Archive | August, 2013


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.)



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.