Update on J

8 May

Juniper is growing bigger and stronger every day and we are so proud of what a true champ she has been through everything. The whole process of rehabilitating her bowel has been so much longer than what we originally planned for but we have tackled it all as a family and I guess that’s what matters.

Kids with bowel issues, it’s a never ending roller coaster. As you all may recall, from birth through her bowel repair surgery at 7 weeks old, J had to receive all of her nutrition intravenously. It’s called Total Parenteral Nutrition (TPN) and it’s basically IV fluids that have a lot of extra stuff that your body needs to grow and thrive. So instead of processing things through her bowels (aka eating, absorbing nutrition and pooping out the rest), she was processing everything through her liver. (Side note: some kids’ livers can’t take this for very long. The fats they use can cause the liver to fail, which is why a Children’s doc invented Omegaven which is a fish oil-based IV fat. It has been a true life saver for many though it is very expensive and you have to get special permission to be on it. Luckily, we haven’t had to do this with J.).

Since her surgery, we’ve been on this looooong journey toward weaning PN and getting her to take enough nutrition either by mouth or through her g-tube to sustain growth. In the meantime, she has been on PN and lipids overnight, every night, since we got home from the hospital. We prepare her PN in a sterile manner and hook her up to her pumps right before bed and in the morning I unhook her (all of these things involve masks, gloves, alcohol wipes, saline and heparin flushes, etc.). Her PN is delivered through a central line, which is like a permanent IV that is implanted in a major vein and comes out through the center of her chest.

Caring for a central line is hard work because there is not only the constant risk of it getting pulled out by accident but you also run the risk of coming down with an infection in the line, which could lead to blood infection, which ultimately, if not treated immediately and correctly, could be fatal. Few people in our lives understand what it’s like to live with that hanging over your head every day. It’s awful. Any time she has a fever (which luckily has only been twice, once for a UTI in November and once for RSV in February), we have to hightail it to the ER at Children’s in Boston to get blood cultures going and start her on some serious IV antibiotics until the cultures come back (which can take up to 48 hours). They start the antibiotics proactively and if your cultures are clear, then stop them (instead of waiting for a positive and then starting, which could be too late). In the meantime, you are admitted to the hospital to wait it out.

We were doing great with the PN weaning until in late December, she suddenly stopped eating well. She started refusing bottles, vomiting frequently, and having diarrhea. And worst of all, losing weight, which caused us to actually have to increase her PN (the OPPOSITE of what we wanted). For a long time, the docs didn’t know what was up. They thought she had a stomach virus and then developed a bottle aversion as a result and/or some kind of allergy. It wasn’t until we went in for the RSV and she was on heavy antibiotics for 48 hours and we came home and she suddenly was back to DOWNING bottles like it was her job (which hey, it kind of is), did we realize she has Small Intestine Bacterial Overgrowth (SIBO). It is what it sounds like, an overgrowth of bacterial in the small intestine (where there shouldn’t be much bacteria). Common for kids who’ve had bowel surgery, motility issues, and who have been on antacids for a long time (J has/had all three).

As a result we lost a lot of progress. BUT we are finally getting control of the SIBO. J takes antibiotics every other week to keep it in check. When it is in check, she eats so well and gains weight. Since starting antibiotic treatment, she has started gaining weight again. All this is the long way of being able to tell you this and have you understand the triumph: we are no longer on PN. Now, we are still giving her IV fluids every night. That’s part of the weaning process. You start replacing nights of PN with nights of IV fluids (which have way less calories). To put it all in perspective, in December we were down to 3 nights of PN/4 nights fluids. As the result of the SIBO we had to go back to full 7 nights of PN. We finally started weaning again in March and just this week went from 3 nights PN/4 fluids to ALL FLUIDS.

This is huge for us but we’re also cautious and trying not to get too excited. What it means is that if she is able to keep gaining while on only IV fluids, they will go to every other night, and then down to nothing. And if after that she is STILL gaining weight? We’ll wait about 4 weeks and then she will go back into the OR to get the blessed central line out.

I love her central line. I appreciate what is has done for us. It has literally kept her alive since she was born, delivering the nutrition to her blood stream that she could not get any other way. But I cannot WAIT to get that thing out. I was remembering this morning the first time I saw it. I was in her room at Children’s (our first room, a double – ugh), and they were doing a dressing change (this is a sterile procedure that needs to be done once/week). I stepped back to let the nurses work and caught a glimpse of that thin white line sewn to her tiny chest. It scared the crap out of me. I remember the first time a nurse let me flush it with saline. It seemed like the craziest thing! I didn’t know then that I’d be doing that every day, twice a day, and it would become second hand to me.

Most of all, I remember a dream I had many years ago, during the throws of IF. I dreamt I was holding my daughter and I was FILLED with joy. I knew she was mine (biologically) but something about her wasn’t mine. I didn’t know what at the time but the dream felt so real. It felt like seeing the future. That joy stayed with me when I woke up and I always knew I was destined to have a daughter. When our MaterniT-21 test said we were having a boy, I was shocked because I KNEW I was supposed to have a little girl. Now I know what that dream meant. I’m saying all this to put in perspective what it will mean to have her line out. Some part of her is still not mine. It belongs to the line. I want to go swimming with her, take a bath with her, go anywhere with her without worrying about germs, fly with her, travel with her. I want all of her to be mine.

We are so close now and everything is going pretty well and it’s scary. I don’t want the bubble to burst. I’m terrified of not getting over this last little hump to the promised land.

Advertisements

Ruling my roost

7 May

photo(19)

Ladies and (well honestly) more ladies, I have been inspired. I’m on a mission to become master of my domain. Ruler of my roost. Basically, the time has come to get all clean and organized up in here.

My house isn’t terrible, like not Hoarders terrible, but it’s kind of all the time cluttery. And when I take the time to clean, it’s usually just trying to keep up with dishes, bottles, and laundry (which I do on a daily basis). I don’t exactly, okay this is embarrassing, but I don’t exactly clean clean. I just recently started making myself vacuum J’s room and sweep in the kitchen and eating area. But like, washing toilet bowls, scrubbing sinks and tubs, mopping (haha), dusting, these aren’t activities I can honestly say I engage in on any remotely sort of regular basis.

I like to say I didn’t get the cleaning gene. Because I can cook up a storm and bake you under the table. My mom is the opposite. She absolutely loathes cooking of any kind but is OCD about cleanliness in her home. I wish I could have both. I wish keeping organized and clean came naturally to me because I truly do enjoy a clean and tidy space.

If I was working, honestly, I’d pay someone to do it. Since we’ve been home from the hospital, my mom has come over a few times to do it. But I’m realizing that it’s a skill that can be learned and worked at. Cooking well didn’t always come naturally to me either. When we first got out of college I was mostly eating things that came out of jars or boxes (just add chicken!). If I asked the me of back then to whip up a lemony zucchini and ricotta lasagna (a recent dinner) or swirl together some chia seed pudding (new fav breakfast of DH’s), I would’ve been quite puzzled indeed.

I’ve been inspired first of all by just spring cleaning in general, and by the fact that Juni will soon be mobile which scares the crap out of me because eww our floors, and by the fact that I know a large part of my day to day unhappiness is caused by stress over how cluttered things are, and by Belle‘s recent series on cleaning. She’s my new hero. Please keep teaching us, teacher! (Also: I want this book!)

And honestly, I’m home all day and it’s kind of embarrassing. Belle talked about the sense of accomplishment in having a cleaning routine and I so admire that.  But one of my biggest problems is, you can’t clean while there’s clutter, but you can’t clear the clutter if there’s no organized place to put it. Most of our closets are overrun with stuff we don’t ever use. That needs to change. If everything has a place, I can put it there, and then I can come up with a cleaning routine that works for us and is (hopefully) manageable.

This is all part of me finally accepting that, for now at least, I’m a homemaker. So I should try to be a better one. I’m used to excelling in my career. And even though housework never ends, hey, neither does office work. Projects lead to more projects. There’s still plenty for me to take pride in around the house. I actually started this post a few weeks ago and have done A LOT since then. I’ll be back soon to update you all on my progress. I’m starting with organizing and then will get a good cleaning routine down.

Wish me luck on my journey!

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.

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.

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.

Maybe

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.