The Lord Sure Does Answer Prayers in Strange Ways

As promised, this is a mid-week entry that includes some shots of the girls from their last sitting with the photographer. We'll put a couple more of each girl individually at the end of this entry. Enjoy them because we are so blessed to able to show off a pair of beautiful girls like Braelyn McKee & Gwendolyn Marie!

However, we could not have predicted that this entry would be yet again typed from a room at Children's Mercy Hospital.

You see, we got a call from daycare earlier this afternoon that Gwendolyn had stopped breathing during her tummy-time exercises. While she eventually regained her breath, Gwen stopped long enough to change color and cause the center's nurse to frantically be ushered into the room to check her out.

By the time that Mom and Dad arrived, Gwen was her normal pasty-white self but still noticeably laboring through the aforementioned congestion as she attempted to breathe. Since she was having obvious problems but was no longer in immediate distress, we took her back to her pediatrician. She checked Gwen out and said that while her vitals were all fine and her lungs sounded normal, today's breathing issues combined with her history as well as the sleep study results from last week made her feel as though the best thing would be to readmit Gwen back to the hospital.

So, here we sit yet again. In the short term, there are a myriad of tests on deck. The doctors told us today that it is their goal that they can get to the bottom of Gwen's increasingly concerning breathing problems before we go home.

In a way, Mom and Dad are very much at ease with things. We've been praying for Gwen's sake that we could weed through things and come to a final decision on her breathing problems without having to deal with a long, drawn out process. So, in a good way even though she had a scare at daycare that caused us to to get admitted back to the hospital, we really do feel like this is the best thing for Gwen. Again, she's not currently in immediate distress which is a positive... and even if she did have another serious flareup, few places would be better to experience those and receive immediate attention. Also, several of the doctor consultations and tests that we were struggling to juggle our work itineraries around will be preformed in the here and now. The hope is that one way or another, we can come to a consensus and do something to benefit Gwen that we all feel comfortable is medically in her best interest.

Again, while it is far from the final result we want and we still pray it isn't ultimately necessary, we felt the biggest issue on the topic of Gwen having a tracheotomy wasn't just the procedure itself. Our apprehension also lied with the neglect to show us that all the other avenues truly had been exhausted and that it was something really needed for Gwendolyn. Unfortunately, we're coming more and more to terms with the fact that Gwen's breathing isn't just slightly off kilter as we initially felt. Instead, it is significantly constricted enough that she's having issues both at night (as the sleep study suggested) and now during the day while she's awake and coherent. The source of that is still something we hope can be found and fixed without a trach being necessary. And the congestion, no matter if it is the cause of these breathing limitations or not, is also something that we hope will be solved thanks to this stay as well.

So, instead of being concerned that we are back in the hospital, we hope that you all embrace it as we've decided to. It's merely another step in Gwen's journey that we hope results in an answer to her latest challenge at hand. And most importantly, it is something that is ultimately in God's hands... Of course, we'll keep you all posted as updates arise. Now, we hope you enjoy those two extra photos below that we promised !!!

An Update We Wish We Didn't Have to Give

We are sorry for the lack of activity on the blog this past week.

Unfortunately, we heard back sooner than anticipated with some bad news regarding Gwendolyn’s sleep study and it took us a little while to digest. The Pulmonologist called to tell us that Gwen had 205 instances of “obstruction” during the course of her sleep study, with 61 of those being defined as an apnea. After conferring with our Plastic Surgeon, the Pulmonologist felt that a tracheotomy is the only solution. Basically, the Pulmonologist said that they have exhausted all the other avenues that could be a cause for this apnea based on her previous tests and surgeries. And the Plastic Surgeon noted that Gwen's jaw is now in a perfect location which should no longer be causing any issues. As a result, she said this was our last resort.

We were a little concerned that the heavy congestion we mentioned earlier Gwen's been experiencing might have been a direct result of these breathing obstructions. After all, while we don’t hover over her crib at night, we’ve been around Gwendolyn plenty when she sleeps and never felt a concern that she wasn't breathing. In fact, since her last round of jaw extenders were inserted, Gwen has never exhibited any breathing difficulties. In addition, Gwen has truly thrived since her last stay in the hospital concluded, which seems to contradict the notion that she's having breathing issues again. For instance, any oxygen percentage tests she's had since being discharged have all come back great.

When we pressed the Pulmonologist about this, she quickly dismissed it, as well as the majority of our follow-up questions. While there were several things that we didn’t agree with in the diagnosis, the one piece of common ground we reached is that we need to be sure IF Gwen’s experiencing cases of apnea that it hasn’t begun to adversely affect her. So, in the short term, the Pulmonologist ordered oxygen for Gwen to use overnight and booked a heart echo in a couple of weeks as her not breathing over the course of the night could be putting undue stress on the heart.

Since the tracheotomy is something that might never be reversed and is just one more in a series of hurdles for poor Gwen, we obviously wanted to be sure we truly have exhausted all of our other options without jeopardizing Gwen's health in the meantime. So, we started making several calls and asking others opinions. For those of you that have followed this blog in the past, you might recall our uneasiness over this particular Pulmonologist (she's the one that was adamant this fall that Gwen needed additional brain surgery to correct her breathing, which ended up not being the case). As we began the process of consulting with others, we felt that it would be in Gwen’s best interest to be cautions moving forward. As a result of a multitude of differences of opinion we’ve had, we have requested that Gwen be assigned a new Pulmonologist.

Moving forward, we are going to make sure Gwendolyn’s state of continuous congestion gets fixed first before we go for a follow-up sleep study. Again, if that has anything at all to do with the negative results, we want that issue eliminated first. So, we’re going to see our Pediatrician once again tomorrow. If she has no solution again this time, we are going to ask that she refer us to an allergist. The pollen count this spring has been off the charts and there has to be some source of this month-long congestion.

We’ve also decided that we are going to seek a second sleep study in a different practice, likely out of state. Our concern is that by making waves and advocating on behalf of our seven-month daughter, we might have become labled as “those” parents at the hospital and indirectly caused some prejudice toward Gwen… but if being “those” parents means that we are at ease with any decision moving forward on Gwen's future, then we are okay with that.

So, that’s the unfortunate update on Gwen’s sleep study. As for our family other than that, we are doing pretty well all things considered (as the photos in this blog entry show). Needless to say, this was all a little bit of a downer but we still feel like we are doing the very best by our daughter. Regardless of the ultimate outcome, we'll at least feel totally comfortable with the ultimate decision... And if after all this the recommendation is still that Gwen should be trached for her own good, then we'll be prepared to do that. However right now, we can't say that we feel like that's the case.

For those of you that are interested, we are going to post some of the girls’ six-month photos that we just got back in our mid-week blog update this coming week... But the photos here were just too cute to exclude so we had to post them first.

Hope all’s well in your world… talk to you soon!!!

Jailbreak

Well, Mom and Gwendolyn have busted out of the hospital and are on their way home. Unfortunately, we've been told it will take at least a month until we know for certain what the results are.

One negative is that Gwen's still fighting off a cold so she was rather congested again last night. As a result, her breathing was more labored than usual and she awoke several times during the night, which she rarely does at home. When she did wake, she kept trying to rip off the sensors that were taped all over her tiny little head… So, mom had to hold her hands down most of the time, which only upset Gwen even more. Hopefully that didn’t significantly alter the test results in a negative fashion.

On a positive note, while her oxygen levels did dip at some points of her sleep, Gwen brought them back up herself and never needed the assistance of oxygen-enriched air. Also, the nurse was confident preliminarily that Gwen doesn't have central apnea. That basically backs up what the neurologist and the plastic surgeon told us when they initially suggested Gwen’s jaw extension because they felt the issue was the result of a physical defect not a neurological one.

Hopefully it also eliminates the possibility that her breathing issues (and any other limitations that could have popped up in the future) being the result of a chiari malformation. That is what the pulmonologist kept trying to tell us was the source of Gwen’s issues this past fall. If you remember, that can be a common issue with kids that have the more severe case of spina bifida that Gwen did (meningomyelocele). It can typically affect the cerebellum and brain stem, which is where the base of the brain meets up with the spinal cord. While her spina bifida's likely effected that area in some ways, this test seems to suggest it isn't sever enough that it's causing issues with her essential body functions (such as breathing) or, hopefully, her motor skills. Since Gwen’s already got so much she’s going to have to deal with as she matures, we were hoping and praying that this wouldn’t be just another hurdle that got added to the list... and it appears in the interim that our prayers have been answered there.

So, while we won’t know the final results for a little while and even though Gwenner had a rough go of things last night, there’s at least some cause for optimism.

P.S. A BIG thanks goes out from Dad to Braelyn for sleeping through the night and at least helping him catch up on some sleep!!! Hopefully Mom will be as lucky this afternoon.

A L-O-N-G Weekend Comes to a Close

Wow, so this weekend has been full of screams, cries, fevers, a lack of sleep by parents and children alike and has now culminated with Gwendolyn getting wrapped up like a mummy. It’s all like an episode right out of the “Twilight Zone.”

Unfortunately, the weekend’s malady actually started a little earlier in the week. Mom got a call both on Thursday and Friday afternoon from daycare that Braelyn wasn’t feeling well. Two trips to the pediatrician later, all the direction we really got was that she doesn’t have an ear infection, that it’s likely a virus, that all we can give her to make her feel better is some infant Tylenol and that we should call in five days if her fever hasn’t subsided. Wow, that was definitely worth a pair of co-pays!

So, poor Braelyn is still not quite feeling up to her normal self and is constantly fighting a seemingly endless seesaw of being too warm and then an hour later too cold… but as you can see, she’s still pretty cute even when she’s under the weather.

As for Gwendolyn, on Sunday evening Mom took her for an overnight stay at the hospital while Dad manned the homestead and cared for Braelyn’s needs. Luckily, this latest trip to the hospital was a scheduled visit as Gwen gets monitored during a sleep study. The purpose is hopefully to verify that the jaw extension procedure she underwent earlier, and that has now healed, was successful in eliminating any breathing issues. So, she got hooked up to a series of devices to make sure she isn’t experiencing any spells of apnea during the night.

The above picture does all the talking as you can see poor Gwen was wrapped pretty tight with tape to ensure that all the readings are as accurate as possible. Speaking of getting accurate readings, you might wonder how we decided to have Mom stay the night with Gwen for this study as opposed to Dad. Well, the sleep study folks informed us when we scheduled the date that they prefer to limit any extra noise as a way of making sure that the study gives a true measurement. As a result, they asked that the parent who is the less noisy at night is that one that comes along. Given the fact that Dad’s been known to shake the roof during one of his patented snoring sessions, he was easily eliminated from the equation.

Honestly, we aren’t positive what the normal turnaround time is on the study. We don’t know if we’ll find out tomorrow morning when she leaves how she did or if someone needs to review the results first. Either way, we’ll keep you posted. Hopefully, her breathing patterns are normal and we can turn the page on that chapter of her list of medical concerns so we can focus on some of the others.

We guess that’s it for now… we’ll talk to you all soon!

Downtime... What Downtime?!?!?!

We do not have much new to report in our mid-week update. Even though we seem to be crazy busy of late, Mom and Dad have been sure to steal some quite moments with Braelyn and Gwendolyn whenever we can... and that is something we are ALL thankful for!!!

A Weekend (Non)Recap

Not a lot to report this weekend as it was busy (like pretty much all of our weekends have become) but uneventful.

First, the girls had their six-month photos taken. Then, Mom took Braelyn and Gwendolyn on a walk around the neighborhood while Dad finally mowed the grass... Unfortunately, that became almost a weekend-long task him. ;)

On Sunday, we went to visit Uncle Kyle and Aunt Susan for a cookout with cousins Madison & Lindsay as well as Grandma McKee. It was especially nice because Grandma had just finished a trip to Iowa so Braelyn and Gwendolyn got to catch up with her.

Speaking of grandparents, Poppa is out of the hospital and doing good. We can't wait to see him for the girls' baptism next month.

So as you can see, it was a great time that kept us all on the hop!

Thinking of Our Poppa

Gwendolyn and Braelyn wish their Poppa a speedy recovery from his surgery later today.

Happy Opening Day One & All

According to the Gregorian calendar today was merely Monday, April 5th.

But according to the Castellano calendar today was a holy day of obligation also known as Opening Day.

As you can see above, Braelyn and Gwendolyn joined dad in celebrating the proper way. The good vibes must have rubbed off too because the Mets kicked off the baseball season on the right foot this afternoon, winning 7-1. Happy Opening Day all!!!

***Your blog fun fact for today is that the Mets own a major league-best 32-17 (.653) record on Opening Day. Let's go Mets!!!***

Happy Easter All

Braelyn and Gwendolyn had a treat this weekend when they attended their cousin Lindsay's first birthday party. It seems that the Easter Bunny made a cameo appearance. The strange part is that much like Clark Kent and Superman, their father and the fuzzy white guy were never in the same room at the same time... coincidence?!?!?!

Regardless of that Spring conundrum, the Castellanos wish you all a very hippity hoppity Easter!

Poked and Prodded

On Wednesday, Gwendolyn had her initial Spinal Defects Clinic visit.

It's basically a one-stop shop of consultations with folks that will be assisting Gwen through her journey moving forward. We basically arrived and were shown to a room and then a parade of specialists and doctors began to come in and out to examine her. Once they finished, they individually spoke with us about where she is currently and what that might mean for the future.

The list of folks we met with yesterday on our initial clinic visit was exhausting. Physical Therapy, Occupational Therapy, Social Work, Rehabilitation, Spinal Defects, Urology, Neurology and on, and on, and on, it went. We were told at least that moving forward the visits will become a bit more streamlined because now there's been a baseline formed by these individuals in terms of Gwen's case.

There was a LOT to consume as you can imagine. And really, in the end, there isn't a whole lot for us to report. The long and short of it is that Gwendolyn is obviously only six months old and so she's not really using her leg muscles to their maximum potential just like any other infant. As a result, it will be some time before we really start to know what her future will hold. We were told that when she turns two we'll begin to discover her mobility range. Still, we won't know specifics about walking or anything else until probably age four or five.

And even then we were told that sometimes kids who begin walking end up in wheelchairs as their bodies mature because their upper half just becomes too heavy. The one thing we were reminded of is that while she'll never regain the muscle movement that she lost as a result of her circumstances, the focus will be on strengthening the muscles she has that are working. And again, we've got a lot of time between now and when she'll begin the process of trying to take those muscles and walk, be it with or without assistance.

Mom and Dad are going to continue to be positive and assist our beautiful girl in any way we can. Speaking of which, the P.T. suggested several new exercises for Gwen that we are going to be more diligent about incorporating into her every day routine... even though we know she won't be a big fan of it.

So all in all, it could be worse and we know that our little Gwenner is a fighter so we'll just have to be patient and let her continue down the path that God has set in place for her.

Thanks again to all those that continually offer their well-wishes to our family. You are our strength and help us continue to saunter on though all this uncertainty!

We hope you and yours enjoy a splendid Easter this weekend! (Rumor has it the girls are going to meet good ol' Peter Cottontail himself this weekend so I'm sure there will be a picture or two of that to share with you all!)