Pinching Ourselves

Strange but we awoke this morning almost expecting that Gwendolyn’s homecoming was a farce. We guess that’s what happens after two months of back-and-forth in the hospital.

Regardless, the girls did rather well last night. While we obviously wish Gwen didn’t require a feeding tube right now, there’s something to be said for setting her feed to run all night long and only needing to wake up once to quickly turn her pins in the middle of the night. No worries though, Braelyn was sure to awake twice overnight for a feeding just to make sure no sleep was had by Mom or Dad.

;)

Still, we wouldn’t have it any other way!

Gwen’s healthcare dance card is rather full in the short term. Tomorrow is a follow up with our pediatrician… Friday’s an x-ray to check on the process of her jaw extraction… Next Wednesday is another x-ray followed by a consult with the plastic surgeon on Gwen’s jaw… The week after that, the occupational therapist will review how her new jaw (which should be fully extracted by that point) is functioning... By the beginning of February, Gwen should be shedding her current feeding tube for a much easier to use and care for Mickey Button… Shortly thereafter, we expect Gwen will have her jaw extraction device removed.

So, the long and short of it is that a lot will transpire before we even get back to the follow up on the myelomeningocele repair from her spina bifida. In fact, those initial follow up appointments had to be pushed back until the middle of March so we could focus on successfully completing her jaw procedure.

Regardless of that laundry list of medical appointments, the fact that “Gwenner” and “Brae Bear” are sharing the same nursery again leaves an indelible grin plastered on our faces.

Since we’ve finally got Gwen back home, we likely won’t be posting daily updates on the blog. Right now we just want to focus on making up for lost time with our family.

But don’t fear! You can expect that we’ll give regular blog updates on the girls as we have news to share… So many of you have voiced a desire to follow along as our girls grow. Obviously, we wouldn’t have it any other way. After all, you seem to have forged as much of a bond with the girls as we have and you are all so very important to us.

With that said, I’m sure we’ll be blogging again very soon…

Speechless

Well, we decided to let the following picture do most of the talking for us in this blog entry.

Incredibly, Gwendolyn's recovery accelerated so much that they decided to discharge her today. We'll have several appointments and followups these next few weeks but instead of boring you with those details today, we are simply going to bask in the amazing fact that our family is once again complete!

Tomorrow would have been the two-month anniversary of Gwen getting admitted to the hospital this go around. Luckily, we'll be marking that date (which also happens to be the girls' three-month milestone) at home. We honestly couldn't believe it when the doctor told us that if the plastic surgeon was okay with it, he thought she was ready to come home with us.

While this surprising reunion was most welcomed, it wouldn't have been possible if not for the support we've been offered by all of you. While our sincerest thanks is all we can offer in return, know that we appreciate all of you for everything that you did to get us through this difficult time.

Dreams do come true we guess!!!

A Brief Weekend Recap

As the weekend comes to a close, we continue to have promising reports on Gwendolyn's healing progress. As you can see, she's no longer on humidified room air (or any air whatsoever) and rarely (if ever) has a desaturation. In fact, she's looking as good now as she did before the breathing issues suddenly crept back up a few weeks ago... which only fuels our speculation that the malfunction of the jaw extender was the culprit all along. Aside from the fact that she ripped out the I.V. first from her hand, then kicked it off her foot before it was relocated once again to her head, this recovery process has been a breeze. Even the I.V. has become a side note as they removed it for good earlier today much to Gwen's delight.

We've been told to expect on Monday that the plastic surgeon will review the x-ray taken earlier this weekend after her surgery. Once he does, a plan for her screw tightening on this new jaw distraction will be set... Remember, there's about a seven millimeter difference between the side where the initial device broke and the other side that needs to be evened out. Thus far, each side has been extended in even amounts. There's also been rumors that we'll go home shortly but we're going to remain cautious given our recent history on that topic, as we are sure you all can imagine.

While our hospital drama with Gwen has continued, a great byproduct has been that Braelyn's really got some good one-on-one time with Grandma McKee. She has also enjoyed her recent holiday visit with Nana and Poppa. They'll return to Atlanta on Tuesday before they prepare for a move back to the Sunshine State.

Well, fingers crossed that all continues to progress well with Gwen and that she will soon be reunited with Braelyn. We'll keep you all posted!

Some Christmas Memories

This Christmas, we have so much to be thankful for. Since we really don't have much to update, we wanted to share just some of our holiday memories... with more to come of course!

Hope you all had as blessed of a Christmas as we did!!!

Braelyn McKee meets the "Jolly Old Guy" for the first time.

Mom, Dad and Gwendolyn Marie

Mom and Dad check out the beautiful Holiday bow that Grandma McKee made for Braelyn.

Gwen tells Mom some good last-minute Christmas gift ideas for her and Braelyn.

Braelyn gets into the Holiday spirit.

Poppa reads Gwen "A Christmas Carol"

Braelyn acts like a snuggle bug with Nana.

Trucking Right Along

Great news this snowy Christmas Eve... Gwendolyn has been successfully extubated.

While she's back on humidified room air for now, they will try taking her off that in the next few days to see if her congestion has cleared.

As you can see, she's back to her normal adorable self and much less swollen than she was yesterday.

=)

Until tomorrow.

Christmas Eve Progress

Well, our update today is brief but encouraging.

The transfusion seems to have worked its magic and Gwendolyn's hemoglobin levels immediately shot back up to where they should be.

The plastic surgeon also looked over her and was very please with how much the swelling in her cheeks and jaw has decreased and how the incision sites look.

Gwen's now finishing up another series of steroids to reduce the swelling in her throat caused by her intubation. They are preparing to have her breathing tube removed later today. Hopefully all will go well with that and it will be another step on our journey home.

Thanks again for all those comments yesterday... they really helped us get over the hump! Hopefully the best progress for little Gwendolyn Marie is yet to come!!!

Finally, we hope you and your family have a tremendous holiday... blessing to everyone!

A New Hurdel for Little Gwendolyn

Well, Gwendolyn completed her latest surgery last night... that's her fourth one before she turns three-months old for those of you counting.

They successfully removed the old jaw extension devices and installed new ones that have a maximum increase of 15 millimeters (as opposed to the 20-millimeter device that was initially installed last month). The thought is two-fold... First, she's already been distracted (20 millimeters on one side and 13 on the side where the bracket shattered) so they shouldn't need as much length as the last time. Also, a 15-millimeter device obviously has less tension in it when it is extended to its maximum length. Ergo, if the device failed the first time because there was just too much torque on the device for Gwen's jaw size, this will hopefully eliminate that.

They will begin by extending the jaw on each side at equal levels but will eventually ensure that it is aligned at an equal length before the extension has reached its climax.

Gwen is still on a breathing tube. The doctor wanted to keep her on it for a couple of days since she has so much swelling around her cheeks and jaw. They obviously want to be sure her mouth is clear enough to be able to take normal breathes. Still, they are optimistic that she'll be fine when they try to take the tube out in a couple of days based on her current levels.

Unfortunately, Gwen lost more blood than initially expected. We just received a call that her hemoglobin levels are very low and so she's going to require a transfusion. We've been close to needing one in the past but we were always were lucky enough to dodge that bullet. It looks like our luck on that front has finally run out. While they screen the blood in advance, we obviously wish we didn't need to have Gwen undergo yet another process. Still, this should ultimately assist with her healing.

So, we ask for your continued prayers that Gwen heals up and that the transfusion process (which will last about three hours today) goes well.

Thanks again so much for your well-wishes… we need them now more than ever!

A Note to My Sister

Scrooged!!!

Well, we have some unfortunate news. On Friday it was discovered that one of the devices in Gwendolyn's jaw has come apart. How and when it happened is unknown.

My strong feeling is that it is related to her breathing issues... that when they inserted the breathing tube during her last procedure, they opened her mouth too far and rendered the device useless. Of course, no matter how much we believe that, it can't be proven. Again, it just seems too coincidental to not be the case. The other point of contention is that this exact possibility was brought up by me when these breathing issues came to the surface last weekend but I was quickly dismissed because I was told it was an impossibility her jaw was opened that far when the breathing tube was inserted. Well something happened!!! In fact the plastics doctor told Heather on Friday that he's never seen this happen to an infant before. The only time he's seen it is either when children have fallen and hit their chin or have been eating something hard that popped it out of place. Needless to say, neither is the culprit in this circumstance.

Regardless of how and when it happened, the unfortunate truth is that it has and we need to deal with the ramifications of it. Currently, the left side of Gwen's jaw is seven millimeters more recessed than the right side. And so, on Tuesday afternoon Gwen will once again undergo surgery to implant the extension devices on both sides of her jaw. In addition to evening out her jaw, both sides will actually be extended out farther than before. The plastics doctor said that while the previous device greatly improved her jaw's placement, it actually could have come out farther to reach the optimal location. So, they'll extend it out to a more prime position for her situation. In the end, it could even help solve her eating issues but we'll just settle for getting her back to the point where's she's breathing normally without the assistance of humidified room air.

As you probably surmised by now, that means there's no chance that Gwenner will be home for Christmas. On the bright side, we've been told we won't have to wait until the extraction is fully complete like before. The plastics doctor felt that since we just went through this whole thing a couple of weeks ago, we'll be more than amply prepared to deal with turning her screws at home.

So, rumor has it that after she's off the breathing tube and out of a danger zone, we'll be taking her home. Of course, that will be well past two months since we were admitted and we've been told many, many times before that we were close to going home so call us cynical if we hold off on the champagne toasts until Gwen is indeed at home.

As you can see from the top of this entry, at least Gwen got a visit from Santa in the hospital. We'll have to be sure that Braelyn gets to visit the jolly guy herself.

That's all for now. I anticipate we won't have much else to report until after the new jaw devices are installed on Tuesday, which ironically is the day that Nana and Poppa arrive for a Christmas visit.

And so it goes...

Our Friday Frets

Well, we still don’t have a lot to update you on.

Gwendolyn was moved to back to the NICU Nursery yesterday. This was done more because they are able to give her specialized attention. Additionally, by moving her back to the nursery they are able to put her on a humidified mix of room air. They are now hoping that her issues break down to the breathing tube used during her last procedure irritating her throat and the dry air this time of year not really allowing it to heal in a timely manner. Obviously, the humidified air would accelerate the healing process if that’s the problem.

We’ll have to see if it helps. For what it’s worth, Gwen did sound a little better yesterday.

Her discharge target date is still really up in the air so unfortunately we don’t have anything solid on that front to share yet.

That’s all for now.

An Update on “Mini-Me”

Well, before we dive into an update on Gwendolyn, we wanted to share the photo comparison below. Honestly, it’s pretty frightening just how similar Dad and Gwen look!

As for an update on her situation, there isn’t much. She had a better night than the previous one but still had some desaturations. They are going to flush her nasal passage with a saline-type solution called “Ocean Breeze” (Yep, couldn’t make that up if we wanted to). The hope is that this clears out her nose and maybe opens up her breathing again. We wish we could share something that’s a little more high-tech but at this stage the doctors are still a little stumped on things.

So we suppose that the long and short of it is that there hasn’t been a whole lot new to report but hopefully we’ll get something more concrete soon!

Redefying Frustration

We write this blog entry with a sense of exasperation.

Unfortunately, Gwendolyn had a relapse again over night of her breathing difficulties. This time, the nurse on duty said that Gwen didn’t start bringing back up her oxygen levels again until she was stimulated by touch. In fact, while visiting the hospital this afternoon, Gwen had several more instances in front of Mom.

Currently, the hospital isn’t sure where we go from here and neither do we. We’ve tried to remain optimistic that we’d be home soon without getting our hopes up too high. Unfortunately, we are now in a no-man’s land of sorts. The hospital is reevaluating the situation to try and determine what exactly is causing these breathing issues and why they popped up again only after her feeding tube was inserted. The only logical conclusion outside of the viruses or infections that have already been ruled out is that her throat is still inflamed from the breathing tube she had inserted during that feeding tube procedure. However, Ear, Nose & Throat was not comfortable doing another scope on her because they have already done two. But they may do a bronchial test on her depending on what happens over the next few days.

Unfortunately, until we know what has caused Gwen to regress, we won’t know what the fix is or how long the recovery for that is. Ergo, getting our Gwenner home by Christmas is now far from a given and maybe be a 50-50 proposition at best.

On the bright side, Gwen spent the majority of the day smiling wide at the parade of medical staffers as they shuffled in and out of her room. At least she’s remained her sweet self throughout the process.

Well we honestly don’t want to sit here and start a pity party so for now we’ll sign off.

Obviously as we get updates, we’ll be sure to share them.

Thanks again for your thoughts and prayers... we need them now more than ever!!!

A Drama-Filled Weekend

Well, we had a little drama this weekend.

On Sunday Chuck got a call from the hospital. They were concerned that Gwendolyn had several reoccurrences of apnea the night before and that she had begun to sound really congested. (Of course, from the moment that Gwendolyn was born she’s always sounded raspy, but I digress…)

Even though these occurrences happened overnight from Saturday into Sunday, they still didn’t call to tell us until 11 AM. (which in and of itself made us wonder why it took them hours to inform us.) As a side note, the Chiefs were hosting a “Toys for Tots” drive at the stadium yesterday and Chuck was helping to organize it for work. Kickoff for the game was at Noon. So, if you are able to put two and two together, here he is frantically trying to exit the stadium complex an hour before kickoff… or right as the majority of the crowd is trying to get in. Let’s just say it was a sight to behold!

Once Dad eventually made it to the hospital, he was told that the initial concern was that Gwen had either an infection around her screws, RSV (which stands for Respiratory Syncytial Virus and can be deadly to infants in some cases but to you and I is really kind of like the common flu), or some continued reflux issues. All of those have since been discounted based on test results. We are still awaiting word on some other tests on the off chance it a respiratory virus, but they don’t feel like that’s what it is.

What the consensus seems to be now is that it might have just been a case of Gwen’s leads (the sticky connectors on her chest that measure her heart and breathing rates) being a little loose. They think that when she moved, they came off a little and give false readings (or in this case, the lack of a reading). So, while we hope that’s the case, we’re also a little exasperated that they didn’t think about that actuality until now.

On the bright side, while Dad and Gwen hung out in the hospital on Sunday, Braelyn and Mom trimmed the tree and got the place ready for Santa’s arrival. As you can see, Braelyn was all about sitting back in her chair and examining her handy work when it was all said and done!

;)

Further proving she's no longer "Daddy's Little Peanut," Braelyn topped the scales at a whopping 8 pounds 14 ounces during her pediatrician checkup today. She wasn't a big fan of those 2-month shots but after a little while, she finally calmed down. Luckily, everything else on her continues to progress marvelously!!!

Okay, that’s about all the update that’s fit to print for now. We’ll talk to you all soon!!!

Inching Closer

Well, the only note of consequence today is that Gwendolyn has once again graduated from the NICU Nursery and is back on the “floor.” Her feedings have also increased to the 80 milliliters every three hours level, which is where she was before her latest procedure. Both are signs that we hope point to us being “out of the woods” in her latest recovery.

So, we really feel like we’re mere days away from getting her home. Assuming she continues to progress marvelously, it should be anywhere between 3-5 days until we get her home. Honestly, the main thing that needs to be taken care of now is to have us get a weekend tutorial on how to administer the feeds via her new tube ourselves. That way, we’re ready to go once she’s discharged.

Needless to say, we are cautiously optimistic!

For those of you keeping count, today Braelyn and Gwendolyn are 73 days old. Of that time, Gwen’s been in the hospital for all or part of 57 days, 44 of those since she was readmitted to the hospital in late October. Now it might have taken me a few times to actually pass College Algebra but by my count that translates to Gwendolyn Marie only experiencing 16 full days of her young life not confined to a hospital crib (or just under 22% of her life thus far).

A sad situation that we are very much looking forward to rectifying!!!

I don’t think we’ll have anything new to report until Monday. That’s the day that Braelyn’s pediatrician appointment has been rescheduled for. Again, for those of you keeping track, she’s had to have her two-month shots pushed back three times because of a test or procedure her sister gotten scheduled for at the same time. Heck, at this point she’ll be closer to three months of age when she actually gets her inoculations. By the time Monday rolls around, we also anticipate having a better timeframe on Gwen’s exact day of discharge.

So I guess we’ll talk to you on Monday unless something newsworthy pops up before then.

Totally “Tube”ular

Well today’s update about Gwendolyn from Heather and I has the common theme of “tubes.”

Namely, Gwen was taken off her breathing tube yesterday. Everything progressed perfectly. She immediately started taking constant breaths on her own and was able to keep her oxygen levels up where they should be. While Heather said she was a little gravely right afterwards, Gwen sounded pretty good considering.

The other tube update transpired yesterday as well. In the evening, they finally authorized Gwen to begin getting breast milk through her newly placed feeding tube... So far, so good!

The nurse said that Gwen’s getting about 25 milliliters every three hours. Still, since she did so well overnight they expect the volume will be increased shortly.

Thank goodness… remember, before last night poor Gwen hadn’t eaten any food since 2:00 AM Tuesday morning. Unfortunately, as you can see from her photo above, Gwen's I.V. got moved to her head because the original one in her hand wasn't working properly. Hopefully, Gwen's feeds will continue on their present course and the I.V. can be removed shortly anyway!!!

Braelyn’s doing well also. As you can see below, she can still pull out the owl eyes from time to time.

I guess that’s all for now. We’ll talk to you all soon!

The Sights My Eyes Have Seen

Firstly, here is a photo of my little Brae Bear from this morning. Let me say something about her… I have NEVER been around a child that enjoys being on it's changing table more than her. She can be mid-temper tantrum but goes silent and smiley as soon as her head hits that changing table. After you’re done with the changing and pick her up, it’s like some took the DVR off pause because she’ll literally pick right back up where she left off crying. Luckily for us, Braelyn doesn’t cry all that much unless she’s dealing with a gas attack but I just find that whole mood-swing process amusing!

As for her sister, Gwendolyn is progressing well. Apparently when they inserted her breathing tube prior to yesterday’s operation, it required several attempts to get it placed right. So, she’s got some irritation in her throat. The doctor has decided that he’s going to give her a three-dose round of steroids today in hopes of alleviating the swelling. Assuming that works, she’ll have the tube removed tomorrow morning. The following morning (Thursday) she’ll get the first feeding with her new tube. They couldn’t put in a tradition “Mickey Button” because she’s still too small but we’ve been told they can insert that via clinic visit (so it isn’t a serious medical procedure) in about 2-3 months. Until then, it’ll be more like a small tube coming out of her stomach than a capped button… but we aren’t too far away from the lower maintenance that comes along with a “Mickey Button.”

The doctor told us the hope is that by the weekend, Gwen will be in less critical condition and can again be transferred out of the NICU back onto the “floor.” And, if all progresses like we hope, then by the middle of next week we’ll be taking her home.

The pediatrician, in his thick Jamaican accent, told Heather and I this morning to get her stocking ready to be nailed into the mantel because we should have her home by Christmas (actually, he said to “get her red sock out” but I don’t want to get lost in the details… besides, I have no idea how the Jamaicans celebrate the Holidays)!

;)

So, she’s still on the ventilator but on its lowest setting of oxygen and pressure so it’s just like what she’d normally be breathing if she was on her own.

The most pathetic thing now is that we have to again sit idly by watching her try to cry only to not be able to make any noise due to the tube in her throat. Honestly, I’ve seen many sad things in my time but that is truly the most wrenching I’ve had to digest.

The tube in her throat is also causing some binky sucking issues because she obviously has a little difficulty fitting the entire pacifier in her mouth along with the tube. So when she gets upset, we just hold the binky loosely to her lips and she mouths her sucks on the tip of it.

Needless to say, that’s yet another sight I wish these eyes didn’t have to see.

Still, she’s got less than a day of this left hopefully and then we can focus on her tummy healing up and getting her home.

Well, that’s all the scoop I’ve got for now... Later.

Gwendolyn's Out of the O.R.

I just finished visiting Gwendolyn in the NICU nursery. She's looking good under the circumstances as you can see.   Hopefully there won't be any unforeseen issues in her recovery and we can start the clock ticking on her return home.   If nothing out of the norm pops up, we're still on schedule for a reunion of Braelyn and Gwendolyn by Christmas... we hope to be out of the hospital no later than 10 days from now. Thanks again for everyone's prayers... they have been a major comfort yet again!!!       P.S. I think we are WAYYYYYYYY overdue for another photo of Braelyn on this blog so I'm going to try and rectify that situation tomorrow! Sorry.   I honestly don't mean to have Gwen photos up so often but it seems like her updates are just easier to understand sometimes with the help of some "visual aids."   Hopefully, I can get back to posting photos of the both of them together in the very near future... won't that be an novel concept!?!?!?

Waiting Until the Last Minute... A Castellano Trait

Well, from the "I should have guessed it" department, I didn't get a call from Heather until a quarter past four this afternoon that they were on their way to get Gwendolyn and bring her down for the operation.

Luckily, I made it to the O.R. prep room at the hospital just before she was taken in so I got some quick "Daddy" face time with her.

Unfortunately, we just got a call that they got a late start on things inside the O.R. With the impending shift change that takes place in the NICU (we've been told we're getting transferred back to the nursery after this surgery since she's going to be knocked out by anesthesia again) we won't be able to visit Gwen during shift change (from 7-8 PM). If you factor in the conclusion time for the procedure and add in her recovery and check-in back in the NICU, I don't anticipate getting in there before 7 PM hits. So, the smart money is on us not getting to see Gwen for another couple of hours and waiting until visitors can come again to the NICU at 8 PM... at least I'm starting to be old hat at this I suppose.

I guess it could be worse. At about Noon the nurse told Heather that they were just going to put off the procedure until tomorrow because they didn't think they could fit us in today after all. Luckily, thanks to a little bit of persuasion from Heather, they relented and said that they'd get it taken care of today no matter what.

In any case, I'll keep you all posted when we get to see her again.

A Cable Guy Routine

Well, I know it's been a good five days since my last update but as usual, that's because there wasn't much to report.

The pH test did show levels of reflux so we do know that in addition to the insertion of the feeding tube there will also be a procedure to tighten the sphincter that closes off her stomach from her esophagus. But the actual day and time everything would take place was still in question heading into the weekend.

Well, that's still kind of the question of the moment. Much like an appointment with the cable company, we've been told that Gwendolyn will have her surgery sometime today (Monday) in between 7:00 AM - 5:00 PM. I felt like telling the hospital "Gee, thanks for being so specific!" however my manners got the best of me.

In their defense, we are being "squeezed in" so that our journey out of the hospital can come to a conclusion as soon as possible.

Still, I find it ridiculous that they can't narrow down our procedure time to even within a three hour window.

Unfortunately, the Holiday Season means that I've got a lot of philanthropic activities with the Chiefs to coordinate at work and without a paycheck, we wouldn't be able to pay those hospital bills. So, I'm sure that I'll undoubtedly miss the whole thing as Heather and I are trading off today. I got here before dawn to make sure one of us was here to sign the consent forms should it be determined that she would start the day by getting her new tube inserted. Of course, no such luck there.

So, at least as I sit here I have the solace of knowing that by the end of today, we'll have what I hope is a brief recovery period away from coming home.

On the other side of the coin, my poor daughter hasn't been able to eat since 2:00 AM this morning because she needs an empty stomach so that stinks. They have her on an IV to make sure she stays hydrated but someone forgot to tell her stomach not to be hungry today because she's not a happy camper. The other issue is that she needs to stay off the reflux medication because of the surgery. So, her head has gotten more and more congested as the week has gone on. As we sit here now, it has made it more and more difficult for her to breath but this too shall pass. Once this procedure is complete they don't even know if she'll need medication for the reflux anymore.

And for those of you wondering, Braelyn continues to thrive... she had a pediatrician appointment this week (it was actually supposed to be today but needless to say, we're calling to reschedule). But it's for routine vaccinations so no worries. Outside of a battle she's been waging with gas lately, she's doing quite well. We test drove having her sleep the entire night in her crib over the weekend and she aced it with flying colors. In fact, last night she made it nine whole hours in between her late evening feeding and her morning feeding... even Dad can't say that! So, she's already growing up before my eyes... I get the feeling I'll have a pair of teenagers on my hands by the next time I blink!

;)

Well, I'd better got off my soap box for a little. Sorry to vent... I should just be excited that we're almost ready to blow this chicken coop ans reunite the girls!

I hope you all have a great day and we'll keep you posted.

A Plan Moving Forward

Well, little Gwendolyn’s situation finally has some direction.

After Monday’s swallow study results, the O.T. attempted feeding Gwen. Unfortunately, that feeding did not go well. As a result, the decision has been made that Gwendolyn will have a G-tube placed in her stomach as her throat is just not ready for regular oral feeds yet.

We will monitor her growth and hope that it will be a temporary situation. Unfortunately, the swallow study is the best route to monitor her progress. Because of the extreme radiation involved, she can only be given those in six-month intervals for five minutes at a time. So, Gwen will have this feeding tube in for at least six months. If she’s still having difficulties during her next swallow study, it’ll be another six months before we can retest her, and so on.

Also, she is in the midst of completing her pH test as we speak to diagnosis her reflux situation. If it is determined that she does have reflux then when they insert her G-tube they will also close off the sphincter that typically connects the esophagus to the stomach. If not, then they will only insert the feeding tube.

The good news is that both procedures will take place at the same time, will be minimally invasive, and can be reversed with relative ease. They’ll enter via Gwen’s belly button and then insert two small pin-sized probes on either side of her stomach. That’s all they’ll need to complete this procedure. Typical recovery is about one week in length. So, IF we can get the results of the pH test deciphered by the end of the week, we should be able to get the G-tube and (if needed) stomach close off scheduled to take place next week. Assuming all goes well with those procedures and the subsequent healing process, Gwen would only be in the hospital for another week after that just to ensure her body’s handling everything okay.

So HOPEFULLY we’ll have her back home with Braelyn by Christmas. What a ride it’s been. Still, we are so blessed that we’ve got direction and that Gwen’s been such a trooper throughout this process.

As all the above gets finalized I’ll be sure to update... until then.

***Little side note from Mom.....Gwendolyn smiled her first "non-gas" smile at me today! It brought me to tears. Our baby girl is going to be OK. ;-)

And, thank you to everyone who has posted comments of support to us. We can't tell you how much your love and prayers has helped us get through this time with our girls.

-Heather

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.