Twinkle Little Star

Hospitals, Kiddie PT, Hospital, Mars

Before I say this thing I was thinking today and you all think I'm nuts, let me just say that of course, it sucks to be sick. It sucks to have pain. It sucks to have your life stalled by hospitalization and illness.

But D and I and the kids are comfortable around hospitals. We are comfortable around healthcare people. More than that...we are extremely grateful for many of the health care professionals in our lives. Sometimes, we even enjoy them and getting to know them and their company. We have an affection for them and the whole health care system.

Not that there aren't certainly terrible problems with it, and not that we don't on occasion run into an asshole doctor or nurse. I'm not talking on a systemic level that we have an affection for health care, a comfort in it. On a systemic level, it is quite fucked up. But on a personal, day-to-day level, there is comfort there.

I was just thinking about this today, because I'm getting tired of hearing from a group of women about how they would NEVER have their baby in a hospital and hospitals are for sick people, not pregnant women and how it is so unnatural and sterile and awful and how could anyone willingly have their baby there?

Okay, first of all, I have no problem with the decision to give birth at home. If that is where you feel comfortable, great. I assume you have weighed the pros and cons and evaluated risk and made an intelligent decision based on your needs. Women have been treated crappily in the whole OB field. And women should get to make whatever educated decision they want to make about their own pregnancy and birth. As should all people who utilize health care. So I'm not saying there is anything wrong with having your baby at home.

But, I wish some of these home birth advocates could understand that this is an individual decision and a home birth is not right or even plausible for everyone. It is luck and (in our society) a little bit of privilege that allows some women to be able to do this. In a perfect world, it would be nice if everyone could give birth either in their homes or in lovely, tranquil birthing centers with angelic midwives...and also have a Level 1 NICU and trauma team available if need be. In a perfect world, we should not have to choose between the two.

But to say that hospitals are for sick people and not for pregnant women is to not only ignore people like me, who were in the middle of pre-eclampsic, retina-detached, double-breach twin, premature labor--hey, me and my guys could be dead without a medicalized birth. But also it is to ignore the fact that before giving birth in the hospital was common-place--a whole lotta mothers and babies DIED in childbirth. A whole lot more than do now. Get your ultrasounds and you amnio and whatnot, but then say that the medical field will only harm you in birth is a little hypocritical. (Like who knows if amnios are traumatic for the foetus?)

And I understand that some people just aren't comfortable in the hospital setting and will actually do better during labor if they are comfortable at home. And then a home birth is how it should be for them.  But this is not the case for everyone, even if there are no significant high risks for the birth. But for others like myself (even if I was carrying a low risk singleton) the hospital is where I am most comfortable. And my feeling is, if mom is happy, baby will be, too.

D and I depend on health care workers a great deal. We know that the vast majority of them do this work because they care. When my mother was ill, my family kept commenting about how nice the healthcare workers are like it was something above and beyond and unusual. I thought that was a sad statement by them. This is what it is to work in a caring/helping profession. This acceptance of bodily fluids and grossness and dysfunction is part of that caring. Sure their are crabby nurses (and doctors are a different beast, they are often driven more by ego than caring--but still there has to be at some level, a need to help people) but in general these are a good lot of people to be around and trust your life with.

Its not the fact that people decide to home birth that bothers me. Again, I think that's fine. But even then, you know you will have the hospital as back-up (and hopefully you make it on time). But don't use health services for all your prenatal and as your emergency back-up and then bitch and moan because god forbid anyone should dare have their baby in the hospital. The second your baby is wheezing with a 105 fever, you are going to be right there. So, choose whatever kind of birth you want, but quit putting down those of us who choose the hospital and the hospital (that you depend on) itself.

</rant>

***************

In other news, Aaron and Naim went to their first tumbling class on Monday. It is really more like kiddie PT to me. Aaron was kind of a little pisser during part of it. He flung himself down on the mat and refused to participate in several things. But he got better at the end. Naim was absolutely amazing. He followed directions, he participated in everything. He smiled and laughed and had fun. He proclaimed "IIIII did it!" after every little accomplishment. I think he might be in love with the instructor.

I think the main element that helped Naim was that it was quiet. I mean, quiet besides the teacher and the six kids. The room was huge. Half of it was empty and the other half had balance beams and mats and gym stuff in it. But it was quiet and focused and structured. He found his element. I about saw confidence growing out his ears right before my eyes.

Then, the instructor even made me fall in love with her because she came up and talked to me afterwords and could already distinguish which one was Naim and which was Aaron and treated them as two separate children. This is my pet peeve with others now. They are old enough and different enough and different LOOKING enough that there is no reason to be lumping them together as "the twins" anymore. I mean, its okay if people get their names confused at first or lump them together when it is appropriate to. (i.e. Are you bringing the twins with you?) But the more I thought about the lady from Sporties for Shorties and how she insisted that "they just weren't interested," the more I thought that she must have meant Naim. There is no way you could have said that Aaron wasn't interested. Naim? okay, yeah maybe. Because he is shy and slow to warm up to things. So, that irritated me a bit because she couldn't even distinguish between the two and separate them out as individual kids. So, anyway, that was a plus for this program. She actually got that I have two separate kids, not one "twin" in two bodies.

And I had told this woman nothing about my kids beforehand (I had not signed up yet, I was there on a free pass coupon) and she was not phased by Aaron's behavior (which definitely could have been described as disinterest, although knowing Aaron, I would describe it as Taking a Stand Against Some Strange Thing Mom Forced Me Into Without My Permission So I Refuse to Admit that I Might Like It.) I was a rebel kid. I understand rebel kids. Aaron is a rebel kid. Anyway, the teacher picked up on that and was confident, as was I, that he would be fine in one or two more classes.

She also got that the kids couldn't do some of the things the other kids would do. Mainly anything involving jumping or springy legs.  She was unphased and understood that this was not an effort or interest issue, this was a developmental issue that needs work. This class is really perfect for that. The kids turned out to be between two and a half and three and a half. So in all other ways, my kids are right in there size wise and maturity wise and what not. Its just the gross motor that they are still behind on. But this is exactly what they need for that. These classes are getting a little pricey. I almost wish I could dump Sporties for Shorties and have them do this one twice a week. But I already paid for SFS. But it gets over at the beginning of March, so maybe I'll quit that then and just do this. We'll see how much they end up liking SFS.

As much as I think the kids will be happy with tumbling class, I forgot that I might not be able to live through the moms. Not that they are not nice or anything...just hard for me to relate to. First, I am shut in a small, darkened room with them as we stare at our precious, preciouses through a two way mirror. Very hard for me to communicate in there. Second, I live in a neighborhood where the main employer is a very famous high tech company that pays its empoyees really well. These women are well-dressed housewives with (mostly) daughters in ballet class here and...well, just the level of dance studio gossip that I was able to decipher? It was way more intense than I can handle. Reminds me of skating moms. I could care less about so-and-so and her daughter and what class she got to advance to. I just don't have any idea what to say to these people. They asked me which kids were mine in the class and I said,  (jokingly) "the blond over there who is waving his hands around so the teacher will help him off the tumbling mat and the one over there who has flung himself down on the mat in protest."

"Oh," they said. I couldn't think of anything to say after that.

****************

Back to the hospital...it looks like D will get out on Friday. He will be coming home with an open wound and a PICC line and IV. So I'm not sure what my responsibilities will be there yet. Probably nothing with the wound as home health will cover that. But probably some kind of stuff with the PICC. I'm hoping they put him on one of those all day infusion pumps so I would just have to go over once a day and change the vanco and flush the line. I'm hoping not for twice a day. And I'm hoping for no wound vac. That the wound will just heal on its own no problem. I loathe the wound vac.

D is a bit grumpy as his spasms are not under very good control. He says it isn't terrible, but he is getting anxious to get out of the hospital so he can control his own medicine. He thinks he can get better control on his own than the way they are doing it. He is going to need to rest and lay down a lot, so I'm losing my main kid break device. I told him to do whatever he needs to do to get better and manage this, just don't be a damned martyr about it. He tends to agree to things I ask and then blame me when he has overdone it. I keep telling him, I'm not the boss of you... you manage yourself, you set the boundaries, you let me know what you can and cannot do, BECAUSE I AM NOT OMNISCIENT. But in fairness, that means that I will be extremely limiting my asking for stuff or to go do stuff or whatever. Hopefully the next several weeks will go fast.

For some reason, we always take pictures at the hospital. I think it is because we run out of things to do and someone always has a camera. (Aaron is anti-camera right now, so there are very few pics of him.) We went up Sunday (pre-haircuts) and then today (post haircuts.) The biggest hit? The ninth story window and the itty bitty cars below. That, and pushing buttons on the 8 elevators we ride to get there.

D and Naim lounging in the hospital bed with the laptop, of course. Aaron standing on a chair looking on.

Aaron enjoying the view.

Naim hanging in the wheelchair.

Naim practicing his breathing with one of those lung exerciser things that I can't think of the name of.

Everyone reading Dora books on the bed.

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Bonus from Aaron:

I've been working with the kids on memorizing their whole name and address and stuff. Here is what Aaron said today:

Me: What is your name?

A: Aaron

Me: What is your whole name?

A: Aaron _________.

Me: What city and state do you live in?

A: [City, State].

Me: Do you remember what street you live on?

A: Mama? I don't want to be from [City, State].

Me: You don't? Then where are you from?

A: I be from Mars. Aaron ______ lives on [Our street, our city], MARS!

(I blame this on D. They are currently space shuttle and mars rover crazy. And they may not jump around like the other kids, but we spent 25 minutes in the apple store waiting for my dad at the genius bar and my kids were little pros on all the computers at the little kid table. Hey? Which skill will get them further in life, Grampa F.?)

I've Got Me Two Three Year-Olds.....So Take THAT, Bitches!

First of all, thanks for all of your comments on the TMI post. I'm thinking about pursuing the Mirena option, although it squicks me out a bit. But I've done some research and as they say, "It's not my mother's IUD." I'll let you know how it goes.

And yeah! The kids are three! Holy Crap how did that happen. We had a nice day at a local pizza place with an indoor hamster cage playroom. D's dad came with us and we had an unplanned meeting with a friend of ours and her little boy, so that was fun. The kids made birthday cake with me and we had cake with D's dad. We gave them each one small present (little airplanes) and a present to share (a doctors kit.) And that was it. (Party in the summer.) Pictures are on D's camera, so I'll put them up when I get them.

Three years old is a big milestone for me because I feel like I can breathe a sigh of relief about my paranoia that they would be removed from my care. I know this is quite arbitrary. It is based entirely on a comment that was made while I was in the hospital with them. But this comment ran over and over in my head and I would imagine myself as a mother of three year-olds. Where we would be and how we would get there. It seemed so very far away back then, like centuries away. But it came so quickly! And its here and we did it and no one can say we didn't or couldn't. So, okay, here is the letter I've been thinking about writing for three years. But couldn't write it until the kids were three, as you soon will see why. I might have to do some edits and shorten it up of course, but I'm pretty sure I'm going to send it. So here is the letter to the maternity ward director where the kids were born. And crap, I can't figure out the formatting. Sorry, folks. It seems to happen every time I Xed something out

December 8, 2007

Dear XXXXX,

I was a patient on the maternity floor of

XXXXX

Hospital

three years ago from December 7-12, 2004. I gave birth via C/S on the 7th to 35 weeker twin boys named Naim and Aaron. Perinatologist Dr. XXXX was my attending physician and the children were seen by pediatricians from The XXXX Clinic. Dr. XXXX is their current pediatrician. I am vision and hearing impaired, and the babies’ father, D XXXX, is a C6 quadriplegic. We stayed in

Suite

30

, if I remember correctly.

I am writing this letter because of several comments that were made by your staff concerning our ability to parent our children. Most notably, a comment overheard by a friend of mine as she waited in the hallway near the nurses station in which a staff member said that even if my partner and I managed to care for our babies the first month, they would definitely be taken from us by the time they were three.

This was not the only comment made in regards to our ability to successfully parent our children. A CNA (who referred to us as ‘welfare cases’) told a pediatrician right in front of us that the ‘word on the floor’ was that if left alone to us, our children would not be fed and cared for. We also were told by a lactation consultant that I did not have what it takes to breastfeed and should probably give up my pumping and feeding schedule. There were other slights and judgments made in regards to our ability to parent as disabled people.

This was extremely distressing for us during a time when we were in need of support. I had just had a retinal detachment and lost most of my remaining vision 3 weeks prior to the birth and had had a difficult eye surgery and bed rest leading up to the birth. My children, particularly Naim (Twin #1), were going through the usual problems that many premature babies go through, such as jaundice, low glucose levels, and a lack of a good sucking and rooting reflex. I was also recovering from a C/S and could not find a level of pain medication that didn’t make me extremely drowsy. I was not at my best, and I took the advice of our childbirth class instructor, who told me to use the hospital stay as much as possible to rest and recover. She suggested that I put the babies in the nursery at night and to not be shy about asking for the nursing staff to assist with their care while I was there. This is advice that sounded reasonable to me, yet apparently backfired.

I feel that the preconceived notions regarding the abilities of people with disabilities caused us to be unfairly judged and thus perhaps led staff to make decisions that were not in our children’s best interest. For example, other premature infants without a developed rooting and sucking reflex are often treated with an NG tube until their ability to eat on their own develops more fully. Perhaps this was a judgment call that could have gone either way. But in the four to six weeks following his birth, Naim was seen several times by a WIC dietician and nurse, a XXXX

County

outreach nurse, and the feeding clinic at XXXX. None of them could get him to eat any better than we could. We tried different nipples such as the Haberman, we tried different techniques and positions and schedules. Nothing worked. We ended up just dripping drops into his mouth, birdlike, for the first month. Finally, near his original due date, he just suddenly developed a sucking reflex. My point is that in any other situation, a baby like Naim would have been treated as he was; a premature infant with eating difficulties. Instead, some of your staff blamed his problems on us, on our inability to feed him due to our disabilities. I think that these types of judgments can potentially be harmful to patient care.

The other way these judgments and prejudices were harmful to me was the stress and fear they induced when I had to hear such comments. I did not know how far this would spiral out of control. Every time the door opened, I wondered if some social worker was going to come and take my children away. I was not able to rest and recuperate in the hospital; I was put on the defensive. One reason I did not accept hardly any pain medication was because I did not want to be mentally compromised if I had to fight for my right to keep my children. I cannot even describe to you the insult added to injury that the words of your staff caused my partner and I. We literally became fearful of some of the staff and watched our every move, making sure that we did not ask for or accept much help. We knew our every move was being scrutinized. This was not conducive to a recuperative stay for any of us.

I would like to take a few minutes now to tell us a bit about our family, and perhaps dispel any misconceptions you may have about us. I have a master’s degree in education and have taught school as well as worked at XXXXXX and XXXXX Children’s Hospital as a research associate and a child life therapy assistant. My partner Dwight and I met in college. His education is in computer engineering and he worked as a software developer at Hewlett Packard and now sells software for XXXX. We have been together for 13 years now. We are not married due to health insurance issues. He relies heavily on TriCare, military insurance he gets through his father’s service in the Marine Corps. If we married, he would lose this much needed secondary insurance. At the time of my pregnancy, I had recently changed jobs and was not able to have my pregnancy covered by my COBRA BCBS insurance due to the preexisting condition clause. I also receive Medicare through a disabled work program. I currently work as a CNA and as a writer for a disability education organization. Because of the job change, my pregnancy and our children’s first year of medical care was covered by Medicaid, which I paid a premium for. I imagine that this is why we were thought to be “welfare cases.” The children and I are now covered by a BCBS plan. We have a modest income, but we do work and we do meet the financial needs of our family. Regardless of this, I would hope that anyone who finds themselves utilizing Medicaid or other financial assistance could count on being treated in the hospital without judgment or rude comments.

As with any new parents of twins who had some eating and health issues, the first 3 months or so were tough, but slowly the kids got over their health issues and gained weight and began to thrive. We have occasional help from family, friends, and babysitters like everyone else, but we largely take care of our children entirely on our own. I developed a method for using a white cane while pulling the kids behind me in their double stroller. I learned to gauge diaper rash I couldn’t see by how they reacted when I cleaned their bottoms. I hooked up my hearing aid FM system to a baby monitor that would signal me when they would cry. DXXX developed ways to hold them and feed them by propping them on pillows. He could pick them up from the floor by using a transfer belt or just sticking his arm in the back of their overalls. We both developed ways to keep track of them at the playground using bells and lighted shoes and by starting small and setting clear boundaries while slowly expanding their world. Instead of sitting on the park bench watching them, I got to have the fun of following them up and down the playground slides as my way to keep track of them. There really has yet to be any parenting challenge that we haven’t effectively met.

They just turned three yesterday. And we still have them and have never been even close to having anyone threaten to remove them from our care. We have purposefully taken advantage of such programs as Healthy Start and the Washington County Public Health outreach program in order to have ‘witnesses’ that would vouch for us if there was ever a problem. These professionals have been in our home on a monthly basis for three years, and their time is coming to a close. We have always received complements on our parenting skills and how well the children are doing.

And they are doing wonderfully. They are healthy and well within normal range on the growth charts. They have met or exceeded all of their developmental milestones. They have learned both sign language and English and have that wonderfully hilarious vocabulary that three year-olds are known for. They enjoy trips to the park, the Children’s Museum, the Zoo, Church activities, and outings with other children. They enjoy traveling with me on the MAX and buses and are learning the rules for crossing the street (which in our case means they are learning traffic rules and patterns and the sounds of the intersection as well as red/green lights.) They will be starting preschool in the fall. They have no problem relating to our disabilities because it doesn’t seem like anything is different to them and I think this helps them to relate to others with differences. They are a joy to be around and they are the best decision I have ever made. They are the light of our lives.

I hope that by sharing our story with you, that you may look at the attitudes and prejudices that may be impeding on your staff’s ability to give the best quality of care to all of your patients regardless of their life circumstances. I want nothing more than to make you think twice the next time you have a disabled mom or dad in your care or anyone who may be struggling with a unique situation. And I want whoever said our children would be taken from us before they were three to know that they most certainly were NOT. There was never any reason to think that they would be.

I would also like to say that we do know that not every staff member felt the way that these ignorant people did. We did have wonderful nurses that seemed to go to bat for us. It almost seemed like there was a bit of a divide among your staff. We sensed a lot of ‘office politics’ going on that week that we might have been in the middle of. I wish I could remember all the names of everyone who was so kind to us. We were given the biggest suite and DXXX was accommodated with his own egg-crated hospital bed, which helped ease his stay with me. We had a wonderful nurse that helped me check out on the last day and gave me a hug and lots of encouragement. We had a nurse that was with us for the day shift for about three days and a night nurse that was very helpful. Now that I think about it, it seemed like the nurses that spent the most time with us were generally supportive, while those who only saw us briefly had the biggest misconceptions about us and caused the most stress. I think that proves that when people take the time to know us as who we are, not who they think disabled people are like; they don’t have any problem with us. Again, my point in all this is to encourage your staff to look at their prejudices and to share with you how much fear and stress it caused us to be judged in such a misguided way. No new mother (who has done nothing wrong and shown no sign of being unfit) should have to recover from a Cesarean and get to know and care for her preemie twins while being terrified that they will get taken away. That was nothing less than a nightmare.

Thank you for taking the time to consider my situation. I hope it helps you better serve future patients.

Sincerely,

Lisa XXXXX

Stay Out of My Uterus.

Over the course of this blog, I've been asked from time to time about my feelings about abortion, Infertility treatments, knowingly going through with the pregnancy of a disabled child, etc. All heady stuff. I'm going to try to cover this without actually writing a seven chapter treatise, if that is possible. (ETA: Ha! Not possible!!) Because it all boils down to the same issue for me.

First of all, let me just say that I don't like the whole idea of abortion. This comes entirely from an emotional place, not an intellectual one, nor even a moral one. It is because I look at it from the perspective of infertility and adoption. I spent months, literally rolling the dice to see what a one in six chance of becoming pregnant each cycle actually looked like, scouring the internet for PCOS and IUI success stories, disability adoption stories, quadriplegia success stories, etc. I spent years wondering if I could ever become a parent or if it was just a pipe dream. At times it got so hard that even looking at the baby section of a store was painful. I spent hours in a waiting room at my RE's office with a bunch of other miserable, yearning people. We were surrounded by 3-ring binders of past patients successes. Photo albums and walls covered with pictures of IUI, IVF, and ICSI babies and their happy parents with that look of relief so evident in their eye as they held their infant. It was encouraging, but we in the waiting room were still miserable and yearning, wondering if we had enough ultrasound wands stuck up our hoo-has, enough time in the stirrups, enough weird speculum related x-rays, and D and C surgeries and injections and hormone altering pills, if we went through enough crap--would that ever be us up there on the walls with our baby? And although I didn't adopt, I have been around the IF community to see people who are trying to adopt and how they agonize over home studies, profile letters, dossiers to foreign bureaucracies, waiting to be chosen and then unchosen, spending tens of thousands of dollars on administrative and legal costs in hopes of becoming parents.

So, yes, it is emotionally hard for me to hear about women who can get pregnant so easily decide to abort. I'm not a big fan of it. But I understand that not really anyone is, even those who have chosen that route.

But politically, intellectually, logically, and yes, even spiritually I believe that abortion should be legal. I wondered, if and when I finally got pregnant, if my views would change. They did, in that they only got stronger. I became even more pro-choice. I've talked about this before, so I won't go on about it, but twice in my life I have thought of having an abortion and been grateful for the choice, even though I have never had one. The first time was when I was 20 and dumb. I got very accidentally pregnant, in that we did use birth control, but not really the best kind. Here is the thing about birth control, Nothing, absolutely no form of birth control is 100% foolproof. Most purport anywhere from 89-99%. When there are millions and millions of women using birth control, 1% is a huge number of accidental pregnancies. Hundreds of thousands, potentially. At 20, I was a college student, a sophomore by credits, living on $368 a month. I was unmarried and the father was in a more precarious situation than I was, and we were close to ending our relationship. In fact, I guess you could call the sex that resulted in the pregnancy "last call" sex, if you will. I never really got very far in the decision making process because I miscarried at 12 weeks. But during those weeks, even though the thought of abortion horrified me, it gave me another option, and the option of opting out sometimes is what you need to clarify how much you want to opt in. After the miscarriage, I wanted to double up on birth control and attempted to get on the pill. I had no insurance, no gynecologist, and wasn't even taking enough credits to qualify for student health services. It was Planned Parenthood who came through for me, providing me free medical services and reduced cost birth control pills. I also learned a lot of basics in family planning that I should have known but didn't from them. It was my only option and I was grateful for it.

The second time I thought about abortion was when I was pregnant with the twins. I didn't seriously think about going through with it, I had worked so hard for these guys I wasn't planning on quiting now. But due to the fact that my already complicated pregnancy was now made super complicated by the fact of the twins, I had to face the possibility that my life could be threatened and I might be in a position to choose between my life and the babies. Horrible choices, but having the abortion option available made them easier to face. If it got so bad that my kidneys were failing, I did have the option of bailing out to save my health. At 32 weeks, too late for an abortion, I had a different dilemma, I had to weigh my babies health against my remaining eyesight. Each day, each step was a balancing act. This was not life and death, but it was scary. I could give birth at 32 weeks and my kids would end up in the NICU but I could go on to get the best surgeries and medications and outcomes for my vision. Or I wait till after the babies are full-term, and risk never seeing them. I ended up doing a compromise of sorts. A non-anesthetized simpler surgery than the best surgery, No medication until after their births, and then a follow up medication and surgery. I want to clarify something here. I was having contractions off and on throughout my third trimester, but not 'real' ones. I said somewhere that I was having contractions on the way to the hospital. I was, but I was not in labor. A decision was made between myself, my perinatologist, and my ophthalmologist to have a planned C-section at 35 weeks. It was a compromise decision. My blood pressure was rising, my non-medicated glaucoma was worsening, and the babies lungs were developed enough, so we decided it was time. How this all relates to abortion is this: I got to choose at what level to risk my own health and vision and my babies health and survival. It was not easy, but no one made the decision for me. I can't imagine someone saying to me at 32 weeks (or at 16 weeks, well within the abortion window), you have to abort to save your health! Or, you have to go into kidney failure and go completely blind to save your unborn fetuses! No one was in my situation, no one knew how balancing the babies needs and my own felt. No one had the right to make those decisions but me.

The other issue I thought of when I was pregnant and got such a backlash from D's family and a few strangers on the street was the whole eugenics thing. Disabled people historically were subjected to mass sterilization and sometime forced abortions. Also, those who gave birth often had their babies taken from them the second they were born. And by historically, I mean within the last century, the very recent past. Deaf and blind folks, as well as those with cognitive or emotional disorders and even physical disorders like CP were not allowed to make their own reproductive decisions. The fact that not so long ago, someone could FORCE me to have an abortion makes me even more committed to abortion rights. The flip-side of what happened to disabled women was happening to nondisabled women in the beginning of the last century and beyond. They were being forced to HAVE children. Information about available birth control methods like the rhythm method and how their cycles worked was being withheld. They also had no rights as far as consensual sex in marriage. They could not use abstinence  to avoid pregnancies either. Women were stuck in abusive marriages and forced to bear and raise children that cemented them in poverty and locked out of educational and work opportunities. This all goes back to the same issue. Women need control of their own bodies and their own reproduction. These rights need to be self-evident.

Does the fetus have rights? Is it a life? A human? Does it have a soul? If so, when? At conception? At 40 days? At birth? I don't know the answer to these questions. So, I assume that it is a human at conception and it does have rights. But here is my thinking on that: You have two humans involved here. An unborn child and a woman. If the woman wants to abort for whatever reason, you have two humans whose rights are in conflict. And you have to choose whose rights are paramount. The fetus needs the host, a woman, to survive. The woman's body is being compromised by the fetus. Even in the most healthy pregnancies, the fetus compromised the woman's body. Any ob/gyn will tell you that a fetus is a parasite, biologically speaking. My peri told me that when I worried that I couldn't eat enough due to eight months of morning (all day) sickness. "Ah, don't worry," he said casually, "They're parasites, they take what they need. You'll feel like crap and be malnourished but they'll be fine." I know it is a cruel way to look at pregnancy, but biologically, its true. Most of the time, women are willing and able hosts and put up with the sacrifices with no problem. But in no other situation do we require that a person compromise their bodily integrity for the health or life of another. No one is required to give up their life, an organ, or even blood for another person. Many do voluntarily, and that's great. But no one is required to. Even if a person is responsible for the other person's precarious demise are they required to provide biological and "hosting" services and products for another human being. A drunk driver who injures an innocent passenger who needs a blood transfusion or a liver transplant or whatever is not required to provide this. This is about the inalienable rights we have to control what happens to our own bodies. As crude as it may seem, a woman is hosting another human. She may even have gotten in this situation by her own stupidity or bad judgment, just like our drunk driver. Still, she needs to have the right to choose to do this voluntarily or not. They are both human, and they both have rights. This is why I don't totally object to mandatory rehabilitation for pregnant addicts. I think there is a potential chance for a balance between rights and some positives to happen there. But to carry the baby at all? I think the woman's rights trump the child in that instance. It is an unfortunate situation when a woman feels like she can't go on with a pregnancy. And my hope would be that she have all kinds of options available to her so she could make the best decision for herself and her pregnancy. Abortion, as much as I don't like it personally, needs to remain one of those options.

One of the reasons I don't like abortions is this whole issue of pre-screening and abortion of disabled fetuses. I am saddened that so many people (about 90%) choose to abort fetuses Down Syndrome, Spina Bifida, Cystic Fibrosis, etc. It saddens me because this is such a social construct. But our society is not set up to help the poor woman who has no reference to disability and has just learned her kid has Down Syndrome. Nor is it set up to accept and assist her and her child after it is born. What happens is, when women do the triple screen (or quad screen or whatever) at about 18 weeks, and they are told that their unborn child has a disability, they just have a matter of days to a)go through the grieving process of losing the ideal of a "normal" child; b)process all the information they can about their child's disability; c) process what this will mean for their own lifestyle, financial situation, the way they will be perceived by their peers; d) process their own prejudices and misconceptions about disabled people and learn how to become an advocate (they need to become an instant advocate because their doctor for sure along with everyone else will expect them to abort); and e) figure out that there is a whole community of support out there and most importantly, many happy parents and happy children that are disabled. You will laugh at this reference to show what I'm saying, but their was a season on the TV show, Dallas, many years ago where Donna and Ray found out that her unborn baby had Downs. Then they went through weeks and weeks of agonizing decision making. They went out and got to know adults with Downs and parents of children with Downs. They met with doctors and self advocates. They started volunteering at a sports team for kids with Downs, they became close to a child with Downs and invited him into their home and practiced taking care of his needs. By the end of the season, they had chosen to go ahead with the pregnancy. They figured out that parenting a Down's kid would be a real challenge, but not a tragedy for them or the kid and though not what they expected, it was what they wanted.

And wouldn't you know it? That was the season that was all Pam's dream. So after they decided all that, Pam woke up and it all never happened. (I always wondered why she dreamt about them so much, didn't you?) But in reality, 18 weeker pg women do not have weeks and months to explore these issues and make these decisions, they have a matter of days. And with the oppression and prejudice in our society about people with disabilities, you can't expect them to really come to a different understanding about life long thought patterns that are ingrained in their psyche. Outlawing abortion is not the answer here, changing what it means to be disabled in this world is. Making it respectable. And that is not something a mom can do in 3 days. It isn't even something 54 million disabled people can do in 50 years. I really feel that it is unfortunate when mothers abort disabled babies. I think they are missing out, as are the children, of course. But I am realistic enough to know that pointing a finger at a particular mother in this situation will do no good. This is the hidden problem with oppression and discrimination. Everyone turns out to be a victim of it, even if you are not the target minority. The able bodied mother is oppressed herself by society's discrimination and lack of respect and value for disabled people. I've often wondered what will happen if they find a "gay gene." The Gay rights movement is leaps and bounds ahead of the disability rights movement. Will society be ready to accept a gay baby pregnancy? Or will there also be a 90% abortion rate? And we can carry that to eugenics of eye color, sex, hair color etc. If we can determine all this pre-birth what will happen as far as abortions? Again, here the answer doesn't seem to be to disallow all abortions. The answer is about changing what society values. Going deeper and seeing the worth of all people instead of giving in to shallow and misinformed prejudices or even vanity. Group think is incredibly persuasive when it comes to these types of decisions. Right now, it is the common logic think to do to abort a downs baby because downs adults are not valued and respected. What if they were? It would change those scary days after amniocentesis dramatically.

Also, Down's and Spina Bifida are just the tip of the iceberg as far as amniocentesis decision making goes. Many times, parents are told that their child has a terminal condition. I once knew two women who were pregnant at about the same time and both were told their kid has trisomy 18. Trisomy 18 is usually fatal within a few minutes to a few months after birth. One woman decided to abort. Her reasoning was that her baby was all nice and comfortable and warm in her womb. It was the only home he had ever known. The child would be aborted via anesthesia overdose, and thus would simply fall asleep in her uterus and die inside of her. This, to her, seemed more natural and comforting than to give birth to a child who might have nothing but pain in a cold, sterile incubator. To her, it was the only thing she could do for this child as his mother, that he die within her. The other woman decided to give birth. She decided that for whatever short time her baby had, she was going to make it the best possible. That her baby deserved every second of its short life that she could give her. She had her baby and she lived for about six weeks. During that six weeks, that baby was constantly held, loved, nursed, sung to, comforted, played with, all by a round the clock vigil of family members and friends. She died at night with relative ease in bed between her mother and father. This was how she chose to best mother her child. Who took the right path? They both did. Who am I, or anyone else, to say differently? It is about your personal relationship with your child as a mother. No one can make these decisions for you.

Moving on, I'm not going to say a whole lot about ART (Assisted reproduction) except to say, again, these are very individual decisions having to do with your own body and your own decisions on how to balance risks. It is the same issue as abortion. One thing I absolutely CAN'T STAND is when people make comments like, "Well, if you are infertile, maybe God is trying to tell you not to have children! You shouldn't mess with GOD!" So by that line of thinking, if you get cancer, you shouldn't get medical treatment to fight it because God must be trying to tell you not to live. Don't mess with God now! If you seriously break your legs and you will never walk again unless you have a very complicated high tech surgery, God must be telling you that you belong in a wheelchair, right? Infertility is just a medical issue like anything else. You have rights as far as what medical treatment you want to pursue or refuse. Infertility treatments are no different. Medical technology is advancing in this area like in every other medical field. It gives us more options. How you go about dealing with IF is such a personal thing that I can't imagine judging someone for it. Yes, sometimes I see people on their 20th IVF and wonder why they don't give it up and adopt? But never have I known all the reasons or been in all the situations that bring people to ART. Yes, people who go nutty doing pre-implantation genetic testing to get a perfect baby are a bit disillusioned that this will guarantee them a perfect Mensa child. But here again, it is society's attitudes that need to change, not so much the available technology.

One last thing along these lines. This:

If you don't recognize them already, let me introduce you to the Duggar Family. Jim Bob and Michelle Duggar and their SIXTEEN children (with number 17 on the way.) These are all biological children, folks. This family is evangelical Christian and they have decided to let God decide how many children they have. They homeschool, they have no debt, and live very frugally, yet surely buy out the Costco every other day. They have Christian hair. You get the idea.

I do not agree with the choices the Duggars have made. Mostly on the grounds of overpopulation and our responsibility to not go crazy making the problem worse. And personally, if I spent the past 20 years of my life pregnant and breastfeeding without a break, I'd want to hurl myself off the nearest skyscraper. However, I agree to the principle that they have the right to make these decisions. Recently, on a pro-choice, feminist website, the Duggars came up and everything from the condition of her vagina to the assumption that the girls are being abused came up. I don't think there is any evidence to support a problem with either the mom's vagina or the girls safety that I am aware of. I mention them because it goes both (all) ways, folks. If women have the right to decide whether to take a fetus out of their uterus, they also have the right to decide how many to support in their uterus. If they can't have 17 children, then can they have 10? How about 8? Is 4 OK? Or should we be really logical and say only 2, to replace ourselves? Or we could take China's approach and only allow one baby per mother... and have thousands of impoverished or otherwise oppressed mothers have to abandon their (mostly) girls because boys are valued more. Thousands of children who were probably wanted and loved end up institutionalized until they are able to find adoptive homes. Often leaving them with emotional and developmental delays. Again, I see nothing wrong with societies educating people on birth control, and overpopulation, and encouraging smaller families. But, still, I think if we defend the right to control our uterus then we have to go all the way. Families like the Duggars are very rare, which is why they get so much attention. And their hair still annoys the hell out of me. But I will not be making fun of anyone's vagina or advocating that women shouldn't be allowed to have that many children while also advocating that woman should have control of their bodies should they decide to abort. Reproductive rights are reproductive rights.

All of these issues boil down to one thing. Control over what happens to our bodies is an inalienable right and should be fought for.

Multiple Realities

I've wanted to write some posts about the experience of having twins and then I don't get around to it. Besides, everything I've ever wanted to say about it has been so eloquently said by Emmie. She speaks of twin parenting so truthfully and beautifully, both about the joys and struggles of twins. Really, if I had a section about parenting twins, it would just be filled with links to her blog.

Emmie writes about the whole controversy of multiple pregnancies and IVF. How many embryos should be transferred, etc. Go read what she has to say because she has actually been there. In real life, I get a lot of one or two comments. First, I get comments assuming that I went through IVF and that I brought twins on myself. Second, I get comments like, "Oh, you are so lucky to have twins! I've always wanted twins!" I know these people don't mean any harm and are just making conversation, but a part of me just wants to set them straight and tell them that they are batshit insane.

So, first, let me set one thing straight. I did not ever do IVF (in-vitro fertilization.) I did not ever pay thousands and thousands of dollars in fertility treatments. I am not saying that there is anything at all wrong with anyone who has made that choice nor that if they had twins or higher order multiples, that it was "their fault." I am perfectly okay with people choosing IVF. If I were in a different situation, I may have chosen that myself. Furthermore, if an RE would have told me, you'll have a better chance of conceiving if we implant two embryos. There are very little side effects from having twins, I probably would have happily drank that koolaid. Infertility is a crazy beast that messes with your mind, I tell ya. And I just had a relatively minor taste of it. For the record, I did three cycles of Donor Intrauterine Insemination. The first cycle I was not charged for because my RE screwed up some lab work and was completely off on my ovulation. (Ovulation test strips never worked for me because of my kidney dysfunction.) Then I waited two years through D and my mother's illness. During that time, I just happened to develop a really, er, bloody uterine cyst problem that would have needed treatment whether I was trying to conceive or not. All of that was paid for by insurance. Then, I tried two more cycles of DIUI. In the first cycle, I took the lowest dose of clomid for 5 days in an effort to predict ovulation. This was a failed cycle. In the second cycle, I did not take clomid. This time, they decided to give me an HCG trigger injection to make me ovulate at a specific time. I had a vaginal ultrasound 36 hours after the trigger and 20 minutes prior to the IUI to ensure ovulation and to make sure there was only ONE EGG!!!  I was told that there was in fact only one egg. This cycle was successful and two little boys were born 7 and a half months later. Go figure. The whole fertility part of this, for the record cost me $1100.

So, since Clomid and HCG can increase the rate of twins, I can relate a bit to what Emmie is saying. I don't think my RE was quite as upfront with me about the chances that I would have multiples, nor the risk of multiples themselves. Also, when I was told that I was having twins during a five week U/S given by my RE, it was only then that I was told very casually, that sometimes ovulation ultrasounds can miss an extra egg and that having an ovulation U/S is not really that good of indicator of whether you are at risk of multiples. Huh. Well, that's not really what I was told during the ultrasound where they were so CERTAIN that they only saw one egg. I'm not blaming my RE entirely for this, for I don't know if I would have made a different choice if they saw one egg but stressed to me that they could be mistaken. Or had told me that the Clomid I took six weeks before could still have an impact. I was in the stirrups, the sperm was processed and sitting right in front of me. You want a baby, they only see one egg. It all looks good. You go for it. But I do think that RE's are sometimes a slave to their "success rates" which are published everywhere and which they brag about. I'll never forget making my first appointment with the RE. ("I'm really doing this???!!!") The receptionist said, "Don't worry. They'll get you pregnant." My heart skipped a beat.

In a way, I think mine is a harder situation than IVF when it comes to the risk of multiples. With IVF, you actually can choose exactly how many embryos to transfer instead of it being somewhat up to the chance that your body is doing some crazy ovulating thing. (Also for the record, it should be known that Clomid or HCG is not the same thing as Gonal F, the multiple follicle stimulating injections women get to make them hyper-ovulate and have, like 16 eggs pop out. HCG is not used to hyperovulate. It is used to trigger the mature follicle to be released from the ovary. In my case, this was done to pinpoint the exact time that ovulation would occur, because all my lab work gave no indication of a correct LH, due to my high levels of albumin and protein screwing everything up.) Anyway, not that it matters. You have these choices in front of you and you try to make the best one. I don't blame anyone for their choices, but I agree with Emmie. I do think that the rational, objective expert RE's should be a little more forthcoming with the true risks. Sometimes, looking back, it does seem like they play with your emotions a bit.

I love my boys and I cannot say that I regret having them. I cannot imagine my life without Aaron nor without Naim. But I think people who "wish" for twins are a little misguided. Having twins is not ideal in many ways and I would not wish a multiple pregnancy on anyone.

Twins caused my somewhat risky pregnancy to be an extremely risky pregnancy. I was already in the high risk category because of my kidneys. Being pregnant with twins really took much of the joy out of being pregnant. Every day was a stressful risk and tightrope walk. You have twice the placental hormones running through you. You are life support for two instead of one. The stress on your body doubles. My first trimester was pretty typical with morning sickness. I think I missed the "golden second trimester," because by four months I was looking about 7 months pregnant. I was walking around like most women walk around in the third trimester. I was short of breath. My back, boobs, and pelvic bones were killing me. I got head rush constantly. I had to sit down every few minutes. By my third trimester, I developed serious life threatening complications. I had preeclampsia, I developed Bell's Palsy and a facial hemorrhage, I had a retinal detachment and developed glaucoma in my eye. Pregnancy was not a lovely exciting time, it was a prayer to get all three of us through each day alive. It takes so much out of you that you are completely physically compromised when it comes time to actually care for your twins.

I'll interject here another unfortunate side effect of having a twin pregnancy. I understand the strong desire that some women have to have a second child and do it all again with the knowledge and experience you gained from the first child. Because I had such serious problems with my twin pregnancy, and the same twin risk factors would still be there if I tried again. and because I already have two children, I have decided that I will never get pregnant again. And that is really sad sometimes. I would have much rather had two separate and less stressful pregnancies. Once was just not enough. And now every first that I experience with my children is also my last. It can be heartbreaking.

When I developed these serious complications, I had to make the decision to give birth early. Here is another area where I did not feel like I was given full access to the information and risks. I waited it out to 35 weeks because I was told that thirty-six weeks isn't even considered a preemie anymore. I was told that my kids were fully developed and would just be a little smaller that if they came to term. I was also told that they didn't have any room to grow anyway and they wouldn't likely get any bigger. With this information, I held out till 35 weeks and then couldn't take it anymore. I was starting to have small contractions anyway and my cervix was thinning. But since both my babies were breach (one transverse and one full breach), I had a scheduled C-section. At the time, I could not see hardly anything as I had eye surgery a few weeks before. I would not see my babies be born and I didn't know if I would ever see them.

When they were born, suddenly my "for all practical purposes full-term babies" had a myriad of preemie problems. They did very well compared to what could have happened to them, but the neonatal nurses were surprised that no one had told me that they would have no ability to suck and eat. Or that they would have extreme problems with overstimulation that might never go away. Or that they would have a horrible time getting over their severe jaundice. Or that they would not be able to stay awake more than a few seconds at a time because they were so busy trying to learn how to breathe. Or that they would not be able to maintain proper temperature. Or that they would develop life threateningly low blood sugars and have a hard time maintaining good glucose levels. I'm very lucky that my kids got over the majority of this stuff within about two months. But it is still uncertain the full effects of the pregnancy or early birth. They started out way below the 5th%tile on the growth charts and have slowly moved up. But they are still at only 25th%tile and I wonder if they will be small all their lives. No one told me this. They told me that they would catch up by the age of two. Naim in particular still has problems with overstimulation and sensory integration. I wonder if he will have trouble in school. Don't get me wrong, they are doing great, but it would have been nice to have had this information before hand. Maybe I could have held on for another week or two? Maybe it would have helped?

I know this is all old news and blah blah blah for my regular readers, but I just want to stress how twin pregnancies are NOT routine. Many people do fine, but many, many people have serious complications. Relatively speaking, we were extremely lucky.

You end up sort of having to mourn the pregnancy and early parenthood you thought you were going to have. A vaginal birth, breastfeeding, and glowing pregnancy were all out of the picture because I was having twins.

And then there is the parenting. That picture you thought of when you thought of yourself with a baby, one baby. It was you in a rocking chair with your lovely sleeping or breastfeeding baby. You were both at peace, blissful with all the time in the world. With twins, that picture is near impossible to have (especially if you are a single mom or alone with your kids all day.) There is no quiet time with your baby because the other one always needs something. Is always waiting in the wings. You can be having a special moment with one and the other one will cut in and ruin it with whining or getting into something or falling down and crying or just wanting your attention, too. I'm sure people who have more than one child feel like this as well, but at least they had some of that time with the first one. And at least different aged children have different needs and levels of support that they expect from you.

One thing that people also say that is just stupid is that with twins you only have to pay for two pregnancies for the price of one. "A two for one special!" they say. Again, I know that they are being nice, but that just is a stupid thing to say. Twin pregnancies by far outprice a typical singleton. I had upwards of ten ultrasounds. Most singleton pregnancies get one or two. I had probably three times as many visits to the perinatologist than an average OB. I was in the hospital for six days, whereas a singleton pregnancy is usually about 24 to 48 hours. My kids required an extensive amount of care both in the hospital and once at home. (And they didn't even have NICU time). In addition, I think if I had had only one healthy full-term infant, a vaginal birth, and none of my own health complications, I would have been able to cut down my use of the nanny significantly. I think maybe just two or three days a week for the first month or so. I may have been able to get by on a lower priced teenage mother's helper or something as well.

And besides, the two for one special ends after you give birth. After that, it is double everything. Double stroller, double diapers, almost double the amount of clothes, double bottles, double formula, everything. There are no hand-me-downs because they need everything at the same time. And double daycare! MY GAWD!! I had a very rude awakening about going back to work after I had twins. I looked at the Internet and budgeted in costs for daycare that were no where near reality for my area. They also talked about these sibling discounts you are supposed to get. One site I looked at was a budget to help welfare moms go back to work and get out of poverty. They had $80 a month budgeted for daycare. On what planet, I don't know. Maybe they were using 1860 dollars. (I already think they use 1860 dollars to determine the poverty line anyway.) I was told about daycare vouchers and head start. None of those came to fruition. I made too much money to qualify. If I quit working my little $9/hr. job and got myself under the poverty level, I worried that I wouldn't be able to even feed my kids. I made about $36,000 on my last job. Day care for two infants (no sibling discount to be found or if so, 2-5% off), would have cost roughly the same as my net earnings for a month. The cost of daycare goes down after the kids are two or three depending on the county you are in. If I had just one kid, I could probably go back to work when the kid was 2. With twins, it will probably only be feasible when they are six or seven years old.

There are other ways that having twins has significantly impacted my life. As a person who uses public transportation, I would have been able to get back on the bus probably a few short months after a singleton was born. With twins, I waited until they could walk well, and it still is something we don't do very often because of the difficulty. I have no concept of grabbing just one diaper, doing just one load of laundry, giving just one bath, feeding just one child, leisurely tucking in just one kid to bed. My time is eaten up by twins. You supervise one and the other is into something else. They collaborate with each other to get into things they shouldn't. I don't just wander around with one kid at the park, I am constantly herding two kids. If they separate, I'm in trouble.

Which brings me to a bigger worry. It is hard to provide quality parenting to two infants/toddlers at the same time, especially when you are the only one doing it. I worry that I could not hold each one enough when they were younger. Attachment parenting is pretty difficult to impossible with two. I worry that they aren't getting enough direct stimulation from me. That I can't talk to both of them enough. That their language isn't developing fast enough. They stick together in day care and on the playground. I worry that they don't branch out and meet other kids because they have each other. I worry that they each don't get all the mom time that they need. They sometimes seem desperate for it.

My kids are in the normal ranges on all of the little developmental marker scales. But they are somewhat in the low end of normal. I don't heed too much attention to that kind of stuff. But sometimes I am like, I am working MY ASS OFF to provide developmental and language opportunities for these guys and they are at the low end of normal? I always thought my kid would be sailing through this stuff. I see that they are not doing as well as other kids who I know don't have parents who spend near the amount of floor time with their singleton as I do with my twins. It is not a contest and I'm not saying that I am significantly worried about them. I think they will be fine. But I do think that I've had to work my ASS OFF with them every day using every teachable moment I can find to get them to "normal" because they are twins and there is only one of me. I have a hunch that if I had just one kid, he'd either be really ahead or I'd have only worked half as hard with him. I think part of it is overcoming their preemieness. But with twins, you lose so many of those teachable moments because of distraction. One kid is on the cusp of learning something and the other kid comes just at that moment and screws it all up. I know this happens with different age siblings as well, but then you also have that peer model to help you out, too. With same age twins, they will teach each other the wrong ways to do things as fast as you try to teach and model the right ways to do things. I think that as they get older, this will be less of a factor. But since their birth, keeping them in step with their developmental milestones has been a constant uphill challenge for me. I'm just now starting to feel like the uphill is getting a bit less steep. Naim is FINALLY starting to say some discernible words. I've been doing the techniques I know from just taking two or three speech/language pathology classes in college and he is finally enunciating something other than complete NaimBabble. Naim's language skills are not so bad, but his speech has been incomprehensible. (The happy side effect of this is that basically we have been playing phoneme games to help Naim's speech, a precursor to phonics.  This has led Aaron to already doing prereading skills right now. He not only knows most of the alphabet, he can tell you that "B" says BUH and "H" says Huh, etc.) So, it is not that they are doing poorly by any means. They both have their strengths and weaknesses. I'm just saying that it is a hell of a lot of constant work every opportunity of the day.

I think that also the fatigue and dealing with two young children and their constant demands and needs all day can really threaten all of your good skills and intentions as a parent. I'm sure this is the case with anyone with more than one child, not just twins. But with twins as your firsts, you don't get to ease into it. It is thrust upon you. There are those days when I just leave my screaming kids in their room for a few minutes and go out in the hallway, turn off my hearing aids and say through gritted teeth, "Shut the fuck up you hideous whiny ungrateful brats." One day last week, I sat down after finally putting them down for naps and I was frustrated and exhausted. I Vent Googled. Ever done that? I put in, "I can't stand my toddlers!!!" Just looking for something to reassure me. I did find a couple of helpful things, actually.

I know this sounds like a bunch of whining. I don't mean it to be like I am complaining, because I am not. I'm just trying to shed some light on the reality of twindom. I love my kids, I love parenting them. My sister told my dad that I should give one of them up for adoption and I told my dad that for whatever reason, this is the challenge I was given and I have to rise up to it. And I feel like most of the time, I have done pretty well. But I don't think that it is a best case scenario thing to parent twins. I think that if at all possible, it should be avoided and not sought after or risked with fertility treatments. I would never say that parents should not be allowed to venture into fertility treatments that may produce twins. I think they have the right to take that risk and make their own decisions about that. But I would hope that they are well informed of all the risks both in the pregnancy and the challenges of parenting twins after birth. Yes they are fun and cute and all that. Yes, its nice that they have each other.  But I think that twins get sort of idealized too much in RE's offices, the media, and in people's minds. I write this so that people better understand the challenges as well.

Edited to add: Huh. I was never told this. Either by my nephrologist, RE or perinatologist. Women with High Protien Albumin in Urine are More Likely to Have Premature Babies. I mean, damn, I was lucky. We all were.

It Will Take You Nine Months to Read This Post

I had a conversation via chat today with someone who is 23 weeks pregnant with twins and is in the midst of the same scared shitless misery that I was in less than two years ago. It brought back a lot of the old feelings I had during my pg, and I thought I'd lay them down here. I want to get all this out, so forgive me--it will be long, as per my usual.

My pregnancy was a mixed bag of strength and euphoria as if I'd just won the lottery and an Olympic Gold medal on the same day and fear and vulnerability.

I already talked about how it was when I found out I was having twins here. There was a period of time where I almost wished for a vanishing twin syndrome type thing to happen. I had checked and double checked with all my medical people about my health risks and a pg. They all said I could go for it, but it would be a high risk pg anyway. When adding twins to the equation, the risks I was taking multiplied. I knew it could turn out very badly. I knew I could lose everything.

At some point, though, I started to yearn for both babies to make it and stay with me. At first, I think it was when my peri nurse made some comment about the triple screen and amniocentesis (which I elected not to have). There was a risk with amnio that I would lose one or both babies, and she said, "well, maybe losing one wouldn't be so bad for you guys." That comment pissed me off even though I had earlier thought the same thing myself.

Then, when I was about ten weeks pregnant, D and his father were at my house and D fell out of his wheelchair into my back alley and broke his leg. This was when I really had to start putting the kids ahead of D. I remember helping his dad lift him back into the wheelchair from the street and it was incredibly hard on my abdominals and I thought, I shouldn't be doing this. Then, the ER staff was just going to send him home with me with nothing but a pillow splint and no way for him to get in and out of his chair without me lifting him. I had an argument with the staff and flat out refused to take him home like that. I even cried, which I never do...hardly. He ended up staying in the hospital for about five days until we figured out a workable solution. I had a few more arguments with the social worker staff at the hospital, and we were able to get extra home-care hours for him. But it was during this time that I started rooting for both babies as well as myself. We became a threesome and it started to be all of us are in this together and we will get through this.

There is a weird vulnerability/macho paradox that I had when pregnant. On the one hand, I was walking around proclaiming, "Me Woman! Me Make Men!" I felt like such a powerhouse. Here I was, working, doing my thing, producing human beings at the same time. When I look upon my entire pg experience and that of all women, I can't believe that men are thought of as the stronger sex. They are all so wimpy when they get a little cold, there is no way they could handle what your body puts you through with pregnancy and childbirth. Your body tears you down and wears you down for nine months until you feel like you can't go on, and then you have to give birth and take care of a helpless infant (or two) 24 hours a day with no recovery period...ever.

On the other hand, since you are the life support for two human beings, you start being way protective of your body and you do feel like total crap week after week, at least I did. I felt vulnerable even going to the mailbox because I had these fears that a car might hit me or I would fall down on a curb or something and screw up something for the babies.

I worried about my stress levels as well. I was moving away from D while he was still in a leg cast. My guide dog was very ill the last few months of her life and I had to have her euthanized when I was about 4 months pregnant. My mother had died just months before and I was facing the reality of going through this major life experience without my mother. There was a family memorial service in Colorado to spread her ashes that summer (we couldn't do it right after she died because where she wanted it to be was covered in snow and roads were closed.) I chose not to go to the memorial, which was quite heartbreaking for me. I said that the doctors wouldn't let me fly, but I probably could have talked them into it. The truth was, my family is terrible about taking care of someone in a health situation and I was afraid that if something happened to me, I would not have access to medical care if I had to depend on my family for transportation, etc. It probably would have been fine, but I was feeling too vulnerable to take the risk. Then, there was the absolute selfish atrociousness that was D's mother's reaction to my pregnancy which was causing both D and I a lot of undue stress. With the death of my mother, it was unbelievable to me that I would be treated in such a way by anyone. Even a total stranger would have been more supportive. On the day before she died, my mother told D's family how much she appreciated them and asked them to look after me. Not that I really expected them to "look after me" in a care-taking role, but I also didn't expect them to treat me like dirt, either. I remember reading a Yahoo Health article about stress in the second trimester causing long-term mental health problems in infants while I was in the midst of all this and in the second trimester. I remember reading that to D and we were both just so pissed off at what his family was putting us through. Then we were like, you know, we are getting pissed off and stressed about being pissed off and stressed...so quit it!

Things were ticking along rather uncomfortably but well until my facial hemorrhage thing. I was at about 32 weeks and got up to get ready for church. I was in the shower (sitting on an exercise ball because I could no longer stand for a full shower) and everything in the right side of my face just started to bleed. My nose was gushing blood, my mouth and gums, my ear, and a pool of blood was forming in my eye. I remember looking down at the blood running down the exercise ball and then just seeing red, and realizing that I was no longer looking at the ball, I was looking at the blood in my eye.

Then, new decisions had to be made. The initial threat to my health was stabilized quickly, but I had a retinal detachment in my better eye. I had to weigh the risk of total blindness against the risk of losing my children, or more likely giving birth to them very early and all the consequences that that can lead to. It was not so much my life vs. the babies any more. It was much murkier than that. So we tried to make wise and cautious decisions. I tried to give all three of our needs equal weight. So, eye surgery but no anesthesia or medication (except a local). A very low dose of glaucoma medication for me (which was contraindicated for pregnancy) and bedrest for as long as possible to give the babies some extra time, but then get the babies out as soon as possible. We hoped that ending the pregnancy would take care of the pressure in my eye and face as well, and then I could go off medication and breastfeed, but that didn't turn out to work.

I went about three more weeks on bedrest at D's house. I couldn't see anything and could not believe I was going to give birth and not be able to see my babies. (By the birth, I was able to see a small bit out of the corners of my left eye. I had not used that eye since I was fourteen and had to retrain it to see in a way that would make sense to my brain.) I took one very small walk a day during this time. Outside in the rain, I would walk around D's building with my cane so I could get used to getting around with my new vision. D set me up with his laptop and voice output and I would listen to Democracy Now! and other news. I remember one of the first things I listened to was a post by Shannon on her old blog, "Waiting for Nat." It was about gay hate crimes and she had listed the names of hate crime victims. The list just went on and on. I was feeling so sick that I couldn't get up and end the page scroll. So I just sat there and listened to every single name. It was depressing, but it did put my life in perspective. At least no one was trying to kill me.

So I went on feeling like crap. I couldn't breathe. I couldn't sleep. I couldn't eat. I COULD go to the bathroom. Again and again and again. I went to 35 weeks and started having contractions. I had two breach babies, and with my health problems, labor was out of the question. So, just like that, my C-section was scheduled.

Having a Cesarean may save you from the labor itself, but it is a bit of a letdown. The part where they take your babies out happens within the first five minutes. One minute you have these unknown little fetuses living inside of you, and the next, they are screaming little human babies somewhere else in the room. D has some movies of the babies first hour or so, and the thing you notice most of all is that I am no where to be found. I got to see them for five seconds or so after they were born. Me, pinned down to an OR table with 2/3rds of my body paralyzed from the epidural. A little burrito of a baby is shoved by my head and then another one and then they are gone. D goes off with them and I am stuck on the OR for another 45 minutes while they put my uterus back together. In recovery, I am a vomiting, sedated mess and remember very little about the next several hours until that night. Other people are doing things to your kids and you just let them.

I remember WIC giving me these cards that say "NO NIPPLES! I'm breastfed!" I was supposed to give those to the nurse to put on the babies bassinets so they wouldn't be bottle fed. HA! My kids got glucose in a bottle within 5 minutes of their birth. Naim especially had very low blood sugar and he was on formula from the minute he was born before I was even out of surgery. I mean, I'm glad, of course. But it is just funny these idyllic images that Le Leche Leagers make it out to be. A lot of what went on the first few days seemed completely out of my control.

So, let me tell you about what happened in the hospital with us. The last few weeks of my pg, I had developed this REALLY itchy rash all over my body. It is a common pg thing, I guess. It drove me insane and they said it could take weeks to subside after giving birth. They asked me if I wanted something for it, and I said yes, thinking that they would give me some kind of topical cortisone or something. Instead, unbeknownst to me, they gave me some sort of IV medication in recovery. (I can't remember the name now.) Now, I am a person who gets drowsy on a Tylenol. Well, this itch medication made me have a really terrible reaction. I couldn't stay awake, I was vomiting, I was hallucinating. Seriously, I saw my mother and I thought she was actually there. I saw D's father when I was trying to breastfeed and screamed at D to get his father out of the room when he wasn't there. (Remember that I can't see, and I am telling these people that I see people across the room). D's SIL came to visit me, and I didn't talk to her for a few minutes because I thought she really wasn't there. I was spooked all the time. It took a couple of days for everyone to realize that they needed to STOP giving me this itch medication. But by then, half the staff thought I was crazy.

Meanwhile, my kids are jaundiced, losing weight, and not eating. I am breastfeeding one, then the other, then formula feeding one, then the other, then pumping. By the time that's done, I got maybe an hour to rest and then had to start all over again. My kids wouldn't eat. They couldn't stay awake long enough. And they had no suck reflex. We were taking the bottle nipple and squeezing little drops into their mouths like they were little birds, then hand closing their mouths and massaging their throats to get them to swallow. Naim, especially, had blood glucose problems and was getting his heal tapped for blood every three hours. Here is the thing: Every one since then that I've ever talked to whose had a preemie in this situation has told me that they put an NG tube in and had the kid in NICU. Not that I'd be thrilled about the idea that my kids have to suffer through an NG tube, but it would have taken the pressure down a notch. Naim got under 4 pounds from 5 lbs. 7 oz.

Also, almost everyone I've talked to has told me wonderful stories about how their lactation specialist helped them with special techniques or a special stool or a special position that helped with latching on or at least some encouragement. I got none of this. I got, "Are you really sure you want to breastfeed?" and "Don't you think it is time to give it up?"

And here is where things got interesting in the hospital. D and I created a war of sorts among the staff. Nurses split into different factions. Those that were for us, and those that weren't.

It started with Rosie. Rosie was a woman I talked to very briefly before I went into the hospital. She was in a group called M.O.M. Moms of Multiples and had invited me to become a member. She said she worked at the hospital and would lend me a twin nursing pillow (like a boppy only bigger for two babies). One morning in the hospital at about 6 am, someone tapped me on the shoulder. I couldn't see her, but I could tell she was in scrubs. She said she was Rosie and she was leaving the nursing pillow in the room. I thanked her and she left. About two days later (I was in the hospital for 6 days), in the midst of my bad drug reaction and the kids not eating, D and I had a showdown with a nurse who said we had to feed the kids every two hours. I knew that we were going to drop dead if we did that, and besides, another nurse told us that the kids needed to sleep as much as possible and feeding them more than every three hours would be futile because they would be overstimmed, to tired, and wouldn't eat anyway. So I told this nurse I wasn't going to wake them up every two hours. I told her I'd compromise to every 2.5 hours. She stormed out of the room and sent the NICU feeding specialist in to scare us into the kids ending up in the NICU. I had a very rational conversation at 4 in the morning with this nurse and she agreed with me about not feeding them every 2 hours. At about 6 am that morning, Rosie comes storming into my room. Now I did not know if Rosie was a doctor or a nurse or a janitor at this point. Rosie got all kinds of upset with us for not being able to feed the kids. She had asked D a question about feeding schedules and he misunderstood her and she yelled at him for not feeding the kids for over four hours. (We had, of course, she just misunderstood what he said.) I remember thinking that if she were my nurse for that day, I was going to shoot myself. She also said something about us being 'welfare cases'. Then, a pediatrician on call came in to check on the babies. Rosie told him right in front of us and the pediatrician that all the nurses are saying that we are too disabled to have kids and if left to our own devices, these kids wouldn't eat. Rosie was acting very self important, but the pediatrician seemed to ignore her.

Well, I find out that she thankfully was not my nurse, she was a CNA! Now, as a CNA myself, I respect the skills these folks have. But, shit, lady. Bring us our clean towels and shut up!

Actually, I am a bit thankful to Rosie for spouting off her rude ass mouth. What she said snapped me into my own bitch mode. I started taking control and not depending on the nurses to be helpful and you know, help me. I started doing everything myself from then on. I didn't let the nurses feed the kids. I didn't let them go to the nursery for breaks. I didn't even let anyone except D hand me a diaper. I got my sorry ass with its 25 staples from the C-section, lochia bleeding, itching, vomiting self out of bed every single time the kids needed something and didn't take crap from anyone after that. And it was FUCKING painful and exhausting.

And then, nurses started coming in and saying helpful things and supporting us. Nurses that weren't our nurses and we had never met before. They started saying that everyone is talking about us and that some other nurses are being really bitchy and saying that social services should be called. They said that the nurses had a big fight about us the night before and the head nurse had to call an emergency staff meeting to calm everyone down and tell them to shut up. This seemed to be the night nurses, but the day nurses got wind of it and I guess they were taking sides as well. The nurses that came in were rooting for us. Luckily, our nurse that day was on our side. She also arranged for us to get a night nurse that was also on our side.

The night nurse offered to help feed the kids and I told her, No thanks and she asked why. I told her I didn't want anyone to think we couldn't take care of our kids. I remember she said, "Fuck 'em. You are recovering from major surgery and it is our job to help you and I'm helping you." She hugged me and made me cry. She took the picture of all four of us in the hospital on the day we left.

Another little D family side story you'll enjoy. The hospital told us on the second to the last day we were there that we couldn't take the kids home in the car seats we bought because the shoulder straps were over 6 inches from the seat bottom and our kids were too little for them. So D asked his brother to take him to run out and get new car seats. It was a pain in the ass and I was especially unhappy because this was the "We don't raise other people's children" brother. D's brother came to pick him up and was acting very weird. When D came back with the car seats a couple of hours later, he just burst into tears. (It was an exhausting week.) I said, "what did he say to you?" And D said, "Absolutely nothing. He drove like a maniac, pumped up the radio to full blast, left me hanging at the stores so I had to go find a clerk to help get the car seats down, didn't mention the babies or anything, barely talked to me."

So then, the next day we get ready to leave, and who should show up to "help" us, but D's brother who came with his father. (Later, D and I would have a huge fight over this. I specifically asked D to not have his family come to the hospital that day. If anything, just his dad could meet us at my house and help us unload. But D didn't inform anyone of this.) He came in, slumped in a corner. Didn't say a word to me, didn't mention anything about the babies or why we were even there. I had to do my discharge and he just stared at me while the nurse is asking me such lovely questions like, "have you had a BM yet?" and "Nothing in your vagina for the next six weeks." It was lovely. The resentment and the tension was palpable.

You dream about these events in your life. You dream about taking your baby home from the hospital. About putting on his little going home clothes, carrying him out in your arms in the wheelchair, taking him into the outdoors for the first time, taking him into his new home for the first time. I did all this with D's brother acting like a total asshole. I don't care who knows it. It was horrible. I cried on the way down the hall as we left. I put Naim in his little outfit and held him up and said, "look at my little 5 pound baby!" and he ignored me and just stared at me. You don't want your new baby to be surrounded by such meanness. And I failed to keep my family from it. Since I had two babies who had to be buckled in car seats before we left the room (hospital rule) D's brother ended up carrying Aaron while Naim was screaming his head off. I watched him carry Aaron in his car seat as if he were carrying nothing more than a gym bag filled with sweaty socks. I was crushed. I couldn't stand it. We had to wait by the front door for D to get the car, and he put Aaron on the ground and said nothing to me. Naim was screaming and I was trying to comfort him and he just looked nothing but annoyed. I remember thinking, "well, go ahead and scream, Niam. You are doing what I'm not allowed to do." I know some people just aren't baby people, but this was more than that. My precious babies were nothing more to him than some annoying little piss-ants that ruined his weekend. When we got home, he came into my house and I kicked them out. Nicely.

That bugged me for a long time. That he had to put his resentful assholiness into our special day. And then one day, I was thinking about this as I picked up one of my babies and I just said to him, "it doesn't matter, all that D's family bullshit. They have their resentment and selfishness, and I have you. You and your brother make up for everything. Everyday is a special day with you and Naim and D and my family. It doesn't matter."

So, the epilogue. It took Aaron and Naim a good month to really start to get that sucking reflex. We had specialists and dietitians and nurses working with us and no one could get them to suck until they were good and ready, which ended up being around their due date. The first "preemie" month, they just had to sleep and be stimulated as little as possible. We fed them every three hours around the clock. The challenge was keeping them awake long enough. We would undress them and make them cold to keep them awake. We continued to squeeze little drops of milk into their mouth. We physically took their mouths and jaws in our hands and pushed them through the sucking motion. Five or seven milliliters at a time was a victory. Slowly, it increased to ten and then twenty. Slowly, they gained weight. One day, I realized that I was counting in ounces rather than milliliters. One day I realized that I wasn't counting anymore. I regret not having success with breastfeeding. By the time my milk came in and they had enough of a suck reflex, I had to go back on medication for my eye and I couldn't breastfeed anyway. I was loath to mess up our precarious success with bottles anyway.

I never spoke to Rosie again nor any of the M.O.M's. I still have her pillow. I'm probably going to give it to this new mom with twins.  I know that isn't fair to judge all the M.O.M.'s based on her. I'm sure there are many nice members who I'd love. I just never wanted to pursue it after my Rosie experience.

I gained 65 pound during my pg. Much of that was from the edema that screwed up my eye. I was up to 210 the day I gave birth. Two days later I weighed 175, and went down to 150 after about six weeks of the lochia period and the rest of the edema subsided. (Still working on the 150 and then some!) Three months after giving birth, I had a second eye surgery and got some travel vision back in my right eye. I also got glasses which helps with my glare and double vision from the retinal detachment. My kidneys and my PCOS and blood sugar are working as good as they've ever worked if not better. I have a reasonable diet and sleep schedule now, and work out several days a week. I still have to put up with a lot of edema in my face, which sucks.

I sent the nursing staff at the hospital a picture of my two healthy one year olds and a Christmas card. I said something on it like, "Just wanted you to know, the blind mom and the quadriplegic dad got the twins to eat. They are over 20 pounds now and doing great. Happy Holidays."

It has taken me a LONG time, and several crying spells and vents in D's ear, but I think I am really, really getting past the whole D's family thing. It affected me way more than I cared to admit. I'm a lot different from them and handle things differently, and I know that is part of our problems. But I've come to realize that so much of this has nothing to do with me. And that it is not my job, and probably not even possible for me to make them feel good and right about accepting me and my kids and D and our family unit. Here I've learned a lot and taken a page from 'the gays' and have learned how to open myself to those who will accept me and just let go of the rest.

And, despite all of the hard road to get these kids, I still want to shout on the mountain tops that "IT IS SO COMPLETELY AND TOTALLY AND UNQUESTIONABLY WORTH IT!!!!"

Note to Self: Yeah, About the Breastfeeding...SHUT UP!

The chic from Chez Miscarriage, who never ceased to crack me up but is unfortunately taking a long deserved break, talked about a "mother drive-by" which is when you are blogging or just walking down the isle of a grocery store and some other stranger mom who doesn't even know you says something disapproving about how you raise your kid. I never knew of this concept until I had kids. There are the attachment parenters and the Dobson/Focus on the Family parenters. There are the pacifier mongers and the no pacifier extremists. There are the circumcisors, and the