Big Day

Well today we had an evaluation at the hospital for both boys in regard to development something that is required for all babies that spend time in the NICU. Both boys did very well especially considering that instead of 9 months they consider them to be 8 months due to their early birth date. The best news was that Jake ranked at 10 months cognitively which we consider a huge sign so far in his development. Then his surgeon stopped by and took a look and felt Jake is healing very well and is pleased. No more follow up necessary for 5 months. Go Jake Go. The only thing stopping him now is his next hand surgery looking to be May 9th. That's the scoop and Jake continues to surprise and make us happy. A few more weeks and he can can resume the tummy time and start to crawl like Luke.

Crying It Out

Sam and I decided to let Jake cry it out a bit as he has been laughing and in good spirits all day, and even exhibited the ability to sleep on his back in our bed. So last night we decided to take the plunge and let him cry it out and see if it worked like last time. Very hard to sit through but after 20 minutes, Jake surrendered and went to sleep. And sleep he did. 4 straight hours. He did awake again but did fall back asleep again for four more hours. We hope we have turned the corner and Jake will now realize its time to get back to basics and get his sleep on.

He was laughing and smiling this am so I don't think he was too mad at us but we'll have to play it by ear. Overall he is doing very well and babbling away.

Doing Well

Jake has been doing well healing and the swelling has been going down. Here's a new photo.

Happy Valentine's Day

Check-Up

Jake met with the neurosurgeon today for a post-op. He was so funny giggling and laughing while waiting for the Dr. He got a good report and the Dr. was impressed that he seemed back to normal. We informed him Jake was almost back to normal, due to the sleeping snafu. We can wash his stiches now so that should start the process of dissolving and in two weeks time we may be able to start letting Jake cry it out a bit more and get him back on track. Jake got a souvenir Cedars Sinai beanie from the Dr and of course had to sport the new look right away.

Jake and His Gma Carol

Sleepless in Encino

Well, the only thing really bothering Jake right now is his sleep pattern. We have gotten at most 2 hours a night this whole weekend. Jake keeps waking up and he has found himself in our arms, our bed, his stroller, and his crib. The stroller is still the front runner but we are tired to say the least. His eating has come back slowly but surely so hopefully sleep will follow. I feel like those moments in dreams when you go to run and no matter how hard you try you are in slow mo. Slow mo is how I feel. Jake is down to only taking tylenol so he has come along way and we hope when he is comfortable he will sleep. We just hope it isn't because he was sleeping when we handed him over to the Dr.'s and then he woke up with a splitting headache and couldn't see. Funny enough he was wide awake at 3am and thought he would be cool to play with mom's face. Hard to be mad when you look over and you son is flashing a giant smile even when its the middle of the night.

Wish us luck.
Jake has a follow up with the neurosurgeon on Tues and then another one a few weeks later. Now its just time and healing.

8 days later

Well, Jake fans a week has come and gone. Dr. Urata came to the house, talk about service, to take a look at Jake and informed us that Jake is doing well. Of course he had to make it through an extensive list of questions we had prepared for him to answer. Overall, the surgery went very well and Jake is healing and will need some time. His problem sleeping currently is expected and of course we hope with more time he will grow more comfortable. Right now the car seat in the snap n go stroller appears to be his favorite choice. I think he just likes his parents pushing him around the room at all hours of the night. I felt sad for Jake this morning as he watched in his brother jump in the jumpee toy we have and that was one of Jake's favorite. Jake isnt allowed to play in that one for awhile and I saw a little envy in his eyes watching Luke have at it. Good thing we only have a gazillion toys for him to choose from in the rest of the playroom. Today he got a nice visit from Amy and Melissa which enabled exhausted parents to take a little late morning nap. Apparently this beautiful day we are having 80 degrees led to a walk and a little nap. His granparent's Dan and Carol just arrived so Jake is very popular already today. More updates to come soon. Root for sleep and fast healing

Jake Hospital Pictures

Below are some photos of Jake from the hospital in reverse chrono order.

LEAVING THE HOSPITAL




DISCHARGE DAY



BROTHERS REUNITED


DAY AFTER SURGERY

Jake at Home

Well, its great to have the lil guy at home. Yesterday brought my personal favorite moment to the surgery experience, the cutting off of the hospital band that signifies that I am with Jake. Cathartic yes, and another item for his scrapbook. Jake is taking a bunch of various meds and its hard to keep them all straight let alone get him to drink them all. He is in good spirits and happy to be home for the most part. Bringing him home has the expected challenges as he requires extra delicate handling and we can't really put him down on the play mat etc. I am happy the boys can see each other again and hopefully this is nice for Jake and a sign that he is returning back to all things familiar. Yesterday evening, Sam gave Jake a bath and it was a tough task given that we can't get his wound wet but only like mothers can Sam found a way to even wash his small bang area just in front of the wound. I, like only fathers can, found a way to break part of his crib when we attempted to adjust the height. No need to fret is should be a minor repair. We created the best simulation possible to the hospital bed for Jake complete with foot pillow and raised area for his head. After his nightime bottle, we got Jake to sleep actually pretty easily which is tough because you can only hold him a certain way giving his head support and it is a difficult transition to lower him into the crib. Most of the time it takes two tries when he is sleeping to place him to bed without waking him up.

Then came the some of the difficult moments of the evening. Upon waking up in his crib, Jake now belts out a new cry that is heartbreaking. It is bloodcurling and Sam and I are lucky we didn't trip over each other trying to get to him as fast as possible. He does calm down quickly once in our arms but it is trying to say the least. We were up every few hours with him with the toughest stretch from 12-3 when we couldn't get him to fall asleep. We had to hear that cry multiple times and I hope we can relieve him of this panic/pain etc so that can end. This morning, Jake was calm and pretty happy once he ate. I got a giggle out of him while he ate prunes which was great to see. Hopefully he will have a good day and we'll see how he handles tonight.

Super Tuesday

Well not much else to say. Jake has been discharged and we are now home. Jake was laughing today and now is fast asleep in his car seat. We are thrilled to be home and its great to see our boy return back to himself again. The swelling will take some time but he already has healed a lot and we look forward to his continued healing. Another hospital visit finished and another chapter put to bed.

Can't keep a fighter down

Well folks, little Jake has decided enough of this nonsense.  This AM the swelling went down so much,  the Dr. decided we could take out the stiches in his eyelids and remove the bandage on his head.  A little while later, Jake opened his eyes and looked at his parents for the first time since Friday. His eyelids are swollen but he could open them up a bit.    His head now has a headband like shaved spot from ear to ear where his hair is shaved complete with zigzag stiching.  The stiching is performed in this manner to allow for the hair to grow back.  For the time being Jake is setting a new hair trend with a clump in the front and his hair in the back.   Jake regained a lot of energy and we played with him all day.  The highlight being when the brothers were reunited today as Luke visited his bro in the hospital.  The two were so happy to see each other and we put Luke in bed next to his brother.  They held hands and looked at each other.  And then the moment we've been waiting for since the surgery began, Jake flashed us a smile.  It's amazing what a smile can do as therapy to all we have been through.  Our little boy is back emerging from the pain to resume more of his normal self.  He has healed so quickly the dr.s want to release him from the hospital tomorrow.  It's a little scary but we are amazed at the turnaround.  All good things to report and hopefully the next post will be us leaving the hospital.  

Recovery on Super Bowl Sunday

Today had some interesting developments and certainly put things in perspective on a day when all that used to be thought about was what should I eat, whose party should I go to, who will win the game. Instead, Jake took center stage as he should and the trivial things I used to worry about are just that trivial.

Thankfully, Jake didn't get any more swollen from yesterday and his doctor felt like yesterday was really bad and that Jake probably reached his peak swelling early on. Today, Jake appeared to lose some swelling which provided some relief to us. Sam said he had another rough night and one of the nurses thought that perhaps rather than pain he could be agitated from not being able to open his eyes. We gave him some adovan to relieve any anxiety and it seemed to help as he rested most of the day and even regained some of his appetite. At one point during the day, he woke up and was moving his hands more and seemed to want to move his eyes. I spoke calmly to him to try to relax him and he ate some more and did calm down with his second dose of adovan. His eyes have reduced in swelling so we hope that perhaps tomorrow the dr. would want to remove the stiches from his eyes. We'll have to see. The good news Jake is out of the Pediatric ICU and now in a regular room at Cedars. We'll wait to see the outcome of tomorrow's report but today was def. a step in the right direction as the swelling starting to ease and some appetite is back. I found it nice that the Giants won tonight's game as it's great to have positive outcomes when no one expects it. Anything can happen and the Giants proved that. I think lil Jake liked the underdog winning and he will soon learn to relish that role.
More to come tomorrow as we put another day behind us.

Recovery Day 2

No other way to put it but today has been a tough day.  Sam had a very rough night up most of it with Jake as he cried throughout the night.  I came to the hospital early to relieve her so she could get some rest and go see Luke.  I spent some time with Luke at home before coming to the hospital which was nice as he is a cheery sight for sore eyes.  Its hard for us to not see Luke  and we think he misses his brother and wonders where he is. 

Once at the hospital, Jake's swelling had gotten much worse from yesterday.  Our poor boy's head has multiplied probably to twice its normal size and his eyelids and face are so swollen and turned purplish black.  It is very hard for us to look at him with his eyes sewn shut but based on the immediate swelling we can tell why the dr.'s do this.  

I met with the Dr. rounding this am and he was pleased with the surgery and did want me to know that Jake is completely stable and all signs are great.  The only thing we have to contend with is the dramatic swelling.  This will continue to get worse and worse probably through Monday.  

I was able to hold Jake in my arms this am and I do think it helped calm him as he was cradled in my arms in his favorite position.  Jake ate a little from his bottle but we have the IV bringing him fluids as eating isn't a top priority for him right now. 

A few good things happened today...  they removed his arterial iv line and his catheter so two less wires occupy his body which pleases us.    They also stopped his continuous morphine drip and give him it manually but its a step in the right direction for the healing process.

But with every hour that goes by our boy swells more and more and it is so difficult to see our little angel look so swollen and uncomfortable.  He also is developing thrush again as a reaction to the antibiotics similar to Boston.  We caught it right away and he is already taking medicine to counteract it.  If you don't remember, thrush is a viral infection that causes tons of little bumps to appear all over his tongue and throat that cause discomfort not what little Jake needs right now. 

Jake did get to visit with his grandparents and godmother today so hopefully that made him a little happier to hear their voices.  We put a few photos up of Jake and Luke so the staff can see Jake's smiley face and know what the sweet boy hidden beneath all of the swelling really looks like.  

Jake is well enough to transfer out of ICU to the pediatric ward but there aren't beds available so he probably will move down there tomorrow pending availability.  

We have had a tough day and at times wonder how we get through all of this.  It is heartbreaking to watch our little boy deal with this pain and swelling.  With each passing day and post to the blog we get one day closer in the healing process and putting this behind us. Our love for Jake keeps us strong and probably the only way we can deal with this surreal experience.    

Once again, thanks to everyone who has reached out and offered their support.  Its time for the exhausted parents to rest and lets hope tomorrow isn't overwhelming.

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