Tuesday, June 28, 2011

Well That Was A First

This post is partially about poop.  If you are squeamish, turn back now.

Are you still here?  Good!

Today was Judith's first official blowout.  I'm glad it wasn't a massive one, but it was still a panic-stricken moment nonetheless!

For some reason, the little peanut decided it would be an awesome idea to take 2 big dumps in a half hour time frame.  She pooped during her noon solids (like she does most days - sometimes I don't bother changing her diaper before eating like I normally do because I'm cheap and don't want to waste too many sposies), I changed her, and got her dressed again.  She didn't take a whole lot from her bottle, but she also ate about 2 oz of pureed carrots.  I thought, "Ok, she should still take a bit more from her bottle, but if she's full I'll let it go."

She was building up for the grand finale.

Fast forward a half an hour, and I had just finished up my lunch and was on hold (again) for a ridiculously long amount of time trying to work out another medical billing issue.  I picked Judith up because she was fussy, and happened to feel moisture around her left thigh.  I thought maybe she peed out of the dipe because I didn't have the ruffles out or something.  My second thought was maybe I shifted her dipe in a weird way when I was bouncing her on my thigh.  So I picked her up and checked things out.  I was promptly greeted by a nice, brown stain.


I peeked inside the leg of her romper, and there was poop smeared on the romper and leaking out of the diaper.  I did a quick inspection of my hands and leg (no poop there thank God!), and rushed her upstairs, phone in hand, crappy elevator music accompanying us.  I had some sample packs of disposable Huggies changing pads, so I ripped one open and put that over the changing pad cover before putting Judith down on it.

The kid was a mess, but it was contained to her legs.  I used 984921382466978432166735 wipes on her and the romper, and put the new diaper on.  I decided against putting her in another romper in case she decided to go for dump #3 and potential blowout #2 (haha - see what I did there?), and put her in a onesie.  By this point I was beyond caring that it was a PT day, and scrapped her looking a little nicer for the practicality of preventing another possible ruined romper.

I put the outfit in the tub with some cold water and called my mom to ask how to get poop stains out of clothes.  Thank God for Oxyclean!  My mom suggested I soak it in water with some oxyclean, so I read the directions and got it set up.  After a 5 hour soak, I washed the romper with more Oxyclean, and success!  There is only a faint stain on the romper, mostly contained to the elastic band!  Woot!

We have 2 new doggie obsessions in our house: both Buster and Lady have laid claim to the Moses basket (Buster was in it just this morning), and Lady is completely obsessed with Judith's percussor.  The dog hears the clapping noise it makes and freakin' stalks it for the entire time I do Judith's CPT.  The dog is flat.out.nuts!  She absolutely thinks it's a toy for her, and will stare at it, prance/dance on the bed, and has gone as far as making yelping noises and licking it while I do the therapy.  She's tried taking it a couple times, but knows better than to run off with it.  Crazy dog!

Thursday, June 23, 2011

Massive Relief!

I (finally) got a call from the county public assistance office about Judith's medical assistance.  Long story short, we sent the application back in April after the initial diagnosis, because CF patients will automatically qualify for coverage (the cost of meds, treatments, etc. is astronomical).  When you apply for MA, you get retroactive coverage for up to 3 months prior to the initial application.  That means Judith qualifies as of the beginning of this year.

Know what that means?  MA will be paying for a little more than half of Judith's NICU bills!  What a relief!  We're now trimming almost $5,000 worth of bills significantly.  I don't know how much we'll be responsible for in the end, but thank God it won't be nearly as much as we're looking at right now (and we'll be able to get it paid off sooner).  I'm actually still kicking myself for not applying after she was born - I think I was still in shock, and wasn't thinking realistically about what everything would cost.  But at least we're able to get something.

Saturday, June 18, 2011

Random Saturday Musings

I am currently watching Man v. Food Nation on the Travel Channel, and all of the pizza talk is making me insanely hungry for a really good pizza.  Not the crazy spicy one they're showing, but a good, NY style pizza.

Judith is finally napping.  She's flying between a really good mood to being super cranky and waking up every 10 minutes.  We're in a long stretch right now, and I don't want to jinx it.  She'll probably be up in less than a half hour anyway, ready to eat.

Speaking of eating, Judith tried more solids over the past couple weeks!  Her list of foods she can eat includes apples, bananas, sweet potatoes, and peaches.  I had to start adding cereal to all of her purees, per her pulmonologist, so we can be sure she's getting enough calories from everything.  The dreaded rice cereal made a comeback, but now that it's masked in something else the hatred isn't as intense.  I want to get some oatmeal and try mixing that in with the fruits, especially once we start giving her 2 solid meals a day, so she has a little more variety.

Lady has claimed yet another thing as her own.  This is the dog that slept for a grand total of 1 night in her dog bed (their first night here after their adoption was finalized), and the next night decided that she is allowed to sleep in our bed.  She loves the blankets on the floor, but didn't blink an eye when I had to pack up their dog bed for space reasons.  Well, guess who has a new dog bed?  Yep - Lady has now claimed Judith's moses basket as her personal space.  Earlier this week, I came upstairs to change Judith, and Lady was curled up in the basket, snoozing away.  She's laid in there quite a few times since.  The real kicker is we could go out and buy her her own basket-style dog bed (or any other type of dog bed for that matter), and she wouldn't use it.  But because the moses basket belongs to one of Lady's humans, the little snot decided to declare it "hers."  Hello, Boston Terrier property laws!

Thursday, June 16, 2011

CF Treatments

I'd like to do another educational post of sorts, and tell you about the treatments Judith needs to have daily for her CF.

Twice a day, at her 6 AM & 6 PM feeds, Judith receives 2 puffs of Albuterol from an inhaler.  This is to open up her airways so she can breathe easier.  So far, we have not had to use a nebulizer (knock on wood), but I know that there's always the possibility that she will need one in the future.  Judith doesn't really mind the inhaled meds, and will often talk to us through her spacer.

The fun part (and I use the word "fun" loosely) is her twice daily CPT treatments.  CPT stands for Chest Physiotherapy (some people will refer to it as Chest PT), and this is the act of moving the mucous from the small airways to the large airways so Judith can cough it up.  It also prevents the mucous from sitting in the lungs and festering, which would cause lung-damaging infections.  This is not a treatment that will go away over time; in fact, this is a treatment that must be done daily no matter what, and will have to increase in frequency whenever she's sick.

This therapy may be something you're familiar with, or may be something you think of when you hear "cystic fibrosis": it's the treatment where someone claps on the lungs with a cupped hand or a special percussor (kind of looks like an air hockey paddle, but with a concave middle on the underside).  It can be done manually, or it can be done through a special vest.  We have to do it manually for now, because Judith isn't nearly big enough for the vest!

So every day, twice a day, Judith and I go through her CPT.  There are 3 "zones" (that's what I like to think of them as) that get the treatment, front and back: the upper chest, the middle chest, and the lower chest.  In each of these "zones," there are 2 areas that need to be percussed: 1 on the left, and 1 on the right.  Judith has to lay or sit a certain way while each area is being treated.  Keeping her in the proper position is the trickiest part right now - she's way more interested in rolling around!  I'm waiting to see what's going to happen when she's mobile and can crawl away.  The whole process is going to remain interesting until she's old enough to understand things!

I know this wasn't the most interesting thing I've posted, so if you managed to make it through this you deserve a cupcake!

Tuesday, June 14, 2011

Well, We Got an Answer

But not one I was hoping for.

We got the results of Judith's genetic screen, and they couldn't find the second mutation.  Yep, you read that right - no second mutation turned up.  Apparently, this can happen in about 3-5% of CF cases, so while not common, it's also not unheard of.  Go figure she would fall in that 3-5% - this little peanut certainly likes to do things differently.

We do know that DF508 is present; that was already semi-confirmed with the newborn screen, and was definitely confirmed through this test.  So I'm figuring that my mutation either A.) just didn't show up or B.) is a mutation that isn't recognized yet.  Her pulmonologist didn't come out and "label" her case as DF508 dominant, but I believe we're going to treat it like that is the presenting mutation.  I was really hoping that we could find out what the exact mutation is so we would have a ballpark idea about how mild or severe the disease could be, but we'll never know based off of these results.

I am disappointed and bummed that we don't have more concrete answers (if anything medical can ever be concrete), but I'll learn to live with this just like I've learned to live with everything else that's been thrown my way in the last almost-6 1/2 months.

The good news?  Judith will not need another sweat test.  Ever!  Her numbers were much more conclusive today - they weren't super high, but they're high enough in the range for a positive diagnosis that we can confirm everything.  Last time, her numbers came back at 61 & 62; today, her numbers were 64 & 65.  She'll be receiving another chest x-ray after her next visit to see how things look.  We also have the pleasure of collecting another poop sample to check her pancreatic functions.  It was such a blast last time that I'm so looking forward to scraping her poo into a tiny plastic cup using a wooden tongue depressor and having the cup sitting in the door of the freezer until I can get it to the lab.  *note: insert sarcasm font into previous sentence*  Fun times.

Sunday, June 12, 2011

Can We Get Some Answers?

I want the answer to this question to be yes.  We have our next appointment at Hershey on Tuesday.  Judith will need a repeat sweat test (oh goody - I feel so bad that she has to go through this a 3rd time), and then another follow-up with her pulmonologist.  I'm hoping that they have the results of her genetic screening back, and we can find out what her exact CF mutation is.  We should also be able to get some clues as to what mutation I'm carrying.

We already know Judith carries DF508 (delta f 508), the most common CF mutation out there.  This is what the newborn screen detected, and I'm pretty sure this is the mutation John carries (well, we know I don't carry it, so it had to come from somewhere).  I don't think there's a way to predict how the disease will impact any one person, but we may be able to get an idea on how severe her case may be based off the mutation she carries...at least this is what I'm hoping for.

I'm getting better dealing with unknowns, and that's one advantage that came out of dealing with a preemie in the NICU for 9 weeks.  But the unknowns still drive me nuts.  I hate not knowing what's going on, and I get frustrated when I can't find answers to my questions through the things I research.  I'll be blunt and say that I avoid Dr. Google like the plague after learning my lesson when Judith had her NEC scare early on in her NICU stay, but I have this urge to read more about CF and it's hard to find reputable sites that aren't going to scare the living s*** out of me.  I guess it's time to start looking for more books to read, since I've pretty much exhausted the one we got from the CF clinic.

Monday, June 6, 2011

6 Month Stats

Judith had her 6 month well baby visit (and shots) today, and I have some updated stats:

Weight: 12 lbs 6 oz (holy crap - that's a pound more than 2 weeks ago!)
Length: 22 1/4"

She's in the 3rd percentile for her actual age in weight, and the 25th percentile for her adjusted age in weight.  She's still not on the chart for length, but she's getting close!

We have to stay on the NeoSure for another 2 1/2 months, until she is 6 months adjusted.  Then we'll more than likely be able to make the switch to regular Similac...and can start saving a bit of money on formula!

We're also going to work on weaning her from the Zantac - her pedi didn't want to increase the dose since she's doing well with the current dosage, and we want to see if she's able to outgrow it so we can stop altogether.  Really, she has been doing quite well with the reflux.  There's usually a day every 1-2 weeks where she's spitting up a bit with every feed, and is in a bit of pain, but that's a great improvement over how it was when she first came home!

In other news, we're on day 3 of bananas, and Judith is really enjoying them!  I have enough left for 1 more day, so I believe we'll move on to a veggie starting Wednesday.

I'm a tad sad: my peony plant didn't bloom very long this year, and it took a while for it to open because of the weather (there were definitely plenty of ants to do their thing, but they took off and hid when it got so cool again a few weeks ago).  Unfortunately I didn't get outside to take pictures this year (fail for me), but the blooms were gorgeous!  My phlox is coming up, and that should start blooming within the next month or so.

Friday, June 3, 2011

6 Months!

Judith, you are 6 months old today!  You're halfway to 1, and I'm not 100% sure how I feel about that - you're growing up, and time is moving so fast!

Here are some highlights from the last month:

* You have more than a month of CF meds and treatments under your belt.  You take your inhaler well, and you like to "talk" to us through the mask of the spacer.  You didn't notice the change in your vitamins, and take them fine in your formula.  You enjoy the extra salt added to your bottles!  The one thing you hate the most is your CPT - one day you'll accept that it has to be done, but for now you don't always understand why we have to do it.

* You started eating solid foods!

* You are babbling up a storm, you are rolling over (mostly from your back to your tummy), and can pick up/hold up your head for longer periods.

* You're noticing the dogs, and enjoy watching what they do!  Lady's hyperactivity scares you a little bit - I don't think you know what to make of it yet, but in a few short months I have a feeling you'll be giggling constantly at her antics!  You discovered that Buster's fur is soft, and that he's kind of squishy feeling (sorry for the description, Boo!), and you like to touch him.

* You went to your first ever Conrail Historical Society Rail-B-Q!  You met Brock, Kim, & Gabby for the first time, and also got to meet many of the other members of the society!

* Mommy celebrated her first Mother's Day with you!  We went to church at Mt. Calvary United Methodist in Harrisburg - this is the church Daddy used to play at while he was in college (and right after he graduated).  People were excited to meet you!

* You went to your baby shower at Daddy's work, and got to meet his co-workers!

Judith's 6 Month Stats:
Adjusted Age: 3 months, 2 weeks, 4 days
Weight: 11 lbs 5 oz (as of 5/24/11)
Length: 22.25" (as of 5/24/11)
Hair Color: You're going to keep that a mystery for a while, aren't you?  :)  No changes in the last month, except there's slightly more coverage.
Eye Color: no change from last month - they're still a grayish blue.
Clothing Size: You are still wearing 0-3 month clothing, and have plenty of room to grow into your rompers!  Because of your length, some of your pajamas with feet in them are becoming a bit snug.
Diaper Size: Size 1
Feedings: You eat 6 times a day.  In each bottle, you get about 4 oz of NeoSure.  You usually take about 4 oz, but will sometimes take only 3.5.  You also started eating some solids!  You get 1 solid meal, and it's mostly for play/exploration, not nutrition (yet).  You absolutely HATED rice cereal, so we skipped over that stuff and moved right to apples.  You enjoyed them, and had bananas for the first time today (you seemed to enjoy the bananas, so we may have a winner there).
Developmental Milestones: You are doing a lot of new things!  You roll consistently from your back to your tummy, and can roll from your tummy to your back occasionally.  You can sit up with support, and enjoy time in your infant rocker seat, your bumbo, and your exersaucer.  You babble up a storm: you're cooing a lot, and you began shrieking in excitement the other day!  You noticed your feet exist, but haven't grabbed them yet.  You like to hold your bottle, and will often help guide it to your mouth.  You're very alert and curious, and like watching/looking at new things, especially those with lots of color.  You apparently like watching the weather on TV - you don't discriminate between the local weather on WGAL or the AccuWeather channel, or the national weather on The Weather Channel, and you get excited when they show the radars.

Happy half-birthday, little Peanut!