8 weeks old

Well, tomorrow Austin will be 8 weeks old already!  Gosh, time flies!  And tomorrow also marks 4 weeks since Austin's shunt surgery!  Wow!!  This past weekend we noticed that Austin was getting more irritable than usual and then on saturday, his soft spot was very sunken in and the sutures on his skull were more prominent.  I called the surgeon to see if maybe he was over-draining again.  She said that she was not inclined to turn it down again since it was already on a low drip, and wanted us to call her office on monday to set up a cat scan to see how the ventricles looked.  He seemed to be dehydrated again so I started giving him pedialyte again.  Well yesterday, Austin was pretty much back to his usual self and today he was even better.  His soft spot was still sunken, but not as much as it was on saturday. 

So this morning I called the surgeon and we went to her office this afternoon.  She took one look at him and said he looked great.  He is still dehydrated, but the skull looks great.  She said that it was just separated so much because of all of the fluid, that now the fluid is decreasing and the head is coming together nicely.  Huge relief!  Next week we head to the pediatrician for his two month check up.  Seems like we have doctors appointments once a week at least, between him and Jake, but I don't mind.  I'm used to it. 

Austin loved his bath today too for the first time.  He was so cute, just stared at me and enjoyed it with no crying!  Afterwards, he was a little happy head for a while.  I scrubbed off a bunch of the dried blood around his incision.  It looks much better now and he is really starting to grow into his shunt. 

Here's a cute pic of Austin checking out Holly...

Just hanging out...

Special day for Austin

We were so blessed on sunday to celebrate Austin's Baptism.  He had a special day filled with family and friends. He is getting so big...didn't even fit into his 0-3 month Baptism outfit!  Thanks to all who shared the day with us and special thanks to his Godparents, Aunt Natalie and Uncle Greg!! 

What is a shunt and how does it work??

So we've gotten a lot of questions lately about what an actual shunt is and what it looks like.  And seems like everyone asks "How long will it stay in for?" Well the answer is...forever.  Austin will always need a shunt because his body will always produce CSF (cerebrospinal fluid) and he will always have a small aqueduct that won't allow for the CSF to properly pass throughout his brain and body.  So, with all of that said...here is what a shunt is...

A shunt is a narrow tube that allows excess CSF that has built up inside the skull to drain out into another part of the body (in Austin's case, the abdomen).  To drain excess CSF, shunts are inserted into an opening or pouch inside the brain called a ventricle, just above where the blockage is that is preventing the CSF from flowing properly.

All shunts perform two functions.  They allow CSF to flow in only one direction, to where it is meant to drain.  And they all have valves, which regulate the amount of pressure inside the skull.  When this pressure becomes too great, the valve opens, lowering the pressure by allowing excess CSF to drain out. 

Austin has a programmable shunt, which allows the shunt to be programmed for his individual needs, which could/will change as he gets older. 

A shunt has four main parts:  Upper catheter is the top most part of the shunt.  It is a small narrow tube that is inserted into the ventricle inside the brain that contains the CSF.  The Reservoir is where the excess CSF is collected until it drains into the bottom portion of the shunt.  The Valve controls how much CSF is allowed to drain from the brain.  And the lower catheter is the bottom most part of the shunt.  It is a narrow tube that carries the excess CSF into the part of the body where it will be absorbed.  In Austin's case, the belly.
                                       
Austin has a small (about an inch) horseshoe shaped incision at the top of the right side of his head.  Then you can see the tubing of the shunt, which I'm told will be less and less noticeable as he gets older (that doesn't matter to me at all...as long as its working!! :))  He has another really small incision where the lower catheter begins and then goes down to his belly.  You can see the tubing going down to about his neck and then it disappears down his neck and down the front of his chest and stomach.  He has another incision right above his belly button.  When he cries and fusses, you can sometimes see the tubing going down his body, but otherwise you can't see it.  And he's not limited to what he does physically.  Maybe someday he may have some limits, but we already have one son who can't play football or wrestle, so its not a big deal to me if Austin can't do those things either.  Kevin and I actually joke all the time that our sons are going to be the "artsy" kind of kids...not the sports kind.  Haha, nothing wrong with that. 

Hope that gives you a better understanding on what Austin's shunt is all about.  Like I said, I'm still learning all of this myself, but its good to have some basic knowledge on how it all works. 

You know the saying, God works in mysterious ways?  Well, in my case, there is no denying it.  What family can say they have two kids with two different medical issues, and two different foreign objects surgically implanted in their heads??  Its just craziness.  But thank goodness for technology!!  (In fact, there are still some concerns that Jake's cochlear magnets can affect the program of Austin's shunt since that is magnet too!  But its very hard to keep a 3 year old away from his 7 week old brother!!!)  Ahhhh the things we have to worry about, not many people have walked in our shoes.  I wouldn't trade it for the world though!  Love my boys...

Here is a shot of how Austin's shunt looks...(its not as swollen now as it was in this pic last week)

7 weeks already

Yes, hard to believe that Austin is 7 weeks old already.  Its been a few weeks since I've last posted.  We've been busy.  And I'm happy to report that we've just been busy with "normal" things.  Nothing major to report other than Austin continues to do great.  He had his two week post op appointment last week and everything looks great.  His incision is healing very nicely and he just acts like a normal seven week old.  Can't even express the miracle and blessing we have been given with him.  I read back to my earlier posts after his diagnosis and I get sick to my stomach.  I wish I had known back then what I know now and didn't have all of those months of worries.  But I continue to put my faith in the Lord and have seen all that he can do and will continue to do for Austin, Jake and the rest of our family.   Blessed beyond words. 

We have decided to hold off on the stem cell infusion for now.  We were supposed to be going this month, but its a huge financial burden and since Austin is doing so well, we feel that it does not have to be a rush at this point.  Austin will have a MRI in August to see how his brain is fluffing out since the shunt was placed and if at that point there is anything alarming, we can always call Duke and get the infusion scheduled.  I still really believe that it can only help Austin in the long run, but I'm ok with waiting for now.

I have noticed that Austin likes to keep his thumbs tucked in most of the time.  I talked to Jake's physical therapist about this and she suggested that we do some infant massage with him, to get him to loosen up.  So now I just have to learn how to do it. 

Jake continues to be obsessed with Austin.  He just loves him so much.  And he's so cute with him.  The first thing he says when he wakes up is "Where is Austin"?  And the last thing before he goes to bed is to check and make sure Austin is ok.  I love it.  Here are some snaps I got tonight of the boys doing their daily "tummy time"...haha...

Paranoia is kicking in hardcore!

The days are just flying by here.  Feels like just yesterday that I was in the hospital with the lil man and now here we are, almost six weeks have gone by.  We had a bit of a set back on monday with the shunt.  Austin had been very irritable for days and just got worse to the point that he was inconsolable sunday night and monday morning.  We went down to the surgeon's office, and found out that Austin's shunt was over-draining and he was dehydrated.  So his drip was turned down and we had to give him Pedialyte for a few days.  Now he's back to himself again thank goodness.

Brings me to the paranoia in the house.  Its out of control.  We worry about every little thing with him.  We were told all of things to look for which could cause concern with the shunt not working properly, however its hard to know if Austin is exhibiting normal newborn behavior or if it is something more.  I hate feeling like this.  And as much as I worry or not worry about things, Kevin is one hundred times worse than me, so we don't balance well.  I anticipate the paranoia to remain for a long time, but hoping that it subsides at least a little otherwise we are all going to go nutz!!!  I have to keep reminding myself that Austin is doing well and I am thankful everyday for my little miracle. 

His incisions look better and better everyday and you can tell that he is feeling better.  He is putting more and more weight on his right side of his head.  We have been doing tummy time and he is doing great.  He can pick his head up and turn it from side to side.  He even rolled over twice from stomach to back.  (Not on purpose of course, but because he was so worked up and upset from being on his belly that he arched himself over).  Pretty amazing stuff considering Jake didn't even hold his head up until he was 5 1/2 months old!  Jake loves to do tummy time with Austin too and is such a great help with diaper changes, baths and getting Austin to stop crying.

Here are some new pics of the little guys....

Events of this week...and guess who's ONE MONTH OLD!!!

Austin is one month already and weighs a whopping 9 pounds, 9 ounces!!!  Time has gone so fast.  I'm happy that surgery is over and done with.  Surgery was scheduled for this coming monday, May 16th and I figured I would have all weekend to prepare myself (and him) for our stay at the hospital.  But, the past two weeks we have been very paranoid over every little thing that Austin has been doing (or not doing).  We have made ourselves worried sick about him and as much as wanted to enjoy him, we were just always worried.  Our poor pediatrician seemed to get a phone call from us every few days.  This past monday night, we once again called our pediatrician because Austin's head circumference was measuring 39.5cm (it had gone up a whole centimeter in a week!) and we also began to notice that his veins in his head were more pronounced.  Thankfully, our pediatrician, once again, told us that he was not concerned and that because Austin wasn't exhibiting any of the more common side effects of hydro (like bulding soft spot, irritability, lethargy, bulding veins), he felt that surgery on monday remained the best course of action.  This time though he told us to just reach out to the neurosurgeon the following morning and let her know what our concerns were.

So, Kevin and I went to sleep feeling confident that nothing was overly alarming with Austin and that waiting another week for his surgery was not going to have a permanent negative impact on him.  Tuesday morning started off normal, I took Jake to school, stopped at the pharmacy to get some Mylicon for Austin (which they didn't have of course) and then headed home.  I left a message for the neurosurgeon around 10am and decided to leave a message for the nurse around 10:30am when I hadn't heard back.  But the nurse answered, so I told her what our concerns were.  She asked me a bunch of questions...was his soft spot bulding...NO....has he been eating, peeing and pooping normally...YES.....has he been sleeping alot....YES, BUT JUST NORMAL NEWBORN SLEEPING....was he more irritable....NO, BUT IRRITABLE FROM BEING GASSY.  She then told me that she would run it by the surgeon and see if the surgeon thought it was fine to wait to see us on monday, or if maybe the surgeon wanted us to come into the office sooner than that.

Ok, no problem...so I went back to my activities and began to go through all of the billions of clothes that Austin and Jake have that they could now fit into and could be washed.  The house was a disaster, but I didn't have anywhere to go this day, so I figured I would do much needed laundry, vacuum, and tidy up throughout the day. 

Around 11:30am, the nurse calls me back.  She tells me that the surgeon feels that we should take Austin straight to the Emergency Room and she would like to do the shunt this day.   OMG!  I instantly go into panic mode...I haven't even showered yet, let alone have any clean clothes for myself or the baby and still have to pack all of the things I can think of for our 2 night stay at the hospital.  Kevin gets home in record time and we leave the house at 1pm after all is said and done.  Two miles from the hospital, we hit major traffic.....5 lanes on the highway are going down to 2....so we sit.  Austin, mind you, has not eaten since 10:30am and now is screaming hysterically in the back seat.  He refuses to take the pacifier, so poor thing is left to just cry and cry and cry while we sit in stopped traffic.  FINALLY we get to the emergency room at 2:45pm.

From there, things just moved so fast.  We met with the surgeon briefly before surgery.  She says "So, he wasn't acting himself today and was just sleeping alot?"  I say no, thats not what I said to the nurse.  Then she says "And you said that his veins appear to be buldging?".  Again, I say no.  We tell her that we spoke with our pediatrician the night before who told us to call her.  She asks what the pediatrician said about him and we tell her that the pediatrician was not concerned.  Kevin and I then put two and two together and realized that the surgeon was given some misinformation about how Austin was appearing that day, hence the rush to get him to the hospital.  But since we were going in for surgery in 6 days anyways, it made sense to just move forward with the surgery on this day.  (The surgeon later would explain to us that Austin's veins were more pronounced than they should have been and when she did the surgery, the fluid was building and beginning to cause pressure in his brain).

Austin was taken into surgery at around 4:30pm.  We are told that the surgery itself only takes about an hour, but with prep, it would be about two hours before we would see him.  We are taken up to the PICU waiting area and Kevin insists on ordering Chinese food (because he found a menu that says they will deliver to the hospital and he is starving!).  Around 5:30pm, Kevin heads down to meet the delivery guy and I take out a magazine.  Two minutes later, I look up to find the surgeon coming in to talk with me.  I panic because its only been an hour.  She quickly calms me down and tells me they are all done, Austin did great, and that we would be able to see him in a few minutes.   Phew.  We were taken into the room five minutes later. 

Austin did awesome at the hospital.  He was groggy and cranky and slept alot, but he ate and his vitals were perfect.  We were told all along that he would be staying two days, so we were shocked when they told us the evening of his surgery that he would most likely be going home the following day.  And, wouldn't you know it...we were walking out of the hospital at 5pm on wednesday.  24 hours in the hospital...thats it! 

To top it all off, we are sitting in the hospital room waiting for Austin's last dose of antibiotics yesterday and I'm flicking through the TV channels and stop on "House".  One of the doctors is sitting with a patient and they begin to recite a passage from the Bible about how God puts you through trials and tribulations to see if you will put your faith in him that he will help you get through it.  And once you give your faith to God, true miracles will occur.  WOW.  Thats the story of Austin's life.....

I went searching for that passage in the Bible and on the internet, but couldn't find it, but thought that there was a reason I turned on the TV right at that moment. 

Austin continues to amaze us all everyday!  He is such a miracle and we are reminded of that every second of his life.  And this is just another instance of how amazing he is.  So, we weren't even prepared to have the surgery so soon, but within a day and a half, he had it and is already back home and pretty much back to his normal self!

God is good, God is great, and I have all the faith to know that Austin is going to continue to amaze all of us everyday of his life!!!  We are so blessed....

And again, many many thanks to all of you who have continued to pray for him and our family.  He hears your prayers loud and clear and has granted your requests and will continue to grant them.  THANK YOU!  We pray that Austin's body will work in perfect harmony with the shunt and he can resume his life without extra fluid buildup!!

Resting peacefully in the PICU

Austin is resting peacefully now.  Surgery went very well yesterday.   He was in and out in a little over an hour. Just about everyone we have encountered has said how routine this surgery is. Kinda crazy to say that about brain surgery.  Im just glad its over.  We should be heading home later on today.  Thank you for all of the thoughts and prayers.  I cant say enough how good our Lord and God are...

Please keep the prayers going for a safe and speedy recovery.