Month: October 2016

Judge Not

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I was one of those annoying pregnant women who read and researched every possible path, decision, option, and/or outcome. Truth be told, I’m not really a fly-by-the-seat-of-my-pants kind of gal in everyday life, so throw a baby in the mix and I go into Type-A overdrive. After reading all of the literature and speaking to doctors and other moms, I had every intention of breastfeeding Oliver when he was born. And, in fact, I was successful for nearly four whole days. But, despite what any well-meaning or sanctimommy tells you, breast is NOT always best. There, I said it.

I feel like I should stop here to say, I’ve never been a judgy person when it comes to breastfeeding. I was not (and still am not) one of those women who feels particularly passionate about breast vs. bottle. I have never felt compelled to shame another mother for formula feeding in the same way I’ve never felt the need to shame a mother for breastfeeding in public. I’ve known lots of women who have breastfed and plenty who went solely with formula, and a fair number who settled on something in between. Quite frankly, any minor inkling I’ve ever had to pass judgment on another person is quickly dispensed with when I think about all of the many children around the world who don’t have nearly enough to eat. When I am reminded of that, it doesn’t take long for me to realize that however you got him there, your happy, healthy, well-fed child is none of my business.

But for me and my family, I decided it was what I wanted and I had high hopes for being able to stick with it. It was a personal decision and one I made freely for myself. At the same time, I also openly announced to my husband, family, friends, doctors, and admitted to myself, that if for some reason breastfeeding did not work out, I refused to feel ashamed for having to go a different route.

Many times when I talk to folks about galactosemia and the fact that Oliver lives dairy-free, they are surprised that he was/is unable to breastfeed. They often equate his condition with having an allergy and, since many babies who have a milk allergy or sensitivity often can continue to nurse if mom makes some dietary changes, I’m sometimes met with confusion as to why I didn’t just eliminate dairy from my diet and continue to fight the good fight. I then have to point out to them that, in the case of galactosemia, galactose is present in all mammal-made milk, including breastmilk (yes, humans are mammals, too), so a diet change wouldn’t protect our baby. In essence, my breastmilk was poisoning Oliver and therefore I had to stop.

Despite my laissez-faire attitude on the matter before Oliver arrived, I had a really, really, really tough time accepting the fact that I was not able to meet one of Oliver’s very basic needs in the same way women have been doing since the beginning of time. Maybe it was a biological yearning, maybe it was hormones, but I felt like a complete and utter failure at motherhood and life. Add to that the stress of having a newborn in the hospital fresh off a diagnosis of a rare condition and also having to physically force your body to STOP doing something it is biologically predisposed to…well, let’s just say it was an ugly time emotionally and physically for me.

I lay all this out for you in hopes you can understand then just how disheartening and daunting it can be the first time (and very possibly not the only time) a loved one, a friend, an acquaintance, or even a stranger quotes those three little words to you: Breast is best. It’s hard to know what your reaction might be. If you are like me, you might be inclined to give the person the benefit of the doubt. They mean well. They are just making conversation. They want to make sure you have all the facts. But quite quickly that might be replaced with anger and indignation. How dare someone presume to tell me what is right for my baby? They have no idea what we’ve been through? How can they lack basic empathy for another human being?

And then you will be faced with a choice: (a) become combative; (b) smile and nod; or (c) use the moment as a teaching opportunity to educate someone about why you aren’t breastfeeding. I’d love to say I am one who always is able to rise above and not let it bother me, particularly when I try initially to take the high road and the other person can’t take a hint. But I’m human and sometimes, on a day when maybe I’m struggling or frustrated or in a hurry, the last thing I want is for someone to presume to know what is best for me and my situation. I hate to admit it, but in those moments, I sometimes want to make the other person feel bad. Feel small. I get angry that I’ve allowed this person to make me feel guilty and revisit feelings I had when I felt like such a failure in Ollie’s first days in this world.  Just admitting that I could feel that petty makes me feel a real sense of shame. But, in those moments, I have to ask myself: What good will that do, making this person feel small? Will it make me feel better? Will it make this person think twice the next time? Who’s the hero of that story–the presumptuous stranger or the snapping mom?  I try to remind myself that I always hope to be the hero of my own story so maybe if I take the high road and try to educate whoever is sharing their advice, I can open that person’s mind to the fact that there is no SINGLE way to raise a baby, to feed a baby, to dress a baby, to diaper a baby, and on and on. Maybe killing ’em with kindness makes more of a lasting impression than lashing out in anger and frustration. I try to remind myself of all of that, and sometimes I may fail, but if I’m lucky, more often than not I will succeed.

Footloose and Dairy-Free

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When I try to explain to people what having galactosemia means for Oliver, especially for the first time, one of the easier aspects to explain is that he is required to have a restricted diet and, in particular, can not have any dairy products. If this were the CliffsNotes explanation of galactosemia, you could file this under the Major Themes section. It’s one of the easier aspects for others to understand considering the number of children with food allergies and other aversions these days.almond-milk

Something else we find ourselves explaining is the fact that John and I decided to also go dairy-free fairly soon after Oliver’s diagnosis. We debated it for a long time, but in the end, it was the decision that made the most sense for our family. I have known plenty of children with food allergies, including family members, who have not restricted their own diets and I imagine there are plenty of other Big G families out there who do the same. And to that, I say, you do you, boo! No one knows your family the way you do; it’s a personal decision for sure. For us, we made the leap to living dairy-free for many reasons, so here are just a few:

  • Curbing accidents – By keeping products Oliver can’t eat out of the house, we are hoping to statistically cut down on the chances of him having an “oops” moment at home. We are realists so we’ve resigned ourselves to the idea that at some point, he will probably have an accident. Maybe another well-intentioned parent will accidentally offer him a cookie or he will reach onto a classmate’s plate and steal  a cheese puff (because, seriously who can resist?), it’s bound to happen at some point. In the US, dairy is so pervasive it almost seems inevitable. If we can cut down those odds even a little, then it’s worth it to us.
  • Economic impact, part 1 – Groceries are expensive, especially if you like to shop the outside of the store like we do. Fresh produce, meat, fish, and dairy (and the dairy-free products in that department) can add up quickly. Add to that snack foods and other packaged products, the idea of buying two of everything–one Oliver can eat and another he can’t but maybe we are used to buying–is enough to have me consider taking on a part-time job. Visions of a fridge and pantry packed with two versions of most everything, seems like such a waste.
  • Economic impact, part 2 – I am a big proponent of my voice, my dollars, and my internet “clicks” being valuable commodities. I believe that as a consumer, my opinion and needs should matter  to the businesses I support and if I find myself in a position where they don’t, then I have the luxury of moving on. We looked at our decision to go from buying for a single person in our family with special dietary needs to a family of three as hopefully a bigger statement to food-related businesses on the need for dairy-free food products and explicit labeling.
  • Health? – I put a question mark after this one because quite frankly I think the jury is still out as to whether animal-produced dairy products are good for you, bad for you, or somewhere in between. Like eggs, coffee, red meat, and wine, there seem to be new studies and advisories every year. What I do know is not having dairy in his diet won’t hurt Oliver and it is absolutely possible for him to have a well-balanced, healthful diet without it.
  • Second nature – By going dairy-free ourselves, John and I will find ourselves each and every day making decisions like Oliver will on what he puts into his body. We’ll have to ask questions, do research, and have back-up plans and hopefully, by doing that now, we will be able to help him better make decisions for himself and give him the ability to navigate the world confidently.

We have faced mixed reactions when we tell people, but one of the recurring reactions is, “I could never do that! I love cheese/chocolate/butter/fill-in-the-blank too much!” And had you asked me a year ago, I would have probably said the same thing. But honestly, once we made the decision, it really was like flipping a switch. We are so thankful to live in a time and place where we can find alternative versions of most everything!  I can’t say this is a decision for everyone, but for us it definitely feels right.

**If you are looking for an AWESOME resource to get yourself started or to learn more, Go Dairy Free is my go-to! Great recipes, advice, information, and product reviews!

 

Begin at the Beginning

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My pregnancy with Oliver, and the labor and delivery to follow, were unremarkable. At least, that is how I’ve heard it described by medical professionals. Forty weeks of normal. The closest thing we came to even a blip on the radar was a borderline gestational diabetes test that warranted a second, ultimately normal, blood test. Otherwise, it was pretty much a textbook pregnancy. Of course, that’s not how John and I would describe the whole thing. Unremarkable. It was the least unremarkable thing to ever have happened to us. This pregnancy and this baby was everything. He consumed every thought and every moment from the very beginning. And, well, really that has never changed.

But as we’ve come to know, an unremarkable pregnancy, even one as treasured and planned as this one, did not mean there would not be challenges once he arrived. And on the fourth day of his life, two days after bringing him home from the hospital, these two exhausted, bleary-eyed yet over-the-moon new parents got a call that changed everything.

All three of us–John, Oliver, and myself–happened to be in the car shuttling me to a postpartum doctor’s appointment when I noticed I had missed a call and had a new voicemail. The message was from a nurse at the Children’s Hospital of Philadelphia calling to inform us that one of our son’s tests had come back as positive and to please call her immediately. Immediately. That’s not a word you want to hear in a message about your child. But I actually scoffed a little when I listened to it. It was a mistake, I told my husband. After all, our son hadn’t been born in Philadelphia and he hadn’t undergone any tests. His birth hospital had discharged our happy, healthy baby to us, free to go home and start our life as a family of three. There was no reason this nurse should be calling me. She hadn’t even used my name or Oliver’s in her message. It was definitely a mistake. Someone is going to feel really badly about this, I remember saying.

We had forgotten entirely about his newborn screening. The nurses had taken the blood sample so soon after birth, before the throes of childbirth had even really settled, and we were just so ecstatic he was finally  here and crying and lovely and BIG and in my arms. We were focused on remembering this moment and him, all of him, his face, his eyes, everything, so much so that I don’t recall much of what happened between the time he arrived and the time we were getting settled into our post-delivery accommodations. I only have a vague recollection of a nurse saying she would be doing a heel prick for some blood and him crying just a little before being placed safely back into my arms. But that tiny memory had gotten washed away in the excitement and exhaustion of it all. It wasn’t until after I found myself calling back this CHOP nurse, feeling most self-assured that she had made a mistake, that little memory started to materialize. During that call, she did in fact confirm our son’s name and informed us one of his newborn screening tests was positive. My stomach plunged. I am not sure what I said then or if I said anything at all, but it was enough for John to pull over and turn off the car. I sat in the back seat with Oliver and searched him as he slept, all while this nurse on the phone launched into a series of questions. No, I was not near a hospital. Yes, he had been eating and sleeping. Yes, he was making diapers and they seemed normal. Well, I’m not sure, how can you tell if a baby is lethargic? We thought newborns slept a lot. I don’t know if we have a history of galactosemia in our family. I’ve never heard of galactosemia. Can you spell that? I don’t know how soon we can get to Philadelphia. She paused for a moment, probably sensing the wheels coming off the bus, and asked if I had any questions. I asked the only one that came to mind. Is our baby going to die?  I barely got it out. Squeaked it was more like it. The tears came hot and fast after that. Her answer was no, but I needed to stop nursing and I needed to get him to a hospital as soon as possible.

The next hours were a blur, but basically involved me launching into a fit of hysterics, John doing his best to hold himself together so at least one of us could answer calls from doctors and soak in the next steps, and there was a lot of kissing the baby’s forehead and stroking his little hands and cheeks by both of us while he essentially slept through all of it. We were instructed to go to Penn State Hershey Medical Center’s emergency room where they had been apprised of our situation and were expecting us. When we arrived, the staff took Oliver back for an evaluation, starting with a test of his blood glucose level. He was hypoglycemic and his glucose level was low enough that everything immediately became more harried, petrifying really, and we watched as our four-day-old baby now lay on a stretcher in the middle of an emergency room. A team of doctors and nurses descended upon him. Our baby, who at birth had weighed in at a whopping 9 lbs., 9 oz., now seemed impossibly tiny. For my part, all I could do was look on, helpless and sobbing as they worked to get an IV started. Both legs, both arms, both hands. It finally ended up in the side of his head. At the time, I didn’t know this was a common practice. It was horrifying to watch. And even though I know now that it was necessary and effective, it isn’t something I ever want to repeat.

Once the line was in and fluids started, we were finally able to secure a room and the nurse explained what had happened, particularly why it was so important they acted quickly. They worried his hypoglycemia would lead to seizures. That was the immediate fear. Along with the IV fluids, they fed him little packets of a sugar solution. Oliver was placed onto a bili blanket and under a bili light to combat the jaundice caused by the galactosemia (what we had earlier thought was just a typical case of jaundice). The nurse had given him an orange pacifier to help comfort him and had placed little goggles over his eyes. He looked like a little glowing alien. Next, they needed to draw his blood. Lots of blood. His ER doctor wasn’t even sure they could get the amount of blood from him needed for the tests. It took some effort, but they eventually got all that they needed

For the record, babies are amazing creatures. Resilient, calm, forgiving. After all the poking and prodding, the weird lights and wires, having parents who were barely holding on, our little Oliver just laid there, content with his new pacifier, unaware of his bloodstained dinosaur onesie, and happy to sleep under the warm lights. The doctors decided he needed to get to CHOP sooner rather than later. So, we loaded little Oliver into an isolette and into the back of an ambulance where I rode along with him while John went home to pack our bags and catch the last train of the night to Philadelphia.

One long, very bumpy ambulance ride later Oliver and I arrived in Philadelphia and were met by another team of doctors and nurses at the NICU. More poking (his IV line had clotted or clogged or just generally stopped working), more prodding, more questions and paperwork until finally he was settled into his little NICU bassinet. Side note: have you ever seen a skilled NICU nurse coax a vein out of a little baby’s arm and get an IV in on the first try? There are no words to describe how amazing it is to behold and how thankful as a parent it makes you. Eventually he was comfy and cozy, and happy to snooze as if nothing had happened at all.

Even though at the time it felt like an eternity, in hindsight, we were lucky Oliver only needed to stay in the NICU for a few days just long enough to be sure he would tolerate a switch to a soy-based formula, was able to regulate his own blood sugar and potassium once the IV fluids were withdrawn and all of his vitals stayed steady. He bounced back pretty quickly and despite  a scary few days, was on his way home one day before his one week birthday. It has and continues to be a long journey, but we grow more confident in our ability to tackle any challenges headed our way with each passing day.