May 26, 2009

Finally! Updated pictures of the boys!

I was way behind on uploading and organizing photos from the past couple of months. But I finally got around to it. Enjoy!

PS - Aiden is doing great! He STILL has the stitches in each corner of his eye as they have yet to dissolve. But despite it all, he's back to his old self. It's amazing to me that with all he has gone through, his personality is as vibrant as ever!






Our 4th Anniversary

Everyone has been asking me what sweet thing Ricky planned for our anniversary this year. He's known to be quite the romantic and is usually doing something creative for special occasions like this.

Well folks, he lived up to his expectations! He planned a horseback riding adventure at a ranch near French Lick, IN. We dropped the boys off at his parents early in the morning so we could make our 10am ride time (it's over an hour away). There was supposed to be another couple coming along, but they canceled that morning so it was just the two of us (and our guides of course).



It was so beautiful! The Ranch was over 1100 acres of rolling hills, trees, pasture and trails. My horse was "Twillow" and Ricky's was "Ginger". We both did really well - only walking, no trotting was allowed. We had a wonderful time.

Afterwards we had lunch (alone! no kids! gasp!) and headed to the Marriott downtown Louisville to check in to our room. We love this hotel - and we chose it not only because we stayed there the night of our wedding, but because they have great service and very nice, comfortable rooms. (Oh yeah, and also because we can stay for free using our Rewards points).

When I made the reservation over the phone I asked about getting some kind of upgrade. They told me to ask at the desk when we were checking in. So when we arrived, I mentioned the possibility of a complimentary upgrade since we were celebrating our anniversary.

She put us in a beautiful suite and once we were in our room, a tray of chocolate covered strawberries and a bottle of champagne was delivered. Yum! (Along with a hand-written note wishing us a happy anniversary and many blessings in years to come. See, now that's good service!)

We walked to the Bats game, had dinner at Champion's and turned in early. Believe it or not, sleep was a high priority!

It's been a long 4 years for us - but our love has helped us overcome many of the obstacles along the way. God sure did know what he was doing when he brought Ricky and I together! I'm looking forward to many many more anniversaries to come!






May 22, 2009

Scooby dooby doo!

Ricky and I took Ethan to King's Island last Sunday for a special day with just mommy and daddy (we try to do this often since we spend a lot of time caring for and out of town with Aiden). He was so good and truly loved every minute of it. We got there early enough that we rode about half of the rides in Kiddie Land without waiting in a single line. That's the way to do it let me tell you!

Ethan is a very "lovey dovey" type kid - so every time he saw a different life-size character (Dora, Diego, Spongebob, etc.) he would yell "Hug her" or "Hug him"! He'd take off running, and practically tackle them, totally oblivious to the parents who were snapping their child's picture with said character. I'm assuming they preferred to have just their child in the picture...but alas there are tons of families out there that now have shots of their adorable kids with Dora...and my sweet little Ethan squealing with excitement in the background. Sorry :)

Anyway - here is a cute one of E with Scooby. We ended up shelling out an exorbitant amount of money for it (I will never forget our camera again)! But we couldn't pass it up.


PS - lots more updates on Aiden, including pictures, coming soon!






May 13, 2009

Getting caught up

I've already written about the Gorman's and how much they've done for us during our trips to Dallas, but I haven't had the chance to post the pictures from our get together at their house. It was an awesome day for us - they welcomed us into their home where we were able to hang out and relax a few days before Aiden's cranial surgery. I've said this a million times, but each time I'm with them I feel I have to say it again...we've only met each other a couple of times, but our time spent together is so effortless that it feels like we've known them for years.


First, we just let the kiddos crawl around while we took pics. Then Tate made margaritas for the ladies (yay!) and we decided what to order for dinner. While we fed the kids, the boys went to pick up our take-out (I decided Mexican). John reminded me so much of Ethan as he began discarding his unwanted food onto the floor much to April's dismay. And Rory Cate wriggling in her highchair as April cleaned up John's mess again brought that familiar feel of home. There was no pressure of trying to keep the dinner table clean like if you're at a kid-less friend's house. It was all very natural. Comfortable.

They gave their kids a bath, got them in their jammies and settled them in bed. There was no rush - we know the routine well. And although it was probably very monotonous for them, it was then that we started to remember why we were there and began to wish for our own monotonous routine at home once again.

April set up their pack n' play for Aiden and we changed him into his jammies as well, laying him down with heavy eyes. For the next hour or so we were able to eat our dinner and get to know each other better. When Aiden started to stir, we headed back to the hotel for the night.

With Aiden's surgeries out of the way, I truly can't wait to head back to Dallas in June. Fingers are crossed that Ethan is well this time around and we can get together as planned for a "rain check" with April, Tate, John and Rory Cate. I know that we have great friends in this family and I look forward to many more get-togethers with them in the future!

During our trip, we were also lucky enough to meet up with the Hurd family from Shreveport, LA. Anne and Sean have a son, also Aiden, with Apert syndrome. Their Aiden is almost 10 months old and had recently gone through the cranial surgery that our Aiden just had. We've been in touch through the Apert listserv and following eachothers websites so it was nice to finally meet them in person. It is amazing what the internet can do to bring people together!

I can't say enough how absolutely adorable their little boy is. He is living proof of how well these kids bounce back from major surgeries - crawling around like crazy, happy as can be. And his parents are also a testament to how strong couple's can, and do, become through the tough times. Nobody asks for this journey. We don't know about it in advance. But it is the ones that choose to embrace it and give it everything they have that truly inspire others to do the same.

Thanks for meeting with us Hurd's! I hope we stay in touch!

Finally, the boys are both doing great. Aiden's eyes continue to open gradually. We are finally starting to see what he is going to look like as the swelling goes down. It is still hard to gauge at this point because Aiden's big beautiful blue eyes aren't like they normally are, but I'm coming to terms with the differences in the shape of his head/forehead. Seeing his personality emerge through the brusied skin only highlights how strong he is and how much I love him!

Ethan has been so sweet and gentle with his little brother the past few days. It makes me hope that we are actually doing a good job raising him to be a smart, compassionate human being. There is nothing I love more about being a mom than him running up to me in the middle of the day and for no apparent reason throwing his arms around my legs saying "I love mommy". It reaffirms this whole motherhood thing ten fold.

And as if we haven't taken on enough in the past few months, I'm going to add another huge task to my list. A good friend of mine from college (and old roommate), Anna, has offered to help put together an event to raise money and awareness for Apert syndrome. We've started to gather ideas and are hoping to organize a silent auction/dinner type event to benefit the Children's Craniofacial Association. We already have a lot to work with - so I'll keep everyone posted as we develop this further. I'm counting on my friends and family to participate!

Other than that things should be relatively calm with the Skees family in the coming weeks. (Aside from me starting a new job, several family/friends weddings, Ricky picking up more responsibility at work and STILL trying to sell our house). But hey, we're used to it by now!






May 12, 2009

I see you peekin'

Sorry for the delay in updates - yes, we are home sweet home. Our trip back from Dallas was uneventful. Thank goodness.

We got a few looks and stares at the airport as we had expected, but I'm guessing most people could tell that he must've just had some kind of surgery (you know, rather than thinking that we beat our child or something). We tried to avoid having to wake him up and take him out of his carseat to go through security - pulling the whole "look, he just had major head surgery..." but thanks to the 9-11 terrorists, the supervisor just shrugged and said "sorry, he's got to come out of there".

When we got in to CVG, Nana and Ethan met us at the airport. We were so happy to see him feeling better and back to his normal high-energy self. And from the speed of his little legs pumping to run towards us at baggage claim, I could tell that he missed us too.

Ricky's friend Jason is about to be married in June and was having his bachelor party in Cincy that night. So we went straight from the airport to drop Ricky off downtown to meet up with his friends. He deserved the night out after the long and stressful week.

We celebrated Mother's Day on Sunday with my family then headed back home in the evening. My boys gave me custom made plates that they drew on with permanent markers. Soooo cute. And some flowers. Ricky gave me a certificate for a pedicure.

As for how Aiden is doing - his swelling is going down by the minute. His eyes started opening on Monday morning...ever so slightly. When we went in to get him out of bed they were just open a little sliver. Now, Tuesday evening, both are open about halfway, but the stitch in the outside corner is keeping them from fully opening. As soon as the stitch dissolves, they will open all the way.

Despite not being able to see normally, Aiden is back to his happy-go-lucky self. He's crawling all over and as smily as could be. Have I ever mentioned how amazing he is? :)

Ethan is aware of Aiden's "boo-boos" and the need to be extra careful with him. He loves his little brother so much and can't wait to start pushing him over or laying on top of him to smother him with hugs again.

So now, with Aiden's surgeries over for at least a few years, we're focusing our energy on selling our house and enjoying the nice spring weather as much as we can.

I want to thank everyone once again for the thoughts and prayers throughout last week. We're so thankful for the support we have from friends and family.

I have so many more pictures to upload - including our visit with the Gorman's, meeting the Hurd's, and Aiden's unswelling progress - so check back soon!






May 08, 2009

Out of the hospital!


Yay - we are all back to the hotel, but not after making a true Skees "always complicated" exit.

The nurses helped us wash Aiden's big ol' noggin to get the incision site really clean. Of course he was not a happy camper through that whole event. He was tired, hungry, unable to get his bearings with his giganto head and just plain unhappy. After the quick head bath, we dressed him and let him drink his milk before we strapped him into the stroller.

He INHALED his milk. Probably not a good idea to let him drink so much in hindsight.

Anyway, we were very anxious to get the heck out of there so once in his stroller, off we went. We were so close to smelling fresh air - made it down the elevator and almost to the exit when up came the milk...and then some.

We screeched to a halt and turned back around. Back upstairs to our newly vacant room we went. Round 2. Stripped him down, wiped him off, Cloroxed the smelly carseat and headed back out before someone could make us stay.

We're all very comfortably resting now. Ricky is feeling better. I haven't gotten hit with it yet (now taking Tamiflu to prevent it). And Aiden is visibly more comfortable on the cushy hotel bed than he was in the hospital attached to 18 different wires from various veins in his body.

Only thing is, with his eyes swollen shut it's hard to tell when he is awake and when he is asleep! :)






May 07, 2009

More swelling

If that is even possible. How much more can his tiny face take? It is hard to see my baby boy like this, but he has been very peaceful and content. How I'm not sure - can you imaging going through this yourself??? I know I would be ANGRY!

April came to visit Aiden today and brought him a balloon (and a little Cookie Monster for Ethan). It was nice to have a friendly face here - especially one that has been through this exact same surgery about a year ago. She kept telling me how good Aiden looks. I had to laugh and just say that I'd take her word for it since she has seen her own son in this same situation. Because looking at him, I'd never imagine to say/think he looks good!

Ricky is back at the hotel resting right now. It seems he's picked up a bit of a bug as well. I'm hoping I can stay well for our trip home.

I posted some more pics - but beware - what you see does not even look like Aiden as you know him. As difficult as it might be to see him this way, please know that it is all very normal post-op swelling. It will peak tonight and then start to decrease as the days go on. However it could be several weeks until all of the swelling and retained fluid is completely gone.






My poor Aiden looks like a gremlin

We knew that he would be a lot more swollen than when we last saw him yesterday (more on that below), but it was quite shocking to see the transformation. His poor head is stretched like a balloon that looks like it is about to burst. His expanded skin is smooth and shiny. His eyes are beginning to bruise. It looks as if he got into a fight...and lost...big time.

Yesterday afternoon, Dr. Fearon came by to see Aiden. He suggested that Ricky and I take the night off to go have dinner, a glass of wine and to get a good night's sleep saying that while Aiden is in the PICU, he's got the best babysitters he'll ever have. Without his mentioning it, we probably never would have done it - our plan was for Ricky to stay with Aiden since I had the night before - but we decided that we must've looked like we needed the rest. So we did just that. (Although we probably annoyed the nurses by calling in to check on him as often as we did!)

Feeling refreshed, we got dressed, ate some breakfast and headed back to the hospital. He's snoozing right now, but he has been doing very well overall. He's drinking milk again and I'm going to try to get him to eat some solids - I just ordered him some yogurt and mashed potatoes to see if he wants something hot or something cold. His oxygen levels are holding steady at around 98-100 on room air so that is excellent! His pain level doesn't seem high and it is being managed with regular Tylenol so far. He is a trooper!

We should be moving to the regular floor as soon as they have a room available for him. Then, if all continues on this track, the plan is still for Aiden to be discharged tomorrow after Dr. Fearon comes by to see him. Our flight is on Saturday, so we'll have one night with him at the hotel before heading back to my parents house.

Thanks again for all of the good vibes being sent our way - they're working!






May 06, 2009

Little Fire

My little man Aiden amazes us more and more each day. He pulled through his surgery with flying colors despite his current illness and our complete despair over whether or not to send him into surgery in the first place.

Dr. Fearon and Dr. Sacco met us in the waiting room and discussed how the procedure went. Overall, they said it went without a hitch. He went under anesthesia just fine. He didn't lose an abnormal amount of blood which meant no need for a blood transfusion at this point - and as long as his body "reproduces" the blood it lost in the next few hours, there will be no need for one during his recovery. He did have an episode of wheezing during surgery, however the anethesiologist was able to remedy the situation with a quick albuterol treatment to open his airways.

We were quite relieved to hear that it all went so well - but still quite anxious to see our little guy as we waited to be called back after they settled him into his room.

Finally, and admittedly less terrified than I thought I would be, we got to see the miraculous change that came with this surgery. Although Aiden was very puffy from post-op swelling, it was not as difficult seeing him as I had anticipated. He does look different. It will be a more noticeable change for most until all of the swelling subsides. But even after that, the physical differences will not go unnoticed by us, his parents. At first I thought it would be hard for me to come to terms with what I would be seeing. I guess I have been once again blessed with the strength to focus on what is most important - Aiden needed this surgery. Period.

Dr. Fearon did say that once the incision was made from ear to ear and the skin was pulled down to expose the dura (the thin layer covering the brain), it was very apparent that his brain needed the extra room. It was growing quite tight in the space surrounding the closed suture. A great weight was lifted off of our shoulders when we heard this. Doing this surgery now was one of the best decisions we ever made.

Aiden is one tough cookie. As I watched him laying in his bed with swollen cheeks and puffy little eyes I decided that his name was the perfect fit. You see, the name Aiden means "Little Fire". The comparisons go beyond his red-tinged hair. He is a fighter and despite all that he has endured, his bright disposition has been proven difficult to extinguish. His light burns bright. His smile spreads rapidly and melts your heart. I can only hope that Aiden will continue to be a spark of inspiration for the many people who are lucky enough to know him.

Click on the below links for more pictures from the past two days:






Surgery update

Things are moving right along with Aiden's surgery. They started the operation around 9am and we have been calling the OR frequently for updates.

I know I've mentioned it in older posts from previous visits to Dallas, but the waiting room here at Medical City is equipped with a pretty cool patient update system that lets you track surgery progress on a large flat screen television. It lists each of the patients names (using only certain initials for privacy), and indicates what portion of the surgery/recovery they are in and at what time it began. Once it shows that they are in the OR, a scalpel appears when the first incision has been made. That changes to a stitch pattern and finally a bandaid just before they are moved to recovery.

All of Dr. Fearon's patients are also given a direct number to call the OR at any time throughout the procedure and as many times as we want . One of his nurse's answers the calls and gives us real-time updates.

So far so good - Aiden is doing just wonderfully and the surgery is going well. Should be another 2 hours before it is complete.






Aiden is in surgery

Despite having to be on oxygen all night long, Aiden slept really well. We moved to the surgery holding area bright and early in the morning and awaited evaluation from the anesthesiologist, Dr. Blakely. She listened to his chest, watched his oxygen levels and determined that although conditions were not optimal for surgery, based on those factors, she felt that moving forward was alright. More importantly she said that having 4 children herself, if she were in our shoes, she would go ahead with it.

After lots of praying, hugs, kisses, tears and holding on to him tight, we let our baby go. I know he is in good hands - and that God will bless the hands of the doctors that are caring for him. I know life is never black and white. I know that no matter what the situation was with Aiden's health, sick or well, there are always risks involved with any surgery. I know all that. But hearing the words "possible lung failure" and "severe respiratory distress" due to complications from his bronchitis during surgery didn't make it a very easy pill to swallow. And it definitely didn't make letting go of his soft sweet skin any more bearable.

It is now 8:35 in Dallas (central time) and Dr. Trone (ENT) just came out and said that his portion went smoothly - Aiden had tubes placed in his ears first and then they will begin the cranial vault. He told us that he went under fine and without complication. No wheezing. Breathing fine. Good news.

Ricky and I are going to grab breakfast and then set up shop back up here in the waiting area for the remainder of the surgery. We have been told the surgery should last about 4 hours, give or take. I'll update later.






May 05, 2009

It's gonna be a looooong night

I'm not sure this day could have gotten any worse. The only thing that even validates the hell we've been through today is the fact that I can look over at my sweet little boy as he snuggles into his blankie and flashes me a smile through the bars of his hospital crib.

Yep, that's right, I said hospital crib. If you read my earlier post that laid out the itinerary of events for this week, you would know that a hospital stay on Tuesday night was not on the agenda. Plans change. And boy oh boy it's frustrating.

Aiden started getting the sniffles on Sunday evening, the night before our flight to Dallas. We phoned Dr. Fearon to mention it to him and see if he was concerned at all and whether or not a cold would effect the chances for surgery to take place as scheduled. He said it shouldn't be an issue. We were reassured.

It seemed that his case of the sniffles had morphed into something more the second the plane skid into the gate. A little coughing here and there. Drippy nose. Was it allergies? Change in weather/enviorment making his cold act up? If only.

His cough picked up throughout the day on Monday - but we still convinced ourselves that it was nothing major. I'll go ahead and tell you it was NOT the ever-dreaded Swine Flu...er, I mean sorry, the H1N1 virus...instead, it is bronchitis.

I'll spare you all of the details that made the next few hours JUST PLAIN MISERABLE, but will tell you it involved each and every one of the following (not necessarily in this order): language barriers with doctors and/or nurses, miscommunication all around, poor little Aiden getting poked not once, not twice, not even three times, but FOUR times to draw blood because of a nurse and laboratory staff error, IV coming undone, blood all over the floor, and dropping oxygen levels.

Long story short, Aiden is now on oxygen, FINALLY sleeping like a baby despite vitals being checked every hour and respiratory therapists coming in to administer breathing treatments every two hours.

The remaining doctor visits that were scheduled as part of our pre-op appointments were done in the hospital room earlier this afternoon. Dr. Fearon (the craniofacial surgeon), Dr. Sacco (the neurosurgeon), and Dr. Trone (the ENT) came to the room for their consults. They all seemed pleased with how Aiden looked. However the consensus is that the decision on whether to proceed with surgery will be made first thing in the morning based on how he does tonight. As nervous as I am about this surgery, I really want to have it done tomorrow rather than be sent all the way home only to have to return for surgery at a later date to be determined (and to again anxiously await it and re-prepare myself for it a second time).

Please say some extra prayers that this all works out and Aiden is healthy enough to move forward with surgery as planned.

I will update when I know more tomorrow.






May 04, 2009

Everything's bigger in Texas!

We've arrived in Dallas without any troubles at all...and without two of our passengers too! Turns out Ricky and I had to make an executive decision for Ethan to stay behind at Nana's house (which meant Nana stayed behind too), because on Sunday he was running another fever and ended up throwing up later in the afternoon. We were all extremely bummed.

It was so very hard to leave my little guy (and my mom, my best friend) behind. We were so looking forward to marking this surgery, one of Aiden's last for several years, with a "family" trip to actually enjoy some of the sites of the Dallas area rather than just seeing the bland, stifling walls of the hospital the entire time.


And one of the other main reasons we had wanted to bring Ethan along this time was because we had planned on having a "play date" with our friends, the Gorman's, and their two kiddos John and Rory Cate. John is Ethan's age and I'm sure they will be fast friends...when (and if) they finally get to meet!

Speaking of the Gorman's, they have really outdone themselves this time. They have single-handedly given truth to the phrase "Everything is bigger in Texas" - especially when it comes to hearts. Not only did they graciously allow us to use their car again, leaving it at the airport for us to pick up when we arrived, they, along with some of their dear friends, pulled together a GIGANTIC amount of goodies for our stay. Our countertop and fridge are full of snacks and drinks for both Aiden (Crunchies, crackers, juice) and Ricky and me (homemade cookies, chips, fruit...beer/wine).

And in addition to things that will fill our tummies, they also included toys and books to help pass the time, and lovely notes letting us know that half of Texas was thinking of us! We feel very "at home" surrounded by it all.

A Texas-sized "Thank-You" to all of the awesome families that helped to make our stay a little brighter!

++++++++++++++++++++++++++++++++++++++++++++++++++++

The week's schedule is as follows:

Monday - arrive in Dallas, dinner with the Gorman's

Tuesday - pre-operative appointments throughout the morning and afternoon, then relax at the hotel in preparation for our early wake-up call

Wednesday - be at the hospital by 6am, surgery scheduled for 7:30am (will last approximately 5-6 hours), spend night in the PICU during recovery

Thursday - hopefully be moved to regular pediatric floor for the night

Friday - possibly discharged, but may stay one more night for monitoring

Saturday - fly back to NKY

Sunday - spend Mother's Day with my family before heading back home

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++

We also want to let everyone know that the emails, comments, cards, texts, messages and mail that we've received these past few days means more to us than you can imagine. Your encouraging words, thoughts and prayers really help lift our spirits and help us to keep a positive attitude. We appreciate each and every one of you - friend, family or stranger!

Please check back throughout the week (and several times on Wednesday I'm sure) for updates. I'm off to try and get a little nap while Aiden snoozes too!

Love, The Skees






Related Posts Plugin for WordPress, Blogger...

  © Blogger template 'Solitude' by Ourblogtemplates.com 2008

Back to TOP