Good Stuff

Content note: Child-centered post

Yesterday marked the first day in quite awhile that the weather was fine enough for a good walk outdoors.  The temperature was in the mid-40s, which, given cold this winter, felt downright balmy.  The sun shone and we took a short walk to the park down the street.  E rode her trike and collected rocks.  We came home tired and a little muddy (the trike tipped in a puddle) and it was wonderful to finally get outside again.

The girls will turn two and four shortly.  They’re no longer babies, but instead children who are more interested in running ahead, picking out tiny treasures for their various collections, and reading books.  It is, of course, a little bittersweet – after waiting so long for them, it feels like the days have sped up – but it is also marvelous to watch them grow and change and begin to fill in the contours of their personalities in demonstrable ways.

M waited a long time for words but suddenly now in the last few weeks began speaking in full sentences: “I want more milk.” “Don’t go that way.  Go there.”  “It’s time for snack.”  She’s almost discharged from developmental therapy (for the speech) and knows her own mind well.  Books are her favorites, particularly Paul O. Zelinsky’s gorgeously illustrated Rapunzel, along with almost any book that has flaps to open.

E also is doing well.  Every time I think about the tiny 2lb 8oz (1190 gram) baby in the NICU incubator and stare at this child who is still quite petite in stature but huge in personality, it almost makes me want to cry with happiness.  She’s at age level in most skills except for some gross motor that needs to finish catching up.  Her favorite thing is stickers and making cards for people that she happily scribbles all over and explains to me what she “wrote” there.

Together, as much as I dislike the term itself, the girls are the definition of “frenemies”.  A sample interaction: E yanks a toy away from M, who tries to push E but doesn’t quite manage to do more than brush E’s shoulder.  E flops on the floor and starts sobbing loudly.  M goes over and pats E, making soothing noises.  E yells at M and stomps off.  A few minutes later, both girls are cuddled on the couch with E explaining a book to M, who is listening with great attention.

In other words, they’re siblings.  But I also know how much they genuinely care for one another.  E worries about M, M searches for E when E’s not in sight, and they play together well a surprising amount of the time.

They’re small children and there are days that don’t look nearly this idyllic, but every day, I’m grateful. 

Advertisements

This Dream Stands Before Me

Content Note: Child, parenting

When we moved to the city, we weren’t in much of a position to begin exploring.  Fortunately, as spring finally made an appearance, we began remedying that situation.  We started by taking E to the botanical gardens for her first birthday.  I hadn’t visited the gardens in years, and while the outdoor gardens weren’t appealing on the cool, gray day, the indoor gardens were beautiful and blooming.

It wasn’t E’s first outing – we’d made a few forays to restaurants during quiet hours when we could keep her in her carrier away from germs – but this one was the first we’d really done with the intention of getting out with her and showing her sights.  I’m not sure if she was impressed or unnerved by the brightly colored foliage, fish pond, and waterfall, but she kept looking around and staring at everything.

Later that evening, we took some cookies and other goodies up to the childbirth center where I spent my time on hospital bedrest and the NICU.  Seeing all the nurses who had cared for us for so many months was fun and everyone oohed and ahhed over how big E had gotten. When we stepped into the busy NICU, leaving the treats at the desk, I realized E didn’t belong there anymore as I watched people rushing around.

We threw E a party that weekend, just inviting family, but with Arthur being the oldest of five, it still meant a fair number of people.  I made simple food: meatballs, sandwich spirals, spiced oyster crackers, a fruit plate, a vegetable spread, as well as a from-scratch chocolate cake.  We helped her open her gifts, E far more enamored with the colored paper and boxes they came in.

Taking the baby out just for fun, throwing a party, going to NICU just to visit instead of staying, marked a moment that I’d dreamed about during her whole NICU stay and even beyond.  Every day, I’d go to NICU, take stock of the wires and tubes, and visualize E as a healthy toddler.  Hope that there was a life beyond the NEC scares, the brady episodes, the oxygen, worry about RSV, and the monitors where we would no longer wonder if this was the day it would all come crashing down.  It kept me going through the months where we couldn’t get E to eat, the nights the home apnea monitor would go off several times, often due to loose leads but jolting us nonetheless.

All of a sudden, that child ceased to be simply a hope and stood in front of me in the flesh.  I smiled, realizing that no matter what other dreams were gone, this one, this deeply cherished one had somehow come true.

The Enemy of Finished

When I was in college, I had a piece of paper taped to the top of my computer monitor that read: “Perfection is an admirable goal, but it is the enemy of finished.” I’ve found, in the years since graduating college, that this is good advice for life, not just term papers.

One of the items on my checklist if I ever managed to get and stay pregnant was high quality professional photography. Starting with maternity photos near one of the nearby lakes in springtime, then we’d transition to adorable, sleepy newborn photos and wind up with lively “happy first birthday” photos. There was (and still is) a good chance we’re only going to get to do this once, and I planned to make the most of it. These photos were going to be gorgeous and pinterest-worthy.

Once my water broke at 21 weeks, maternity photos were out. I couldn’t stand for long periods without gushing amniotic fluid, and I was trying to keep E’s head from exerting pressure on my cervix to stall labor as long as possible. I have one photo of me noticeably pregnant, taken about 40 minutes before my c-section when I did something I’d been longing to do for weeks and took a short stroll around the maternity unit. Arthur stands beside me in scrubs and I look puffy, wearing a very fashionable hospital gown and non-skid socks. It’s precious to me because of what it represents, but it’s not quite what I had in mind originally.

Then, of course, E was in the NICU for eight weeks, then out for four days, then back in for another eleven day stay. She was covered in oxygen and monitor cords. She got cold easily, so undressing her and doing those cute, sleepy photos wasn’t an option. I have quite a lot of photos of her in NICU, but none of them are professional for obvious reasons.

Once E got out, we scheduled with a professional photographer who had extremely reasonable prices because she was still building her portfolio. The appointed day of our (outdoor) shoot, it rained. We had to reschedule. Arthur and I wound up having a conflict with the second appointment. The photographer had to cancel the third due to a family emergency. After that point, we realized it wasn’t going to work. I had a couple of cute outfits and a family cradle I really wanted photos of E in, and she was outgrowing them. It was already July. We asked Arthur’s dad – who is decent with a camera – to take a few shots.

We cleaned ourselves up, I put on make-up and a skirt, and we schlepped ourselves and all of E’s outfits about an hour to do the shoot. To make a long story short, it turned out that Arthur’s dad, who had been photographing some of the flowers at the park before we arrived, forgot to adjust the settings on the camera. All of the photos took on a distinct blue-green tint as the color saturation was way off. Even after playing around with editing for some time, I couldn’t get the color quite right. I get along well with my in-laws, but even when people get along well in any family there are going to be moments where we are less than happy with one another. This was one of those moments. I reminded myself that  as upset as I was this was not worth serious drama, took a deep breath and counted to ten.

Thanks to a long time spent on bed rest, the short duration of my pregnancy, and Arthur losing his job for several months in the middle (and of course, IVF), I knew we didn’t have the money to do the gorgeous, outdoor, artsy photo shoot I’d envisioned at that point. This, for what it’s worth, is not a complaint. We are darned fortunate that with everything that happened we didn’t take a far more catastrophic financial hit. We are doing okay, amazingly okay. But we definitely didn’t (and don’t) have the discretionary income to throw the several hundred dollars it costs in our area after the shoot that lined up with my vision of perfection. After the set of photos with Arthur’s dad didn’t work out, life got busy with doctor’s appointments and then my brother died. Photos fell off the priority list entirely.

This week, I was in a gently-used children’s store looking for an item and ran across the cutest little Christmas dress in E’s size. It was inexpensive, so I nabbed it and Arthur and I delighted over it when I showed it to him. The familiar refrain in my head started. I have to get a cute picture of E in this dress.

I thought about it a bit more. Yeah, I really do want to get a picture of E in this dress. I don’t have a picture printed out of her to show people when they ask. I don’t have a picture for my locker at work. I really want a decent photo of her – and maybe us with her too.

I knew finding a photographer with availability at all this time of year was going to be a challenge, let alone one within our price range. I did a few internet searches and finally landed on the portrait studio at the local mall. The prices were low, low enough to fit in our very limited budget, and they had plenty of availability. I set the appointment for this coming Monday evening.

The photos won’t be breath-taking. They won’t make Annie Leibovitz sigh in envy. They really won’t be pinterest-worthy (except maybe in a hipster, ironic sort of way).

At the same time, I’ll have pictures of E in that adorable dress. I’ll have a reasonably decent photo of the three of us I can put up on my work locker and send to family. I also know, a couple of years from now, I’ll look at that photo and smile. We’re lucky at this stage we can even get this photo taken for so many reasons.

It’s not perfect. But you know something? Perfection – and pinterest worthiness – are overrated.  Sometimes, things just need finished.

Preemie Parenting: Our Own Version of Normal

Like a number of preemie parents I’ve read, I figured once we got E home from the hospital – especially the second time, when she was off the oxygen – we’d eventually pick up a somewhat regular infant experience. I mean, I understood that she would be developmentally closer to her adjusted age and there were going to be challenges, but after NICU, being home felt luxuriously normal.

When E was in NICU, twice nurses referred to her as a “micro-preemie”. I bristled a bit at that, and technically speaking, I was right: micro-preemies are usually considered babies born 26 weeks’ gestation or less and under 1.75 pounds. However, it’s not unusual to loosen the definition to include babies less than 29 weeks’ gestation and/or under 3 pounds, which E fits on both counts. Regardless, I didn’t want to hear it. E was a miracle. She had never needed a ventilator and was on c-pap for around 24 hours. She was going to be completely fine, and by ‘fine’, I mean that somewhere in my head I got wildly optimistic and figured that things were going to get much closer to what one would expect with a term baby.

Well, E is still a miracle, and I don’t use that term lightly. She smiles, giggles, and loves people.  She reaches for toys and plays now.  There’s no doubt we beat the odds big-time with her surviving at all. But despite the fact that E is doing remarkably well for how premature she was, there’s also no doubt that it’s not quite the same thing as raising most full-term infants. We go to doctor’s appointments/tests about once a week and get therapy weekly right now.

I got my first major taste of this beginning in August when E decided she was not going to eat peacefully. Prior to this, E had started occupational therapy (OT) to help her keep up and reach developmental milestones, which I had expected she might need. Eating had always been a challenge, but starting around the middle of August, the struggle intensified dramatically. When I say she wouldn’t eat, I mean she kicked, screamed, arched her little back and tried to throw herself off my lap to get away from the hated bottle.

In my drafts, there are writings totaling over six pages detailing the many visits with the pediatrician, specialists, Zan.tac, Pri.losec, changing bottles, changing techniques, and Arthur and I staring at each other in total frustration and worry as we watched our normally happy baby turn into a child that alternated between lethargy and screaming. It came to a head in mid-October when the GI specialist nearly admitted E back to the hospital but told us we could try a hypoallergenic formula as a last-ditch effort to avoid readmission. If she didn’t improve quickly, we had very little choice.

The new formula worked. E improved and was diagnosed with a milk allergy. She did not, however, get enormously easier to feed. Somehow, probably because Arthur and I are nothing if not incredibly stubborn, E has managed to gain weight and avoid a ‘failure to thrive’ diagnosis. We track every calorie. The ongoing battles with feeding continue to be a challenge.

Around this time, I also noticed something else. E has always had a few very mild contractures on her left side. We – and the various therapists that saw E both in NICU and First Steps – always assumed that the reason for these was the PPROM and being trapped for weeks in one position without amniotic fluid. The problem was that as E grew, they weren’t going away. She developed a bit of torticollis that led to a decided flat spot (plagiocephaly) on the left side of her head. With the OT and a lot of stretching, we managed to get the torticollis mostly corrected and the plagiocephaly improved.

During tummy time I also started to notice that she would push up with her right arm, but not nearly as much with her left. I pointed this out to the OT who assessed E and agreed. The left arm and leg were weaker than the right. We continued with OT and waited a little longer. The left sided weakness was mild, but continued to persist.

The weakness and contractures that were decidedly one-sided (hemiplegia) stood out as a possible neurological issue. I knew neither of E’s two brain ultrasounds in NICU had shown bleeding, but I also knew that the weakness was still present. I asked the doctor at the neonatal follow-up clinic about it, and she concurred that possibly having a neurologist evaluate was a good idea. We waited another month for the appointment, hoping E might continue to grow out of it and the appointment would become unnecessary.

The appointment was necessary and the neurologist agreed that there was a tone difference between the right and left sides. “I’d like her to have an MRI,” the neurologist told us. “She may have a small lesion in her brain and some mild cerebral palsy.” Seeing the alarmed expressions on our faces, the neurologist explained that cerebral palsy simply means that something happened that affected E’s motor skills before age 1 and reassured us that it didn’t mean that she’d never walk or have severe motor issues. In fact, the neurologist said, she expected E to keep progressing well and eventually catch up. She pointed out that E uses her left hand and it wasn’t contractured into a fist, which meant whatever is going on is very mild.  The neurologist also told us that the MRI might look normal and the issue might be due to the PPROM and restricted movement.

The neurologist also told us E needed a swallow study because of the hemiplegia. I’d refused swallow studies in the past because everyone had told me that the study checked for aspiration and we knew E wasn’t aspirating. She didn’t have the lung infections that mark even silent aspiration and no other symptoms. However, this was the fourth or fifth medical professional that had recommended a swallow study, so I reluctantly agreed and the swallow study is scheduled next week.

The MRI is scheduled for tomorrow. There’s a sense in which nothing will change, no matter what it shows. We think E is wonderful. She’ll continue with therapy. Regardless of the challenges, diagnoses, or issues we face going forward, what matters is that she’s our daughter.  We’ll love her, parent her, and fight for her, just as we always have.

What it does remind me, however, is that E isn’t a full-term baby. That this didn’t end when we left the hospital or got rid of the oxygen or finally turned in her apnea monitor. It’s meant that I finally have to start letting go of those things that define other people’s parenting experiences and embracing E’s timetable and coming to terms with accepting that E was born at 28 weeks due to circumstances beyond our control and all that entails.

It is what it is.  And that’s okay.  It’s our own version of normal.

Feeding Guilt

When we determined E was going to be born prematurely, I set my sights on a new goal.

One might think by this time that I might have learned that I really can’t force my body into doing…well, much of anything when it comes to conception, pregnancy, or babies. One, alas, would be wrong.

I knew, from consulting with the neonatology staff, that breast milk was “liquid gold” to premature babies, helping to ward off all kinds of infections and most especially the devastating condition necrotizing enterocolitis (NEC). Since I felt like I’d failed in pretty much every other way in human reproduction, I was absolutely determined to make all those things up by breastfeeding that baby.

I did everything I could to ensure breastfeeding success, from consulting with lactation before E was born to making sure I had an excellent pump. I talked with the NICU staff to make sure she wouldn’t be given formula. I made a promise to myself that I would not supplement or settle, but that I would pump and persevere no matter what to form a successful breastfeeding relationship.

E was born.

And PCOS, along with prematurity, bit me in the rear end.

It was a slow, excruciating downward trajectory. I tried just about everything. Pumping more. Power pumping. Eating oatmeal. Fenugreek. Blessed thistle. Relaxing. Dark beer. More water. Pumping beside the baby. Getting up bleary-eyed in the middle of the night to extract an extra ounce or so. Going back on my met.formin with the NICU staff’s blessing. Hands-on pumping and breast massage. Using a hospital-grade pump. Lactation consulted with me more times than I can count, at my request. New pump flanges and parts. Skin-to-skin time with the baby. Non-nutritive suckling. Nearly lost it when my doctor wouldn’t prescribe Reg.lan, because of its known potential for causing depression (which I was already having issues with). I had a D&E for some shreds of retained placenta.

I did manage to make, eventually, about a half-supply (8-12 ounces a day) on a good day.  This was okay for a time because E was taking so little of it due to her prematurity, but I knew at some point she was going to need more than I was producing.

During the whole mess, I started googling. Website after website, message board after message board told me that as long as I was absolutely determined and kept at the pumping, I could definitely increase my supply enough to exclusively breastfeed. There were buttons and images and cute little pins about the importance of breast milk and how most women could breastfeed (women who used formula, these implied, were just slackers who were making excuses or uneducated about the wonderful benefits of breast milk). Preemies could definitely learn to breastfeed, they crowed, and I ignored the fact that the vast majority of these babies were beyond 30 weeks at birth, sometimes far less premature than my daughter. I kept at the pumping with a vengeance. Surely things would get better when E was big enough to actually attempt real breastfeeding.

It didn’t, despite a great deal of time, energy, and various experts. I finally started, at the advice of the neonatologist, giving E a half Neo.sure, half breast milk mixture. I felt awful and guilty.

A few things helped me clarify and sort out some of the feelings. I got a wonderful comment on the blog that pointed out how it might be possible for me to increase my supply enough to exclusively breastfeed, but went on to say that it wasn’t something the commenter would necessarily recommend. I considered this and realized that she was right: there might be a way to do it with medication and maintaining a very heavy pumping schedule, but I hadn’t counted the potential cost of this action as closely as I’d been in the habit of doing during infertility treatments. All I’d been thinking for weeks was how “breast is best” and I needed to do anything that would make it work. The comment made me step back and, for the first time, realize that there might be a line I didn’t want to cross.

Several family members also gently reminded me that I needed to do what I needed to do, and if I couldn’t breastfeed, E was going to be fine. I just couldn’t accept it. I finally called the lactation consultants to get their opinion. Lactation simply told me that if I wanted to continue trying more and more extreme things to get E latched, they were happy to work with me, but that as frustrated and upset as it was making me, it was also okay if I was ready to stop. The consultant told me I’d done a great job to do as much as I had already. I don’t know why, as a grown adult I felt like I needed permission from a medical professional, but for some reason, I did. It was helpful to hear those words spoken out loud. I was actually in a tentatively okay place, the first real even semi-okay place I’d really been in since E’s birth.

Then I had a hard day in which things fell apart in those minor, seemingly silly ways and suddenly all I could think was I have to figure this out. I have to get my supply up. I have to get E breastfeeding. I went online and found the same echo chamber of message boards preaching how essential breastfeeding is to a healthy child and that anyone could manage it.

And a few panicked, tearful hours later, realized: I’ve been here before.

It was so similar to what I’d gone through because of infertility, all the insecurities and exhaustion rising up again. Just like every failed treatment. Just like all the disappointment at never once having a normal pregnancy. Just like every disappointment that my body would not do what I asked of it, what seemed to come naturally to most others.

There is always someone to tell you that if you (fill in the blank: tried harder, just relaxed, did another treatment cycle, ate whatever diet, etc.) everything would go back to being okay. The message is so often try harder. Or you just didn’t try hard enough, want it enough, go far enough, you don’t need to count the cost, you just need to keep going.

Often these are people who had issues that were more manageable and fixable. Or didn’t really have most of the issues at all. Or got inexplicably lucky. Or any other number of variables.

It’s good to have options. It’s not good to have pressure.

I took a good, hard look at what I was doing and made some decisions. My daughter was not going to latch and breastfeed no matter how hard I tried. The First Steps therapist pointed out some issues she has with her suck (most likely connected to prematurity) which meant getting her latched to my breast was going to be all but impossible. I had the worst of all worlds with regards to feeding: pumping meant I couldn’t go get my daughter and soothe her when she cried in the middle of a session, I had to wash all the equipment constantly, my finicky half supply meant a rigid pumping schedule with no sleep to maintain the little I had, and I still had the expense of formula. Continuing to try to get her to breastfeed I also identified as a huge trigger for my postpartum depression. I felt rejected and furious with myself every time she screamed as I tried to get her to take my breast.

There needs to be more balance on these issues. Not everyone can conceive “naturally”. Not everyone has a beautiful, “natural” pregnancy or birth. Not everyone can breastfeed or even produce milk (or, for that matter, wants to do so). It’s time to stop judging people for every damn thing, many of which are not actually choices.

I was recently re-reading Bill Bryson’s book A Walk In The Woods, an account of hiking the Appalachian Trail. It’s a humorous book as Bryson and his erm, interesting friend Katz – the only person who would accompany Bryson on the journey – attempt to hike from Georgia to Maine. The two weren’t able to hike to the end of the trail, so Bryson writes that he had some ambivalence about stopping. He hadn’t been able to accomplish his goal. His friend Katz had a different take on the situation: “As far as I’m concerned, I hiked the Appalachian Trail. I hiked it in snow and I hiked it in heat. I hiked it in the South and I hiked it in the North. I hiked it till my feet bled. I hiked the Appalachian Trail, Bryson.” (p. 271)

That’s how I feel about breastfeeding right now. I pumped eight times (or more) a day. I took virtually every supplement in the book. I was able to give my daughter enough to keep her exclusively on breast milk for two months. I got up every night for a long time. I dragged my pump around. I worked really hard to get her latched.

At this point, I’m dropping pumps bit by bit, allowing myself to get some much-needed sleep. I give E whatever I get out during those and my supply is dwindling down. I hold her. I cuddle her. I enjoy her. There’s a good chance I’m only going to get to do this once, and I want to have as many happy memories as I can during this time.

I’ll let Bryson sum it up for me: “We didn’t walk 2,200 miles, it’s true, but here’s the thing: we tried. So Katz was right after all, and I don’t care what anybody says. We hiked the Appalachian Trail.” (p. 274)

Exactly.

I breastfed that baby. I don’t care what anybody says.

Past Midnight

Content note: parenting after infertility

June 9-10, 2015

We’re rocking in the chair, room darkened except for the moonlight, E heavy on my chest, listening to the clock tick over into the first moments of a new day.

E is a night-owl, as it turns out. I should have known. When I was pregnant with her, she was always most active during the late night monitoring session. This trait has continued, hence the rocking sessions into the wee hours of the morning. E seems to finally start to doze, her eyes occasionally opening drowsily and closing longer and longer. I rock slowly back and forth, back and forth, knowing if I try to put her in the crib too quickly, she’ll wake up.

It’s discovering these little details that has become precious and surprising in the last couple of weeks. Although E’s been on the outside for nearly three months, it’s hard to truly get to know a baby who isn’t home and incorporated into the rhythms and routines of family. We were finally able to bring her home – we hope for good – on Memorial Day Monday. We are down to one monitor and no oxygen. Having her home is slowly going from a big change to our normal.

We are so grateful.

At the same time, we are just beginning processing everything that happened surrounding infertility, my pregnancy and E’s early birth in the last several months. I know I’m going to have to deal with the memories that present in persistent nightmares and the triggers that bring flashbacks. I’m going to have to figure out a way to reconcile the day I considered how to plan my daughter’s funeral with allowing her the space to grow. Arthur has his own moments, and it has occurred to me how important it will be that we grieve and grow together instead of letting the enormity of the stress we’ve been under for months send us spinning into our separate spheres.

It will take time. Probably a lot of time and therapy.

Tonight, however, I just rock E, who has finally fallen asleep.

Tonight, that’s enough.

Dancing the NICU Freak-Out Shuffle

 Thank you so much for all your well-wishes on E’s birth!  They are much appreciated!

Once we knew we were having a preemie, several veteran preemie parents warned me that the NICU is, variously, a “rollercoaster”, “two steps forward, one step back”, and to “never trust a preemie”. Up until quite recently, E had been mostly on a straight upward trajectory. Starting with reasonably good lungs for a preemie despite the PPROM and oligohydramnios, she’d been able to have her feedings go upward at a decent rate, her bradycardia episodes had been minimal, and she was needing less supplemental oxygen. I started to get comfortable and wonder if she was just going to keep doing well all the way through her NICU stay.

I had gotten a nasty cold a week earlier despite more or less developing germophobia and constant careful hand hygiene. I couldn’t visit the NICU until I was 24 hours symptom free. Unfortunately, I wound up needing to wait a full week before I could see E. Arthur, who did not get sick, wore a mask and set it up to Skype in E’s room. It was better than nothing, but not the same.

Finally, on Tuesday, I was cleared to go see E. She looked bigger and fuller in her cheeks, more like a normal baby. Holding her was bliss, and I sat and stared at her for a long while, memorizing her features. She looks exactly like Arthur did as a baby, although she definitely has my ears. This is obvious because I have remarkably pointed ears (for real) and it’s funny to see them on E. E had gained weight, was up to a whopping 3 pounds, and we had a nice day together.

Then came Wednesday.

It started out with Arthur and I having a disagreement. Sleep deprivation can turn even the most minor issues into major ones, and by the time we had smoothed over our differences, I wound up going in to the hospital much later than I’d planned. I was cranky, tired, and out of sorts already when the nurse practitioner (NP) called me while I was in the car. I told her I was on my way and she said she’d talk to me once I arrived.

I’ve been in healthcare long enough to know that NPs and doctors don’t generally call if things are going well. I hurried to the hospital, got up to NICU, and after scrubbing in, headed for E’s room. When I got there, I found several nurses drawing blood and serious looking medical equipment scattered all over the counter.

Cue total panic.

It transpired that E had suffered several deeper, uglier bradycardia episodes that morning during her feeding than normal for her. Bradycardia episodes or “bradys” are a situation where the baby’s heart rate and oxygen saturation plunge below the usual range for an infant. They’re fairly normal in premature babies since preemies don’t have a fully developed nervous system that regulates these things perfectly. However, there had been more episodes than usual and E had needed extra stimulation to recover. A new pattern with bradys can indicate developing trouble, hence the sudden attention and work-up.

The nurses drew blood to culture for bacteria and check some labs. They started an IV for fluids. X-ray was called to check E’s lungs and abdomen. I stood watching and sobbed. The nurses tried to reassure me. E wasn’t lethargic. Her vital signs were staying stable. So far, her labs were coming back normal. They were starting her on antibiotics just in case there was an infection somewhere. She had good bowel sounds, no blood in her stools, and her abdomen was soft. In the one funny moment during the whole time, E managed to get some impressive range for a girl and peed all over the nurse when they were trying to put in a temporary catheter to get a urine sample.

I wasn’t having any of it. I knew, intellectually, there were any number of issues that could have caused the bradys, ranging from the fairly benign (reflux) to the very bad (necrotizing enterocolitis/NEC) but it didn’t matter. I was very worried and scared.

Then the x-ray came back. The neonatologist said he was concerned about an area in her bowel. He couldn’t be sure whether what he saw was air bubbles in the intestinal wall, indicative of NEC, or just some stool in there. As a precaution, E’s feeds had been stopped as soon as she’d started having bradys, antibiotics started, and another x-ray in six hours ordered. I sat holding E, trying not to cry. NEC is an extremely serious condition. Basically, a part of the intestinal wall gets infected and dies, which can cause the intestinal contents to leak into the peritoneum, in turn causing massive infection and sepsis. It’s not unusual for babies with NEC to need surgery to remove parts of their intestines, which can cause issues with nutrient absorption and feeding later on. Sadly, around 30% of babies with NEC die.

The next x-ray was also inconclusive, but the doctor said he still saw an area he didn’t like. I decided to spend the night in E’s room because the idea of getting a 2 am phone call that she’d taken a turn for the worse was intolerable. E did well through the night, however, with one minor brady. I waited for the x-ray scheduled for morning. It was difficult knowing the only thing I could for my child was hope, pray, and wait (again).

The third and fourth x-rays, thank heaven, came back looking infinitely better than the first two. In fact, the NP and neonatologist said that if they hadn’t seen the 2nd x-ray yesterday evening, they wouldn’t even have felt worried and would have just restarted her feedings today. E doesn’t have any of the other symptoms of NEC, such as bloating or blood in her stool. The problem is that with two inconclusive x-rays, while they don’t think E has/had NEC, they simply can’t rule out 100% the possibility that they caught NEC at a fortuitously early stage and due to stopping feeds and starting antibiotics were able to prevent it from progressing.

At the moment, the whole “what do we do next” issue is still very much undecided. Because NEC can’t be ruled out entirely, the current inclination is to hold E’s feeds for anywhere from a couple of days to 1 week and give her nutrition through her IV so her bowel can rest. The problem with this plan is that E would need a special IV called a PICC line if it’s going to be more than a day or two before restarting feeds. The NP and neonatologist are holding off for the moment on making any specific plan until another x-ray or two can be checked and labs done tomorrow.