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.

Because I owe you

14 Nov

Hi. I am alive. We are alive. This blog, however, has been very dead for awhile.

I’m sorry I disappeared. We brought baby J home from the hospital for the very first time on August 28th after 101 days inpatient.

At first my excuse was how busy and stressed I was, because we were so busy setting up what is essentially a mini hospital set up in our home. J came home on IV nutrition which is a very big and stressful and involved thing for reasons I can’t begin to go into. And we were so stressed trying to figure out her bowels. She threw up a lot that first month and progress was excruciatingly slow.

But then things turned a little corner and we settled into our routine and she started eating and pooping more and throwing up way less. The second month home was much better. But still I didn’t blog because I didn’t know how to anymore. I honestly couldn’t figure out what tone or content or approach to take. I didn’t want to be too light and undermine what we’re going through, nor did I want to be too serious. I didn’t feel like glossing over things nor did I have the energy to explain all the details.

In a way, I feel like I failed the readers of this blog and the members of this community that gave and gave when I needed it so much. I thought about running away forever but that didn’t feel right either. I owed you an update, even just an acknowledgment. So here I am/it is.

We’re good, she’s growing like a champ, she’s so happy and engaging and beautiful that everyone falls in love with her instantly. We still have a few months yet on PN but one day we’ll hook her up to the pumps for the last time. One day in the next few months (I hope), we’ll go in to Children’s to have her central line surgically removed. This will, hands down, be the happiest day of our lives. When the threat of bacterial infection and the line getting pulled out is removed from our constant list of worries.

Until then we wait and take care of her to the best of our abilities. In the meantime I have left my job because her care is way too involved for anyone other than a trained nurse or, ironically, me or DH, to do. And it needs to be me. I know her and her history more than anyone ever can or will (other than DH who is the best partner in this anyone could imagine). Money will get tighter each month but it’s okay. It’s worth it. And it’s not forever.

I also started an Etsy shop. I needed something else, some other purpose and outlet and so mini mintery was born: https://www.etsy.com/shop/minimintery.

As for the future of telling our story here on this blog, I don’t know. All those feelings about how to be here remain. I’d like to be able to come back now and again but will I? I don’t know. What I’m saying is, this isn’t a break up, I don’t want to be exes, but maybe just friends with benefits?

To those who would like to keep in touch, email me. Or you can try my other blog though I’ve done a pretty crappy job blogging there too: http://www.thespottedduck.com.

That’s all for now. I love you all.


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.


26 Jul

Maybe I’m scared of diving into my own complicated web of feelings. Maybe I’m not as open to sharing as I once was. Maybe I’m just too busy, too worried, too stressed, to bother with blogging. But whatever the reason, I’m not feeling up to posting right now.

I did want to let you all know that baby J is doing well (“Turtle” no longer seems apt). Her second surgery to repair her atresias went well and her recovery is going well and we continue to watch and wait and hope as life here in the hospital, well, goes on. There is no expectation or timeline of going home in the near future. Thank you all so much for your well wishes over the past few weeks. They’ve easily been the most challenging of my life.

I’m continuing to mull over what I want to happen to this space at this point. For now, I know that blogging feels like a chore and another chore is the last thing I need right now. This isn’t your typical “I’m a mom now, what do I do with my infertility blog?” question. It’s more like a “my baby has been in the hospital since birth with a threatening birth defect and complication, how do I cope and function?” kind of question.

Until I know the answer, there may be a bit of radio silence around here.

It’s happening

3 Jul

Well I was planning to blog today about something else but things have changed. Our surgeon came in this morning at 7:30 and woke me up to tell me that he’s decided to move Turtle’s surgery up to NEXT THURSDAY. It was supposed to be July 26th but he feels she’s growing and doing so well that those two extra weeks of waiting won’t be necessary.

As I said on Facebook, I am simultaneously excited and freaking out. I have been looking forward to this surgery with a strong mixture of hopeful anticipation and utter dread. My husband, the pragmatist, doesn’t get it. Is it a mama thing or what? My heart is just wailing, they’re gonna cut my baby open.

He says, but it’s necessary, they have to, she’s broken. I know this, logically, of course. She literally cannot live like this forever. Her bowels are broken. She cannot process food and absorb nutrition. You can only be on parenteral nutrition for so long before your liver is damaged.

I know this. But I just think of them wheeling her alone into surgery, without me. Of them messing with her consciousness and putting her to sleep. Of her tiny, precious body lying vulnerable on the table. Of the scalpel cutting across her entire belly.

Will she feel alone? Before they put her under, will they comfort her, talk sweetly to her? And how will I cope during those four to eight hours? I can’t even imagine what I will do with myself. Sit catatonic in the massive surgical waiting room here? Pace manically? What will she look like when she comes out of surgery? Will she be sedated? Will they take all her pain away? Will she be scared when she finally wakes up? Will she be swollen?

These are the real mama questions I want to ask but with the surgeons we have to ask the logical questions, not the emotional ones.

I know they’re experts, the best in the world. I know she’s a champ. These platitudes only help a little. What helps is thinking of this as a necessary step, a big leap forward, toward going home. Toward our real life. THIS is all not real. We don’t live in a hospital. I don’t have a nurse call button or an endless supply of supplies or people coming in to take vitals or an IV pump or a fold out chair for a bed in real life.

Very soon I won’t have a baby with an NG tube and a central line and all these things coming out of her that we need to be extra careful about. Soon she’ll only wear mittens so she doesn’t scratch herself, not so she doesn’t yank her tube out of her nose, or worse the central line or G-Tube that are stitched to her. Soon I’ll be able to pick her up and WALK AROUND. Without a nurse disconnecting her from things. I’ll just scoop her up and hold her any way I want.

We have a beautiful, real life waiting for us out there and the wait just got a little bit shorter. That’s the only thing that helps me cope with the fear. I wonder if it’s somehow connected to our infertility and loss as well. The feeling that I could still lose her. That this is so good it could possibly just be a dream. I know I won’t lose her. I know she’s here forever now. But that extra layer of irrational fear haunts me. IF’s parting gift perhaps.

So she’ll be in surgery next Thursday. Please mark your calendars and think good thoughts for our girl that day, all day long. After surgery she’ll likely go back to the NICU for a few days for the early part of the recovery. This is better because she’ll be under the close watch of the most experienced of nurses, but it means we’ll give up our private room on this floor. This room has really become home and I will miss it. When we get back to this floor, who knows where we’ll go. Hopefully we’ll still be able to arrange to both sleep here. When she’s in the NICU, we can’t sleep there. We can be there, anytime we want, but there’s no way to sleep there. They have rooms somewhere in the hospital for NICU parents but they go quick and they often run out of availability.

Eventually though we’ll come back to this floor and the real work of beginning feeds will start. She may have to have an ostomy and a third surgery, depending on what they see when they get in there. Our hope is that they will be able to repair the blockages and reconnect her bowels next Thursday. If they can’t, this ostomy plan will go into place and will likely delay our homecoming by about two months. If that happens, I very well may have to quit my job, as I can’t in any way fathom going back to work while she’s still in here. And frankly, even after she gets out, I want some time with her at home. I feel I deserve it. I feel cheated out of my maternity leave. Maybe that’s wrong to feel, but I do. Which of these scenarios we’re looking at will be a lot clearer after she gets out of surgery.

After she gets out of surgery next Thursday. Next Thursday. Holy shit. My baby.

If I don’t blog before next week, please keep us in your thoughts and I’ll try to come back as soon as possible with an update on her condition, even if it’s just a few lines.

Catch up

27 Jun

The past two weeks have been one thing after another. Just when we’re starting to settle in to a routine here at the hospital and finding our sea legs, I wake up with searing chest pain after I go to sleep on my birthday, unable to catch my breath.

We left Turtle alone with the nurses for the first time ever while security rushed me over in a wheelchair  to the Brigham ER. Six hours later, one chest X-ray, one CT scan, a heart ultrasound, an EKG, after giving blood and urine, they ruled out preeclampsia complications and an embolism. They gave me morphine for the pain, which was wonderful, until it wore off and the pain was still there. It ultimately lasted about nine hours. We got back “home” to Children’s, promptly got colds, and hoped it would never happen again. The ER attending clearly thought it was just a panic attack because he told me to just “breathe through it” if it happened again.

It did, on Father’s Day around noon. I was completely incapacitated, just lying on my bed here in the hospital, in the worst pain I could imagine. We didn’t know what to do. Another trip to the ER? We couldn’t see what they would do differently. The pain lasted about twelve hours this time. My parents suspected it was my gallbladder, so I got myself a new PCP at Beth Israel and saw a resident there the next day.

Two days later, a gallbladder ultrasound confirmed that there were stones present. I scheduled an appointment with a surgeon for nine days later and hoped I’d make it. But of course I didn’t. On Friday night I had another attack and this time I couldn’t take the pain. So at 3 am, DH put me in a wheelchair and rolled me to the BI ER. There we waited with people coughing all around us while they gave me morphine (sweet relief!) and ordered another ultrasound.

They ended up admitting me to the hospital on Saturday afternoon and long story short, I had my gallbladder removed laproscopically on Tuesday morning around 4 am (after being an “add on” to the surgery schedule all day and continually being bumped). I spent three and a half miserable nights away from my baby girl, most of the time just sitting around, starving “just in case” I needed to go into surgery, trying desperately to pump and watching my supply dwindle to next to nothing (where it remains for now). More than a few meltdowns were had. I fully acknowledged my newfound fear of dying, now that I have a baby.

But. I was discharged 11 hours after I went into surgery and taken right back to Children’s to see my girl. I missed her so much! I missed just being in this hospital room with her all day. I missed all our favorite nurses who have become our friends. As much as I’ve hated being here, I suddenly saw it in a new, more appreciative light. We may not be home, but at least we can be at the hospital all together.

Everyone keeps telling me how strong I am. I still don’t understand it. I really feel like I’m just getting by and doing what I absolutely have to do, they only things I can do.

ps. One quick point of clarification: Turtle is not in the NICU. She cleared the NICU after two days. She’s very stable and just needs to keep growing on TPN. We’re on a surgical floor for infants and toddlers. She will be back in the NICU for a few days after her next surgery, which is scheduled for four weeks from tomorrow.


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