Tuesday, December 29, 2009

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…

Monday, December 28, 2009

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!!!

Sunday, December 27, 2009

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.VAdd Image. 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!

Saturday, December 26, 2009

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.

Thursday, December 24, 2009

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!

Wednesday, December 23, 2009

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!

Saturday, December 19, 2009

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...

Friday, December 18, 2009

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.

Wednesday, December 16, 2009

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!

Tuesday, December 15, 2009

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!!!

Monday, December 14, 2009

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!!!

Friday, December 11, 2009

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.

Thursday, December 10, 2009

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!


Tuesday, December 8, 2009

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.

Monday, December 7, 2009

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.

Wednesday, December 2, 2009

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