Sunday, July 24, 2011

Prayers for 2 Special Babies

If you're the praying type, please add 2 very special babies to your prayer list (both of their moms I met on The Bump).

First, little Adria.  Adria's FB Page details her story.  Adria has never experienced life outside of the hospital, and sadly never will get to do so.  Her fragile life is being cut very short, and her parents and family can use all the prayers that people can offer.

Second, little Cassady.  I met her mom on the Special Needs board - her daughter also has CF (she has severe CF disease). They just found out this week that she's infected with staph, E. coli, and pseudomonas.  I had to google pseudomonas, and this bacteria is very serious for CF patients - it becomes resistant to antibiotics and treatments, and causes irreversible lung damage leading to respiratory failure.  It's a nightmare situation for them, but it sounds like they can start treating it and hopefully push it out of her lungs for now.

I absolutely hate that these families are going through this .  Life sucks.

Friday, July 22, 2011

GTG Fun!

Yesterday Judith & I braved the insane heat & humidity to go to a get together (GTG) with 2 awesome ladies I've been talking to online.  We met up at the mall - we originally planned on the park, but once we saw the extreme heat headed our way we decided to go somewhere air conditioned but with entertainment for the older kiddos.  It was a bit surreal meeting the ladies and their babies in person.  We've been talking back and forth for months, and "knew" each other going into this, but it was still a weird feeling finally meeting face to face!  We had an absolute blast!  The ladies are absolutely wonderful ladies, and very sweet!  Their babies (and the older kids for the 1 mom!) are adorable, and the older kids were so well behaved!  We're totally planning to do stuff like this more often, and we're hoping that once it gets cooler (like when we're heading into fall or something) we can go to Zoo America.  I can't wait!!!

Monday, July 18, 2011

2 Years!

Today is a big and special day in our house.  7/18 marks the 2 year anniversary of our adoption of Buster & Lady!

I can't believe we've had them with us for 2 years already.  They are more than comfortable here with us, and are having a blast.  They love Judith and often use her as a salt lick, which is really ironic because the kid's tasting super salty right now with the heat (people with CF lose salt very quickly, especially through sweat).  Both dogs are patient with her exploration of them, especially Lady because Judith is favoring her right now during her CPT time - she likes to reach out and touch her jowls and neck, and feel her soft fur.  Buster's not too fond of Judith when she gets super loud because she disturbs his beauty, or "boo"ty sleep (see what I did there?) as I like to call it!  Lady still follows me to the nursery whenever I change Judith's diaper (Buster follows most of the time too, but if he's sleeping under his blankets he won't follow) to make sure that everything is fine.  Lunchtime is their new favorite time of day, because they know they'll get to clean up and finish whatever solid is left in Judith's bowl.

Most of you don't know their story, so I would like to share it with you!

A little more than 2 years ago, John & I decided that we wanted to get a dog.  We were in the middle of TTC, and still having a rough time with it.  The economy was stinking, and I couldn't find temp work to fill in the gaps - things were pretty darn lonely here, so we decided since having a baby more than likely wasn't in the very near future, we would get a dog.  The timing was perfect because I was home and would be able to train a puppy if necessary.

We had to decide on what type of dog to get.  John grew up with boxers, I grew up with terriers (an airedale when I was a baby, and a westie through my school and college years).  We didn't want anything too big because we didn't have the space, so a boxer was eliminated from the list.  We thought about a westie, but I didn't think it was fair to bring a westie to a home where there wasn't ample yard space to run around in.  We talked, and decided that we wanted either a Boston or a Frenchie.  We had fallen in love with a church member's Bostons, so we settled on a Boston.

We thought about a puppy, but that really wasn't for us at the time.  Rescue suited us much better.  I began looking into rescues, and I stumbled across the Northeast Boston Terrier Rescue.  We saw some of their fosters on Petfinder, and knew we had to fill out the adoption application.  We had a phone interview, and a couple days later we got another phone call: they wanted to know if we would be willing to take 2 dogs.  I remember John hesitated, and after a bit of discussion we said yes.

During this time, Buster & Lady were surrendered to a shelter.  They were and are incredibly bonded, and the shelter knew they had to be placed together.  If my memory serves me correctly, the shelter knew that this may not be possible, so they contacted the rescue to see if they could help.  Enter Buster & Lady's wonderful foster family - they got them into the rescue through agreeing to foster them!

We were able to talk to Buster & Lady's foster mommy over the phone, and she told us all about them.  We knew that Buster has a sensitive personality, and he was very sad in the shelter.  We also learned that Lady is very dominant and protective of Buster (oh, and we also found out that she's ball crazy).  We began making arrangements to pick the 2 of them up once everyone got word that our home inspection went well.  The date was set, and we began preparing for our new additions!

July 19 rolled around, and John & I waited anxiously in a parking lot in New Jersey.  Before we knew it, Buster, Lady, their foster mommy, and 1 foster sister were rolling into the lot!  Buster wasn't seen right away, but Lady was - she was in the driver's seat, on her foster mommy's lap!  Buster was very unsure about what was happening, and seemed very sad overall.  Lady definitely didn't care - she greeted us, and jumped into the back of the car pretty quickly, ready to head off to her next adventure.  We spent some time together, going over instructions for their feedings and learning how to care for Lady's eye.  John & I signed the official adoption papers, and were able to leave with our new furbabies!  We packed them into the car and headed home.

Lady was comfortable with us after about 36 hours - the proof was waking up the second day they were here and finding her in the bed (surprise!).  Buster took a bit longer to settle in, but he was up on the bed too the night after Lady decided to take the plunge.  Overall, though, it took them about 3 months to really feel comfortable and begin to realize they wouldn't be moved suddenly again.  The first couple of times they had to stay with my parents overnight for whatever reason were tricky, and once Buster realized he was coming home, he was fine (we're back to square one with that though after they had to spend a week with my parents while I was hospitalized from the preeclampsia and Judith's birth).

Buster & Lady, happy 2 years in your forever home!  We can't wait for many, many more great years to come!

Here are some pics for you to enjoy!

Lady a.k.a. Love

L to R: John's hands, Buster, cranky pants Judith, Lady

Buster a.k.a. Boo

Wednesday, July 13, 2011

Salt & Calories

One of the quirky things about having a child with CF is the nutritional side, and there are many, many things we'll be learning as Judith gets older.  Right now, I feel weird doing some of the things we need to do, because we would seriously be judged out in public by strangers that have no clue why we're doing it.

Funny/random side note: I have Judith in the Ergo right now, and as I'm typing about nutrition, she's sitting here alternating between licking my shirt, the Ergo strap, and gnawing on said strap.  Either she's telling me she needs more fiber, she's teething, or is orally exploring.  Whatever it is, it's gross.

Back to my original thought.  One thing we need to do is add salt to her formula.  Right now, she gets 1/4 tsp mixed into her pitcher each day.  People with CF shed salt like crazy when they sweat (more than a normal person), and it has to be replaced - this is why when you kiss Judith, especially if she's warm and sweating, she'll taste salty.  Salting down her food or formula helps with this replacement.  It's especially critical for her to get enough salt right now because we're in the hot summer months.  The interesting part is she won't have to worry about hypertension and all of the other things that happen from too much salt - apparently people with CF are immune to this happening because of the amount of salt they lose.  I thought that was interesting.  :)

For some strange reason, I'm a little paranoid about adding salt to Judith's bottles when we're out in public.  I try to remember to add the salt either to the water in the bottle or to the powder in the travel case before leaving the house so I can avoid people seeing me do it.  I don't know - maybe I'm worried about people judging, and maybe it's a defense mechanism against having strangers walk up to me and give me an unsolicited lecture.  I'm hoping that I can get over this paranoia in time, because there will be a day in the near future where we'll be in a restaurant or something and I'm going to have to salt her food or drink for her.

The other thing we need to do is boost her calories in her food.  People with CF need high calorie diets to make sure they're getting all the nutrients their bodies need.  We're keeping her on the NeoSure (22 calorie formula) until we transition her to whole cow's milk.  Our bank account is weeping at this news, because the cost for that stuff is insane, but if it's going to give her what she needs I'll gladly give it to her.

I wish we could give her straight purees, but we have to add some sort of cereal to boost calorie content of those as well.  So I mix rice cereal in with her veggies, and oatmeal in with her fruit.  If you remember, I posted a while ago about the rice cereal being a no-go; well, if it's masked by another food, Judith will eat it with no problems!  And she absolutely loves the oatmeal.  The cereal has a bonus effect: it thickens some of the runnier purees, and Judith likes her purees on the thicker side.

I'm interested to learn how all of this is going to change as Judith gets older. :)

Wednesday, July 6, 2011

Eye Exam

Judith had a 6 month follow-up eye exam today, and while I'm thrilled we don't have to go back to that place ever again, I wasn't overly thrilled with having to go and the mess with the receptionists.

I was irked when we got to the check-in desk, because they don't accept secondary insurance, especially MA.  This would have been very nice to know beforehand, because I certainly was not prepared with the main co-pay.  Thank goodness my mom had cash on her so we could cover it.  Nowhere in any of the information that they sent me did it say what kind of insurance they accepted, and I'm glad they took our primary because I would've blown a gasket on them if we got there and they said they wouldn't accept that.  They half argued with me about things, and I said, "Well it would've been nice to know what insurance you accepted before we came here."  Then they asked who made the appointment, and I told them the hospital made it for us.  They were a little nicer to me then, even though I was never nasty to them.  Turds.  /vent.

Apparently this exam was completely unnecessary.  Her ROP was resolved/healed before she was discharged from the NICU, and the doctor that saw her for her eyes dictated in his letter that we only needed to be seen before a year if she was presenting with symptoms indicating vision problems.  Both the nurse and the doc we saw questioned why we were even there, and the whole time I was sitting there a bit irritated that this bit of information was left out of our discharge instructions.  I could've been saved the aggravation of throwing Judith's schedule out of whack to drive all the way up to Bethlehem, through multiple construction zones (thanks PennDOT for not completing your work on time again), and completely missing the place because we couldn't find the road we were looking for and it came up suddenly on us (my mom went along with me to help, and she's old school - she doesn't have a GPS).  We found out that Judith is far sighted - I'm not willing to fully pin that on the ROP, because we have a family history of that - and she will need to be examined again in 9-12 months.  Thank goodness we got a referral to a good opthamologist in Reading so we won't have to travel as far next time.

Sunday, July 3, 2011

7 Months!

Judith, you are 7 months today, and are getting so big!

Here are some highlights from the past month:

* You had your 3rd and final sweat test, and the results were high enough again to confirm your CF diagnosis.  Your numbers from the 2nd test were 61 & 62, but this time they went up to 64 & 65, well into the range of definitely having the disease.

* We also got the results from your genetic screen, and it wasn't what we were expecting to hear.  We knew you carried the DF508 mutation (that you got from Daddy), but we didn't know what you got from Mommy - and we still don't know.  They couldn't find your second mutation, something that happens in about 3-5% of CF patients.

* You went to your first church picnic at Grandma & Grandpa's church!  We went to the service in the park, and you got very upset when Grandma read the lessons and did the Prayers of the Church - you were probably upset because Grandma wasn't doing "This little piggy" with you!

* You are much more aware of your surroundings and are very inquisitive!  You love watching the dogs, and have started squealing with excitement when you're watching Lady & Buster!

* You got your next series of shots.  Saying you were ticked this time is an understatement.

* You love to stick your tongue out, babble, and squeal at people!

* You are in the early stages of teething, but Mommy & Daddy are trying to think of ways to help you - you are exhibiting some typical preemie sensory issues and freak out at temperature changes (particularly when something's colder than what you are used to) and certain textures.

Judith's 7 Month Stats:
Adjusted Age: 4 months, 2 weeks, and 3 days old

Weight: 12 lbs, 6 oz (as of 6/14/11)

Length: 22 1/4" (as of 6/14/11)

Hair Color: There's still a slight reddish tint to it in certain light, but it's mostly a darker brown and still not abundant.

Eye Color: Most of the time they look bluish-gray, but depending on how you look at them you can see some brown flecks in them.

Clothing Size: 0-3 month rompers, dresses, & bubbles; 3-6 month footed sleepers

Diaper Size: Size 2

Feedings: You take 24 oz total of NeoSure every day, eating in 3 hour increments and taking about 4-4.5 oz per bottle.  You get 1 meal of solids at noon (fruit or vegetable puree with 1 tsp of rice cereal mixed in), and will eat anywhere from 1.5-2.5 oz.

Developmental Milestones: You are doing many new things!  You just started giggling occasionally, you can roll from your back to your belly smoothly, you roll from your tummy to your back when you want to, you can push up onto your hands when you're on your belly and hold your head up at more than a 45 degree angle for a long period of time.  Your head control is great, and your motion is awesome thanks to all of the physical therapy.  You can sit upright, assisted, and love it!  You babble all the time, making vowel sounds and a few consonant sounds.  You track items, touch/explore some things (like the dogs), study things, and are generally very curious!  You can hold small toys in your hand for short periods.

Happy 7 months, Judith!