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.

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.

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

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.

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.

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.