Smiles All Around

Today we had the latest in our visits to the O.T. to chart Gwendolyn’s progress feeding via a bottle. Things went marvelously. Through the past two weeks, our trial run of 1-2 bottles a day with an ounce of thickened milk went very smoothly. So, this time we tried Gwen on a full feed, 100 milliliters, thickened. She downed that feeding without incident. Ergo, we have now graduated to five bottle feeds a day with a similar 100 milliliter bottle thickened to honey consistency. As a result, the overnight continuous feed will only need to run for seven hours as opposed to the nine that it has been.

The other VERY positive news is that Gwen went from the third percentile two weeks ago to the 50th. So, not only has she been doing well with oral feeds but she’s got her weight back up to where it should be. So, now we don’t have to worry about being as aggressive with increasing her feed amounts each week… we’re a little closer to letting nature tell us when she needs her feed volumes increased.

Anyway, the photo at the top of the blog is from this afternoon’s feed. Excuse us for being this excited over a silly little picture of a baby and her bottle but this is the first full-feed Gwen’s had in a bottle since the beginning of November.

Talk to you all soon.

Braelyn Lets Her Fingers Do the Talking

Well, Heather put these on Facebook earlier so it will be redundant to some... But this series of photos is too funny not to post. We like to think this represents Braelyn McKee putting her new-found discovery (her index fingers) to good use... After all, is there a better fit in the world for a free finger than a remote control? BTW, we are pretty sure that Braelyn perfected this move by watching her Dad! We hope you find them as funny as we do...

Zzzzzzzzzzzzzzzzzzzzzzzzz!!!

I'm up... I'm up!

What's with all that racket? Some of us are trying to sleep around here!

Hey Ma... Look What I Found!

Well, our weekend was pretty mundane again. We did take the girls "out" for their first real restaurant experience together. Luckily it was a Joe's Crab Shack and some regular intervals of flashing disco lights on the ceiling kept the girls entertained. In fact, they did so good that Mom and Dad might just install a mirrored disco ball in the nursery!

;)

Seriously though, we were VERY pleased that the girls did so well and we might even plan an outing to the mall soon so we can partake in Dad's favorite pastime of people watching.

Speaking of watching things, Braelyn has had quite a month of enlightenment. First, she realized she had hands. Last week, she found her feet. On Sunday, she discovered her index fingers. We swear, that girl spent hours yesterday with her finger extended as she gazed at it in an all out stare-off... We wonder who won?!?!?!?

That's our quirky little Brae-Bear.

For her part, Gwendolyn has realized that sometimes, in the middle of the night when your binky falls out, it's okay to suck on your fist for the two minutes it takes to fall back asleep. For this revelation, Mom and Dad thank you Gwen!

I suppose that's all for now.

Poor Braelyn

Yes folks, Dad’s at it again! Leave it to him to get the crazy idea that by “accidentally” putting Braelyn’s diaper on the incorrect body part, he’d be expunged from future “bottom” cleanup tasks.

Alas, the plan backfired when Mom suggested he get as much practice as possible to ensure this “snafu” doesn’t happen again!

What’s a guy to do?!?!? (can't wait for Braelyn to happen upon the blog in her formative teenage years and plot her revenge... it will be much deserved indeed).

;)

At least Gwendolyn still acknowledges Dad's existence (for the time being that is)!

Sorry but we've had to be so serious on the blog thus far that we decided to interject some humor for once. We guess it just HAD to be done.

Slacking on MLK Day

Wow... where did the weekend go?!?!

It seems like I was just getting home from work on Friday evening and the next thing I knew it was Monday night and my eyes saw the vision above I walked into my bedroom to get ready for sleep.

Not that I'm complaining! Besides, the girls had a great weekend without a single incident... we've come to enjoy lazy weekends!!!

In any case, as promised you'll find another picture from our three-month photo session below. I'll try to get another one up later this week along with an update. Sorry again for the delayed post.

Jumparoo Love & An Angelic Thanks

***DISCLAIMER: There is no truth to the rumor that we had to immediately put up this post so that we could show off another photo... We swear! ;)***

We forgot to mention in today's initial post that we received a Jumparoo in a delivery over the holidays. Unfortunately, it didn't have any information included as to whom it was sent by. So, while we aren't for sure the individual(s) that we should thank, we wanted to be sure and put it out there so that you didn't think of us as ungrateful. In fact, Mom has been on Dad's case for a while to purchase one for the girls so it was a great buy for the Castellanos indeed!!!

Feel free to write us a comment to this post if you sent the Jumparoo our way so that we can offer a more proper note of thanks!

And while we are on the topic of gratitude... It seems that the girls have a guardian angel out there (or maybe it's a group of angels, we're not entirely sure). This cherub has given our girls the gift of “Sunshine.” We appreciate your desire to remain anonymous but wanted to thank you so very much for the kindness you’ve bestowed upon us... We can't even begin to properly express our appreciation!

Still Doing Fine

Well, we still have nothing but good progress to report.


Both Braelyn and Gwendolyn are doing fine and now weigh about 10 pounds each. Last night, Braelyn even zonked out until about 6:30 AM... So, she basically slept all the way through the night. Since Gwen's on a continuous feed herself at night, she rarely gets roused in the evening after she's gone to sleep. That's good news on the sleep front for Mom and Dad. In fact, the only time Mom had to get up last night was once to pump.

Both Mom and Dad get MLK Day off so they are looking forward to spending an extended weekend with the girls.

Grandma McKee is still looking after the girls until the end of next month. If you remember, that's when Gwen should finally have her jaw extension devices removed and will be cleared for regular daycare... the good news is that the girls haven't really had a double-team meltdown while at Grandma's so hopefully that trend of good behavior continues. In fact, it sounds like Grandma and the girls have had a rather good visit each and every day.


Well, just wanted to check in and share one of these photos from our 3-month picture sitting.


I'm sure we'll find an excuse for another post sometime this weekend so we can share some more of these adorable photos... Not that we are bias or anything!


;)


Talk to you then.

Gwen’s Ol' Buddy Returns With Success

Well, Gwendolyn had a great visit with the Occupational Therapist today. As you can see from the photo, she got some nourishment thanks to a bottle. It had been about a month since that was last tried. If you remember, she sounded so bad during that go-around with a bottle feed that the O.T. quickly ended the experiment and ordered the insertion of a permanent feeding tube to replace the NG-tube that had been administering feeds through her hose.

In a way, there was a lot of apprehension from Mom and Dad about today’s visit. Our last visit to the O.T.’s office with Gwen was also for a “routine” feeding observation… But that ended up with her being unexpectedly admitted to the hospital. This time, things honestly couldn’t have gone any differently.

Today, the O.T. gave Gwen an ounce of breast milk thickened to the consistency of honey. This was the thickness that Gwen did the best with during her swallow study in November. In less than 10 minutes, she devoured the liquid. Never once did she give off her patented pre-jaw extension squeak or choke. The O.T. was very impressed and said that she was amazed at how well Gwen did.

Moving forward, Gwen will have an once-feed similarly thickened between 1-2 times daily. She’ll then have a follow-up in a couple of weeks to chart her progress. This is obviously a step in the right direction. We’ll caution that if this works, we unfortunately won’t be able to have the current feeding tube removed altogether and only bottle feed until she’s able to have another swallow study. And, because of the radiation involved, she can’t partake in one of those again until the end of May at the earliest. This is done because they need to ensure that Gwen isn’t aspirating formula into her lungs anymore and that can most accurately be done via this swallow study. Still, it is obviously an encouraging development and one that we hope becomes more and more frequent until she can get the feeding tube removed all together.

For those optimists in the group, this is a case of the frustrations this last month being worth the strife. The Lord indeed works in mysterious ways!!! Obviously, we wish Gwen didn’t require that second jaw surgery when the first one unexpectedly shattered. It would have been wonderful to have had her at home for Christmas and reunited with Braelyn. Still, the additional length gained in her jaw when her first device broke and the second extraction procedure was necessary has made a tremendous difference.

It was evident by the x-rays the doctors showed us last week that her throat was considerably less obstructed thanks to this additional procedure. Today, it became even more obvious how much better her situation had become as we watched Gwen feed. That previous bottle feed Gwen had that went so wrong took place after her jaw was fully extracted by the initial device. Knowing how poor she did during that feed and fully aware that she was already extended a complete 20 millimeters at that point, it’s obvious that while the first procedure fixed her breathing difficulties it really didn’t help her feeding issues. Now, there’s so much progress and hope that these extra 12 or so millimeters gained by the second jaw extraction have also positively affected Gwen’s feeding limitations. It is amazing to think how much influence can be had by something about the length of a centimeter.

That’s about all the update we have for now… While we are a long way from the summit of Gwen’s journey, we’re a lot closer to finishing our climb atop this mountain.

Talk to you all soon!!!

Be Back Soon

Well, Saturday's nearly complete and that means that tomorrow morning Chuck will be on a flight back home to be with his girls. It's always nice to visit extended family but you really appreciate just how much you care for your wife and kids when they aren't just in the next room. As weird as it may sound, it's my first trip away from the three women in my life and I miss them something terrible!!!

Still, no matter how homesick I am it was great to be here for Ava Bella's baptism. As you can see, my niece looked quite precious today... as did her Godfather!

;)

Talk to you all soon.

Couldn’t Resist

Heather took this photo of Braelyn the other day and it just cracks me up every time I look at it... So much so that I thought I’d share it with you all.

For some reason, the way she’s posing with her arm bent like that screams 18-wheel truck driver. I just want to get her a trucker cap and throw a CB Radio in the photo - but I’m sure it’s just me. ;)

Stay warm out there folks and we’ll talk to you soon!

We’re Still Doing Fine

Yesterday, Ms. Gwendolyn Marie had a new set of x-rays taken to chart the progress of her latest jaw extraction. The good news is that she got thumbs up from the plastic surgeon. It was truly amazing to see how much more open her throat is now as opposed to when the process was first initiated. The doctor was so pleased with how her jaw is currently aligned that he’s scheduled her for a February 22nd removal of the devices. At a mere seven weeks from the conclusion of the pin turning, this is on the short end of the 6-10 week timetable we were initially given. Needless to say, we were ecstatic with that bit of news.

Gwen and Braelyn continue to get reacquainted with one another. Mom (who seems to be on a week-long series of snow days from school) reports that they spent an hour together in the same crib this afternoon gazing aimlessly at their mobile. It stymies the imagination at how such a simple device can nearly paralyze a pair of three-month olds with its wondrous music and movement!

;)

Seriously though, Braelyn’s done quite well even though she’s no longer an only child. And Gwen really is thriving at home. In fact, she has even got her feeds increased weekly now because she’s doing so well… they want to be sure Gwen continues to gain weight even though she’s currently reliant on just a feeding tube for nourishment. Speaking of which, Gwen will have an appointment next week to educate Mom and Dad on administering abbreviated feeds orally with the help of a thickening agent... that's assuming they feel that she can handle it. You might remember that we tried this before the jaw surgery and it didn’t go too well but the plastic surgeon thinks she might do better now that her throat has had the narrowing obstruction corrected.

We shall see.

On a side note, Dad leaves for Florida tomorrow. His niece Ava is getting baptized and he’s proudly been selected as her godfather. Needless to say, in an Italian household, there are few more important titles… Hopefully, no one will be "sleeping with the fishes" Luca Brasi-style while I’m there!

;)

The funny part is that with this deep freeze gripping the nation, a trip to the Sunshine State in January isn’t what you’d typically think. Still, since Kansas City is due to stay in single-digits all weekend long, it’ll be 30 degrees warmer easily down south.

As a result of Dad’s trip, Mom’s going to be flying solo with the girls for two nights. Unfortunately for our dog Joker, that means he’ll be an island surrounded by a sea of estrogen until Dad returns on Sunday between Mom, the girls, our other dog Angel and Blue our cat.

And so it goes.

Playing Catch-Up

Well, somehow the long holiday weekend has evaporated... nearly as quickly as a newly shoveled driveway did all week long in Kansas City thanks to a deluge of snow. Heather and Chuck are back at the salt mine tomorrow. Until Gwendolyn gets her jaw extension devices removed, her and Braelyn will be chilling with Grandma McKee. Between the care for Gwen's pins and her feeding tube, we've been told that there's still a high risk of infection for her. Therefore, we decided it would be best to give the girls a reprieve on daycare until Gwen's pins are removed.

Speaking of Gwen's jaw, things are nearly complete on that front. Her right pin has finished turning and the left one should very shortly. Once they are both done, it will just be a matter of waiting for the new jaw growth to fill in and heal. Likely, by the end of next month her jaw will be set enough that they will be able to remove the device altogether... this time for good we hope.

We did have a great weekend with both the girls at home again. Gwen has seemed to get more and more comfortable as the days past. At first she was pretty skittish at any loud noises or quick movements. In a house with a loud Italian father, two dogs and a cat, you can imagine that there were plenty to go around... but at least now Dad can sneeze without freaking his poor daughter out.

;)

Some interesting observations... the girls seem to have a night and day outlook on getting their diapers changed. As we noted before, when Barelyn is laid on the changing table she immediately breaks into a smile, often laughing. Gwen on the other hand screams so loudly that she almost forgets to breath sometimes with the shrills she unleashes. On the flip side, Gwen does tend to have cooing "conversations" with us quite often while Braelyn's vocal times are much less frequent or lengthy right now. Well, just in case any of you wanted proof that they aren't identical, there you go.

Okay, since we've got work tomorrow and the girls are still mastering sleeping through the night (instead of a Maters Degree on the topic of sleep we'll take a G.E.D. right now, trust us!), I suppose we'll sign off for now.

Hopefully we'll talk to you all real soon.