ET's CT

At just three week's old Ethan had to have his first CT scan for his Saggital Craniosynostosis.  Even though the skull x-rays and physical examination confirmed the diagnosis, the surgeons still wanted to have the CT scan as a road map for the surgery.  Our first go at this was to try without sedation.  Because if you have to have sedation, he wouldn't have been able to eat after midnight.  And I don't know about you, but I wouldn't want to deal with a newborn who couldn't eat for probably 12 hours. 

However before our stop to Children's Hospital, Ethan had to see Dr. Davey for a weight check.  Even though we had been gaining weight the first 2 weeks, he wasn't averaging an ounce a day.  So this week we had a goal weight of 8 lbs. 15 oz, well he totally surpassed that and now weighs 9 lbs. 6 oz.  I knew he went through a growth spurt, but I wasn't expecting him to gain almost a pound.

After the weight check we headed to Children's and their radiology department.  I was instructed to feed him down there, but they weren't quite ready for him.  So we sat in the waiting room for awhile and then finally were called back to feed him.  I got him as calm as I could with both nursing and the pacifier.  However he woke up when another kid came in to get prepped for his procedure because he was kind of loud.  But he still remained calmed.  We went back to the CT scan and he was starting to fall asleep so we put him on the table and got him all snuggled up and strapped him to the table.

He fell asleep, thank god!  However when Ethan sleeps, his head turns to one side or the other and it's because his head already sticks out in the back.  I wouldn't want to lay on that either.  So after a lot of different positions and tape we were finally able to get his head facing forward and got all of the necessary pictures without having to use sedation.  I'm so proud of the little peanut. 

We will go back to the clinic on June 25th where we will meet with the plastic surgeon (Dr. Miller), the neurosurgeon (Dr. Puccioni) and Genetics.  I'm assuming after those meetings we will have a better idea on when Ethan's surgery will be.  However we still expect it to be when he is between 4 and 6 months old so probably sometime in August.

Again we appreciate all of your thoughts and prayers.

Welcome to the World Ethan!

On Wednesday, March 20th, while playing with Braydon I thought I felt my water break. We waited until Terry got home from work, and had dinner. It still felt like something was leaking but I still wasn't having strong contractions. We decided to be safe than sorry, so we packed up Braydon and dropped him off at my dads and headed to the emergency room.

We got checked into labor and delivery. They ran the nitrate paper test and that came back inconclusive. So they ran another test and it came back positive for Amniotic fluid. However I didn't know this but figured it out when they came in to put in my IV. It took them 3 nurses and 6 sticks but I finally got my IV set up. They sent us walking because I still wasn't having strong contractions. We walked for a hour with no change, so I got hooked up with pitocin and set up for the rest of the night.

At about 8, Dr Phillips came in and had to break my water again because I had quit leaking. I was still only about 2 cm dilated so they upped my pitocin again. Around noon I got on the birthing ball to try and get things going because I still wasn't progressing, that was when things got to be painful. They gave me the epidural, and I was able to take an afternoon siesta.

By 4:30 I was dilated 8 cm so my doctor decided to stick around. At 6 pm she came back and checked on me and I was ready to push. After 20 minutes of pushing, our baby boy made his appearance at 6:24 pm weighing in at 8 lbs 10 oz 20.5 inches long on March 21st.

It's here that I must admit he didn't have a name and at first glance I wanted to call him Creighton. But I quickly changed my mind and we decided on Ethan Terence Bueltel. He was perfect in our eyes and we were so happy to have him here. Especially me 3 weeks early since he was so big. :)

For those that don't know our family story, our oldest son Braydon was diagnosed with Saggital Craniosynostosis. So we were cautiously optimistic that Ethan wouldn't have it. However concerns from our pediatrician on an oddly shaped back of the head sent us for skull X-rays at his 1 week checkup. Skull X-rays confirmed that Ethan's saggital suture has also fused. So now we get to follow the same path that we followed on with Braydon. Our two boys look like they could be twins 3 years apart and now they will most likely have matching scars as well.

Terry and I appreciate all if the concerns , thoughts and prayers. While having to take this journey again, we know with God's and all of your support we can handle anything. We start our appointments with the plastic surgeon on Tuesday. We will try our best to keep everyone updated as best as we can.

Much thanks and love,
Erin, Terry, Braydon and Baby Ethan

The Big Reveal

We had our anatomy scan on Friday, while most people are interested in finding out the gender (and trust us we were), we were more anxious (well at least I was) at the pictures of the skull.  Unfortunately Baby B-2 is just as stubborn as it's big brother and mommy.  The little one was more interested in looking towards my back then showing off parts of it's body.  We didn't get a good look at the organs or a really good look at anything.  Except the only thing it wanted to cooperate with was was revealing it's gender.  We decided we wanted to tell people via cupcakes, unfortunately with the late notice not many people showed up.  So we will let Braydon do the reveal:

So yes, Braydon is going to have a little brother.  I think he was more excited to eat the frosting then to find out that he was going to have someone to play with, torment and have a lifelong best friend.  And more good news is that there will be another boy in the family as Terry's cousin is due with a baby boy a couple weeks before us.  We joke that with my history, we might get to be roommates in the hospital together.

But since we couldn't get enough good pictures and with my history of gestational diabetes, we get to go back on the 14th for another ultrasound.  Hopefully I'll have some good pictures to share and good news that they don't see any risk of Cranio with the next one.

As a side note, my fasting sugar levels haven't been the best, so they have put me on insulin, but just being on it for 2 days has drastically helped my numbers.  Hopefully we can maintain it through the rest of the pregnancy.

Since You've Been Gone

I know it's been a super long time since I last posted.  But life with a 2 year old has been extremely busy.  Things have been going fairly well with Braydon's head shape.  However about 6 months ago we noticed that it was a little bowing in the front.  We saw Dr. Miller, and he suggested we talk to Dr. Puccioni.  It took about a month for us to be seen, but that's ok we weren't that worried.  Pretty much he told us that the decision to have the 2nd surgery was ultimately ours.  It would strictly be cosmetic and at that point in time Braydon's head was borderline in what he would recommend getting fixed.  So we decided to wait and see.

In the meantime we had Braydon's 2nd birthday party.  Of course it was Thomas the Train themed.  Braydon loves Thomas as well as all trains.  But what 2 year boy wouldn't love trains.  Don't get me wrong, he loves sports too.  Every time there is a football game on, he says "football awesome."

Braydon seems to be hitting his milestones nicely.  He's starting to speak in sentences, knows around 50-75 words.  He knows his letters and is starting to count to 5.  As far as growth is concerned his head is 51.25 cm (96th percentile), 31 lbs (71st percentile) and 33.75 inches tall (26th percentile).  We couldn't be more happier with how things have turned out.

Which leads us to today.  We had our follow up with Dr. Miller this afternoon.  He pretty much walked in and said his head looks great.  That we probably won't need the 2nd surgery, but he still wants to follow up on a yearly basis to make sure the skull continues to grow.  So since we got such good news today, we would figure that we would share some more good news with you.  Braydon is going to be a big brother.  Baby B-2 is scheduled to arrive in early April.  We couldn't be more thrilled, however very cautious.  While we know that Braydon's condition was a "fluke", we still are concerned that any subsequent children we have might have the same condition.  If it were to happen again, at least we are "prepared" for what is going to happen.

I hope that everyone has enjoyed their summer and gets to enjoy the fall (that is if you even get one).

It's Been A Long Time Coming

Wow, I can't believe it's been 5 months since I posted.  But life with a toddle is interesting at best.  We've been used to the walking, but now he's climbing on everything.  And well let's just say he's like his mommy and likes the electronics.  When I finally get time to sit at the computer, I'm to exhausted and want to go to bed.

It's been an interesting 5 months, Terry had to have a benign lymph node removed in October.  We were worried that it might be cancerous, but luckily for us everything checked out.  We finally got to enjoy the holidays this year, I even attempted to help cook Thanksgiving Dinner.  I more or less watched my mom do it, but I'll know for next time.

We also got to enjoy Christmas with our families because we didn't have to worry about getting Braydon sick before his surgery.  Unfortunately, we were the ones who were sick.  So hopefully we didn't pass our germs on to everyone else.  Braydon was uber duber spoiled at Christmas.  I literally thought Santa threw up toys all over my living room.  But you know what, he plays with them all and is super happy.  He's also a very healthy 17 month old.  Who would have thought that would be the case after the past 17 months.

It's hard to believe that a year ago tomorrow, we trusted our babies future in the hands of 2 surgeons we barely know.  Now we owe them everything for what they have given us.  Everyone comments on how perfectly round his head is and there are NO signs of brain damage or any trauma.  He's a babbling, running, climbing, all 17-month year old little boy.  I couldn't imagine life without him.

I hope that as he gets older, I'll be able to write more just so we aren't doing the 6 month updates.  He changes so much from day to day and I would like you to all enjoy him as we do each minute.  But to tie you over, here is a before surgery picture and where he's at now.  And yes, he's now a blondie.

Before:

After:

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