Trying to get by.

We're all sort of numb here, in limbo, trying to distract ourselves with busywork.

My ability to cope comes and goes. I'll be doing all right for a while, and then something triggers the grief. I go from acting normal to hysterical tears in seconds. It's very, very hard. Maddie's funeral will take place on the day she would have been 24 weeks old-- old enough to have the steroids that probably would have saved her life.

I'm to the point now where I can bear to look at her pictures. She was a beautiful, beautiful little girl. The scowl on her face when she was born made her look exactly like my father...really, she looked more like Justin and my father than me. She had Justin's hands and long legs, and his toes...one slightly crossed over the other. All of the nurses were asking me whose toes they were. She had a little fuzz of hair and soft, velvety skin. Her mouth was like a little pink rosebud...she was perfect, just perfect. Just too tiny to live.

I don't usually do this, but I'm going to endorse a worthwhile charity here. There is an organization that makes tiny blankets and layettes for the preemies, and they provided the burial clothes for my daughters free of charge. They were hand-sewn and impeccable in quality. So much time and love must have gone into making all of those teeny-tiny quilts, blankets, dresses, bonnets and booties. It was such a comfort being able to dress my tiny daughters in clothes small enough to fit them. The organization accepts donations to purchase yarn and sewing supplies, and when people asked for a charity in lieu of funeral flowers I was happy to pass on the information. If any of you are interested, I can attest to the comfort and benefit that they provide grieving mothers.

The organization is Touching Little Lives, Inc., and they accept donations on their website.

We have a very rough time ahead...I have absolutely no idea how well I'm going to be able to handle this funeral, but I'll try. I owe it to my daughters.

Our daughter Madeleine has died.

I went into labor on Wednesday and we couldn't get it stopped. I had an internal infection that would kill both of us and I had no choice. She was born on Thursday morning and I got to hold her for an hour, then I had to have emergency surgery for blood loss. She died in my mother's arms while I was in surgery.

She was a beautiful baby and held on for a long time. She was born with a determined frown on her face and I'm certain that if we had only made it a week or so more we would have had a chance.
We cuddled and kissed her and made sure she knew she was loved in the short time we had her. Her funeral will be a week from Saturday; she'll be buried with her sister.

Please bear with me as I'm not really functional right now. I appreciate your kind thoughts. Right now I just don't want to think.

Crisis, Mother's Day Edition

I start bleeding.

We fly back to the maternity ER.

I have an ultrasound. I have an exam.

Maddie is fine and has declared the contraction monitor her new enemy. I can see it bounce when she hits it. Everything looks good, which in my case only means no higher level of bad. The cerclage is fine.

On a related note, my hair is going silver at an accelerated rate.

When someone you know loses a child.

I realize that this situation is weird, bad and awkward for everyone involved. Now here comes Mother's Day, with all of those connotations, and the awkwardness factor goes up bigtime.

People have been wonderful about sending me messages and doing everything they can to be supportive. I'm so thankful for everything, even though it must seem like I'm really slow with responses (I can only spend a little time a day on my back, and it's next to impossible to type or do anything else when I'm on my side). I do read all of the messages and I'm trying to catch up with answering them. I am also extremely thankful to all who helped us, sent things, and attended Cécile's funeral.

Most people who send me messages are very frank about being at a total loss as to what to do or say. I appreciate the honesty, and we're all in the same boat...I don't know what to say or do either. I don't know what the right answer is, and I can't think of anything to request. I'm in a really, really weird place emotionally right now.

There are articles out there about how to behave when someone loses a child. I kind of skimmed through them, in the hope that they'd give me some clue as to how to behave myself. No luck. At the moment, all I know how to do is be Madeleine's life-support.

My brain isn't anywhere near fully functional. It can snap to attention in crisis mode, which has happened more times in the past month than I care to remember, but I can't really follow conversations and my reading comprehension has gone down the drain. I don't know how much of it is boredom and how much is the introspective grief aspect, I just know that I wind up staring blankly at a catalog page for 20 minutes until I gather myself enough to toss it aside.

At the risk of sounding really negative, I've gathered some experience in what not to do.

• Don't say "you can always have another one". It doesn't work that way, especially when you have fertility problems to begin with. And it's not a matter of simply producing a replacement...there is no "replacement". It's a child, a completely unique and wonderful miracle, a little person who had their own personality in there and communicated with movements and kicks. It's a child whose ultrasound printouts were collected just as avidly as anything cranked out of a portrait studio. That child was a person, a daughter, all possibilities and love and hope. You can't "replace" your child any more than you could replace any other loved one, and it's callous and hurtful to insinuate such a thing.

• Don't be overly casual or act like there's a deadline for the mourning period to end. In the beginning, I tried to give the benefit of the doubt. I thought, "Well, they're probably thinking that if they act like it's not a big deal, it will keep me from getting emotional and upset". Doesn't work. Losing your child is a Very Big Thing, and no, people shouldn't estimate that a parent should be over it in a couple of weeks.
  

• Babies deserve all of the respect for the dead that you'd give an adult, especially when a grieving mother is right there. This is on a sort-of-related note. When I delivered, the OR nurse was extremely kind. (She actually went on to request to be on my case for subsequent surgeries, and I very much appreciate her.) She inquired respectfully and discreetly concerning my wishes for burial. She also made the special effort to care for Cécile herself, getting her ready for me to hold. Of course she had to get back to the OR, but it was still jarring when a completely different nurse came in, casually pushing the bassinet ahead of her and saying one thing after another to convey that she was an old hand at handing over dead babies...which I very much didn't need right then. She spoke about Cécile as if she was a cut of meat and even tried to point out what she must have thought of as fun curiosities about my daughter's anatomy. I was not in the mood. I was especially hurt and angry when she pointed out my daughter's legs. Due to the brutal circumstances of the birth and the fact that she hadn't yet had the chance to acquire a layer of baby fat, Cécile's legs were a vivid red color. The nurse described them as "beefy red" and flipped forth the fun fact that "they all look like that when this happens". I don't care how "they all" look when it happens, I care about holding my daughter for a few precious moments. She went on with anecdotal crap about how some mothers wanted to keep the babies with them for hours, and so on. When she came back for Cécile, she said, "Ready for me to take her to the morgue now?" Just like that, as casually as if she was asking if I wanted orange or cherry jello with dinner. That moment will be burned into my memory forever.

• Talking is fine, if the parent feels like it, but don't pry for all the gory details. I completely realize that there's a gruesome and maybe guilty pleasure for people in the circumstances of a death. Literal morbid curiosity. It can be like a car accident with looky-loos craning their necks, or maybe people want to compare it with their own experience to help assure that it could never happen to them. Whatever the reason, I understand it's a basic human impulse and I accept it. However. You can have an impulse and control it. There are bounds of propriety. Most people know better than to specifically pump a newly grief-stricken mother for each blood-soaked detail of the birth and death of her child. I was surprised at how many did not. One individual in particular was relentless, asking specific and very inappropriate questions.
  The gleam in their eye said it all...this was entertainment, this was juicy gossip fodder. I resented it, I was terribly upset by it, but the fact is that I was also very tired and not up to fending it off. I was too physically and emotionally exhausted to hold out for long, and eventually I gave up and mechanically answered every single (horribly inappropriate) question. I felt too generally defeated to tell this person that it was none of their business. Afterward, I felt as if buzzards had picked at my soul. Truth be told, it's the closest thing that's yet come to sending me off the deep end entirely. My sense of anger, resentment, hurt and sarcasm runs so deep that I feel like I can no longer be responsible for what I say; the longer the pain festers, the angrier I get. When told that a second, very similar individual wanted to speak to me, my first inclination was to angrily lay out the collection of bloodstained baby blankets, tragically pitiful photos of my dead daughter, and maybe even the death certificate. I figured the person could just poke through those and get their jollies instead of prying it out of me, and I could get some rest instead. Reasonable? No, of course not. But we're not talking about reason here. We're talking about very profound pain. . My point: a mother will do anything to defend a deceased child just as she would a living one, and gratuitously prying out the bloodiest details of that child's short little life amounts to an attack. Expect that mother to respond accordingly.

• "Dead baby" and "fetus" jokes are not funny, nor are remarks about population control, Darwinism or anything of that nature. Assertions that no one, including a grieving parent, will stop someone from their supposedly god-given right to make fun of the infant's death if they please, are heartless, inappropriate, and completely inhuman. You would think that this would be a no-brainer to everyone. Unfortunately, that is not the case. I wish I was kidding. I wish karma were a surer thing.

• Grieving parents are living a dual reality. The pain and flashbacks don't ever go away, even if the person looks as if they are functioning normally and "cheering up". Don't assume that because the person is functioning on some level, that they are "over it" and everything is okay again. It's not, and in a way it never will be, but the functional capacity increases gradually with time. I can stare blankly at TV, web forums, Youtube or whatever to pass the time, and I can converse about trivial matters to pass the time, but it pretty much ends there. I see Cécile every time I close my eyes. I see her little face in my dreams. The slightest trigger brings it all back, and I can go from complaining about an irritating commercial to crying hysterically in a matter of seconds. It's anger. It's memories. It's hormones, and pain, and a huge sense of cosmic unfairness. It can be lived with, but it never goes away, and can come out of nowhere when things looked as if they were getting better. (Although it's by no means an excuse, the man who had a breakdown and shot the Amish schoolgirls was angry at God for the death of his premature daughter, although the birth and death had taken place nine years before.)

• Please respect the religious and philosophical views of the parents. This is not the time for recruitment, or for insinuating that if they were the "correct" religion that this would not have happened. The parents might not share your view that the death of their child is a sign from God that they need to change religious affiliation. If you do not think the parents will be receptive to this sort of message, don't press it. It can feel like predation.
  

As I've said, I've learned plenty about what not to do, but as far as what any of us should do, I'm at a total loss. I don't know what should happen when a woman is pregnant with twins and delivers one prematurely but retains the other against all odds. Even the physicians have told me that there's no real protocol for my situation. We're all at a loss, really.

Even so, I can recognize and appreciate good intentions, and thank you for yours.

A (very) small bit of good news.

Almost 22 weeks now, and Madeleine's still hanging in there. I play music for her. She wriggles in delight (I think) to the Ramones, Tchaikovsky and old French ye-ye songs (right now she seems to be into "Sacré Charlemagne"). If I play something she doesn't like, I get one hard and swift kick. She especially seems to hate Nico, which gives me hope regarding her musical tastes.

We had a very small bit of good news at this week's appointment. Things are still a very, very long way from being okay. However, Maddie had a small pocket of amniotic fluid trapped near her face, where she needs it. She also had amniotic fluid in her stomach and bladder, which means she's taking in fluid and her kidneys are functioning in some capacity. A previous concern had been that perhaps one of the drugs I had to take had destroyed her kidney function entirely, so it was good to see that little bladder dark with fluid. She remains very active and has a temper, striking out with little fists and feet against anything resting on my abdomen, including the ultrasound wand.

S0 an absence of bad news is good news, and physically, apart from the unknown lung factor, she's looking wonderful. Blood flow through the umbilical cord was perfect and I still have no sign of the infection everyone was expecting. I'm trying to make it to week 24, when I can have steroids that might help a bit with her lung function. After that, we'll have done all we can possibly do, I think.

We know that her lung development is compromised due to the lack of amniotic fluid. We just really have no way of knowing how compromised. Right now, I'm keeping my fingers crossed for "not fatally". But it might be the case. I'm glad to have a team of expert specialists and a hospital with a good NICU. It's the best I can offer her.

We're thinking now that Maddie's amniotic sac ruptured the day I left the hospital. I reported the sensation, they found fluid, but at the time they thought it was leftover fluid from my other daughter. Maddie had plenty of fluid when I left, and no fluid 2 weeks later. It was probably a very slow and gradual leak.

It's frustrating. I regain some amniotic fluid, then I stand up or rest on my back at just the wrong moment and lose it. Then all I can do is tank up on fluids and curl up on my side for hours, trying to keep fluid pooled around Maddie for any length of time, grasping at straws really. I can't do much typing or anything else when I'm on my side, so this isn't a terribly productive sort of bedrest. My primary function right now is serving as Madeleine's life-support device, and I'm fine with that.

Thanks, everyone....

I appreciate all the support and kind thoughts after the passing of our daughter Cécile.

I wish I had some good news to share for a change, but I don't. Our surviving daughter Madeleine is still going strong, but has very little amniotic fluid around her. We're unsure if this is due to a second sac rupture and a slow leak (which is my guess) or an aftereffect of some meds I took to save her life, which may have damaged her kidneys. The lack of fluid doesn't bode well for her lung development, and if her kidneys are damaged that could be even worse. I made the decision to continue the pregnancy and deal with whatever comes, with the understanding that it will almost certainly not be a perfect outcome. I can only hope she's a fighter like her mother.

I'm doing all I can physically, but emotionally I'm stretched rather thin. Cécile's birth was a particularly brutal one and the flashbacks are devastating. The memory of her birth, and of being completely unable at that point to protect or save her, is a constant torture.

To make things worse, I'm currently ensnared in a big insurance mess. When I became pregnant I was enrolled in a state plan that was to supplement my Medicare coverage. The plan involved choosing an HMO that would work with my current perinatal care, which I did. Then we began getting letters that said we had not chosen a plan and that one would be chosen for us.

Every time we received one of these letters, we called the 800# and tried to straighten things out. They would try to fix the selection, then we would receive another letter. Today I tried to call again and spoke to a man whose ignorance was frightening. I tried to explain that I was disabled, on Medicare, and that the state insurance was intended as a supplement. He explained with much patience and derision that I needed to learn the difference between the state health plan and Medicare, that he was certain I was mistaken about having Medicare, that Medicare is for old people. He finally referred me back to my caseworker for a talking-to about the difference between the two entities.

I wished I had taken his name as I usually do. I called my caseworker and explained my frustration, and tomorrow will begin another round of calls to try and straighten things out. How does this man have a job at a government insurance call center and not know that people can be on Medicare for being disabled?

Meanwhile, I'm doing all I can to improve Madeleine's odds, pushing fluids and sticking to the stricter side of modified bedrest. We'll be checked weekly. It's a helpless, horrible feeling.

Our daughter Cécile has died.

Our daughter Cécile was born on Sunday, April 13, after a premature delivery. She was too tiny to breathe on her own and died shortly after the cord was cut. She was a beautiful little girl, right down to the smattering of vessels on her nose that looked like freckles.

I have been in ICU for the past week trying to save her identical twin sister, Madeleine. I just had surgery today and was moved to a normal maternity room. It's been a terrible week and we appreciate your kind thoughts.

Cécile's funeral is tomorrow afternoon. I'm unable to attend due to strict bedrest and Mom is here with me in the hospital.

Thanks for your understanding and compassion during this difficult time.