Cystic Fibrosis: The Diagnosis

Not unlike the post about keeping Lyla's weight up, I have started and stopped this so many times. Her CF diagnosis has had such a profound effect on me, that it's almost a disservice to try to even put it into words. I'm going to try, because it might reach someone out there. In the few weeks that I've been blogging, I have already come across other families that are living with CF. it's a really powerful thing, and I am so grateful for that. There are some really awesome and strong people out there. Personally, I find it comforting to know that I'm not alone, and when it comes to getting any kind of diagnosis about your child's health, any form of comfort should be welcomed. So, I'm not just sharing this to go along with our personal CF journey, but to maybe reach any other families out there, who have been heartbroken in getting bad news about their kids. 

I have to admit that a little bit of my motivation here, is in vain. This is a subject that I'll tell myself that I'm fine reflecting on, but then I'll get some sort of weird physical manifestation of anxiety while it's being brought up. Every time that I've started to write about this, I've gotten a stomach ache, and started sweating. Whenever I hear about friends or family, that are expecting babies, and have to get any kind of testing done, I tear up. So, I'm selfishly hoping that this might be cathartic. 

Before I get into it, I need to reiterate, that Lyla is the absolute biggest blessing that has ever happened to me, in my entire life. I imagine that she always will be. No one or no thing can ever top the love and magic that she's brought to all of our lives. I know that her Daddy and grandparents agree. So, yeah, her diagnosis sucked, but it has also made me appreciate every single little second with her. 

Around 18 weeks. I remember waking up that morning..and there she was! 🖤

 

Onto the diagnosis: 

When I was 11 weeks pregnant, I went in for my first OB appointment, where they did some routine blood work. A week or two later, the nurse called me with my blood work results, and casually mentioned that I am a carrier for Cystic Fibrosis. I called my husband at work and told him, and he was a little bit concerned. He decided that he would get blood work done to see if he's also a carrier. Well, obviously he is. I cannot remember the timeline of any of this, but once we knew that he's also a carrier, we both just had an uneasy feeling. We knew that our baby now had a 25% chance of having CF. I very stupidly, but humanly, started googling every ridiculous thing that I could about CF. I did not know much about it, even though I had gone to school with a girl that had it. This is where it went downhill. In this case, the internet can be a bitch. I was reading things like if I did have a child with Cystic Fibrosis, they'll be lucky to live until they are 10 years old (try at least 40). Along with that, I was seeing things about how much medicine is involved daily (it's not that bad, by the way), how children are hospitalized overnight all of the time (that's never even been a concern for us), and just so on and so on. This is a little sensitive, but I also read in a forum, that if you are pregnant with a CF baby...well you shouldn't be. Read between the lines. I mean, that is the most absurd thought. That was never an option for us, by the way.  That leads me to how and why we found out. I kind of feel like I need to clear the air, for Lyla's sake. Since blogging, someone asked a family member of mine, if we sought out Lyla's diagnosis during my pregnancy, to know if we would even want to continue the pregnancy or not. No. Just no. I really do appreciate people feeling like they can openly ask questions about CF, but that's just not us. This is taking a really dark turn. Back to finding out...

We discussed our concerns with my OB, and she supported us in finding out via amniocentesis. We just had to put our minds at ease. My husband and I are both such planners, and we were already overwhelmed at the idea of welcoming our first baby, let alone adding some health concerns to raising this sweet, new addition. Plus, I really despise the unknown. I do not do well with it. At all. My OB let us know the risks of getting an amnio, but also eased our minds, and reassured us that if we had it scheduled for the right time during my pregnancy, and went to the very best place for it, we'd be ok. And we were. The actual amniocentesis was a little painful, but it was easy. We had it done at 17 weeks, and also found out that we were having a little girl that day. That was pretty spectacular. I was so shocked, because I was sure that we were having a boy. My mother's intuition has improved greatly since then. We met with a genetic counselor, who told us that we'd be getting our genetic results in 7-10 days. Easy enough. Then it took a turn. A dark, hurtful, frustrating turn. 

Basically, we waited for a really long time for our results, and there was a lot of back and forth via phone messages. At one point, an intern called and told me that "everything looked fine." I, of course, told our family that we were in the clear, and I even called my OB to tell her the good news. My OB had access to all of my charts, and later told us that something didn't look right. Just within the last year, I can talk about that intern without feeling anger. It was then a lot more back and forth, between us and where I had my amniocentesis done. We're going on, like, 3.5 weeks of no answers, just the genetic team trying to pacify us. This was hands down the hardest time in my entire life, so far. Once her diagnosis did finally come, I was almost relieved. I could finally move on, and get ready for my baby. I remember exactly where I was sitting, in our lovely old house, when that call did come. I remember calling my husband, and him coming right home. And I remember everyone else that I spoke to, what I was wearing, where the dog was laying... you name it. The only other day that I remember those kinds of details about, is 9/11. 

My friend's husband said that "this will be their hardest and worst day" and he was right, and I love that he knew that. We're so lucky that only finding out about Lyla's CF, has made for our worst day yet. I know that not all families are as lucky, and I know that there are many more difficult things ahead of us in life. 

I took a month to be really-incredibly-ridiculously sad, and try to enjoy the holidays (ha! Yeah right), then it was time to be proactive. I called around to every CF clinic in our state. I interviewed pediatricians. I stopped googling random shit. I took control. I have no idea where I found the strength, but I imagine that it has a lot to do with my daughter. One of the first things that a nurse told me over the phone, was not to google anything about CF, it's all dated. I must not have been the only one. Once we got some plans and appointments in order, I did feel better. It wasn't until Lyla was here, and in my arms, that I knew we'd all be ok, though. I wish that I could say that I haven't looked back since, but that's not true. This diagnosis changed us all. We're just the lucky ones in that it has become a positive, beautiful thing. I have noticed that a "side effect" or maybe a little PTSD from how Lyla's diagnosis was handled, has been that it's really hard for me to get excited about things until they happen. It's kind of a "I'll believe it when I see it" situation. That's not necessarily good or bad to me, it's just how I'm wired now. I still have my awesome, healthy girl, so if I'm a little more cynical as a result of that diagnosis, so be it. But I do believe that situations like this can be powerful enough to actually rewire us. 

This post hasn't been very light, but it's raw and real. Like I already said, I appreciate every single day with my Lyla. Because of this diagnosis, I don't care about material things that much anymore, or minutiae that bores me or seeing people that don't make me feel good to be around. It's been freeing in a way. Life is short, or at least it can be. As Lyla grows up, it will be really important to me, to teach her that being born in 2016, with CF, is almost like a second chance. She'll lead a life that we weren't sure she could, and we will hold her hand every step of the way. 

Anyone that's been given a diagnosis about a child or loved one, I tip my hat off to you, for getting out of bed every morning, and finding the strength to miraculously move on with your day. If you haven't found that strength, that's ok too. You still might. Stay hopeful and know that you aren't alone. XO 

Blonde Moments: Invisible braces, a Lyla Update, and Some Pop Culture Fluff

The biggest thing this week, is that I've gotten my invisible braces. Like I am 13. I'm not calling them (it? I only have 1) Invisalign, because I didn't technically get Invisalign. Basically though, it's the same thing, administered via orthodontist, has no brackets like Invisalign does, and costs about a 5th of what Invisalign does. My front left tooth has been the bane of my existence for the longest time. I did have braces, along with some other crazy orthodontia, but didn't wear my retainer for very long. Apparently the root of that front tooth is really short, therefore that tooth got wonky. In the 2 seconds that I've had this, the biggest benefit is that it's so inconvenient to snack, so I haven't been. I knew that I was a boredom eater..but damn I didn't realize how much! I don't even miss it. I'm planning out my meals better, for the time allotted to take out my aligner, and I'm eating much better quality food. A truly nice benefit. 

You see a cutie girl with her lollipop and pretty blue eyes, I see a tooth that must be dealt with 

The rules of caring for my teeth and aligner are so easy. In my case, it should take around 9 weeks to straighten this tooth out, and then a retainer at night forever (so dramatic sounding). What's one more thing at night, to add to grooming maintenance? I swear, it takes so much to just look half decent anymore. That said, I'm already feeling more confident. I also recently had a huge cyst removed from the top of my head. Like, so big that it was practically another toddler living with me. So, I'm ignorantly calling 2018 my glow up year. 

I love my orthodontist (she's also a friend), so if anyone local has any questions, I'll be glad to pass along more info! 

Lyla celebrated turning 2 last Friday! Her grandparents came to visit her, and we had the best weekend. She had lots of family time, lots of outside time, an Abby Cadabby cake, balloons galore, went to her favorite restaurant for dinner, and just had an all around blast turning 2. It was low key, sweet, and perfect. I loved decorating the house for her - nothing fancy, just special for her. We're hoping to get her to Sesame Place soon, as well, to extend the celebration. She loves Sesame Street so much, and I think that she is the cutest/best age to go. 

We also celebrated the weekend before her birthday, with cousins and a Carly cake 

In true Luci fashion, Lyla got 3 teeth over the last week, and it made her sick. I mean, seriously. She has been sick for both of her Christmas' and now a runny nose/cold symptoms for every birthday that she's had. I say she's like me, because my birthday is right before Christmas, and I was almost always sick over both growing up. We're still not entirely sure what happened, but personally, I think that she had some extra saliva from her teeth coming in, and it bred some bacteria. At first, I thought that maybe she had strep, because she was clearly in pain, and didn't want to swallow anything. She wouldn't let me look, but then developed a cough anyway, so it may just be a common cold. In her case, strep or not, she still goes on an antibiotic for 10 days. As much as I hate giving it to her, she's almost always better right away. This is her 4th time to take antibiotics in her entire life. My only concern is that her body starts to get too used to antibiotics over time. However, it's ridiculously important to kill any infection before it spreads to her lungs. Her pulmonologist has reassured me many times, that if she becomes immune to antibiotics, we'll move on to other treatments; but big and wonderful treatments for CF are on their way so there's no use in worrying about things like that, anyway. That is the most awesome news ever, in the entire world. 

*A few quick things when she does have a cold/has to take antibiotics: 

We've learned that for any discomfort, she much prefers grape Tylenol to mixed berry Motrin. And of course, learned that one the hard way. 

Lyla almost always has some mucous drainage to her belly, and therefore throws up a lot after laying down for so long, when she does have a cold. Mornings have now become synonymous with laundry, bath time, carpet clean up, and just generally a circus. It's not pleasant, but it comes with parenthood, and I really don't mind. Plus, she's not even upset when it happens. 

When Lyla gets an antibiotic, it's usually augmentin. I don't even know if that's spelled correctly, and I'm too lazy to look. It is gross. Plain and simple. We can add it to her pediasure, though, and that's a huge life saver. Trying to give it to her via syringe was next to impossible. Speaking of pediasure, you might be wondering why I'm giving her dairy while being concerned about mucous..I mean, I even wondered this myself. We need the pediasure for calories, because she doesn't eat as much when she's sick, and it is lactose free, so it actually doesn't seem to cause any additional issues, at least in our case. 

The best thing that I can share when Lyla is on antibiotics, is that we also give her a probiotic. We found one that works for her. In fact, it's an adult probiotic, that I also mix in with her pediasure. My husband luckily knew to try this particular one, and it's great. We take it too, sometimes. I'd check with your doctor or pharmacist, if taking a probiotic with an antibiotic, to know which is best. This keeps her belly somewhat "normal." 

Just to reassure you, in spite of all this, she is still insanely happy..most of the time. She is two now, after all, and has lots of opinions and thoughts, but for the most part, they're happy opinions and thoughts. 

Because I need to throw in a little fluff, so to speak, let's have a little pop culture chat. I took a week long break from watching any Bravo, and it was so nice. I assumed it would be a month long break, but a week was enough. I was getting so bored with all of it. I still am, but I'm not as dependent on it. That's sad. Anyway, a few quick opinions: Thomas Ravenel looks ancient and I am never comfortable seeing him with his younger girlfriends; the RHOBH reunion needs to bring it, or I will fall into a depression over how dull it is; Jax is still the worst, Schwartz is an alcoholic, and staying up to party until 8AM when you're pushing 40? No thanks. That's all I have because I'm saving RHONY for a marathon some night after Lyla goes to bed. 

Does anyone else watch When Calls the Heart on Hallmark? The previous seasons are also on Netflix. It's rated G (lol), takes place in pioneer times, in a little mining town, and is sweet and wholesome. Also, Lori Laughlin and Jack Wagner are in it, making most of my early 90's dreams come true. But um, if you watch it, can we please talk about the end of Sunday night's episode?! W. T. F? Would Hallmark even let such a thing happen? I guess we'll know soon. I don't even care that much about any of that, as long as Henry and Abigail get together. 

I was about halfway through the 3rd season of Justified, when Anthony thought he might like it, so now he's gone back to catch up. He's almost where I am, so we can watch together. It seriously is such a great show. I've mentioned that Timothy Olyphant is the lead. He is the coolest. Speaking of him, I putzed around a little with the new season of The Santa Clarita Diet (Netflix). It's ok. Very entertaining, kind of weird...one of those shows that's easy to just throw on when you're busy doing something else.

I've had a nice reprieve from all of the tv however, in that I've found a new album that I am loving! I haven't enjoyed an entire album since my Dave Matthews days, or maybe even since the very first Maroon 5 album (Songs About Jane) came out. Anything else that Maroon 5 has released has been garbage in my opinion. Back to my current favorite - it's Elton John Revamp.

As you can see, it is a tribute album to Elton John with covers by other artists. Shout out to one of my bff's, Justin, for letting me know about it. We're loving it for playing outside, or cleaning the house. Florence Welch's voice singing Tiny Dancer, with her weird, ethereal harps etc, is heaven. 

That's all from me, as I now need to talk my toddler into getting dressed and grocery shopping with me. At some point in her being sick, or turning two, there's been a major power shift in this house. I embrace it for all of its cuteness and ridiculousness, though. Show your independence, girlfriend. It just might mean that I'll be having a drink after she goes to bed most nights. 

Until next time, Luci XO 

Cystic Fibrosis: Small Things That Help

Several times now, I have started, then deleted posts on keeping weight on my two year old; along with getting her Cystic Fibrosis diagnosis. The truth is that we are living by the day, and just doing our very best. I will eventually share more about her diagnosis, and most importantly how it positively affected me emotionally (after first having a major negative effect). As for her high calorie diet, it is so consuming, that to sit down and write about it, is overwhelming. More than I expected. It seems like second nature to me, and maybe that’s just it: it’s simply become a reflex; some days a motion that I go through. That all said, I couldn’t think of anything else that I could be so grateful for. I have this magical little girl that counts on me to keep her healthy and fed, and I couldn’t be happier to do so. 

Some of the little things that I always keep in mind or that might be helpful to somebody out there, raising a CF baby: 

At almost 2 years old, I try to aim for 1,100 calories a day. I can promise you, that we almost never make it, but it gets us close by aiming for it. There are tons of resources online for what your toddler’s caloric needs are, specific health needs or not. In our case, at around 24lbs, 1100 seems to be the magic number. Lyla had a cold over Christmas time, as kids tend to get, and while her lungs stayed in good shape (hallelujah!!), she was sleeping a ton, and essentially sleeping though a mealtime. The timing of this, and the effect on her weight, was reflected as either losing weight/or not gaining between clinic appointments. Therefore, January and February were basically spent getting her weight back on track. Somehow, we were successful. What a good feeling. There was no trick to it, just feeding her often and feeding her rich foods. If I find something that she likes, I go with it. Lyla isn’t the healthiest eater, and I’m totally fine with that. Toddlers can be picky. We're all happier when we just surrender to that fact. And no, my toddler doesn’t really like advocado, so don’t bother suggesting it. Can you tell how much I love unsolicited advice? ...as I write a post veiled as “tips and tricks”...this is called hypocrisy irony. 

Pediasure is our best friend around here. Lyla has a RX for the 1.5 ready-to-use cans, which are 350 calories/serving (8 oz). She'll drink between 2-3 of those per day. You'll notice that I mentioned her prescription. If you have a child with specific dietary needs, ask your resources what your options are. I love pediasure for so many reasons, but especially the protein, vitamins and minerals, and the iron; I also appreciate the fact that it makes counting her calories so easy. We're also big on peanut butter around here. Lyla loves it on waffles, and sometimes just big scoop on a spoon. 

Lyla's pancreas doesn't process fats or protein without the help of her enzymes, but she can eat certain things without them. When we need a quick snack, pretzels and fruit are great, along with white grape juice. I prefer her not to have juice, but white grape has a lot of calories, so she gets it, and she loves it. It just means that I try to be more diligent about keeping her teeth brushed. Back to the enzymes, I have found that anything with less than 1.5 grams of fat, can be processed without enzymes, and therefore without problems. This is what works for us. Every CF patient is unique. However, at her age, being Delta F508, and seeming to have more digestive issues than respiratory (again hallelujah!!), this is what works for my girl. 

This is something that I've mentioned a ton via social media, but if you're new here, we live for our vibrating vest. Literally live for it. It has kept Lyla incredibly healthy. We happen to see a pediatric pulmonologist who really advocates for getting a vest on your CF baby as early as possible, which is rare. Typically, a vest will be introduced around 2-3 years old. We started at 7 months, and have rarely missed a treatment. I've never been so disciplined in my life, truly. Now, does Lyla love to sit still twice a day to do her vest therapy? No, not really. She does know her routine though, which is another benefit of having started this so early. She doesn't know any other way. I cannot even imagine trying to get her used to this now, at her age. She runs from me when I try to comb her hair. If you're curious about what it's specifically for, I usually explain her vest therapy like this: Lyla's body processes sodium differently than say I might, and it results in the mucous in her body being somewhat "dehydrated" therefore leaving it thick and sticky. That thick and sticky mucous can settle easily in the lungs, and not want to come out. This is how infections start, and this is what essentially makes Cystic Fibrosis fatal, in some cases. So, the vest keeps that mucous lose. Simple as that. That's not a technical description of how CF works, but it's how I think of it. As for her pancreas, a gateway is closed off, and I still don't understand anything after that, even though my husband has explained it a billion times. I do know that it's basically the opposite "side" of what can cause diabetes.* All I know, is that she needs to eat. A lot. 

*that said, diabetes can become a concern for CF patients, along with liver problems. My head just exploded everywhere, while I was thinking about how that can also happen. Like, just brains and tears everywhere. The good news is that nowadays, these wonderful doctors and clinics know that this can happen, and do a lot to make sure that it doesn't. 

Whew. 

Ok, so one more thing, because I would love to get a shower before Miss Thang gets up... don't let this scare you, don't let this make you think that I'm exhausted or overwhelmed 24/7, and please don't feel sorry for Lyla. We all lead a beautiful life because of her, and it's an incredible time in science, if you have something like CF. We have lots of hope for Lyla, and will make sure that she has it in herself. This is just our little reality here, and if it gives someone out there comfort or answers, that's all that I could ask for. 

Thanks for reading, Luci (and Lyla XO) 

Blonde Moments

Again, another "this and that" kind of post. This seems to sync up well with my mind these days, so let's get to it, shall we

TV 

As much I have to say about TV, I'm actually quite tired of it. As long as the weather is chilly though, it's just easy. Note to self: test drive some books or podcasts. 

VPR: 

It's really just a show of incredibly attractive gas lighters. We've been loving the old episodes at night, when we need to decompress. 

RHOBH: 

OMG snore. Why do I keep watching? It's like I don't know when to give up. I do love tuning in for the haute couture and the lifestyle. RHONY starts back up tonight, and I'm strangely not that excited. if you read this blog, though, then you probably already have your VCR set up with a freshly rewound cassette tape.  The housewives just haven't been doing it for me, lately. I'm sorry, who am I? 

I don't think I'll have a choice, but to watch the new Jersey Shore. Someone in this house is a huge fan. It's not me, the toddler, or the puppy dog. It never did much for me. Of course, back when it started, and was really popular, I didn't need mindless entertainment, so I might actually enjoy it. 

Other: 

I decided to start watching Justified, via Amazon Prime (free streaming), because I decided that I really like Timothy Elephant (SIC) as an actor. I'm loving it so far. It reminds me of a modern Western, a genre that I always enjoy. 

MATERIAL GIRL 

I was recently drinking and shopping with friends at the King of Prussia mall. It really was a dream scenario. We made our way into Henri Bendel. I'd seen the bags and accessories before, but never in the store. It was love at first sight. I truly loved everything that I saw in person. We also went into Louis Vuitton and Burberry, and save for a Burberry trench with hot pink piping that I'll never own but found to be beyond gorgeous, that was just more for fun. The Henri Bendel merch was a tad more attainable, however, as in I would consider asking for it for Christmas or birthday. 

When we were planning our wedding, my mother-in-law (whom I consider a wonderful friend) did our flowers and helped with a lot of the decorative touches. She, along with her friends, dubbed my style "classic with a twist" and I'd say that's still pretty accurate. Give me everything in black, but throw some stripes or a pop of color in there. That's kind of what the Henri Bendel products remind me of. 

Here are some of my Henri Bendel favorites:

Backpack in "tea green" (link) 

Fantasy metallic linear earring in "purple" (link) 

HOME

Speaking of "classic with a twist," I am crazy for the home decor trend of all white everything (walls, ceilings, most of the furniture), and bright accents throughout. I am always scouring Pinterest or watching HGTV, to get ideas. I just can never get enough of anything home decor related. That said, I'm no expert, but I know what I like, and think of making our house a home as the most fun little hobby.

Ladies of London's Caroline Stanburry's home in Dubai. Do you know of her? Is she not the most fabulous?! Andy Cohen, if you're reading this (and I know that you aren't), we need more Ladies of London, please. 

You guessed it, this is via Pottery Barn Kids. I think that everything about this room is perfection. It's not terribly different from Lyla's room now, actually. 

LIFESTYLE 

Holiday weekends kick my ass. They just do. Well, vacations do too, so needless to say, I am off of the summer bod wagon. I've been off of it since like 2015. I'll get it back in gear, but it's true that it's harder as you get older. My husband brought up the idea of us trying a keto lifestyle. He's never once mentioned any kind of change in eating seriously, so he might be onto something. I understand that it takes some serious commitment, and I'm not really one to drastically ever change my diet, because I don't think that it's mentally good to worry so much about it. Usually, I'll cut out junk and work out more when I need to.. but it's caught up with me. We could use a good reset around here, and relearn some better habits. So, anyone out there done it or have any keto tips? For me to be successful at something like this, I need ALL of the information. Until we dive into it, I'll be obsessively researching keto. 

Until next time XO