I feel really nervous sitting down to write this. I want to write it all out so that I can anchor myself in the present as I plan A.’s first birthday.
This is the first time I saw my son, standing.
I was totally drugged on magnesium for the first day and a half after A.’s birth (to prevent seizures as my liver was recovering). He was born on a Saturday night, and I didn’t realize I had had a baby until Monday. Am I a mother? Do I have a son? The first time I let myself think those thoughts, I was washed with a joy uncertain. It would rise up like a question, I would hold it a minute, then let it go before I got too hopeful.
W. and I had no knowledge of preemies and their ability to turn into healthy kids, so we were terrified and in shock. It would have helped immensely if I had already been connected to this blogging community.
There were so many weird, fucked-up feelings coursing through me, especially the first few days. I read about these feelings in support books, but I was certain that mine were worse. There was: Fear of my baby, fear of looking at my baby, fear of loving my baby and getting attached to him, fear of dying and not being able to raise my baby. Disbelief that I had given birth. Feeling like I was cheating, somehow, if I said I gave birth, because I didn’t, really; rather, I had to have a crazy emergency surgery because I was very sick because my body failed pregnancy and instead got me and my baby very sick. I was actually embarrassed. I had to call and cancel a hair appointment for February 14th, and I was embarrassed. Embarrassed that I had failed, as though my pregnancy and now childbirth were a sham. Had I really even been pregnant? Even that seemed doubtful at this point. Resentful that this was my baby’s birth. Resentful that the name we picked out for our healthy beautiful baby was going to be given to this baby. (How terrible is that? That is the worst one.) Mad at myself for all the fucked-up thoughts. Mad at myself for failing my baby. Mad at my body for not doing what it was supposed to do. Worried that he would die. Worried that he would have permanent health problems. Worried that I would die. Worried that I would have permanent health problems. Disappointed that there would be no beautiful pictures of me and my baby just after birth, with me looking tired and blessed and him looking new and whole. Instead there would be incubators and wires, and me all swollen and sick. Guilty that I wasn’t what he needed now, for his third trimester. I couldn’t give him what he needed to live. I had failed, and the job was passed to the professionals, who would do it right. Guilty. I know he needed my milk and that I succeeded in giving it to him. But at the time, I didn’t believe he really needed it, because I had failed him on all counts. I thought the nurses were just telling me it was liquid gold to make me feel better. Sometimes, I couldn’t imagine that there was any way this was all going to be OK– that he would be OK– and I would long for my life before I got pregnant. Guilty. Guilty for not believing in him from the very beginning. Guilty for not landing on my feet and hitting the ground running. For not launching myself into motion right away and determinedly seeing him as a fighter and myself as his tireless cheerleader. He was a helpless thing that I failed. And what was I? Really, I didn’t know. I was his visitor that would try not to accidentally hurt him while taking his temperature and changing his diaper.
I would see the equipment, the nurses, the specialists, and be stunned, thinking: wow. you really have hope for this little being. your hope is more beautiful than mine. mine is desperate, doubtful. yours is certain and steady and generous. mine is selfish and wounded. yours is the hope that he needs right now. you are what he needs right now. why am i not the one he needs right now? how can i be the one he needs right now? am i doing this right? is this hurting him? why are his alarms going off? is this normal?
Much of the time in the NICU, I was keenly aware that I wasn’t supposed to be seeing him yet; he wasn’t supposed to be born yet. Looking at him in his isolette, I often felt like I was looking at an ultrasound. I was seeing my baby, but I was taking a peek at him through a barrier that felt 2 feet thick; I was catching him off guard, disrupting him.
From the very beginning, we were told that there would be good days and bad days; that we’d be on a rollercoaster for three months. That things might get very scary. We were very fortunate that things never did get very scary. There were definitely days that were harder or easier or more distressing or assuring, but there was no day among the 99 days where anyone was truly concerned about his progress. Yet the neonatologists, nurses, respiratory therapists, physical therapists, nurse practitioners, lactation consultants, social workers, other parents, and March of Dimes ladies were constantly reminding us that things could get bad any minute now. We were on the edge of our seats for three months, always waiting for the other shoe to drop. There were echoes of other people’s shoes dropping all around us. Two babies died in our nursery.
All of this, and I still knew—I have to admit that I always knew– very deep down, that he was going to be OK. I looked at him, raw and red, and saw a perfectly formed baby. Did I really make him? Look! He has toes and legs and hair and hands! He is perfect! Just very little is all.
He is holding W’s wedding ring in that picture.
I was excited to blurt his name, his full name, to anyone who would listen. I was certain it was the best name in the whole world. I drew hearts on all the February 9ths on all our calendars, like a 12 year old with a crush. I sent an email out to all of our friends and family, with the subject heading: our little bird.
He was furry. Especially his shoulders. We could touch him gently by “containing” him, putting our cupped hands around his head and feet. He would calm when we did this. It was a few weeks before I could hold him. I felt like his mother when I held him.
Cheech and Chong taught us how to pump. It was funny, but also like Hell. Two night nurses showed up around 11:30pm the day after his birth. One spoke Chinese primarily, the other spoke Spanish primarily. “Hello Susanna! Do you have pain?! How are you?! Now, you pump!” Are you kidding me? Now? I’m only a few hours off the magnesium and totally wiped out. And, Really? You think I’ll even make milk? How could my body possibly make milk? They smiled with relentless cheer and bickered about how best to wash the pump parts, reprimanding Wifey, “No! You wash three times hot water, one time cold water! No soap!” Then the other would tell us the opposite. “Use Ivory soap only! You soak 20 minutes!” Then the next day the lactation consultant told us something completely different.
It sucked being in the postpartum unit, where I could hear healthy babies crying in the rooms next door with their mothers.
I was discharged on February 14th. Two days later, my C-Section incision opened. And I was also feeling some of the same abdominal discomfort that I had felt the few days before he had to be delivered; maybe liver issues? Back to my OB. To be sure the liver issue had resolved itself (as it usually does with HELLP Syndrome), she did bloodwork. My LFT (Liver Function Test) was still very high. (It is supposed to be 0-40 and mine was in the 400′s). I was readmitted to the hospital, and stayed for another frightening week. No one knew what was wrong with me. Sometimes HELLP shows up/sticks around after delivery. Since delivery of the baby is the only cure for HELLP, what do you do if the baby is already delivered? Obviously, you die. Or, remain heavily medicated. But no one was telling me that. They were just running lots of tests, doing labs twice a day. There was the possibility that it wasn’t HELLP after all, so I was visited by a different doom-speaking specialist every day, and each would order a nerve-wracking ultrasound of a different body part, usually to be performed at some ungodly hour of the day. There were perinatologists, gastroenterologists, wound care specialists, and all the OB’s in my OB’s practice. I behaved bizarrely stoic through all of this, even cracking jokes with all of the medical staff working on me, and I’m usually not really that funny. I took pictures of them doing wound care on the 1.5″ deep, 5″ wide gash in my abdomen. Really, I was scared, mainly at night. W. stayed with me every night, sleeping on a cot. I would usually wake her in the night and ask her to climb into my hospital bed so that I could feel her breathing and relax enough to sleep. I was very afraid that I would die of this strange disease.
A week after delivery, my LFT was still climbing, not lowering. After ruling out several more possible causes, the OB’s and perinatologists gave up and handed me over to the liver specialist. He was fatherly, with thick Scottish sweaters. He assured me I would not die, and put me on a hefty dose of prednisone, and the LFT started going down, slowly. I was discharged, and we’d have to wait and see what my liver did on prednisone over the course of a few months. More diagnostic possibilities were weeded out, including three different forms of autoimmune hepatitis, which is what the liver specialist thought I had. This would have meant being on steroids the rest of my life. Each of these tests took forever, and it was weeks before we had answers. Hepatitis E was also ruled out, but first I was called (as in, personally, on the phone, for 45 minute interviews) by the (suddenly concerned!) federal and state government health departments to see how I might have contracted Hepatitis E without having left North America in the last 6 months. Oh yes, I felt special. Only one case per year is reported in North America, and it is more common in India and some other developing countries. The most rare of all of these possibilities was the very last one, the one the liver specialist took forever to admit that I had. Variant Acute Fatty Liver of Pregnancy, which one in 15,000 women get. It is usually diagnosed after death, and otherwise can only be diagnosed by biopsy or, the preferred and less-invasive method, process of elimination. The OB’s still refer to it as HELLP, because Acute Fatty Liver of Pregnancy and HELLP are on the same spectrum of liver shut-down. It’s like you have preeclampsia on one end and then HELLP and then Fatty Liver. A person recovers from Fatty Liver of Pregnancy, once the LFT is managed, usually–hopefully– without the help of steroids beyond a few months. I was going to be fine. But I was told that I would die if I tried to have another baby. I was finally weaned off the prednisone on May 7th, A.’s due date. (Ironic, isn’t it?) I had to go back this week, actually, for my 6 month follow up blood draw to check my LFT, to make sure it is still down. I’ll find out in a week. It was hard being back there, like visiting an old nightmare.
There’s this Bonnie Prince Billy song called “No Bad News” on the album The Letting Go that goes:
hey little bird
hey little bird
thank you for not
letting go of me
when I let go of you.
That’s the song I sang to A. over and over as I held him on my chest.
He was so light. We kept him covered with blankets that had been warmed for him. Gradually, we did “skin to skin” for an hour every day. I brought my own bathrobe, and would wait with butterflies in my stomach for the nurse to tell me he was stable enough to be held that day.
Alarms were always going off, for him and the five other babies in his nursery.
Fortunately, we only live 10 miles from the hospital A. was at. I wasn’t one of those mothers who stayed at the NICU for fourteen hours a day. (more guilt). Wifey and I would go for about five hours per day, either together or alone at two different times. The last few weeks I would stay longer, but earlier on we couldn’t really go more. I was still sick, and W. was trying to take care of me and go to work, and keep our bills paid, our food stocked, our dog happy, etc.
I was a cheeseburger-eating zombie for three months. Stoic, if I’m feeling generous, but mainly depressed and single-minded. The prednisone was doing weird stuff to my mood. I would walk through the halls of the hospital feeling like I was in a bubble, somehow floating through the real world without being a part of it. The bubble effect was even greater outside the hospital. I was actually glad to have to pump every 3 hours because it gave me something productive to focus on. I felt lost and confused and dim witted. Somehow the time passed. I ate lots of cake in the hospital cafeteria. My parents visited a lot; my mom went with me to my scary doctors appointments. We would both eat cake. I think I was taking refuge in the cafeteria, because it seemed like the greatest place at the time. I had three doctors appointments each week for a while: wound care, OB, liver specialist. Doctor, pump, NICU, cafeteria, sleep, repeat. I guess we only renewed our monthly parking pass 3 times, but it felt like 10.
Often A. would sleep through our visit, often he would fuss in discomfort. On those days I would leave deflated. Other days he would engage and interact with me and it felt like the moon in my hands, we would have conversations staring at each other. There were good days practicing breast feeding and bottle feeding and scary days where he choked badly. Once he stopped breathing — choking while breastfeeding — and I had to shout out for the nurse. I think that incident had some lasting traumatic effects, because for months afterwards I would break out in a sweat with anxiety every time I nursed him.
There were three blood transfusions, no surgeries, 8 days on the ventilator, many weeks on CPAP, then vapotherm, then nasal cannula. He stayed in the ISCU for three weeks after he was off oxygen because he was having a hard time eating via nipple. He did better with breastfeeding than with the bottle (an uncommon occurrence), but still not well enough to get a full feeding, eight feedings per day. Each day in the ISCU seemed so long. I started getting more demanding with the nurses, quizzing them at the beginning of their shifts. I was starting to believe that I could take better care of him than they. We would get hopeful that he would be coming home, then have to wait. May came, and with it his due date, my birthday, and Mothers Day, all passed. Everyone kept saying, “It’ll be at least two more weeks.” Then on May 15th he yanked out his own feeding tube and they didn’t put it back in. On May 16th they said he was coming home tomorrow. I don’t think it was until that day that we let ourselves totally believe he was really ours, that we would get to keep him. That we could really be this lucky.
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