Saturday, December 31, 2011

Good Riddance, 2011

It's New Year's eve, and we're staring 2012 in the face.  This past year has been one of the biggest roller coasters of my life, and probably John's life, with plenty of shitty moments.  But the year also had some positives, so it wasn't a complete loss.

I'll spare you all of the long, drawn out details - it's not necessary to post lengthy descriptions when the evidence is in my blog archive toward the bottom (so for my newer readers, feel free to click through past posts and check stuff out).  I will, however, offer the "Campbell's Soup," or condensed version of things.  So (drumroll, please), here is our 2011 Year in Review:

* Judith continued to thrive (even through that GBS infection), and was discharged from the NICU after a harrowing 9 week journey

* We survived our first RSV season without incident, and avoided illness the rest of that winter

* Judith was shuttled around to numerous specialists, and discharged from the majority of them

* We went to 2 NICU Developmental Clinics, and they caught the torticollis and developmental delays early, contacting Early Intervention for consults and services

* Judith has received EI services (PT) for the better part of the year, and it has done wonders to catch her up

* 3 sweat tests later, we got the firm diagnosis of Cystic Fibrosis, adding yet another crazy loop into our lives.  We know she has the DF 508 mutation, but still don't know (and won't know until the lab panel is expanded again, and even then it's iffy) what the 2nd mutation is.

* Judith & I went to a bunch of amazing get togethers with my awesome mommy friends that I met online!  It was fantastic to meet these ladies in person, and I can't wait for more GTGs in 2012!

* As we discovered early on, Judith likes to do things differently, off-track from what "normal" kids do.  We're monitoring her eyes for the bad vision genes I managed to pass down to her, and discovered that, unlike most preemies that suffered from ROP, she's far-sighted and will need glasses much sooner than we expected.  However, she dodged the bullet and avoided them all of this year, but I doubt she'll get much luckier with that in the upcoming year.

* Our 2 wonderful NEBTR rescues are getting older, and both celebrated their 6th birthdays.  They still bring us lots of joy, provide us with tons of entertainment, and most importantly, they welcomed Judith into our family and are very protective of her.

* Despite everything stacked against her, Judith is thriving and developing, and has grown into an adorable toddler!  I am amazed at her progress, and I can't wait to see how she continues to develop in 2012!


I am looking forward to some things in 2012:

* I can't wait to see how Judith will interact with everyone as she gains/improves upon her skills.  She already loves the dogs, but I'm also excited to teach her how to interact with them respectfully, properly, and safely so she doesn't hurt them (or them, her).

* Judith will hit 22 lbs sometime in the upcoming months, and I am looking forward to having the conversation about getting The Vest to use for her daily CPT regime.  It will help save our hands, and it will also make it easier in the long run for her to learn how to be independent with her treatments/do them herself (even though that's years away, but why not build the foundations early?).

* More GTGs and play dates with our friends!


I'd love to see surprises being kept to a minimum this year, and we can have a quieter year than 2011.  Here's to hoping for a healthy, happy 2012!

Wednesday, December 28, 2011

Christmas 2011 (lots of pictures included!)

I finally have some time to share our pictures from Christmas!

We had a great Christmas Eve - it was so nice having Judith home this year, and I was super excited to take some pics of her all decked out in her holiday finest!

You can't make me smile.


nom nom nom!

Wait, you're not supposed to eat shoes?


I'm surprised at how well Judith did throughout the service, considering I took her to the middle (7:30) service, and that fell during her normal bedtime.  She had a meltdown during the preludes because I wasn't around, but after I rang the bell piece I went back to her godfather and calmed her down.  She was great for the rest of the night, and fell asleep right after communion.

Christmas Day we skipped out on services since we had Judith out so late Christmas Eve (we took 1 car to church to help save gas, and we didn't get home until a little after 1 - Judith did sleep at church though, so she wasn't completely off schedule).  My grandparents came up in the morning to help me get Christmas dinner started, and they had fun playing with Judith:


Judith had fun with her great-grandparents, and also had fun sticking her hand in the dogs' water bowl and splashing around.  That happened twice that day, and both times she soaked her cute Christmas jammies.  Silly girl.

Anyway, after chowing down on an amazing dinner of ham, mashed potatoes, and green bean casserole, we opened presents:





Check out this big girl standing all by herself, no support!





Judith got so many awesome gifts!  A bunch of stuffed animals were included, and now it seems the zoo is officially full.  She also got some great onesies, a bunch of new books (including some Olivia books - I love it!), and some money for her savings account.  She has so much stuff that's new, and she can't make up her mind what to play with at any given time haha!

John & I also got some great gifts.  He got a Canon PowerShot (in a nice blue, close to Conrail blue haha!) so he can take pictures, and shoot some video that we can actually upload to the computer - his video camera is ancient, and we can't get the connector cables anymore, so it'll be nice to be able to post videos every now and then.  He's also going to get some DVDs that he wants, along with some new music.

I am enjoying my early Christmas gift of a Canon 50mm f/1.8 lens for my camera (that's what I took all of these pictures with), and I got the Nintendo 3DS that I wanted, along with 2 games: Super Mario 3D Land and Mario Kart 7!  The 3D part is what's taking the longest to get used to, and right now I have a very shallow depth set until my eyes adjust.  I'm also enjoying the circle pad - it's a feature I've been looking forward to having on a handheld.  I'm enjoying the games so far, and I can't wait for the new Animal Crossing and Paper Mario to finally be released!

We're thankful that we had such a great and semi-relaxing holiday this year!

Tuesday, December 27, 2011

Sinus Infection

This is but the latest diagnosis in the string of things Judith has had wrong in the last month.  I wish my poor toddler would just be healthy for a full month.  I'm really beginning to hate winter.

That cough that's been lingering for the last month or so came back full-force this weekend.  She was coughing a bit Christmas Day, but by yesterday it was sounding wetter.  Overnight, she was so congested, and the cough was so wet sounding that we decided not to wait and called the pediatrician.

The whole day was one giant cluster eff: Judith's regular pediatrician was out of the office today, so we saw a different one - I was nervous about this, because we haven't seen anyone else, but he was truly awesome and had a good idea about everything (so I won't hesitate to request him again if Judith's regular doc isn't available!).  Then I tried calling Hershey to see what the pulmonologist would want us to do, and neither he or the nurse coordinator were there.  Cue some very minor frustration for me, but I knew we'd get through everything (albeit slowly).

The pediatrician looked Judith over, removed some wax from her ear, and diagnosed her with the sinus infection.  Thank goodness her lungs sounded relatively good, and the infection hasn't moved to her lower respiratory area!  We were at the office for a good hour: that included the exam, the call to Hershey to set up a course of treatment, and figuring out which pharmacies in the area would carry the antibiotic we need to give Judith.

After the appointment, I had to drive to a different pharmacy than the one we normally use to pick up the antibiotic.  I really was not thrilled with them, and it took them twice as long to fill it as it would have at CVS.  Top it off with the cold rain that decided to start, and I wasn't in the best of moods.  At least we got it though, and hopefully it'll do the trick.

So in addition to the antibiotic twice a day, we have to increase her inhaled meds and her CPT to 5 times a day.  Yep, that's right: 5 times of manual CPT for the next 10 days.  Trust me: I'll do whatever necessary to prevent the infection from developing elsewhere in her lungs, but it would be so much easier to do this with the vest (Judith has 4.5 lbs to go until she reaches the minimum weight, so hopefully we can start talking about that soon).  Hopefully Judith will start to feel better in the next day or 2, and we can wave goodbye to this crap for a while.

Saturday, December 24, 2011

It's A Christmas Eve Update!

I know I haven't been around much in the last week.  Things have been a little busy with rehearsals and getting things ready for Christmas.  My birthday was on Sunday, and I've been enjoying my gifts!  I got a new winter coat from my parents, and bought a new camera lens plus all 7 Harry Potter books with the money from my in-laws (well, part of that was Christmas money too, so I treated myself early!).  So between taking pictures with my new lens, taking care of Judith and the dogs, and burying my nose in books, I lost track of time and forgot to post!

I have to say that I've been enjoying the Harry Potter books immensely!  Believe it or not, I never read them before now (I was kind of bucking the trend for quite a while), and in retrospect that was one of the dumbest things I've done.  Thanks to many of my awesome mommy friends constantly talking about the books and movies, I finally caved and began reading them.  I'm hooked!  I'm getting ready to start the 4th book, and can't wait to get the movies with the rest of my birthday money!  I'm still kicking myself a bit for not reading these sooner (I had a major "WTF self?!" moment after reading the first chapter in book 1), but I'm glad that I'm remedying the error of my ways now!  Hopefully once Judith gets older, she'll decide to read the books herself, and will enjoy them as much as I am enjoying them!

One source of frustration this week has been with the sippy cup.  When Judith was sick last week, we didn't force the sippy on her as much and just gave her the bottle - that way she could use her energy to fight off the virus rather than burn the calories fussing about the sippy.  As a result, we had some minor regression.  So this week I was working with her to get her back to where she was.  She was only taking maybe an ounce or 2 at a time from the straw sippy, and I kept second-guessing our decision to keep working on transitioning/dropping bottles (as a side note, it's not the sucking part that she's having problems with - she can get liquid through the straw fine.  It's the intake that was concerning me).  For some odd reason, I decided to give the soft spout sippy another try, and the little stinker took to that right away!  The past couple of days, she's downed at least 2-3 ounces with each meal.  Talk about easing up on the frustration!  I'm thrilled that she likes it, and while shopping with my mom yesterday we picked up 2 more cups - 10 oz size this time, so we can fit an entire can of Pediasure in it.

We also had a surprise this week: remember when I mentioned before about Judith getting ready to cut one of her upper teeth?  The one right beside the upper front left tooth?  Well, it cut through, and the surprise part is the tooth in the same spot, but on the right side also cut at the same time!  When I felt/looked at her gums, that tooth definitely did not feel like it was anywhere close to emerging, but after a quick swipe I noticed it was there!  Her total tooth count is 5, and the final upper front tooth feels like it will come through in the next week or 2.

I am getting excited for tomorrow!  I know Judith probably won't be super enthusiastic about Christmas this year, but I can't wait to see her open her presents!  This year is a far cry from Christmas last year, and John & I are grateful that we can celebrate Christmas at home with our beautiful little girl.


John, Judith, Buster, Lady, & I would like to wish all of you a very Merry Christmas and a joyous holiday season!

Saturday, December 17, 2011

Dogs

Our two lovely BTs are very well fed these days.  Not that they didn't eat well before, but the extra handouts are definitely a regular occurrence anymore.

Judith has figured out how to feed the dogs, and I have to be extra careful what I give her now so I can be sure Buster & Lady don't eat something that could be poisonous/toxic.  I knew this day was coming.  Judith actually looks for them, will hold something out and babble or laugh at them, then proceed to eat it herself.  I'm not wild about her teasing them, and try redirecting her.  After a couple rounds of this game, she proceeds to either throw food over the side of the high chair to the floor (Buster's always first in line for handouts - he's such a foodie), or will hold the food and dangle her hand over the side where the dogs lick the food out of her grasp.

She thinks this is the most hilarious thing in the world.

I'm just glad she's feeling better and is back to her normal antics.

Thursday, December 15, 2011

Update

It's been an interesting past couple of days.

I worked yesterday, so my mom came up to watch Judith (John also had a day off, but went to the church most of the day to get ready for Christmas services and whatnot).  She threw up everything she had that morning, and still wasn't herself.  So by the afternoon, I decided to take her to her pedi and get checked out.

Everything was generally looking ok, except she had a fever and her lungs sounded a little crackly when she was laying down.  Her doc said she more than likely was fighting off a virus, and took a swab of her nose to check for bigger problems (like RSV, flu, etc.).

Today her fever seemed to be breaking (yay!), but she started to get the squirts, and they were really mucousy.  I put a call in to her pulmonologist to make sure it wasn't antibiotic related, and he also said it sounds like a virus, so we could stop the antibiotics since she already had 2 rounds prior to this.  This afternoon, I got the call from the pedi that Judith's nasal swab was negative for more major viruses (another yay!).  So we could still be looking at a cold, or she may have picked up a rotavirus infection.  Whatever it is, it seems to be working itself out of her system, and I hope she'll be in better shape by this weekend.  In the meantime, we'll keep doing her CPT 3-4 times a day as needed, and we increased her Albuterol to help keep her airways open - hopefully that will prevent anything bad from setting up shop in her lungs!

Tuesday, December 13, 2011

Sharing

We're learning to share in our house this week!  /sarcasm

It's official: Judith caught the cold that John & I have.  ::sigh::  This isn't unexpected, but the timing is what threw me for a loop.

She was a little more "off" today, but I was chalking it up to the possible growth spurt.  I kind of brushed off some of the other signs, because they're so typical for a Tuesday around here: disinterest in her lunch, wanting Pediasure more than the food, fussy before therapy, etc.  She was fussy during therapy today, and she hasn't been that way for a while - normally she's fussy at the end because she wants a nap after all of that work.  Today, though, I put her on my lap and she snuggled into me and noticed her forehead felt warm.  As soon as we finished up, I headed upstairs (like normal - she'll usually take a good nap when she's done) and took her temp.

100.2

Crap.

I put a call in to the clinic and talked to the nurse coordinator about what we should do.  She took a record of everything I noticed (Judith's temp, symptoms, that sort of stuff) and passed it on to the doctor.  She called back after a bit and said that the doc would phone in a prescription for another antibiotic, and that it sounds like Judith has another virus she's fighting off.  She also told me that we could take Judith to her regular pedi to get checked out if it would make us feel better, and I asked if we could wait a day or 2 since we were starting the antibiotics.  Thankfully she said that would be ok, but also gave us some signs to look for that would indicate Judith was getting sicker.

So now we're on round 3 of antibiotics (bactrum again), we're increasing CPT, and we're to give her Tylenol to help with the fever.  Currently, Judith is sleeping off whatever is invading her system.  While it's nice to have some quite time, I'd rather have it because she's healthy and it's bedtime.

I have a feeling it's going to be a long winter...

Monday, December 12, 2011

Tis the Season

I have a love-hate relationship with this time of year.  I love the holidays (having 2 birthdays to celebrate - mine and Judith's - helps too... as much of a pain as gift buying can be haha!), but I despise the germs.  It's turning into an interesting time when we're out in public, and it's going to get super interesting at home now that it seems like both John & I are getting colds.  I'm really hoping that Judith will have some protection since she just finished round 2 of antibiotics on Saturday, but we'll have to wait and see.  In the meantime, we're doing extra hand washing/sanitizing, and are trying to keep Judith away from our faces.  Thank God for the Synagis - she'll have some protection with that.  But I can guarantee the first moment I notice any symptoms I'll be on the phone with her pulmonologist to find out what our next step should be.

We finished decorating the house for Christmas on Saturday.  The tree is up and decorated, and looks nice in the corner of the living room!  We haven't had the 6 ft. tree up for a couple years, and it felt good putting it up again.  Judith really hasn't been super interested in touching it, but loves looking at it - so far, the herding away from the tree technique has worked just fine.  We'll see how long that lasts - we intentionally avoided any breakable ornaments this year just in case.

Wednesday, December 7, 2011

Official 1 Year Stats & A General Update

We just got back from the pediatrician's office.  4 shots (Synagis, Hep A, Varicella, & MMR) and 1 blood test later, I have Judith's official 1 year stats!

Weight: 17 lbs 4 oz (5th percentile)
Length: 26.5" (not on the charts yet)
Head Circumference: 17-something" (10th percentile, and I can't remember what it was exactly - mommy brain lol)

Her pediatrician is pleased with everything, and is pleased with her progress!  While we will continue to adjust her age for another year, Judith is catching up nicely!  She's practically caught up to her actual age, and it will be interesting to see how she tests when we go to our next NICU clinic appointment.  We're continuing with the monthly Synagis injections, but unless she gets sick we won't have to go back until her 15 month well-baby appointment.


In other news, I heard from the medical supply company, and Judith's Pediasure will be shipped any day.  I was rather pleased with how fast they contacted me, and was extra pleased when I found out that they could provide us with a variety of flavors!  Judith's really enjoying the stuff, and I'm enjoying having the peace of mind that she's getting the extra calories she needs.

Monday, December 5, 2011

Now That Judith's 1

There are a lot of new and exciting things happening!

First, though, some pictures from Judith's party on Saturday (these are all smash cupcake pics):




Judith's party was good.  She was cranky (a combination of teething, barely napping, and overstimulation), but she did enjoy herself in that way that a 1 year old can.  She got some cute outfits, lots of toys, her own Nativity set, some books, and an Anywhere Chair from Pottery Barn Kids!  The following day (Sunday), she had worship appointments put in at my parents' church in honor of her birthday, and her grandparents, John, & I sponsored the altar flowers at our church - she had 4 beautiful bouquets sitting on the altars, and we got to bring one from our church home.  :)

We're going through some big changes right now.  One of the biggest is she's graduating from formula to Pediasure.  I have 1 can of Neosure left that I just opened this morning, and once that's gone we're done with it!  She needs to be on the Pediasure to keep her calorie consumption up, and thank God that our insurance and her MA will pick up the tab because that stuff's EXPENSIVE (we're talking close to 10 bucks for a 6 pack), and for her it's considered a medical necessity.  I have bad memories of that stuff from when I used to volunteer at S. June Smith center years ago - one of the kids had to drink it, and it smelled so nasty!  It's definitely improved over the years, and now it kind of smells like a McDonald's milkshake.  Anyway, that's going to be her new primary liquid source, and a medical supply company will be delivering it to our door monthly.

I'm still working with her on the sippy cup.  Saturday she took a whole ounce of Pediasure, and I was so excited!  We're making progress, but it's extremely slow progress.  It reminds me a lot of the struggles we went through in the NICU trying to get her to nipple feed, and just like then we'll have to wait for whatever it is to click in her mind before she really takes off with the sippy.

On top of all of these changes, I need to come up with new, possibly creative ways to get Judith's daily salt amount into her.  One thing I'm grateful for is that we don't have to make this transition during the summer months - since it's cooler, she's not going to lose salt as quickly, but we still need to make sure she gets enough to replace what she is losing.

Saturday, December 3, 2011

Happy Birthday, Sweet Little Miracle!

It's your big day, peanut!  You are 1 year old today, and you've come so far in the past year!  We are so proud of you, and of your accomplishments!  You are already growing up so fast!

Judith's 1 year (12 month) Stats:


Adjusted Age: 9 months, 2 weeks, 3 days

Weight:  16 lbs 15 oz (about 8.5 times more than you weighed at birth!)

Length: 27" (you grew 12.75" since you were born!)

Hair & Eye Color: You are starting to grow more hair, and it's still a nice reddish-brown color.  Your eyes are getting more and more brown color in them every day!


Teeth: 3.5 - 1 tooth is almost through the gum, so that's your "half" tooth haha!  You have the 2 bottom teeth that you've had for a while, and just before Thanksgiving you cut the upper front left tooth.  More teeth are queued up under your gums and are ready to make their journey through.


Clothing: You are in a bizarre in-between stage.  You need 6-9m pants and sleepers, but the waist is huge on you.  You can wear 3-6m tops and onesies comfortably.  Your shoe size (when you actually wear and keep shoes on your feet) is a size 2.

Diaper Size: Still in size 3!

Meals: You are on all table foods, and love to feed yourself!  You will allow Mommy to feed you yogurt, but you do like to grab the spoon and try to feed yourself with it.  You take about 20 oz of Neosure every day, but that will change very soon - you will get to try some whole milk, and you will start taking supplements of Pediasure daily.  Most of your liquids are from bottles, but you are learning how to use a straw sippy cup.

Developmental Milestones: You regularly pull yourself up at everything you can.  You can climb the stairs, and you are trying to cruise around rooms.  You learned how to wave, and enjoy waving at the "baby in the mirror."  You can give kisses back when someone kisses your cheek.  You love to babble, and you study everything you can!


Happy birthday, sweet little miracle!

Judith's Birth Story (Part 5)

Friday, December 3, 2010.  A date that will forever have importance in our lives.  Judith was born that morning!

We woke up knowing that Judith was arriving that day.  My c-section was scheduled for around 10:00, and our family, pastor from our church, and the lay parish assistant from my parents' church all arrived at the hospital bright and early to support John and me (my parents' pastor sat with my grandmother since she was unable to make the long trip to Bethlehem).

The mag was shut off in preparation for the surgery, and that was such a relief for me; I didn't feel the effects wear off for a little bit, but it was nice to not have that constant flow anymore.

Naturally, they were running behind in the OR, and I was taken to surgery later than anticipated.  John looked a little silly in the scrubs they gave him, but I was looking forward to seeing his reaction when Judith was born.  I decided that, as much as I would've liked pictures of her birth, it was easier to not have him try to learn to use my camera so he could get shots, and we doubted we'd be able to get any good shots since the NICU team would have to whisk her off to stabilize her.  It's a good thing we didn't plan on it, because it never would've happened anyway.

I was supposed to get a spinal, and once that was placed, John would join me in the OR.  God bless the anesthesiologist: he tried 6 times to place it, but couldn't advance it past my vertebrae for some reason.  So general anesthesia it was, and John was not permitted in the OR.

Judith was born at 11:44 AM, weighing 2 lbs even and measuring 14 1/4" long.  Her Apgar scores were decent for a preemie: 6 and 8, I believe.  More stunning was the news that she was breathing room air, and needed little oxygen intervention.  They did place her on CPAP - the pressure was needed to help keep her tiny lungs open, and she essentially was breathing pressurized room air (or 21% oxygen).

Let me tell you: waking up from general anesthesia after a c-section hurts.  They couldn't start the morphine before that, and I was in the worst pain of my life.  It took a few hours for things to settle down, but once it did I was good to go.  I am sad, though, that because of everything I was unable to see Judith her first day of life, save for a couple minutes when they wheeled me into the NICU before taking me back to my room.

John took pictures (after me giving a very drowsy crash course on using my DSLR), and participated in her first care times.  I'm grateful that he spent so much time with her the first day, so she knew her daddy loves her and would be there for her.  He brought reports back to me, and I was excited to hear that she was doing well.


Judith, only a few hours old



I cannot believe it's been a full year since our lives were changed so drastically.  No one ever anticipates a preemie or a NICU stay, and I truly never believed we would be in that boat.  A lot has happened over the past year, and I am thankful that Judith has done and is doing as well as she is.  She truly is a little miracle!

Friday, December 2, 2011

Judith's Birth Story (Part 4)

Thursday, December 2nd was a bit hazy.  I was on the mag for 24 hours, and feeling rather loopy from it.  My vision was starting to go double, but would resolve itself - a side effect of the mag rather than problems from the pre-e, thank goodness.  I couldn't sit completely upright, because I would get dizzy from the mag, and it was getting harder to watch TV because I couldn't focus on the screen.  John decided to go into work for a few hours that morning (his bosses and co-workers all declared him nuts), which in retrospect was probably good because he would've driven me nuts.  Plus it gave him something to do, and something to help take his mind off of everything.

The important event of the day was getting the 2nd steroid shot.  Honestly, I don't understand why so many women complain about these, or why they declare them so painfully evil.  Yeah, it stung a bit, but it wasn't nearly as bad as I was anticipating.  Maybe it's all the padding I have back there or something, but I'd take the steroid shots over the mag any day!

We had consults with a bunch of doctors, most importantly with the neonatologist.  He was able to give us some general expectations about babies born at 29 weeks: these babies have a very high survival rate (over 90%), and we could expect an average of 8 weeks in the NICU.  Some form of respiratory assistance would be needed, whether it was a ventilator or CPAP.  I was told I would have to pump breastmilk for her, since she would not be able to nurse directly for a while, and would receive her feeds through a feeding tube.  We were told to expect an umbilical line to be placed, hopefully quickly followed by a PICC line.  This consult helped a little bit, because I was able to realize that they would do everything possible to help her fight and thrive.  Not that it took away the fear, worry, and anxiety over her early appearance, but it was almost comforting to know that she would be in the best of hands.

John & I went on a tour of the NICU, and were able to see where Judith would be spending the next weeks of her life.  We saw a quiet room, had the monitors explained to us, and began to prepare mentally for all of the tubes and wires that would be hooked to her tiny body.

Our pastor came to visit that afternoon, and it was a pleasant diversion for me.

I was allowed to take a shower that evening, and it was much needed - I felt so scuzzy by this point, and my hair was a greasy mass.  John laughed at me so much, and if I knew I could get away with it I would've slugged him - because of the mag, I couldn't stand upright, and resembled a drunken sailor trying to walk to the shower.  I moved slower than a snail, trying to keep my balance, and for the first time he had to actually help me bathe.  The shower felt good though, and it was nice to go back to my bed feeling clean and less greasy!

With my c-section looming the following day, my oral intake was stopped.  I was without water, and was getting so thirsty, but I knew it had to be done to help prepare me for the morning.

To be continued...

Thursday, December 1, 2011

Judith's Birth Story (Part 3)

Wednesday, December 1st dawned a very warm, rainy, stormy day.  It was unusual weather for that time of year - temperatures were well into the 60s, and it felt more like spring than late fall/early winter.  This was also the day when the shit really hit the fan.

My OB indeed received the results of my urine catch, and it was not good: I had +3 edema, particularly in my legs; my kidneys were spilling 10+ protein, and were on the verge of shutting down.  He broke the news to us that I had  severe preeclampsia, and his goal was to have me make it as long as possible before delivery so they could administer steroid shots to help Judith's lungs develop.  He informed me that I would have to be transferred to a different hospital, one with a Level III NICU that could handle a very premature baby.  He explained that St. Joseph (where I was at) had some sort of relationship with St. Luke's in Bethlehem, and that was where they were going to transfer me.  My perinatologist was from St. Luke's, so I felt comfortable being transferred and placed under his care up there.

I was immediately started on magnesium sulfate, to help prevent any seizures that could be caused by the pre-e.  If you have never been on mag, I hope you never have to be.  That stuff sucks.  They give you a bolus over the course of an hour, and it's wicked - you get major hot flashes, and it can make you nauseated (thank God I avoided that part, but it did make me feel very funky - like an acid trip or something).  They also had to place a catheter, because the mag pretty much robs you of the ability to walk like a normal person; my urine output also had to be monitored, so this was an easy way for them to do so.

A group of student nurses was on the floor that day, and they asked if it would be ok for them to place the catheter.  I'm big on learning opportunities like these, and it didn't bother me.  Just my luck, though, it was storming at the time, and the freakin' power went out right as they were getting ready to place the catheter.  It took a little bit for the generator to kick in, and once it did the ladies got everything placed quickly and accurately.

I spent an hour in a medical van on the way to Bethlehem, and that was one of the most uncomfortable trips of my life.  I had some bad sciatica by then, and every bump hurt my poor bum.  I couldn't move my legs around (strapped down for safety), and I couldn't switch positions.  Combine that with the looming fact that I was only 29 weeks along and was facing the very real possibility of my daughter arriving by the end of the week.

My mom and John drove separately, and met me at the hospital.  I arrived first, because John got directions to the wrong place.  I was settling into my room by the time they figured out they were at the right place, and I had an ultrasound scheduled with my peri.  Mom didn't stay long - it's a good hour and a half drive for her, and she needed to get home; she stayed long enough to make sure I was settled, then made the trek south.

John went with me to the ultrasound, and the peri took a look at everything.  The day before, I had an ultrasound at St. Joe's, and my OB noticed something funky with the placenta.  My peri told us what happened: as a result of the pre-e, my placenta shut down, and Judith stopped growing.  It happened in the span of 2 weeks - I had an appointment with him 2 weeks prior, and everything was fine.  He also told us that because the pre-e was so bad, Judith was Intrauterine Growth Restricted (IUGR), and because my placenta wasn't functioning, they would have to deliver as soon as possible.  The hope was for me to hold out long enough to get the 2nd steroid shot, and they would schedule a c-section for 24 hours after the last shot (Judith was also breech, so an induction wasn't even possible).  They would perform an emergency c-section if things deteriorated further.

To be continued...

Wednesday, November 30, 2011

Judith's Birth Story (Part 2)

Tuesday, November 30th was spent finishing the 24 hour urine catch.  I was placed on bedrest, and was trying to figure out ways to entertain myself.  I had John bring one of my word puzzle books, and I watched a lot of TV.  I was also busy with visitors (surprise visitors!), and received a bunch of phone calls from family.

I think by this time, the dogs had basically been placed in my parent's car, with their things, and taken to their place to stay while I was hospitalized (John was still staying with me, and going to work from the hospital).  They were very upset, and really didn't know what was going on - Lady knew something wasn't right before I was hospitalized, but I'm sure she knew something really wasn't right.  Buster was extremely upset, and still stresses out if we have to leave them overnight.

That evening, we finished the urine catch, and everything was sent to the lab for testing.  We were told my OB would get the results first thing in the morning, and would talk to us then.

I was hoping that things didn't look too bad.  I knew that it was way too early for Judith to come, as I was only 28 weeks and 6 days along.  I wanted to try to make it to at least 32 weeks, knowing that even if she had to come early, the longer she stayed inside, the better off she'd be.  At that point, I didn't care if I had to be on complete bed rest, but I really wanted to be able to do it at home where I could at least be comfortable in my own bed.

To be continued...

Tuesday, November 29, 2011

CF Clinic

I have a feeling this will get buried among Judith's birth story posts, but for those of you who are interested, I have an update from today's clinic appointment!

It was our first appointment with Judith's new pulmonologist, and I had good vibes about him from the beginning!  He came highly recommended to me from a friend, and I'm so glad we made the switch!  He was able to answer my questions as best as he could, and I finally feel like we are getting somewhere!

First things first, and I know this is what most people are looking for: Judith now weighs 16 lbs 15 oz, and is 27" long.  She gained about a half a pound in a month, and is back on the charts! She's in the 3% for both length and weight!  We'll find out what her head circumference is when we go for her 1 year well baby.

I didn't get to speak with the nutritionist today (she had to leave early), so I don't know when we'll have the green light to transition to whole milk and wean off of the Neosure.  I do know that we will have to supplement, and they want to get that going now so we can keep her caloric intake up.

Her chest x-ray from October looks good, they're still culturing/monitoring the bacteria that they know is present (it's not growing, and they don't want to treat it because studies done on treatment of this type of bacteria show that antibiotics don't really help, and they don't want to risk it becoming resistant), and we can try weaning her off of the Zantac.  Judith's doc isn't totally sure that she's outgrown the reflux since she still shows signs/symptoms of it, but he did say that if weaning off the Zantac doesn't work he'll switch her to something else to try to control it.

I got some better answers about her genetic screen too.  Right now, it would be pointless to repeat the test to try to find the 2nd mutation - we'd get the same results, so we'll have to wait until they expand the panel of mutations before we can retest.  Judith definitely does not have a nonsense mutation, and the lab panel showed that some of the proteins are functioning, hence why she is still pancreatic sufficient.  We have about 2 more years to go before we can feel more confident that she'll remain that way - pancreatic insufficiency usually turns up sometime in the first 3 years of life.  If she does remain sufficient, she will probably have a milder form of the disease, and we'll be able to concentrate on treating the lungs and respiratory system.  I'm keeping my fingers crossed that her pancreas continues to function like it should!

The only bad part of the appointment was Judith's cough.  When they put her on the antibiotics almost 2 weeks ago, her cough went away, but started to come back this past Sunday.  Her doc is putting her on another antibiotic and also prescribed steroid treatment to help her lungs and to try to get rid of the cough.  I am so grateful that we started the Synagis when we did - her doc said they haven't seen too many cases here yet, but the season is closing in fast, and the protection will help her.  I would be extra nervous about this cough if we hadn't started the Synagis earlier in the month.

I feel so much relief after this appointment!  We'll get through the antibiotics - it's possible we could be dealing with all sorts of stuff the whole winter, so all we can do is our best to keep her as healthy as possible, and treat whatever may come up.

Judith's Birth Story (Part 1)

It's 5 days until Judith turns 1.  The 5 days before she was born were a whirlwind, and I can't believe it was 1 year ago when my pregnancy took an unexpected turn.  I want to share Judith's beginnings, with the hope that some day she'll read this and understand what a miracle she really is!

My entire pregnancy was rough, but little did we know how rough things were about to become.  I had a regular appointment with my OB on the Monday after Thanksgiving.  I just started my 3rd trimester, and in the prior week to my appointment I started to experience some swelling in my feet.  My pregnancy-induced carpal tunnel also was acting up more than usual, and my fingers were so numb that I lost a lot of sensation in them (writing and typing were becoming a challenge).  I remember talking to my mom about it, mentioning that by the end of a day of teaching my feet resembled that of a Cabbage Patch doll.  I chalked it up to normal third tri swelling, but made a mental note to talk to my OB about it at the next appointment.

We spent Thanksgiving with my in-laws, and the swelling seemed to have gone down a bit.  I made sure to prop my feet up as much as possible, and took it easy.  I did the same on Black Friday and that Saturday, but by Sunday my legs, along with my feet, were starting to swell.  Monday arrived, and I was blowing up like a balloon.

Cue my appointment that Monday.  It was an evening appointment, around 6:00.  John came home from work, and we left for the doctor soon after... without eating dinner (I said we'd just eat when we got home, figuring the appointment wouldn't last too long).  Stepping onto the scale was concerning: my weight had dramatically increased again, even with a big change in my diet.  I made sure to take off my shoes so my OB could see the swelling - it was the first thing he checked (along with the little test strip they use to check for protein in the urine).  We didn't finish our appointment - he sent me directly to Labor & Delivery for a non-stress test and a 24 hour urine catch.

I went through the catch before, so I knew how much of a pain it was going to be.  He wanted me admitted because my blood pressure was so high, and I was somewhat grateful because I wouldn't have to worry about doing the test at home again.

Everything looked good on the monitors, and Judith was getting pretty pissed at them; she showed her constant disapproval by kicking the monitors (silly girl).  Nevertheless, I was placed in a room for monitoring, and the nurses attempted to start an IV - I have horrible veins, but it took them over an hour to get the lines in, and they took my 1 good vein they use for blood draws (I was not happy about this).

While all of this was happening, my parents were driving to our place to watch the dogs, and to feed them their dinner.

John was able to spend the night with me, and neither one of us got a lot of sleep.  I was uncomfortable, and didn't have a spare pillow to help make me more comfortable.  I didn't get to eat, and was annoyed by that.  The nurses started the urine catch, and the waiting game for the results began.

To be continued...

Monday, November 28, 2011

T-Minus 6 Days

It's officially less than a week until Judith is 1.  Less than a week before I no longer have a baby, but a toddler.

Things have been insane around here since Thanksgiving.  We had a great holiday - the Wednesday before we spent the night at my parents' house, and went to church in the evening.  My "other" church hosted the conference-turned-semi-community service, and I played with the brass group (that's the 2nd time in about a month that my trombone has been played, and it's still trying to figure out what hit it - thank goodness it didn't shrivel up once it saw the light of day!).  Thursday John, Judith, & I drove to see John's parents and one of his brothers, and we had breakfast with them.  Turkey dinner was later that day, with my parents and grandmother.

Judith had her first tastes of some Thanksgiving foods, minus the turkey; she doesn't handle meats well, and I'm honestly waiting until she has more teeth (I'd ideally like to hold off until she has molars, based off of some good advice I was given a while back) before really trying meats with her.  Despite the meatless meal, Judith really enjoyed herself!  Mashed potatoes were an especially big hit:


We even put some gravy on them, figuring it would be a good high-calorie option for her.  She didn't seem to be a big fan.  Silly kid.

The rest of the weekend was spent shopping and preparing some things for Judith's upcoming birthday and party.  We have our paper goods & decorations, and yesterday I finished her pictures for our photo wall.  I feel a thousand times better knowing this is done!  I need to find my Pampered Chef easy decorator and wash it so it's ready to go for cupcake decoration, and there are a few small loose ends that we'll need to take care of, but otherwise we're in good shape!


We have another CF Clinic appointment, and it will be the first one with Judith's new doctor.  I have a big list of questions I'm taking with me this time, and hopefully we can get some answers.  I'm so curious to see how long she is, and how much she weighs!  Next week she'll have her 1 year well-baby visit with her regular pediatrician, and that means shots.  I'm seriously contemplating delaying one of them until her 15 month appointment since she's getting her Synagis injections at this appointment as well - I don't want to stick her too many times, and I'm wary of overloading her system too much.  Load these appointments on top of crazy rehearsal schedules to get ready for building dedication at my "other" church, PT changes (since we'll be at clinic during her normal therapy time), and general holiday preparations, I may go nuts.

I am excited that Judith has a new tooth!  Her upper front left tooth made an appearance over the holiday, and it's steadily working its way through her gum.  It'll be a while before it's fully in, but at least it cut through.  She's still teething like crazy though, and there are at least 2-3 other teeth lined up, preparing to come out.  I'm not surprised that she's cutting a bunch at once, but she's also been super cranky because of it - these teeth had better come out quickly for everyone's sake!

Monday, November 21, 2011

1 Year Pictures & Random Party/Holiday Stuff

I know this is the 10,000,000,000th time some of you have seen these, but I'm AWing all over the place, so skip this part if you don't want to look again.  ;)

I got Judith's pictures!  Here's a sampling of the shots:







Judith is such a ham!


Party prep will be in full swing once we get through Thanksgiving.  My mom & I decided to make the cupcakes instead of buying them.  I'm glad I have a reason to use the Pampered Chef easy decorator that I got a couple years ago and haven't taken out of the box yet (you can guess how often I get the chance to bake, let alone do fancy decorating).  I need to get the rest of my pics loaded to Shutterfly, and send them to Target for printing so I can make her photo timeline.  Paper products and decorations need to be bought.  Thank goodness we decided to nix the idea of an organized theme and are keeping things super basic - I'm not a very crafty person, and I'll be the first to admit that I keep putting all of this off to deny the fact that my baby won't really be a baby anymore in just under 2 weeks.

On top of all of this, John & I decided we want to do Christmas cards after all this year.  I need to dress up the peanut, get the dogs positioned, quickly put Judith down, and pray everyone stays in their spot for more than .5 seconds so I can snap a good shot.  I'm definitely not crazy enough to attempt this alone, which means I'll have to wait for John to be here and we'll have to do it in the evening.  I need to get this done, and I want to have everything created and ordered by the end of the week so my neurotic self is sure that people will get the cards in time.  This whole process will be interesting to say the least.

Sunday, November 20, 2011

Cold and Flu Season is Here...

... and we may be fighting off the first cold.  I noticed that Judith has been coughing more toward the end of last week, and after the big weather change Thursday into Friday, it sounded wet.  I called the clinic first thing, and they put her on an antibiotic immediately to help prevent anything else from taking over (they like to treat all CF patients aggressively to ward off any potential problems as soon as they can).  Poor peanut hasn't been herself - she fell asleep on her back twice on Friday, and didn't roll over to settle in like she normally does.  Her appetite has gone to pot, and she's not taking in as much as she was before.  Combined with some major teething, she's turning into a hot mess - not that I blame her.  :(

The first thing I thought of while making the call to Hershey was "Thank God we got her first Synagis shot into her a week and a half prior!"  Any exposure to RSV, and the vaccine will help prevent it from growing further, but I don't think it is RSV since she hasn't had any other symptoms so far.

Anyway, her pulmonologist put her on a Sulfa antibiotic to help with the cough.  Cue a small panic on my part - I'm allergic to all sulfas, so now I have to watch her closely to make sure she doesn't develop a rash.  So far, so good; my allergies didn't turn up until I took it 2 or 3 times, and since this is her first time (I'm assuming - I can't remember if she had any sulfas when she was in the NICU) I'm hoping we'll be good to go.  Trying to get her to take it is a completely different story.  We have a thicker oral injector the pharmacy gave us since she's getting a teaspoon twice a day.  It's a slow process, and we can only give her about 1mL at a time or else she won't take any of it, and even then she still spits some of it out.  Apparently medicinal grape flavor doesn't fool her.  Naturally, she manages to get her hands involved, smearing some of the antibiotic on them, and attempting to stick them in my mouth.  I'm probably overreacting, but I really don't want to run the risk of ingesting some of it and ending up with a bad rash for Thanksgiving.  If I didn't know better, I'd say she's trying to get revenge on me for forcing her to take the stuff.  Only 8 days more of this...

As for the teething front, I am happy to announce that there are some definite bubbles on Judith's gums!  I managed to peek inside her mouth yesterday, and there are some prime spots ready to come through soon, mostly on the upper left side of her mouth.  Oddly enough, it looks like she's cutting her upper canines first, but the other front teeth don't look like they're far behind.  I can see them lined up under the gums, and Judith is gnawing on anything and everything she can get her hands on.  I still hold with the stance that we're lucky in the teething department - so many moms that I talk to seem to have it much worse with their little ones, and I count my blessings that she seems to handle it relatively well (even though it still has to hurt a ton).


Yesterday was super exciting!  I got to meet another one of the wonderful ladies I talk to online, and she took Judith's 1 year photos for us!  She is super talented, and such a nice person to be around - I really hope that we can get together again sometime soon!  Once we get the link for the proofs, I'll post 1 or 2 so you can see the great job she does!

I know this is long already, but I have to share a funny story about the doggies (and frankly, I don't post about them much and feel guilty about that sometimes haha).  John had his laptop at my parents' house, and when we got back from pictures he was working on some church stuff.  He left the laptop running downstairs, and came up briefly to look at a present idea for Judith.  Little peanut needed a diaper change, so I had to run downstairs to get the wipes.  Buster felt the need to follow me down, and next thing I know he's barking at something.  Buster doesn't bark often (not like Lady, who will bark at a speck of dust floating by outside because it dared stray onto her turf), but when he does, it's usually because he doesn't like something (like a cat, another dog, or a rabbit).  I was upstairs, and his barking continued.  My mom asked who was barking, and I said it was Buster!  My grandmother couldn't figure out what he was barking at either; after a few more minutes of this, John finally called him and he ran upstairs.  A couple minutes later, he followed John downstairs, and began barking again.  This time we figured out what the issue was: Buster apparently didn't like the floating balls screen saver on John's laptop, and was barking at it!  He did this once before with a makeup model on one of my magazines, and it was just as funny then as it was yesterday!  He's so weird, but so entertaining at the same time!

Thursday, November 17, 2011

World Prematurity Day (Part 2)

As World Prematurity Day comes to an end, I'd like to share some "Then & Now" pictures of Judith.  I'm opting not to post her birth story today because you will get the full story starting in a week and a half (so stop by on the 29th for the first installment!).

We are so blessed that she has come so far, and is doing as well as she is today!  So without further ado, here are the pictures of our little 29 week miracle:


Judith under the bililight. 1 day old


Judith sitting tall - beautiful baby girl!  11 months old



I would also like to take a moment to express our gratitude to the neonatologists, nurse practitioners, nurses, and the physical therapist at St. Luke's: without them and their care, we would not be where we are today.  The NICU staff is truly wonderful, and we are so thankful for all of the excellent care they provide, and for the neverending support they offer to the parents of the little miracles that pass through the NICU doors!  Thank you, and God bless each one of you!

World Prematurity Day

Today is World Prematurity Day.  It's a day to help bring awareness to premature birth and the struggles these little miracles encounter.  It's a day of honor and remembrance.

Every year, 1 million preemies die worldwide, and 12 million preemies worldwide struggle to survive.

So many complications can plague these tiny, fragile lives.  Some of these complications will have a lifelong impact on the child, others will dissipate over time and with intervention.

I feel blessed that Judith is a survivor.  Things could've turned out differently for us.  I have an additional blessing in my niece, who was also a preemie - things could have been very different for her too.  But through God's grace, both Judith and my niece are doing well today.

There are mothers whom I met on the message boards that have lost their babies that were born too soon.  Today is a day to remember them.

Over the last 11 months, I've had the honor of meeting and getting to know a great group of other preemie mothers, both in the NICU and on the message boards.  It feels wonderful knowing that there are friends who have similar experiences and understand what you go through that you can share your frustrations, joys, and care tips with.  Today is a day to honor these babies.

Help us bring awareness to prematurity.  Share our stories with others.

Thursday, November 10, 2011

Another RSV Season, Another Round of Synagis

It's that time of year again - RSV season officially starts in November here, and that means it's time for the annual Synagis shots.

If there's any "bright spot" to CF (and trust me, I'm using that phrase extremely loosely), it's that Judith automatically qualifies for a full course of shots this year.  If we based it off of her prematurity alone, she would no longer qualify - 29 weekers 6 months and older won't qualify unless the other criteria are met.  Since she has a chronic disease affecting her respiratory system, she gets the shots.

I'm just glad and feel very lucky that we didn't have to battle with either insurance to get them covered.  Whether or not our pediatrician had to appeal for us is unknown to me, but at least we didn't have to panic after receiving a rejection letter from the insurance companies.

Yesterday was Judith's first shot.  They have to weigh the babies before measuring out the dosage, and then they have to determine if the dosage needs to be split into 2 injections - at the end of the season last year, Judith had to be stuck twice because she maxed out for what's allowed in 1 thigh.  This year, we're starting with 2 sticks, 1 in each thigh.  The nurse weighed her, and I was pleased to see that in the last month she's gained about a pound and is about 16 1/2 lbs!  Granted, she was weighed with a wet diaper, so that number is probably a few ounces less, but that's still good for her!  Then we had the fun of the vaccination.  I tried holding Judith down so she wouldn't squirm for the nurse, but she wanted to sit up.  Bad idea.  She was watching the whole thing, and the first needle to go in was a big one.  The nurse had to inject it slowly while I had the honor of experiencing the "sforzando" scream right in my ear (you know, the one that starts with an initial yelp, is silent for a good 30 seconds, and turns into an all-out shriek after a breath is taken).  I'm so glad the 2nd shot was a small one and could be injected quickly.

Judith's a trooper, though, and aside from being sore at the injection site and a little more sleepy than usual, she handled it well.  She's covered for the month, and I actually feel a bit better knowing she has some protection - that doesn't mean I'm going to take her into crowds and let her lick shopping cart handles or anything, but I can also rest my mind knowing that if she is exposed to RSV, the shot will stop it from growing and progressing into something much more serious.

Monday, November 7, 2011

Prematurity Awareness Month - What Not to Say

The Bump finally posted a great article with feedback from fellow preemie moms on the board. You can find the article here.

Many times, people will say something to a preemie mama and to them it's totally innocent.  But to us, it can be a low blow and sting badly.  I know in the past, I've heard some of these comments, and while I would either laugh or ignore them, they still stuck in my mind and hurt.

Hopefully the article will make people more aware of what it's like to be a preemie mama, and people will think twice before making comments like these in the future.

Thursday, November 3, 2011

11 Months

Judith, you are 11 months old today!  In 30 days you'll be 1 year old, and will no longer be an infant - you'll be a toddler.

Here are the highlights from the past month:

* You received your second flu shot, and have some protection for this season.

* Another CF clinic appointment came and went.  The pulmonologist was concerned about your weight gain, so we're trying to push more higher calorie foods.  You had another test for pancreatic function, and everything still looks normal.

* Mommy & Daddy took you to visit some of our former professors from the college we graduated from, and you got to play the pipe organ in the chapel!  You went straight for the trumpet stop - apparently you have a thing for this stop, because it's always one you make a grab for!

* You had your first visit to Zoo America, and got to meet more of the mamas and babies from the message boards!

* We completed another quarterly evaluation for Early Intervention.  You've been in the program for 6 months, and are making great progress!

* You had your hearing test follow-up and passed it again.  The antibiotics you received in the NICU didn't do any damage, and your hearing is normal.

* We had our first tour of the completed building addition at the church Mommy grew up in.  You enjoyed hearing the Shriner German Band play.  Grandma & Grandpa H. were thrilled to carry you around and show off your progress to everyone.

* You won't remember it, but you experienced an historic snowstorm on the 29th.  It's rare that we see accumulating snow at this time of year to begin with, let alone see about 8" fall!

* You had your first Halloween!

* We took you for a follow-up eye appointment.  You don't have strabismus - you have pseudostrabismus, which means your facial structure makes it look like your eyes are crossing when they really aren't.  As you get older, this will go away.  We're still monitoring your farsightedness, but for now you don't need glasses to correct it.


Judith's 11 Month Stats:
Weight: 15 lbs, 8 oz


Length: 26"


Hair & Eye Color: Your hair hasn't changed since last month - in color or quantity.  Your eyes are really starting to change!  There is more brown visible, so I'm guessing you'll have brown eyes like Mommy & Daddy.


Teeth: 2, both on the bottom.  You are teething like crazy again and gnawing on everything, so more are probably on the way!


Clothing Size: Mostly 3-6 month, but we're starting to move you into some 6-9 month sleepers and pants.


Diaper Size: 3


Meals:  You get 5 bottles a day, totaling about 22 oz.  You will still eat fruit purees, but vegetable purees are completely out of the equation.  Most of your meals consist of finger/table foods, and you are starting to try many new things!


Developmental Milestones: You are doing a ton of new things!  You crawl and explore everywhere, you sit unsupported and finally figured out how to push yourself up into a sitting position, you can climb up and down the stairs, you're starting to learn how to wave, your pincer grasp is emerging, you can feed yourself finger foods, you love "talking" to everyone and sound like you're getting ready to say real words, and (much to our surprise during the snowstorm!) you are pulling yourself up into a standing position!  You accomplished 3 of those all within the last week of October (pushing into a sit, pulling to stand, and navigating the stairs) - way to go, big girl!





Sitting tall, unsupported!


Fascinated by the camera lens


Happy 11 months, Judith!


Tuesday, November 1, 2011

November is Prematurity Awareness Month

A happy couple receives the exciting news that they are going to be parents.  They will probably worry about the health of their baby and the health of the mother, but will be looking forward to meeting their goal of delivering a healthy, happy, term baby.  They probably don't think a lot about what would happen if they don't meet that goal.  They're not focused on preparing for anything other than a term baby.  They're not prepared for a preemie.  But they may end up as a statistic, 1 of 8 births.

We are the face of the 1 in 8.

We certainly weren't prepared for a preemie, or for the roller coaster ride of the NICU.

So many different factors contribute to a premature birth: sometimes the cause is known, as it was in our case (severe pre-e and IUGR), sometimes the cause is unknown (some women experience unexplained preterm labor, and their delivery cannot be stopped).  Sometimes the cause is preventable.

The March of Dimes is working to help bring awareness to prematurity, and is helping to try to lower the rate of premature birth in this country.  On their website, they state, "Premature birth costs society more than $26 billion a year and takes a high toll on families.  Babies born just a few weeks early are at risk of severe health problems and lifelong disabilities.  Premature birth is the number 1 killer of newborns." (www.marchofdimes.com)

We know all too well about the emotional and physical toll that comes with having a preemie.  We're still waiting to see what lasting effects and/or complications Judith may have because of her very early arrival.  We are very fortunate that, so far, she is doing as well as she is - not all preemies are as lucky as she is.

We, and all families of preemies, need your help.  We need you to help spread the word about prematurity.  On November 17, World Prematurity Day, talk to people about the statistics.  Advocate for all preemies.  You can also donate to the March of Dimes at this page on their website.

Our story is one of the over 1400 stories that happen every year.  My prayer is that this number will decrease significantly, and no family will ever have to go through the hell of having their baby arrive too soon.

Monday, October 31, 2011

Halloween Eye Exam

It's Judith's first Halloween today, so how do we celebrate?  With a follow-up appointment to the opthamologist!

In a previous post, I mentioned that we were monitoring Judith for strabismus.  Much to our relief, it turns out she has pseudostrabismus: it may look like her eyes are crossing, but they really aren't.  It has a lot to do with her facial structure, and as she grows it should go away.

We also learned that we can hold off on getting her glasses for at least another 3 months.  The doctor doesn't think it's necessary to give her glasses right now, but we are closely monitoring how Judith does with the farsightedness.  It's inevitable that she'll end up with glasses in the near future, but I'm hoping to hold off as long as possible in the hopes that it'll be a bit easier to teach her not to rip them off her face when she's older.


Judith didn't go Trick or Treating this year - I thought it would be a bit silly to take her around, and there would only be 2 places we'd go to anyway (our neighbors on either side).  Plus I feel bad getting candy for her when she can't eat it.  That probably sounds completely silly.  Anyway, we did dress her up in her costume for her appointment, and managed to snap a picture of her with the dogs in their costumes:


L to R: Buster (cow, or "Boo Cow"), Judith (pumpkin), Lady (unicorn)


Happy Halloween!

Saturday, October 29, 2011

Standing!

Guess who decided to pull up to stand on her own?  ;D

I couldn't believe it.  We were sitting in the living room and Judith was on the floor playing with her piano.  She was on her knees, pushing at one of the buttons when she grabbed hold, moved her legs, and stood up without assistance!  She only did it once, but I'm sure this won't be the last time she does it.

Tuesday, October 25, 2011

Adventures with Finger Foods

Judith has pretty much rejected purees at this point (she will still eat some pureed fruits, but veggies are a definite no-go), so we've been experimenting with finger foods.  Her timing isn't that great - I wouldn't be quite as frustrated if we didn't have the possible weight gain issue going on.  So after talking with a couple fellow CF mamas, I'm experimenting with different foods and different ways to boost her caloric intake.

She's handling the new solids well.  For a few weeks, we've been giving her different Gerber finger foods, and she loves most of them; but it's also time to introduce regular table foods.  She's had some canned/steamed veggies, her first taste of beef pot pie, some spaghetti, buttered noodles, mac & cheese, waffles with butter, and ::gasp:: french fries.  She doesn't eat a lot of any 1 thing, so the formula helps compensate.  As she grows and her tummy gains more space, I'm hoping this will change.  Maybe it's more of an issue of things being new and she's unsure about whether she really likes it or not.  She's such a mystery sometimes.

I do know 2 furry creatures that are thoroughly enjoying mealtime these days.  Buster and Lady certainly aren't lacking for food around here.  Heck, the other week Buster helped himself to Judith's entire breakfast (and did get punished for stealing food... stinker).  Lady's much more patient with Judith, and will wait until I place the leftovers on the floor for them to clean up (since it's mostly veggies anyway, it doesn't hurt them at all haha!), but trust me - she's just as enthusiastic about the table food as Buster is.  Let's just say it's really awesome to have 2 furry vacuums to clean up the trails left behind.  ;)

The one thing that's bothering me, and probably will bother me for a while, are the sanctimonious Judgey McJudgersons who feel the need to lecture me about my child's eating habits, especially when they know nothing about our situation.  She gets plenty of healthy foods, but I'll be damned if I'm never going to pass up an opportunity for her to have some high calorie, junky foods - if it'll help her gain weight, so be it.  She's not eating it all the time, and really there are much bigger things to worry about in life than concocting some lame theory equating eating a chicken nugget to eating a bowl of nuclear waste.

Friday, October 21, 2011

This is exciting!

Check out this article from the CFF Foundation!  There is a new drug coming out to help treat the underlying causes of CF, not just the symptoms!

The one that is currently awaiting FDA approval won't help Judith, since she doesn't carry that mutation.  But if you read the end of the article, there is another drug they're looking at that would have the potential to help her since she does carry the DF508 mutation!

This is huge news - just reading this and knowing that there may be more hope for Judith's future is amazing!

Wednesday, October 19, 2011

Normal and Normal

I love hearing that a test result comes back normal!  We've had plenty of "not normal" results from tests, so it's always nice to hear something's functioning the way it should be.

I called the CF clinic to see if they had Judith's stool specimen results, and everything was "very normal" according to the nurse.  She's still pancreatic sufficient - yay!  I'll admit that I was concerned that something was up, because she's had some funky looking poops recently.  Now I'm attributing it to the slight change of diet, and the addition of more yogurt.

Today we took the little peanut for a follow up hearing test.  She more than passed the standard newborn test before she was discharged from the NICU, but because she was on different antibiotics and because of the possible meningitis with the GBS infection we had to do a repeat to make sure the antibiotics didn't mess with her hearing.  I know she hears fine, but this test helped confirm that - everything looks good!  In some ways I wish we would've held off for another month and a half, to avoid the whole having to force her to sleep thing so they could check the nerve function leading to the brain stem.  The tech explained that once babies are a year or older, they just do the tests we did before trying to get Judith to sleep.  After an hour of Judith being very silly (and laughing at my mom for no reason - that was hilarious though!), she finally fell asleep and they were able to test 1 ear.  We tried moving her head to get to the other ear, but she woke up, therefore we couldn't finish the test.  Worst case, our pediatrician will want to reschedule the test, and we'll have to go through all of this again, but I'm going to push to skip it since everything else came back normal - why go through it again, and try to force Judith to nap in a new setting where she wants to explore everything?

Sunday, October 16, 2011

Fall Fun and a Get Together

This weekend was filled with so many fun activities - it was busy, and we're all tired, but it was definitely worth it!

Saturday we took Judith to a pumpkin patch for the first time.  She couldn't do a lot of things, and wasn't able to appreciate a lot of it, but she still had fun!  We went on a hay ride, which went through the orchard and made a stop at the pumpkin patch - you could get off and pick your own pumpkin, but we decided to stay on the ride.  It's not like Judith could really "pick her own" pumpkin this year anyway, and it would be more fun for her to be able to walk around the patch and explore.  Plus the price per pound was kind of expensive, and the pre-picked pumpkins were much cheaper.  We chose a pre-picked, smaller sized pumpkin for Judith's first Halloween!


Judith is not amused.


Hay rides are fun!


Sitting amongst a bunch of pumpkins


I'm not sure if John's going to carve it for her or not - it's on him if he wants it carved.  I honestly hate carving pumpkins.  It's such a mess, and whenever I try to carve anything, it always turns out dumb.  I'd rather paint it so it lasts longer.  We'll have to make a decision, but for now it looks quite decorative in the living room as is!

Today Judith and I drove to Hershey for a get together with some of the great ladies I talk to online.  We met at Zoo America, and spent the afternoon socializing and looking at the different animals.  Zoo America isn't a huge zoo, but it's a decent size: something like 11 acres, and they have different animals from all over North America.  There were a few animals missing (most notably the bison that died in the recent floods), a few habitats under construction, and some animals sleeping/hiding, but overall we saw a good bulk of the animals housed there.  It was such a fun afternoon - it was great to meet many of the ladies, and see a couple that I've met before!


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Tuesday, October 11, 2011

NICU Visit

Unlike the potentially stressful visits of our past, this NICU visit was a good one!  We took Judith back to St. Luke's yesterday afternoon to see the staff and to show off her progress.  There weren't a lot of nurses there, and there were definitely nurses, neos, and NPs that we missed seeing, so we'll have to go again sometime!  Those that were there, though, were impressed by Judith's progress and were glad that we brought her back to see them.  I need to talk to John and see if we can swing another visit this month.  After Halloween, a visit won't be possible because of RSV season - we definitely don't want to risk taking anything to the NICU, and on the same token I want to avoid potential germy places (like hospitals) as much as possible for Judith's sake.

Going back definitely brought back a ton of memories, some good, some bad.  But it was nice to be able to let everyone see that the hard work they did for Judith (and for all of the babies that pass through the NICU doors) really paid off, and she's able to thrive because of the care they gave her in the first 63 days of her life.

Thursday, October 6, 2011

CF Clinic

We had yet another appointment at the CF Clinic today.  It wasn't a horrible appointment, but it wasn't great either.  I feel frustrated, and I'm concerned about where things may be headed (I could also be making a mountain out of a molehill).

The good news:
For the immediate future, it looks like we can avoid a nebulizer for breathing treatments.  Judith's lungs sounded clear, and her doctor didn't mention a need for one right now.  She grew a little more than an inch, and is over 26" long!  We got a bigger percussor to use for her CPT - it's such a minor thing, but I'm hoping I can get better coverage in the zones to get more crap out of her lungs.

The bad news:
Judith gained a half a pound since her 9 month well-baby visit, and only gained 800g since July - she weighed 15 lbs 8 oz.  The slowdown could be caused by her increased mobility, but it could also be a red flag for something bigger brewing.  So now we get to do another fun poop collection to check if her pancreas is still functioning normally or not.  If it's not, that means she'll have to start taking pancreatic enzymes every single time she eats.  We're also working frantically to build up her caloric intake to boost her weight gain again.  We're going to add some snacks to her routine, add a third solid meal, and possibly boost her Neosure from 22 calories to 24 calories.

We had to take her for a chest x-ray right after her appointment.  The last one she had was in the NICU, and her pulmonologist wants to see what's going on.  Judith's coughing has increased, and she's been spitting up mucous, so even though her lungs sounded clear he wants to rule out any problems.  Poor Judith was so tired and cranky and did not want to put up with being x-rayed.  She did well though, and the radiologist said the films turned out fine.

This is so minor in the grand scheme of things, but I asked about the requirements (so to speak) to get The Vest for her daily CPT treatments.  She needs to be at least 22 lbs to start on it, and we're nowhere near that.  While The Vest would make life a little easier (and possibly simpler, but I'm probably delusional with that), it looks like manual CPT is the plan of action for a while yet.

I wish I could get some straight answers.  We need to get the latest test results back to get a handle on things, but in the meantime I'm frustrated and worrying about the outcomes.

Wednesday, October 5, 2011

Apple Founder Steve Jobs

Today we lost an innovative genius.  Steve Jobs lost his battle with cancer.  I'm saddened by this news, and I truly hope the heads of Apple continue his legacy by producing cutting edge, quality products.

RIP Steve Jobs.

Tuesday, October 4, 2011

So... We're starting WHAT?

Today is Tuesday, and that means Judith has her weekly PT session through Early Intervention.  She's doing very well, and I have to say that she's turning into a little overachiever.

So her therapist arrives like normal, and works with her briefly on crawling.  Then he declares that since she's doing so well with her crawling, it's time to start working on going up and down the stairs.

Say what?

I am so not ready for this.

In normal Judith fashion, she decides to do the hardest thing first: going down the stairs backward.  Going up (facing forward, obviously) is normally the easiest part, but go figure it's the one she had trouble with.

I was really hoping she'd be sitting on her own, unsupported, before we moved on to this skill.

Sounds like it's time to start using the baby gates regularly... for Judith instead of the dogs.

Monday, October 3, 2011

10 Months!

Judith, you are 10 months old today!

Here are your highlights from the past month:

* Things are steadily becoming more interesting, as you are exploring your environment even more!  It helps that you are much more mobile, and you're having an easier time getting to things.

* You had an occupational therapy (OT) evaluation at the beginning of the month; there was some concern about your fine motor skills when you went to the NICU developmental clinic, but after a full evaluation there isn't a significant delay after all... well, not really more than what we expect when we adjust your age.  :)

* We have been watching your vision, and noticed some eye crossing when you are focusing on objects (the occupational therapist noticed it, as did your pediatrician).  We got a referral to a pediatric opthamologist to check for strabismus.  Mommy took a picture of your eyes after the appointment, and it looks like we may be noticing pseudostrabismus - in other words, your eyes aren't really crossing, but your facial structure right now makes it look like they are crossing.  The doctor did confirm your farsightedness, and we needed to make another appointment to monitor that.  You may end up with glasses by the end of this month, or the beginning of the next, to start correcting it.  You can blame it on our family's lousy vision genes ha ha.

* You had your 9 month well-baby visit, and received 2 shots: your final Hepatitis B, which completed that series, and your first flu shot (you will need a booster for that, and will get it in a couple days from today).  Your pediatrician ordered your Synagis shots, and you're actually near the top of the list to receive them.

* We actually didn't have to take you to the CF Clinic this month for an appointment!

* You ventured to Knoebel's again, and this time we met up with your other grandparents, your uncle, and your cousins!  You enjoyed your time, and got to ride the train while Daddy held you!

* You experienced an historic weather event: record flooding.  You're obviously way too young to understand what happened, but someday we will tell you about it.  Where we live, we were very lucky and did not see high flood waters, but so many other areas, especially those where family and friends live, were not so lucky.

* We took you to another Rail-B-Q, and you enjoyed seeing 1 Amtrak train and 2 freight trains.

* You are continuing with your physical therapy through Early Intervention, and are making progress (more about that in the milestones section)!

* You have 2 teeth!  Both of them are on the bottom, and they're the front ones.  You seem to be teething again, but I can't see any that are even remotely close to cutting.


Judith's 10 Month Stats:
Adjusted Age: 7 months, 2 weeks, 3 days


Weight: 15 lbs. (as of 9/7/11)


Length: 25" (as of 9/7/11)


Hair and Eye Color: Your hair color hasn't changed - it's very much like Mommy's: a lighter brown with a reddish tint.  Your eyes are hazel - blue with flecks of brown and a little bit of gray in them.


Clothing Size: 3-6 month


Diaper Size: 3


Feedings: You drink about 20 oz of Neosure each day, and eat 2 meals of purees (3-3.5 oz at each meal) with miscellaneous finger foods (puffs, mum mums, Lil' Crunchers, or arrowroot).


Medicines/Treatment Routines and Therapies: Zantac for reflux, albuterol (inhaler + spacer) for your CF, and 2 vitamins (1 specially compounded for people with CF); CPT twice every day; physical therapy once a week for an hour


Developmental Milestones: You are a little chatterbox, and it sounds like you are getting closer to saying your first word(s)!  You are extremely curious, and like to explore everything. You creep around on the floor, and try to crawl in a way that people typically think of when they visualize a baby crawling - you're actually getting pretty fast at what you're doing!  You are doing better at picking things up; you don't quite have the skills for a pincer grasp, but you can pick things up with your fist and get it to your mouth.  You love Buster and Lady - you try to touch/pet them whenever you can, and you think they're hilarious (you laugh at them often).  You still enjoy blowing raspberries and perfecting your "excited" shriek, and now you are starting to semi-hug people and the dogs!  You are oh-so-close to pushing yourself into a sitting position, and sitting on your own.  You can sit unsupported for longer stretches, and can go from a sitting-to-crawling position; now you just need to figure out that when you're sitting on your hip you can push yourself upright with the arm you're supporting yourself with so you can sit upright!


Happy 10 months, Judith!  Only 2 more months until your big day!