Monday, March 26, 2012

Inquiring Minds Want to Know...

It has been a pretty quiet week around here, with no weigh in and only our weekly Speech appointment.  Overall, Casey has done pretty well with our new feeding schedule, and we are hopeful her weight check this week will confirm that we can continue with the 5 feeding a day schedule.  Since I don't have much news to report, I thought I would answer a few of the questions I am most often asked.  When you open your life up on the Internet, you get asked some pretty interesting questions.  So here goes:

1. What is Casey's long-term prognosis? 

As of now, Casey does not have a long-term permanent diagnosis.  She currently qualifies for Early Childhood Intervention Services in the areas of Speech for eating, Nutrition for weight gain concerns, and Specialized Skills Training for a developmental delay of her motor skills.  Due to her extreme prematurity, it could take two to three years for her to fully catch up, but we are seeing huge progress.  We set her goals based on her adjusted age, meaning we expect her to do things based on the age she should be rather than her actual age.  She will have to re-qualify for services annually, and can continue to receive ECI services until age three, at which time the school district would take over in the event that she is still needing services.

2.  Are you going to be one of those "Germaphobic" moms?

Umm, this is one of those questions that always catches me off guard.  I know many people are under the impression that a few germs are good and help build up a child's immune system.  I can assure you that for a micro preemie, this is not the case!  We are under very strict instructions from the hospital, our Pediatrician, and our Pulminologist to keep Casey isolated during RSV season and to use caution and avoid large crowds for at least the first year.  I don't consider myself to be afraid of germs, however, when you have spent 130 days in the hospital, you tend to want to avoid a repeat stay at any cost and adhere to the advice of your many doctors.

3.  What caused you to go into labor so early?

It has been determined that my undiagnosed Type 1 Diabetes at the time of my pregnancy caused my preterm labor.   A diagnosis of Type 1 (aka Juvenile Diabetes) is rare at my age and even more rare to be diagnosed during pregnancy. My story has baffled more than one doctor!That reminds me that one of these days I need to get around to doing a blog post about my birth story and the days I spent on hospital bed rest.  One of these days....

4. Is your Diabetes permanent and do you have to take shots?  Are you going to get an insulin pump?

Ok, so that is two questions, but yes, unlike Gestational Diabetes, Type 1 is permanent.  I take (at least) 4 shots a day.  I check my blood sugar and take insulin before every meal and at bedtime.  An insulin pump is something I would consider in the future, but am not planning to get at this time.

5. Are you planning to have more kids?

We definitely want more kids in the future.  My Diabetes will have to very tightly controlled and I will be very closely monitored by my Endocrinologist and a High Risk doctor for all future pregnancies.  The good news is that since we do know the cause of Casey's early birth, we expect that with careful monitoring, next time I should be able to have a normal full term pregnancy.  I will also soon be the proud owner of a Continuous Glucose Monitor, which I will start wearing to help monitor my blood sugar now and during future pregnancies to help keep a closer eye on my blood sugar and avoid a similar situation. When you have experienced a traumatic end to your pregnancy, it certainly makes the idea of future pregnancies a bit terrifying, so I think it will be a while before I sign myself up for 40 weeks of worrying. Oh, and I would really like to enjoy sleep again for at least a short while!


6. Why are you still pumping if you have so much frozen milk?

Because I'm a glutton for punishment?  As much milk as it appears that we have stored away, we estimate that it would last only about 2 months.  Since Casey's adjusted age is not quite 5 months, we still have a while before she is not getting most of her calorie intake from milk. Trust me, you will probably hear my squeals of excitement resonating across the globe the day I get to retire from the milk making business.


7. Are you going to sue your doctor?

No. While I do believe that it could have been caught earlier, I am not interested in playing the "blame game."  At my 26 week appointment (the day we discovered I was in labor), I was given my glucose drink, which is pretty standard.  While I had called earlier in the week with concerns that I was vomiting again, until the previous couple weeks I had no real signs that there were any problems with my pregnancy.


8. Why did you go back to work?

I'm a big fan of having medical insurance, especially when you have an expensive new medical diagnosis and your child is born extrememly premature.  I also went back to work because I like to avoid other questions, such as "What flavor of Ramen noodles would you like tonight, dear?" or "Didn't you wear that yesterday?"  Yeah, it wasn't really an option. I am very thankful that I was able to reserve eight weeks of my maternity leave to use when Casey was released from the hospital and that as a teacher I have summers off and lots of nice vacation time to spend being a part-time stay at home mommy.

Whew, I think those are all my most frequently asked questions!  Well, if you made it through all of that, here are some pictures from the week as your reward:


 Trying out some spring clothes!

 Love this happy girl!

 Casey is a big fan of playing with her clothes these days.  She worked hard for that belly, so I figure it is ok if she wants to show it off.

 Giving her best Salute!

 This picture cracks me up because at this angle her feet look like troll feet! 

 Grandma's Sweetie!

 Checking out her Taggies blanket

 She loves those hands

 Cheering on Daddy's team!

 It is hard to put her to bed when she is this sweet and happy.

 We do have our not so happy moments.  Casey says "No, I don't 'got hockey?' because you people won't let me go anywhere!" 

 Just to prove I am a natural blonde (and because I apparently have no secrets left in this world), the above is how I sent my child to Gigi's in the morning.

And here is how she returned...
Yeah, definitely put her shirt on backward!  In my defense, on every other outfit with buttons and snaps they go in the back!  What can I say, it was Friday, and I was really sleep deprived. Thanks Mom, for not even bringing it up!


Sunday, March 18, 2012

Roly Poly

The big news of Spring Break is that our girl did it...she is officially a roller!  We have been working on it all week, and she has now rolled from her tummy to her back about 6 times.  She isn't consistently doing it yet, but we will take it!  Our little Roly Poly is also getting close to rolling from her back to her tummy.  We have had so much fun being home this week, and Daddy even took two days off to hang out with us also!  She had some good appointments this week, and continues to be a total show off at every SST appointment with her motor skills development.  I have a strong suspicion that she will not qualify again when it comes time for her reevaluation.  Casey had a great weight gain of 7 and a half ounces last week, and her new weight is 12 pounds 14 ounces.  Since her weight is so good (almost the 50th percentile for her adjusted age), we have made the decision to cut her Nutrition services down to every other week with a plan to cut down to once a month by this summer if she transitions to baby food well.  We are also planning to introduce rice cereal in just a couple more weeks at our next visit with our Speech therapist.  Our therapist thinks rice cereal may also help with Casey's spit-ups, which are back with a vengeance lately.  Casey was able to get in for what is most likely her last Synagis shot, and our Pulminologist expects we should be able to start venturing out with her in late April or early May if the RSV numbers continue declining.  Can I just tell you how nice it will be to go out in public (and to get a break from cooking when we can actually eat in a restaurant again)!!! 

Our other big change this week is that with the encouragement of several specialists and doctors, we have decided to try to wean her off the three hour feeding schedule.  For about a month, she has been eating every three hours six times a day and taking close to 4 ounces at each feed.  For a baby her age, we would like to see her taking more at every feed and eating fewer times a day, and we really would like for her to start communicating to us when she is hungry.  Our hope is that by spacing out her feeds a bit more, it will increase her daily volume (and we also suspect that some of her feeding aversion and the reason she may not be eating more than the four ounces is because she really is just not hungry every three hours).  I will admit, I have been really hesitant to try this because when we have attempted cue based feeding it in the past it did NOT go well.  There were times when I was convinced Casey would go the entire day without eating if we would have let her.  It is only our second day on the new schedule, and so far she is taking in the same daily volume she had been with six feeds, so maybe this time she is ready???  I am cautiously optimistic!

I will admit, I was a little bad this week about taking pictures.  I also have been letting Casey live on the wild side while we were at home and go without pants (truth is she is outgrowing her 3 month clothes and I was trying to get a couple more wears out of some of the onesies).  Hang in for the next few weeks though, because mama was at Target the other day and couldn't resist some of the new spring stuff. The Doodle is going to look c.u.t.e when she debuts her spring wardrobe!  Here is all the latest cuteness from our girl:

Blue-eyed girl

 Ready for the doctor's office

 So sleepy

 Less than amused with me

 One of Casey's favorite "tricks" is to stick out her tongue at us.  I think we may regret teaching her this one day soon.

 Sic 'em Bears!  Seriously this kid is a good luck charm!  Both Mommy and Daddy's teams made the Sweet Sixteen this weekend when she was dressed to cheer them on.  I would love to have shown you her Marquette outfit, but well, I'll just say she had other plans for it while my camera was charging. 

Tuckered out after a day of basketball!

In case you needed proof that she is indeed rolling, I sort of caught it on camera.  Don't blink or you'll miss it.  Little stinker is fast, and she is completely unimpressed with herself once she rolls!




Wednesday, March 14, 2012

Not So Newborn Pics

Since she was technically over 5 months old when these were taken, I refer to these as Casey's Not So Newborn Photos.   After spending her first four months in the hospital and then having several scheduling conflicts with our original photographer, it took awhile before we were finally able to get Casey's first professional pictures taken (what, all my cell phone pictures weren't good enough?).  The fabulous Alyssa Maisano saved the day when she was able to come out to our house and capture all of our sweet girl's beauty!  Our little social butterfly was not too cooperative as far as sleeping goes so that we could actually pose her, but Alyssa was still able to work her magic and get some great shots. She was so accommodating with all our wardrobe (and headband) changes, and we are so happy with how beautifully the pictures turned out. It was tough to narrow down to a reasonable number to post, but here are a few of my favorites.  Enjoy!

 Happy happy girl!

 Sleeping beauty

 Checking us out!

 I love the colors in these!

Isn't she gorgeous?

 Ruffled booty

 Chunky Monkey

Casey giving us her best "Serious" face
Little cutie
My first "babies"
She finally fell into a deep enough sleep for us to pose her a little


Our Little Princess

Toe Blooms...my favorite baby girl accessory ever!

Monday, March 12, 2012

To Gigi's House She Goes...

The exciting news of the week is that I am on Spring Break, which means I get to get in lots of extra snuggles with our Doodlegirl over the coming days.  If only I could get a week off after every three weeks of work! I had forgotten how exhausting this whole working thing was (not to mention that I went back at the most stressful time of the year as we are gearing up for our state testing...note to self, February/March would be a GREAT time to have another maternity leave in the way off future...although we saw how things didn't quite go as planned the first time).  I thought I would let you in on how Casey has spent the last few weeks with her Gigi.  Let's just say I have a lot to live up to in order to keep this girl as entertained as she is at my mom's.  Here is a peek into what they spend their days doing:
They play dress up
 They have some play time
 They sometimes get a little fussy...especially when Gigi starts modeling her crazy shoes
 They watch some cartoons
 They do some eating
 They work on tummy time
 They play with favorite toys
 They take some naps
 ...and nap some more

 They read some books

 They play some music

Seriously, this kid is going to be begging to go back to Gigi's next week.  Especially when she realizes how many appointments we have lined up this week!  We had our first of many today, which was her initial follow up with the Developmental Pediatrician.  The doctor was very impressed at her progress since she last saw Casey at the hospital in December, and said she is seeing mostly 4 month skills (which is right on target for her adjusted age!).  We were expecting that they would do another scan to check on her grade 1 brain bleed, but since she is not displaying any signs that the doctors found concerning, they felt it was unnecessary.  They will see her again this summer, and then will continue to follow-up occasionally between now and when she starts kindergarten (Umm, I prefer not to think about that WAY far off date when my baby will not be a baby anymore!).  Last week's appointments went well, and she celebrated her seven month birthday with a 5 ounce weight gain, for a new total of 12 pounds 6.5 ounces.  Looks like we will be breaking out those 6 month clothes pretty soon!  This week, Casey also has her regularly scheduled appointments with the Dietitian, Speech Pathologist, and her Specialized Skills Appointment.  Fingers crossed she will also get her last Synagis (RSV) shot this week as well.  It looks like a busy Spring Break for the Sattler girls!  Oh, and Brian and I celebrate our two year wedding anniversary tomorrow!  It seems crazy to think it could already be two years! Where has the time gone?  Then again, how do we already have a seven month old?

Here are a few more pics of our sweet girl:

 Little Brian look alike

 Loves her hands

 Get ready for flower headband overload...we have them in light pink

 and in purple

 We have a white one

 ...and a dark pink one (just to name a few)

Daddy's Little Monkey (thanks Morgan and Kyle for my adorable outfit)

 Going for a walk on a pretty day!  Hello 80 degree temps!

 She loves being in the sitting position!