and ureter dilation prior to his birth, since it was identified in my post due-date scans, so this news wasn't a huge blow - we were ready for it. 

Beckett's eyes were more alert and he was more active when he was awake. He definitely seemed more comfortable now that he was pooping ("stooling" as the nurses and docs referred to it as). Both Keith and I got some cuddling in during the day. Beckett was still getting all of his food through the NG, and was not showing any sucking reflex, and he had not made any significant noises, although he was sort of cooing during cuddles.

June 1

We arrived at the NICU in the morning to find Beckett in a crib! He had graduated from the isolette, at least for now, which was good progress. We were told that the nurse during the night shift had given Beckett some tummy time and that he tolerated it well. 

We met the nephrologist (kidney doctor) to review the ultrasound results. She believed that it was possible that the hydronephrosis could be a result of the ARM. The build up of poop in his intestines could have essentially been causing a partial blockage and backup in the urinary tract as well. This could have started in utero since our post-date scans also showed that his intestines were starting to fill up with meconium. The hope was that the hydronephrosis would clear on its own. The doctor's plan of attack was to do a repeat ultrasound, and would keep B on antibiotics to prevent a UTI or kidney infection.

We met with the general surgeon, neonatologist, and neurologist, and they all agreed that it made sense to complete the required anorectoplasty surgery while B was still in the NICU. They pencilled it in for Tuesday, June 6. The neonatologist and neurologist both indicated that B would be in the NICU for a few more weeks due to his delays from HIE. They could not estimate how many weeks. The neonatologist said that after the surgery, they would shift the focus to advancing his oral feeding skills, but that it was very likely that he would be coming home with the NG for feeds.

By the end of the day, Beckett had a smaller oxygen tube, and the air flow was down to 1 lpm! The nurse was optimistic that the respiratory therapists would switch him to just room air tomorrow. He looked very tired, but was moving a bit more than the previous day. He was also watching and taking in his surroundings a bit, which was lovely to see. 

Grammy and Pepere (my parents) came for another visit, and both got to hold Beckett for the first time. 

At this point in time, we were realizing that the grandparents' visits should be staggered to different days, so that it didn't take up a full visiting day at the NICU for Keith and I. Since the ACH NICU only allowed 2 people in a room at a time, it meant either Keith or I had to be in the common area for a decent chunk of time while the other was in the room with one of our parents. While I know that it was great for the grandparents to visit and bond with Beckett, the honest truth is that I went home on most visiting days feeling like I got less time with Beckett than I needed, especially considering all the additional interruptions to the day by medical staff (necessary of course, but disruptive nonetheless). In hindsight, I wish Keith and I had prioritized our bonding with Beckett in the NICU, and limited grandparent visits a bit more.