Author Archives: ThisGutsyLife

Reaching out

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After L was born, I struggled for a very long time. My anxiety was out of control, and although I was never diagnosed with anything thanks to an absolutely failed attempt at accessing mental health care (more on that soon), it’s become clear to me that I was experiencing symptoms of PTSD, which is common among NICU parents and people who have experienced medical trauma.

I’ve started to write about this a number of times. When I began blogging, my purpose was to be honest, and this is among the most raw of all, and maybe the most important part to bring into the light. But it feels so big, and I was nervous about making these particular cracks in the surface visible, and I struggled, over and over, to find the right words, and so it kept slipping away in silence.

Yesterday, though, the news about Anthony Bourdain hit me hard. And in the wake of yet another public personal tragedy, there has again been an outpouring of online support, with a unifying message of encouragement: reach out. But, from my perspective at least, it’s not so simple as that. And so my words may not be perfect, or complete, but I’m laying out at least this one part of my own soul.

It took me nearly a year after L was born to finally reach out. That’s not because I wasn’t aware I could use some support, or that what I was experiencing wasn’t normal or okay; it’s because I was exhausted, and beaten down, and struggling to keep up with even the most basic needs of our new medical life, which had flooded us with unfamiliar equipment and sterile procedures and home health nurses and therapy visits and countless unexpected hospital stays. This was a time when my stress and anxiety made even opening the mail too much to handle on many days; I would let our mail pile up for weeks because the bills and insurance denials I knew were likely lurking inside those innocent-looking envelopes made my heart race and my stomach fill with lead. Adding in another layer by dealing with my own mental health that came with new anxieties all its own was too much for me in the middle of all that, so I put it off, and put it off, and refused to look at it, and put it off some more.

Most of all, it took so long because I had to call. If that one simple fact were different, if I could have simply scheduled an appointment online, without having to muster up the courage to dial that number and spill my dark secrets aloud to a stranger over the phone, I would have gone in months earlier.

As L’s birthday approached and I realized how strongly the looming anniversary of that day was impacting me, and with a lot of encouragement from my 99, I finally did reach out. But my first and only experience with mental health care, which totaled exactly four appointments, was an utter disaster.

She skipped the intake questions entirely during our first appointment, instead listening to me tell my story while interjecting the kind of platitudes and canned responses I had grown to dread from anyone, let alone the person who was supposed to be fixing me (…“I can’t even imagine!”…“You’re so strong!”…) And when we finally did circle back to those big, important questions at my second visit, instead of simply asking them, she assumed – perhaps since I was a mother and was managing more for my child than she seemed to be able to fathom and still appeared to be a responsible, put-together adult – that I was navigating most things just fine.

“No alcohol abuse, right?” (No, not in the raging alcoholic sense, but my anxiety was bad enough that I had been self-medicating with wine in order to fall asleep at night. Because her question assumed otherwise, it made getting those words out that much harder, and so she never knew this.)

“And you’re not suicidal?” (I wasn’t – I want to be clear about that, for anyone who loves me who might be reading this – but what if I had been?)

She proceeded to spend the third visit guiding me through an absurd face-tapping exercise for which I’m still not clear on the science or purpose, and at my fourth visit pronounced me all better since we had just received good news about L’s prognosis (spoiler alert: that good news was short-lived, and did very little to improve my mental well-being).

After that we parted ways, and I, having mustered the courage to reach out and having had it fail so miserably, never mustered that courage again.

Knowing that my mental health was important didn’t matter. Knowing there were tools available and how to access them didn’t matter. When I was most in need of help, a simple phone number felt like an insurmountable obstacle rather than a resource. I wouldn’t want to quell the flood of messages encouraging people to seek support if it can save even one life, but it seems to me that putting the onus of reaching out onto those who are in the depths of a struggle for their lives may often be a burden too heavy to bear.

Since then, I do feel like I have healed tremendously. Time has helped, and L’s improved health has helped. But most of all, my incredible support system has helped, and hearing the stories of others and knowing my experience was common and human rather than weak and shameful has helped more than I can say. Those last two are the sole reasons I finally did find the courage to call at all, and they have helped me make it through some of my darkest times. Please keep the conversation going;

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‘Just the way you are’

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Five years ago today I read L his very first bedtime story. Here we are:

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Ahhh, the glow of new motherhood. At the time this picture was taken, L was almost exactly 24 hours old and had already had his first major surgery. I was sitting on a padsicle, wearing gigantor mesh underpants and whatever random clean clothes a family member had grabbed to bring us to change into (as it happened, those random clean clothes were matching red gym shorts and gray t-shirts for both me and Z – adorbs!). And I had been crying for the better part of 24 hours, as you might possibly be able to tell by the swollen red horror show that is my face.

24 hours in, we were trying to wrap our heads around what was happening to us and clinging to any semblance of normalcy we could find. L had arrived suddenly, six weeks early, with a birth defect we had not known about previously, and had been whisked off to surgery where it was discovered he had lost most of his small intestine and would need another surgery eight weeks later. At this point he was still sedated and intubated, and I was overwhelmed with a new diagnosis and was being bombarded with unfamiliar medical terms and wasn’t sure if L would ever be able to eat anything ever and didn’t know what his future held, and was trying not to face the unspoken if he had any future at all part of that statement.

And so to cope, in the midst of all these things that were not okay, we had gathered some children’s books, and we were reading L his bedtime story.

I will be honest: I’m pretty sure Z picked Corduroy. I don’t think I even really remembered the story at the time, and I can’t imagine I would have chosen it over several others I was more familiar with. But I was physically and emotionally spent and didn’t have the strength to make a decision, and so Z chose a book, and I read.

I have struggled to explain the extent to which L and his diagnosis are completely separate things for me. I love L more fiercely and fully than I ever knew was possible, and at the same time I so desperately wanted to wake up from the medical nightmare of those first weeks and months that stretched into years. I have wanted out a thousand times over; but that is directed entirely at the diagnosis, the medical struggles and all the suffocating stressors that come with them – which are physically part of L, but for me have never been part of who he is. From the moment he arrived, even when I was slow to bond because of the shock and trauma of those first days, I never once thought of L as anything but my sweet, perfect child. Misfortune had happened to all of us, L included, and it was that misfortune that I railed against, not L, because he was not the misfortune — but how could anyone understand that distinction if they hadn’t experienced it? I have struggled myself to understand how it’s possible to be 100 percent full of each of two emotions that are so strongly at odds with each other you think they might rip you apart from the inside out. How could I possibly put that into words that anyone would understand?

And yet here, on these pages, it is explained perfectly in the simplest of terms:

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In retrospect, it’s hard not to note the parallels; the innocent baby who had no idea there was anything less than perfect about his little body; the arduous journey we took before we were able to come home at last; even right down to sewing on a new (Mic-Key) button. Looking at the first pictures of us in L’s room, I can’t help but project Corduroy’s surprise and delight at seeing his new home.

But perhaps most fitting of all was the hand-written note in this particular copy of Corduroy, penned before L even had a name yet, and well before we knew anything was out of the ordinary with this pregnancy. I’m sure I had read and appreciated the inscription when we received this copy of the book, but had not really thought all that much about it, if I’m being perfectly truthful. It’s the kind of sage wisdom that seems like common sense until you are faced with a situation in which common sense is out the window — and then it becomes the thing you most need to hear in all the world.

There, in a dim room in the NICU, in the middle of all the tubes and beeps and pain and fear, when I didn’t know what the future would hold or how I could possibly face it, were these words:

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On the anniversary of our 5 years together, L, I am so proud of the kind, compassionate, intelligent, brave person you are becoming. May you grow to climb mountains and explore vast palaces; and no matter how far you roam, may you always come home to a little bed just the right size for you, and friends who love you just the way you are.

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Breast milk donation: A spill-all overview of why, where, and how

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33EA979D-9BA3-4DBE-A82E-49EA4C550B79When L was born very suddenly, six weeks early and with a previously undetected birth defect, I felt like my body had betrayed me. It had not been able to make my baby healthy, and it had not been able to keep him inside as long as it should have; my body had failed him. On top of that, it had spent months hiding a birth defect that should have been picked up on ultrasounds but wasn’t, and so my body had left me completely unprepared for the journey it had suddenly thrust us into.

Due to L’s surgeries and GI needs, I was not able to hold him in his first days, and I was not able to feed him at all for the first week. I felt helpless. There was nothing I could do to heal my baby, and all of the normal things you’re supposed to do to take care of a newborn had been taken away from me.

The one thing I could do was pump. And so I pumped, and pumped, and pumped.

In the middle of all that helplessness, this was one thing my body was good at. I was very fortunate in that regard. And I clung to it. I pumped before I knew what L’s diagnosis really was. I pumped before I knew whether he’d ever be able to eat anything, ever. And at the first signs of him being able to take even the tiniest 5ml bottles of milk, I pumped harder.

At my peak I was pumping upwards of 60 ounces of breast milk each day. But for the first several months of his life, L was taking less than one ounce total each day, and he didn’t approach anything near full feeds until he was approaching his first birthday.

That made for a lot of excess milk.

The NICU lactation consultants encouraged me to donate my extra milk. At first I was reluctant to part with any of it – what if he needed it?! But as we quickly filled a whole freezer in the NICU, then our entire deep freeze at home, and then our refrigerator freezer as well, and the milk just kept coming, it became clear that I needed to share the wealth.

Donating soon became a way for me to give back, to help other families in similar situations, and to make all of those hours of pumping have a purpose when it became clear that L wasn’t going to be able to use even close to all of it himself.

When I first began donating, I was unfamiliar with the process and had no idea how to differentiate between all the different milk banks. I’ve since donated more than 2,300 ounces and counting across two children – that’s nearly 18 gallons! – and I imagine other moms new to this whole thing may have similar questions, so I’m sharing what I’ve learned.

There are basically two types of milk banks: nonprofit and for-profit.

There are a lot of banks out there these days, but basically all of the legitimate, nonprofit banks in the U.S. are part of the Human Milk Banking Association of North America (HMBANA).

Others, like the Helping Hands Milk Bank, process milk for for-profit companies like Prolacta, who use the donated milk to manufacture high-profit human milk-based nutritional products (i.e. supplements that may be used to fortify milk given to preemies, so your milk is still going to those who need it – but at a high price). I will admit that I did send my initial donation to the Helping Hands Milk Bank, because I was not really familiar with the for-profit/nonprofit milk bank landscape at the time, and they offer a $300 breast pump reimbursement through Prolacta for anyone who qualifies and donates at least 300 ounces. So I can confirm that this particular reimbursement program is at least legitimate, and the reimbursement came as a welcome relief after my insurance company managed to weasel their way out of paying for my first pump. But personally, I would not continue donating to this type of milk bank rather than a nonprofit bank.

There’s also the Mother’s Milk Cooperative, which I’m not even going to bother linking out to. It’s of the for-profit variety, it lures people in with the option of getting paid for your milk but seems suspect in terms of actually paying out, and it has a pretty hazy reputation among online mommy groups (not to mention the fact that when I inquired there about approved supplements, a representative from the MMC replied, “While the supplements you are taking may be perfectly fine for your healthy infant, the milk we collect goes to very sick and premature infants and we must adhere to the strictest safety standards.” Which, as you can imagine, didn’t sit too well with me since I had so much milk to donate precisely because my infant had been both sick and premature.)

In any case, I currently donate through The Milk Bank in Indianapolis, which is a member of HMBANA. The Milk Bank offers “Milk Depots” for easy drop-off of milk donations in St. Louis and in Hannibal, Mo., as well as in multiple locations throughout Indiana, Illinois and Kentucky.

It’s not hard to donate, if you have milk to spare.

There’s a screening process, involving:

  • An intake questionnaire
  • A form to be signed by your doctor
  • A form to be signed by your baby’s pediatrician
  • Basic bloodwork to make sure you’re a healthy donor
  • Super quick check-ins (we’re talking a 30-second email) every couple of months to see if your medications or anything else have changed.

After the screening process has been completed – and it may take a few weeks to process everything – you can simply load your milk in a cooler and drop it off at one of the depots. Alternately, they will provide coolers and a shipping label to ship your breast milk to them, if you prefer. Most banks ask for a minimum donation of 100 ounces, to justify the expense of intake processing for a new donor.

There are quite a few benefits to donating

  • You’re helping some of the tiniest and sickest babies survive and thrive.

I’ll pause here to reiterate my caution against carelessly throwing around the phrase “Breast is best!” without regard for the very complex emotions attached to all the many reasons a mother may be unable to or choose not to breastfeed. But it’s true that for preemies, breast milk does help give them the best chance at survival and at long-term health, and in many cases, preemie moms cannot induce lactation or produce sufficient milk for their baby’s needs. If you have a big supply, you can help.

Other benefits of donating include:

  • Giving back can be cathartic, especially for mothers who have experienced a traumatic birth, medical complications, or loss.
  • Many milk banks will provide supplies, including milk storage bottles, bags, and coolers, so you don’t have to cover that expense out of your own pocket.
  • You put a ton of energy into pumping, and donating your excess makes sure all that work was worth it.
  • It can be a way to teach your kids about sharing. G is still too young to understand, but L goes with me to drop off every time and he understands that we’re giving milk to help babies who are sick like he was.
  • You get your freezer space back. Remember how nice it used to be to buy in bulk?
  • Hey, you’re burning extra calories pumping all that milk! That means you get to eat more chocolate while helping babies. Everybody wins.

There are a lot of milk banks and donor programs out there, so it’s a good idea to do your research if there’s a bank you’re interested in donating through that’s not part of HMBANA. You can click here to see a full list of HMBANA locations, or learn more about human milk banking here.

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Happy Teacher/Nurse Appreciation Week!

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This week is Nurses’ Week. It’s also Hospital Week, or, if you work at my office, Health Care Week, because we want to be inclusive of our friends in ambulatory and post-acute. And at L and G’s daycare and preschool, it’s Teacher/Nurse Appreciation Week. They celebrate this particular combo observance because they attend a school founded by a pediatric nurse that includes a room for children with all sorts of medical complexities, staffed by nurses; it’s only fair to celebrate both teachers and nurses in the same week, since at this school those roles overlap to such an extent.

It strikes me, as we prepare our cards and treats for Teacher/Nurse Appreciation Week, what a fitting observance this really is.

In the first days and weeks, as we began to wrap our heads around new diagnoses and devices and tests results, it was our nurses who gently helped us expand our vocabulary and patiently repeated and explained again and again until we began to enter conversations with confidence.

Nurses taught us to navigate the basics of parenting in a setting that seemed so hostile to normalcy. It was a nurse who helped me learn how to hold my child, who seemed so fragile at the time I was afraid I would break him. It was a nurse who helped me learn how to change a diaper around tubes and leads and a surgical incision and an ostomy bag, and who taught me how to change the ostomy bag as well, and, later, how to change a sterile dressing, all of which became routine baby care for our family.

Nurses, too, taught us how to fiercely preserve our normalcy despite a setting that seemed so hostile to it. It was a nurse who fought for permission to take our son for walks in the courtyard, and took the time to play photographer in an impromptu family photo shoot while we were outside. It was a nurse who encouraged us to bring in a playmat and a swing, and to establish a bedtime routine before we had even left the NICU, and stepped in to read L his bedtime story when severe storms prevented us from coming to the hospital one night.  

Those same nurses taught us how to transition home, and continued to offer listening ears and guidance off the clock as we learned to navigate difficult medical relationships and how to advocate for our child.

As parents of a child with a long medical history, we are deeply indebted for the incredible healthcare we have received from a countless string of nurses; L would not be here without them. But alongside that, every step of the way and especially in those early weeks and months, we are equally indebted to our nurses for the role they have played as our teachers. We are grateful, this week and every week, to the nurses who have equipped us with the skills and confidence to become the parents L needed.

What have you learned from nurses? Leave a comment below to share how they’ve made a difference in your life!

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PatchMD: An honest review

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Nutrition is difficult when you’re not working with a complete gut. My son, L, has short bowel syndrome as a result of a congenital condition called gastroschisis; his intestinal motility has regulated quite a bit, and that has helped tremendously with his calorie absorption and hydration, which is why we have been able to wean him off of TPN and remove his g-tube over the last year and a half — but vitamins are a different story. He has always had difficulty maintaining his vitamin levels, even when he was getting a vitamin cocktail straight to his veins every night, and without TPN his vitamin deficiencies remain our biggest everyday struggle.

L particularly struggles with absorption of water-soluble vitamins (A, D, E, and K). Our gastroenterologist has actually called him “her most difficult kid” when it comes to vitamin D. Apparently in a typical gut, certain vitamins and nutrients are best absorbed by certain sections of the small intestine; since L’s small bowel didn’t form properly we don’t actually know exactly which sections he has, but since he only has about 20 percent of what he should have and almost all of that has been surgically repaired at this point, L probably just doesn’t have the sections that are best at absorbing these vitamins.

We’ve tried a range of supplement options, ranging from Flintstone chewables (which his labs laughed at) to double doses twice daily of pediatric AquaDEKs, which is a bright orange liquid multivitamin containing the water soluble vitamins A, D, E, and K (let’s pause to appreciate the clever name they came up with for that one!). AquaDEKS is actually designed for kids with cystic fibrosis, who also typically struggle with malabsorption.

The normal range for vitamin D is 20-100. AquaDEKs helped maintain L’s levels when he was receiving TPN, but after stopping TPN and having his central line removed L had never been out of the high teens. GI and our nutritionist did some research and decided to do a trial run of patch vitamins from PatchMD, which they had not tried before with any of their pediatric patients. Since L’s absorption issues lie in his gut, the hope was that patch vitamins, which absorb directly into the bloodstream through the skin, would allow us to bypass that difficulty altogether.

Here’s how it went for L, who was 4 years old at the time:

Effectiveness: We did see a bump up in his numbers within the very first month — although, as is often the case, this test run wasn’t isolated to a single variable. He had successfully learned to swallow pills just the month before, so the initial boost may have actually been a result of the prior month of swallowing his 50K iu vitamin D pills (we had previously been poking holes in them and trying to squeeze their innards into his g-tube, and hoping he got most of it).

With the help of both the Vitamin D3 patch and the adult multivitamin patch, L maintained vitamin D levels in the low 20s and then mid-20s through the summer, putting us in the normal range for the first time ever! I initially thought PatchMD was a huge success for us.

However, this number began to trend down month after month and dipped down near 20 again as the weather turned cold and L was getting less sunshine. Because L had miraculously started swallowing pills like a pro just before his 4th birthday, we ultimately discontinued patch vitamins and went back to an oral multivitamin (we’re currently using DEKAs, which is essentially the capsule version of AquaDEKSs), along with an oral iron supplement and the 50K iu vitamin D — and his vitamin D levels have skyrocketed, hitting 36 and then 45!

So it seems that, for us, patch vitamins are more effective than liquid vitamin supplements, but nothing beats the regular old pill.

Ease of use: So simple. Slap the patches on his back at bedtime and they’ve run their course by morning. We rarely had them come off before morning, and a few times we forgot to remove them and they stayed on all day, even through sweaty outdoor play and weekly “splash day” at preschool. And they are easily removed — L is still a bit traumatized by having tape on his skin after all the sterile dressing changes he’s been through, but it didn’t take long for him to get comfortable with us pulling these off of him.

Pricing: Around $20/month per type of patch before discounts – and they always have coupon codes for 30% or 40% off (the amount varies depending on whether you’re willing to subscribe to a recurring order – which I eventually did, and it was easy to cancel, but you do have to cancel several days before your order is set to ship). We didn’t even try to run it through insurance since these are OTC. Vitamins aren’t cheap, but these were at least a lot more cost-effective than quadruple daily doses of pediatric Aquadeks, which were running us around $30 every two weeks.

Shipping times: Excellent. At its most impressive, I received a shipment notice a whopping 14 minutes after I placed my order! That was probably an anomaly, but the patches always shipped within 36 hours of placing my order, and we received them within 4-5 days at the most — even the time I placed an order at the beginning of a holiday weekend.

Customer service: Meh. I didn’t have a lot of need to interact with customer service, because everything went smoothly with all my orders. The only time I did reach out to them was during a special promotion that wasn’t properly applying to my order — and I didn’t receive a reply.

VERDICT: Proceed with caution.

PatchMD vitamins are very convenient and they did seem to work better for us than some of the liquid supplements we’d tried. If nothing else is working — or if you’re just looking for a hangover cure or a boost for your complexion, both of which the company offers — full steam ahead, it’s worth a try. But if you have any kind of chronic deficiency you’ll want to keep a close watch with regular bloodwork. (Although, if you have any kind of chronic deficiency and don’t monitor it with regular labs, you might want to seek out a new doctor.)

Disclaimers: I did not receive any products or perks in exchange for this review; I simply wanted to offer up our experience, since I didn’t find any reviews from short gut parents when we started patch vitamins. And, I am not a medical professional. I’m a mom. For medical advice, talk to your physician or provider.

Have you tried patch vitamins? What supplements have worked for you? We’re still struggling with iron levels, so I’d love to hear your suggestions!

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The Last March of the Enteral Green Beans

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From 2014 to 2016, our house was swimming in green beans.

If you’ve ever had the pleasure of experiencing Stage 1 green bean puree, you will know that this wholesome, nutritious goop is one of the foulest of all the baby foods. However, it is also incredibly low in sugar and has the miraculous property of thickening loose poop — so we had the good fortune of getting intimately acquainted with the stinky green sludge far beyond L’s baby years. By the time he was 3, we were buying Stage 1 green beans by the case and putting nearly a whole jar through his g-tube every morning and every night. (See teeny tiny toddler L “I do it myself”-ing that syringe of green gunk down there?!)

37B8EB67-61CA-4376-BE8F-688608014194I will admit that I have never actually tasted them on their own (although I did once accidentally taste a green bean-avocado-vanilla pediasure g-tube smoothie — would not recommend). So please accept my apologies for railing on your product, Beechnut; I’m sure it is utterly ::gag:: delightful, and it was a key ingredient in our ongoing struggle to get L’s gut on track enough to keep us out of the hospital and slowly wean down his TPN. For that, I thank you profusely; without it, he would have dehydrated himself even more quickly.

We never had to resume our green bean regimen after L’s last big surgery, almost exactly a year and a half ago now. But we’ve had a couple of straggling jars of green beans hiding in the back of our pantry since then — and I found them this week, just ahead of their expiration date, and just after G started exploring solids.

When I popped open the jar, the smell instantly took me back to a much different time in our lives. This was the smell of a desperate attempt to manage a battle we couldn’t win. We’ll never completely be in the clear, and I still get anxious with every bellyache; but spooning the green goop onto G’s tray, watching L chomp his whole green beans and laugh while G finger painted in hers and smeared them across her face, was an incredible reminder of exactly how far we’ve come in the last 18 months.

I’m hoping to get back to blogging more regularly very soon. Until then, I leave you with the last march of the enteral green beans:

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My most important resolution for 2018

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Two weeks ago I went to see The Last Jedi.

This was significant for a couple of reasons. First, omg new Star Wars! I may or may not have actually teared up the first time I saw Rey and Finn board the Millennium Falcon in The Force Awakens. It was like seeing a part of my childhood come to life. (Even though it was a set on a movie screen. I know that doesn’t really make sense. Judge me you must not.)

The truly significant thing about this moviegoing experience, however, was that it was the first time I had ever gone to a movie by myself. I left my four-year-old and my two-month-old at home with my very capable husband, stashed a cold brew in my purse, and went to a 9am show on a Saturday morning. I didn’t have to bring a diaper bag or 12 extra snacks. I didn’t dress for nursing access. I peed by myself. I ate my breakfast popcorn one kernel at a time like I used to do ages ago before I was sharing it with somebody. I felt free.

And the whole time I was there I felt like I was getting away with something. I was away from the house for a mere three hours, my kids were well taken care of, I had made sure my family had everything they needed before I left the house, and my husband had gone to see it by himself the day before so I wasn’t even being selfish. Tickets to the 9am show cost $5 so it hardly blew our budget. My smuggled coffee was the only really questionable part of my outing. I knew it was fine to be there alone. But it still felt like I was pretending to be somebody else for a morning; like this level of freedom and indulgence was somehow not allowed in my life.

The same feelings bubbled up this past Sunday, unexpectedly, at home. Z and I were both in the kitchen together, at the same time, with all four of our hands free, making breakfast and brewing good coffee in my brand new Chemex and chatting about our plans for the day, when suddenly I felt a stab of guilt. I could see both kids, just a few feet away. L was engrossed in a kids’ show (and an educational one, to boot) and G was waving her arms and kicking and cooing happily on her play mat. And instead of pondering this wondrous miracle that was both kids content, at the same time, without any parental assistance at all, I found myself inexplicably wondering if I was being a bad mom for taking time to make slow coffee instead of snuggling my babies.

I imagine this sense that I shouldn’t be enjoying myself just for me has been exacerbated by our medical struggles, which for us coincide exactly with becoming parents. For a long time, L was hard to take out in public and could only be left in the care of an IV-certified nurse, so we didn’t do anything. In between appointments and therapies and frequent hospital readmissions, we stayed at home where we had extensive medical duties and often oppressive worries on top of all the regular stress of parenting. There were many days when we literally could not spare a moment for ourselves. His health required constant management, and we rarely got breaks.

We tried, we really did. When you are a long-term NICU parent, people are quick to remind you to take care of yourself, too, and we knew we would be long-termers from day one. We even took a day in the middle of his 4.5-month NICU stay, when he was completely stable and simply awaiting another surgery, to go swim in the lake so that we could, momentarily, feel normal. But we didn’t tell anybody we did that. I didn’t tell anybody that most nights, during those stable NICU weeks, I went home and slept like a rock. Because the expectation is that it will be immeasurably hard, that it will be the most miserable stretch of your life (rightly so, in many cases); and if I could swim, if I could sleep, maybe I wasn’t properly worried, properly miserable, properly parenting my son. People encouraged us to take care of ourselves, and we did so, but never without guilt.

I think this was amplified by our medical journey, but I also know that this mindset is not unique to parents of medically fragile children. It’s so easy to get weighed down by the responsibilities of parenthood, to feel consumed by the needs of these tiny humans who depend on you so utterly, and to feel guilty about doing anything that mommy-guilt will translate into selfishness. It can feel impossible to scrape together 30 minutes for a workout when your clingy toddler wants to play and cuddle every second of every day, or to spend an evening reconnecting with your spouse over a dinner date when you’ve already spent all day away from the kids at work. There are only so many hours in a day, and parenting takes all of them.

My New Year’s resolutions for 2018 include the usual suspects: making healthy choices on the diet and exercise fronts, reading more, having regular date nights, being more present when I’m with my kids, paying off that last student loan ahead of schedule. I have resolved most of these things before, and in many cases I’ve failed. But this year I’m adding one more resolution into the mix, which I think may be the key to success for nearly everything else: shedding the guilt.

This year, I will take time for myself when I need it. I will take advantage of my support system. I will occasionally do things because I want to. I will allow myself to enjoy things that are not centered solely around my children. I will know that it’s okay if I don’t get everything done all in one day, but also that I’m often capable of more than I think. I will remind myself that things are not always hard just because they have sometimes been hard. I will make time to work out and read grown-up books and have date nights, and not feel like I am stealing that time from my kids. And we will all be better off because of it.

And when I falter, as I inevitably will, I will reread these words and renew my resolve, because I don’t have to do it perfectly for it to count.

Whatever your resolutions are for 2018, take the time to make it happen without guilt. I know exactly how hard it can be to make space in a busy life, but it really is okay to take some time for yourself. You need time for yourself, even if the most you can eke out in a harried day is a few seconds of deep breathing to recenter before you dive back in. The people you care about most will be better off if you are your best you, so do it for them if you need some help over that mommy-guilt hump — but if you can, simply do it for you.

You’re worth it.

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Teacher Gifts: Avoiding Sugar Overload

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The first year L was in daycare, we had a rough start to December that meant lots of holiday preparation ended up delayed, and then we were out of town the weekend before Christmas, spent all of Monday in the ER with a stubbornly clotted off central line, I had a crucial job interview on Tuesday followed by dinner guests (for whom we had had a lovely menu planned but instead ended up ordering pizza), and on Wednesday, just two days before Christmas and the last day of school before winter break, we went back to the OR to have a new line placed. We very nearly didn’t even have a Christmas tree that year, let alone finding time to purchase supplies for, make, and package up gifts for several teachers in the midst of all that. So the teacher gifts that I had intended to deliver pre-holiday break turned into New Year’s gifts instead, the homemade Christmas candy I had planned to include was more than two weeks old, and I decided to toss the stale chocolate and whip up some healthy treats.

“They’ll love it!” I thought to myself around 5 pm as I planned out a treat bag of pumpkin chia banana bread, all-natural energy bites, and homemade zucchini chips. After all, everyone is burnt out on sugar by the time January rolls around, and the last thing most of us need is another bag of sweets to immediately throw our resolutions off track.

By 9 pm I realized that zucchini chips take a heck of a lot longer to make than I had thought. Around 11 pm I became aware that we had no food-appropriate bags in the house, and just after midnight I finished assembling what I hoped everyone would perceive as carefully-planned hand-folded envelopes made of waxed paper (you poorly-prepared procrastinator crafty over-achiever, you!). At 7 am we realized zucchini chips are actually kind of weird the next day, and around 7:30 am Z made an emergency Starbucks run for a handful of gift cards as a sort of apology to stick in with a set of healthful edible gifts that I imagine mostly wound up in the trash.

Last year I was determined to do better. There are lots of ideas floating around out there on the interwebs; this list put together by a teacher has some great ideas, and there are always homemade go-tos like hot chocolate in a jar or this adorable snow day survival kit. But those are all peppered with sugar; and since I wanted to make sure L was included in putting together gifts for his teachers this time around, and because we have to carefully limit L’s sugar intake, I was once again tasked with finding a non-sugary gift. I also wanted to find something that would be appropriate for 3-year-old hands to help with, but that would actually look nice and ideally have some kind of usefulness. The thought certainly counts a great deal, but as the child of two teachers, I am well aware how appreciated it is to receive a gift that’s not just another addition to the box(es) of things you feel obligated to not throw away.

So I spent some time browsing and thinking, and came up with a list of non-sugary, homemade or some-assembly-required, preschooler-appropriate, likely-to-be-appreciated gifts. And since that criteria seems like it might not be so very specific to our family, I thought I’d share a few of my favorite ideas:

A bundle of stovetop potpourri ingredients. Easy peasy for small hands to drop in a pretty bag, and it makes the whole house smell sooooo good (don’t forget to keep enough to make some for yourself!). Pair it with homemade Winter Warmers if you’re really feeling crafty.christmas-simmering-stove-top-potpourriPhoto credit: Mommypotamus

Homemade candles, sugar scrubs, or whipped body butter. Ok, so there’s some sugar in this one – but it’s not for eating! Alternately, you could easily buy these things and have your kiddo help you package them up in a pretty little mini-spa bundle. 

coffee coziesA handmade coffee cozy paired with coffee beans, a gift card to a coffee shop, or an edible treat if you’re not trying to avoid sugar. A seasoned teacher likely already has plenty of mugs, so give them a coffee-centric gift that won’t add to that collection! I’m whipping out a few of these crocheted cozies (pictured at right) this year because I can make them pretty quickly while holding a sleeping baby, but there’s also a no-sew version that may be a little easier to get the kids involved in.

Savory edible treats. If you love gifting homemade edibles but want to cut the sugar a bit, here’s a list of ideas that are not zucchini chips.

Handmade ornaments. This is a tricky one. It can be hard for a 3- or 4-year-old to make something that looks nice (sorry, L’s art box!), and the teacher’s suggestions linked above actually lists ornaments as something to avoid. But my teacher mother suggested this as one of her favorite kinds of gifts, because she put up a small tree in her classroom each year and could continue honoring her students gifts in that way each year without having to actually bring them home. So this might be one to tread carefully on, and may vary based on how your child’s school approaches holiday decor. If it sounds like an idea you’re interested in, you might check out these button ornaments (pictured below), which we’re planning to try our hands at on Christmas Eve this year.

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Donate to a community organization that supports children. Donating on someone’s behalf can be a bit risky when it comes to gift-giving, but a teacher is almost sure to love a gift in his or her honor to a non-profit that supports local schools or promotes school readiness. To get the kids involved, have them make a card or draw a picture explaining the donation – and this will give them a chance to better understand charitable giving as well.

Or, you know, you can always pick up a few Starbucks cards. I have it on good authority that teachers love coffee, and also that it takes quite a bit of caffeine to keep up with my little monster!

What are your go-to teacher gifts? Teachers, what are your favorite things to receive?  Leave a comment below to help me add to this list!

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And then there were four

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I had thought that I would do a lot of blogging on my maternity leave, but G will be 8 weeks old on Saturday and here I am just now getting around to writing something new.

Part of that is a symptom of simply learning to manage life with two children, especially during the flurry of the holiday season; we are doing well, and L is an amazing big brother and really is adjusting beautifully, but our days are full, our hands are full, and we are exhausted. Instead of blogging, I have been chugging coffee, doing an endless stream of laundry, supermomming out on our daily advent activities, and mitigating that by accidentally washing the baby’s hair with dish soap, getting chocolate stains on her onesies, and literally falling asleep while reading aloud to L in the mid-afternoon.

But the other part of it is that I think I’m not exactly sure what to say. By the time I started blogging about our experience with L, we were nearly three years removed from the start of our journey. I had had weeks and months and years to process what we have experienced; countless hours spent pumping or sitting around a hospital room or holding a sleeping child to think through how I felt about it and what I had to say about it. But having a healthy baby after having a sick one is a brand new experience, and I’m not sure I can offer any profound takeaways just yet.

Much of this is strange and new; since L was 4.5 months old before he left the hospital, we have never really taken care of a newborn before. G has been an incredibly easy baby so far, aside from being an extraordinarily accomplished spitter-upper (we are no strangers to vomiting, but I had NO idea that this kind of volume could come from a healthy baby!), and I am slowly getting used to the fact that it really can be this easy.

I wasn’t sure how I would react to having a second child after L, but most of our days are ordinary, without time to stop and think and reflect on each small thing as it happens. I do think in some ways the weight of all we lost with L, of all the things we didn’t get to experience with him, has taken on new significance, because before I only knew what I imagined life with a newborn should have been like, but now I actually know, and in some ways that makes it painful all over again.

But the Big Feelings tend to lurk below the surface, fragmented, and popping up raw and overwhelming only occasionally. The first time I saw Z lift G from the warmer where she had been taken for a boost of oxygen just moments after birth, the total absence of tubes and wires was physically jarring to me in a way that’s hard to describe; and I did not sleep a wink that night as I tried to wrap my head around how you’re supposed to know your baby is still alive without the constant soft beep of monitors reassuring you that her heart is beating, that she is in fact still breathing. It seemed almost irresponsible to leave her tiny, brand new body lying there so unattached to anything that could register the first sign of a problem. Even now, nearly 2 months later, I am still occasionally surprised to not feel a G-tube under her sleeper, and I still can’t shake a sudden jolt of panic as I remind myself again that it’s really, actually fine to get her chest wet at bathtime.

I had expected some anxiety, but it has manifested in ways I did not expect. For example, for so long when L was a baby his poops were SO frequent and SO loose and made his skin SO raw, and were such an ever-present reminder that his gut wasn’t functioning the way it should, and also I guess I didn’t realize how frequently a healthy newborn would poop, so for the first several days I had an unexpected moment of dismay every time I realized G was pooping again. In the same vein, she seems to be healthy and gaining and growing beautifully, but I still cannot see the really quite impressive volume of spit-up that spews forth on a regular basis without feeling compelled to find a way to fix this problem, because so much of L’s babyhood was spent cleaning up vomit, evaluating all the variables and trying to fix it. And – and this one is not exactly new or unexpected, as it’s kind of been my operating mode for awhile now – the better things go for us, the more I imagine some heinous thing lurking just around the corner, and the more fearful I am that we will pay for this streak of good luck with something truly horrendous just over the horizon.

On the whole though, I can say this: I was not okay when Luke was born, and I was not okay for a very long time after that, but I have healed a great deal mentally and emotionally since then. I would not have taken on a second pregnancy without truly believing that I was in a much better place, because I know the extent to which many women struggle in the first few weeks and months postpartum even with healthy babies; but the last eight weeks have in many ways been healing for me, and for us as a family, more so than I had even dared to hope.

I find myself still yet trying to wrap this up with a neat and tidy takeaway, so I’m going to stop now, because our story as a family of four is just beginning to unfold, and leave you simply with a picture of my heart:

View More: http://jamieschuesslerphotography.pass.us/newborn-thompson

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