May 23, 2012

Aiden's post-operative progress

It has been three weeks since Aiden's cranial vault surgery and he is doing great! Despite the fact that the swelling and incision in his head appeared to be painful - I have no reason to believe that Aiden experienced much pain during his recovery. He never complained about it hurting once!

The thing that was most difficult for him was the frustration of not being able to see for 5 whole days after surgery. We were not expecting his eyes to be swollen shut for that long. Because of the stitch placed in the corner of his eyelid, he was not able to open them on his own while the swelling was still substantial. However he started to pull down on his eyelid and soon realized that if he did so, he could see through a small sliver of an opening. In fact, he wanted to watch the KY Derby (on DVR) so badly and that is what sparked this breakthrough. When he pulled it down and saw the horses he got so very excited, yelling "I see horsies mommy! I can see!" It was a goose-bumps kind of moment.

We kept him out of school the entire week post-surgery for obvious reasons. However his personality and determination bounced back very quickly. As soon as he started being able to see without having to physically pull down his eye-lid, he was more than ready to head back and see his friends. So 2 weeks post-op, back to school he went!


When I dropped him off, many of his friends commented on his appearance, which I expected. While Aiden was gone, the teachers in his class and Ethan's class shared information about his surgery with the kids and showed them pictures from my blog. I think this helped ease some of the concern and questions, but they were still ready with comments nonetheless. "He looks angry. Why is he mad?" was what we got mostly. I explained that because of his operation, his forehead looks a little different and is swollen. I assured them he was not angry, rather he was in fact very excited to be back with his friends and ready to play. I told them the swelling would go down over time and he wouldn't look so "mad" anymore.

One little girl piped up and said "Aiden will you still play with me on the playground?" Aiden smiled and said "Yes!" And that was it. I knew he would be fine.

We've been sending weekly post-op pics to Dr. Fearon and his nurse Cindy to make sure all continues to look well. So far, they are very pleased with the progress, saying that the amount of swelling is as they would expect each week. I have voiced my concerns that the brow bone seems to be much lower than I originally imagined it. I'm hoping that Aiden's big bright eyes are not inhibited by the placement of the bone as it seems he is still unable to open them all the way. Dr. Fearon and Cindy have both said the appearance will improve as the swelling continues to go down - noting that it may take several more weeks.

All in all, Aiden seems to be back to his silly self and things are finally back in full-swing around here. Our focus is now on getting Hudson's room ready and preparing for our summer visitors. In just 2 weeks, my sister, mom, aunt, nieces and my cousin's little boy are coming to Texas!!! Can't wait :)






May 22, 2012

Breaking up (with your doctor) is hard to do

Remember how just 6 weeks ago I wrote this post? Yeah, well it's finally caught up to me. This carrying-a-human-being-in-my-belly thing.

I'm no longer basking in the glow of pregnancy. I feel huge, which makes the fact that I have another TWELVE weeks kind of disheartening. How in the world will my baby have room? How will I breathe? How will I walk?

I'm officially in the 3rd trimester (!) and this little boy is proving to be just as active as Ethan and Aiden were in utero. Yes, I did confirm that this baby is indeed a boy (this may be the one time in history my mom was proven wrong)...

Don't get me wrong, as uncomfortable as I am, I am equally in awe of the amazing ways a body accommodates a growing baby. When I'm sitting very still and Hudson begins his frequent dancing it amazes me that I can look down and physically see my belly rise and fall with his movements. The pain? The discomfort? Doesn't matter in those moments when I'm reminded that 'HEY! There is a BABY in there!' ("Like" More Skees Please on Facebook to see video of Hudson's belly dance)

In other news, I recently made a huge decision regarding my pregnancy.

I broke up with my doctor.


Yep - after several months of just not feeling great about the care I was receiving, I finally decided to take matters into my own hands and search for a new provider. It was kind of scary - the prospect of leaving the doctor that I have been with since our move to Texas. After all, he is the one who has seen me through infertility, two miscarriages and finally getting pregnant. Ironically, it wasn't until I was actually pregnant that I feel things began to go down hill.

From the moment I got pregnant, he seemed uncomfortable having me as a patient. Maybe it's my history of preterm labor that scared him or having had a child with a surprise diagnosis at birth. Or, perhaps it is all in my head. I'm not really sure but in the end it doesn't really matter. His perceived lack of confidence and/or patience didn't sit well with me.

I confessed early on that I was going to be nervous this go around. Surprisingly, once we got past the 1st trimester my nerves settled. I love my high-risk OB and have been reassured through multiple screenings and ultrasounds that this baby looks 100% healthy.

But comments like "you don't need to call me with questions once you hit 20 weeks - if you can afford it, just go straight to the Women's Center" and "besides, this baby isn't even viable at this point" when I was 18 weeks along seemed a bit uncaring. I want someone who is interested in being there for me. Who will take my phone calls - as frequent as they may be - and at least try to answer some questions without sending me straight to the hospital for someone else to deal with me.

I want - no, I deserve - someone who recognizes that telling a patient who spent a year trying to conceive and who suffered two miscarriages that the pregnancy isn't "viable" yet might not be the most encouraging way to go about things. These insensitive comments, along with a few other incidents that brought about some trust issues, led me to take the giant leap of faith at 27 weeks along.

I'm happy to report that I've met with and selected a new doctor and am very confident in my choice! One less thing to stress about :)

Have you ever left a doctor after a period of time?






May 13, 2012

My kind of Mother's Day

After a pretty crazy few weeks, I was really excited to lay low this Mother's Day and celebrate it quite simply: hanging out at home, the boys running through the sprinkler, a good meal and maybe a nap.

And that is exactly what we did.

My boys let me sleep in - although 8am may seem early, it is an extra hour of sleep that I don't normally get. When I finally got up Ricky asked if I'd like to go get breakfast at Cracker Barrell. He read my mind.

Next, we came back home and enjoyed the amazing weather. It was mid-70s all morning and we just got a cute little bistro table for the back porch so we sat out in the fresh air and watched the boys play in the backyard.

Suddenly an urge for ice-cream hit me. Even though I have NEVER liked Mint Chocolate Chip, Hudson had other plans and the craving took over. So we piled in the car and went to the closest ice cream place...but...no Mint Chocolate Chip.

Luckily the Chocolate Chip Cookie Dough was an equally acceptable replacement.

Afterwards we let our imaginations run wild as we toured a few model homes in our neighborhood - one with an asking price of a meager $508,000. Don't get me wrong, I love our home, but wandering through these professionally decorated models with their perfect window treatments and gorgeous hand-scraped hardwood floors left me thinking "Can you imagine living here?" And yes, I most certainly could.

Once we got back to our (much more humble) house, I stretched out on the couch and fell asleep. For 2 HOURS! Ahh it was great.

When I woke up, the entire house had been picked up - toy room, boys bedroom, our bedroom, living room, kitchen. A clean home always makes this momma happy :)

We then fed the boys dinner, gave them baths, snuggled in bed watching a kids' show and tucked them in for the night.

Finally, Ricky fired up the grill and we capped off the evening with an excellent dinner of NY Strip, asparagus, corn on the cob and new potatoes. Dessert? Hot apple crisp a la mode. Mmmmm.

After (almost) 7 years of marriage (May 20th!), 2 kids and 1 on the way, Ricky sure nailed it this year. He certainly knows me well! Thanks for making my day so very special babe! I love you and I LOVE being a mom :)






May 08, 2012

Getting back to normal...slowly but surely

My mom left this afternoon...boo. It's amazing how clean my house got (and stayed) while she was in town. The night before Aiden's surgery, she asked me over the phone what she could do to keep herself busy to burn some of the nervous energy she would have while she waited for updates about Aiden. Since Ethan was going to be at school, she needed something, preferably not shopping (or she'd blow all her money) to keep her mind off things. Busy work. So I didn't hold back...I suggested that she could clean our bathroom.

I thought maybe she would laugh and ask if I was serious - but not my mom - she didn't bat an eye. Not only did she spend 3 hours scrubbing in there, she also changed our sheets, dusted, vacuumed and cleaned our bedroom. There aren't many people I would let clean my bedroom. But my mom? Go for it.

I can't begin to tell you how nice it was to come home from Dallas to a clean house. And when I say clean, I mean top to bottom. She even decided our Wet Swiffer wasn't sufficient enough to deep clean the tile floors so she purchased a Shark Steam Cleaner and conveniently left it behind as a "gift". Now if this would have been a gift from my husband for our upcoming anniversary I would not have been as excited, but in this instance, this gift is right up my alley!

Oh and the laundry. I call her my laundry fairy because what would take me a week, she has washed, dried, folded and put away in less than a day.

Having my mom here has taken a huge burden off of us in more ways than just keeping the house tidy. When she called to tell me she was booking a flight to come down during Aiden's surgery, I burst into tears. Ricky and I had been discussing our plans to bring Ethan along with us to Dallas and although we knew we could make it work, it would have meant splitting our time with Aiden while at the hospital (because kids are not permitted in the PICU) and quite honestly, it would have been a lot to handle. However we knew we could not ask or expect anyone to spend the money to fly down to bail us out.

The fact that we didn't have to ask - she just offered - was such a relief.

Not to mention the fact that my boys just love having their nana here. There is something about her hugs, her storybook voices, the way she makes lunch and how she tucks them into bed, that makes having her here so special. The best part? I know she enjoys being here as much as we love having her. Thank you mom! We love you!!!!

**************************************************************************

We are exactly 1 week post-op. I am SO beyond relieved to have this surgery in the past. Finito. Complete. We can check this off our list and pray that we don't revisit any more operations in the near future...

As of this morning, Aiden has been able to open both eyes without having to physically pull down the lower lid for vision. This means he has been able to get around on his own, eat on his own and has all around just been happier. Wouldn't you be if you were finally able to see after a week!?!

I have so many thank-you's to write and I hope to tackle that task this week, but in the meantime, please know how much our family appreciates EVERYTHING everyone has done for us, big and small: prayers, sharing our blog for awareness, sending Aiden and/or both boys treats to put a smile on their face, meals to make our lives easier, heartfelt cards and sweet words of comfort, etc.

Now, the boys would like to share a few words of their own...enjoy!









May 04, 2012

Home Sweet Home!

Just a quick post before I hit the sack tonight as I am thoroughly exhausted.

We got discharged from the hospital on Thursday around lunch time and were told, much to our surprise, that rather than going to the RMH for 2 days, we could drive back home! They thought Aiden was doing well enough and since we are just 3 hours from Dallas, there was no reason to make us hang around - if an issue arose in the 48 hours after we left, we'd be able to just jump in the car and head back - so home it was!

Aiden slept for most of the drive and was SO happy to be in Nana's arms when we got there. Ricky and I surprised Ethan by picking him up from school that afternoon - he wasn't expecting to see us so he was super excited. "You're home! You're home!" he shouted as he ran into our arms. "Where's my Aiden?" he asked next. His teacher was so moved she teared up at our reunion :)

Sippin' on a slushie and craking a silly smile :)
Ethan could hardly stand the 3 minute drive from school to the house, anxious to see his little brother.

The day before, I talked to him on the phone and asked if he'd seen the pictures of Aiden after his surgery. He said he had and that he "looked good" but that he "didn't want Aiden to change". We had explained that Aiden was still Aiden, only his head had to be made a little bigger so he could continue to be super smart.

On that short 3 minute drive we talked briefly about how Aiden looked. I was worried Ethan would be scared by the amount of swelling. But once home, he ran to Aiden, took one look and said "I'm so glad you're home! I missed you buddy!" It didn't even phase him.

My boys continue to amaze me.

While we were gone, Ethan spent a lot of time thinking about his brother - making him cards, "Welcome Home" posters that he hung in the garage so we would see them when we pulled up, and he even personalized some large rocks. Five of them with our names on them. One for mommy, one for daddy, one for Aiden (in his favorite color orange), one for himself and one for Hudson. They now decorate our front landscaping :)

Aiden slept well last night. With his eyes being swollen shut still, we didn't feel comfortable putting him in his own bed - even though Ethan begged to have his roommate back - so he slept in with me, and Ricky kept Ethan company upstairs. The swelling is starting to decrease for the most part, with the exception of his left eye which has gotten much worse. It has turned from a deep, dark purple to a brighter pink and is so puffy it looks as if it could just burst any minute. I took a picture, sent it to his doctor, and was reassured that it is normal and nothing to be concerned about at this time.

Despite complaining about his eyes hurting and being frustrated that he can't see what is going on around him, Aiden has been nothing short of amazing. He's starting to get his silly personality back. He's eating like a champ. He's not asking for much other than for some extra snuggling...which I will always happily oblige.

Keeping our fingers crossed that tomorrow will be the day where his eyes will start to peek open. It's got to be hard to live "in the dark" for going on 5 days now!






May 03, 2012

Raising Awareness: "All About Aiden"

Many people have emailed asking about the book I made about Aiden and how to purchase it. I made this book online and it is available for purchase for $25. (That is simply the cost of the materials to print/make the book, I intentionally set the profit to $0 as sharing the book and raising awareness is the ultimate goal).


All About Aiden
by Taryn Skees
All About Aiden

I read this book to Aiden's preschool class of 3 and 4 year olds last fall during the month of September, which also happens to be Craniofacial Acceptance Month. I truly feel if we as parents start educating our kids from a young age about those with physical differences and disabilities, we can create an atmosphere of understanding and acceptance. Kids are curious and sometimes they speak without a filter - which most of the time I find humorous. I decided to make "All About Aiden" as a tool for me to anticipate and articulate the appropriate responses to their very perceptive questions. 

If you are interested in purchasing this book, just click on the link above. You can also find an online version of the book in its entirety - which can be pulled up on any computer at home or in your child's classroom if you'd prefer to share it without purchasing.

Either way, I would LOVE to hear from those of you who have decided to share "All About Aiden" with your child or their class. When you do, you will get a very special "thank you" from little man himself!






May 02, 2012

* VLOG * It gets worse before it gets better

The swelling that is.

With the actual surgery day behind us I truly feel like the worst is behind us. He was anxious, I was a mess, we were sick with worry. Now, we can breathe easier knowing that it all went well and our baby is going to be just fine.

Here is a video I made last night - but the internet wasn't working at the RMH so I was not able to upload it until today.



After going back to the Ronald McDonald House last night to get a good night's sleep (thanks Ricky!), I was a little nervous to come back and see how much the swelling had increased. Even though we've been through it all before it is not easy to see the size of your child's head expand dramatically overnight.

His eyes are swollen shut and the lids are black and blue. Throughout the day today it has slowly increased, making the skin on his forehead, cheeks and nose stretched to the point that it shines. The swelling should peak tonight/into tomorrow and will then start to slowly subside.


Even though you might look at the pics and think "OUCH", Aiden says he doesn't feel any boo-boos so we feel confident he isn't in any pain. He is, however, extremely frustrated that he is not able to open his eyes. At this point in the evening I think he is starting to get used to it, but earlier today he just kept saying "I want to see, I want to see." We tried explaining that although he cannot open his eyes now, he will be able to soon. We didn't want him to get too worked up thinking that this was permanent.

He is off all meds and all IVs have been removed - the final one was not done by a nurse, but by Aiden himself! Blood squirted everywhere, but aside from just being messy, it caused no problems and Dr. Fearon said we could go ahead and leave it out (it wasn't hooked up to anything, they just left the line in his hand in case they needed to give him anything unexpectedly).

He has eaten his weight in orange popsicles, took a few bites of strawberry yogurt with fruit and even nibbled on a cheese quesadilla a while ago. He is also taking fluids quite well. All of this means we should be on track to be discharged first thing tomorrow morning!

Aiden is very ready to go to the Ronald McDonald House and even more ready to get home to Nana and Ethan and sleep in his own bed. I'd have to say I feel the same way!

One final note - it's been hard to get him to crack a smile today, but when I told him that all his friends in the Froggy class at Kids R Kids, and the teachers, sent him a huge handmade card, he didn't hold back! Wish I would have caught it with my camera. Thank you for brightening his day!!!






May 01, 2012

The new and "improved" Aiden...

I am happy to say that Aiden's surgery is complete and everything went great!

The toughest part was handing him over from my arms to the doctor and watching them wheel him farther and farther away to the operating room. It's so hard - not knowing if that will be the last time your baby will lay in your arms. It may sound dramatic, and I know that realistically most surgeries end well, but the more times you go through it the more worried you become that "what if this time" something happens.

That fear is enough to paralyze a momma's heart. Ricky and I sat there where his bed was minutes before and held each other, crying, wishing, praying. I don't know how long we sat there, but the tears continued to flow freely even after we collected our things and exited the pre-op area.

Baby Hudson began kicking, reminding me to EAT SOMETHING, so off to the lobby we went in search of food. Even though eating was the last thing I wanted to do. Over breakfast I began thinking about just how much emotion a heart is capable of feeling. It got me wondering if those stories you hear about elderly couples dying within days of each other from a "broken heart" might actually have some truth to it. Sometimes when we are in the throes of Aiden's Journey I wonder how much pain my heart can feel before it would literally break in my chest. Maybe the amount of love balances it out, keeping it in tact. Only God knows for sure the workings of our mind, body and soul.

I do know that I am humbled by the outpouring of love and prayers from across the country - all for our Aiden. Keeping up with all the emails, Facebook posts and messages sure made the time fly by and calmed our nerves as we waited through the 3.5 hour surgery.

We are now in the PICU in a private room and Aiden is resting comfortably. They have given him a med to help relax him as he tends to be extremely feisty coming out of anesthesia. He opened his eyes slightly at one point and called out for me :) Ricky and I were able to reassure him of our presence which settled him right back down. Then he asked for "Jake" - his stuffed toy from Jake and the Neverland Pirates and snuggled back to sleep.

After speaking with Dr. Fearon (craniofacial surgeon) and Dr. Sacco (neurosurgeon), they informed us that everything went as planned during the procedure. While his brain didn't "expand" immediately as it had done during his previous cranial vault (indicating increased pressure), the skull bone was a bit thin which might be attributed to things beginning to get a little tight in there. Either way, the surgery was needed and successful.

Dr. Fearon pulled the brow bone out - or "overcorrected" - by about a 1/2 inch. This would be equivalent to 2-3 years of normal growth. They also put a nasal bone graft in between the brow bones to improve the shape of where the nose meets the brow.

They were able to open the previous wavy incision with little issue and once again, the wound looks amazingly thin and clean. We are confident that you will hardly be able to see it once it is completely healed. Dr. Fearon believes leaving the head wound uncovered allows oxygen to penetrate the incision and promotes a faster healing rate.

As for treatment plans in the near future, he doesn't anticipate any surgeries for around 4 years when he will undergo the midface distraction with the RED device. This is great news as I will most likely need every ounce of 4 years to prepare myself for that one!

Ricky just went to grab lunch, then we will tag team - we don't want to leave Aiden's side in case he starts to  wake up. If we can swap out the broken recliner in our room with a better one I am going to stay the night with him and Ricky will catch up on some sleep back at the Ronald McDonald House. I really want to be the one here with him, but Ricky has already been urging me to let him stay so I can sleep comfortably, you know, since I'm 6 months pregnant and all. We may be fighting about this until they kick one of us out tonight at 8 :)

Here are a few post-operative pics. He is only slightly swollen at this point, however the swelling will increase quite dramatically over the next 48 hours before it finally starts the slow process of subsiding (which will take a good 4-5 weeks). They assure us he is not in any pain - might just have some headaches (um, I'd say so) but from the older kids who have undergone this same procedure, they've been able to conclude that the incision site itself and post-operative pain is not too bad.





Thanks again for following Aiden's story! Feel free to share it with others by using the buttons at the bottom of this post - these craniofacial kiddos go through so much and I want to spread awareness!






Related Posts Plugin for WordPress, Blogger...

  © Blogger template 'Solitude' by Ourblogtemplates.com 2008

Back to TOP