He would be walking.
Or off running.
There would be talking. I'd hear "Mama." He would be repeating "No" or maybe a series of "Whys?"
He would be going to Lowes with his Dad. And Dunkies. "Helping" him in the yard.
Instead, he's in the next town. In a container, underground, smaller than some of my larger pocketbooks. A small, Styrofoam cooler, really. He has a photo of the 3 of us taped to his casket.
This is my reality.
I'm not sure what I can say or add about the grief of losing a baby. A baby I only got to know for 6 1/2 months "on the inside" and three hours out.
Two years ago today I gave birth to him. Diagnosed with severe pre-eclampsia and HELLP Syndrome which landed me with an emergency c-section, I can remember everything like it was yesterday.
Two weeks before delivering, nearly 24 weeks pregnant, I was sitting in bed watching American Idol. I was feeling well and enjoying being pregnant that night. So much so that I made my first, stereotypical pregnant lady gesture and leveraged my delicate condition to have Mike go out to get the soda & ice cream for a Coke float. Mike asked, "Are you serious?" just to make sure I wasn't just trying to be funny. He obliged with the trip to 7-11, came back and made me one. I guzzled it down.
Shortly after drinking my Coke float, I started to feel some pain in my ribs/chest. I wasn't sure what was going on, although I had experienced something very similar 2 weeks prior.
The pain of 2 weeks prior to the Idol night I'd described like a straight shot down my lower esophageal region and straight down my chest. I took a shower, thinking that would relax pain in my chest. At some point, I threw up once. Maybe twice. I did eventually fall asleep, but would wake up again. After being unable to get comfortable for the night, I went to the ER where they thought maybe a gall bladder issue. Of course I had started to feel better when I got there. After running the standard tests, and an ultra sound on the gallbladder, they said they saw nothing. My BP was a little elevated- 140/80-ish, although that can occur when a person is in pain. I was showing some protein in my urine, but not a high enough level to cause concern, and it was also brushed off since it was the early a.m. urine, which tends to be more concentrated and give an overstated result.
Back to the night of Idol, the pain was similar but this time was going under my right breast, in the ribs. Once again, I couldn't find a comfortable position and again. I started to vomit. Based my experience of the night/E.R. two weeks prior (and had had another occurrence between that point, that was relieved with a hot shower), I thought, as everyone had thought and told me, that this was probably severe heartburn. Maybe throwing back a large Coke Float like it was a shot hadn't been my best idea.
This time though the vomiting and pain kept coming, despite all the showers I took. I couldn't sleep. I was pacing the house, going from bed to the couch and back. Midnight, 1:00 a.m., 2:00, and on, from the couch, I'm trying to keep hydrated but I couldn't keep a few bites of Popsicle down. A bucket was now next to me. Later, a bathroom event where both ends were jockeying for the toilet position. I was really uncomfortable and getting into weird positions, including child's pose trying to stretch out the pain, to make it stop. I decided I'd call the doctor "first thing" in the morning.
No, I don't know what the hell I was thinking either.
The symptoms had started at around 10 p.m. Wednesday night. A little before six in the morning, I called my OB's office and got the answering service. I explained my symptoms: the pain in my right ribcage, the constant vomiting, not being able to get comfortable and that I was about 24 weeks pregnant with my first.
The OB who returned my call on call was not my doctor. Focusing on the detail of the pain in the chest lead her to believe I needed to be seen by... my primary...for a chest x-ray. I would be remiss if I didn't say this makes me bitter, since I was actually giving her some clear markers of pre-e/HELLP: pain in the right rib area, vomiting, first pregnancy. I called my primary, got the answering service, they called back. That doctor, knowing nothing of my medical history, demanded that I get myself to the E.R. as fast as possible, do not bother showering, nothing. And no, I was not gong for a ridiculous chest x-ray. Looking back, I think they knew.
After the calls back and forth with OB and primary doctors' offices, I arrived at the local hospital around 8 a.m. A full two hours after I called, and now 10 hours after the initial onset of physical symptoms.
Let it be known, a pregnant woman complaining of chest pain will cut any waiting line.
I gave a urine sample and eventually got a bed and my blood was drawn. They hooked me up to a BP monitor. The on-call OB, a kind man who was the hospital's high-risk specialist, and a doctor from my OB office who happened to be at the hospital that day, were in my room. The BP monitor gave the reading: 190/101.
Stroke high. Seizure high. Coma high.
Two pairs of doctors' eyes bulged at each other. The set me up with an IV of magnesium sulfate. "The Mag", as it's known, was to keep me from having a seizure.
Urine showed protein, and the blood work showed high liver enzymes and low platelet counts. I was really bad shape.
I'm told I have severe pre-ecplamspia and HELLP syndrome. I didn't know what that really meant, since I didn't get that far in the books or likely I glossed over any of those details. I'm confused, in denial, or both, because I'm a really healthy woman. How can I be in bad shape?
I'm told they're doing their best to buy me time. Hours, not days or weeks. Words like "edge of viability" are thrown at me. I don't really understand, since two weeks ago I had pretty much the same deal and they sent me home.
A steroid shot was given in my butt to help develop his lungs. I'm in a dark room now, my sister also with me now and I'm trying to keep it together. The doctor, about to step out of the room for a minute, hears me squeak, "Doctor, do you think there is there any chance you might be wrong?"
In a most compassionate, soft tone, "Jennifer, I have been doing this for many years, and when I see something like this, I know I'm right, but I hope I'm not."
I start to cry.
The good news, if there was any to be had, I'm not only not getting worse, I am, in fact, stabilizing. The Mag is working, and my BP is brought down to a somewhat acceptable level. A really bad migraine started to emerge, but the nurse said that was expected given how high my BP had just been. I mentioned to her that I had been getting them the past few weeks, and I'd needed Tylenol with Codeine to cope. Those were likely early warning indicators of the pre-e, she says. I see an ultrasound of my son being active and normal.
The kind doctor says I need to be transferred where I can be monitored for high risk pregnancy 24/7. I make the decision to go to Mass. General.
I get my very first ambulance ride. I make chit chat with the nurse who's riding with me, since I am feeling better and convincing myself that this is somehow a temporary blip to recover from. Despite the sirens, traffic into Boston slows the ride considerably, but as luck had it, a state trouper was in that traffic and I receive a free police escort for the rest of the way.
At MGH and out on the stretcher where all the ambulances are, they detain me, shielding me from another ambulance's patient. Apparently what was coming in was something too gruesome of heartbreaking for me to see. "You don't want to see that."
On the Labor & Delivery floor, I'm given raw, frank data of my condition and my baby's chances of survival. The bottom line is, at 23 weeks, 5 days pregnant, they're going to round me up to 24 weeks and try to keep me pregnant. Babies delivered prior to 24 weeks, the benchmark for "Edge of Viability" do not typically survive, and the risk too high for the mother to try to keep them inside. It would not take much less for them to delivery me right then and there. I've responded to the Mag well, but really, I'm being given a chance to keep my baby alive because of the ROUNDING ISSUE. A decimal point.
This is also remarkable considering the only way to "cure" pre-eclampsia and HELLP is to deliver.
I see the next day, and am given another shot of steroid for the lungs . Twenty-four hours later I will be considered "Beta complete". I'm taken off the mag drip, and on the lowest dose of BP medication. My BP behaves. I do a 24 hour urine sample. I'm still showing protein, but my blood work is showing signs of recovery to acceptable levels. I still have occasional headaches, but not as intense. The high risk OBs start to wonder how this is possible, as it is not normal pre-e/HELLP behavior for someone who arrived so extremely ill to bounce back with so little intervention or without delivery of the baby. So they begin to test for viruses, since they now have the time to do so, including Cat Scratch Fever. I don't own a cat.
I've met with the neonatal doctor and given percentages on survival rates and health stats. The fact that I am "Beta Complete" is a start, but the gestational age, his estimated weight (around a pound) and the fact that he is a male, Caucasian baby (the most vulnerable in terms of survival) are all going against him. The best number I'm given during my stay was 15% survival- and even at that, not without the likelihood of severe disability.
For most of the next 2 weeks, there's not much in terms of excitement, and I settle into a routine. No excitement= good news. I become an expert of numbers for various blood stats and chart my BPs. I am comforted that I am puzzling the team of high risk docs. I am Super Woman. My body has defied the logic of this disease. I mentally fist pump myself for confusing intelligent people and cruel diseases. I'm determined not to be a statistic.
I go through 2 roommates - one who went into labor while I was zonked out on Ambien. There were the small victories that came with being stable like not getting blood drawn multiple times a day to only a few times a week, or being taken off the BP cuff that went off every 20 minutes. I get permission to shower and and get fresh air. As time goes by, I'm more confident that I'll ride out a good chunk of my pregnancy until he was born, safely. I eye 28 weeks.
One advantage of the hospital bed rest & surveillance was I got to see my son everyday with ultrasounds, getting scores of consistent 8/8s, the highest he could get for his age.
There was one small thing, literally: he wasn't gaining any weight. When my BP shot up as high as it did, there was damage to the cord that was feeding him. It constricted the capillaries. The damage was done. The blood was being pumped out twice as fast as it was coming in. The analogy used to explain his daily ordeal was that he was having to run a marathon every day to get the nutrients just to survive. I dream their measurements are off in his favor.
The morning of April 23rd. A Thursday. A full two weeks after admission. 25 weeks, 5 days pregnant.
I have a blood draw very early in the morning and I go back to sleep. They come back for another draw and I, for reasons I couldn't even tell you then, get up out of bed to get and eat a single peanut M&M from a bowl by the window. The nurses advises me after seeing this not to eat anything. Something is up. Why do they care? Breakfast is coming soon.
The early a.m. blood showed bad things: dropping platelet levels and liver enzymes going back up. If confirmed by the 2nd draw that morning, I'm going to deliver.
The 2nd blood draw of the morning confirmed their initial finding. I am getting very sick again, even though I feel perfectly normal. However, the delivery plan has a little wrench in it, as that 1 peanut M&M at 8:00 a.m. pushes the surgery back because the requirement of 8 hours empty stomach. I had not eatne anything before breakfast for 2 weeks. Today I have 1 piece of candy. Had I not had eaten it, I would have delivered around noon. That 1 M&M bought me about 4 more hours with my son kicking in my belly.
I cannot tell you how stupid yet profound that scenario reads back to me.
A single M&M bought me a few more hours with my alive son.
I kept in my mind that I would not freak out until there was something to freak out about. I remember I watched Ellen while awaiting the 2nd draw's results, trying to keep my stress level low. She had Lindsay Lohan on that day, which was good, because Ellen called her out on her going to the clubs even though she was supposedly getting sober/in recovery. I love people like Ellen calling bullshit on people like Lindsay. There was also a silly bit of women in Sumo-like costumes chasing a football which had me laughing pretty hard. I prayed that my son could hear his mother's laugh, and not feel worried. I didn't want to send him a bunch of stress hormones, and I heard laughter is good for a person's well being, and this was all I could do for him at this point. I later told kid-appropriate jokes to Mike during surgery, so he also wouldn't worry about me.
I see how that can sound really, really dumb and naive, or lacking of feeling or I lived in some fantasy world, or I don't know, unprepared, but you don't know until you're in the spot. This was all I could do for him: provide a place where his mom wasn't freaking out. I didn't want him to hear me sob or become hysterical. If shit got bad, if he was to die, I could breakdown later. It wasn't over til it's over, as far as I was concerned.
I delivered my boy, Daniel. It bothers me I still can't call him Dan or Danny or D-Money. He's Daniel to me for some reason. Born a tiny 1 lb., 2 oz., just over 13 inches at 4:22 p.m. He never cried. His heart rate was not strong- around 80 bpm, but it was beating. He was not dead. They performed CPR to increase the HR. The doctor informed me he was likely to die in the OR. As he was telling me this, my son's HR improved and the team called him over. Once again, I fist pumped my logic-defying DNA I'd clearly passed on to him.
They had to rush him to the NICU, but before they did, they stopped by my head so I could see him in the isolet. I looked at him, he looked at me. His eyes were open. It is a moment I can still replay in my head.
In shock, and time seeming to stand still, all I could muster was a series of "Oh my God"s. I'm not sure I even said, "I love you."
They left for the NICU.
Post-delivery surgery took longer than expected due to a bleeding fibroid. Once back in a recovery room, my body temp dropped and they have to wrap me in warming blankets to get me back to normal. Mike eventually was given the green light to leave me to be near Daniel. By the time Iam moved to see him in the NICU, he has passed away. Two hours and 58 minutes later. I hold him.
I sob and become hysterical.
The rest of my story is about as shitty as one could expect, since a parent isn't supposed to bury their child. As I said I can't really add anything of value to what grief is or how to cope with such a loss. It's different and yet the same for everyone. People comment about God's Plan but I can tell your grieving parents think their plan was better. Go home with a baby, not a memory box.
I wrote this for a few reasons.
The pre-ecplampsia/HELLP syndrome stuff - Rare enough but present enough I should have known. I didn't really remember seeing too much on it, maybe I remember reading about severe swelling, which I never had at all. And typically do not show as early as they did for me. I didn't have any really at-risk ractors:
- First pregnancy (excluding miscarriages)
- High blood pressure, kidney disease, lupus, or diabetes prior to pregnancy
- Gestational diabetes
- Multiple gestation (eg, twins or triplets)
- A family history of preeclampsia in a sister or mother
- A previous history of preeclampsia
- Age under 20 years and possibly age over 35 to 40 years
Okay, this was my first pregnancy but I was otherwise perfectly healthy and then 35 when I got pregnant. I don't see how one can get around "first pregnancy", so it's safe to say, even if I was educated, I would have been looking out for this. Now future preganancies I am considered "at risk.".
After he passed, I remember reading a comment left on a blog from an OB nurse that said those offices don't mind the multiple calls from the hand-wringing set; they worry about the ones that don't call. I can't say if I had called or gone to the E.R. much earlier if that it would have changed the outcome, but the fact that I can't say definitely 100% one way or the other is something I carry with me. I really wish I had called sooner. This was not the time to suck it up or try to deal with the pain on my own, even for 8 hours.
Mostly though, I wanted to write this because of this fragile, sweet, beautiful boy who mattered. He was here, meant something to quite a few people, was so wanted and so fiercely loved. I just wished I could have been his mommy, here in the tangible sense, for a whole lot longer.