Back in Limbo

Well, let me start by saying that Gwendolyn didn’t ace her swallow test earlier today… but she didn’t flunk out either.

The long and short of it is that she did okay and that we are back to the “wait and see” approach with an open-ended release date.

During the test, Gwen had a difficult time with regular liquids. According to the tech, she frequently aspirated or had fluid go down her airway as opposed to her stomach when consuming regular liquid. However, as they thickened the liquid, Gwen’s aspiration was less and less frequent. The thickest substance they tried was at the level of honey. In that test, Gwen only had a minor aspiration.

What does that mean you ask… well, it means that the occupational therapist is going to attempt feeding Gwen at that honey consistency out of a bottle in the short term. If she feels that Gwen is doing well, then it sounds like she will avoid a permanent feeding tube for now and be released. If she’s still having issues even when a thickening agent is added, then she’ll likely have a G feeding tube inserted before she is released.

Either way, she’ll have regular swallow study follow-ups to see how she is progressing with age. She should eventually grow out of her issues by age three. (fingers crossed)

Since we’ve had some back-and-forth on whether or not Gwen’s got reflux, they are also going to do a pH test on her. It obviously will test the acidity in her throat over a 24 hour time period and is the most accurate in diagnosing the condition. A high level means she’s refluxing stomach contents which could also be negatively affecting her ability to swallow. So, if they find she does have a case of reflux (which is rather common for babies), she’ll be placed on medication for it once and for all. That would be a welcomed change from the current yo-yo method of putting her on it and then taking her right back off. Unfortunately, that has happened a couple of times now.

So the long and short of it is that Gwen’s still at the hospital and will remain there for the near future until the occupational therapist decides if the thickened formula feedings are working or not.

Obviously, things could have gone worse today… Heather and I are hopeful that whatever is decided won’t take an extended period of time and that it is the right course of action for her. Given how well she’s breathing now, we’d love to have a solution as successful as the jaw extension was for her breathing difficulties.

That’s all for now…

All Systems Go

Please keep little Gwendolyn in your thoughts today.

We just received a call from the hospital. Her swallow study has been scheduled to take place between 1-1:30 PM this afternoon.

I'll keep you all posted on the results once we know. Hopefully no issues will arise and she'll be mere days aways from coming home.

Getting Screwy

Well, I really have but one update this Saturday evening.

Gwendolyn's screws have officially finished turning. Ergo, her jaw is now extended 20 millimeters from where it was just a couple of weeks ago. We still are all systems go for Monday's swallow study. They'll take an x-ray tomorrow just to be sure the jaw's where it should be but all previous x-rays seemed normal so hopefully nothing's changed on that front.

Also, as of this point, the staph culture hasn't grown anything. The study still isn't complete just yet, but right now it's looking like she was just a little inflamed around her screws and nothing else.


I guess that's it for now.

Thanksgiving Leftovers

In the interest of full disclosure, the "before" picture above is obviously not as straight-on of a photo as the "after" one. Still, I wanted to post it to give you all an idea of just how different Gwendolyn's jaw is now. As the plastic surgeon said today, it's actually aligned perfectly now.

It honestly just hit me when I saw Gwen's profile the other day. Until recently, she wasn't able to lay on her back due to her tongue blocking her airway. Therefore, we always had to have her on her side. So, when she was laying on her back the other day and I looked into her crib, I was amazed at how far forward her jaw was.

The only other news of note is that there's a chance Gwen's got a staph infection around her screws. They took a culture sample to see if that is the case. The results should be back in 24-48 hours. Still, they said its honestly pretty common with a procedure like she's dealing with and they've got an ointment that they are applying now just in case. So, in the short term at least, there isn't a large concern that it will in any way interfere with the conclusion of the screw turning or Monday's swallow study... or, more importantly, lead to a serious complication.

Gwen was a little more congested today than she had been in the past few days but again, I don't think there's much cause for concern there either.

Other than that, poor Braelyn is stuck at home with Daddy this afternoon while Mommy and Grandma get a late jump on the Black Friday shopping scene... But I still think I got the best end of that deal if you ask me!!!

Turkey Tidbits

First and foremost, we want to wish you all a Happy Thanksgiving!!!

While Braelyn and Gwendolyn couldn't celebrate together, you can see they still enjoyed their first Turkey Day. Actually, it looks from Gwen's photo below like she had a little too much turkey because she's knocked out but as you can see above, Braelyn was pretty wide-eyed today.

In her defense, Gwen does have a good excuse to be so tired. Last night, she was transferred from the nursery "floor" to the same wing of the hospital that we were first admitted to almost a month ago. However, we're still technically under the NICU's care so we have the same nurse staff we've had since Gwen's surgery. The benefit of that is having only a pair of babies per nurse as opposed to four or five. The other plus is having a crew we're familiar with that also knows her circumstances the best. We've been told that Gwen's nearly done with her jaw extraction. The folks from plastic surgery estimate that her left side will be complete by tomorrow and her right side screws should be done by the end of the weekend. At this point, the plan is to try and do the swallow study Monday... fingers crossed that still plays out so we can hopefully begin the process of wrapping things up soon.

Unfortunately, we had to postpone our family Thanksgiving meal. One of our nieces has a bad fever and so we decided to wait until Saturday to do our official Turkey Day celebration. We figured the fever would crest by then and there's no need to have any other babies in the hospital so that way we wouldn't have to worry about Braelyn catching a bug!

Other than that, there isn't much new with the Castellanos.

I suppose I should sign off for now so we'll talk to you soon.

The No Update Update

Well, I'm sorry if you all thought I took a sabbatical from the blog. We just haven't had news to pass along of late. Honestly, we continue to just wait for Gwendolyn's jaw to finish its extraction so we can move forward with the swallow study. As the nurse practitioner said yesterday, we're really just "hanging lose" with them until then. The good news is that Gwen continues to do well as she heals up.

So honestly, I've got nothing in terms of an update. The biggest news out of CMH is that they did get space over the weekend to move Gwen back to a pod in the nursery so we're out of the transition room again.

Other than that, things at home are still busy. Braelyn's doing well. Heather's done a great job of juggling her mothering duties at home and at the hospital... and I'm still trying to figure out how we've made it to Thanksgiving Week already. It'll be sad that Gwen won't be at the table with us on Thursday but we know she'll be back home soon enough.

Well, I'll leave you with a photo of Gwen (top) and Braelyn (bottom). Barelyn's wide-eye looks continue to make me laugh out loud. I think that she needs to go as an owl next Halloween!

;)

Anyway, I hope I'll have a good update in the short term on Gwen's health. Talk to you all soon!

Liar, Liar

I don't want to go back on my promise of a Braelyn photo for the blog. Here's our little cutie pie in her purple penguin top.

A Strange Change of Scenery

Well, in terms of updates on the health of Gwendolyn or Braelyn I have none. There really isn't any change there at all... each is doing as well as they were yesterday which is a true blessing.

To prove that point, the NICU had an unexpected influx of kiddos come in today. So, they needed more bed space than expected. As a result, the healthiest kids had to be moved out of the NICU pods to make way for the new nursery kids whom are much less stable. And, as fate would have it, Gwen was one of those bumped. There was only one problem... the hospital didn't have an open spot on the regular "floor" wing (the area we were initially placed during this portion of the "Great Gwendolyn Hospital Stay Saga.").

So, Gwen and two of her more healthy nursery mates were moved into transition rooms. These are typically the rooms that families "test drive" having their kids home the night before discharge. Only one problem there... these are also rooms where parents tend to spend the evening right along side with their kids but due to the fact we found out about this transfer toward the end of the day, we weren't able to make the proper arrangements and stay with Gwen. Add to the confusion that the monitor alarms for things like respiratory and heart rate don't normally ring outside the room because a parent or two are typically there to alert a nurse when there is an issue. So, all three rooms had to get their doors propped open and a special nurse had to be placed in the hallway to ensure Gwen and the other two kids had proper supervision should an issue with their vitals arise.

So, Gwen's spending the night flying solo tonight in a transition room. The hope is that Gwen will be transferred to a more traditional hospital room like she had before her surgery shorty.

Other than our little spot of displacement, all is going great in our world. So again, hopefully we'll get Gwen in some more permanent digs shortly... and hopefully we'll get more notice so we can plan on spending more time with her once that transition takes place. The only thing I know for sure is that these transition rooms aren't suitable for "extended stays" so Gwen won't be there very long before getting her own "real" room.

Talk to you soon.

A Happy Hump Day

As you can see, Gwendolyn had a nice, restful Wednesday. The x-ray results of her chest came back pretty clean so the great lung congestion scare has been put to bed for now. We did have Ear, Nose and Throat come for another scan to ensure that there isn't something that was missed during the initial scan when she was first admitted to the hospital.

They came away from the scan sure that Gwen's current congestion is the result of some combination of acid reflux and/or a virus. Seriously, when they told me that, I had to almost laugh out loud because it was literally like stepping into a time warp to their initial diagnosis... Still, the jaw surgery has pretty much eliminated the low oxygen-blood issues she had been displaying so it isn't like that procedure hasn't worked or wasn't necessary. The E,N & T doctors were surprised that she was ever taken off her Zantac medication to treat the reflux. Ergo, they have recommended that Gwen is put back on it (or maybe even a stronger reflux medication) while we await word on the latest virus culture (which we hope to hear back on Thursday). If the virus test is clear, the reflux is likely the singular culprit of her higher than normal congestion. If there is a virus present, she'll likely be treated for that and still have some sort of reflux medication as well just to cover our bases. The E,N & T also suggested a decongestant be administered around her feedings when she seems to be particularly blocked as it will help her ability to breath through her nose when feeding.


So, maybe the reason the initial reflux medication didn't solve Gwen's issues is because is was only treating a minor problem in terms of the source of her fluid buildup. If you remember, we were told in the beginning that Gwen was likely experiencing the results of a few issues that had teamed together to cause a larger problem as a whole. Instead of the initial back-and-forth about decompression Neurosurgery, it seems like just maybe the major culprit was her jaw recession combined with the looser than typical throat tissue (which was reconfirmed in today's E,N & T scan but still not at a level that causes any major concern) and the reflux.


I'll say this, when I first saw Gwendolyn today, she had a little sparkle in her eye. I can't even really explain what I mean but it was like I could see my daughter's true essence and unadjusted personality for the first time. Between the spina biffida, then the breathing/eating issues, it was almost like she was forced to only put a shell of her true personality out there because of all she was dealing with. Today I was unfortunately only able to spend a little over an hour with her in the hospital. Yet, that hour was the most constantly playful she's been. I attribute it totally to the fact that she's finally getting better and able to relax as opposed to being focused on recovering from her spina biffida surgery or having to deal with her breathing/eating limitations.


Again, I can't really sit here and explain what exactly I mean but I know it was there and I wasn't just imagining it. I guess it was like a veil had been lifted and she just played, interacted, smiled and goofed around with me. It was seriously like a switch had been thrown. After I left the hospital, I was talking with Heather and she felt the exact same way in her time that afternoon with Gwen. To me, that's all I need to see to know that Gwen's on the road to recovery and even though we probably won't have her back home by Turkey Day, we'll have both our girls back together real soon.


Well, I guess I'll go now... Braelyn is starting to stir for her next feeding. Before I do go, I promise to get a Braelyn photo on the blog soon. I feel bad that this has become the "Great Gwendolyn Documentary" but luckily for us, Braelyn has really thrived so I rarely have word on her that requires a time-sensitive update on her well being. Still, I want to be sure that "The Peanut" isn't overshadowed by things because she's obviously just as special as her sister is in my eyes!!!


Until tomorrow...

Road Bumps Not Road Blocks

Earlier today Gwendolyn had a chest x-ray. The concern is that her congestion is spreading to her lungs. There are conflicting opinions on that issue. Some nurses listened and felt it was still just confined to her head and there was no issue... but the nurse practitioner was very concerned that is started to spread down into her lungs. If so, they'll obviously need to address the situation before it gets too serious. We still haven't heard back on the results or know exactly what the course of action will be if it has spread into her lungs but hopefully it won't regress the process at all.



We had a consult with plastics again today. It sounds as though getting home by Thanksgiving has become a pipe dream. Still, that isn't because of a problem that's popped up. Given her last jaw scan, the doctor is confident that Gwen can be extended to the duration of the device. The positive part about that is if they can extend the devise to its fullest setting, they can eliminate a followup jaw extension procedure when Gwen's in her teen years. So, if in fact we do extend Gwen's jaw to the max, it means we are really only a third of the way through the process as opposed to being at the halfway point. Luckily, according to scans there already seems to be a widening of Gwen's airway so hopefully this procedure is working like I feel it has started to.

Gwen did get a bottle feeding in the morning with the occupational therapist. She downed about 20-ccs in pretty quick time. The good news is that there didn't seem to be moments where she held her breath or spit the formula out as she tried to breathe and eat at the same time. The bad news is that she did seem to be making some of her old noises that aren't what you'd label "normal." Still, all-in-all the o.t. was pleased with her "suck level." Of course, had she watched Gwen attack her binky, she would have known that her suck has never been an issue.

;)

But seriously, they will continue to work with her on small feedings until she's fully done with her jaw extension, at which time they'll complete the swallow study. Hopefully she'll get better and better as things progress.

Well, I'll keep you posted on everything... BTW, how pretty does Gwen look with that yellow bow in her hair?!?!?!

A Great Start to the Week

Well, Gwendolyn's continuing to progress in the right direction.

Monday marked approximately the halfway mark of her jaw extension. She continues to do a great job of breathing and keeping oxygen in her blood stream. She has maintained some congestion but I honestly think she's just got a little cold. Yesterday she coughed a couple of time and I noticed that she followed that up by spit up some phlegm. So, I maintain hopeful that her current congestion is in no way linked her breathing issues from before the extension was started and that the jaw surgery is working.

As for her feeding issues, the occupation therapist said on Monday that she feels confident Gwen will start with some small feedings out of a bottle in the very near future. It will be very interesting to see how those go. Obviously, we won't know for sure how she's doing on that topic until the jaw is finished being extended and she can have a swallow study to identify for sure that she's taking it in correctly. Still, I am eager to see how she does now that we are about two weeks removed from her last bottle feeding.

Other than that, both Braelyn and Gwen had a sad Monday afternoon because Nana and Poppa left for Atlanta. I was able to start the blog with a cute photo of Poppa visiting Gwen in the hospital. They actually headed south at a good time... we had our first snow fall overnight.

Well, that's all that's fit to print today. We'll see if Gwen gets a bottle feed in and keep you posted on her progress.

The Good News Continues

Sorry that Saturday's entry is coming at almost Noon on Sunday but it's not a sign of bad things... just busy times. In fact, maybe we'll just call this a "weekend blog update" and call it a day.

Gwendolyn's had a good couple of days. She's now no longer on an IV for fluids and continues to breath marvelously without the assistance of any oxygen. She's also doing well with her tube feedings so we hope to begin trying bottle feeding in moderation next week. Gwen has even made it out of her warmer bed and into a traditional crib.

Both Gwen and Braelyn have not only been enjoying visits by Nana and Poppa, but their great aunts Arletta (above w/Gwen) and Julie (below w/Braelyn).

Let's hope the good news continues to roll in the rest of the weekend... talk to you all soon!!!

Cautious Excitement

Well, there were several things about Friday that left me with a smile on my face in retrospect.

Gwendolyn's been doing so well with her breathing that they have tried taking the oxygen off her all together. So far, she's been maintaining exceptional blood-oxygen percentage so that's a plus. Hopefully we'll see her still be oxygen-free on Saturday.

Also, she's getting her feedings increased by five milliliters each time. I believe that she was up to a full ounce at dinner on Friday. Hopefully, we can get her back up to three ounces soon, which is where she was prior to surgery. The return to normal sized feedings will only make her stronger moving forward.

Gwendolyn got a visit yesterday from the plastic surgeon that performed her procedure. He said he was very impressed with her progress in just a few days. He also said that her levels were a very positive given the fact that we're only four millimeters into the process. Again, they think that 10-12 millimeters will be all it takes to correct Gwen's jaw issues in its entirety but they put in a total of 20 in case we need to go a little farther to clear her tongue from her airway.

The occupational therapist also came to give us some cheek muscle stimulation exercises today. The goal is to make sure we help the muscles in that area adjust to the new extended jaw. At some point next week, we're also going to work on some small feedings with a bottle to reacquaint Gwen with eating via nipple. We want to be sure and prepare her for the swallow study. Hopefully that can take place in a week to 10 days. If her jaw extension can stay on schedule and Gwen is able to pass the swallow test by ensuring that none of her feeding is getting bypassed into her lungs, my personal belief is we could get discharged by Thanksgiving. That would be a true reason to be thankful!

As you can see from today's photo, Gwen was also excited to see her Nana and Poppa again... of course not as excited as Nana and Poppa were to see her.

Unfortunately (or maybe fortunately), my daughter has maintained her attitude throughout this process. On Friday, she got fed up with the IV in her foot and kicked it out. They had to start a new one in her hand. A little later, she pulled the feeding tube all the way out through her nose. I just can't wait for those teenage years to arrive!

Oh well... a little spunk is what she'll need for continued healing!!!

BTW, I'm sorry that the blog's format has been strange these last couple of entries. I don't know what the issue is... I'm sure it's something I'm doing incorrectly. The sad part is that combined with my poor spelling and grammar makes me wonder why you are all still following along. Something tells me it has EVERYTHING to do with the subjects!

;)

Have a great weekend all...

Thursday's Thoughts

First a disclaimer... the photo above was actually taken early on Wednesday. I only posted it because that picture gives you an idea as to how her screws look (you can see them above her ear, sticking out from the middle of that white dressing). However, she's really doing much better than that picture would lead you to believe.

Before I get to that, just one more thing to point out about the picture above. In addition to the screws you'll notice what looks to be like a purple line above her neck on her jaw line. That's the incision made as they inserted the plate where the screws meet the extender on the jaw. She looks pretty similar on her other side as well.

As for how Gwendolyn is doing right now... much better than you'd think by seeing that photo. The swelling has gone down considerably. I actually didn't realize how much better she looks until I saw this picture and reminded myself what she had been like first-thing Wednesday morning. She's been taken off the incubation tube now and is currently getting only a 30 percent oxygen air mix in her less invasive nose tube. That's a great sign when you think about the fact that typical room air is just something like 22 percent oxygen.

Gwen also had the temporary feeding tube placed back through her nose into her stomach. This afternoon she had a whole half-once of breast milk. The occupational therapist swung by and said that she's pushing back the swallow study until the jaw expansion is complete. When you think about it, it makes since that you'd wait to gauge her ability to eat again until the jaw is completely in place. Still, she's going to start observing her sucking and hopefully get her using a bottle in small doses next week.

Since Gwen is off the respirator (fingers crossed that she continues her progress over night and can stay off it permanently) she can now be held. So, Mom got a to rock her daughter again this afternoon.

On a negative note, Gwen hasn't slept much. Even though they say she isn't in a lot of pain, she's still pretty uncomfortable as you can imagine. In fact, at one point last night was so agitated by the screws that the nurse had to stop her from grabbing a hold of them and trying to take them out. Yeah, she got my patience too I think!

;)

Still, given what we knew to expect, Gwen is doing fabulous and can't wait for a long weekend visit with Nana and Poppa!

We'll keep you posted... talk to you later.

A Late Wednesday Update

So sorry for this tardy entry. Honestly, there hasn't been a lot of change these last 24 hours.

Gwendolyn's had her first day of screw tightening. They started at once every six hours Wednesday but now will be done once every four hours. It will extend the jaw approximately one millimeter each day.

Gewn's morphine dosage dropped from one every four after the surgery to once every two now. They are hoping she'll go completely off today so that they can begin tube feeding her. Sometimes morphine can cause nausea so they've been hesitant to implement the feedings until she's totally off it. Still, they want to manage her pain as well so there's some balancing there to be sure they do what's best.

She's done well with her recovery thus far. The hope is that she can be taken off the respirator by this weekend. They also want to set up a swallow study early next week once the breathing tube's out. If she does well on that, they will try to introduce bottle feedings again. If not, we will discuss a more permanent feeding apparatus until her body matures a little and can handle feedings without gagging herself in the process.

Well, that's about it... I hope to have a lot more information later today and will post it once I do.

Talk to you soon.

And Here's the Recap

So sorry for the delay... Needless to say, it's been a very long, very emotional day. It's like reliving the last surgery all over again only more painful (if that's possible). A lot of that has to do with the extra time we've had to solidify a bond with Gwendolyn now and the fact we only had days as opposed to months to get prepared for the actuality of surgery.

As you can see from this photo and the one below, Gwendolyn is pretty knocked out. That's probably a good thing so she isn't aware of the pain. Apparently the surgery did nothing to temper her feistiness. As you can see, they had to put socks over her hands to prevent her from messing with her breathing tube... just like they did during her last stay here when she tried to rip out her IV.

She'll just be resting for the majority of today. Tomorrow morning, they will tighten the screws for the first time. I'll try to get a better photo of them... they are kind of tough to see the photo above but if you look just past her eyes, you can see the very tip poking up from the dressing around the incision.

We really don't know a whole lot right now. She's been assigned to the same doctor and nurse practitioner as she had her previous stay in the NICU. That is nice because they are familiar with her.

They hope to begin the process of weaning her off the breathing tube in 2-3 days. Until we get her off the breathing tube for at least 24 hours and have an idea about her ability to feed again, we won't know for sure how long it will be before she can come home. If she does well, the process might actually begin this weekend but that's really putting the cart before the horse right now.

The screws will be tightened about four times a day and will increase the jaw a total of about a millimeter a day. The tightening process will take 10-15 days. The total length the jaw will be increased is debatable based on how she responds but will likely be about 10 millimeters total. The screws will then stay in 8-10 weeks to ensure the jaw has fully healed. Ergo, sometime just after the New Year she'll get them out.

Well, since I really haven't slept much these past few days, I'm going to sign off now so I can try to get some rest. I'll post an update tomorrow.

Thanks to you all for your help getting through this difficult time!

Sorry for the Delay

She's Out

Well, we haven't been able to see her but Gwendolyn's surgery is complete.

The doctor told us it went very well. He said that he's extremely confident that the jaw correction will fix her breathing issues and that there's a 50-50 chance it will fix her feeding as well. Given where we were at a week ago, I'll take those odds.

She's been placed back in the NICU, which is where she was located after her spina bifida surgery. In fact, she's right next to the station she was in previously so at least it will be somewhat familiar for us.

Once we see her, I'll post another update and snap a picture.

All Systems Go

Well, we have been given the "thumbs up" for Tuesday. Tomorrow at 7 AM, the anesthesiologist will come get Gwen and prep her for surgery. It will take approximately 90 minutes. They said it will actually take longer to insert the breathing tube than it will for the surgery itself. So, while there's some post-surgery healing on the horizon first, hopefully she'll feel a little more spry in the end than she has of late (as you can see from the picture above, she's been wiped out more often than not).

Fingers crossed that this is the fix we've been looking for. We'll have a new set of benchmarks following her operation, but Heather and I are both at ease over the fact that a solid plan is in place.

As for Braelyn, she had a normal pediatrician visit today. Believe it or not, the Peanut is now a Walnut. She's up to seven pounds somehow. By the time our hotel stay (er, make that hospital stay... sorry from the Freudian slip) is done, I hope I recognize her!

Good night all... and thanks as always for your thoughts and prayers!

Sunday Salutations

Firstly, my apologies for not including the above photo of Grandma McKee's hospital visit with Gwendolyn in yesterday's entry. Since I was at home with the Peanut at that time, I didn't even realize Heather snapped it until after yesterday's blog posted. Still, she sure deserves top billing for an entry or two... if not for her help watching Braelyn so Heather and I can both be at the hospital at the same time certain days, I don't know what we'd do! Besides, posting her photo a day late at least saves you all from having consecutive entries without a photo to accompany it.

As for today's activities, we got some preliminary good news. They took a set of blood and urine tests this afternoon just to be sure that the new medication was working correctly. If not, they would try some different treatment overnight in hopes of still being able to salvage the availability of Tuesday's surgery. Gwen's results from today's tests came back very positive. Her CO2 levels were smack dab in the normal range and the Ph balance of her urine showed a decrease in acidity (meaning she had less CO2 that her kidneys were trying to eliminate from the blood stream).

They'll take another set tomorrow at Noon. If the progress continues, then Tuesday morning Gwen will be in line to have her jaw surgery nice and early in the morning.

Other than that, the next-best news today is that we again have no new drama to report... it's kind of nice to have back-to-back days like that.

Hopefully that trend will continue on Monday!!!

No News is Good News

Well, I'm happy to report that today was one of the rare stress-free days we've had these last couple of weeks. Awaiting the results of those tests Monday is nerve wracking but Gwendolyn had a very good day. In fact, she spent most of it with her mother and Grandma McKee.

Braelyn drew the "short straw" and had to hang out with daddy most of the day. Luckily for him, Braelyn waited until mommy left for the hospital to set a new Guinness Record for the "largest soiled diaper by an infant."

What an indoctrination that was. I'm typically on Gwendolyn diaper duty so I've seen some impressive showings before by her but not like her big sister's was today. For the record, I'm the type of father that kind of embraces tasks like changing diapers or giving a feeding and baths... but that was unlike anything I had seen before!!!

;)

Hope you all have a great night and fantastic Sunday... talk to you then.

Finally, a REAL Plan's in Place

Well, lately things here have really resembled a Duncan yo-yo. Heck, in the last 24 hours we went from maybe being discharged today, to prehaps getting transferred to the ICU because of some concerning overnight blood draws, back to probably being discharged today, and finally we were given a new plan… one that I touched on yesterday. If all goes well this weekend following a new medication Gwen’s been placed on, then she’ll have jaw surgery first-thing Tuesday morning.

Aside from the picture above being adorable, it really does demonstrate Gwendolyn’s lower jaw recession. If you look, you can tell how the middle of her bottom lip is almost indented as it darts inward to meet her lower jaw. The hope is that an elongated jaw will increase Gwen’s airflow and make her feedings more of an ease. The screws are in a little different placement than I initially thought (they are between the back of her temples and her ears, kind of like little antennas) but the concept of what I mentioned yesterday is the same.

Unfortunately, last night Gwen had a relapse of high CO2 levels in her blood. She’s been put on a medication that should help level them off in the short-term. On Monday, they will retest her blood. If the levels haven’t gone down as much as they need to, the surgery will unfortunately be postponed and she’ll have to be put on a special machine that should ensure her lungs are getting the proper mixture. Only once that happens and the anesthesiologist feels comfortable preparing her for the surgery will she be allowed to have it… meaning a possible delay of a week or more.

As for the sleep study, it’s still going to happen but the plastic surgeon is no longer concerned about any ramifications altering his decision to operate. Still, they would like to see the results.

So, fingers crossed that the weekend goes well and that come Monday all tests are clear.

A Sight for Sore Eyes

Well, when I returned from work to the hospital this afternoon I was greeted by the vision captured above. Needless to say, it was indeed a sight for sore eyes to see Heather up and about holding Gwendolyn once again.

Now that mom and I have officially healed up, we can get back to blog updates only about Gwendolyn’s health!!!

Yesterday, plastics ordered a CT scan to look at her jaw placement. The results are leading the surgeon to believe that it is that recessed lower jaw that’s the likely culprit for Gwen’s issues. She’s still going to have a sleep study later this month. The plastic surgeon said assuming nothing unexpected shows up then, Gwen will be going in for surgery to extend her jaw the week following the sleep study. Honestly, I can’t give you a lot of details about that procedure yet… and unlike earlier this week, I think I should wait until I have the correct facts before I try. We’re supposed to review all this procedure entails tomorrow with plastics. From what I was initially told though, it will be a long painful process. The jaw will have screws inserted in each side behind her ears. Periodically, the screws will be tightened to eventually extend the jaw to a more ideal location in relation to her upper jaw. The ultimate goal is to jet the jaw out from its current location, thereby keeping the tongue from inadvertently blocking the airway while asleep or gagging her during feeding.

In a sad admission, I am one of the schleps that purchased a “Pure Sleep” snore guard (actually, more than one since the dog chewed the first one up and the wife threatened me with divorce if I didn’t get a replacement… but I digress). I think pretty much all of America has seen the infomercial on that device and how it extends your lower jaw to open your airway while you sleep. The premise between that and Gwen’s surgery are actually based on the same theory. (BTW, is it only I that finds it a tiny bit humorous that my daughter will be a veteran of two plastic surgeries before her two-month anniversary of life? Housewives everywhere are oozing with jealousy!)

;)

We are also awaiting the conclusion of the two-day apnea machine study. The conclusion of that might cause Gwen to be placed on an additional mediation to hopefully assist her airway breathing.

We are hoping that one or both of these solutions eliminate Gwen’s issues. Unfortunately, we are starting to run thin on “physical” ailments that can be the cause of her problem. Once they have been exhausted, the only logical place left to look is in the brain. With the Neurosurgeon so sure that the Chiari Malformation is not the cause, I can’t say that we would ever either know for sure or be able to correct this breathing/eating issue if it weren’t indeed physical in nature. So, assuming that Gwen’s jaw surgery remains set on Thanksgiving Week as it currently is, her mother and I will be rather “thankful” if that’s the surgical answer to our prayers.

I do think we’re getting close to a discharge in the short term. Heather and I are getting background information on inserting and administering a feeding via her tube tomorrow. Not a fun task but necessary to be sure. And the fact that we’re beginning that process leaves me hopeful we’ll be out of here in days.

Have a good evening… I swear I try to keep these things short but they always seem to get away from me. Sorry about that!

Upon Further Review

Just spoke with mom and apparently the difference between my side salad and her full-sized portion is an extra day of food poising fallout. Her big “meal” today was a slice of toast and apparently even eating that was a struggle.

Poor thing! Hopefully some extra rest tonight will get her back on track for tomorrow.

Finally, Some Positive Movement

Well, we finally have a true update in Gwendolyn’s latest saga.

Firstly, with the neurosurgeon so adamant that additional brain surgery is unnecessary, I’ve been told that is no longer a real option. Besides, if the neurosurgeon won’t perform the procedure, then is it really brain surgery?!?!?

Of course my next question was to figure out where we go from here. Well, the pulmonologist called in the plastic surgeon for a consult. The latest theory is that her jaw sits farther back than is typically the case. As a result, her tongue is partially closing off her airway when she sleeps as well as partially gagging her when she feeds.

We had an MRI today to get a sense for exactly how far back her jaw is sitting structurally. We’ve also got a sleep study scheduled for later this month to see how it’s working functionally. The combination of the results from each of those will help the plastic surgeon decide if she’ll need corrective jaw surgery.

Additionally, she’s been put on an apnea monitor. That term is a little misleading because it not only measures the breaths she takes (or neglects to take) but her heart rate as well. The pulmonologist wanted to observe her for a couple of days with this monitor. Assuming no serious red flags arise (i.e. the return of regular apnea spells or an increasingly high heart rate) we’ll be discharged in days and await word following our sleep study. It sounds like we’ll be sent home with the apnea monitor as a precaution. She’ll also remain on the feeding tube for the short term as well. The thought there is that if she does require corrective jaw surgery, they know she’d have to have the feeding tube in during her recovery anyway and moving her on and off then back on and off again could be stressful for her.

So, the good news is that after a couple of days with nothing happening at all, the ball has gotten rolling once again.

In other news Heather is doing better but still feels quite rundown from her illness. I’m doing much better on my end. Braelyn is still trying to figure out if she’s an only child after all or if that other girl she shared a womb with for 38 weeks will be coming back for another two-week visit sometime soon.

;)

So that’s your Castellano update for Wednesday. Oh, the picture at the top of this entry is another one from our newborn photo session. Fingers crossed that all goes well and that we get discharged this weekend!

When it Rains, it Pours

Unfortunately, tonight’s blog doesn’t have much of a Gwendolyn update. She remains in limbo as the tests continue. The Neurologist continues his assessment that she doesn’t need follow-up brain surgery as her symptoms aren’t getting worse and the Pulmonologist continues to contend that it’s the only logical answer.

So, Gwen sits in her bed waiting to be told what her future holds as she continues a myriad of tests.

As a disclaimer to last night’s post, the following comments were posted on the blog in response to that entry: “Chiari is not a tethered spine. Chiari is where your brain has no room.” The other comment read: “Please go to www.asap.org and read what Chiari is. TS is entirely different.”

I apologize for disseminating incorrect information, I was just going off how the hospital pediatrician was explaining it to me and doing my best to forward on the correct information to you all. Something tells me if it was the Neurologist that was describing it, I would have been a little more spot on. Obviously, I misspoke and I appreciate you all keeping me honest!!!

Regardless, there's a reason that I entitled tonight's blog “When it Rains, it Pours.” Apparently, both Heather and I contracted food poisoning. It has hit both of us with vengeance today. Because of my situation, I had to stay away from the hospital until I got a little more “regular” shall we say. In all my time of illnesses, which luckily isn’t extensive, I can honestly say I’ve NEVER been this rundown before. I mean, I’m spent right now. Still, Gwen doesn’t have the luxury of saying that both of her parents feel poor so tonight she’ll give us a break and feel better… so I’m back at the hospital again. At least my food poisoning has crested and is getting better.

About midway through the afternoon, Heather felt some similar effects herself. Our only theory is that we each purchased salads from the hospital cafeteria. That’s really the only like items we’ve had over the past 24 hours so it’s got to be the culprit. Let this be a warning, see what happens when you try to eat healthy. Then again, it has been a boon for reducing my caloric intake today!

Anyway, Heather is feeling the effects worse than I right now. Seems that she barely made it home tonight and can’t even keep water down. At least all of my “issues” took place south of the border. As you can tell, Heather has gotten nausea as well. So, Grandma McKee has Braelyn for a sleepover tonight.

With that, above is the first of the photos we got from the girls newborn photo session (trust me, more will follow shortly as I brag about my girls). Needless to say, we are VERY glad we scheduled them when we did or their “newborn” photos might have ended up being three-month photos at this stage. As you can tell, we lucked out in the fact the girls don’t resemble daddy at all! Now THAT would have been an unfair cross to bear.

;)

Nighty, night and sorry again that I misspoke yesterday!

So much is still up in the air this Monday night

My update on things here is really in a sense still no update. On a good note, the supposed virus seems to have crested and in that aspect, Gwendolyn’s getting better.

On the other hand, now that those symptoms are subsiding a little, it has brought back to light the issues Gwendolyn was having initially that facilitated Heather setting up our appointment with the occupational therapist last week. Namely, Gwen still has regular problems with her respiratory system, especially breathing while she is feeding. Right now, the plan seems to be that we continue with her stay here until those issues get resolved. While the virus exasperated the problem initially, even when she’s virus free the doctors feel that she just isn't getting the correct amount of oxygen mix in her blood due to those breathing issues… especially when she feeds.

Right now, there seems to be a difference of opinion between the Neurologist and the Pulmonologist as to the next course of action.

Before I dive into that, I think I need to explain the item that’s currently causing the discussion. When Gwendolyn went for her MRI earlier this week, it confirmed the presence of a Chiari Malformation. Honestly, it wasn’t much of a revelation because the majority of kids with spina bifida have it to various degrees. The part that’s difficult to gauge is exactly how much effect it has on each child. Some exhibit little or no outward effects and in severe cases, some can’t even breath regularly on their own.

In the simplest of terms, a Chiari Malformation is basically a tethered spinal cord. See, your spinal cord is supposed to be free-flowing in spinal fluid. When your spinal cord is tethered due to the spina bifida, it becomes adhered to the spine itself. This causes the spinal cord to pull down on the bottom part of the brain, called the cerebellum. Then the cerebellum kind of descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine. The cerebellum is the portion of the brain that controls your sensory and motor control, such as eating and breathing patterns, so it’s very relevant in this discussion.

Now, back to our regularly scheduled blog… The Neurologist feels that the risk of doing a surgery on the cerebellum to free it from the spinal cord far outweighs the possible reward that might be gained by it. Essentially, he feels that another brain surgery might not even relieve her symptoms while at the same time opening the risk for possible post-operation infection. He basically thinks that it is too much risk for a solution that might not present itself.

On the other side of the spectrum, the Pulmonologist feels that Chiari Malformation is undoubtedly the cause of all her issues. Her thought is that it is the only logical explanation left to explain things. She thinks that Gwen needs to have the surgery and do so soon or she could run into even more serious breathing issues eventually.

Because of the difference of opinion, the Pulmonologist is going to begin running a series of tests starting tomorrow and leading through the majority of this week. They hope to better gauge exactly where she's at in terms of her breathing and eating. After a few days of gathering that information, they'll confer to review the results and try to make a decision on whether or not they should continue with the surgery to correct her Chiari defect or not. Again, there’s a chance they do the surgery and it honestly isn’t the cause for her issues, which opens a whole new series of concerns in terms of figuring out exactly what the problem really is.

In the mean time, the occupational therapist came and observed Gwen’s last feeding. For those of you that followed my blog when we were admitted back into the hospital, this is the initial meeting we had scheduled on Thursday that went terribly wrong and was cut short. Anyway, this time we were able to finish the feeding observation. After some research and a consult with other doctors, the O.T.’s recommendation was that Gwen needs to be put on a feeding tube. She said that she needs some feeding intervention or she risks harm should the breast milk seep into her lungs accidentally during a feeding. By staring on a course of feeding treatment now, it wouldn’t do anything but confuse Gwen. She doesn’t want to start something only to alter it based on what type of solution is decided on between the Neurologist and the Pulmonologist at the end of the week.

So, I sit here in a hospital room watching my daughter receive her first meal via feeding tube praying that it doesn’t become a long-term solution. At the very least, the tube is a tremendous plus for her in the here-and-now. The struggle Gwen had eating before wasn’t healthy. Now at least it isn’t such a task for her to get nourishment.

In any case, our family is still trucking along. Braelyn is still doing well hanging with grandma and has a pediatrician mid-week to check her growth. Of course, she’s no longer in preemie clothes and is instead solidly in newborn cloths (as you can see from the picture above) so I don’t have any fears there. Heather and I are doing well under the circumstances. I’ve become a little too familiar with this room but luckily I have the ability to sleep about anywhere so that’s a plus. Needless to say, it’s stressful for all the Castellanos but we’ve had our share of that this last month and come through just fine so we’ll be okay after this road block.

Well, sorry again for such a lengthy blog entry. Unfortunately, I’ve had a lot of medical jargon to explain these last couple of days… hopefully they’ll be shorter in the future because I’ll have less to share.

Sill No Confirmed Diagnosis

Well, today provided us with a slight scare but in the end, I have about as much information on Gwendolyn's malady as I did yesterday.

At one stage, the CO2 level in Gwen's blood was off the charts. In fact, even though she looked quite normal and coherent, the pediatrician told me that if Heather or I had the same percentage of carbon dioxide in our bloodstream, we’d be unresponsive and in need of a respirator to survive. Luckily, a follow up blood draw came back with lower stats or Gwen would have been quickly whisked away back to the ICU to be put on a CPAP. That is a scuba-mask style apparatus that literally forces air into your lungs and back out. For those snorers out there (not that the author of this piece knows anything at all about snoring... yeah, right!), that’s the machine that you’d get hooked up to as a way of ensuring that you didn’t have apnea during sleep. Anyway, we dodged a bullet there. Hopefully her levels continue to decrease so we don’t have to add that into the fold of ailments.

As for the cause of her hospital stay, that’s still up in the air. The first culture test came back negative and we haven’t heard back on the second culture run. The conventional wisdom still is that she’s got three small ailments (a common throat abnormality in infants, reflux and a TBD respiratory virus) that have combined together along with the possibility that she's temporary got lower neurological development - as result of her hydrocephalus - to cause the breathing issues. But honestly, that’s just the most likely scenario and has yet to be confirmed in any shape or form. I'll honestly feel better about the whole thing when we reach the stage that we do know what's going on for sure.

To her credit, Gwendolyn’s been a trooper. She had to survive a ton of pokes, prods and doctor consultations today. Still, she’s no worse for the wear save for the lack of an actually proven diagnosis. Right now, she’s enjoying a clean diaper, full belly, binky and tight swaddle… not to mention a curious green illuminated frog on the mobile the nurse installed in her crib today. Gwen keeps staring at that frog like it's the most interesting thing in the world... and to her it probably is I guess.

Well, hopefully we have a night free of breathing stoppages or any other drama! Once we have had a 24-hour time window without those, the respiratory issues or the need for oxygen, we'll be able to blow this popsicle stand!

Good night…