Lost: Two Teeth

1AB790AA-4707-4BB4-AC42-F0FC633AC63CL has been working on a pair of wiggly teeth for months. They’ve been getting looser and looser, but they’d been hanging in for so long that I was starting to wonder if they’d ever actually come out — so when we sat down to lunch after a morning of adventures in the Science Center, I was shocked to see a gaping hole where his bottom right front tooth used to be.

“But I didn’t chomp anything crunchy, Mama!” he said, after shrieking with joy and surprise at the discovery of this new milestone.

I’m not totally convinced he doesn’t have a tooth working its way through his belly as we speak, but he was certain he didn’t swallow it, and more than a little concerned that the Tooth Fairy wouldn’t come visit him if he didn’t actually have a tooth to offer. So we made our way to the front desk of the Science Center, explained the situation to an incredibly nice member of their staff, and left my name and phone number on a pink post-it with “Lost tooth” noted in big letters.

I’m hoping she picked up on my “we don’t actually want this back” vibe. I will be incredibly creeped out if they call and say they found it, and can we come pick it up please.

In any case, L was consoled by this and made sure to write a letter to the Tooth Fairy to let her know that if she wanted to find his very first lost tooth, she’d have to visit the Science Center instead of his bedroom. And then he proceeded to lose another tooth that was threatening to topple over without the support of its neighbor – with a little help from Z this time.

In the morning, L was delighted and surprised to find this note outside his door attached to a mini Lego set, along with a couple bucks in the pocket of his Tooth Fairy pillow:

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You might want to check your security cameras, Science Center. I think you may have had an after-hours visitor!

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Breast pumps suck. Getting your insurance to pay for one doesn’t have to.

DEF5382C-2FB8-4F7F-A285-D877861FD322.jpegUnder the Affordable Care Act, health plans are required to cover breastfeeding support & supplies. But when I was pregnant with L, I was a little unclear on the process required to get a breast pump covered by insurance. So I called the number on my insurance card to find out what I should do; I got a prescription from my OB/GYN and then called the insurance company again when the information I was receiving elsewhere didn’t seem to align with what the insurance rep had told me; I talked to a pharmacist and whoever answered the phone at some sort of home health supply store, with more conflicting results; I called my insurance company two more times to confirm that I was doing it correctly; and I called yet again after I submitted my reimbursement request to confirm that I had done it correctly.  

And then I got a denial letter in the mail.

When I called our insurance company to object to this denial, they conveniently had no record of any of my calls. So I ate the cost of that $300 breast pump, because by that time L had been born and I was up to my ears in other, more pressing worries. When a nurse at my OB’s office found out what had happened, she connected me with someone in her office who submitted the paperwork for me to get a second pump free through insurance, so they would at least have to cover one for me even though I had paid out of pocket for the first, and I did receive a pump free of charge that I was able to keep on hand as a backup — but I had no choice in the type of pump, and received an model which shall remain unnamed that I like to call the “Purely Sucks,” which I used for exactly one day out of desperation when I had left my preferred pump somewhere and hadn’t been able to retrieve it yet, but which I’m pretty sure would have led to a failed attempt at exclusively pumping had I had to use the insurance-provided pump from the start.

So when I began looking into obtaining a new breast pump during my second pregnancy, I was determined. I was all set to arm myself with information and spend weeks fighting my insurance company to the death to get the proper coverage for the pump I needed. They would not win this round!

And then I discovered the Target Breast Pump Program, and within minutes, my pump request was in the works and I could save my resolve for the next insurance battle that was sure to come my way.

When I called, I spent maybe 10 minutes on hold and another 2 minutes speaking with a representative who took my information and got things rolling. Afterward, I faxed them the prescription my OB had provided, and a few days later, I received an email outlining my options, with images of the pumps and links to product pages to help me decide. I replied with my selection, and my pump was ready for store pickup two days later. Easy peasy nipple squeezy.   

Don’t pay for your pump out of pocket. Don’t waste time getting the runaround from your insurance company. Have Target do it for you!  Click here for more information about the program.

Disclaimer: All opinions are my own, and I have not been reimbursed for this post –  I just take great satisfaction in making health insurance companies pay up and pay out!

The Enormity of Normalcy

About a month after L came home from the NICU, I took him to the grocery store for the first time. I was still very anxious about taking him anywhere in public, given our heightened awareness of germs coupled with his tendency to make alarmingly large messes of one type of bodily fluid or another, but we needed groceries, and I needed to feel like a competent mother who could at least handle taking her child to the grocery store, for pete’s sake. So I packed up all our many supplies, and timed it just right, and loaded us up in the car and set off.

I had heard friends talk about random strangers approaching them in public places to fawn over their baby and pinch chubby cheeks, so I braced myself for the onslaught as I walked through the doors with my adorable little granny-magnet. I was fully prepared to slap an old lady’s hands if she got too close; it was flu season, after all, and that sweet old lady’s germs could be devastating for L.

But nothing happened.

When we walked through the doors, no one noticed. As I pushed our cart through the produce section, not a single shopper looked our way. L wasn’t hooked up to his TPN backpack and he wasn’t currently spewing any fluids from either end, so we had no reason to draw curiousity or disgust or alarm, and he was approaching six months old — not tiny enough, anymore, to be irresistible. He looked like any other baby in the supermarket with his mom, strolling down the banana aisle on the way to the salad greens.

I found a strange urge to scream unexpectedly welling up inside me. I wanted to throw my head back and yell, “DON’T YOU KNOW HOW HARD THIS WAS?”

Not just physically getting to the store, although that had been hard enough. I had timed it during that precious 6-hour window of freedom he had off of TPN each day, and in between naps and pumping and doctor’s appointments and therapies and feeding sessions that could take up to an hour apiece, just to get him to finish off two teaspoons of breastmilk. I had loaded up diapers and wipes and spare clothes and medical tape and saline syringes and sterile gloves and a g-tube extension and a spare dressing change kit, trying to prepare for whatever hurdles might come our way. I had mustered the courage to take him out in public in November, and to brave the many things that could go wrong outside of the safety of our house.

But beyond that — nearly six months of constant struggle had led up to that simple trip to the store. The yell I stifled was made up of countless sleepless nights, countless hours wondering if we would ever find normalcy again, countless days when I’d had to buy my groceries solo, because my child was not allowed to leave the hospital. It was made up of six months of fear, six months of learning to cope, six months that had dropped me into a life I barely recognized.

That simple act of normalcy – pushing my baby in a cart through the produce section – was so utterly jarring, on the heels of our struggle, that I felt like I didn’t belong, like we must stick out like a sore thumb, and I couldn’t quite wrap my head around the fact that no one had noticed us.

It’s been one year since we became a family of four. I’ve barely blogged since G was born. Partly, that’s because our lives and hands have been so full; where I used to sneak time to write after L was asleep, I’m now doing back-to-back bedtimes for two and often falling asleep before the end of the second one, because I’m exhausted from middle-of-the-night escapades; where I used to sneak time to write over my lunch break, I’m now pumping and pumping and pumping some more.

But a big part of my long mostly-silence comes from the fact that things have been so gosh darn normal that I’m not sure what to say. And it’s not that there’s nothing to write about — it’s just that it’s difficult to explain, in a quick blog post about how everyone is doing well, the enormity of that normalcy for us, when for a long time we didn’t know if we would ever get here.

We are happy. We are well. And I am still awed and stunned, every single day, by the enormity of our normalcy, in a way that I’m not sure I quite have the words to describe.

Happy Independence Day, fellow patriots

As the 4th of July approaches, I’ve been struggling with how to celebrate what used to be one of my favorite holidays. Growing up, it was a grand day of celebration. Each year my extended family descended upon my grandparents’ house decked out in red, white, and blue and armed with an entire arsenal of “Screaming Mimi’s,” “Bob’s flaming balls,” and our all-time favorite, the “Baby Boomer”; we would then proceed to eat our way through an all-day picnic while seeing exactly how large of an item we could launch sky-high using bottle rockets and waiting for it to get dark enough to begin our very own amateur fireworks display (what could go wrong?).

This year, though, I haven’t been feeling particularly patriotic. Honestly, given the current state of our nation, the thought of donning stars and stripes has been making me feel a little ill.

As I thought more and more dejectedly about boycotting the holiday altogether, however, it occurred to me that my disgust with our nation is patriotism. This holiday has always been about celebrating the promise of our nation in spite of the atrocities that litter our short history. We have never been a perfect union. But to turn away in defeat in the face of injustice is no better than turning a blind eye to it. To put our freedoms in action – be able to recognize our nation’s failures, to speak out against atrocities and injustices and work to correct them, to value the foundational principles of our democracy above the reprehensible actions of our leaders and work to make those principles a reality for all Americans – to me, that is true American patriotism.

And so this 4th of July I will be a patriot.

I will put on my red, white, and blue and write letters to my Congresspeople. I will donate $17.76 to organizations that advocate for voters’ rights, civil liberties, and access to healthcare. I will reach out to friends who are first and second and third generation immigrants to let them know I’m glad they’re part of our community. At storytime, we will read Independent Dames: What You Never Knew About the Women and Girls of the American Revolution; Of Thee I Sing: A Letter to My Daughters; Apple Pie 4th of July; We Came to America; Grandfather’s Journey; A Different Pond; Islandborn; and A Piece of Home. I will not let the horrifying actions of the powerful few drown out the hope upon which this nation has been built.  

These things are tiny, tiny drops in a vast sea of need. But enough drops can begin to shift the tide. 

Happy Independence Day, fellow patriots. Who’s with me?

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Oley 2018: A Tale of Two Belly Buttons

Last week, we went on our very first family vacation. When L was younger, his medical needs (not to mention our medical bills) made it extra difficult to go anywhere overnight; and so we’ve gone on short trips to visit family, but we had never gone anywhere just for fun, and L had never stayed in a hotel.

We had been talking about going to Memphis this summer anyway when I found out the Oley Foundation’s annual conference was going to be held there this year. The Oley Foundation supports and advocates for people and families on enteral (tube feeds) and parenteral (intravenous) nutrition, and I had heard good things about the conference in previous years, but it had always been much further away from us and hadn’t seemed like a realistic option. This year, when L is now both line-free and tube-free for the first time, I wasn’t sure if it made sense for us to go – I’d heard it was packed with information and inspiration, and it would be nice for L to meet other kids with lines and tubes and scars on their bellies, but would we get much out of it now that L is doing so well? But we were planning a Memphis trip anyway, and the conference is free to attend, and so with a little encouragement from some other short gut parents we signed up and planned our trip to coincide with the conference.

And then, five days before we were set to leave, the potential benefit of attending was solidified for me. We were getting ready for swim lessons, and I told L he could choose whether or not to wear his swim top since the lesson was in the indoor pool. He replied:

“But I don’t want anyone to see the THING on my belly.”

Cue all the mom tears. Upon further probing, I discerned that he wasn’t really concerned about his surgical scars, but that he didn’t want anyone but us to see the spot where his g-tube used to be, which looks kind of like a second belly button above and to the left of center. It’s the freshest scar, and still red and kind of scabby. And it seems that someone at preschool had said something about it that had made him want to keep it covered.

A few days later we were off. The trip went amazingly well, considering it was our first real vacation with kids in tow. We hit the kid-friendly highlights of Memphis – Mud Island, the zoo, lunch at B.B. King’s and a visit to A. Schwab, even the top of the pyramid – and introduced both L and G to Memphis BBQ, where G discovered a deep and abiding love for baked beans. And while naptime and bedtime and a little sightseeing meant we skipped over some sessions of the conference, we hit some conference highlights as well – info sessions, networking, and opportunities to support Oley, like a silent auction and Oley’s annual Walkathon to wrap things up. And L, who has never met a stranger, thoroughly enjoyed himself, from the luau in the kids’ room to finagling his way into someone else’s family on stage during the conference’s version of Family Feud.

19807336-6D9E-429A-AB64-9B442EC35B3BI’ll be honest, though: as our trip was wrapping up, I was asking myself if it would have been worth it to attend if we hadn’t already been planning a trip to Memphis. I absolutely believe it could have been life-changing for us two or three or especially four years ago, but did it justify the time and expense now, given that L is doing so well and we aren’t currently seeking alternate treatments or ways to troubleshoot ongoing problems?

And then I heard this:

“Mama, I have to tell you something. You want to know something cool? I have TWO BELLY BUTTONS!”

For more information about the Oley Foundation and to view sessions from this year’s conference, go to www.oley.org

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Reaching out

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’

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

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!

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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