It’s me. I’m back online. In some form or other, vaguely resembling the original version. Physically, emotionally, mentally, I don’t know how close I’ll ever get back to that prototype.
First, the thank-yous. Such an outpouring of love and support out there, I truly appreciate every word and thought and prayer. You try to live a good life and leave a positive impact on those around you, and I have some proof that I was able to touch some lives positively… I’m proud and grateful for that.
Next, the details. I’ll try and write as much as I know here, though I already know it will be a several-stage process. I don’t have the energy to write it all at once, plus it’s horrifying enough that I cannot comprehend the whole thing in one fell swoop. I have to think about small bits and pieces at a time, and even those become overwhelming quickly.
Isaac, whom I have seen and held exactly three times since his birth sixteen days ago, is thriving beautifully. I cannot think too closely about not seeing him, or my bigger kids, because it’s one more horrible blow that my brain can’t/won’t endure. In the SICU (Surgical Intensive Care Unit), visitors have to be over 16, and my immune system has been effectively wiped out, so at this point my doctors – and they are legion – have forbidden any contact with children. It sounds like that restriction will be lifted soon, as long as the kids aren’t sick; given the turn my life has taken recently, I have absolutely no ability to feel things like hope or optimism, but I’m doing my best to hang onto this vaguely hopelike sensation hovering around the edges of my heart. A big part of me never, never wants them to see me like this, so anemic and jaundiced that I’m an odd shade of yellow-green, attached to several IVs and a horrible thing called a VAC (Vacuum Assisted Closure; I’ll save that for another time), as yet unable to bear my own weight enough to walk, in ungodly amounts of pain despite big bad drugs on board… just a mess, physically, and mentally unable to paste even a not-totally-miserable look on my face, never mind a smile. But a bigger part of me needs to see and touch and smell my babies, needs this desperately, so plans are in the works to get them here as soon as possible.
Willem is doing a phenomenal job of keeping the kids on an even keel… truly, I cannot overstate how well he’s handling this. If I’d harbored any doubts about my choice of life partner, they would have been completely obliterated by his sheer amazingness. Everyone wants their spouse to rise to the occasion (or better yet, never to have an occasion that requires rising), what with that whole in-sickness-and-in-health thing in the wedding vows. But I’ve always kind of been the primary parent – he’s a wonderful father, but he tends to step back and take cues from me – so I’d have guessed that he would probably do a decent job but in a skin-of-his-teeth, frazzled, Mr. Mom kind of way. Instead, he has managed everything – his work, Emily and Jacob’s school, Isaac’s care (including formula-feeding, a first for our kids), my medical care, communication with dozens of family and friends, the house, just everything – with true grace and skill. The kids miss their mom, of course, but they aren’t especially anxious or stressed because Willem found the right words to tell my story and convince them that it will have a happy ending. No small feat, when you consider that one surgeon told him he’d never seen anyone be as sick as me and survive. Willem has never been a single parent for more than a few days at a time, and suddenly he has no idea when – or, last week, whether – his wife will come home… having come through the most dangerous moments, I know I will eventually return, so I can offer my condolences: the rest of you will just have to settle for second-best, because I won one hell of a lottery by marrying him.
My health details: immediately after Isaac’s birth, I began complaining of a specific, localized pain along one side of my abdomen. Had I not had my appendix out in 2003, I would have suspected appendicitis – it was that intense and sharp. Instead, I was told it was just gas pains. I was told it was just a torn ligament. I was told they believed I was simply medication-seeking. Despite repeated, pointed requests for a thorough physical exam, it took over 24 hours for me to see a doctor, and she gave me a cursory exam and brushed me off. I was discharged on Monday, March 8, three days after Isaac’s birth, as though I was a normal post-partum patient, despite the fact that I was, by that point, unable to walk the 10 steps from the hospital exit to the car. Isaac remained in the NICU (Neonatal ICU) because one nurse reported seeing him take a single “labored breath” immediately after birth, and the hospital’s policy is to keep any infant with any breathing-related symptoms for five days; in retrospect, my docile acceptance of this was a clear warning sign of just how sick I was – not to mention my reluctance to go up to the NICU to see him for any time outside of feedings. With Emily and Jacob, I didn’t like going to the bathroom in the hospital because it meant being separated from them; with Isaac, I felt so awful that I was certain my presence was toxic to him: if I didn’t have something contagious, I was sure my aura was so black and miserable that it would bruise his soul. He ended up remaining in the hospital for nine days, due to that respiratory distress, then jaundice, then a series of other pseudo=symptoms that meant nothing or everything, depending on your perspective.
They kept extending the date by which they would discharge him, and there was a boarding room in which I could stay on-site to breastfeed… but on the morning of my discharge, a NICU nurse told me that I really was too ill to be there: they couldn’t take any responsibility for potential falls, etc. This was the only time anyone acknowledged that I was very ill; up to that point I’d seen a series of nurses, OB-GYNs, pain specialists, physical therapists, orthopedic doctors… all of whom minimized my concerns and insisted it couldn’t be anything more serious than gas pains, or maybe a torn ligament.
On Monday, March 8th, then, I was summarily discharged. We stopped by the apartment to do some house-selling paperwork, but I simply could not handle the stairs. Eighteen steps from the street to the living room, and I couldn’t even begin to try. I sat in the car and sobbed, and I think that’s when Willem really realized that this was big and bad and wrong. The documents we needed were on my laptop, so he brought that out to me so I could find it and send him back in to print it out. We went from there to the bank to have it notarized, because there was simply no way I could go to New Hampshire the next day for the closing.
Now, I’m no superhero, but I’m somewhat stoic about pain. What good does it do to moan and groan about it? None at all, especially when you have a chronic pain condition and therefore would make whimpering a daily habit. But by the time we left the bank, I was beyond logic, beyond stoicism, beyond control. The roads are flat and well-maintained, and yet I nearly screamed every time we went over a manhole cover because the slightest movement was excruciating. We went directly back to Salem Hospital, this time to the ER. I was in the waiting room for over four hours, and I got to be that woman rocking back and forth, grunting and crying and begging for help; complete strangers were coming over to tell Willem they were praying for me, and at some point the ER staff moved me to a stretcher in a back hallway so I wouldn’t disturb the other patients.
A doctor finally deigned to see me, and within an hour or so of that initial exam and a series of tests and consults, I was sent directly to the ICU. There, the head of my OB-GYN group did a brief, exploratory surgery – which is apparently very rare, for doctors to appear in departments not their own, but he did an initial consult in the ER and remained with me the rest of the day, so I think he knew something was Very Wrong and was moving into damage-control mode. The surgery was quick, and it showed a nasty bacterial infection brewing exactly in the spot I had been complaining about all along. He basically opened me up, panicked, closed me up again and started making arrangements to transfer me to a bigger, better facility.
After an inexpressibly horrible, sleepless, terrifying night – with serious whole-body swelling and ongoing overwhelming pain, though with ever-decreasing skepticism from others about the reality of it – they loaded me onto a Medflight to Mass General Hospital, one of the best facilities in the world. Which is all well and good and I’m extremely grateful for its presence, but there are still a lot of pockets of bitterness and resentment for how it all went down. As they were loading me on the Medflight helicopter, I heard two things. One was one doctor saying to another – I don’t know who, it was just one of those cases where the rest of the room happened to fall silent at just the right/wrong moment – “I hope she makes it there in time for them to figure out what was wrong.” Past tense… as in, she’s clearly not going to survive but it would be interesting to know why. The second unfortunate tidbit I heard was the phrase “necrotizing fasciitis.” I didn’t know what that was, but I was pretty sure anything starting with necro- was not a good thing. That’s when I knew it wasn’t just a possibility that I might die and leave my babies and beloved behind: it was a statistical likelihood. I had time to tell Willem to find my Health Care Proxy paperwork (you just fill that stuff out with the will, you don’t expect to use it) and ask him not to let them do anything to my hands. They could do what they needed to the rest of my body, but I still needed to be able to touch my babies. An awful, awful thing to have to say.
I remember the Medflight; it took about 10 minutes to get from Salem to downtown Boston, skimming over all of the rush hour traffic. I remember landing and being incredibly addled and confused and in pain and angry. Very angry. Then they started throwing painkillers and sedatives and such at me and I don’t remember a thing for over a week. From March 9th to the 16th, nothing, and on the 16th I only had two split-second slivers of awareness, two moments of being able to open my eyes and then going under again.
On March 17th, I woke up and stayed that way for a while. Awareness returned. I was sedated and restrained and in pain and frustrated and confused, and my husband and sisters were there with me. Wherever “there” was; it took a very long time to find that out, because I was on a ventilator and couldn’t speak. Later that day, they removed the ventilator, allowing me to whisper – my throat was so dry and abraded that any involvement of the vocal cords just added more misery to the equation. The next morning, they removed the feeding and oxygen tubes, as well as the restraints.
I was sad and scared and confused, and I was covered – seriously, covered – with staples and bandages and IVs and weird medical equipment I couldn’t begin to identify. My hands are OK, with weak fine motor skills even now, but usable. My face is upsetting, because being in a medically-induced coma for a week does bad things to your lips, so I’m dousing myself in A&D ointment several times daily. I saw a mirror for the first time a few days ago, and I’m still scary to look at; I can’t imagine what it was like before, and no one took any photographs. And my feet… well, I may lose some toes. We’ll see.
I had a radical hysterectomy at age 32. I have a grapefruit-sized hole all the way through my abdominal wall on the right side. I am extremely weak, unable to reach a bedside commode by myself. My veins have been so intensely abused by a plethora of IVs that they had to use an ultrasound and call in a surgeon to insert my most recent line. I have had experiences in indignity that I would not wish on anyone.
I also have had friends rise to the occasion in every possible way. My sisters were here and amazing, as well as my dad and stepmother. My mother is wrapping up some things and planning to stay with us for as long as I need. My friends ran the blog and Facebook, called, visited, washed my hair when I couldn’t do so myself, brought food, I can’t even begin to list it all.
Realistically, there was a lot more bad than good, and most of the time that’s what I’m aware of, in painful, in-your-face detail. But there was good, and I’m remembering to pay attention to that.
Feel free to ask questions, I’ll answer what I can.
I’m exhausted. Words are hard work.
Thank you all, though. I love you.