April 30, 2012

* VLOG * Aiden's Head Surgery: Day 2 - Pre-Op Appointments

Today was a very busy day - one appointment after another from 9:30 am to 5:00 pm. We were able to meet up with April, her mom and her sweet new baby girl Greta for a quick lunch. Holding that little peanut and seeing how cute Aiden was with her makes me even more excited for Hudson to get here in August!

Aiden is asleep next to me as I type this. I keep running my hand over his head - feeling the shape of it under my palm. It's hard for me to wrap my mind around the fact that in less than 12 hours that will all feel different forever. There are some things that we are looking forward to having "fixed" - like the fact that his left brow bone has been lower than his right since the last craniotomy and all the lumps across his forehead that need to be "smoothed" out.

But those bumps, the uneven brow, the big sparkly eyes...that is my Aiden. I'm apprehensive about changing my boys features to say the least.

All in all, I'm trying to remain positive. We know this surgery is necessary - critical, in fact - to allowing his brain the room to grow unrestricted and keeping him developmentally on track. Dr. Fearon says he is one of the smartest kiddos he sees and while we attribute that to having proper medical treatment from day 1, he gave us a little pat on the back by saying that some of his research points to the home-environment playing a key role in the cognitive development of kids with Apert Syndrome.

So with that, I will just breathe. And I will trust in the fact that we are doing and will continue to do everything in our power to keep him strong and healthy. The cuteness, well, that's just part of who he is and nothing can take that away!

Here is a video from earlier this evening - featuring the star of the show this week...AIDEN!!!



PS - We found out today that his sleep study was completely normal...no apneas!!! Thanks again for everyone's continued prayers!






April 29, 2012

* VLOG * Aiden's Head Surgery: Day 1 - Arriving in Dallas

Just in case I don't have enough time for writing detailed blog posts, I thought I'd try to document this week in a series of video blogs (aka, "vlogs"). Please excuse the fact that I may be in sweats or without makeup most of the time...and remember, I'm preggo so "the camera adds 10 pounds" adage may actually be more like "20" in my case :) Anyway, enjoy!







On the road again...

Today we headed to Dallas for Aiden's 2nd cranial vault surgery. (His first one was 3 years ago at 15 months old.)




Although I have been extremely anxious in the weeks leading up to this trip, I have recently had a sense of calm come over me.

Maybe it's because my mom flew in from Kentucky to help out with things. We've been joking that with my pregnancy brain and her "advanced age" (is that PC enough?) - our 2 brains work together to make 1 great team :) Having her with me for the past few days has been a huge blessing. No matter how old I get, I still need my mom!

Or perhaps the calmness comes from seeing the joy on Aiden's face as he opens a new package or card or I read him the messages from Facebook and email. All of the many ways people have sent their love are definitely being felt and appreciated!

Many many thanks to:

  • Joy and Brogan who sent a cookie bouquet from Chicago
  • my sister who sent goodies from her family in Kentucky - including the most ADORABLE recordable story-book read by my 6-year-old niece Lilly and card with voice message from 4-year-old Avery
  • nephews Andy and Ben for their super cute drawings for Aiden
  • one of Ricky's co-workers at Samtec for a box of all kinds of toys, books and games to help Aiden smile (thanks Will!)
  • Ethan, who took it upon himself to make a card and ask everyone in his class to sign it for his brother
  • all the classes at St. Joe's in Downers Grove, IL (where my aunt Cakie works) who sent an entire box of handmade cards with well-wishes for Aiden...they are sooooo cute!
  • my in-laws for sending oodles of gifts for the boys from Indiana
  • my mom for taking care of Ethan while we are gone, for finding the perfect front-zip pj's for Aiden so we don't have to put things over his head post-surgery, and all the things she's gotten them since she's been here (or mailed from Kentucky because they wouldn't fit in her suitcase!)
And of course, to all the people who continue to cover Aiden and our family in prayers this week! We are so very grateful!






April 23, 2012

Just the way you are

Dear Aiden ~


In one week you will have yet another surgery.

After the first 2 years of one after another, I naively thought that the ones that lay ahead - when you would be older and I could explain things - would bruise my heart less. 

I stand corrected.

I wish I could trade places with you. I wish I could make all your medical issues go away. I wish you could enjoy childhood the way so many others get to - without doctors and hospitals and surgeries.

Today you surprised me by sharing a moment of self-awareness that broke my heart just a bit. As I was preparing your dinner, you watched my hand intently as it rested on the counter next to the stove.

"Why does my hand not lay flat like yours, mommy?" 

You put your hand next to mine in comparison - the curves and rigidness of the amazing hands created by God and re-created by doctors were brought to light in a way that had become so commonplace in my life. Yet, at 4 years old, you are just starting to notice. Just starting to care.

This moment caught me off guard. I instinctively spouted out the response from the top of my mind, the one that is always ready: "That's how God made you sweet-pea. Your hands are special. They are just fine. I love your hands".

That is true, no doubt. But, my dear Aiden, I want you to know that sometimes I want to let my heart respond instead. If I did, I'd shout "It's not fair, is it Aiden? I'm so sorry sweet boy."

I so hope that one day you will learn to love your differences the way I do. To understand that the unnatural curves of your fingers and the wideness and asymmetrical lines of your face make you YOU. 

But also know that it is okay to be angry sometimes and NOT like being different and to yell and scream and wish it away. I will be here for you in those moments to lift you up. To remind you that so many people love you and have been inspired by you. That your mommy and daddy love YOU more than anything in this world.

Just 
the
way
you
are.

In the meantime, I'm still learning the right words to say. I'm fumbling a bit as I figure out this new part of our journey where holding you and drying your tears will no longer cut it. You are going to want answers. This time, you will need to know "why". 

I wish I could tell you why, sweet boy, I do. But I can't.

What I can do is tell you how we will get through this and all the challenges ahead. 

With love. Because love? That comes easy and will never falter.

I love you baby. Be strong,
Mommy






April 20, 2012

One day closer

Each day that goes by I grow more and more anxious about Aiden's upcoming surgery. I'm not sure if it's the pregnancy hormones that are making me increasingly emotional - or simply the fact that in a little over a week another human being will cut into my baby's head. Someone who will be solely responsible for fixing what needs to be fixed in order to ensure my child's brain will continue to grow uninhibited by his own skull.

And this human being is capable of mistakes.

I don't doubt his abilities. I simply understand that things can and do go wrong. Every time I hand over my child I am letting medical professionals pump his tiny body full of drugs so that their work can be done without my son feeling any pain. Then, they remove and manipulate pieces of his head and face as he lay there helpless on the table. When I start to think of just how much trust I have to put in another individual - that my baby's life is not in my control for those few hours - it is so very anxiety-inducing.

I cannot protect him. I can only have faith in the decisions I've made on his behalf to find the best team of doctors to take on that burden.

Aiden didn't ask for Apert Syndrome. All of the surgeries and medical intervention he will require throughout his life? It just doesn't seem fair. If I can't make sense of it in my own head, how I am going to be strong enough to help him understand?

I pray those answers come to me with time and faith in God.

I wish I could fast-forward through the next few weeks - to know the surgery was necessary and successful, to know that he will return home safe and that he will begin to heal.

And to know that I will make it through this too.

For now, I can only focus on being there for him through this next step in his journey. So that is what I will try my very best to do.






April 16, 2012

Operation "Spring Cleaning" 2012

In addition to being pregnant and having that natural urge to get things organized, I took a look around my house a few weeks ago and had an overwhelming feeling of "UGH". You see, we keep our house "tidy". We pick up the toys at the end of the night (most of the time), we clean up spills in the kitchen and do just enough laundry to keep the hampers from overflowing. But every so often that just doesn't cut it. I need CLEAN. The kind of clean that you learn from your mama but spend your entire life avoiding...until you become a mom yourself. And then you get it.

So, I sat down on the couch and opened my laptop to create a cleaning list for each and every room. My husband thinks this is counter-productive. He's of the "why don't you just start cleaning instead of wasting time making a list about cleaning" camp. I, however, need to feel focused and organized in order to get started - and a list helps me do just that.

My list hangs proudly on the refrigerator just waiting to have the little boxes checked off. Although I've only made it through the first page, seeing the list every day makes me smile and reminds me that I'm just 10 more pages from having a deep-cleaned, organized and put-together house. Which, I do realize that by the time the last box is checked it will probably be time to start back at the first page and work my through it once again. But at least I will be able to see the potential for clean room-by-room if not all at once.

And tonight - I will be sharing my Home Organizing Checklist with you...don't be too excited! ;)

Whether you are pregnant and "nesting" or simply want some inspiration to jump-start your spring cleaning, click on the image below to download your very own customizable Home Organizing Checklist: Room by Room template courtesy of More Skees Please!

[The document will open in Google Docs. Click on "File" then choose "Download" from the dropdown menu. Save the file to your computer and customize it for your needs!]

Home Organization

I'd love to hear how you get yourself prepared for a good deep cleaning of your home. Feel free to leave a comment -- are you a list-maker or a dig-right in and get cleaning type?






April 13, 2012

On my mind

We've known since early March that Aiden would be needing his next head surgery. Actually, we've known since the moment we sat across from the craniofacial specialist 4 years ago what the "plan of treatment" included. We've been through 5 previous surgeries. Yet it still doesn't get any easier.

On May 1st, Aiden will have what is called a frontal orbital advancement. This will be the second time he's undergone this procedure, and unfortunately not the last.

They will take him from my arms, whisk him off to the OR, and make a wavy incision from his left ear across the top of his head over to his right ear. They will pull the skin down from the head to the top of the brow bone, exposing his skull. They will cut a section of the skull loose to correct the shape and expand the area allowing more room for his brain to grow - something that occurs naturally in kids without Aiden's condition. The bone will then be replaced and the skin sewn back together at the seams. And when I am reunited with him he will no longer look like the boy I handed over to trusting hands just a few hours before.

This photo shows the bone segments that are removed
during a frontal orbital advancement (photo credit: Wikipedia)

While you look at your typically developing kids day in and day out you barely notice the changes to the shape of their head, the lines of their face. Over time, you'll look through photos and marvel at how different your child looks from the year before. "Can you believe how much little Johnny has changed from preschool to Kindergarten?" you'll mention in passing to your spouse.

Now imagine witnessing those changes happen in a span of a few short hours. I do believe that is the hardest part. With this surgery, the transformation is so abrupt that it's a jar to your senses. I know it's still Aiden. I know all the physical change does not take away the spirit and personality that thrives in the little boy I love so much. But it still makes me sad.

Photo progression from Aiden's 1st skull surgery and recovery in 2009


In addition, I obviously worry about the procedure itself. The last time he had this done, at 15 months old, the neurosurgeon and craniofacial surgeon met us in the waiting area afterwards and shared with us that the necessity was evident when they began cutting the skull. They said when the bones were released, the dura (the layer around the brain) actually expanded right before them. Had we waited any longer the potential for complications from the brain pushing into the skull would have increased. The visual still hasn't left me to this day.

We are fully confident Aiden will be in trusted hands - with doctors and at a facility that specializes in treatment of kids with Apert Syndrome. But the thought of them slicing open his head enough to be able to actually see his brain doesn't sit well on this momma's heart. There are risks. I work really hard to keep my mind from straying in the direction of what-if's. However it is sometimes unavoidable.

Now that the boys are older, the preparation for this surgery will be different than before. Ethan will understand what is going on. Aiden will know. And we will need to figure out a way to delicately explain the why's. I worry how they will process the information and what emotional effect it will have on them.

My mom is flying in to care for Ethan while we are gone. She arrives on the 25th and Ricky, Aiden and I will leave for Dallas on the 29th. His pre-op appointments are on Monday, the 30th, surgery is first thing Tuesday morning. He will spend 1 night in the PICU and 1 night on the regular floor before being discharged. We are then required to remain in the Dallas area for 2 nights so we can be close to the hospital if any complications should arise. We will once again be staying at the Ronald McDonald House - I just know this will lift Aiden's spirits as he so loves being there. If all goes as planned, we will return home on Saturday, May 5th.

As you can see, we've got a lot on our plates and a lot on our mind. While we may talk openly about things and seem as if we have it all together, behind the scenes our hearts are heavy. We are scared. We are worried. Sure, we will once again muster up the strength from a place inside we didn't know we had, but we definitely appreciate everyone's support. Your prayers are important. As are your thoughtful words and the uplifting ways you let Aiden know he is special and loved.






April 12, 2012

I'm surprised to say this but...

I am LOVING being pregnant!

I'll be honest - after the first 10 weeks where I had a stomach virus, on top of morning sickness on top of all the worrying about whether or not I'd miscarry, I was constantly second guessing our choice to have another child. I was lucky to avoid feeling that way when I was pregnant with Ethan and Aiden. Even so, I was never one to "love" being "with child". It was an ends to a mean and I was just ecstatic to be adding to our family.

At 22 weeks along I do have my fair share of pregnancy complaints but lately they've been less and less bothersome. Sure I'm emotional. And tired. And my growing belly is becoming increasingly uncomfortable. And a handful of other things that I will spare you from reading here. But every night I go to bed thinking just how amazing it is that I am growing a human being. Inside me!

Maybe it's knowing this is *probably* my last time being pregnant (I say that because I've been half-jokingly suggesting perhaps an eensy weensy part of me wants a 4th...). Or perhaps I'm simply basking in the 2nd trimester energy kick. Either way, I'll take it.

We have not yet started putting the nursery together. The reason for the procrastination isn't for lacking desire. It's actually kind of a funny story. Ever since we found out this baby is a boy, my mom has been convinced they are wrong. And while I have no doubt this is Hudson in my tummy, I have been hesitant to sell the baby girl bedding until I get one more confirmation. You know, to put my mom's mind at ease :)

We first got a peek at the baby's gender at my 12 week appointment with my high risk doctor. There was some disagreement between the ultrasound tech (who was quite sure it was a boy) and the doctor (who believed it still may be too early to tell). So we didn't make any announcements just yet.

At 16 weeks, we went back, eager to get another look. Baby was not very cooperative - the doctor spent 10 minutes trying to get *him* to stay still enough and in the right position. Once she did, she said it was difficult to tell because the cord was between the baby's legs. For a brief moment, she believes the cord moved and what we saw was boy parts. I felt confident in what I saw so we finally told our friends and family. We picked the name. And we began calling the baby by it's name.

At my 18 week appointment with my regular OB, I had an ultrasound just to check for baby's heartbeat and growth. Even though I am still very confident that this baby is a boy, my mom had gotten into my head (and then my sister also said she had a dream I had a girl), so I asked if we could take a quick look at "the goods" before I went painting the nursery.

Dr. B said "If Dr. S says it is a boy, I'm guessing she is right" as he swirled the wand on my tummy and searched the screen. He got a quick view between the legs and I must have looked shocked because from what I saw, it looked as if there was a certain something not there. At that moment, he turned the screen away from me and squinted for about 30 seconds before turning it back to me. "Look, the baby's legs are now crossed at the ankles. We won't be able to get a good look," he said.

I sensed he was a bit relieved - like he didn't want to have to speculate on whether what we already had been told was in fact true or not. So, naturally, now I'm beginning to wonder a little too. I know, silly right?

My next appointment is this coming Wednesday, but it's with another doctor at my OB office (not Dr. B) so I'm not sure yet if I will be getting another ultrasound. If I do, I hope to put this all to rest. If not, I'll have to wait until the end of the month when, ironically, my mom will be in town and coming to my high risk appointment with me.

Last night I had a dream about that very appointment. We walked in, had the ultrasound screen in front of us and to my surprise found out Hudson was not going to be a boy, but indeed a girl. Then on Facebook today, an acquaintance from high school shared this very news - pregnant with what she thought was a boy, the doctors in fact determined it was not a boy, but a girl.

So - wow! - it does happen. I guess we shall wait and see!!!






April 10, 2012

Lip Service

Just a quick post to give some love to my sponsor, Kate Ross with Perfectly Posh.

I swear the products really are swoon-worthy, especially for the pregnant mama! One of the biggest differences about pregnancy for me is the fact that I have to sleep with a huge jug of water next to my bed and slather on lip-balm before I hit the sack. Not sure why, but my mouth gets dry and I, or perhaps rather baby, gets thirsty.

The LipShot Balm in Raspberry Bang-Bang has become my go-to choice for keeping my lips soft and smooth all night long (and to avoid waking with them cracked and dry).

And if I didn't have a tendency to lose chap-sticks every other day (and then find them in various car door compartments, pants pockets, or the dryer...) I would probably stick it in my purse to make sure I had it with me at all times. Instead it stays in my bedside drawer so I know it is there each and every night. Guess my next option is to purchase extras in every flavor!

But don't take my word for it - see for yourself! Visit Kate's personalized webpage to order your very own LipShot Balm today! And while you're there, check out all of the awesome products from Perfectly Posh!






April 09, 2012

Recovery Mode?

It has been an exhausting 2 weeks. For the past few months I've been working with the amazing staff at the Ronald McDonald House here in Austin planning this year's Bandana Ball - one of the area's premier non-profit fundraisers. As auction chair, I had the responsibility of putting together the silent, live and "Big Board" auctions. Of course I had a committee helping me along the way, but I have to admit that the closer the event drew near, and the more pregnant I was, the more anxious I became about being able to give it my all.

On the big day I was 20 weeks along - and honestly, feeling better than I've felt the entire pregnancy so that was a plus. However, no matter how much energy I have during the day, the problem is I still crash hard at night from exhaustion.

For 2 days before the event I was going non-stop. I tried to keep from thinking about all I had to do and just focus on getting through each day. Besides, I had a hotel stay with my hubby and a solo trip back to NKY to visit my family to look forward to once the event was said and done. So I kept trucking along.

By the end of the auction the "fun" was just beginning - people were ready to drink and dance - but all I wanted to do was kick off my boots (literally) and go to bed. My feet, my back, my achy and heavy belly...every part of my body was in pain.

But it was over.

There was so much satisfaction in seeing the Bandana Ball come together the way it did. It has always been an amazing event, no doubt, but being a part of it as the auction chair made it extra special. I'm sure I made some rookie mistakes along the way, but I hope that I can say that all the time and effort I put into it helped make it a success. The event brought in a record amount of just over $410,000!

My trip back to NKY was great despite the mid-western air wrecking havoc on my sinuses the moment I deplaned. I got some QT with my parents (surprised my mom, who had NO IDEA I was coming home!), hung out with my sister and her adorable girls during their spring break, did a little shopping and had 4 nights of uninterrupted sleep. It was lovely.

The day after I returned however, was not. I woke up with heartburn around 11pm on Friday (no shocker there), popped 2 Tums and attempted to fall back asleep. Only instead I flung out of bed a few minutes later  with the start of an awful 2 day stomach bug. On Saturday morning my mouth was so dry that I worried about dehydration affecting the baby so I headed to the hospital. They pumped me up with 2 bags of IV fluids and some anti-nausea meds, monitoring baby the whole time. Luckily everything was good and after a couple hours I was on my way home with strict orders to get in bed and stay there the entire weekend.

Normally that would sound amazing, but being Easter weekend I was really bummed. We had just gotten the boys their super cute Easter outfits and I LOVE shopping for and putting together their baskets. We hadn't even had a chance to take them for their picture with the bunny yet and now I would have to miss that too.

I don't know if it was the not feeling good or the pregnancy hormones but I couldn't help but get emotional that the weekend was ruined.

Ricky took the reins (which he'd already had the whole week I was gone) and made sure the boys and Easter was taken care of. He took them for their pics, snuck out while they were behaving at home with me to buy the goodies for their baskets and made sure they had a memorable weekend even though mommy was out of commission.

Have I told you how much I love that man?

I finally woke up this morning feeling about 90% and immediately became overwhelmed with all the catching-up I had to do - piles of laundry, stacks of unpaid bills, emails to respond to, etc. And just when I started to feel like I was making some progress on the homefront, Ethan ran inside from playing in the backyard and puked his poor little brains out into the toilet. He literally did not move from the bathroom floor for a solid 2.5 hours. He wouldn't let Ricky or I tuck him in bed or change his clothes. I've never seen him like that, poor baby. When he fell asleep, head in bowl, we took the opportunity to move him to the guest bedroom for the night. Of course not before preparing the room haz-mat style with old blankets, towels and buckets. And that is where he has been since 6:30pm.

Keeping my fingers crossed that Aiden and Ricky avoid the ICK, especially since we are just 3 weeks and counting from Aiden's head surgery...which by the way is already causing some mounting anxiety for this momma...but that's for another post.

I guess life really is about going from one chaotic and exhausting moment to another. Any downtime in between is considered rare and a huge blessing. Please pray that our family gets (and stays) healthy for the next couple of weeks and if you wouldn't mind thinking of us as we prepare for my baby's surgery May 1 we would very much appreciate it!

PS - the nesting that I had begun to do a few weeks ago has come to a screeching halt. The urge is still very much there but the energy is not. Stay tuned for some of those "get organized" posts I promised!






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