Thank you for visiting. Braydon was diagnosed with Craniosynostosis at his 2 month check-up. I hope that reading his story, it will help out another family going through a similar situation. Also Ethan was diagnosed with Craniosynostosis at 1 week old.

Saturday, September 7, 2013

Finally Moved to Intermediate Care

At about 5 o'clock we finally got a room up on the intermediate care floor.  So now we are accepting visitors if you want to come up, just text me and I can tell you the room number.  However we may get to go home tomorrow so there might not be much time to visit.  So go ahead and call first and I will let you know where we are at.

Ethan is doing a lot better.  He is eating like his normal self and his eyes aren't as swollen anymore.  He still has a lot of swelling in his head though.  Right now he's watching the Michigan Norte Dame game because we don't get the special Big Ten Network channels here.  So Terry facetimed his brother on our ipad and is watching the game over my phone.

I will try and post another update before we get home.

Still in ICU

Well, we are still in ICU thanks to an over crowded hospital.  Oh well, hopefully we will get to move today.  Ethan slept a lot better than he did last night.  Last night was pretty rough for us.  He was easily agitated and ended up needing a blood transfusion.  He is doing a lot better though and his blood work had come back clean.  However his eyes are swelling shut so I have a feeling we will be in here longer than we thought because of the swelling.  Thank you for your continued thoughts and prayers!

Friday, September 6, 2013

Into to the morning....

So we are technically into day 2 of our hospital stay as it is now after midnight.  Terry let me sleep for a couple of hours so I should be able to stay up for the rest of the night.  Ethan is such a trooper.  He already managed to get rid of his arterial line and one of his IVs.  Granted he did them himself and he probably shouldn't have lost them this quickly, but if it means I get to hold him sooner, I'll take it.

He has had 1 oz of Pedialyte and seems to be holding it down, so we will start giving him an ounce or two of breast milk.  Once he can keep that down, we can start Lortab and Tylenol as his pain medicine and that's one step closer to getting out of ICU and onto the regular floor.  Which also means we are a step closer in taking him home.

Terry and I can't tell you how much it means to us that our family and friends took their time to text, call or facebook post that they were thinking about us.  We truly felt your support and I think that's why it seemed to go so fast once we finally got into surgery.  Also I truly believe you guys provided the strength Ethan had while waiting for surgery.  He was barely fussy even though he hadn't gotten to eat for over 6 hours.  And if you can see, he rarely misses a meal.  :)

I will try and post another update once we get moved onto the regular floor.

Thursday, September 5, 2013

On the other side

We made it!  Ethan is getting situated in PICU!  It won't be long and I will have my baby boy by my side again!

Everyone keeps telling us how great he did!

Halfway There

Neurosurgeon is done.  Bones were fused kind of weird but was fixable.  Plastic surgeon is still molding skull back together.  Should be done in a half hour or so.  Hasn't needed a blood transfusion yet.  Everything is going great so far.

Just getting started

Just getting started as it took awhile to get all the lines in.

And so it begins

After running behind by about a hour and a half, Ethan is finally is surgery.  As we get updates, I will try and post them here.    Please keep Ethan in your thoughts and prayers as well as the surgeons, nurses and other staff as my baby's life lays in their hands.

Saturday, August 31, 2013

It's the Final Countdown!

We had Ethan's pre-op physical done on Thursday.  And as long as he doesn't get sick, we got the go ahead for surgery.

Surgery will be on September 5th at 11:15.  We have to be at the hospital by 9:15.  I sure hope they are on time because chunky monkey can't eat after 7:15.  Poor kid can't go 3 hours without eating.

We appreciate everyone's kind words and thoughts.  The first night after surgery we will be in ICU, so at that time we would appreciate not having any visitors.  However after we are moved to the surgical floor, Ethan would love to see or hear from you if his eyes are swollen. I will try and keep the blog updated during surgery.  Here's to seeing Ethan in the other side.

Thursday, July 25, 2013

3 Year and 4 Month Check-ups

For the first and only time, Braydon and Ethan were able to get their well checks at the same time.

Braydon weighs 35 lbs (80th percentile) and is 3 ft 1 and 3/4 inches tall (48th percentile).  He had a blood pressure of 103/66 and a pulse of 115.  Developmentally he is right on track and even above the curve when it comes to recognize numbers and counting.  So Dr. Davey told us if we want to start some phonics and having him read to us we could do that.  Here's to hoping I can have my own Little Einstein.  :)

Ethan weighs 16 lbs 3 oz (70th percentile), is 24 1/2 inches tall (30 percentile) and head circumference of 44 1/4 cm (90th percentile).  Developmentally he is also fine, so while we have an issue with Cranio, it is not causing any developmental delays and we won't be doing any further testing on the boys.  We also got the go ahead to start on cereal and solid foods if Ethan likes the cereal. 

So besides their funny head shape, my boys are as close to perfect as they can get.  And I will take it because I couldn't ask for anything better.

Braydon 3 Year

Braydon 3 Year

Ethan 3 Month

Ethan 3 Month

Friday, July 19, 2013

Is it Genetic

Heard from the geneticist today.  Which was a lot sooner than expected.  So the good news is that their Cranio panels came back normal.  So technically we still don't know what caused both boys to have Sagittal Craniosynostis.  However the geneticist thinks that it somehow results from Terry, but I guess we will never know.

She wants to follow up with them in a couple of years, unless they show signs of developmental delays. She asked how Ethan was doing and when I mentioned his headaches, she suggested I call Puccioni's office to see if surgery could be sooner.  Depending on how bad things get, we may call after Braydon's birthday party.  If not the countdown is now at 48 days.  

Thank you again to all those who have thought and prayed for us.  Your thoughts and words mean everything to us.

Tuesday, June 25, 2013

Craniofacial Clinic Appointments

So the boys had their clinic appointments today.  Since we have already been through one surgery we didn't have a lot of questions.  So we ended up doing more waiting then meeting with the doctors.  Plus our neurosurgeon had an emergency so we didn't even get to meet with him.

We did meet with a geneticist, and she's pretty sure there is some genetic reason as to why our boys have Cranio.  It's just whether or not we can find it.  So we went ahead and got both boys tested.  Let me tell you that was a fun half hour, especially after being there for 3 hours already :).

We won't be able to find out the results for probably 3-4 months.  Next stop on the journey is Ethan's surgery on September 5th.

Thursday, April 11, 2013


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.

Saturday, March 30, 2013

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