Life on the run...

I know it's been a long time since the last time I posted.  You all probably thought I had forgotten about this blog.  But life with a mobile 11 month old has been crazy.  Since the last update we have gotten 2 bottom teeth and the top 2 have broken through.  We learned to crawl and went to see Grandma and Grandpa Pitzer in Louisville.  So we got to go on our first airplane.  Over the last couple of weeks we have even started to walk.  Every day Braydon takes more and more steps.

This makes me cry tears of joys.  It's amazing that 6 months ago we were awaiting a surgery and wondering if our baby boy was ever going to be "normal".  He was perfect to us, but to other standard he wasn't.  He wasn't hitting his milestones and his head was shaped like a football.  It was 6 months ago that we took him to Children's Hospital and left our baby boy's life in the hands of 2 surgeons.

Now 6 months later and you could have never known that he had super dark hair when he was born or that his head was shaped like a football.  You would have never known that he cried all night long or that all he ever wanted was to be held and lay still.  Because all he wants to do is go go go.  He has super blonde hair and his head is perfectly round.  He's walking at 11 months and hitting the milestones at a lot earlier age.  He's learning to use the sippy cup, but I still think breaking him from the bottle is going to be hard.  He eats all table food now, even though Terry mashes it up to look like baby food sometimes.  He worries that Braydon is going to choke.  Braydon likes to stuff handfuls of food into his mouth. 

We always thought we were going to have a baseball player, but we might end up with a linebacker.  As this little guy has learned the art of charging the dog or us and lowering his head.  I worry that his head will break, but he shows no fear.  He is our miracle and I thank god every day for the blessing that he provided us.  Times were tough and they still can be trying, but I could never imagine having as much strength as our little boy had when he went into the operating room.  I also wish I could live without fear the way he does, but hey someone has to worry right?

In less than one month we will celebrate his first birthday.  It's amazing how far we have come in the past year and can't wait to see what the future has in store.

Before Surgery -

After Surgery -

Braydon is an Angel

Braydon's story has been posted to Avery's Angels.  This is a non-profit group started by a mom of a cranio baby.  She started off making headbands for little girls and now is making do-rags for little boys.  Please read Braydon's story.

Braydon's Story

 

Also Braydon's picture is featured on the Sagittal Craniosynostosis description page.

Sagittal Cranio Synostosis

Can you believe it?

I know it's been a long time, but living with a curious 7 month old, doesn't leave a lot of time for blogging.  Yesterday we hit the 2 month post op mark.  And you would never know that Braydon went through major surgery unless you noticed his scar.  His hair is growing back blond and the incision site is healing up very nicely.  Also his head shape is very good.

Braydon has started to try and crawl.  He tries to grab the carpet in front of him to pull himself.  But he gets around a lot quicker when he rolls.  He will also scootch backwards.  I can't believe how big he is getting.  I really miss the newborn stage when I could just hold him and snuggle him.  But I don't miss the staying up all night.  Braydon will sleep from about 7:30 at night to about 5:00 in the morning.  He will go back to bed if you snuggle with him for a little bit.  He's eating fruits, veggies and dinners 3 times a day and will even eat a Vanilla wafer or 2.

He babbles a lot unless you put a phone or get him on the webcam.  I think he gets camera shy.  It drives my dad nuts because he wants to interact with him, but he can't.  At least they come back a lot.  He still has only really said Da Da and Ba Ba.  But we are working on Ma Ma.  I'm sure he will surprise me with it one day.  Until next time Braydon says keep on smiling.

1 - Month Post Op

Wow it's been 1 month since we handed our little guy over to the surgeons.  Braydon is doing great.  His incision was infected, but it seems the antibiotics are doing it's job.  His head shape looks awesome!  We couldn't be more pleased.

Braydon has now said ba ba and da da.  He's sitting in a high chair all by himself now, and he's upgraded to his convertible car seat.  We can also "sort of" drink from a sippy cup.  We are almost through the fruits and then he'll be able to eat anything.  Oh boy!

Heaven help us, because our little boy is growing up so fast.

6 Months Down, 6 More to Go

We started off the week by seeing Kristin at Dr. Puccioni's office.  She's the physician's assistant to Dr. Puccioni and she is super nice.  When she walked in she was amazed at how great Braydon looked cosmetically.  Like Dr. Miller, she was sure that Braydon wouldn't need another surgery to remodel his skull.  Braydon was giving her the stare down, it sure does take awhile for him to warm up to someone.  But at least he didn't cry when she was touching his head.

She thought he was doing really good.   She told us that it would probably take awhile for the soft spot to close, but in case it doesn't they can take a portion from the other side of his head and split the skull and use it to fill the hole.  And then put the remaining piece back.  Then it should grow back in.  She also told us we can start putting Neosporin on his incision site and start scraping off the scabs.  I'm not sure about the picking part, but we definately could put some Neosporin on his head.  We have to go back the first part of April to see Dr. Puccioni and hopefully he will clear us and hopefully we won't ever have to see him again.  Not that we don't think he's a nice guy, I just don't ever want to have to deal with this again.

Kristin was also very helpful in answering our questions.  As long as Braydon's skull fills in the big holes, he won't be restricted in any activities.  He'll be able to play football, baseball or any sport that he wants to.  Or if he wants to be a dancer, he'll be able to do that to.  My money is on a Steven Tyler replica.  That boy can scream.  :)  I also asked her about the possibility of some brain damage because Braydon won't roll over from his tummy to his back and he was having a hard time sitting up by himself.  My fears were put to ease by her and also by Dr. Davey at his appointment.  Kristin said that she doesn't believe that there was any damage, and said if you had all those headaches all you would want to do is lay on the couch.  So it probably made him feel better to lay down.

We then met with Dr. Davey for his 6 Month Check-up.  His stats were 18 lbs 5 oz in weight (he gained a pound since surgery), 25 3/4 inches in height and head circumference was 46 cms.  His head size didn't increase since his surgery.  He is now in the 62nd percentile for weight, 23rd for height and 94 for head circumference.  Since Braydon had his surgery, he finally got on a curve line for his head.  Before he was way off the charts.  :)  I would have thought that since his surgery, his head size would have decreased a lot.  But Dr. Davey told us that most of the time Cranio doesn't really affect the head size to much.  He just told us Braydon is going to have to have a big hat size.

His check-up went great from all other standpoints as well.  I told Dr. Davey about Dr. Byrne's concerns about his eyes and my fears were put to ease.  There is absolutely nothing wrong with his eyes.  Thank you to the lord that nothing else is wrong.  also he told us that his little pee-pee is getting better.  We still have to pull the skin back, but we may not have to surgically fix it after all.  He told us that developmentally he is right on par.  Since he can at least roll over one way, that is perfectly fine and as long as he can sit up while being supported he is right on track.

From a diet standpoint we still need to give him about 32 ounces in breast milk and formula.  Once we get through the fruits (we have apples, pears and peaches to get through), we can start pureeing what we are having for dinner and give it to him.  He also can have Biter Biscuits, but I have no idea what those are.  So if someone could tell me that would be great.  In a couple of weeks we can start Cheerios and Puffs along with crackers and yogurt.  By the time he is 8 months old he can have bread and some soft food.  By the time he is 9 months old he should be eating finger food.  I'm sure I will have to wrap my house in plastic wrap when that happens because he is already throwing stuff.  :)  Or Dakota is going to become a fat dog because I'm sure Dakota will eat more than Braydon.

Braydon had to get 3 shots and the drink.  Poor little guy, but he did so well.  We do think that he had a little reaction to the flu shot, because he was running a fever on Friday.  And that has never happened and that was the only new shot they introduced.  I guess we can confirm our suspicions when we bring him back in a month to get his second dose.

We took him to get his pictures taken after his appointment.  I know it was a genius decision to take pictures after his shots.  But it was the only time we really had.  It took him awhile to warm up and he only lasted about 20 minutes.  But we got enough good shots.  I'll share some of our favorites with you.  Until the next time Braydon says keep on smiling.

He looks good, oh he looks so good.

Had our first follow-up with Dr. Miller today.  And he says Braydon looks great.  The stitches will flake off here in about a couple of weeks.   It will take a while for the skull to regenerate itself and fill in the soft spots.  But if the rare chance it doesn't they will have to go in and do some bone graphing.  He told us about the minute chance of needing a 2nd surgery for the forhead but would be totally surprised if he needed one as his forhead looks pretty good right now.  We won't have to go back and see him until April 22nd.  So Braydon will get checked out right before we leave for Louisville.  Hopefully there aren't any setbacks between now and then that would make us have to cancel the trip.

Next stop on the recovery train is Dr. Puccioni's office on Wednesday.

WOW - It's been 2 weeks!

Time surely does fly when you're having fun, right?!?!

I can't believe it's been 2 whole weeks since Terry and I were waiting around Children's Hospital Surgical waiting area.

Braydon is doing great.  He's still not sleeping but I was told that was "normal".  It will probably take up to 6 weeks for him to get on a normal schedule again.  It seems like his development has increased in speed.  He's reaching for everything, including the tubing for my breast pump and every single cord.  He also wants to type on the laptop's keyboard if we are holding him on our laps while sitting at the computer.

Braydon also is making bubbles and "spitting".  He will also do Raspberries on any body part he can get his mouth on.  And if he's not in contact with skin, he will make the noise.  I can't believe that on Sunday he will be 6 months old.  It seems like only yesterday that he was born.

I'm scheduled to go back to work on February 1st, but I might go back next week for half days.  That is if Braydon's doctor thinks it's a good idea and I clear it with my boss.  Braydon has really bad separation anxiety and sometimes even Terry can't console him  He wants his mommy all the time and it's going to be heartbreaking if he does that when I go back to work.  So hopefully if we take it slow, he'll get over it.  At least I'm hoping that's the case.  Hope everyone is staying warm this winter and if it's Summer where you are at, well color me jealous.

Braydon's Soul Mate

So Braydon has found his true love.  It's just a shame he doesn't know it. 

Terry and I found a couple on CranioKids that lives in Sioux City.  Their daughter Adeline had surgery a week before Braydon with Dr. Miller and Dr. Puccioni.  She had her follow-up with Dr. Miller last Friday, so we thought it would be a good idea to get them together. 

Now we all know Braydon has a thing for older women (just like his daddy) so it's only fitting that she's almost 2 months older than him.  They played pretty well together, well just as well as a 5 1/2 month old and 7 1/2 month old.  Adeline was fascinated with his scar, but that's probably because she can't see hers.  Braydon just stared at her and drooled.  I would like to believe that it's love at first sight, but in all reality it's probably just the teething.  :)

While their hair will grow back over their scars, but I feel like they bonded over them and were talking to each other in their own way.  I believe it's the start of a beautiful friendship between Adeline and Braydon and also between the Laakes and Bueltels.  It's nice to have someone to share this journey.  While we appreciate the support from our family and friends, it's just seems special because they were on the same rocky road.  And now we can experience the recovery road together and compare heads.  Plus it's nice to ask, does Adeline have the same flat spot on her head?  Do you think this is a screw sticking out?

Until the next meeting, you can view pictures from their first date.  My camera was to slow, so here are pictures from the Laake's camera.

1 Week Post Op

I can't believe it's been a whole week since Dr. Puccioni and Dr. Miller came in and told us that they were done.  We are on our last day of antibiotics.  The swelling is almost non-existent and it looks like part of the incision is already closed together without his stitches.

Braydon has started eating like his normal self and is even eating bananas with his cereal in the morning.  And we are eating Sweet Potatoes with lunch and dinner.  The only problem is he doesn't want to go to bed at night, take naps during the day or stay asleep in his crib at night.

So it's pretty much like the last time we took him home from the hospital.  He was even pooping like a newborn.  We go see Dr. Miller next week and then Dr. Puccioni the following week.  I'm hoping that he get the all clear and won't have to see the doctors on a weekly basis.  But I have to admit the results were much better than I hoped.  Both physically and developmentally.  Braydon's personality has changed so much.  He's so happy now (well most of the time).  He squeals with delight.  While it's music to my ears, it also breaks my ear drum.  Also we put Braydon on his tummy today and he rolled over for the first time post-op.

Here's some pictures 1 week post-op.

We're Home

We made it home!

Braydon's eyes were only really swollen shut for about 4 hours and he started nursing last night.  So when both the Neurosurgeon resident and Dr. Miller came in this morning to check him out, we were discharged.

It feels really good to be at home, I just hope that I'm able to take care of him and will be able to give him his medicine.  He had a habit of spitting it out in the hospital.  We might be calling over our friends that are nurses to help us out if I can't get him to take it.

Thank you for all your love and support.  It hasn't even been 72 hours from when his surgery began, so I can't believe we made it home.  The next step in our journey is to go through our follow-up appointments with Dr. Puccioni and Dr. Miller.  Thank you for following this blog and hopefully we'll be able to describe Braydon's journey through life instead of just his Craniosynostosis.

No More Wires

Braydon's last IV has been removed.  He can now take all of his meds orally.  The dressings and drainage tube was removed this morning and also his continuous oxygen monitor.  After his 2:00 antibiotic they removed the final IV.

Braydon also got a bath today.  We will slowly work on getting all that tape gunk off of him throughout the next couple of days.

Dr. Miller came in over the lunch hour and said that we will get to go home tomorrow as long as the swelling was down and he was taking his bottles.  We're not eating as well today as we were yesterday morning.  So please say a couple of extra prayers that the little chunky monkey gets his appetite back.

We've made it to Intermediate Care

Braydon was moved from ICU to Intermediate Care around 2:00 today.  We are trying really hard to not give him morphine.  Braydon got to ride up to the 5th floor in a wagon and he loved it.  Guess we know that's the next thing we have to buy him  But he deserves it.

It seems like Braydon is kind of agitated right now scratching at himself.  He might just be overly tired.  He was eating so well and now he wants nothing to do with it.  He might just be full since he ate 6 oz of formula at noon.

We are hoping that we can get a good nights rest since it won't be long before we will be taking him home.

My little angel

Terry and I finally got to hold him.  He looks so peaceful in our arms.  We think we have weaned him off the morphine.  So all he really needs Loritab and tylenol to help manage his pain.  Every time I look at him, it just brings tears to my eyes.  He is so peaceful and while he's in pain now, I know that we did the right thing.  We will get to move to intermediate care sometime today.  We are just waiting for a bed to be open.


We can't thank the nurses and staff enough at Children's Hospital.  You have taken care of Braydon like he was your own child.  While we hope we never have to come back, we wouldn't hesitate in bringing him back here.

They say the first night is the roughest

Well if that's the case then I think I can handle this.  While it's no fun to hear Braydon moan in pain, he hasn't really been crying out and has slept for most of the night.  Terry and I have been taking hour shifts sitting up with him in case he needs anything.  While a hour sleep at a time isn't the greatest, at least it's giving us both some rest that we both need.

Well the little piggy is still in there.  He had 1 oz of pedialyte last night and kept it down so they let us give him the rest.  He chugged it down like a shooter.  A couple of hours later they let us give him 3 ounces of breast milk and he took it like a champ.  He didn't throw it back up.  So this morning he was able to get another 3 ounces.  So far so good.  I'm hoping that soon I will get to hold him as I think they'll be removing some of the wires.

Thank you again for all your love and support.  We can feel it from near and far.

We are finally on the other side!

We got moved to PICU about 6:15.  Terry and I got to ride up on the elevator with him and then had to wait in the waiting room while they got him situated.  Braydon is sleeping right now.  He has a drainage tube from his head that is removing the excess fluid and some blood.  He has 3 IVs.  One in each arm and one in the leg.  He also has an arterial line that is monitoring all his vitals.

The surgeons told us that the surgery went well, but we probably won't see the results for a couple of days as the swelling is going to get worse.  However he looks perfect right now.  Braydon ended up needing a lot of blood due to the fact that his skull was popcorn like.  That means that parts of his skull were really thick and then some parts were really thin.  So we they cut his skull there was a lot of blood.

They want him to rest as much as possible so unless he is really agitated I won't be able to him until tomorrow.  He also won't be able to eat until tomorrow.  But by then I should have plenty of milk stored up.  I just want to cuddle him but I know this is what's best for him.  Only one of us can stay through the night so that will be me.  I just don't think I can leave my baby.  I'm sure Terry will be up here bright and early.  Hopefully he brings me a Starbucks.  I hear we might be in for a rough night.

We want to thank all of you for your prayers and support.  We couldn't haven't gotten through the day without it.

My perfect sleeping angel.

And we're done

Doctors came out and told us everything went well.  His skull was thicker in places and thinner in others.  Which is why he bled a lot.  They had to give him a full body's worth of blood.  He's not awake yet and will be in recovery for a hour so they can wake him up. 

They just had to fix the back of his skull.  He did have a high amount of pressure on his brain so it's good that they moved the surgery up.  This will be my last update until they move us up to PICU.

He's almost done

They are closing up the incision and going to clean him up.  Then the doctors will come out and tell us how it all went.

Update #3

They are still working on the skull.  They need to figure out how to put it back together.  Braydon did end up needing a blood transfusion.  Once the doctors come back out we'll be able to know how much.  I guess all that iron we gave him was all for not.

Update #2

They are still working on the skull.  The nurse who does the updates leaves at 4:30 so that might be our last update.  They are seeing what they can do to make sure we still get our updates.

1st Update

Everything is going good.  They've made the incision and they are mapping out what pieces they are going to remove from his skull.

I missed the update so I'm just repeating what Terry said.  But they say he is doing good.

And the fun has begun...

Braydon went back to surgery about 2:30.  We should have our first update in about a half hour.  However it's going to take about a hour for the anesthesiologist to get all of her work done before they can make their incision.  Of course the plastic surgeon is running late.  But they are going to start anyways since the Anesthesiologist and Neurosurgeon need to do their work first.

It was a tearful good bye, but I know Braydon is an excellent hands.  Once we hear back from the news I'll post an update.

Tomorrow is the day

I can't believe that it was only 3 months ago when Braydon was first diagnosed.  It seems like it was forever ago and also that time flew by quickly.  If you know what I mean.

We took Braydon to the C.A.R.E.S unit to get his Pre-Op blood work done.  Braydon had every single news oohing and awing over him.  Everyone want to hold him and just snuggle with him.  He's going to get some serious attention in Recovery.  My little champ didn't even cry when they stuck him with the needle.  I freak out every time they draw my blood.  Braydon must have gotten his Daddy's veins because they only had to stick him once and hit the jackpot right away.

We then met with the Anesthesiologist.  She looked over Braydon and listened to his lungs.  She gave him the go ahead for tomorrow as long as he doesn't come down with something tonight or tomorrow morning.  She told us that it will take a hour to get him prepped and under before the surgery will start and then about a hour to wake him up and get the breathing tube out.  We will most likely get updates about every hour and if problems arise the anesthesiologist will come out and talk with us.

Braydon is sleeping, but I'm sure if he wakes up in the middle of the night I won't mind the extra snuggle time.  We want to thank everyone for their love and support and we can't wait to get to the other side.

Please check back tomorrow as I'll be posting updates as the day progresses.  This way you'll get the latest update and won't have to count on me returning a phone call or text.

Happy New Year!

2010 was truly a blessing for Terry and myself.  We welcomed a beautiful baby boy in July and also a nephew a couple of days later.  While the last 2 months were definitely hard work trying to get Braydon's surgery scheduled and getting a diagnosis, we couldn't have asked for a better year.

2011 will definitely start off with a bang and I know those first few days are probably going to be some of the most difficult days we will have to get through.  But after that we can look forward to so many good things that are going to happen throughout the year.  Another cousin for Braydon to play with, a couple of weddings to attend and the birth of some friends' babies. 

To end 2010 I was able to go visit another Cranio baby who had surgery on Wednesday.  I've been following her blog and needless to say, I probably shouldn't have read some of the posts so close to Braydon's surgery.  But it was so comforting to see that they truly are resilient.  Granted her head was pretty swollen, but she looked so peaceful and is a beautiful baby girl.  Maybe her and Braydon can be scar twins when they get older.  It's a shame they live a couple of hours away. 

I can't thank the Laake family enough for letting me spend time with their daughter.  It's amazing what type of support you can find on the internet.  I want to also thank all the families on Craniokids.org.  There is no way Terry and I would have survived the diagnosis without all of your advice.  We wouldn't have been armed with a wealth of knowledge when we met with the doctors.

After his surgery I'm going to turn this blog into something positive and make sure to update everyone on Braydon's milestones.  And the rain clouds are going to disappear and it's going to be nothing but sunshine from here on out.

We hope that 2011 brings you nothing but happiness and sunshine and that all of your miracles and wishes come true.