All Hallows Eve Ramblings

So, I don’t really have a lot to update from yesterday.

Firstly, Gwendolyn’s apnea has unfortunately gotten worse. Last night, she stopped breathing between three and five times an hour (that wasn’t a typo… I did NOT mean to say three to five times the entire night but each and every hour. In fact, I'm sad to say that it happened four times just during the course of me penning this post tonight!). Every time, the bedside monitor alarm went off and nurses came running into our room. Let’s just say that neither Gwen nor daddy got a whole lot of sleep last night.

Other than that, the hospital pediatrician still feels as though the cause for her breathing issues is a combination of reflux and an upper-respiratory virus. Unfortunately, they still have yet to be able to identify the second part to that equation. They put Gwen on some medication to hopefully curb the reflux. However, no medicine can be dispensed on the other item until the issue is diagnosed.

We had hoped that the first cultures would be back today but they still aren’t done yet. The other set of cultures won’t be started until tomorrow. Strange to think my daughter’s health hinges on a set of petri dishes in some libratory. Regardless, if the cause of her respiratory issues doesn’t show until the completion of that second culture, it might still be another few days until we even know WHAT the culprit is. Then we’ll finally be able to begin treating her. Right now, that’s really the scariest part. Even with the reflux treatment we’ve started, I fear that Gwen’s due for a few more difficult nights as whatever virus this is continues to cause congestion.

Again, thank goodness Heather was so diligent about getting this checked out. The way things have transpired, we could have easily been at home before things got REALLY bad like it has the last 24 hours or so. I can’t imagine being at home while this was all unfolding and having to scurry to the emergency room!

So as you can see, I really just have a whole lot of the same to report… Gwen’s getting great care but we still don’t know what the exact respiratory virus is that she’s contracted. As a result, she stops breathing on a fairly regular basis as she sleeps in between her feedings.

I do have a couple of quotes from our neurosurgeon (who I think bears a striking resemblance to Dr. Emmett Brown from Back to the Future fame, just with slightly shorter hair… but I digress) that I found entertaining and wanted to share. On the topic of my daughter’s feistiness, he coyly looked at me with a wry smile and said, “Yes, it's obvious that this child doesn’t like to be messed with at all.” That’s my girl!

His other quote to me was that I needed to get more sleep tonight because he’s “...the one that gets paid to stay up and worry all night.” Yeah, because it’s so easy to sleep when you know that at any minute, your daughter is going to stop breathing. And even if I COULD talk myself into sleeping under those circumstances, the blaring of the monitor going off when Gwen does stop breathing would render the practice impossible.

Regardless, that’s all I have for this post. So much for not having much to write I guess. I do hope all you ghosts and goblins had a great day today. Here’s hoping that we get an answer or two tomorrow.

No Tricks, All Treats

Our little "Pumpkin Heads" (a.k.a Braelyn McKee & Gwendolyn Marie) wish you all a very happy Halloween. May you finish your day a bag full of your favorite candy!!!

A Day Without An Answer

Tonight’s update has a lot more questions in it than answers… but at least the questions left will hopefully lead to a conclusion devoid of surgery.

What we learned today is that the breathing issues Gwendolyn’s exhibited likely have nothing to do with any neurological side effects from the spina bifida. As a result, we can hopefully cross any low-level brain surgery from the equation in the short term.

However, what we don’t know for sure is the exact collection of ailments that’s combined to cause the issues. What’s been theorized by individuals possessing a much more extensive college catalog than I is a combination of reflux combined with an upper-respiratory virus in the bronchitis family.

The hospital pediatrician told me tonight that he THINKS the issue is that the slightly abnormal flap in her throat discovered by the Ear, Nose and Throat doctor’s scan yesterday is agitating an equally common case of newborn reflux. That reflux combined with a form of bronchitis would explain the worsened symptoms when she eats, the congested squeaking at other times and, believe it or not, the apnea she exhibits for time-to-time. Apparently the thought is that the combined pressure from the inflamed respiratory system and the burning irritation from the reflux sometimes puts pressure on a nerve that connects to the part of the brain that tells the body breath. The nerve is slightly pinched, therefore reducing the sensation to breath at certain points.

Let me add this disclaimer… I had a LONG conversation with the hospital pediatrician tonight. The majority of that reminded me of my French classes in high school. There was a whole lot of talk using a ton of words that sounded interesting but that I couldn’t repeat to save my life. So, what I’m writing on this topic is based on the layman’s description that followed the possible diagnosis. I say this only to caution that this is what I THINK he was relaying but as with any medical conversation, I might have lost some of it in translation.

Anyway, I did press the pediatrician and asked for verification that what he was telling me boiled down to the fact that Gwen doesn’t have a physical defect that we can see right now causing her symptoms… so the solution to her ailment will be mediation and not surgery. He confirmed that to be correct but he also cautioned that we might be a good 4-5 days away from knowing exactly what virus/infection is causing the respiratory limitation and therefore, a ways away from plotting out what course of medication is best suited for her situation.

So basically we are in the ever popular hurry up and wait camp. Yet, where we are right now is much better than were my head was traveling last night as I sweated poor Gwen going through yet another brain procedure. (Of course just as I typed that, her blood-oxygen meter dropped down to 63-percent causing her monitor to flash like the night sky on Independence Day and the nurses to pull their best Usain Bolt as they sprinted into our room. Luckily, we calmed her down with the help of her bottle but I guess you never are fully out of the woods until you are healed!)

They are also going to try and wean Gwendolyn off the oxygen. The fear is that for a one-month old, being on the oxygen can be addictive and cause the lungs to get lazy because they don’t have to work hard to get the correct oxygen saturation in the blood.

Anyway, as we sit here tonight, we still don’t know exactly what’s wrong with Gwendolyn. However, we do know that the most serious possibilities have been discounted and the more manageable are what we have left on the board. (Where’s Dr. Gregory House when you need him!)

Unfortunately, I was told tonight to expect a stay of about two weeks for Gwen. They need to officially diagnosis the issue, set the treatment schedule, administer it, then be sure it worked. She won’t be released until she’s been symptom free for at least a 24-hour window.

Oh, on top of everything else, it seems that Gwen’s got a urinary tract infection. The only good thing there is that it is so minor that they don’t even think it will require extra medication to correct.

I guess that’s all I know right now… I’ll be sure to not only have a Halloween entry for you all tomorrow but a photo of BOTH my precious girls! (I don't want Braelyn to get forgotten in this mess... I haven't seen her in a day and miss her terribly already!)

It’s déjà vu all over again

Well, it is with a heavy heart that I write this blog entry. Unfortunately, I sit here on Thursday evening next Gwen at a familiar location.

She has been readmitted to Children’s Mercy Hospital.

Today started innocently enough. For the past month (yep, believe it or not, Braelyn and Gwendolyn are one month old today) Gwen has had some respiratory issues. Typically they occurred as something of a choking fit around her feedings but they also happened sporadically without rhyme or reason.

When Gwen was initially discharged from CMH, we brought up the symptoms we saw but we were told not to worry... that they would resolve themselves once she could be placed on her back and the congestion fluid could properly drain down her throat. In the following two weeks that we’ve been home, the choking has progressively gotten worse even though she's been on her back for extended periods of time. Each time Heather brought up this issue to a medical individual, she was told it was probably nothing.

To my wife’s credit, she knew it was something. She continued to diligently call and eventually one of the spina bifida nurses at the hospital agreed to arrange an observation for her. This morning we had that appointment in the Occupational Therapy Clinic at CMH.

We went in this morning and Gwen started exhibiting the same behavior as she had at home rather quickly. Initially, the nurses didn’t seem very concerned… they weren’t sure what the cause was but they didn’t seem to see a major cause for concern. Toward the end of this observation, they hooked up Gwen to a device that monitored the oxygen percentage of her blood. Typically, they like to see it in the 93-100 percent range. When Gwen progressed though her chocking fit, it hovered as low as 71.

Once that figure popped on the screen, the nurse calmly looked at Heather and I and said she’d be right back. Heather and I had no idea yet that this was a very bad thing. Within 30 seconds the door to our room opened to a flurry of activity. We were immediately moved, Gwen was placed on oxygen and we were told we needed to be admitted ASAP because that type of an oxygen deficiency was cause for immediate concern.

Needless to say, Heather and I were equal parts frightened and relieved. I say relieved because again, Heather knew deep down inside her gut that Gwen wasn’t right but she couldn’t get anyone to listen. Now at least they understood that we weren’t just over-reacting parents.

Anyway, after what seemed to be hours but was likely no more than 45-60 minutes, we were admitted and in our room. By this time, it was 11 AM and poor Gwen was throwing a fit. You see, her last feeding was at 6 AM. Because of all the commotion, the observed feeding at the O.T. office that morning was interrupted before it really got very far into it and so Gwen was now famished. Of course, they didn’t want her to eat until they could get her looked over by a doctor… and after the doctor finally saw her, she said Gwen needed to wait until they were ready to administer an MRI. And with it being a particularly busy day, Gwen basically wasn’t able to eat until 4 PM.

So, here I sit in her room at CMH without a whole lot to share. I still haven’t heard the results of the MRI. I have a feeling I won’t know for sure until tomorrow. She did also have a scope of her vocal cords by the ear, nose and throat doctor. The results of that were promising in the fact that there wasn’t a “smoking gun” to be found. We were told that her vocal cord activity was normal and that she had a mild throat flap situation that is actually fairly common in newborns (although most of those infants are able to compensate for it themselves). While we won’t know for sure until neurosurgery looks over the MRI, the E,R & T doc said that given what he saw in the scope, he doesn’t feel Gwen’s issues will require surgery… at least not now.

One of the big concerns for Heather and I going in was that this choking was the result of the brain being compromised either because of her spina bifida or the resulting hydrocephalus. Either of those circumstances would require a follow-up brain surgery to correct the defect.

Without a doubt, Heather and I are praying that the MRI is clean and confirms the E,N & T doc’s assessment. If it does, then Gwen will really just require additional work with the O.T. to hopefully curb her choking. Worst-case scenario under a situation without brain surgery would be that the O.T. can’t help and we’ll have to tube feed her until her throat is able to mature and grow stronger.

Needless to say, Heather and I are once again soliciting your thoughts and prayers. You all were fabulous and got us through our initial stay. Fingers crossed that this stay too is a short one and will have as happy of an ending as possible.

As I get updates, I’ll continue to post them so I guess my hiatus from daily blogging will be short lived… at least in the interim.

Have a good night and thanks again for all your support.

Bottles and Pigskins Don't Mix!!!

I submit the following photographic evidence as proof that men should get a pass when it comes to administering a bottle to their children on Sundays:

Gwen and I shortly after a feeding I gave her BEFORE the start of NFL games today. Note that nothing seems out of the ordinary here.

The Peanut and I shortly after a feeding I gave her DURING an NFL game today. Note that nothing seems ordinary here period... now that's one heck of a milk mustache for you!

Mothers heed my warning... friends don't let fathers feed their kids (or do anything else of substance for that matter) during football games. Of course, it could have been worse... can you imagine the carnage I would have inflicted on poor Braelyn had the Mets actually made the playoffs this year?!?!?! (I know, that won't happen for quite some time given their present situation... but I can dream I suppose.)

And yeah, I guess you could say that photo comparison was just too funny NOT to post. ;)

Sorry Braelyn... I'm sure you'll cringe at the sight of that photo in a couple of decades! Just remember that believe it or not, daddy loves you!

The Week That Was

Here we go... one week into my new format and I'm actually getting this update in on Saturday... not too bad!

Where should I start... well, how about with the girls health? We had a pediatrician visit with Braelyn to start the week. Our "little" daughter has already shot up to five pounds, five ounces. At this rate, she'll catch her sister in no time. Even though the visit was specific to Braelyn, the pediatrician also weighed Gwen. She's at a robust (compared to her sister that is) six pounds, eleven ounces. Everything else checked out great with Braelyn so now we can hopefully synchronize these visits with each girl moving forward.

As for Gwendolyn, she had a followup visit with the plastic surgeon. Luckily, her back incision is healing quite well. She's under no restrictions now for the length of time she can be on her back. No follow visit with plastics will be needed and she only requires the application of normal skin lotion to help even out the marks from the stitches.

Gwen is still having a frequent gaging reflex when she feeds and sometimes breathes. As a result, we've got a visit the end of next week back at Children's Mercy Hospital. At that one they'll observe her eating to see the extent of the chocking. Hopefully it's nothing worse than a bad case of reflux. In an absolute worst-case scenario, she could need another surgery to fix the problem but we remain cautiously optimistic that it won't be anything THAT serious. (fingers crossed)

Outside of the doctor's visits, the girls are doing well. Gwen has begun to prove herself a little more independent than her sister. I do think that Braelyn would be held constantly if she had it her way. Her two-minute younger sister has her moments of clinging but she is also good with alone time in her swing or vibrating chair from time-to-time... which is a nice reprieve.

Now THIS is the only thing better than having a beer for each hand! ;)

The weather was so nice this weekend that Heather and I ventured around the block with the girls in their stroller this afternoon. They were pretty wide-eyed and very observant the whole time. I think they started to believe that the "world" began and ended with our living room so it was nice to get them out of our house for a moment.

We also had our newborn photos taken this week... we decided to wait until Braelyn and Gwen were both out of the hospital until we scheduled them. So maybe next week we'll have some "professional" photos to share. In fact, being the proud parent that I am, I'll probably post the best of them as soon as we get them back from the photographer. Who knows, maybe next week will be a two-for-one entry on the site if I get them in enough time.

Well, that's all for now. Hope you and yours are doing well.

A New Plan Moving Forward

So, sorry that I went "off the grid" these last few days.

The sad truth is that I came to an unexpected conclusion of late. I actually have less "down time" to write blog entries when all is well with the girls than I ever did during the Castellanos time playing a round of hospital musical chairs.

As many of you know, this blog was created to keep everyone abreast of the girls health in the days after their birth. The original plan for the blog was that it would conclude shortly after the girls arrived home safe and sound, which is where we sit now.

However, as is typically the case, a funny thing happened between the start of the blog and now.

I've had several of you ask that I keep it going and honestly (these last few days not withstanding) it has seemed much less a task than I initially anticipated.

Therefore, I've decided to keep the blog going. After all, what father wouldn't like an outlet to brag on his beautiful girls?!?!?!

That being said, it's become painfully evident to me that life with a full-time job, two infant girls and a beautiful wife isn't conducive to sitting down on a daily basis to scribe updates.

Ergo, I've decided to kind of "downshift" and make my blog updates a weekly endeavor. So my promise (or at least my sincere hope) is that I'll be able to sock away just enough time each and every week to post a recap by each Monday morning. Some weeks I'll post on Saturday and honestly some weeks it might not be until Tuesday. Still, for those of you that are interested and want to know how Braelyn and her "little sister" Gwendolyn are doing, you've now got a good idea as to when you can log on and find out.

With that said, I'll leave you with two photos... one of each of our girls:

Braelyn McKee

Gwendolyn Marie

See what I mean? How can I NOT share photos of those two Angels! BTW, kudos goes to our new mommy. She's by far the aspiring "photographer" in the family. In addition to the two above, she's responsible for the majority of the photos that have been posted on this blog.

Again, for all of you that asked me to keep this going, I humbly say thanks!

We'll talk to you in about a week... until then.

Daylight Dreaming

Einstein’s Theory of Relativity, Newton’s Principals of Gravity, da Vinci’s Virtual Man… and Castellano’s “Actuality of Lost Sleep.”

Okay, so that last one is still a work in progress.

;)

In fact, I’ll be more than happy to discontinue my research altogether once Braelyn and Gwendolyn learn to at least sleep for an hour in-between feedings.

Allais that seems like a pipe dream thus far.

Everyone tried to prepare us for what evenings with twin infants would be like but until it’s experienced, there’s no way to fully grasp it.

Still, I’d have it no other way.

The girls are fairly healthy given their circumstances and we couldn’t be happier.

Sorry for setting a new precedent for late blog entries… almost a full half-day behind is pretty embarrassing. The continued good news is that there are really no newsworthy items that were missed out on.

Talk to you soon.

A Castellano Road Trip

Today marked the first official "Castellano Family Road Trip." Honestly, I wish I could report that the destination was some posh, swank Kansas City stop... but that was far from the case!

Alas, we packed up the Castellano Roadster for a jaunt to the pediatrician. And the term "packed" encompasses it perfectly. It's funny because it doesn't sound like much... but two car seats and a full diaper bag actually take up a lot of room in our little Hyundai, not to mention numerous trips to and from the car for packing prior to departure.

The good news on our trip is that Gwen aced her visit with flying colors. In fact, those early morning feedings these initial days home must have done her body well. She gained two ounces in her first two days since being discharged from CMH.

Braelyn reminded rather indifferent to the whole experience as she slept through the majority of the trip. Of course, that might have something to do with the fact that "The Peanut" started off her day with the first "real bath" of her brief young life. After that, she apparently was just spent, hence the extra nap time!




Poor Gwen's cord "stump" is still hanging on. The combination of that and the six week additional heal time on her surgical wounds means she's still on a moratorium from such endeavors herself. Instead, she's still on a steady diet of sponge baths.

After the doctor's appointment, Dad spent the majority of the day back in the office toiling away. So, today also marked the first time that Mom spent the majority of the day home with the girls without my intervention.

The good news, is that Heather was still talking to me when I came home from work so she must have made it though just fine without dear old dad!

=P

Well, so much for another busy day with the Castellanos. At least the weekend is just around the corner!

No Need to Worry

So as to not rouse any concerns, I wanted to be sure and post an entry to let everyone know that Braelyn and Gwendolyn continue to do well.

Unfortunately, Gwen's on an every four hour feeding schedule while Braelyn's have been at more accelerated intervals, shall we say. As a result, my "down time" was at some what of a premium on Tuesday. Let's just say that early this morning I choose a couple of hours of sleep over typing this out... sorry!

In any case, save for the sleep deprivation which is obviously to be expected, all is going great.

Gwen's got a routine pediatrician visit today. Other than that, we hope to have a very mundane Wednesday.

So, I'm sorry that Tuesday's update is abbreviated and that it stretched into early Wednesday morning but the good news is that nothing outside of the typical two-week old activities are going on here for the Castellanos.

Good night... or good morning... or good whatever time it is!

;)

Our Family's Complete

Well folks, I'm writing today's blog as a VERY proud daddy! As I peer into the bassinet, I see two beautiful girls peacefully resting... well, I guess you can get the "peaceful" vibe more if you ignore Gwen's snoring, but I digress! ;)

Honestly, Heather and I are ecstatic to report that there were no last-minute issues and we were blissfully able to take Gwen home from the hospital this afternoon.

The only interesting dilemma to report is that we are still trying to synchronize their schedules so when one's up, the other is eating. Once that one finishes and gets to sleep, the other begins to rouse herself out of a slumber for food... Hopefully for my sleep pattern's sake, we can get them on the same rotation shortly!

Because of that, we still haven't really been able to observe them together when they are both awake. Still, something tells me they'll be just fine with one another... If not, we'll have plenty of opportunities to work on it as the years and decades roll past.

I don't want to sound like a broken record here, but Heather, I and the girls just want to reiterate again how humbled we have been with the outpouring of support that's come our way. We are blessed not only to have our two girls at home with us but to have such a tremendous support system of family and friends. You've all gone above and beyond in lending a helping hand and offering well-wishes.

On a personal note, I want to thank Heather for being our family's rock. This entire situation has been far from easy... and I guess it will never completely be over with. Still, she's often kept me from over reacting (a trait of mine that's getting worse with age it seems) and helped us all though this difficult time.

Okay, enough of the sappy stuff. I'll be back in the office tomorrow for an event we've got going on but something tells me that I'll still find enough time to post an entry dotingly scribing about my girls!

Good night all!

Mere Hours Aways

Well, today was the type of day you just wanted to hurry up and end. Knowing that Gwendolyn will be home tomorrow, we just wanted to get Sunday over and done with so that we could pick up our little girl and bring her home once and for all.

I will say that this was probably the easiest "good-bye" I've had to say to Gwen as we left the hospital. It's been difficult for Heather and I juggling the responsibilities of being parents to both Braelyn and Gwendolyn. Still, as we prepared to leave CMH and head back home to Braelyn today, there was solace for me knowing that we'd be able to reunite the girls tomorrow.

The only "news worthy" update today is that Gwen was given the official "okay" to be turned on her back. Even though she can't stay on it for extended periods of time, it was a great sight to see. Within six weeks, her wounds will be completely healed and she'll essentially be able to be held just like her sister.

Braelyn continues to be a very easy going baby. She'll still fuss from time-to-time with nursing but other than that, she's been a breeze. In fact, it's almost a shock when she makes a fuss at all.

It'll be interesting to see how things will change when her sister comes home. I'll really be on the lookout for how they react to one another. I mean, they spent 38 weeks in the womb together but the first two of their life apart. I wonder if they'll immediately know that this was their neighbor as they grew in Heather's womb all that time or if it will be like they are meeting for the first time.

I guess we'll see tomorrow.

I can't wait to compose that blog entry and post the photos!

A Regular Ol' Saturday... Kind Of

As Kansas City braces for it's first frost of the fall, the Castellanos had a fairly uneventful Saturday. Heather and I made our daily pilgrimage to CMH to visit Gwendolyn. She always seems to do something to make me smile... most of the time all she has to do is lay in her crib and squeeze my finger (and trust me folks, that girl's got a grip on her!) while she looks up at me with those wide eyes.

I must say, if it is possible to denote an individual less than two weeks old as my hero, she is. She's been through more in her little life than I have in my rather mundane 33 years on God's Green Earth. Yet, she loves getting fed, sleeping and clean diapers. As long as those three things have sufficiently been taken care of, she pretty much lays content in the ICU nursery. Translation, if not for the wounds healing on her head, back and abdomen, you'd have no idea she's been though all she has thus far. Of course I'm pretty bias, but she and her sister both are just such a special gift to Heather and I. Besides, who couldn't just melt at the sight of a face like this:

In any case, we can't wait to get Gwen home on Monday... well, we honestly are a little apprehensive about having both of the girls home if only because we've just figured out the right way to handle one child and now we're introducing another into the fold. It'll be a challenge of course, but it'll undoubtedly be a labor of love! And Braelyn's passive nature will help compensate for the rather bold personality of Ms. Gwendolyn Marie.

Getting back to our Saturday, while Gwendolyn gets ready to pack her bags for home in a couple of days, Braelyn had a productive day herself. This morning she had her second sponge bath since arriving home... speaking of precious, that girl constantly makes me laugh with her myriad of wide-eyed looks. I wish I knew what was on her mind when she frills her brows, puckers her mouth in a circle and stretches her eyelids as wide as they will open, sometimes while crossing her eyes. She's quite a cutie in her own right. Heather and I can't wait for her cord to fall off so we can give her a proper bath. Unfortunately we've been told that Gwen will have to wait about six weeks until her wounds fully heal for a proper bath.

Anyway, after her bath, "The Peanut" hung out with Grandma while Mom and I visited her little sister in the hospital. When we got back, Braelyn had her first introduction to cousins Madison and Lindsay. It was rather strange seeing just three of them and know that one was missing. But I suppose that soon enough they'll be running around the house driving Uncle Kyle, Aunt Susan, Heather and I all crazy with talk of princesses, Dora and who stole who's crayon.

Well, wish I could say that I apologize for yet another post devoid of a cliffhanger but I rather enjoy updating you all on everyday activities that don't cause knots to form in my stomach. We're almost resembling a "normal" family... well, you know what I meant!

;)

Until Sunday...

Friday's Nearly in the Rear View Mirror

Well, this turned out to be a very frantic Friday. The good news (in addition to the fact that it turns out grandma does NOT have shingles after all) is that it sounds like Monday is the set-in-stone date that Gwendolyn will be joining the rest of our family at home.

Due to the health environment in which we all live in, that "test drive" overnight stay prior to Gwen being released has been scrapped. The doctor's weren't too keen on exposing Braelyn to the other sick children at CMH and vice versa. So, Heather and I will arrive at the hospital on Monday morning, await the final doctor rounds of Gwen's stay, wait for her to endure one last test, and then go through our discharge paperwork.

I guess the good news is that with each meeting, we hear positive feedback on Gwen's progress. The physical therapist said her range of motion was awesome given other kids facing a similar situation. It's just more proof that we've been blessed thus far.

Looking ahead to Monday, let's just say that I hope the discharge process runs a little more on schedule than our meetings have these past two days. We were suppose to be done today at the hospital at Noon. We didn't actually leave today until 3 PM. There's just so much information to absorbe, it can be draining at times!

On a positive note, that delay at the hospital did give grandma a little longer alone time with The Peanut.

As for Braelyn, today concludes her first full week at home. As you can tell from this photo, she's not always so sure we know what's going on... but day-by-day, we seem to get better and better at this parenting thing.

Now if Monday would just hurry up and get here so that our WHOLE family can hang out at home together!

So Much to Learn

Thursday taught Heather and I that there is a lot of followup needed for Gwen as she grows up. We had some meetings on tap at the hospital that were necessary before her discharge. One was with the Spina Bifida Clinic. There was so much to cover and go over that our heads were spinning. We even came away with a three-ring binder full of stuff as well as another "guide" of things to look out for once we get Gwen home.

It's funny. As Heather will tell you, I am a planner. I map things out in advance and as I progress though them, I dutifully check things off in my mind as they transpire. This week has humbly taught me that planning is sometimes not possible. Before the girls came, my tough was that by the time we made it to Week 2, I'd be able to work more part-time in the office, splitting my time between home with Heather and Braelyn, Gwendolyn at the hospital, and work at the office. Let's just say I miscalculated, as you can tell from the timing of this post.

Just scheduling these consultations at the hospital, let alone sitting through them, has been a task. In the next couple of days we will have met with representatives from the Spina Bifida Clinic, physical therapy, social services, neurosurgery, plastic surgery, and possibly our discharge meeting. I'm sure there will be a couple others that I don't even know yet. Each of these are more than just a quick "howdy" to say the least.

But I will say that while Gwendolyn will obviously need a regular series of visits to the Spina Bifida Clinic for the rest of her life, Heather and I came away from the meeting encouraged. There is obviously a lot we won't know until she grows in terms of any limitations she'll experience but as the nurse was going through the spectrum of items that spin bifida covers, there were many moments that she'd pause and note that Gwen currently exhibits symptoms that are in line with children affected in a more mild case.

It's already been a difficult journey... especially as a first time parent that doesn't have a solid baseline. There's so much that goes into being a parent... even more so when you have a child that will need specialized attention as she grows. Yet, as we sat there, we again began to realize that Gwen's situation could be so much more severe than it hopefully will be. We're flanked in the NICU by children with serious cardiovascular or digestive issues... it just makes you blessed for the things you have.

I need to send kudos to Jan Cox for subbing for Grandma and watching The Peanut for us during these hospital visits. I honestly don't know how we would have gotten through this had she not stepped in. Luckily, Braelyn is an easy subject when it comes to baby sitting. Still, it's been much easier to focus on Gwen's situation while we are at CMH knowing that Braelyn's in good hands.

Now that I've spent the majority of this blog not really updating anything in direct regards to the girls, they are each doing marvelously. Braelyn's still getting the hang of nursing and seems to not be a big fan of sleeping in the late evening. Still, she's far from a fuss.

For her part, Gwen continues to progress. Each time her discharge date gets set, there seems to be a change. Right now it looks like the target is going to either be Monday or Tuesday... but just like the weather in Florida, just give it five minutes and it'll inevitably change.

Still, she's doing so much better right now than I ever envisioned. When we visit her in the hospital, you almost forget that all that she's had to deal with because she seems so close to where her sister is back at home. Speaking of that, Heather and I can't wait to get Gwen home and to reunite her with Braelyn. Still, we respect the process and are blessed to know she will be home with her sister sooner than later.

Friday morning will bring a slew of more meetings at the hospital. But again, each one gives us promise and hope while reinforcing that Gwen and her feisty attitude are going to be just fine as she grows.

Hump Day Thoughts For Grandma

Before I get to an update on the girls, they each asked me offer a "get well soon" to grandma. Unfortunately, there's a chance that she's come down with a case of the shingles. She goes for a followup doctor's visit on Friday but since she first got the word on Monday, she hasn't been able to spend any time with her newest granddaughters. Her doctor wasn't too keen on her interacting with one-week olds until he knew for sure if she had shingles or not. Here's hoping that she gets a thumbs up on Friday and can reacquaint herself with the newest additions to the family!

But even though she hasn't been able to spend time with the girls, Braelyn especially has been getting a big assist from grandma. Since The Peanut weighed even less than we thought, she couldn't fit into any clothes. The last two days, grandma has made "preemie" outfit runs to make sure poor Braelyn is dressed in clothes that aren't falling off her.

As for Braelyn, she's made quite a fuss of late. A couple of days ago, she seemed to finally get the concept of nursing. However, these last couple of days have been challenging to say the least. Still, she just finished a VERY good feeding session so hopefully she's getting back on track. Her morning on Wednesday got off to quite a start as she got her first bath at home.

One thing we know for sure about Gwendolyn is that she won't have any nursing issues. Our little chunk took to both of Heather's breasts during her bed-side feeding with mom today. Good for her because she needs all the strength she can get. Both her head and kidney scans came back positively... we're not sure if that will once again alter our timeline for her release. We were told that since today's kidney test went so well, the last test scheduled for Friday might be canceled altogether.

Gwen's also been given a four-part exercise regimen by one of the hospital's P.T.'s. We're going to try and meet up with her later this week so we can get a first-hand look at what therapy we need to ensure Gwen's completing after her release. Actually, we've got quite a few hospital meetings that need to transpire between now and release day (whenever that finally happens). Between the physical therapist, lactation specialist, spina bifida clinic staffers, neurosurgeon and plastic surgeon consults, etc, we'll be spending more time at the hospital than the actual medical staffers do I fear. Still, it'll all be worth it in the end!!!

So that's all that's fit to print for Wednesday... the good part of these latest blog entries is that they are honestly getting closer and closer to the typical "our first babies" updates, which is nice. I can't wait for a medial jargon free blog entry... hopefully I can post one by early next week!!!

Have a good one!

A Cat Nap With Mom

Well, at least late-night feedings lead to morning moments like this.

It was such a precious photo that I just had to share it with you all.

A Sleepy Tuesday Recap

As I sit here at 4 AM in the morning typing Tuesday's entry, I'll caution that this blog entry will be far from an epic. In fact, this will be closer to a "Cliffs Note" of Tuesday's activities than it will be "The Iliad."

Still, that's not to say that today was a boring one... my late-night entry has more to do with a fussy eater at home who just can't get comfortable than it does with a lack of anything to scribe.

Speaking of The Peanut, it's been an "all or nothing" type of feeding day with her. Either she's acing a nursing session or she's fussing with a bottle after never really latching onto her mother. I guess you could say that Braelyn seems to be a spurt eater, which probably has to do with her getting so tired out following a good feeding than anything else. I'm sure as her size increases, she'll get better stamina. Braelyn did have her first extended car ride today as we took Mom to her post-cesarean check up followed by a trip to CMH so Dad could visit with Gwendolyn. Like most babies, the rhythmic humming of the tires on the road proved to be quite an soothing way to induce sleep.

BTW, that doctor's check up went great for Heather. She still can't drive and needs the assistance of her pain meds but the nurse said she's doing very good and continues to progress each and every day.

As for Gwendolyn, today was a cool day of experiences for us with her. Heather was able to breast feed her bed-side at the hospital for the first time. Let's just say that Gwen took to the breast a little easier than her sister. She basically just latched on and immediately started gulping! It was kind of a surreal moment that left me a little emotional as I watched it all unfold. There's been an update on her release schedule. On Wednesday (later this morning), she's still scheduled for another head scan to determine how the hydrocephalus has decreased since the shunt was put in. She'll also get a scan of her kidneys.

However, it doesn't look like she'll be discharged now until Tuesday. Apparently there's one further test that needs to happen and it can't take place until she can be placed on her back. That should be cleared to transpire in a few days. So now that test will take place on Friday and, because of the weekend lag, the results won't be back until Monday. Ergo, we won't be able to take her home until Tuesday.

The reason for the gap between the test results coming in and discharge from the hospital is because before she can come home, we have an evening family "test run" of sorts that will transpire. Basically, we get to grab Braelyn and spend the night at the hospital in a isolation area with Gwen. It allows us to get a sense for what it will actually be like at home with Gwen so if any issues arise, we'll have a nurse right there to guide us though it that first time. While this isn't what we envisioned when we thought of our first night together as a family, I think it will go a long way toward making sure that we are as prepared as we can be to take Gwendolyn home and care for her.

Well, I guess that's it for now. Hopefully I'll have some glowing test results to post after Wednesday's scans.

Sorry again for the late update.

Talk to you all soon!!!

Our Busy Monday

Before we get rolling with today’s blog on the girls, Heather and I want to thank the countless individuals that have supported us during this last week. There are several churches and prayer groups that are keeping our girls in their thoughts, friends that have dropped by with food, others that have offered to lend support by watching one girl as we go to visit the other and still others that have sent texts and phone calls with encouragement. To all of you, we can’t even begin to tell you the amount of gratitude that we feel. Quite honestly, it’s humbling to know that so many individuals have come to our assistance. Even more so, it’s amazing that some of the aid has been offered by complete and total strangers. To all of you, THANKS!

Now for the important stuff… let’s just say that today was an amazingly positive day for both of our girls.

The Peanut had a pediatrician visit since there had initially been concern with her small size as we were discharged from the hospital. The good news is that Braelyn checked in at 4lbs, 6ozs. That means that she’s already gained back all the weight she lost after birth. The pediatrician told us that typically, that happens after two weeks. So, the fact she did it in just a hair under a week is awesome! She also told us that we no longer will need to supplement Braelyn’s feedings with formula unless she’s had a slower than normal session on her mother’s breast. Needless to say, that was excellent news.

Mom and "The Peanut" Hang Out At Home

Apparently, Braelyn felt a need to continue the momentum that her sister initiated earlier in the day. Before Nana & Poppa left to visit with cousin Ava, they spent the morning at CMH with Gwendolyn and I. During rounds, the doctor told us that there is a “very good possibility” that Gwen will be released from the hospital on Friday. That was very unexpected as we kept being told that 10 days after her surgery would be a “very aggressive” timeline for her discharge. However, they told us that as it stands now, the only justification for her continued stay is the healing of the incision site on her back and that she’s got a real shot of leaving a mere eight full days post-operation. She’s done so well that the only responsibilities the nurses assigned to her typically have to carry out is to feed her and change her dirty diapers… I try to be there for as many feedings as possible but then “step out” anytime there’s a dirty diaper to attend to.

;)

A little after the updated on her possible early release this morning, the plastic surgeon came by Gwen’s bed and removed the drainage tubes from her back. That’s yet another step in the right direction. She’s tentatively scheduled for a head scan and kidney function assessment on Wednesday. If all continues in a positive direction with those, there a very high likelihood that the girls will be reunited this weekend. Also, during tonight’s visit I was informed that Gwen has been put on a “diet” because she was eating so much that her stool was getting too runny. A healthy appetite is a great sign. Apparently, it’s proof of yet another trait she shares with daddy. She also no longer has the IV patch in her head which will undoubtedly please Nana as she came to detest the fact it was in place on Gwen’s head but never used.

Gwen Keeps Looking Better and Better... But Don't You Dare Touch Her Binky

Heather and I are still a little unsure as to the steps we’ll have to take after this hospital visit for Gwendolyn is complete but we’ll get briefed by the Spina Bifida Clinic here at the hospital before we are discharged. We’ll also have a sit down with a case worker to find out what programs we qualify for in terms of her future care.

On a personal note, for those of you that know me well, it comes as no shock that I’ve a fairly open individual. Still, I’m known to hold in my emotions until they reach a breaking point. So that’s why I wanted to issue a personal note of thanks to those that have read this blog. Honestly, it started as a way to share updated information and photos of the girls. However, as the week progressed, I’ve found it therapeutic to put my thoughts and fears into words and share them with you all. This has been quite an educational seven days. For the first time in my life I grasped the meaning of the term “unconditional love.” The moment I locked eyes with my girls in the delivery room, I turned into a mother lion guarding her cubs. I will do anything to ensure their well being. While I know that there are still numerous hurdles we’ve yet to climb, I’d still be remiss for not thanking everyone following of this blog. Know that if nothing else, you’ve helped me realize how to cope with a situation that I hope none of you ever will have experience and yet, one that has taught me what being a man, husband, father and provider is all about.

Until tomorrow!!!

Moving and Shaking

The girls have had quite a 24 hours.

Braelyn is now home with mom. The hospital pediatrician warned that we need to be diligent on her feedings because at just 4lbs. 2ozs. she can’t afford to lose any more weight. In fact, since she was born she’s lost 6 percent of her body weight. Still, she’s finally transitioned away from meconium to more normal “dirty” diapers and is doing great on nursing with a formula chaser for extra calories. We’ve already got her first regular pediatrician visit on the books for tomorrow. We needed to do it that quickly because her head circumference was in the lowest percentile to allow the hospital to discharge Braelyn. Needless to say, they were pretty blunt about the necessity to be sure she’s getting checked out regularly for the first couple of weeks. But I guess she just debunked that urban legend that babies don’t get discharged from the hospital before they weigh 5 pounds. That might be the case for preemies but since Braelyn was officially a “full term” baby and with everything officially checking out, she was free to go. So fingers crossed that The Peanut can gain some tons and transition into a Walnut!

As for her sister, Gwen has transferred from an incubator to a crib in her room at the hospital. Her head circumference has decreased a half centimeter since the shunt was inserted which is fabulous. After her little feeding issue a couple of days ago, she’s now known to down her milk quickly and cry for more. She even altered her feeding schedule today because she was hunger earlier than her scheduled feeding. The nurse staff has told us that her wound is healing up great and that it doesn’t even require a regular cleaning of the dressing anymore. Instead it’s done on a “as needed” schedule. Let’s continue to hope that she continues her amazing recovery.

Heather is still in a lot of pain but gets better and better each day. Typically, she nurses Braelyn and then while I give The Peanut formula via bottle, Heather pumps for Gwen. Needless to say, it’s been a process but we’re starting to get the hang of it… heck, mom even gave me a feeding off last night so I could catch an extra 40 winks.

We “introduced” our dogs Angel and Joker to Braelyn this morning and that went well. They seemed to understand that she was part of the family but weren’t “in her face” much. Apparently babies do hear in the womb because Braelyn doesn’t wake when the dogs go into a bark session and she’s napping. She just acts like it’s no biggie.

Unfortunately, Nana & Poppa leave tomorrow to visit Braelyn and Gwen’s new cousin Ava in Florida. However, as you can see from the photos, they’ve gotten plenty of quality time with their granddaughters. As for Ava, she’s also quite new to the family. My brother and his wife welcomed her on October 1st and Ava even came home from the hospital with her mom yesterday just like Braelyn.

That’s all for Sunday… Talk to you all later!

Hurry up and wait

Still waiting to hear back from St. Luke's as to when we'll be discharged and if Heather will have her staples removed today or during a follow up visit next week.

Because of that, we haven't seen Gwendolyn yet today as we tie up the lose ends. This juggling act is no fun at all!!! At least we'll be down to one daughter at one hospital by the end of today and hopefully we'll get to see Gwen very soon.

But we just can't wait to get "The Peanut" home this afternoon. As you can see from the photo, she doesn't seem quite as excited as mom and dad are. Oh well, at least we'll have a good blackmail photo to use against her in the future.

;)

Gwen's Midnight Feeding

Just a quick note that Gwen had a successful Midnight feeding this evening. She ate the required amount of milk then blissfully fell asleep with a full tummy. For now, she has averted the insertion of a feeding tube via her nose. Hopefully she'll start keeping pace with her father's appetite and eliminate talk of the feeding tube altogether!   Good night all.

Friday Night @ CMH

First, I want to apologize for the tardiness of today’s entry… it was just one of those busy days and before I knew it, boom… it’s 9 PM and I’m sitting next to Gwen thinking “I still need to update the blog.”

Anyway, the good part of today being “busy” is that it was a productive day. Mom was able to visit Gwen at CMH. That was the first time since the ambulance crew wheeled her into the recovery room shortly after she was born. Gwen seemed to recognize Heather’s voice during the visit which was nice.

Speaking of Mom, her and Braelyn are both still on target to get discharged tomorrow (Sat).

Braelyn (who I’ve begun to call “The Peanut” thanks to her diminutive stature) continues to amaze me. At last check, she weighted only 4lbs, 2ozs and yet she checks out marvelously in the health department. Her wide eyes and inquisitive looks are just precious.

Not to be outdone, Gwendolyn has maintained her positive progress. The fluid draining from the surgery site is down to a trickle at best. With each day, she seems to get more and more strength in her legs. After her Friday afternoon feeding, they bumped her up to 45 CCs of milk.

However, on a sour note, this last feeding Friday night Gwen was a little sleepy and only ate a quarter of the required amount. Hopefully she’ll be more alert and hungry at the Midnight feeding or they will have to put a feeding tube down her nose and into her tummy to be sure she’s getting the proper nutrients. The only other negative I can think of for Gwen is that she kept yanking out her IV, which had been place on her hand, so they’ve had to put the IV plug in her head. However, if she can get back on track with her feedings, it will soon be rendered obsolete anyway.

Well, that’s that from the Castellanos. Below are some more photos of the family. Hope you all are doing well… talk to you tomorrow!!!

Heather gives "The Peanut" a peck

Heather and Gwen at CMH

Braelyn and Daddy

48 hours down… A lifetime to go

Good morning all. Not a lot of “breaking” news from the Castellano camp this morning which is just fine by me.

Gwen is still recovering. We hope to get the okay in a little bit for her to begin getting fed with milk pumped from Heather. She’s in a lot of pain when she’s awake so I don’t get much interaction with her. The only good part about her pain fits is that she’ll kick her legs from time to time. That just keeps reassuring me that she’ll maintain at least a little bit of movement there.

Braelyn continues to do quite well in her own right. She’s nursing on a regular basis and then being supplemented with formula after her feedings via syringe. I got to assist with a couple of those post-nursing formula feedings last night. Braelyn certainly is one hungry girl. The formula helps to get her extra calories that she’ll need to catch-up in size with her “younger” sister.

Heather is healing up well. She showered this morning and seemed in good spirits after getting nice and clean. Save for a grumpy tummy, she seems to be doing just fine.