Friday, November 6, 2015

Trying to Find Your Voice in the NICU: A Mother's Story

I am so honoured to have received this recount of a precious new mother's experience after the premature birth of her son.  I will refer to her as Anne.

Anne's quest for healing after her disempowering experience in the NICU led her to write out her story as an exercise in personal process.  She has generously agreed to allow me to share it.

As a doula, I am rarely allowed in the NICUs in my town. The odd times I am, all I can do is offer support. Parents don't have time to read books I might recommend on evidence based care, and they are not something people generally choose to read in pregnancy, as rarely do people expect, nor should go around fearing the possibility of having a premature or sick baby.  I am not a medical expert.  What I do with every contact I have is say, "You are doing amazingly.  Be strong about saying you'll be holding and breastfeeding your baby as much as possible.  It will be better when you get home."

I can only bolster parents' trust in their own instincts. encourage a lot of question asking in the hopes they will receive correct information, provide information on the benefits of Kangaroo care, and listen heartbroken to the parental feelings of overwhelm and self-doubt.

Parents are so busy in the NICU and catching up on rest, that our communications are usually few and far between, their focus completely taken up by the care of their child and themselves.  As a doula, I make sure my communications are calm and as encouraging as possible.  The best healing I can bring is to love them up when they get home (where I am allowed to be with them as long as they wish, unlike in the NICU), and support them as they begin to reconnect to their fractured motherwit.

Even the fiercest and most knowledgeable of self-advocates may, at the mercy of postpartum hormones, exhaustion, fear for their baby's health, and perhaps even a sense of guilt about not wanting to seem ungrateful for the fact their baby is in loving, capable hands, be at risk for being completely railroaded by the environment.  It hurts when my role becomes more about emotional damage control than being able to do much practical support as I can in a birthing room. When I do have the opportunity to be in the NICU, I am treated as someone taking up too much space, and am often told impatiently that I can't be there much longer.

It is my wish all parents, health care providers, and doulas take away from Anne's and her partner's story the inspiration to  participate in the creation a more nourishing, correct information providing, and parent/baby-as-symbiotic-unit approach to caring for families spending time in the NICU.

Here is her story:

Trying to find your voice as a new parent in the NICU

Advocates for less medicalized births often talk about the dangers of the “cascade of interventions” when laboring in hospitals and they encourage pregnant women to be as informed as possible when deciding what they do or don’t want or need while birthing. I am a researcher by profession, and so when I was preparing to give birth to my first child, who was born this past September, I really heeded this call. I feel empowered when I am informed. My husband and I read books on pregnancy, birth and breastfeeding, among other topics, we hired a doula, we attended birth prep and baby care classes, I scoured literature reviews on baby health and safety issues, and as a result, we both felt relatively informed about the process that was about to unfold in front of us. We knew that there was no such thing as being “ready” to have a baby, but having spent so much time reading and listening and talking gave us a sense of the kinds of possibilities and issues that could arise during this huge life transition, and it felt good to feel like we were not going in blindly and like we had enough knowledge to be able to make decisions that were right for us when the time came.
The unfortunate catch-22 of preparing to have a child is that you will most need to feel educated and informed when things do not go as planned, and yet it is both not realistic and not healthy to prepare yourself for every little thing that can go wrong. Most writing that calls for less medicalization of moms and babies assumes a context in which everything goes relatively normally – it is often reiterated that healthy births are not “medical events”. But how can we maintain our agency and our dignity when they do become medical events? What I want to reflect on here is the difficulty of trying to be informed, advocate for yourself and make healthy choices for your newborn outside that “normal” context. When my water suddenly ruptured just a day shy of 35 weeks pregnant, I was prepared for the very easy and uneventful birth that followed. What I was not prepared for were the 2 weeks we spent in the NICU afterwards, and how we would struggle to make the right choices for our son in such a constrained and often enigmatic place. We had not done our research on caring for a preterm infant – why would you? And while our son received loving and attentive care during those two weeks and is now thriving, we found ourselves stressed out, disempowered and really struggled while he was there. It was an experience that really marked us and shaped our early days as parents, and one that I am struggling to let go of.
We often found ourselves invoking the “cascade of interventions” not when discussing my birth, but while trying to make sense of what was happening to us in the NICU. Our son was born at 35 weeks on the dot, screaming, for which I will always be grateful. A neonatology team was in the room and examined him within minutes of his birth. He was just shy of 5 lbs and they quickly declared him healthy and said they did not think he would need any time in the NICU. I had about four glorious hours of skin to skin with him before that opinion changed because he repeatedly flunked his blood sugar test. We consented to have him taken to the NICU to help sort out his hypoglycemia, and we were told that this was such a minor issue that we were looking at an overnight stay, at most.
I was wheeled into post-partum and a nurse gruffly gave me a breast pump and told me I was going to need to start pumping. Assuming that everything would go normally, I had never even looked at a breast pump before, nor did I know how to use one, much less all those “tricks” I know now to pump more effectively. I got very brief instructions and then warnings about keeping up with it or else I would mess up my milk supply. I visited our son in the NICU as soon as I had settled in, and I was truly moved by the kindness of the nurse who was gentle and reassuring as she completed his intake. But seeing him small, vulnerable, in an incubator and hooked up to monitors was heartbreaking. When the nurse wasn’t looking, I opened the incubator door and put my hand in to hold his little hand and touch his head. I felt like I was cheating. No one had thought to tell my husband or I, that first day, that we were actually allowed to hold our child and do skin to skin with him. It was only while texting about it with Lesley that she mentioned that NICUs always let their parents hold their babies except in the most dire circumstances, and so I worked up the nerve to ask. Those first hours I just stared at him in there and tried not to cry.
This was a running theme of our NICU experience – the strange feeling of needing to ask permission to care for your own child. It was two days before we would even change one of his diapers. Our son’s hypoglycemia cleared up within 24 hours and so we were excited to go home. However, the IV he had in got messed up and needed to be removed, so a nurse suggested putting in a gavage (feeding tube that goes through the nose) instead, as it would be less invasive and less prone to infection. We consented. They had made it seem like no big deal. What we did not know at the time was that NICU protocol almost everywhere is that once a baby has a gavage, they will not be released until they eat without it for 24 hours. And so while the issue that brought us to the NICU had disappeared, the gavage kept us there for two weeks. We were now there for feeding issues. No one thought to mention this change in medical concern. It would be days before we really understood why we were there.
This was another running theme of our time in the NICU; the lack of true informed consent. No one explained to us what it meant to put that tube in, and then we felt blindsided when we got stuck there like we did. Gavaging preemies is a really standard, common practice in NICUs; there was no reason not to explain to us the implications of going down that path. The absence of clear information was not for lack of trying on my part. For example, our son had a moderate/borderline severe case of jaundice, and I asked our attending resident some questions about how they were making the call whether or not to treat it for three days in a row before I finally got a reply that explained their decision and the risks and benefits that informed it, rather than just reiterating it. (If I remember correctly, that eventual reply actually came from the attending pediatrician.)
Our son’s new diagnosis was “prematurity”. There was nothing wrong with him; he was just young and struggled to stay awake long enough to eat. NICUs have very particular ways of measuring what that means. They do 8 feedings a day, every three hours, and they use the baby’s weight to determine a set amount of milk or formula the baby needs to be able to ingest at each meal. “Feeding on demand” was out the window. I had very little colostrum, which I now understand to be normal, so he was immediately started on formula to meet the quantity they had determined he needed. If we put him to the breast, which many nurses encouraged, whatever he got at it did not “count” as it could not be measured. Breastfeeding was therefore mostly for “practice” and to help with my supply, but he still needed to get a set quantity either by bottle or by gavage. If he fell asleep finishing a bottle, the rest would be gavaged. The NICU was very encouraging of breastfeeding, and yet the fact that you cannot quantify it the way you can a bottle meant that for all the breastfeeding tips I received, bottle-feeding had to be our focus. By the end of our stay I would feel guilty if I put him to the breast for a feed because I worried (incorrectly, it turns out, but this is what I was told) that it would wear him out for his subsequent bottle and we would get stuck there longer because of my stubborn insistence on breastfeeding.
I would pump at least every three hours in order to try and give him as much colostrum and then milk as possible. Those first few days, nurses kept asking me if my milk had come in yet – at one point a hospital lactation consultant told me that because it was day three after a vaginal birth, I should expect to be engorged within the next twelve hours. I watched the clock. It didn’t happen. I thought something was wrong with me. The doctor would do his rounds every morning, conferring with nurses and residents within earshot of me and my son in the incubator, talking about us in the third person. “How’s mother’s milk?” he would ask, and they would always answer that I had a weak supply. The first few days, my son actually hated the formula and refused to drink from it (we had much more success getting him to drink pumped milk from a bottle); with my supposed weak supply, I felt like I was failing him and keeping us in there. What no one told me, until a kind doctor on one of our very last days there, was that my supply was weak because we were there, and that most women experience supply issues when they are in the NICU, because they are stressed, and are only allowed to put their babies to the breast a few times a day, and because the pump is not as effective as a baby at dictating how much milk to produce.
I heard a million comments over those two weeks, which were innocuous in their intentions, along the lines of, “wow, you don’t have a lot of milk, do you?” Never say something like that to a post-partum mom. I held back tears every time. Those comments crushed me. I wish I had known that it was just because I was there. I saw so many mothers who, by the end of their stay in the NICU, had given up on breastfeeding, quite understandably; pumping 8-10 times a day only to produce inadequate milk is brutal. It felt like the hardest thing I had ever done. I would set my alarm at night to pump and every time I woke up I would feel disoriented, wondering where my baby was, and sadly trudging to the pump instead. I had constant nightmares. It felt profoundly wrong, in this really primal way, to sleep and wake at night without my son there. When we came home it was such a pleasure to wake to a crying baby instead of the breast pump.
I do not debate that our son probably needed to be in the NICU. It would have been incredibly stressful trying to feed this small and sleepy baby all by ourselves at home. There is a decent chance we would have ended up there anyway. NICUs are amazing places that work very hard to care for often very vulnerable babies, and the nurses we encountered there, with literally only two exceptions over a two week span, were among the kindest, most caring people I have ever met. I cried while saying goodbye to them. They taught us how to care for our son; how to swaddle him, bathe him, burp him, and they were always encouraging and gentle with us. They are the most talented nurses I have ever encountered and they worked their asses off as NICUs in Montreal are painfully understaffed, often pulling doubles or giving up days off, coming back early from sick leave or taking on more babies at a time than they were supposed to. My son was in very good and loving hands and I think about them with enormous gratitude every day.
What made our time in the NICU so difficult was mostly not the individual caregivers (although I will mention a couple of exceptions below), but the larger structure of this place and how it worked. The nurses were kind, but the system itself was incredibly unkind. We ended up in two different NICUs; first, a huge high-level NICU for 5 days, which then (mercifully) transferred us to a lower-level one closer to home for the next ten days. The higher level one had 75 beds for babies, and only three courtesy rooms for the parents to sleep in, which we therefore had to fight for every day. Doctors talked about us in the third person, but spent little time talking to us. Our son was on such a strict schedule that we generally had to ask for permission to do things like take him out of his incubator. He was hooked up to heart and respiration monitors despite there being no concerns about his heart or lungs; it was just standard protocol to monitor him. This might seem like a little thing, but he was talented at ripping the monitors off (our little rebel!) and so they would constantly malfunction and the beeping frayed our already damaged nerves. And on a less avoidable note, it was brutal experiencing that post-partum hormone crash in a place as frenzied as a high-level NICU. There were sick babies, harried parents and alarms going off everywhere, and we all felt very keenly how fragile all these little lives were. It is just a really hard place to be. Between sick babies and crazy hormones, I realize now that I was probably the most emotionally vulnerable I have ever been in my life during those two weeks, and I therefore had to navigate all of the issues I am describing here feeling like a walking open wound.
Experiencing all of this is especially brutal when it feels like a machine that is much bigger than you, where there is more action than information. Like the example of when they put in my son’s gavage or monitored my son’s jaundice, informed consent was hard to come by. Despite this standard 24-hour feeding rule, every day in our first NICU they made it seem like we might be going home imminently. They told us they did not want to make any “predictions” that would give us false hope, and so all we ever heard was “at least until tomorrow.” We ran ourselves ragged and therefore didn’t really sleep for 5 days thinking that this was a very short-term stay. When we arrived in the second, lower-level NICU, a kind pediatrician, in his initial assessment, told us, “you will be here for a maximum of ten more days.” I just about burst into tears, as that was so much longer than we had expected, but we were so, so grateful to have someone give us an idea of what was to come, rather than being evasive. His assessment was prophetic as it was exactly ten days later that we went home.
While most nurses were truly gifted caregivers doing their best in impossible circumstances, we nevertheless felt very vulnerable when it came to the couple we encountered who were not. One nurse that we had over two nights described herself as “old school” and told us she did not believe in skin to skin or bonding, nor did she know anything (nor really care) about breastfeeding. Our baby was a medical problem to solve, not to snuggle. She made my husband feel particularly unwelcome visiting our son at night, and so we eventually stayed away as much as possible while she was around in order to avoid conflict. We realized that there were two approaches to caring for babies in the NICU; one that saw only the babies as the patients, and another that saw the whole family as part of the caring process. I know now that all medical evidence about newborns shows that they and their parents are basically one entity in the early months, and that their health is inseparable. Nurses like this one, who believed that their only responsibility was to the baby, were going against pretty much all current research.
It was during his first night with this nurse that my son began to have bradycardias, which is a brief deceleration of the heart caused by his still-developing nervous system. We were repeatedly assured by all medical staff that these were harmless unless they started occurring extremely frequently, yet they somehow made a big deal of them every time one happened anyway, such that they felt terrifying. It becomes hard to assert yourself when you are terrified. What I did not know until I did some reading once we got home was that the best cure for bradycardias is “kangaroo care”, i.e. extended skin to skin contact between mother and baby. After our terrible first night with this nurse, which left me sobbing on the phone with my mother, I kept saying that it could not be a coincidence that this problem had cropped up with such an unkind caregiver. I now know just how right I was. Her “old school” approach actively impeded his development. And yet when the doctors did their rounds, all they noted was the bradycardias, without reflecting on where they came from or the context in which they occurred.
While that was the most extreme example, we still found ourselves at the mercy of nurses’ and doctors’ often subjective opinions. In our second NICU, there were signs at every incubator encouraging skin-to-skin contact. My husband and I would spend about 16 hours a day there, holding our son as much as we could, trying to make a place as weird as the NICU as normal as possible during those formative first days of his life. During one exhausted night towards the end of our stay, a nurse got fed up with how much we held him, and told us our son would rest better in the incubator. Sheepish, we put him back in the incubator and prepared to leave for the night, but I wanted him to fall asleep first. He lay there, eyes open, hiccupping, unable to fall asleep as well as he did in our arms, for about an hour, while I held back tear. I put my hand into the incubator and lay it on his head, afraid to touch him more because we had just been chastised. He looked tiny and alone and I cried the whole way home.
The next day we asked the attending pediatrician about this, who of course confirmed that the nurse was wrong, and that in fact babies rest better through skin to skin than through an incubator, which is a machine trying to simulate that environment. She said that as he was a healthy baby who just needed some time to grow, “TLC” was all we could really do for him at this point. This helped us feel more brave about insisting on holding him (and at least this NICU allowed us to hold him without permission, although we still needed their OK to feed him), although certain nurses then viewed us as “difficult”.
Similarly, when it came to feeding, some nurses would come over beforehand and discuss with us our options for the next feeding – should we try breast, bottle, gavage, or what kind of combination of these methods? They trusted that even though they were the medical professionals, we also knew our baby as we spent all day with him, and could read his cues regarding how awake and hungry he was at any given feeding. Others would come over and tell us, without asking our input, that X method was best for the next feeding, in particular treating me as difficult if I insisted on trying even five minutes at the breast beforehand. I was once chastised for taking my baby out of his incubator when he woke up hungry a bit ahead of schedule and putting him to the breast, figuring that it couldn’t hurt to do so while we waited for the nurse to prepare his bottle anyway. Watching my baby root around because he woke up 15 minutes ahead of schedule and not being allowed to feed him seemed counter to any common sense about how to help a baby whose principal health concern was his ability to eat.
The very same doctor mentioned above eventually let us in on the secret of the NICU, at least when it comes to things like helping preemies develop and learn to eat independently, rather than treating specific illnesses that one sees in more serious cases; as she put it, “it is not an exact science”. Frustrated by the gavage, which I worried left my son so full that he did not feel enough hunger to work on his feeding, and by the different approaches of the nurses to feeding him such that our experience seemed to depend so much on the individual opinions of whatever nurse was assigned to us on a given day, she admitted that the process is very much subjective. She also said that the obsession with him ingesting particular quantities was not evidence-based nor actually particularly essential – they could tell if he was eating enough the same way all parents of full-term babies do, through diapers and weight gain – but rather it was a liability issue, i.e. to have numbers on record to prove that the hospital had fed a baby enough in case anything happened. So my stress about not pumping enough, the formula, the dictatorial schedule with bottles all the same amount - that was less about what was necessary and more about making sure we couldn’t sue them were anything to go wrong.
Our son got amazing, attentive care in the NICU. But we were not prepared to navigate its procedures, because who prepares to spend two weeks in the hospital with a premature baby? After we were released, I read up about kangaroo care for premature infants, about best practices suggesting that the parents care for the baby as much as possible, about how to encourage breastfeeding, etc., and I could see all the questions we could have asked and all the places where we were not given the opportunity for informed consent (either in terms of information or in terms of consenting). We got very, very lucky when our son was discharged, because we happened to have a nurse that day who really cared about breastfeeding, and faxed in a referral for us for a breastfeeding clinic as well as asking the doctor to give me a prescription for domperidone to help get my supply up. I am not sure I would still be breastfeeding were it not for her encouragement and those resources she pointed me to. People like her helped us survive.
Nevertheless, adjusting to home life after such a quantified experience of infant care was rough. We were so happy to be home, away from the sound of beeping monitors and able to feed and snuggle our baby whenever we wanted. But as I texted to Lesley in the immediate days afterwards, I felt like my “mother’s intuition” was broken. We were used to looking at a monitor to make sure our son was breathing, rather than looking at him (and trusting that he was probably breathing). We had no idea how to wean him off the bottle to encourage him to take the breast. It took me a couple of weeks to believe that he was getting any milk at the breast at all. He did not know how to feed on demand. All is well now, but it took a full five weeks to get back fully breastfeeding, and to emerge from the path that the NICU had started us on.
Advocates for less medicalized birthing and more natural parenting spend a lot of time talking about “evidence-based” practices and the tendency of large institutions to move slowly when adapting to research and to be very conservative for reasons often more related to liability and convenience rather than actual need. The NICU is, of course, a very “medicalized” space by necessity, as it should be when it comes to healing sick babies. But I should point out that parents of sicker babies than ours probably need the transparency and compassion we ached for even more than we did. Having had the experience of trying to care for a healthy, just undercooked, baby in the NICU, it is so hard to find the balance between the medical and the, well, normal. It is clear he needed help learning how to eat, for example. But the way in which he was given a gavage was confounding; not only was there no informed consent, as I explained above, but it also felt like they had created the problem (baby is being fed by tube) that we now had to fix, which due to their systems, required a bottle. In short, it felt like they broke him in order to fix him. In reflecting on our experience, I have spent a lot of time thinking about what more humane care for premature babies would look like – it is obvious, for example, that it would involve babies rooming in with parents and more real breastfeeding support (rather than mere encouragement that it is a good idea) and less obsession with the quantitative. It would allow for feeding on demand and parents doing most of the care of their babies themselves. All of these things, however, could not work in hospitals concerned with liability issues and would require infinitely more resources; how could feeding on demand work with busy nurses’ schedules? And how could there possibly be enough rooms to allow parents to room in with babies? And so for all my hard feelings about my experience, I get why NICUs are the way they are; we are kind of stuck in the system that we have.
And so I am left with this question of how parents can apply the ethos of gentle, informed and respectful birthing practices to medicalized environments like the NICU. We were so ready for birth and yet so blindsided by what came after. How can you maintain your agency as a parent and your right to care for your child when you find yourselves unexpectedly hospitalized? And why is this experience staying with me like it is? Life is great now; our son is healthy and, if you ask me, perfect. And yet I still find myself thinking back to those early nights, full of hormones, waiting to be given permission to hold my son, trying to remind myself to look at him to see how he was doing rather than at the monitor. Why was this experience so destabilizing?

I am simultaneously so grateful to the NICU for caring for him and getting us through his prematurity and yet angry that we were often left out of the decisions made about his care, and allowed so little room to maneuver within that larger system. It is hard to balance that gratefulness and that anger. I might feel differently had he been truly ill, but we were in the strange position of having a totally healthy child and yet having his care really quantified and medicalized nonetheless. This was hard to negotiate and impossible to prepare for. What I am left with is the same wish that many birthing advocates have for laboring mothers; more transparency, more information, more concern with giving parents agency and helping them make empowered decisions about their babies. Even when things do not go as planned and we find ourselves requiring medical intervention, it does not mean the process needs to be so unkind and opaque. I wish I knew then what I know now about caring for premature infants, but surely I shouldn’t have needed to have prepared myself with mountains of research to have had a more humane experience. Humanity in such stressful situations should be the norm.