Saga's NICU stay was full of ups and downs, full of two-steps-forward-one-step-back experiences. I have mentioned some of them briefly on Facebook along the way, but didn't feel I could write a true second chapter in her saga until I knew how it (the second chapter, not the whole saga) was going to end. In the course of her ten weeks of life, she has already come through two brain surgeries, cared for by many, many compassionate professionals: nurses, neonatologists, neurosurgeons, medical residents, lactation consultants, occupational therapists, social workers, and nurse practitioners, not to mention ultrasound and X-ray technicians, who brought their equipment, on wheels, right up to the baby's bedside.
Nurses ranged from new nurses in training all the way up to veterans with more than 30 years of NICU experience. There was even a travel nurse from Mississippi who worked here for three months and is moving on soon to her next assignment in Arkansas. And during that whole time, only one of the nurses who took care of Saga was male - I guess it takes an especially well-developed sense of masculinity to work not only as a male nurse, but a male nurse working with premature babies and new mothers. Good for him!
Aside from her two surgeries, Saga had three distinct goals she needed to meet in order to graduate from the NICU:
- She needed to take all her feedings by mouth rather than nasogastric tube,
- be gaining about an ounce a day, and
- be able to maintain her body temperature without the aid of the incubator.
From the start, Saga was good at gaining weight. Once she was able to take food in her stomach rather than just IV nutrition, she started with gavage (stomach tube) feedings of 2 milliliters of my breast milk every two hours. These numbers were adjusted many times, to where she was receiving feedings every three hours for better digestion, and eventually up to 50 milliliters at a time.
When she reached 34 weeks' gestational age, the lactation consultant said we could go ahead and try nursing directly from the breast. Saga was a champ and impressed everyone by taking 13 milliliters by mouth at this first official feeding. She did so well, in fact, that they immediately scheduled her to receive two feedings a day by breast - at 11 a.m. and 8 p.m., respectively. Of course this meant that I had to drive to the NICU twice a day to supply the necessary equipment. Whatever amount she took by mouth was supplemented by gavage - so if the target was 30 ml, and she nursed 14, then the nurses would warm up 16 ml of pumped breast milk and give it to her through her stomach tube. On top of the normal amount of calories in the milk, they mixed in a "fortifier" that added extra calories, which she needed due to her prematurity.
After about three weeks, the schedule was raised to three feedings a day - at 8 a.m., 2 p.m., and 8 p.m. It was best to let her rest her sucking muscles in between, so the in-between times at 11 a.m. and 5 p.m. (and through the night) were gavage only. There were some triumphs, like when she set a "new record" of, say, 24 ml taken by breast for the first time, and tribulations, as when she took maybe only 6 ml at the very next breastfeeding. A lot of times I felt like I had to coax her from sleep to get her to eat. I did this pretty frantically, because I kept worrying that if she didn't keep increasing her breastfeedings, she would never be ready to come home. Then I felt bad, because it seemed I was encouraging my daughter, at such a young age, to have negative associations with eating, rather than positive ones.
There was a set protocol for each feeding: take baby's temperature, change her diaper, weigh her (in grams), feed her, then weigh her again. I learned how to detach Saga from her heart rate and blood oxygenation monitors when it was time to put her on the scale; more than once, nurses joked with me along the lines of, "You're hired!" By subtracting the pre-feeding weight from the post-feeding weight, you could find out how many milliliters of breastmilk she had drunk (owing to the convenient fact that 1 ml of fluid volume weighs 1 gram). Pounds and ounces ("pounces") seem so silly in comparison, but every day the nurses also updated her weight in pounds and ounces on a calendar, so we could see the overall trajectory of her growth.
So feedings continued apace, but then there was the issue of getting Saga to breathe often enough. When she was first born, she was on a supplement (via IV) of caffeine citrate, which was to keep her from sleeping too much and give her enough energy to breathe. On the caffeine (yes, these habits form so early!), she went from being on a ventilator, to getting a certain percentage of oxygen flow from a nasal cannula, to getting room air via the nasal cannula - just a very low pressure little puff of air every now and then, to remind her to breathe, but she was doing the breathing all on her own. Then they removed the cannula, and we got some very pretty pictures of her with nothing taped to her face except for her nasogastric tube.
But then they weaned her off the caffeine citrate, which took about 5 days to leave her body entirely, and once it did, she was too sleepy to breathe on her own anymore. Her monitors kept beeping because her blood oxygen saturation was too low - this is called "having desaturations," or in NICU shorthand, "desatting." I swear, there is a whole nother vocabulary set you have to learn in order to understand what these NICU professionals are talking about.
So, after breathing on her own for a few weeks, she needed to go back on the nasal cannula (a case in point - Latin for "little reed," it's this plastic tubing with two prongs that go into each nostril). This was so disappointing at the time! I had gotten used to positioning her head for breastfeeding, and now I had to relearn how to do this around the oxygen tubing. It felt like such a step in the wrong direction. But the tradeoff was having her be too sleepy to breastfeed enough. What can you do?
Progressing on her third goal, keeping her body warm enough on her own power, Saga was getting ready to switch from an incubator (isolette) to a crib at the NICU. Like everything else, this was a few steps forward, a few steps back process. One weekend around the beginning of August, her core nurse made the switch, then had her closely monitored for the next 24 hours. If in those 24 hours Saga's temperature dipped too low too many times, she'd have to go back into the isolette. There was even a protocol for how much "help" she was allowed to have: she could wear a onesie, and socks, with pajamas over that, and have two warm blankets wrapped around her, no more. On that first try, Saga "failed" at maintaining her temperature in the crib, so back into the isolette she went. It must have been quite a culture shock for her, anyway - all the NICU alarms and beeps and cries of the other babies nearby were much louder for her to hear when she was "outside" in the crib. I think it was two weeks after that when she once again had a crib trial, this time successful.
Then there was that whole business with the neurosurgeon and the weekly head ultrasounds. Saga had had an intraventricular hemorrhage (brain bleed) at birth, and while the bleeding had long since stopped, it had caused scar tissue to form in the pathways that her cerebrospinal fluid was supposed to drain out of. This caused hydrocephalus, or "water on the brain," a condition which is lifelong, even though its symptoms can be treated. That's why she had to have her two surgeries.
Separately, she also had sustained damage to her actual brain tissue itself during the bleed. This brain damage is called "periventricular leukomalacia" (PVL), and we will have to watch Saga closely as she grows up, to see what, if any, effects it will have on her development. Outcomes vary from being able to lead a completely normal life to having full-on cerebral palsy, with intermittent points along the continuum (such as speech impediments and learning disorders) which remain to be detected when she is older. One thing in our favor is that Minnesota has excellent early childhood education services, which entitle us to have whatever specialists she needs, such as physical, occupational, or speech therapists, come to work with her at our home.
The cerebrospinal fluid that couldn't drain properly from Saga's brain needed an outlet so that it would not cause her brain ventricles to continue increasing in size, putting pressure on the brain. (The medical resident who was working on our case at the time used this word, "ventriculomegaly," that I thought was just fascinating, to describe the problem. A sixteen-letter, seven-syllable word, it has been confirmed by my brother to be completely impossible to make on a Scrabble board. It also uses all five vowels, and y, in the same word.) That's why she needed surgery: to give her a shunt, a valve that allows the fluid to escape, reducing the pressure.
Saga's case was actually so special that she got to have two different successive shunts - hence the two surgeries. The first, a subgaleal (temporary) shunt, was implanted in her brain on July 26th, and the second, a ventriculo-peritoneal (VP, permanent) shunt, was substituted for it on August 30th. The subgaleal shunt allowed the fluid to drain from inside her brain ventricles to the tissue outside the skull, where it could be harmlessly reabsorbed.
The neurosurgeon told us that in 90% of cases, children who received a subgaleal shunt would go on to need the other type. Why, then, didn't they just put in the VP shunt in the first place? At that time, Saga still weighed less than 5 pounds and was not well suited to tolerate the VP shunt right away. So why not just wait until she was bigger and put in the VP shunt then? The doctor explained that it was a race against time: the longer she waited for a shunt, the more her ventricles could enlarge in the meantime. So she needed the subgaleal shunt as a stop-gap measure. No matter how you looked at her case, there seemed to be no way to avoid going through two separate surgeries. So of course, wanting to minimize any further brain damage, we as parents consented to the first surgery, knowing there would probably be a second one to follow.
Saga came through her first surgery OK, though it did take her about 2 1/2 days till she was recovered from the anesthesia enough to breathe on her own again (meaning with the nasal cannula rather than the ventilator). My friend Jesse, whose twins had both undergone surgery that summer in the same NICU, told me I'd be amazed at her resiliency. And indeed, within a few days after the surgery, Saga was back to taking some of her feedings by mouth rather than stomach tube.
The thing about the weekly ultrasounds is that it strung us along and kept us hoping for something that didn't come to pass. Every Monday since birth, Saga had received head ultrasounds to measure the size of her ventricles. This info was corroborated with increases in her head circumference, a real double-edged sword. Of course we wanted her head circumference to grow, because it was part of her whole body getting bigger and stronger. But at the same time, if it increased too quickly, that could be a sign that the ventriculomegaly was worsening.
After every head ultrasound, we would be given the results; usually, we had to wait until Tuesday to get them back from the radiologist. And for weeks, the results were nothing but good: "Congratulations, her ventricles haven't enlarged again this week!" - leading us to think that maybe we'd be in the lucky 10% of cases where the brain heals itself and the second shunt isn't necessary. The longer this went on, the more hope we got. Meanwhile she was steadily improving her eating, breathing, and maintaining temperature - maybe she'd be ready to go home soon, if only she didn't require the second surgery.
So it felt like another sort of backslide when the neurosurgeon came back and said that just as predicted, she would indeed need a VP shunt, and why don't we schedule the surgery while she's still in the NICU, as opposed to waiting till she's gone home and then having her back in for outpatient surgery? That was hard for two parents and a sister eagerly awaiting her homecoming, but of course we agreed.
The VP shunt, a technology that has been around much longer than the subgaleal one, created a different outlet for the extra cerebrospinal fluid. Instead of diverting it into the outside of Saga's head between skull and skin, the VP shunt would direct the fluid all the way down into her abdomen, in the space between her organs, somewhere around the height of her intestines. The tube that goes into the abdomen has a spiral-shaped end, so that as Saga gets bigger, it can unscroll some of its length and "grow with" her.
VP shunts are designed for the long haul; but they do get clogged, infected, and have the capability of malfunctioning. So along with watching and waiting to see if Saga will be developmentally delayed from her PVL, we also get to watch for fevers, irritability, and other behavior changes that might indicate a doctor needs to go in and service her shunt. The doctor said she will be his patient, basically, for the rest of her life. She will need to go back regularly to the neurologist / neurosurgeon to make sure that the hardware in her body is working correctly. This would be in addition to her normal pediatric checkups. I have accepted this by now, but when he first said it to me, I cried.
Long story short (too late!), the second surgery went well from the perspective of the surgeon, but it took Saga twice as long as the previous time to recover from the anesthesia. That is, she had to be back on the ventilator for five days this time around. They tried extubating her to have her breathe on her own three times, but each time she was having too many desat(uration)s, so she had to be reintubated. Meanwhile, all of this was irritating her trachea, so they had to give her steroids to bring down the swelling from that.
I don't know how they do it in other NICUs or with adult patients, but at our NICU, breathing on a ventilator tube means having tape covering your mouth continuously. So for those five days, Saga couldn't take anything by mouth - either via breast or bottle - and was fed intravenously. When they tried reintroducing breastmilk through her stomach tube, she vomited, violently, repeatedly, right past the tube taped across her mouth. I was there to see it once or twice, and it was heartbreaking. I know it's irrational, but I started to fear that somehow she would never come home from the hospital or be able to breathe on her own.
It was disheartening because every day when we would arrive to visit, we'd anticipate her being off the vent(ilator), and every day when we walked into the nursery, we could see that she was still on it. It was actually eerie being around her, because she would sometimes feel pain, and you could tell by the grimace on her face or the contortion of her body, but she couldn't cry out loud during this period, because the vent tube was threaded directly between her vocal cords. Her body was also bloated with excess fluid from the surgery, which it took her a while to shed, so she was on diuretics for a while, too.
But by the fifth day out, Saga was much more awake and alert, and what's more, she was very visibly not amused to still have this vent tube down her throat. She was pulling on it so much that the nurses had to put socks over her little hands to stop her. Someone said it must be the steroids - they'd make any baby irritable. Whatever the reason, this time when she was extubated, she showed no trouble breathing, and even started tolerating feedings by mouth again.
I was called in to stay overnight at the hospital on three separate occasions to work on breastfeeding with Saga. The first time, I stayed for three days in a "boarding room" on the fifth floor, where many of the normal postpartum moms also stayed. The weirdest part was that in the middle of one night, a nurse tried to come in and take my vital signs, and I had to tell her, "I'm not a patient, I'm a boarder!"
The reason I had to stay overnight was that they were starting to let Saga dictate when her own feedings should be, rather than automatically waking her up and feeding her every three hours. So if Saga woke up at 2 a.m. wanting to nurse, the nurses could, and did, call my room and tell me to come down to the NICU (on the fourth floor). I needed to be on hand at any time; in fact, I started thinking of myself less as a person visiting the hospital than as a prescribed part of Saga's treatment, just like the caffeine or the iron supplements she got. Probably I would have been classified under occupational therapy; at any rate, it was the occupational therapists who taught Saga to drink breastmilk from a bottle.
For that Wednesday, Thursday, and Friday I faded into the woodwork at the hospital, eating in the cafeteria, breastpumping, and reading or watching DVDs or being on the computer in my room when I wasn't needed in the NICU. Erik and Cecily (and my dad, the relative whose turn it was to stay with us at that time) came to visit each evening, only now, in addition to visiting Saga, they got to see me, too, for an hour or so a day. By the weekend, I started to feel like I was bouncing off the walls in there, especially because Cecily complained so much of missing me, and Saga's surgery had been pushed from the following Monday to Thursday anyway. So I "busted out of the joint" for Saturday and Sunday, and was able to go to the State Fair with Cecily and my dad and brother, before returning to the hospital on Monday.
This second stay, however, they had a room available for me on the fourth floor, right inside the NICU. It was set up with exactly the same equipment Saga had at her bedside in Nursery 6, so that she could room in with me overnight, which made 2 a.m. feedings more doable. Protocol still had to be followed for each feeding, however: the temperature, the diaper change, the before-and-after weight. Saga had to meet a minimum volume of milk per 12-hour period, as determined by the doctors so that she would continue to gain, not lose, weight. If she didn't reach her quota by breast or bottle in each 12 hours, she would receive supplements by stomach tube.
At some point during the second stay, an optimistic nurse convinced me that Saga didn't need the stomach tube anymore to reach her quota, and removed it. But from one feeding to the next, it became obvious that Saga wasn't getting enough milk volume; the more pessimistic night nurse on that night commented, as she reinserted Saga's stomach tube, "I don't know why they push these babies to do so much when they are about to go into surgery anyway!"
The day of Saga's second surgery, I was sent home because I was no longer eligible for the room, since the anesthetized Saga couldn't nurse from me anymore. I took my dirty laundry home, unpacked, and was back in time for her surgery that afternoon, to keep vigil in the waiting room with Erik and Cecily until Saga returned from the operating room (on the third floor) and was wheeled back into Nursery 6 in the NICU.
In the ensuing five days of Saga breathing on the ventilator, I became more and more demoralized, wondering if and when I'd ever be able to breastfeed her again. But once she was extubated (on a Wednesday), the rest of her recovery proceeded very quickly: gavage feedings reintroduced on Thursday, successful bottle feedings on Friday morning, resulting in me being called back Friday afternoon to room in with her one last time, during which she easily exceeded her feeding quotas by mouth. This time the stomach tube was removed and stayed removed.
In our room that night, Saga also proved she could tolerate sitting in her carseat for 60 minutes without setting off her heart and breathing rate alarms - another prerequisite for her discharge from the NICU. Saturday seemed an interminable case of "hurry up and wait," as Saga and I (and the nurses, who were all rooting for us) waited for the doctors to come make their rounds and decide if she could go home that day or not. They finally came, agreed that she could, and then the nurses and I had to scurry to complete all the final procedures and paperwork. I drove Saga home around 7 p.m. and realized along the way that I hadn't eaten anything since breakfast, a muffin at 11 a.m. And the rest is history.
We could not have gotten through Saga's ten weeks' NICU stay without a lot of help from our family and friends, which mostly consisted of people taking care of Cecily for us while Erik went to work and I went to the hospital. My mom stayed overnight at our house for more than two weeks, making Cecily pancakes for breakfast every morning. My dad flew in from Germany, twice, to stay with us both before and after his previously-scheduled summer trip to his girlfriend's childhood home in France. Erik's mom also came for two weeks, from Idaho, where she left Erik's dad to take care of their three cats, one dog, and ten chickens. In between these various visits, Erik's sister, who lives in Minneapolis, came over almost every day to entertain and feed Cecily while I was still recovering physically from my own ordeal. Even my brother, who doesn't like to leave his normal routine in Madison, took the Megabus up here on two weekends in order to meet his second niece.
During this time, I also got hope, humor, and moral support from other NICU moms: chiefly my coworker Jesse, whose twin boys, born in April, had gone home from the NICU in July. What were the odds, when she started teaching Chinese at Patrick Henry High School (where I teach Japanese) the previous fall, that we would both, in the course of the school year/summer vacation, get pregnant and have premature babies that ended up staying in the very same NICU? I'm sure these experiences have tied us together for life - almost like soldiers who have been through combat together. Nobody who hasn't been there can ever quite understand how it felt.
As our ten weeks elapsed, I saw a lot of other NICU babies get moved out of our nursery to be replaced by new, tinier ones. Actually, Saga herself had moved from Nursery 2 to Nursery 6 early on - a sign that her condition was becoming more stable. We started recognizing the parents of Saga's nearest "roommates," even when we saw them out of context, in the elevator. Watched and listened to the somewhat difficult negotiations between NICU staff and the parents of one little boy who had to go home - all the way back to rural North Dakota - while still on oxygen.
By law you are not supposed to hear the details of anyone else's medical condition, so the nurses take great pains not to answer questions - even friendly ones - about how this or that baby's recovery is going. But when the curtains are drawn around each individual bedside for breastpumping and -feeding, you can overhear a lot about the babies in the next bed over. Of course I have no nefarious intentions of giving away anyone's identity and diagnosis. It's more that I was rooting for each of those babies to get strong enough to go home because I felt their families' pain, and I saw my child in theirs.
The baby whose mom I ended up relating to the most "on the inside" was Stacy (there I go, giving away unauthorized details! just kidding), whose son was in the crib next to Saga's for many weeks. He and his twin had been in the NICU at least a month before we got there; in fact, Stacy told me at one point that she remembered Saga being brought into Nursery 2 in the first place, after her ambulance transport from the other hospital where I gave birth. Saga's roommate's bigger, stronger twin had been discharged from the hospital a long time ago, but kept coming back, along with their parents, to visit the remaining twin (how's that for mental gymnastics to avoid using either boy's name?).
Saturday, when Saga was detached from all monitors and had nothing electric attached to her body anymore, I said goodbye to Stacy, who still doesn't know when she'll be able to take her second son home. He's been in there longer, had more surgeries, and gained less weight than Saga - "there but for the grace of God go we." It makes me realize how fortunate we have been, even with all we've been through. I remember asking Saga's core nurse, once, what's the longest any baby has ever stayed there. She thought for a minute and replied, "Well, I think we've got one ten-month-old in the NICU now ..." Imagine! It's almost a year since your baby's birth, and she or he has never been well enough to come home from the hospital. I'm counting my blessings. And hoping Stacy's son goes home real soon, too.
I've learned so much this summer in the NICU - a lot of things I wish I'd never had need of learning, but interesting nonetheless. A friend from our old church in Vista (the one where we got married) had two sons, the younger one a preemie like Saga. I remember her seriously considering becoming a nurse because of her hospital experiences with her son. I wonder whether she has done it by now? I can understand her wish to change careers - watching those NICU nurses save tiny babies all summer made me question whether my paid work is making much of a useful contribution to the world. Most of my high school students aren't going to remember what they learn in Japanese class anyway.
Two things I learned at the NICU helped me to see the bigger picture: a textbook translating medical jargon for parents of preemies, and a bar chart hanging on the wall in an office about the prevalence of four conditions among preemies specifically at Amplatz Hospital. It was alphabet soup: CLD (Chronic Lung Disease), ROP (Retinopathy of Prematurity), IVH (Intraventricular Hemorrhage), and NEC (Necrotizing Enteric Colitis). (The fact that I know what all those acronyms mean is a testament to how much I've learned this summer!) Out of those four, by far the most commonly occurring was lung disease - another fate we are lucky to have escaped. But the poster was also talking about how the hospital is taking measures to reduce incidence of all four conditions in the preemies they care for. That gave me hope for the future, to know that medical science is still improving the lives of premature babies like Saga, including right here at our hospital.
The textbook I mentioned above was mostly organized into chapters for each of the bodily systems that can be messed up due to prematurity. There were eleven of them:
- gastrointestinal tract,
- immune system,
- skin, and
- temperature control.
So I guess if I needed to sum up our whole experience in one word, I guess it would be: Gratitude. Hopefully, I won't go through life taking things for granted so much after this passage. With all I have described so far, I never mentioned - because I never allowed myself to seriously consider - the worst possibility of all. Some parents of NICU babies only bring their baby home once ... in order to bury them. No matter how much the medical technology has improved over the years, they can't save every baby.
In the Family Lounge at the NICU, there's a shelf full of books and toys to entertain the patients' siblings. Many of the books in there had the words "Ella's Halo" stamped on them. At one point, our core nurse gave us a sort of gift bag from Ella's Halo, and I had the opportunity to ask her about it. Ella was a baby who was born a few years ago and lived in the NICU for 83 days; in fact, our core nurse had been her core nurse, too. She said Ella was a fighter, but some things were not meant to be. When she died, Ella's parents set up this foundation to provide comfort (or at least useful supplies) to other families going through the NICU experience with their baby. The bag contained items one might need while staying overnight in the hospital - soap, toothpaste, tissues, a water bottle. Ella had been that family's first and only child, but fortunately, they have recently had another healthy, normal one, according to the core nurse. Good for them.
Though I tried not to think about the spiritual ramifications of having a fragile premature baby, they did come up here and there. Before one of Saga's surgeries, one staff member asked if she had been baptized yet, and if we wanted her to be. As non-Christians, this question wasn't important to us, but I'm sure some parents would certainly want to have that done, in case their baby didn't make it through surgery for some reason.
The hospital has a chaplain on staff, whom, curiously, I didn't meet until the week of Saga's discharge. I didn't tell him what my beliefs are (Unitarian Universalism with a neopagan bent), and he didn't ask, but at the end of the conversation he reached out a hand toward Saga and said "Bless you, child," which was nice.
Another time, while we were waiting those interminable five days for Saga to finally breathe on her own again, I went into the hospital's chapel to cry and pray. I don't know what I expected, but I was very pleased with what I found: aside from a small separate room with a kneeling bench and crucifix in it, everything was kept non-denominational and inclusive. There were various holy books, Muslim prayer rugs, and best of all for me, a large Labyrinth on the floor of the main chapel room (I guess you'd call it a sanctuary).
That day, I walked the labyrinth and rested in the middle to pray and meditate. On an earlier occasion, I had composed a prayer for Saga to the spirits of the four directions, Air, Fire, Water, and Earth, and the center, Spirit. In it, I prayed for her breathing, warmth, tears, eating, and for her future, that she may live unencumbered by disabilities. I still have the piece of paper I wrote it down on somewhere; I ought to put it in her baby book.
This has been a long chapter in Saga's saga. It has taken me over two weeks to write, since the weekend she came home from the hospital. I kept leaving the computer for days at a time, and then coming back to write more. Leaving it because the writing was intense, but coming back because it was good for me, to get it all down on paper. Someday, I will give these pages to Saga to read for herself.