At the end of my post about his birth, my son was teetering on the edge of life and transferred to a hospital 60 miles away from us. It took a month of hospital treatment for him to be sent home, but he is currently nursing like a normal two month old, happy and healthy. We have a few more tests to run, but everyone suspects they won’t turn up much. In all honesty, we don’t really know why this happened, which is somewhat maddening. I would like to make sure this never happens to me OR anyone else ever again, but that is beyond my power, because we aren’t exactly sure why it happened in the first place.
BABY
Baby boy was diagnosed with respiratory failure at birth and born with swelling alllll over. Ascites, extra fluid in the abdomen, hydronephrosis, swelling in his skin. This condition is called hydrops. The doctor told us not to Google it because it’s scary, so I did because I’m not a very compliant patient, and it turns out it’s quite fatal. There are also a million things that cause it. It’s more like a set of symptoms than an explanation for anything. They suspected an infection was what caused the condition, put him on antibiotics, and tested him for every virus and bacterial infection under the sun.
He was intubated for several days. His oxygen saturation remained lower than it should be for too long and his heart wasn’t working well for a couple reasons. One was called a “diabetic heart.” I was confused by that, because I haven’t had any babies with heart issues, and was surprised to hear about this common condition that I’d never heard of. They said it was “floppy” and “too big,” something about insulin being a growth hormone, causing the heart to be oversized and not contracting as forcefully as it should. The cardiologist said it was a thickening of the heart muscle which has now resolved. I still have questions.
The placenta pathology showed that there was extra knotting in the blood vessels, indicating that *maybe* placental insufficiency was an issue. But the OB also said it looked like a pretty normal placenta when she pulled it out. There were no calcifications, and his size (30th percentile) indicated adequate blood flow for most of the pregnancy.
The swelling resolved over a few weeks. His platelets were very low for about ten days and he required four transfusions, but no test for infection turned up positive. His head ultrasound was fine and they figured that he didn’t have any brain damage because he was doing all the normal newborn things. He handled initial oxygen weaning well. He was discharged from the far away hospital after two weeks, back to the local hospital, and there he was weaned off oxygen all the way and taught how to feed by mouth. I’ve been measuring his weight at home with a Walmart baby scale and it’s increasing normally.
Just so you’re aware, one of the painkillers they give babies in the NICU is sugar water. That’s right! Narcotics and sugar water on pacifiers are among the pain management tools for babies. So next time your toddler freaks out about the cookies you won’t give her, just remember she’s in withdrawal and you’re staging a necessary intervention.
Besides placental insufficiency — which just sounds awful, like I’m an inadequate mother, though I know that’s not what anyone means by it — he did flip breech at some point during the last 48 hours of his womb stay. He had been head down for months, so the breech presentation, especially just two days after an ultrasound showing vertex presentation, was very odd. I have to wonder if he flipped and his new position pinched the umbilical cord, cut off blood flow, and all the rest of the drama followed from that. But it is truly hard to know. If I’d come to the hospital twelve hours later, it likely would have been a stillbirth.
MAMA
C-sections are weird. It turns out that they remove your uterus to scrape out the blood and sew it up, which is neat, and helpful for controlling postpartum bleeding. But also, the scar and the skin around it is completely numb on the outside for a few weeks. It took a full 12 hours before I could use my legs to get up and go to the bathroom, and the process of sitting down, standing up, crying too hard, laughing too much, or lying down was a burning, searing kind of painful for the better part of a week. I was mostly worried it was going to rip the wound apart again, and that anxiety made me kind of lightheaded. But as long as I stayed still and didn’t get too emotional, I felt fine. The wound did not pull apart. I was discharged after some drama about a breast pump, about 48 hours after delivery. I was pumping, but also got plenty of rest during those hours, since I had only myself to care for, no baby.
I couldn’t walk very far for about a week postpartum either. I think that probably would have been similar with a vaginal birth, but I don’t recall having so much trouble with past births. The reason it bothered me so much this time was because I had to walk a good ways from our car in the parking garage up to the NICU floor where my son was being treated. Wheelchairs were available, but people to push them generally were not; technically my husband and I were not allowed in the NICU together. Only one parent at a time, per COVID19 protocol. Painfully, once I got up to the NICU, even the bathroom was almost too far down the hallway for me to walk.
After a day or so at home, I developed postpartum preeclampsia-like symptoms. I had a headache. My blood pressure readings, taken with a cuff at home, were borderline high (150/100 was the highest they got). I was nauseated. I kept calling the OB but got different answers from different doctors about when I should be concerned. Finally, one doctor told me that 160/110 for multiple readings was the cut off for treatment, and a friend told me later that treatment itself (magnesium drip) is pretty uncomfortable, so I’m glad I didn’t need it. But my friends, helping me with the kids at home while my husband stayed with the baby, were worried about me, and so was I. I do not know if these symptoms were related to my age, my multiple autoimmune disorders, the c-section delivery, or the fact that I was so distraught at not seeing my baby. It only dawned on me slowly that he could die without me ever having a chance to hold him, and that made it impossible to relax, which was the only treatment prescribed by my OB. My realization of this fact grew and my own physical discomfort increased.
I was more than a little shocked that I did not need any pain meds stronger than ibuprofen, and even that I did not take round the clock past my hospital stay. I took it about twice a day for the first few days home, then once a day for a few more days after that. I was mostly taking it for the headaches, not the scar pain, and I never wanted anything stronger. The pain was not my biggest problem. My biggest problem was overall weakness and emotional distress.
Pumping is not the same as breastfeeding. Pumping is only painful, whereas breastfeeding is both painful and relaxing. His nursing was slow at first, because they never really let him get very hungry in the NICU. He nursed weakly and for a short time, sometimes refusing to latch at all. Things took off within a day or so of being at home, however, where we weren’t under so much anxiety-inducing scrutiny. He got hungry and had to work a bit harder for his food, and he did.
Emotions ranged from irritability at my inability to be a mom to every one of my children when every one of my children was not in the same place, to despair about ever seeing the baby or breastfeeding, to fear for my own health, to shame about having postponed an induction that could have spared us all this drama and needing so much help.
HOSPITAL
My first son also had a brief NICU stay for a possible infection. One notable difference between that first stay more than ten years ago and this one was that there was not any significant accommodation for the comfort of parents in either hospital this time around. A decade ago in St. Louis, I was put up in a postpartum recovery room for the week that my son was hospitalized for IV antibiotics. I don’t remember how we did meals, but I do recall that friends brought food one night. I know that others like my mom and husband were allowed to visit us both.
This time, my husband had to sleep in a recliner, the bathroom was outside a locked door and you had to get permission to get back into the NICU when you were finished, and no food was allowed in the room. I assume a lot of these things are COVID19-related. Some of them may very well be practical and useful for preventing spread of viruses. But I would suggest that it’s time to revisit that particular policy. It made the whole stay more brutal than it needed to be and I really don’t think that it reduces viral transmission by much to have parents sleeping in a recliner versus a bed. Especially not parents who have just tested negative for COVID19 a few days prior and haven’t been anywhere except the hospital since then.
NICU nurses are great people, and I’d love to be one when I grow up (or when my kids do).
I had some trouble contacting providers at the faraway hospital and this increased my anxiety. On the one hand, I’m glad they protect the limited time they have for evaluating each baby and making good decisions on how to care for them. On the other hand, not being able to discuss these matters with them directly added to my misery at not being there.
The discharge criteria — a certain amount of weight gain over a few days and amount of milk consumed in 24 hours — was a difficult criteria to meet for a nursing mom, and basically requires bottle feeding for a baby of his age. This was frustrating because it left me feeling like they didn’t trust me to feed him, like my body was just going to be inadequate for nourishing this child forever and always. Placental insufficiency, breastfeeding insufficiency, insufficient weight gain...what other insufficiencies might he suffer at my hands when I took him home? I suspected I could feed him if left to my own schedule. I just couldn’t do it on an every three hours’ schedule, because my body doesn’t make milk that way, and because a breast pump is not as effective as a baby nursing. I also think weight gain is normally more uneven for babies, rather than a certain number of grams per day. I think my experience since leaving the hospital proves these points, and some of the nurses recognized that the criteria is difficult to meet. As one nurse told me, “Just play the game so you can go home, you can do whatever you want once you get there.” I needed to hear that to know that I wasn’t crazy for thinking that I would never be able to meet the criteria for discharge with nursing. After that, it was easier to wait and bide my time to work on nursing at home.
COMMUNITY
My mother in law flew all the way across the country to help us with the kids and wore a mask while she was here, just in case. My brother and sister-in-law watched the kids for several days while I was at the hospital. The obstetrician cut me open and got him out, then sewed me up again, and the anesthesiologist made sure that wasn’t a more awful an experience than it needed to be. One of my husband’s colleagues cleaned our house (and caulked the toilet!) while we were gone. Many people gave us gift certificates so we could have food delivered from local restaurants while staying at the hospital. Local families brought meals to the house. People unexpectedly sent us money. Friends took care of our kids while I was somewhat disabled the first few days home from the hospital. I got rides to the faraway hospital from friends and family, since you’re not supposed to drive for a couple weeks after a c-section. Our baby’s godmother brought me two laminated pictures of him that I could keep near my breast pump to help with nursing. Several people picked up our groceries. Two different priests brought me holy communion when I couldn’t sneak away to the church at Mass times. My husband’s students gave us the gift of their time and took the kids down to the playground. A young woman from our parish gave us a relic of St. Philomena with which to pray. Mom friends brought emergency breastfeeding supplies and post surgery underwear. Lots of phone calls, emails, prayers. A friend from far away sent flowers and toys for the kids and diapers. My husband sat in the car in a cold parking garage all day so that I could spend a few hours in the hospital with our little man. Did I mention there was a small army of nurses who fed him, changed his diaper, gave him meds and baths, and held him when he cried, round the clock, for weeks?
I’m only just now beginning to catalogue the many, many kindnesses shown to us and it is rather astonishing and lovely. I’m going to use this list to go back and write thank you notes, so I hope I didn’t forget anything! I feel incredibly unworthy of it all. I occasionally still feel depressed about the fact that we can’t hang out with friends for COVID19 infection prevention reasons. I will likely always have some regret about the fact that there are so many things I am unable to do for and with my kids, like go to the zoo and museums and other interesting places, or enroll them in music lessons and take them ice skating and skiing, or let them join a soccer team. Expressing gratitude to friends and family has always been a helpful way to remind me of what we do have.
LESSONS LEARNED
My big “hindsight is 20/20” lesson from this experience is to just take the induction at 39 weeks, and do the kick counts. I’m glad I was not induced with my first. I’m glad I was allowed to take my time with most of the others, too. I don’t even regret pushing for a little more time to finish out my pregnancies, especially with my first, because it may have helped me avoid other harmful interventions. And if I’d followed all my doctor’s recommendations, the world would be missing seven awesome little people. But since we aren’t sure why this happened, I am trying to let the weight of this experience teach me to accept synthetic oxytocin with less misgiving. Now that it has happened once, it seems more likely that it could happen again.
Of course, kick counts *really* saved the day. This is precisely what they are for, to detect a problem that cannot be detected by ultrasound or any other test. We are so, so fortunate that my OB instructed me well, that our little man made it very obvious he was struggling, and that I listened when he did. Many nurses told me that they personally did not pay that close attention to their baby’s movements, that other women they know have not paid that close attention to the movements and lost their babies at the very end. Please understand that I do not say this with an ounce of pride about my own superior attention to detail, only with gratitude that things aligned the way they did. I may even have Type I diabetes to thank for my close attention to what is happening in my body — close blood sugar management teaches you to feel things and pay attention to things happening in your body in a way that other people might not. “Listening” to my baby’s movements was similar to “listening” for signs that my blood sugar is getting high or low.
But if there is one lesson that I hope remains in my heart from this experience, it is not to take life for granted. All the lives that touched ours during this crisis — nurses, doctors, friends, family — are ones that we are so glad were there in ways big and small. I hope they were glad to help our little baby! May God grant that we remember this lesson always.
