Casey's First Christmas

There is not much new to report since my last post.  Casey's eating has been a little better, and we are hoping it will ony continue to improve. We celebrated her first Christmas at our own home this year, making it my first Christmas to ever spend in Dallas (in the 26 years I have lived here). It was so nice to have a relaxing holiday with our little family, and we are just so thankful that she was able to be home with us for Christmas.  There is no doubt we were definitely missing our extended families, but we did get to FaceTime and Skype with both sides so that they could see our precious girl for themselves. I must admit that I had no idea how much cleaning there was post present unwrapping and cooking when I actually had to do it all myself!  As much as I enjoyed a low key Christmas in my pajamas, here's to next year at someone else's house!!!  We hope everyone had a wonderful and blessed Christmas surrounded by those they love!

As promised, here are the rest of the Santa pictures and a few others from the last couple days:

 My favorite of the Christmas pictures

 Shhh!!!

 Going for the beard

 Sleepy Santa and sleepy Casey

 Merry Christmas from The Sattlers!

 Santa's Little Elf - Thanks Katrina for the adorable hat!!!

Happy girl in her Christmas dress!

Spoiled much? (They weren't really all hers...but almost)

 Caught another smile

I think she is getting bored of pictures!

 Could we look any cuter in our outfit from Gigi?

I get to wake up to this sweet face every day!  Blessed!

One Week Under Our Belts

We have officially had Casey home for one week, and it has sure been a busy one! Overall, she has done well and it has been so amazing to have her with us all the time. She has such a sweet disposition, and most of the time is a pretty content baby (just don't take her paci). At night she already sleeps really well, so well in fact that we have to wake her up to take her night feeds (she doesn't take enough volume at her daytime feeds to skip her night feeds yet). Her eating has unfortunately not been great, and since she has only hit her target volume one day this week, we did decide to reinsert her feeding tube for a few days. The hope was that it would give her a break at night when she gavaged, and she would then have more stamina to complete feeds during the day.  So far, it hasn't made much difference and she has still been pretty inconsistent.  Today we went to the pediatrician for a quick weight check to determine if she is still gaining weight, and since she had gained 5 ounces in the 6 days since we had seen him (she is now 8 pounds, 8 ounces!), he feels that for now she is okay to take a smaller volume and keep the tube out. We will continue to go in for weight checks to ensure that she is still gaining or to determine if we need to make some adjustments.  As for her apnea monitor, she hasn't had any heart rate drops while on the monitor, and so far it has only gone off for false alarms when she was wiggling around and her leads didn't have enough gel.  While it is a relief to have the peace of mind to know she is breathing well when she is on it, the monitor is definitely NOT the most convenient piece of equipment.  It does not have a battery, so in order to use it she has to always be plugged in (making it a real pain and completely useless when driving her to our many upcoming doctor's appointments).  It is also pretty annoying to always have to plug in your baby, and when she is not connected she has two foot long cords dangling at all times.  Our dogs will also appreciate when the monitor is gone, since it alarms to reset every time it is turned on, and the ear piercing noise is about to send them over the edge!  Many people have asked how the dogs and cat are adjusting to a new baby, and while we have seen a few behavior changes, they mostly are handling it well (although I will say they seem to prefer her best when she is not making any noise).

Our biggest prayer request is still for her feedings, most specifically that they will pick up again and she will continue to gain wait, enabling us to keep her feeding tube out permanently.  Our new schedule hasn't left much time for picture taking, but I was able to snap a few cute ones that I will post below.  I also have a few to share from Casey's first visit with Santa (my friend and co-worker happens to know Santa pretty well, and she arranged for us to come to her house for a private Santa session).  Thanks Trisha and Tommy for making it possible for our preemie to see Santa during RSV season (and for the amazing photos and being so accommodating with our wardrobe changes!!).  Check back later this week for the rest of the photos with Santa and for pictures from Casey's first Christmas (and be sure to check your mailboxes later this week). I couldn't spoil Christmas presents by posting all of them just yet (sorry grandparents, no sneak peeks of our favorite ones!)

She makes one adorable snowman!

Fresh out of the tub!

Future ballerina??

Hello world!

Daddy's lucky basketball charm!

My wubbanub rocks.  It keeps my paci in my mouth for a whole 30 seconds at a time!

Snoozing!

Thanks Aunts Dazie and Mazie for my adorable bear!!!

So sweet

Who is this guy?

 Posing in front of the tree

 We definitely "Believe in Miracles!"

It wouldn't be a visit with Santa if there weren't some tears

Our Special Delivery



Home Sweet Home

At long last we made it home...after 130 long days in the hospital, many weeks on a ventilator, one pleural effusion, several infections, 2 months of poky eating, and one hernia surgery later, we finally brought our sweet girl home with us yesterday! Now for the best part, check out this picture...

Notice anything missing? Yep, our little one figured out how to eat, and was able to come home without her NG (feeding) tube!!!

No one is certain what made her start eating (possibly the hernias were causing her feeding discomfort, the 3 day break from eating surrounding her surgery gave her the rest she needed, or maybe she finally woke up and figured it out like so many people said would eventually happen), but on Friday night she started taking her minimum at almost every feed. Since we had to remain in the hospital for several more days to wait out a brady that she had on Saturday evening anyway (we think a reaction to her 4 month immunizations), the doctors decided we had time to pull her feeding tube to see if she could continue completing her minimum without relying on the leftovers through her tube. Although she still isn't completing enough volume for us to say with confidence that we are out of the feeding woods yet, it was enough to send her home without the tube for now. Much to our relief, the doctors did order for her to go home on an apnea monitor, and she will be hooked up to it much of the day and anytime she is sleeping in order to alert us to any heart rate drops. We had a good first night (I think Casey slept a whole lot better than mom and dad) and day at home, and although she hasn't eaten as much as we would like, we saw her new pediatrician today and he was not concerned about her intake.

We know many of our friends and family are anxious to meet our sweet daughter, and of course we look forward to the day when everyone can meet her as well. Unfortunately, due to RSV and cold/flu season and the potentially life threatening effect they can have on preemies, our doctors have been adamant that we remain in isolation other than doctor's appointments and very limited family and friends who have not recently been exposed to illness. I definitely plan to keep my blog updated with all her latest happenings so that everyone can continue to get their fix of Casey and all her cuteness.

For now, we ask that you continue to keep us in your prayers, as the Doodlebug still has quite a long road of follow up appointments and feeding goals ahead. Our biggest prayer needs are for Casey to continue to make progress with her eating so that we do not need to reinsert a feeding tube, for her health and ours during RSV season, that she not continue to have heart rate drops so that we won't need the apnea monitor long term, that the bleeding in her brain is healing, and that her transition home will continue to be smooth and uneventful.

Oh, and if bringing our daughter home wasn't enough good news yesterday, we found out last night that Brian passed the exam he took in October, and he is now a Professional Engineer!  I will leave you with the pictures of her last few days in the hospital and Casey's long awaited homecoming:

 Getting ready to leave!

Officially unhooked from the monitor!

 Dressed in her homecoming outfit

 

 Mommy was holding her breath that the nasty green vitamins she just finished weren't about to come up on her new outfit

The homecoming outfit I made for Casey (that was almost too small!)

Mommy's girl in her first official bow!

 The Sattlers saying goodbye to Presby Dallas

 All loaded up in her carseat

 First bottle feeding at home

 Getting cozy with Mommy

Snuggle time

 This is the pink colored "It's a Girl" Hot Chocolate that Brian's mom found for me to give my students on Friday, which was my last day before I left for Maternity Leave (Part II).  They were so excited!  Excuse the lame poem as I am no poet, but it was the best I could come up with.

This was taken the night before she was released.  Notice her arm pressed up against the glass as if to say "Let me out!"

"Never Trust a Preemie..."

It is a saying we have been hearing for the last 126 days, and we were reminded of its meaning Wednesday when our little one threw us another unexpected curve ball, this one involving surgery. On Tuesday afternoon, the doctor called to say she found what she thought was a hernia during Casey's daily exam. She ordered an ultrasound, and the results Wednesday morning confirmed a hernia that was adhering to her left ovary (and they suspected she probably had one on both sides). By that same afternoon, she was in surgery. Although it was not an emergency, since she would have to be operated on at some point in the near future, we opted to have the surgery right away to avoid coming back as an outpatient. The surgery was successful, and the surgeon assured us this is an extremely common procedure in preemies (36% for preemie boys, but he didn't know the stats for girls). After surgery, she was sent back to the NICU until she could be weaned off the ventilator. Probably one of my toughest moments throughout this entire experience was walking in that afternoon to see our baby back on a breathing tube. Initially we were told that she would probably come off about an hour post-op, but it seems the surgeon was a bit optimistic. Her numbers looked good in all her labs throughout the night, but she had a few bradys after the surgery and the doctors decided to keep her on the vent through the night until they were sure the anesthesia had completely worn off and she was waking up. It was a tough night waiting to hear that she was back to breathing room air, and just being in the NICU brought back a flood of emotions from the past 4 months (and now next to the tiny little ones, MY child was the "big chunker" that I used to refer to the term babies as).  Luckily, one of our old primary nurses was assigned to Casey both nights she was there, and we had lots of other familiar NICU faces that dropped by to check in on her and exclaim about how much she has grown in the two months since we have been in Special Care. Thursday around noon they were able to extubate her and restart her feeds, and on Friday she was moved back to Special Care. She is back to bottle feeding and so far is doing pretty well with her feeds, so the doctors think it is possible that the hernias were causing enough discomfort that they could have been contributing to her feeding issues. 

Casey also had her 4 month birthday (1 month adjusted) on the day of her surgery, and that same day she joined the 8 lb club (8 lbs 3 oz as of today). Her eye test went well this week, and the ROP is now considered Stage 1 in both eyes, meaning her eyes are showing progress on their own, and he won't need to see her again for 6 weeks. Casey's doctor also decided to try her on a 5 day trial of Prevacid for reflux to see if it would help with the discomfort she has exhibited during feedings, but their hope is to discontinue it quickly if it is not absolutely necessary. She also had her 4 month immunizations, and she is scheduled to get her first Synagis shot in the next couple of days, which for high risk preemies, is so important in preventing RSV during cold and flu season.

The plan is to watch her throughout the weekend, and assuming she continues to recover from surgery well, they will most likely discharge her at the beginning of the week. Right now our biggest prayer needs are that Casey will remain brady free (since it has been determined that we are going home on an apnea monitor she needs to be 3 days free of heart rate drops, and she has had a few post surgery), that she will continue to recover well from her surgery so that we can move forward with discharge, and that Brian and I will feel comfortable in our training over the next few days as we learn all about inserting NG tubes, running feeding pumps, and using apnea monitors, so that we are prepared to care for our sweet baby at home.
 
Here are the latest pics of our big girl:

Adorable and she knows it!

"Wait, what do you mean Mommy is going to insert my feeding tube this time?  Traitor!"

Monkey feet!

If you haven't noticed, I am a sucker for all outfits with things on the booty.

 Chillin' in the bouncy seat

 Stretching out

Her frog pose

Last weekend my grandmother came in town and got to see Casey for the first time since she was only a few days old.

Four generations of first born daughters

This is just too shocking not to post.  Above is the freezer we bought in September.  It is now completely full...of milk.  Apparently since I can't sing, and I can't dance, my talent in life is feeding my kid.  Now to solve the dilemma of what to do with new milk...

Our nurse left us a little note when we came in after Casey's feeding.  It says "I completed!!!" This was only her second attempt at bottle feeding again after her surgery, so we were all pretty excited!