Monday, December 3, 2012

Today is the FIRST EVER National PKU Awareness Day!

On September 19, 2012, Senators Johnny Isakson and Senator John Kerry submitted a resolution designating December 3rd, 2012 as National PKU Awareness Day. Thanks to organizations like the National PKU Alliance (NPKUA) and PKU advocates like Kevin Alexander, our voices are being heard in D.C.  

While this may sound odd, I find it an exciting time to have a child with PKU! Although PKU is rare, the PKU community is a very involved and active one. This is due in large part to social media, which allows parents, patients and those who care for them to be in touch, no matter our location. The sense of community I witness nearly everyday on Facebook groups and websites like Cook For Love and NPKUA lift me up when I’m feeling down about Lucy’s condition.

For my part, I am Facebooking, Tweeting and emailing my network to ask them to take a few minutes to read my blog post about the day we found out about Lucy’s PKU, and/or to watch PKU advocate Kevin Alexander’s powerful video called, “My PKU Life.” I hope that increasing awareness for this disorder will help others see that Lucy’s medical formula and medical food are absolutely critical to her diet and should therefore be covered by insurance; and show the importance of newborn screening to detect these and other disorders before they do lifelong damage to newborns.

Please join me by liking, tweeting and sharing my blog and Kevin’s video to your network. Lucy and I thank you!!


Thursday, November 8, 2012

When life is like a bad country song

The last two weeks have been ridiculous! Not that I'm a fan of country music, but my life sure has felt like a bad country song lately.

“I woke up this morning, and the babies were cryin’
Husband still gone away, for business he’s flyin’
Dog and cat seemed sick, found out the dog’s dyin’
Oh, whoa, and I’m so very hungry and tired!”

That’s right, things have been ugly around here. Here’s a bulleted list, otherwise this post will be four pages long.
  • The hubby is out of town for business 12 out of 14 days
  • Took cat to the vet since he was peeing on the living room rug, incidentally the only baby-free zone
  • Cat is in beginning stages of renal failure, requiring a special low-protein diet
  • Other cat is not in renal failure, so needs food with protein (sound familiar?) 
  • Took dog to vet, she has a rare form of lung cancer and only a few weeks to a few months left :(
  •  Hubby is out of town
  • Babies are ever more mobile and difficult to wrangle, especially during bath time
  • Hubby is out of town
  • Mealtime with nine-month old twins takes an hour to an hour and fifteen minutes (calculate Phe, weigh low-protein food, chop low-protein food, dole out higher-protein food, chop higher-protein food, watch food doesn't get shared or thrown to floor, or blown away via a raspberry, force feed low-protein food to make daily Phe requirement...)  
  • Which is followed by special diet for the cats and dog, who needs medicine, too
  • Which is followed by a very hungry mama, who’s too tired to cook (but hooray for cereal, canned soup and frozen meals!)

"Rough as it’s been, we’re survivin'
The babies and I, will keep on tryin'
The animals, well, you take what you get,
Oh, whoa, gonna make it work, or die tryin'!"

Thursday, November 1, 2012

Happy Halloween – the twins' first experience with costumes!

Oh, do I LOVE Halloween! Before the girls, I loved dressing myself up and attending fun parties with friends. I always knew if I had children, it would become one of our family’s favorite holidays!

I decided to dress the girls as a lamb and a piglet. You guessed it, Lily, aka the garbage disposal, was the piglet. As predicted, they both cried their hearts out when I put them into their getups. But did I feel bad about it? Absolutely not, it made me downright giggly and giddy. Is there anything better than exploiting the cuteness of your babies?!

Me, Melanie and Missy with Lily the piglet and Lucy the lamb!
 My parents and sisters came over to see this milestone event, and the sistahs and I took the babies trick or treating. Once we got outside to enjoy the balmy 60-degree weather, the girls were in their element! They enjoyed all the attention and wore their piggy and sheep heads with pride.

My family asked if Lucy’s PKU means she can’t have Halloween candy. Luckily, she’ll be able to have the non-chocolate candies, though I’m not sure this is necessarily a good thing. ;-) But at least she can participate in the time-honored tradition of trick or treating! 

Monday, October 22, 2012

PKU at the Zoo

Our PKU girls (from left to right) - Breeze, Lucy and Abigail!
I took the girls on my first solo field trip today -  we went to the zoo! Better yet, we met up with two babies with PKU. Breeze and Abigail (who has a two-year old brother without PKU) both turned one-year-old recently.

I have to admit, I was nervous about going on my own! We were heading there right after our weekly hospital visit, meaning only a brief car ride nap, and I knew they’d need their solids once we arrived. With several days’ worth of orchestrating the logistics in my head, I decided to keep them sitting up in their stroller and while one baby was looking around, I fed the other. Mommy survived the feeding intact, however the stroller didn’t fare so well. That thing needs a steam wash!

Lucy crashed out!
It was such fun to hang out with fellow PKU moms Margueritte and Emele and learn tips from them on finger foods and transitioning to a sippy cup. I feel like they are my mentors, even though their daughters are less than six months older than my girls! It occurred to us that we are going to be part of each other’s lives for a long time to come. Our girls will attend group clinics together starting when they’re three. It was very humbling for me to realize how lucky I am to have such a close-knit, supportive PKU community here in Denver! It makes the highs and lows of treating Lucy’s PKU so much easier knowing other moms are sharing the same experience.

Lily also crashed out!
As for accomplishing a major field trip to the zoo with twins in tow, I feel rather proud of myself. I know that luck was on my side and I had help from the other mothers and a grandmother while there, but my pre-trip planning paid off. Lest you fear my ego is growing to out-of-control portions, I know good and well there will come a time when I have to leave an activity early because of a meltdown or worse! But, as I keep learning over and over, as a MoM (mom of multiples for those of you who are mothers of “singletons”) you’ve got to just do it. And anyway, a double meltdown would make for a great blog post, right?

Wednesday, October 10, 2012

Feeding time with the twins - a yin and yang experience

The ubiquitous Chinese symbol yin-yang 
Life is about balance. Good and bad, night and day, happy and sad. I see it in the yin and yang (darkness and light) of Lucy and Lily's personalities. In the same way, feeding time has become both happy and sad for me. Let me explain why.

We learned at just 11 days old that Lucy had PKU, requiring us to give her a special PKU formula that is stripped of Phe but contains the remaining protein-based amino acids critical to her development. Though I was extremely sad I had to temporarily stop nursing her to get her Phe levels out of the danger zone, I was able to start again a couple weeks later. We quickly adjusted to a  combination of nursing and formula-based bottles, and feeding time was easy.

Fast forward to today. We started the girls on solids at about five and half months old, and they've adjusted well. In fact, Lily is my piglet! She eats anything and everything, and in very large quantities! Lucy, who has a limited diet requiring me to weigh her food in order to calculate the Phe in each item, has been less interested in eating overall, though that is quickly changing.

However, I've been struggling. It is VERY hard to give Lily such a huge variety - jars of every fruit and vegetable imaginable, combined with meat, veggie and grain combos and now, finger foods including puffs, Cheerios, and pieces of soft fruit like pears, peaches and melons. It breaks my heart to give her more of what she likes, while right next to her, Lucy "only" gets her measured amount. She is also starting to notice what's on her sister's tray, and even reached over last night to steal a Cheerio!

I "sneak" her bits of the fruit that I'm giving Lily, but have to be careful as I'm not yet including it in her daily Phe calculations. I know my feelings have nothing to do with Lucy - she loves her more-limited selection of fruits, veggies, and even rice puffs (which I do count). I don't know if it's having twins who are the same age and development level sitting side-by-side, but mealtimes have been making me feel sad lately. I am very careful to keep an upbeat attitude around the girls though, because we must never make Lucy feel she is "different" or that her diet is something to be sad about, but it's hard for me right now, nonetheless.

Lucy, eating rice cereal and fruit puree.

Lily, looking like she has badger stripes on her nose from prune and oatmeal cereal!
As with everything PKU-related, I know we'll get through this and that feeding the girls a little differently will become our new normal. In the meantime though, I am going to accept and share my feelings behind the scenes so that I can appreciate the things that are GREAT about mealtime - the girls are full of shenanigans each morning and evening and make messes of themselves that are nothing short of hilarious! In fact, seeing these photos makes it easy to follow the advice given by Bing Crosby in the old song that goes, "You've got to accentuate the positive, eliminate the negative, latch on to the affirmative, don't mess with Mister In-Between!" Less yin than yang, indeed.

Saturday, October 6, 2012

Heartfelt video by PKU advocate Kevin Alexander about living with PKU

Thank you for the work you do to spread awareness about PKU, Kevin!
It can be difficult to explain to people exactly what PKU is, what it entails, and how it will affect Lucy when she's older.

When I met Margueritte, fellow PKU mom of one-year old baby girl Abigail, she turned me on to a video by U.S.-based videographer and PKU patient and advocate Kevin Alexander. He explains much better than I can what PKU is and what it means to have it. His inspirational video makes me cry every time I see it. In fact, I watch it whenever I'm feeling down about Lucy's diagnosis because it makes me feel hopeful again. Enjoy, and feel free to share it!

Friday, October 5, 2012

Bodie's video production - playtime with Lucy Goosey and Silly Lily

Bodie is quite clever and creative when he has the time to be. He put together this video compilation a few weeks back covering the girls' adventures from approximately three to six months. Hopefully he will be able to create these every few months so we can recap their ongoing antics!

Wednesday, October 3, 2012

When s*&% happens - or doesn't

Who knew this cleverly captioned onesie would come
to have such relevant meaning?
Wow, what a day I had this past Monday! Now that I’ve had a few days to recover, I am finding humor in the situation as it's poop-related - really.

Each Monday, I take the girls to Children’s Hospital so they can draw Lucy’s blood and make sure her Phe levels are stable; and take her weight to make sure she is growing appropriately. We have to time it just right – between two to four hours after Lucy eats. This means we skip morning nap. And of course, Lily comes along for the ride.

As they are getting more and more mobile, they enjoy being restrained in their stroller less and less. Combined with the fact they skip morning nap, they are usually VERY fussy, if not in full meltdown mode, by the time we leave. Once we get home, they are always tired AND hungry, and cry through their entire “second breakfast” consisting of solids. Nap after solids is typically craptastic since they are off schedule, so…pretty rough day as far as mood and fussiness are concerned.

Add to that, poor little Lucy was severely constipated this week, a common occurrence likely caused by her PKU formula. She didn’t poop all weekend and by Monday, was straining and crying every 15-30 mins. – so sad!! And who knew I would become so obsessed with poop as a new mommy?! By early afternoon, I made a desperate call to the pediatrician to find out what to do. She said buy a glycerin suppository, and stick it up her little butt. OK, done! I took a “quick trip” to the grocery store to buy it. (As a reference, a quick stop at the store by myself would take approximately 15 mins. round-trip, at the most, but with the girls it took 42 mins. Yes, I timed it this trip!)

In with the suppository, and in less than a minute, out with a huge poop! Wow, I was as excited as I used to get by happy hour with my girlfriends! And naturally, within an hour, a monster blow-out that got everywhere, including my arm. Don’t think I was upset though, my baby girl was her usual, happy self and so comfortable she took a great nap, which helped me put the whole day in perspective!

Morale of the story – sometimes s*&% happens, or in this case doesn’t, but you somehow make it through the day intact!   

Monday, September 24, 2012

P-K-whaaa? The day we learned about Lucy's PKU

Thank goodness for newborn screening!!
I will never forget the day we learned about Lucy's PKU. P-K-what, you might ask? I know we certainly didn't know what the acronym stood for, let alone the implications this little three letter beauty had in store for us.

PKU, short for Phenylketonuria, is an extremely rare genetic condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine (more commonly referred to as “phe.”) Phe is found in all foods, though at dangerously high levels in high-protein foods including meats, dairy, seafood, legumes and grains. Left untreated, phe builds up in the baby’s system and causes irreversible brain damage and severe mental retardation. 

Thank goodness that in our great nation, it's a federal mandate that all newborns' heels are pricked and their blood screened for a variety of conditions, including PKU. When caught in infancy, PKU babies grow up to become perfectly normal children.

When the girls were just 10 days old, we received two very confusing phone calls: one from our pediatrician's office and another from a random lab tech at Children's Hospital, both telling us we needed to have both girls' blood tested again as Lucy's results showed she might have PKU. The test was simply to confirm whether or not the disorder was indeed present and to make sure the blood results were for the correct baby. Naturally, we performed a cursory Google search, but since PKU is incredibly rare (only about 1 in 20,000 newborns are afflicted) and the test could easily have been a false positive, we thought nothing of it. We didn't even read up on the condition. We had brand new twinfants after all, were sleep-deprived and overwhelmed, so were annoyed more than anything at having to take them out for an unexpected field trip in the middle of winter.

Fast forward to Monday, when they were 14 days old. At 5:12pm, Bodie answered the phone and heard from a genetic counselor at Children's Hospital that Lucy, the first-born baby from our perfect set of twins, had PKU. We needed to bring her to the hospital in the morning to meet with a team of metabolic specialists. I remember my heart pounding and feeling sick to my gut as I realized what she was telling him. After he hung up the phone, we looked at each other and immediately Googled PKU, this time more closely reading websites with terrifying phrases like "irreversible brain damage and marked mental retardation within the first few months of life," "behavioral problems and seizures in older children,""two people who conceive a child must both be "silent carriers" of the gene" and perhaps most disturbing of all, "a lifelong diet that does not allow consumption of meat, fish, poultry, milk, eggs, cheese, ice cream, legumes, nuts, or many products containing regular flour." Needless to say, it was a sleepless night, and not because the babies woke me up crying. 

So many thoughts tumbled through my mind that long night. Oh my god, my baby will become mentally retarded if she eats protein? What the hell will she eat? It's so serious that we have to go to Children's Hospital in the morning to meet with a TEAM of medical professionals to learn how to manage it? She has it because my husband and I are carriers of a gene mutation? And finally, was THIS why we weren't able to get pregnant after four years of trying before deciding to interfere with nature by using science to conceive through IVF? Did we bring this on our precious baby?   

Almost eight months later, I've come to realize that this is the bottom line: none of these questions matter. Through the marvels of modern medicine, Lucy's condition was caught well before it caused any brain damage. And through the marvels of modern science, there is Phe-free formula and an ever growing list of specially-made low-protein food products available for purchase at the hospital and online. Our baby has a treatable condition, unlike many of the little ones I see each time we go to visit the girls' "hospital friends." 

Will I have to schlepp her and her twin sister to the hospital every week for the first year to get her blood drawn and weight measured to make sure her Phe levels are stable and she's growing enough? Yes. Will I have to carefully plan ahead, weighing everything she eats, and will she always have to follow a very restrictive, low-protein diet? Yes. Will she always have to drink an expensive (so far covered by health insurance) medical-grade formula stripped of Phe in order to meet her body’s protein requirements? Yes. Will it change the way our family eats at restaurants, during holidays, on vacation, not to mention everyday? Yes. Will I sometimes feel overwhelmed and really f*&^ing pissed off about it? HELL yes! 

But you know what? She has been, currently is and will continue to be as healthy and happy a child as her sister, and that's enough to get me by. 

Welcome to For the Love of Twins!

Welcome to my new blog site, For the Love of Twins! Having twins is a unique, challenging and rewarding experience, so I’ve decided to share some of our adventures with the world.

Lucy Kathryn and Lillian Renee Francis joined the world at 6:12pm and 7:08pm on January 30, 2012, forever changing our lives. Since then, Bodie and I have experienced what can only be described as a roller coaster ride of life changes and emotions! From sheer exhaustion to utter elation, these little girls have brought more joy (and tiredness!) than we could have ever imagined.

Monkey See, Monkey Do - A Great Way to Describe Twins
I will also share our journey dealing with a genetic disorder called PKU, which Lucy was diagnosed with when she was only two weeks old. PKU, short for Phenylketonuria, is an extremely rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine (more commonly referred to as “phe”.) Left untreated, PKU causes irreversible brain damage. Lucy will have to follow a very restrictive, low-protein diet and drink a medical-grade formula stripped of phe in order to meet her body’s protein requirements. But other than that, she will be as happy and healthy a baby as Lily! 

I hope you will enjoy following this blog as we experience our babies’ first milestones, laugh as we learn to manage “double trouble,” and gain awareness about Lucy’s PKU!