Jake made it through

Bilateral craniotomy with frontal and orbital advancement with bone grafts.  As scary as that sounds its even scarier when its explained to you by dr.'s who then perform it on your 8 month old.    

We started early today arriving at Cedar's at 5:15.  After the paperwork, pre-op evaluations we turned Jake over to the Dr.'s at 7:30 and nervously trudged to the waiting area.  It is not easy to hand over your son knowing what he is about to face.  In basic terms, they were reconstructing his skull to allow the brain to grow.  

We sat around waiting for the first call to let us know that surgery had begun.  It takes a while to prep all the anesthesia tubes etc. and the surgery didn't start till around 9:30.  Around 12, Dr. Danielpour, jake's neurosurgeon, came out to let us know the surgery was going well but they did have to repair a tear in his dura, which is the lining that protects the brain.  We were warned this often happens and in many apert cases multiple tears.  Jake escaped with the one that was fixed immediately in the OR as the craniofacial team led by Dr. Urata began the reconstruction.   All day we waited nervously but comforted by family.  Around 2:30, Dr. Urata came out to let us know Jake was fine and the surgery was completed.  The surgery went well and they really overcorrected the forehead to allow for the brain to grow.  With a lack of the better word, they describe it as "frankenstein-esque".  Jake didn't really have a forehead before and now he will have a prominent one square in nature that will take a few months to round itself out.  Jake didn't have as much bone as they would like making the construction a bit tougher. Similar to a mosaic technique, they craftily worked to put his skull together in its new form.  Slightly less tall and more far forward.  In time Jake will regenerate bone to fill in some open spaces for added protection but his head is very delicate for now.  

Then came the warnings of what we were about to see.   We were warned about the prominence of the forward adjustment and that his eyes will be sewn shut for a few days.  Over the next two days Jake's head will swell so much that his head will grow to a very scary size.  To protect against the eyelids turning over and in some cases eyeballs popping forward, they sew the eyes shut.  As you can guess all of this takes our total mental reserve to process and get through.  

Needless to say we were scared to join Jake in his ICU room and it was slightly shocking at first.  His face has taken a different form some of that distortion temporary swelling and some the overcorrection that will assimilate in a few months.  His eyes are shut and that's a tough sight for any parent to see their baby look so pale, so swollen and whimpering a sad sad cry.   

We have been with Jake all evening and Sam will stay the night with him.  He is on a drip to ease his pain and we just fed him a little apple juice that he gobbled up.  The Dr.'s do tell us the moaning is a medicated state and he isn't awake to feel the pain but somehow that doesn't make it any easier.   

We are so relieved to be back with our little boy but today and the next few days are extremely tough for us to get through as we just want to alleviate any pain from our poor little guy.   It seems unfair how much he has been through in his eight short months but he's a tough guy and we get through these times knowing that all of these surgeries are steps in helping him get better.  

Say a prayer for Jake for a speedy recovery and wish us well as we are scared about this swelling of the head we have been warned so much about. 

Thanks to everyone who has reached out with their thoughts and prayers.  

Lance & Sam

Jake's Head Surgery

Tomorrow is the big day and we start very early in the morning. Jake spent some time in his favorite jumping toy before downing his last bottle and falling fast asleep. We are anxious and nervous but know that the sooner this day comes and goes the sooner we can put it behind us.

Our boy Jake has taught us so much about ourselves, deeply impacting our perspective on life. Jake is such a fighter and he has already faced so much from his syndrome to severe reflux to hand surgery. None of this has stopped him from being a happy go lucky baby with a big gummy smile. Yesterday the boys took their first bath together and Jake was so happy to splash around with his brother and giggled in delight. He is our sweet baby boy and we are sad for what he must face. We know this will only help him moving forward but its hard as a parent when you know you can't spare your child the pain he must face. I'm not sure how we are comprehending what we are asked to do tomorrow. We will face 8 hours of nervous anticipation once we hand over Jake to the surgeons knowing they are operating on his skull and brain. Then stuck in a waiting room praying for the moment he is returned once again to us.

We take this step forward as family minute by minute relying on our love for our boy to get us through. Tomorrow as you go about your Friday, take a pause at any point and just think good thoughts for Jake so that our little fighter has all the ammo he needs to get through this very delicate surgery.

We will try to update the blog tomorrow night so everyone knows it went ok.
With Love,
Lance and Sam

Jake Update

Well some good news today leading into the surgery on Friday. Jake's hands have healed so well that he no longer needs to wear his splints. That makes the Jakester very happy.

Also here's a cute photo of Jake and Luke as they celebrated 8 months!

Jake's Head Surgery

For starters, we want to thank everyone who graciously donated blood on Jake's behalf or attempted to do so. We did find out today he is B+ which means he can receive B+, B-, O+, and O-. Any blood types donated that he doesn't need or isn't the right type will be donated to people in need so thank you all. The blood bank commented on how many people have come for Jake so again thank you for making him a mini-celebrity at the blood-bank.

We had Jake's pre-op appt today with his surgeon and reviewed the course of action. It is very extensive and watching the Dr. draw diagrams for us of what they are doing is very frightening. We know though that it is all for the better and serves two parts. one to unfuse the sutures on the side of his skull that are fused and two to cosmetically restructure the skull to resemble a more normal one which includes reducing the height of his head and establishing bone growth in the front of his head where currently he doesn't have. They will shave a headband like patch of his hair from ear to ear which will serve as their entry point for all of the skull redesign. Next Friday February 1st is the surgery. We have to report to Cedar's Sinai at 5:15 am for a 7:15 surgery time. They have allocated 8 hours for the surgery. He will need to stay at the hospital for 5-7 days depending on his recovery. And his head for the first few months will look more square than normal partly due to overcorrection so his brain has extra room to grow and partly because it takes time till everything assimilates into proper position.

We are nervous for our lil boy but the Dr. does perform these surgeries all the time and we have a lot of faith in Dr. Urata. He will be doing the primary surgery with assist from the neurosurgeon Dr. Danielpour in the areas that affect the brain. This is tough for any parent to go through with their child but we know that this surgery helps Jake tremendously in the long run. I guess we just wish that it didn't all happen so close together as he is just hitting his groove now that he recovered from the hand surgery. We will update everyone more next week but it can't hurt for everyone to start thinking about Jake and sending him positive vibes.

Blood Donation

The Dr.'s have recommended that we stockpile blood in advance of Jake's cranial surgery on February 1st. We welcome anyone in LA who wants to donate blood to do so. Any non-matching blood types or excess will be donated from Jake to other children in need.
If you wish to donate, please contact the Cedar's Sinai Blood Bank at 310-423-5346 and press zero and tell them you would like to donate blood for Jake Reiss and make an appt.
We appreciate your support and thank anyone who is able to make a donation that will help Jake or anyone else in need.