Tuesday, April 26, 2011

To Shunt or Not to Shunt...that is the question.

And the answer is...TO SHUNT!

Austin took his first trip into the city yesterday to meet with a neuro-surgeon for a second opinion regarding if he should have a shunt or not.  This is the same surgeon who we met with when I was 20 weeks pregnant, and we really liked him.  He is also one of the top surgeons in NYC and has a really good demeanor.  Our appointment was at 3pm and we weren't seen until close to 5pm.  Austin was a trooper the whole time and just hung out in the waiting room. 

The surgeon did a quick exam of Austin and looked at his MRI images from when he was born.  The surgeon said that he thought Austin looked great, his head looked great and he didn't see any cause for immediate concern.  He also said that had he not seen Austin's MRI scans, he probably wouldn't have even known that Austin had hydrocephalus.  He indicated, however, that Austin will need to have some form of surgical treatment for the fluid, as it is significant  He went over the two options....a shunt....or an EVT (which is an operation where a hole is basically drilled into the 3rd ventricle to allow for the fluid to drain out and back into the head where it should be.)  Obviously the EVT is less invasive and means that Austin would not have to have a foreign object (shunt) in his body.  However, not many surgeons do the EVT on a baby this young because the success rate is only about 40% as baby's heads are constantly shifting and the hole usually closes up.  The surgeon went on to say that it was our decision ultimately which option we choose, but that if we did choose the EVT, we would have to keep in mind that we may be back and forth to the hospital with a failure, which he often saw with babies this young.  And while he wouldn't make the decision for us, he did end up saying in so many words to get the shunt put in by the surgeon that we have it already scheduled with.  He said that there was no need to keep coming back and forth to the city and talked highly of our current surgeon. 

On the ride home, Kevin and I were on the same page.  We are going to go forward with the shunt for Austin.  We want the fluid to be gone and with the EVT, the fluid would just be regulated.  And the shunt failure rate on a newborn is a lot lower, 10-12%.  Yeah, its not ideal for Austin to have the shunt the rest of his life, but we had already prepared ourselves for this.  And now we can move forward knowing that we made the best decision for him.  We will just continue to pray that his surgery goes smoothly and that he does not have any type of shunt failure.

So, Austin's surgery is scheduled for May 16th (got pushed up a day from the 17th).  He will be in the hospital for two days and then we can begin our "fluid free" life with him. 

And so I shall leave you with this shot...which just puts a huge smile on my face when I see it...

Happy Easter!

Austin's FIRST Easter!

Tuesday, April 19, 2011

Guess who's 1 week old already!

Hard to believe that its been a week already since the lil man arrived.  The week went very fast.  We are starting to get into a routine now, which is nice.  As of now, surgery for Austin's shunt is scheduled for May 17th.  We are going for a second opinion on monday, but it does appear that as of now, Austin will most likely need a shunt.  We picked up a copy of his MRI from the day he was born.  I peeked at the images today and there is a significant amount of fluid, which we anticipated....but there is also a significant amount of brain, which in all likelihood will expand once the shunt is put in. 

He is still doing great though.  Kevin and I find ourselves worrying about all the small things that he does or doesn't do just because of his diagnosis and us being paranoid.  We have to constantly remind ourselves that Austin is not going to be just like Jake and vice versa.  All babies are different and it has nothing to do with Austin's hydrocephalus. 

Anyhoo....I put Austin in the swing today for the first time.  He loved it (unlike Jake who absolutely hated it!).  Here is a little clip...

And here is the proud big brother...who is getting more and more used to sharing time with his lil bro...(and it helps that I'm starting to feel better so I can spend some more time with him)

Saturday, April 16, 2011


Hi all....just a few pictures of the little man.  He is doing great.  Went for our first pediatrician appointment today.  At birth, his head circumference was 38.5cm and today it measured 37.25cm.  We are going to go weekly to the pediatrician for a head circumference check for the next few weeks.  As of now, shunt surgery is scheduled in a month, but anything can change in a month.  Lets keep those prayers going that his head circumference and the fluid continues to decrease on its own.

Our biggest challenge these past two days being home is just adjusting to life with a newborn who requires a lot of attention, as well as a 3 year old who also wants a lot of attention.  And I can't do anything physically for a few weeks, so all the burden has been falling on Kevin.  Jake is starting to warm up to Austin.  He helped me feed him this morning and then held him a few times.  He's the proud big brother until Austin starts to cry and then he can't hear his Barney movie...then he's not so happy with his lil bro. 

Can't thank everyone enough for all of the prayers, thoughts, and concerns.  Faith is so powerful and we have seen many blessings since our little miracle arrived. 

Thursday, April 14, 2011

He's here....

I can't even begin to describe how we have felt these past two days.  Austin arrived kicking and screaming loudly at 1:28pm on tuesday weighing in at a hefty 8 pounds, 3 ounces.  We got a call that morning to come to the hospital a little earlier because they had an opening.  Kev and I were a nervous wreck the whole time at the hospital but things went very smoothly.  When Austin was born, he was quickly whisked off by the NICU team for a once-over before being brought back into the room for mom to take a quick peek at him.  Then him and daddy went up to the NICU.  I went to recovery and had to see Austin the rest of the night through pictures from daddy. 

The neonatologists took one glance at him and were like "hmmm...this is not what we expected".  Austin looked normal and was acting completely normal.  His head circumference was still within the normal growth chart (at the very top of it, but still on it nonetheless!).  He went for a MRI that evening and it showed extra fluid in the ventricles, but nothing overly alarming.  The doctors updated the neuro surgeon and it was decided that Austin would not have surgery on wednesday morning for a shunt. 

I finally got up to see my lil man at 5am on wednesday morning.  He's gorgeous.  All the nurses didn't even know why he was up in the NICU.  He didn't need any medicine, oxygen, IV or anything.  The good news continued on wednesday as we met with the neurosurgeon.  She said that at this point, it does appear as though he will need a shunt, but there is no point to rush it and she will see him on an out-patient basis and maybe schedule the surgery in a month.  She thought he was doing great otherwise and wasn't showing any signs of neurological issues.

Today, we met with the neuro surgeon again as well as the neurologist.  And again, were told how well he was doing and how he really has surprised a lot of doctors.  From all of his ultrasound scans, this was not the baby everyone had anticipated.  The neurologist even went as far to tell us that he didn't even know if Austin would need a shunt at all and that he would do another MRI in a month and maybe they would talk about options other than a shunt.  He suggested maybe getting more opinions from the previous consultation neurosurgeons, as they might have different opinions looking at the new MRI images. 

They also did an echocardiogram to follow up on the heart regurgitation.  It came back perfect!  No concerns with the heart. 

And to top off all of our good news...Austin passed his newborn hearing screening with flying colors!!! 

So, today at around 4pm, Austin "graduated" from the NICU and joined mommy downstairs in the regular maternity ward!  And.....both of us are going home tomorrow!!!! 

Can't even begin to tell you what a true miracle this all has been.  We are not out of the woods by any means but I know for a fact that all of the prayers out there have given us this outcome.  Please continue to pray for him....such a little blessing!!! 

Wednesday, April 6, 2011

Still on Track....

Stayed up until midnight last night making sure my bags were all packed and ready to go just in case they decided that they wanted to get Austin out after my ultrasound today.  I knew that if I didn't get everything ready, then he would definitely be coming early....but I really felt as though we weren't going to see anything drastic today.  And, as you can guess.....we are still on track for delivery on April 12th. 

I was doing some last minute errands yesterday during my lunch break.  Well, I stopped in one store and it was raining out and with all this extra weight in the front....wham!....yep, fell right on the tile floor!  Landed on my knees and my hands broke my fall.  Boy did I fly up to standing position as fast as I could, as two employees yelled "OMG...are you ok??" and started to run over to me.  I was fine....just a little sore and a little embarrassed.  And even though I didn't hit my stomach on the floor or anything, I definitely was feeling a little tight as my day went on and after sitting at my desk for a few hours, both my legs were beginning to cramp up.  Seriously.....can't I catch a break??  Today I was fine by the way....

At any rate, so I was excited to actually have this ultrasound today, just to make sure everything was fine after the fall (even though I knew it was because Austin has been moving and kicking like normal!)  But this was the first ultrasound that Kevin did not attend, so it was nerve-wracking being there by myself.  Ultrasound itself wasn't bad.  Got to see Austin "practice breathing" which was cool.  I haven't posted any actual measurements of his ventricles in a few months, but people have been asking me, so just to put things in prospective, here goes. 

At 20 weeks, Austin's lateral ventricles were measuring 19mm (normal is up to 10mm) and his third ventricle was measuring 5mm (normal is 3mm).   On friday, at 36 weeks, his lateral ventricles were measuring about 29mm on each side and his third was a little over 8mm.  Today, at 36 weeks 5 days, one ventricle jumped to 34mm, the other stayed about the same, and the third was almost at 9mm.  Keep in mind that all the measurements are relevant to how the pictures are taken and how the technician measures them.  Overall, things have increased relatively slowly, which has been good...about 1-2 mm a week.  So, I was a little upset/surprised that we are now measuring in the 30's on the one side.  However, the technician did a side shot of his head and I saw some substantial brain in there, so I was very happy!  And the overall ultrasound did not raise any concerns to move up the delivery date....so April 12th here we come!!!! 

One more OB appointment to go on friday; and then my pre-op bloodwork on monday and then he'll be here!  I can't believe we are in the home stretch.  I've been waiting for this for so long, but I'm nervous.  There is only so much I can prepare myself, but I'm trying to do the best I can over these next few days.  I'm even working up until monday afternoon, just to keep myself busy (and I want more time with him after he's here). 

Jake continues to be super excited.  I have a note from his speech therapist yesterday saying that when she asked him about Austin coming, he said "Mommy's going to the doctor, she's gonna lay down and pull her shirt up.  I'm gonna see mommy in couple days.  I'm gonna stay with gramma".  He's also been saying that the doctor is going to cut me and I'm gonna say "OUCH".  He's too funny.  I'm gonna miss my lil buddy when I'm in the hospital...it will be the longest I've ever been away from him!!!  Can't wait to be able to hold both my lil men...

Saturday, April 2, 2011

10 days to go...

Its hard to believe that its been 16 weeks since we got the diagnosis.  I'm happy to report that I'm in a much better place now than I was four months ago.  I don't need to keep telling myself that things will be ok ....I'm so over that.  I know that Austin is going to be ok and I know that we are so blessed already to have Austin, as he has already taught us so much! 

So for now, my anxiety revolves around this whole "c-section" thing.  I know its so common now and women have c-sections all the time, but just the thought of having my stomach cut open while I'm lying there helpless on the table just scares me.  Gosh, I didn't even have an epidural with Jake so I don't even know what that feels like!  I can't seem to get what is going to happen wrapped around my head.  But nonetheless, it has to be done and its whats best for Austin, so I'll get over it. 

I got a call a few days ago from a parent who got my information from the neurosurgeon.  She relayed that her son was just born with hydrocephalus in December and is doing very well.  Her story was not exactly the same as mine (her son wasn't diagnosed until 36 weeks along), but his ventricles were measuring slightly larger than Austin's are now.  It was nice to talk to her.  She was very positive and offered some good advice to me.  It has been so important to me to talk with other parents who have been through or are going through the same situation.  There is only so much everyone else can say to me who have not walked in my shoes.

Yesterday I had an OB appointment.  Pretty uneventful other than the fact that I found out which doctor is going to be doing my surgery...of course its someone I had never met.  And they couldn't get me an appointment next week with that doctor, so now I won't even get to meet her until we are in the hospital.  Ridiculous.  In the afternoon, I had another ultrasound.  Also pretty uneventful.  As anticipated, the ventricles had grown and his head circumference got bigger...no surprise there.  His abdomen was also measuring bigger and the tech made a comment that Austin was going to be a big baby...again, no surprise there.  Perinatologist came in after the scan and told us that he didn't see any reason to move the surgery up at this point, but that he did want to see me one last time next week to see how much the fluid had increased in a shorter amount of time.  He said that if next week's ultrasound showed something drastic, then he would look to move up the c-section to that day or the day after.  Kevin and I thought we were done with ultrasounds, but agreed to come in one last time.  So, we are set for next wednesday, April 6th. 

Jake and I made a "Countdown to Austin's Arrival" sign tonight.  He got to pick where he wanted to hang it and then proudly stood next to it for a picture.

We're going to countdown the numbers every morning until Austin makes his appearance.  Hard to believe that in less than 10 days, he'll be here!  Can't wait....