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.


17 Responses to “Trying”

  1. Courtney August 4, 2013 at 9:40 pm #

    Hugs and love to you, your husband, and J. I know it doesn’t help, but please know that I think of you guys a lot.

    My sister had a very sick baby once (right after she turned 1) and almost lost her, but still compared her experience with those around her who “had it worse.” I know it’s natural, but I am just here to tell you that sure – your situation is “better” than a lot of the people you’re meeting there at the hospital – but it’s still damned hard. The “pain Olympics” is something that I think we all take part in – not out of competition – but in search of people to relate to. I called it “finding my tribe” when we were struggling with IF – and I think I’d do a similar thing if I had a sick child. Relating is important – and surrounding yourself with people who understand your challenges and struggles can feel life-altering – because someone finally “gets it.”

    I’m not sure I have a point here – but I just want to say that you go right ahead and compare your experience with your prior experiences, those of others, etc… because it’s normal. Do what you need to do to feel understood and supported.

    • Shelley August 4, 2013 at 9:45 pm #

      I get your point Courtney and I thank you for continuing to keep us in your thoughts. I guess another hard thing is feeling like my tribe is narrowing. I can only really connect with those who have gone through IF AND had a long term hospitalization with their baby. How many people like that are there out there? I do know of one mom on our floor who did IVF and whose son has seven major things wrong with him (it’s some set of defects that often present together). I’m not supposed to know this though, one of the aides disclosed it to me accidentally. I really want to meet her and talk with her though but there’s no easy way for me to do this, especially since I’m not supposed to know what I know.

  2. slese1014 August 4, 2013 at 11:04 pm #

    OH honey…you are in such a hard place. I can’t even imagine what you’ve been through even though it’s my job to take care of families just like yours. Know you are doing the best you can with your circumstances regardless of who has it worse or better than you right now. I was talking about your situation last night at work and so many of my coworkers nodded along with how much of a struggle it’s been for you. And we all collectively said we’d keep you in our thoughts and prayers hoping you and your husband and J get to go home soon and start to normalize your life as a family. Hugs to all of you and always thinking of you 😀

  3. Her Royal Fabulousness August 5, 2013 at 1:00 am #

    I don’t even know where to begin with saying how sorry I am for everything you are going through. All I can say is that I am sending warm, healing thoughts to you and your beautiful little girl.

  4. Mrs green grass August 5, 2013 at 1:02 am #

    This is my first time reading your blog and I just want to say I’ll be thinking about you! It’s not fair to have to ignore or minimize your pain or not write about it because everyone has something. You still have this and it’s a huge deal and it’s not fair at all! I’ve had so many similar thoughts of bitterness, infertility, bf’ing, 5 month NICU stay (25-weeker preemie) and you never quite get over it. But I hope after all of this that you have a happy ending.

    I might have some extra breast milk depending on when you need it and I bet you could find lots of people willing to donate if that interests you.

  5. alissa s August 5, 2013 at 1:52 am #

    You have been in my thoughts a lot lately. I am just so sorry for what you are going through and how scared you must always be. Go ahead and vent, complain, compare…whatever helps. You need to get it out and your blog is a perfect place to do that. You and your baby deserve more and its normal to wish for that. This time will pass but I know it doesn’t help in the moment. We are here for you.

  6. steph50 August 5, 2013 at 5:04 am #

    Sending love and hugs your way. You are obviously an amazing mom, your little fighter girl is so lucky to have you! Xox

  7. chon August 5, 2013 at 5:11 am #

    Not that I want to engage in Pain Olympics warfare but man on the scale to 1-10 on the pain Olympics monitor I would say your pain is clear nudging 11. So you go right ahead and use this place to verbalise your feelings about what you are going through and it is more than ok to tell us that you are struggling, that it is hard and that you feel ripped off by everything you are going through. Because honestly you are handling it with a hell of lot more grace than I ever could (and trust me I would be blaming the entire universe). All of us have battled to become parents and everyone’s pain is real and substantial but I think it is safe to say some of the pain TRUMPS ALL OTHERS this being a very real case of it.

    As the others said this is your space to vent about your feelings and parenting after IF is so hard especially when you have a life threatening condition. I am hoping that everything will progress well and that soon you can take your little girl home.

  8. Esperanza August 5, 2013 at 6:00 am #

    I agree with Chon. That shit is an 11 and you should feel free to process it in whatever want you want to on this blog. Sure there are people worse off than you. There are ALWAYS people worse off than someone else. That doesn’t mean what is happening to you isn’t horrendous. Because it is. It’s so, so hard. I can’t even fathom. And you have every right to do what you need to do, here or anywhere else, to get through it.

    I’m so sorry you’re going through this. I think of you and Turtle often and hope that things are going well. I’m sorry you still have so much father up the mountain to climb. I’m sorry the top is shrouded in fog and you simply can’t see how much farther you have to go. And I’m so, so sorry that once you get to the top you have no idea what you will see from the precipice. It’s a terrifying situation to be in. And don’t let anyone else you meet’s story make you feel any differently about it.

    Abiding with you.

    • Shelley August 5, 2013 at 2:28 pm #

      Thank you Esperanza and I so agree with your mountain analogy, that is actually perfect.

  9. Alicia August 5, 2013 at 6:36 am #

    This is such a brave, insightful post. Thank you for bringing us in to where you guys are at right now. Please know that you and your family are in my thoughts. Vent away … you are not complaining nor is your painful experience diminished by others’ struggles – this is your journey and it’s fucking hard. Hugs Shelley.

  10. jjiraffe August 5, 2013 at 4:04 pm #

    Oh, Shelley. I read this post with tears streaming down my face.

    I wish I had words of wisdom, why this and all the other situations you explained in this post happen, why this world allows such scary complications to happen to babies. Why the “11s” have to exist. Why some have it so easy and others so hard.

    I read “Wild” by Cheryl Strayed last night (incredible book) about how a woman was able to reconcile the tragedies of her past with living a good life. A review of the book stuck with me, I’ll paraphrase it: “Wild lays bare the essential truth of adulthood that many never face: tragedies happen, life doesn’t turn out the way we wanted but we can live through it.”

    Our society doesn’t like to dwell on this essential truth so when things are hard, it can be so isolating since no one knows what to say or do.

    The level of grace you’ve displayed since day one is one hell of an inspiring thing. I think about you and Turtle all the time. And hope that I can face my parenting challenges with even 1/10th of the extraordinary amount of love and goodness you have. What a wonderful mother you are.



  11. theyellowblanket August 5, 2013 at 7:11 pm #

    What a difficult place to be—I’m so sorry you’re there. I’m sorry you’re being robbed of all the things you yearned for in early motherhood.

  12. Kate @ Infertile First Mom August 5, 2013 at 8:20 pm #

    Shelley- I think of you so often, especially since J was born. But this post had me in tears, and you’ve been on my mind a lot more since I read it, minutes after you posted. I wish there was something I could do to minimize or take away the pain, but obviously that’s not possible.
    Just know that I am thinking, praying, and hoping that you find strength where you didn’t know you had it, that the docs use the most skilled, precise and gentle hands possible, and that your daughter’s resilient little body continues to fight hard and heal fast… so that you and your family can take her home and begin living the life that you have been waiting for and so deserve.

  13. Ms. Future PharmD August 7, 2013 at 1:01 am #

    Abiding with you as best I can. Know I’m out here in my little corner of the world, cheering you on, hoping for all the best and even more strength to help you all through this time. Feel free to vent. It’s a sane way to cope when things are bad. This is your space and you should feel safe in it.

  14. KeAnne August 9, 2013 at 7:55 pm #

    Thinking of you and your family and sending you hope and strength. Please give yourself the space to vent. You are going through extraordinary, terrifying times. Much love to you.

  15. Rachel lewis August 10, 2013 at 5:08 am #

    Thanks for this honest post. I’m sorry for all you are going through. I wish after infertility you got a free pass to bypass the oh-so-many postpartum struggles that could happen. Isn’t struggling to get preggo to begin with enough?

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