Passing the time, waiting to see the doctor...

We Now Continue With Our Regularly Scheduled Programming

Hello all of you glorious humans! You may have noticed I’ve been on a bit of a hiatus for the past few months. I knew heading into the holidays, we wanted to spend time focusing on enjoying family time, creating new traditions and memories,  and  catching up with friends, which meant taking as much of a break from the regular push-pull of life (including this site) as possible. Add to that scheduled break both John and I starting new gigs (surprise!) and bing-bam-boom…Happy February!

Here’s what you may have missed in Ollie’s world while we were away:

In early December, Oliver had his one-year check up with his metabolism specialists in Philadelphia. The appointment was one year and one day from his N/IICU discharge. Over the last year, Oliver has been in to see his doctors a half-dozen times and each time has been a measure of the progress he is making both developmentally and in terms of his numbers, specifically Galactose-1-Phosphate (Gal-1-P) and galactitol.*

Discharge day in 2015

Discharge day in 2015

One year later!

One year later!

 

 

 

 

 

 

 

 

 

 

The appointment, which marked one full year of Oliver living with galactosemia, went really well. He’s showing proper weight and height gains, his physical development is right on track, and so far there hasn’t been anything to point to other complications. As always, the visit included a trip to the lab for a blood draw (awful as always, but that’s a post for another day) and should have included a urine collection. Unfortunately, we had made the appointment for late in the day and Oliver’s bladder, no matter how much we pumped it full of formula and water, just would not cooperate before the lab needed to close.

We also had our regular meeting with  one of Oliver’s dietitians while we were there. We are finally (FINALLY!) making the move away from his soy formula and towards dairy-free milk like a big boy! We had been making a gradual, and pretty passive, shift toward weaning but now that we have an official green light, it’s both exciting and petrifying. His soy formula has always felt like the tether that was keeping him safe at dock. In my mind, it was also the thing keeping his numbers trending downward. Now, it feels like we are starting to drift out to sea and it is hard to feel at ease with the change.

Fast forward a few weeks (well, more like 6 to 8 weeks) and we received Oliver’s Gal-1-P result. To our surprise, it went up. Not a large increase, and not enough for his doctor to be alarmed, but it is still so disappointing. His numbers have been going down beautifully since his diagnosis…until now.

To give you a frame of reference, we are told that the Gal-1-P in a person without galactosemia should be less than 1. When Oliver was admitted to the N/IICU a year ago, his was higher than 130. As a galactosemia patient, Oliver’s doctor would be happy if his Gal-1-P gets down to less than 5 and remains there throughout his life. His most recent Gal-1-P prior to December was 9.6 (so close!); it was 10.33 at his December appointment.

Oliver's Gal-1-P 2015-2016

Oliver’s Gal-1-P 2015-2016

It went up and we haven’t even gotten it below the ideal baseline yet.

It’s hard not to panic when you see the results for your child – once so beautifully trending downward – start on what appears to be an uptick. It’s hard not to feel as though you are failing him somehow. That you must have done something wrong, read the labels of his food incorrectly, given him something that he shouldn’t have. Familiar feelings of panic can start to bubble up and bring you back to that very lonely and sad place you once were earlier in diagnosis.

But then, hopefully, you will have a helpful, gracious doctor to bring you back to the present. Even though I know his doctor would have called with a follow-up if he had been concerned with Ollie’s numbers, I couldn’t help myself from calling his office. Thankfully he returned my call the same day, heading into the evening, sparing me from a restless night of worry and what-if’s. He reassured me that this isn’t out of the ordinary and reminded me that there is a standard deviation with the Gal-1-P (i.e. an acceptable error rate) of 1 or 2, so that this number alone isn’t a cause for alarm. He also reminded me that a small change like this is less concerning than a huge upswing that might alert us to something wrong and that, given Oliver’s very high number at diagnosis, he’s been very happy with his progress and trends so far. And, perhaps most importantly, he reminded me it’s always okay to ring him when I’m concerned, he’s happy to answer my questions (even if it’s for the millionth time; my words not his), and that Oliver is a healthy, happy kid.

We hung up and I proceeded to cry (shocking, I know), mostly from relief but a little bit because when you feel vulnerable and scared and someone is kind to you and reminds you, with some authority on the matter, that your kid is fine, it can be hard not to cry from a combination of happiness and gratitude.

Then, in January, Oliver was due for a check-up with the pediatric ophthalmologist. One of the more common conditions that can arise in children with galactosemia is cataracts. This was Oliver’s third eye exam since birth (once in the N/IICU and another at around 2 months old). I am happy to report his eyes are still clear.

Passing the time, waiting to see the doctor...

Passing the time, waiting to see the doctor…

This also happened to be the first big doctor’s visit that I did not attend with Oliver. As mentioned above, John and I both started new jobs this year and we have needed to do a little more divide-and-conquering to make sure Oliver’s needs are being met. I was a little nervous to hear how Oliver would handle the dilation drops now that he has arms that can certainly take a swing at you and legs that can land a pretty good kick out of protest. John was happy to report that he took the drops and examination like the champ that he is.

Even though his eyes are still clear, we’ll continue to monitor him annually or sooner if we have reason to suspect anything with his eyes has started to change. We also managed to get a urine sample to the lab on that trip, so we are awaiting his galactitol result.

So, long story short: We’ve made it through a year! And so far, so good.

I’ll be back to providing updates semi-regularly now that the dust on the new year has settled!

Thanks for checking in!

 

*Of course, these two numbers aren’t the only two that matter and there are a host of other tests, measurements, etc. run each time he goes, but these are the two, at least at this point, that we are the most concerned with keeping in check.

 

A Thousand Times, Thank You

Today seems like the most appropriate opportunity to express our undying gratitude to everyone who contributed to our Team CHOP fundraiser for galactosemia research. Thanks to all of you, we exceeded our $1,000 goal! I cannot think of a better way to honor Oliver’s first birthday than by raising this money.

I have a secret to share with all of you: I am terrible at asking for help in my personal life. Even if I am truly in need of rescuing, I tend to feel burdensome and vulnerable (two things I have a really difficult time with). Most of the time, I would rather just carry the burden of whatever I am facing by myself, or by leaning on John. I think it stems from a fear of rejection or a fear of appearing weak to others (I suppose that’s for me and my therapist to sort out though).

By way of example, John and I had decided to board our dogs at their favorite kennel starting the day before my due date last year and had expected to pick them up some time the following week, in hopes that Oliver would make his debut and we would have a little time to get settled in with our newest addition before adding two wild beasts to the mix. A week tops, we thought. But Ollie came a couple of days later than expected and then we found ourselves in Philadelphia so we needed to extend their stay. We knew they wouldn’t mind since they consider it a home-away-from-home and more akin to doggy paradise than a kennel. But I knew they would be running low on food very soon and we didn’t know when we’d be back in town to drop some off. I agonized over what to do and finally, despite my feelings on the matter, we asked our very dear, sweet friends, Erin and Ethan*, if they would mind dropping some by. I am pretty certain my text to Erin contained repetitions of the phrases “I’m so sorry to bother you” and “I promise I’ll reimburse you for the food as soon as I can” and “If you can’t, I totally understand.” Did I mention how bad I am at asking for help?

Anyway, this is just my long-winded way of telling you all that it was not and is not easy for John and I to ask for your help in our cause but we are so very glad we did. We still cannot believe how amazingly generous and thoughtful each of you has been! I do not know if I could say thank you enough times to adequately cover just how thankful we are, but I promise I’ll spend my lifetime trying to!

Most of all, we are just so grateful to have ALL of you in our lives. To know that Oliver has a tribe of such amazing people in his corner is more than we could ever ask for. It warms our hearts to no end. You are all kind, loving, wonderful people! Thank you, thank you, thank you! A thousand times, thank you.

Happy Thanksgiving and thank you for giving the Lucy family that more much to be thankful for this year!

*Just a little note about our friends, Erin and Ethan: they are two of the most giving, kind and loving people we could ask to have in our lives. A blessing, truly. And I feel 100 percent confident in saying our hesitation in asking for help had nothing to do with us thinking they would be unwilling to help us out  and everything to do with our own neuroses 🙂

Strangers No More

It’s the night before the big race and I’ve had the overwhelming feeling all day that the universe is trying to remind me just how good and decent people can be.

Irish greeting, literally "a hundred thousand welcomes"

Irish greeting, literally “a hundred thousand welcomes”

Take this talisman. It’s hanging on the front door of my lodgings for the evening. I had never heard the phrase before, but recognized it as probably Gaelic and when I looked it up I see the literal translation is “a hundred thousand welcomes” and it is, in fact, a common Irish greeting. After the day I have been having today, it seems evermore meaningful.

When we originally planned this trip to Philadelphia, John and Ollie were supposed to be joining me so we had booked a hotel near the start/finish of the course to make life easy. We booked months in advance and it was still ridiculously expensive. We could have booked something further way, but the added headache of finding parking and navigating closed roads hardly seemed worth it. We even contemplated getting up super early and driving in from Harrisburg the morning of but, again, that seemed like a logistical nightmare. So when we finally decided a few weeks from race day that it would be too much to schlep poor little O to the race to hang out all day just to catch a glimpse of me for a few seconds on the course, we started to reevaluate. It’s one thing to justify the expense of the hotel when all three of us needed a place to stay, but now that it would just be me flying solo, it gave me pause. Don’t get me wrong, the idea of having  a large comfy bed all to myself for the night in a luxury hotel sounded fantastic, but it just seemed like  a little too much. So I decided to go with an Airbnb rental instead. Renting a room in someone’s home, rather than their full apartment or house, would get me close to the start line without breaking the bank. Double win.

I was a little apprehensive about it but I knew in the end I was only really going to need a place to lay my head for the night and the race starts at 7:30am so I would be out the door so early that even if it ended up being the worst experience of my life, it would only be brief. To my surprise, my host, Bill, has been absolutely amazing. Accommodating, easy-going, kind, and helpful. Truly everything you ever wanted in an Airbnb host. And the thing is, I would have showered him with all of this lavish praise even before  he did the most amazing thing ever.

When I got here, we started chatting about my plan for the morning (he already knew I was running), other times I had been in the city, etc. I mentioned that my most recent Philadelphia outings have been to CHOP where Oliver sees his doctors and then we started talking about my #TeamCHOP fundraising efforts and galactosemia in general. I didn’t think much of it more than just making conversation. But before he left for dinner, he came by my room and handed me most of what I paid to stay here and insisted I put it towards our fundraising efforts. He said when his daughter was born, she spent some time at CHOP and it is a place that means a lot to him as well. I tried to tell him it was absolutely not necessary. And then I cried. I cried a lot, you guys. How could I not? How could a completely out-of-the-blue act of generosity and kindness from a person who I had just met not reduce me to tears?

It’s a reminder that goodness is out there and shows itself when it can. Sometimes in little ways, and sometimes, like now, in the biggest and best ways. I’m going to carry this feeling with me into tomorrow where, with any lucky, I won’t need the little emergency car to come scrape me off the pavement and scoop me into the cart. Wish us luck!

Footloose and Dairy-Free

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

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.