Archive | Ramblings RSS feed for this section

The precipice.

13 Mar

Everyone I know is pregnant.

Okay, not everyone. But a great many people that I know personally are currently hosting occupants in their uteri. Which is cool. I no longer feel that familiar, infertility-induced twinge of pain when I get that news. There is a twinge of something though.

I think it’s because, when your kid reaches a certain age, it’s only natural to address the question of number two. If it didn’t occur to you first, it certainly did after you’ve been questioned about it for the millionth time, and questioned you will be.

The thing is, I can’t easily answer that question for people without going into all the caveats, nuances and traumas that influence that answer. Do we want another child? Yes, but.

Yes, but we don’t know if we can conceive on our own. Yes, but we are worried that ART played a role in J’s birth defect. Yes, but we are still slightly traumatized by my pregnancy, J’s birth, and her infancy. Yes, but we don’t know when the time is right. Yes, but part of me wants to wait until J is more aware of her impending big sister status, and we can enjoy that excitement together.

Still, I feel my heart calling for number two. I crave a newborn, and all the typical newborn things I didn’t get with J. I want another chance at a healthy pregnancy and a natural delivery.

But I know that there are no guarantees. We may face secondary infertility and we may have to do IVF again. I may get pre-eclampsia again and I may have to have another cesarean. The baby might not be totally healthy and we might have to spend more than a few days in the hospital.

Five months ago, I became unexpectedly pregnant. We were not trying. But then again, we never knew why we struggled to conceive. So I took it as a gift. It scared the sh*t out of me, but it was a gift. And then spotting led to an ultrasound led to an ectopic diagnosis led to a shot that didn’t work led to increasing hCG led to please take my tube out before it bursts and I bleed out internally, which ultimately led to surgery to remove my right tube.

And honestly? I’m glad it’s gone. I realized that it might have been the problem, or part of the problem at least, all along. During my initial IF workup, they couldn’t see my right tube. They chalked it up to a muscle spasm, or something along those lines, but who knows.

So that’s where I stand. Wanting, but afraid. Somewhat of a precipice, but maybe it just feels that way. From here, I’ll have to just see which way the wind blows.

Advertisements

IVF? WTF.

21 Feb

I’ve been away a long time, I know. I still don’t know exactly what to do with this space or my other blog. I’m just not in a super share-y place these days (years?), at least not where baby J is concerned.

(That said, I made some real connections with some of you out there and seeing as I’m so infrequently here, I’d like to ask those of you who still read this, who feel connected with me still and feel so inclined, to please email me so we can keep in touch, or find me on FB if we’ve emailed in the past and you have my full name. Not on a blog is where I (not terribly often, I’ll admit, but sometimes) share updates on how she’s doing. But I will say this, she’s flippin’ gorgeous. And the greatest joy. But I worry all. the. time.)

Okay. Formalities out of the way, I’m back today because this is a space dedicated to trying to make a baby and all the ups and downs that go along with that pursuit. Lately, the thought of a number two has crossed my mind a few times. Specifically, a boy number two. Given the whole gender craziness we went through with J, DH and I both have this sense of loss. The moment we found out J was a girl, we were both given this mind-blowingly AMAZING gift, but we also lost this boy we had been dreaming of, bonding with, picturing. Loving.

In a strange way I feel like we’re owed our boy. That’s crazy I know but it’s a feeling I can’t shake.

Some ladies out there who were roughly “cycling” around the same time as me are already thinking of or in some cases are pursuing or already pregnant with their next little one(s). I regard this with this whole mix of emotions. On the one hand, I’m jealous. Jealous that they’re there, and they’re confident, and they’re doing it. Also? I’m scared. Because as much as I want it, I don’t know if it’s the right time. I don’t know if I’m ready to share my body. I don’t know if I could handle another traumatic pregnancy, and birth, and infancy. And I think you always risk that, every time a baby is made. And then there’s the big thing.

Which is, a not-so-insignificant part of me is terrified that IVF is to blame for everything that went wrong with my pregnancy and J’s health. Maybe that’s unfair to say, maybe that same part of me is just looking for something to blame or just to make some sense of it all. But I didn’t have any of the main risk factors for pre-eclampsia or gastroschisis. Except IVF. Which sucks because, there’d be no J without IVF, I’m painfully aware of that. But I’m terrified that if we did it again, we’d face the same or some other struggle as a result.

In my darkest thoughts, I’ve always worried that we forced the issue with J. We MADE Mother Nature give us a baby where maybe she wasn’t ready to, or ever going to. And so, we paid a price. WRONG, I know. Effed up. But these are thoughts in my head sometimes.

And then I think of all the healthy babies born as a result of IVF. I wonder if any of our embryos are destined for a breathing existence on this earth, outside of their cold frozen little petri dish or glass vial or whatever they’re in. Do we owe them something? Now that we’ve created them? Or would it be better to try on our own, just try, because who knows? Maybe? Before we tumble down that path again.

Can we even get pregnant on our own? The curse of the unexplained. We did once, unsuccessfully, a long time ago. Will our new insurance even cover infertility? Another dark curtain I’ve yet to pull back.

More importantly, are we ready. Sometimes we think all the struggles with J would go by much faster if we had something else to focus on, something positive. Or would that intensify the whole thing. Make it that much harder? Is it unfair to her to make another baby right now? Is it unfair to not?

J is nine months old today. Things are not where I thought they’d be by now, with her health I mean, but I’m making my peace with that, or at least desperately trying. When she turns one is when we might get serious about all this but clearly, many things need to be figured out, sorted through, dredged into the light and dealt with before that can happen. But the first step is figuring out what those demons are. And that’s what I’ve always adored about IF blogging.

So if you’re still there, thanks for listening.

Pity

5 Aug

We all say we don’t want pity when life hands us a heaping pile of lemons. But do we mean it? Pity has a negative slant to it but isn’t pity, when kindly intended, just another word for sympathy?

That’s the other reason it’s been difficult to share too much of our situation with those we know and for me here on this blog. I don’t want to look like I’m trolling for pity. I don’t want to be all “woe is me,” even though sometimes? Woe really IS me.

I do want sympathy but I don’t want pity. Not because pity is a dirty thing but because I don’t want to be pitiable. It pains me to think of people saying “I’m sorry” to our faces, while thinking “thank god that’s not me” silently to themselves. I never thought I’d be one others would pity, especially not at this part of my life. Sympathy feels good but pity makes me sad. Thinking of others pitying us makes it feel like this really is as bad as all that.

And yet I want to say to some, don’t skip over my pain. Don’t minimize what I’m going through. Don’t talk to me like everything is normal because it is not. I feel this distance growing between me and my closest girlfriends because they just can’t begin to understand.

I know, I sound impossible to please. The truth is that the needs of someone in the midst of a serious and ongoing personal situation like this are ever changing. I need people to be there for me and yet I need space. I need friends and family to walk that fine line between pity and sympathy. I need to be handled with care without feeling like I’m being handled with care.

You’d think the people here in the hospital would be the best at walking those lines but some of the comments we’ve had from people you wouldn’t believe. Last week I had J in the Baby Bjorn and was walking her around the floor while also wheeling along her IV pole when someone with a staff badge passed me, looked at our pole and said, “that’s a lot of baggage!”

How do you respond to something like that? A cutesy, “We don’t travel light!” with a laugh. Or a more pointed “thanks for the reminder!” Because I had almost for a second began to get used to OUR normal before you reminded me how fucked up it really is.

Or there was a doctor, the head of surgery no less, who suggested on rounds that maybe I don’t hold her enough as the reason she had been vomiting two nights in a row. That slayed me. I make every effort to hold her as much as possible, just usually not at the time rounds come by.

Other docs are amazing though. One surgeon, a male no less, had the awareness to acknowledge how good it is that I managed to have some breastmilk for her (about a month’s supply, for what it’s worth), since that’s the easiest thing for her newly working bowel to digest. I’ve thought about a whole post on the challenges of exclusively pumping while living in the hospital but how many different ways are there to explain how much it sucks to exclusively pump while living in the hospital (and having gallbladder attacks and your gallbladder removed). I did my best but in the past weeks despite my efforts, my supply has gone down and down. I’m now dry, and sad for it because I so wanted to experience breastfeeding J. We had a few times where we practiced with latching and it was wonderful.

Oh well. Next baby. (Now that really is a whole other post.)

Trying

4 Aug

I don’t want to complain. That’s part of why I’ve been so silent. I don’t want to complain and yet, I can’t accurately convey what this is like without feeling like I’m complaining. We have it so good and yet we have it so hard.

I met a woman in the garden yesterday who’s 13-month-old daughter had open heart surgery earlier this week. She was given a 70 percent chance of surviving the surgery and a 50/50 shot at not having neurological damage. The girl both survived the surgery and seems to be doing great, and the mom is just waiting for her to be discharged from the cardiac ICU, back to the regular floor. Then they just have to get her feeding again and they can go home. Back to her seven siblings at home. And then, the mom says, then they just have to fix her cleft lip and palate and her right hand (unspecified problem there) and the girl will be all set, other than the fact that she is missing an ear and the two lobes of her brain are fused together.

There are stories like that all over this place and it really puts things in perspective. I feel oh-so-thankful that we have an otherwise normal healthy baby, other than the fact that her bowel was disconnected in two places and is now learning to work for the first time. And yet I am also flooded with nasty feelings of jealousy when I read about other mothers who get to breastfeed from birth, who never have to panic about poop, who get to take their baby to places. I can never tell if it’s worse when they’re going on about how great it is, or when they’re complaining about the difficulty they’re having doing something we only get to dream of.

Remember that whole debate about the Pain Olympics? How terrible it is to compare your pain to others? It’s all pain, right? Comparing levels of pain is arbitrary because some people experience a paper cut as a disaster and some split their time between a toddler and a baby in Brooklyn and their baby’s twin hospitalized for an esophageal atresia and heart condition in Boston and somehow manage to have their hair brushed and face washed and smile.

Me, I’ve been playing it with myself. I keep thinking how my lowest lows during infertility don’t hold a candle, pain wise, to this. Because at least you could deal with that pain in the midst of your normal world that you created for yourself. At home, with the people, pets and objects you love, in your own routine. Now I just get to feel jealous not only when people conceive without trouble, not only when they have easy pregnancies and deliveries, not only when they come home from the hospital days or, hell, even weeks, after their kids are born, but also when their cup full of worries includes thoughts like, did I pack enough diapers for the trip to Target, and not, why is my baby’s g-tube site bleeding like crazy when they change the dressing and will her central line get infected if that rash gets any worse?

I learned recently about how dire our circumstance really is. Gastroschisis without complications is a relatively easy fix and short hospital stay (4-8 weeks) with a great long term prognosis. Gastroschisis with atresias is so much worse. One of our nurses with whom we’ve become very close accidentally told me a story about a gastro baby who went home, then came back to the ER with diarrhea, and then suddenly and unexpectedly died within minutes when his belly ballooned up.  This sent me into a tailspin of worry and dangerous Googling, which led to an article that mentioned something along the lines of gastroschisis with atresia cases having a 40-60% mortality rate. Which essentially was a bomb going off, disrupting my whole world.

I know I just have to focus on us and where we’re at. We’ve come so far. J’s digestion system is not only connected but slowly working. We are now working on getting it used to processing a certain volume of Pedialyte before we go ahead and introduce breastmilk (we did try breastmilk at one point which led to vomitous disasters). Eventually she will have to learn how to tolerate breastmilk on a regular basis, taking it in, keeping it down, processing and absorbing, and pooping it out normally. Eventually this will cause her to gain weight through food she’s taking orally, not through her veins. Eventually this will be grounds for discharge.

But not for a while.

In the meantime, we sleep on cots. We worry over every diaper and dressing change. We watch like hawks every time her vitals are taken. We make our own notes and discuss the current plan of care and prepare for the next time we’re face to face with our surgeon. We live publicly. Our room is not our room and our door does not lock. You get used to crying, fighting, changing, pumping, farting, and any other manner of private activities in a place where at any moment, any number of strangers can enter. You watch your breastmilk supply that was never so great to begin with but that you fought to maintain through a gallbladder surgery a month after your c-section, through your daughter’s second surgery and subsequent painful NICU stay, wither and die before you’ve ever had a chance to feed her at the breast. And you deal with feelings of inadequacy for that, knowing that your breastmilk is the best thing for her delicate bowel.

You fight the depression and you grab a hold of anything that makes you laugh or feel good and you relish all those amazing smiles your daughter gives you and all those amazing moments where you know she knows you’re her mama and you try really fucking hard not to complain. Not to compare yourself to others. Not to worry about your dwindling maternity leave and bank account.

You try not to wonder when the universe is going to stop trying to teach you that you’re not in control and you need to be patient because what the FUCK, I get it already. You try not to miss your dog, your cat, your comfortable bed, your shower that actually has pressure and actually gets hot, your kitchen where you cook meals instead of ordering takeout every day or worse, hospital food, and the sweet freedom of getting to take yourself and your family somewhere without being chained to an IV pole and confined to the many walls of this great institution.

You try not to feel weird about the fact that you’re waiting to return to a life that is unknown to you, now that there’s a baby in it. You fight the darkest of thoughts that she…

And instead you wait for those few and far between connections with those who actually get what this is like. And you try to believe that one day there will be a [D] symbol (meaning pending discharge) next to your daughter’s name on the computer by the nurse’s station.

That this will end.

And all will be okay.

Right now

2 May

I listened to a really beautiful new RadioLab this morning about an infertile couple who finally conceived via donor egg, only to have their daughter born at 23 weeks 6 days. They touched on so many things I could relate to directly. The pain of infertility. The scariness of being a parent. The uncertainty of the concept of viability. The insanity of the NICU. They even briefly mention a baby with gastroschisis.

So maybe I did cry a little a lot all the way into work, and then stopped to pee and treat myself to a iced caramel macchiato because shit, this is hard right now. Two nights ago I completely lost it and wailed to DH about how terrified I am and how sad I am that my tiny, helpless little baby has to face so much the moment he’s born. DH asked me what my worst fear was and I said it’s that Turtle will die. Right, isn’t that obvious? That hasn’t even crossed DH’s mind, it’s not even one of his main worries. He’s such a rock and he cooks and cleans for me and handles everything so well and I swear, he’s the greatest gift I’ve ever received. I hope my son is just like him.

But honestly, that podcast gave me hope. Babies are so amazing and strong. They talk about how sick babies demonstrate their will to live. I know Turtle has that will and he will fight (even though he doesn’t even know the wonderful life we have planned for him) and he will be okay. One day we’ll go camping with him. One day we’ll take him to New Orleans and lift him above the crowds onto a ladder chair and let him catch the Mardi Gras beads. One day we’ll feed him injera and talk about Ethiopia, where his father was born, and another time, he’ll sit around a table with his two amazing uncles and his Russian grandmother will feed him blinchiki for breakfast. There will be reading, so much reading, and so much singing.

At one point early on in the podcast, the father said that having children means embracing a future that you can’t control (cue the first round of tears). I can’t think of a better way to describe it.

Boston

18 Apr

356_641953298290_7853_n

I’m not sure what I can say that hasn’t been said so eloquently already. Should I preach my love for this city? The city where my parents met and fell in love, where my husband and I went to college, came of age and became adults? How we were steps from Fenway Park when the curse was reversed and afterwards during the riots?

Should I tell you about all the times I stood on the sidelines on many a glorious Patriot’s Day? Shouting “one mile, one mile!” with my friends as the race passed right by my first floor bedroom window on Beacon Street? How it could have easily been me standing there near the finish line, as we almost always wandered down that way as the race wound down? How it very almost was my coworker, standing 50 feet away from the second blast, or how my husband, a volunteer at mile marker seven on Monday, had been invited down to the finish line to welcome the runners?

I remember the exact moment I fell in love with Boston. It was one of the first times I drove alone in the city and I was going up Beacon Street from the Common toward Kenmore Square. It was late afternoon, in late spring, one of those first deliciously warm days of the year. The windows were down, the sun was pouring through the trees and around the brownstones and after four years of living there the city felt like home, like it was truly mine. And though I always felt comfortable here, even from my first orientation visit during high school, in that moment, it became home. I’ll never forget that feeling. It’s part of what keeps me here, more than five years after graduating from college.

Can I even begin to express the way this town, whether you’re from here or not, lifetime resident, college graduate or even one-time visitor, gets in your blood?

I think President Obama said it best today, when he said:

So whether folks come here to Boston for just a day, or they stay here for years, they leave with a piece of this town tucked firmly into their hearts. So Boston’s your home town, but we claim it a little bit too. I know this because there’s a piece of Boston in me. You welcomed me as a young law student across the river — welcomed Michelle too. You welcomed me  during a convention when I was still a state senator and very few people could pronounce my name right.

There’s so much I’ll never understand in this world. Violence, in any form. Voting against background checks when purchasing items designed to kill. Picketing funerals. Refusing equal rights to all individuals. These things I just don’t get and never will.

But there’s so much more good than bad. Boston will keep its arms open to all those who come here seeking history from its storied streets. To those who come seeking knowledge from its fine institutions. To those who come seeking healing from its renowned hospitals.

For me, it’s where my story started, where I learned, where I got married, and very soon, where my son will be born and healed. I couldn’t be more grateful for this city. And that’s all I have to say about that.

In case it makes you feel any better…

5 Mar

Kimmy K is officially being compared to a whale. Just sayin’… I know I feel a little bit better about my 30+ lb. weight gain (and counting!) after seeing this.

photo