Tuesday, March 15, 2011

Weekend Festivities and More

This past weekend Elliot took his first trip...and not to Children's in Denver, but to Steamboat Springs, to participate in the Snowshoe HydroWALK and to meet the Updike Uncle and Aunts.  Steamboat was great.  We were able to stay in a ski house with the entire family and relive some old family times (yes, we played the game of Life and it may have lasted 3 hours, and Chris and Marissa played a rip roaring game of Jenga...).  Friday night Byron and I set off to dinner with Elliot to meet up with 4 other families that had kiddos with Hydrocephalus.  Three of the kiddos were between the ages of 5-7 and then an 18 year old girl.  It was great to see other kids with Hydrocephalus and to witness in person how amazing they all are doing.  All their parents were wonderful as well.  Byron and I were given some great advice and comforting words.  The 18 year old girl, Jordan, has had 19 brain surgeries in her short 18 years and through all of that she is now in college at Denver University on a full ride.  Its just reassuring for Byron and I to meet all these families and hear their stories.  It makes our adventure with Elliot feel a little more "normal", at least "normal" as far as babies with Hydrocephalus go.

Saturday morning was the Snowshoe HydroWALK.  100 people showed up for the event and around 40,000 dollars were raised for research.  A big thank you to all of our friends and family who donated!  Although it was only a 3K Snowshoe, it kicked my BUTT!  I think I now understand why they say to take it easy for 6 weeks after a C-Section, but I'm stubborn, so I still had to learn the hard way. It was a lot of fun and I'm so proud that all my siblings came to the event to support their brand new nephew, its means the world to us.  The rest of our trip in Steamboat was full of relaxing and just enjoying our time together.   

Elliot got to spend some good quality time with his Aunts and Uncle and they even got to observe how our child likes to pee and now poo on us.  They all took off this morning, except for Blair, she is stuck with us, but a big thank you to all of them for making the trip out to Colorado!

This morning, Byron and I, the horrible parents that we are had Elliot circumsized (sorry if its too much information, but this is our life, haha).  We couldn't have this done at birth due to the brain surgery and then it was scheduled 2 weeks ago and we ended up at Childrens' again, so third time is a charm...right?  Well, Elliot would totally disagree!  He did great during the procedure...so I heard, I totally chickened out and stayed in the waiting room while Byron ventured back with Elliot.  Byron said that Elliot mainly screamed when they strapped his little legs down and not too much during the actually "chop-chop".   What a trooper again!  Now the little man is making us pay for it and we are letting him.  If something like that ever happened to me I would want to be held all day and soothed as well.  Thank god, Byron is on Spring Break this week and is home.

The rest of our week should be relaxing, as relaxing as it can be with a baby.  Here are some photos from our weekend, enjoy!  Oh yea, baby boy is up to 10lbs. 5oz, right on target.
Auntie Kendall

Loving being able to look at Daddy in the Moby wrap
Getting ready for the WALK
All kids with Hydrocephalus wore these blue bandannas, Elliot looks "gangsta"
Family photo
Truckin' along
Group shot
All the kiddos with Hydrocephalus
Auntie Blair

Uncle Chris
A day we hope Elliot never remembers, haha

Wednesday, March 9, 2011

"Babies Got Brain and I can not lie, no other brother can deny..."

Well our appointment at Children's went fabulous!  First hurdle...there is no infection.  Second hurdle...there is no more leaking of cerebral spinal fluid externally.  It's still leaking inside but as his head continues to grow and the fluid continues to drain it will get back to "normal".  So the internal leaking is A-OK for now. 

We met with Jane one of the Neurosurgery Nurse Practitioner's today who was awesome.  She put up with all of Byron's corny jokes and all of our ridiculous questions ("Do babies with Hydrocephalus get hiccups more than typical babies??"...I know we are totally ridiculous).  She also gave us tons of explanations of the brain today with lots of visuals which was really helpful.  But best of all, she pulled up Elliot's MRI's and did a comparison with us.  We compared the MRI from 1 day old to the MRI at 23 days old.  First off its an amazing feeling when a medical professional walks into an appointment and the first thing she says is "wow, we can really tell that shunt is working".  Byron and I thrive off of any positive and she was bouncing with positive words today.  Ok so back to the MRI's...there is a totally significant change from one MRI to the next.  Elliot's lateral ventricles are shrinking, the excess cerebral spinal fluid is draining and his brain is "sponging" back beautifully!!!!  We were told that it could take up to a year for his brain to start coming back and his has come back greatly after only a month.  It's amazing...and Byron and I never thought that a picture of a brain could bring tears to our eyes.  Jane was nice enough to print off some pictures for us to take home, so Byron edited them to make them a little easier to compare and to share. 

She also measured Elliot's head and he is still measuring at 42 cm, which is good for his age and post-shunt date.  She decided to leave his stitches in for another week...her words were "I wouldn't want to take them out and for him to spring a leak"....soooo we will go back to Children's next Friday to meet with Dr. O'Neill and have them removed.  Even though after she mentioned "springing a leak", Byron and I wouldn't mind them staying in for the rest of his life, ha ha. 

Overall this was a great appointment that left us smiling from ear to ear.  We know that there will still be bumps in our road however we will embrace all good news with open arms.  Enjoy the photos.


Tuesday, March 8, 2011

One Month Old!

This last month has been the longest, shortest, scariest and most wonderful month of our lives!  Can I fit a few more adjectives into one sentence?  Probably, but I'll spare you.  So far Elliot is doing good this week.  No word from the neurosurgeons about shunt infection, so we feel like we are in the clear.  The shunt tract is definitely still fluid filled but it ebbs and flows which is appropriate.  Unfortunately it gets really big when Elliot cries which just means Byron and I are hovering more than usual and not wanting him to cry for fear of the shunt leaking cerebral spinal fluid through his skull again.  Today Elliot and I made our first journey to the grocery store by ourselves!  I figured after one month, Elliot and I were ready to take on the world.  I plopped him in the Moby wrap and off we went to get our groceries.  After a successful grocery trip, we even got a little more gutsy and we filled up the gas tank in the Rover...whoa, what a day!  Filson even ventured closer to Elliot tonight and they took a little snooze together. Tomorrow Elliot gets to meet his Auntie Kendall who is flying in from Cincinnati, and he is thrilled.

We are off to Children's in the morning for our follow up appointment.  We are feeling good, but wish us luck!

"I'm one month old!"
The Napping House

Sunday, March 6, 2011

There is no place like home

Quick update:   Elliot was discharged yesterday (Saturday) around 3pm.  They still aren't sure the exact reason of the oozing or the fluid filled area around the shunt but they increased the flow of the fluid and so far so good.  All cultures are coming back negative for infection, which is wonderful, but they continue to run testing on the fluid for up to 5 days...but we are really feeling like its not an infection.  They sent us home with information on how we need to monitor him and told us when we should call if we are worried.  The neurosurgeons will see us sometime this week to continue to monitor him and make sure all is working properly.  They would have let us stay in the hospital for monitoring, but Elliot is happier at home and so are mom and dad. 

We were worried that our first night back after 2 nights in the hospital would be just like our first night home after he was born...but Elliot proved us wrong.  He slept like a champ and only got up a couple of times to eat.  It was sooooo wonderful to sleep in our own bed last night.  His shunt is definitely fluid filled but it still feels like it should and Elliot is continuing to act like his normal self which is reassuring.  So far the neurosurgeons have given us the green light to go to Steamboat for the Hydro snowshoe event, but we will have to get the green light again at his appointment this week.  We really hope we can still go but Elliot will let us know. 

For now we are home, happy and being our normal little family.  Here's a few pictures of Elliot. 
Elliot chillin' in a basket

Momma time

Mommy and Daddy a little slap happy in the emergency room

Elliot is quite the reader

Stupid cords and monitors

Friday, March 4, 2011

Sometimes you don't wanna go where everyone knows your name...

Things have been going as good as we could hope for with Elliot.  We went down to visit Daddy at work yesterday and had lunch with some friends in Greeley and then headed home.  When we got home, while nursing Elliot, I noticed on his blanket that there was brown-yellow stains on it and after further investigation his sutures on his head where his shunt was placed were oozing.  After a quick call to the Neurosurgeons they called back and said that we needed to head down to Denver and get Elliot into the Emergency Room. 

We have been warned about shunt malfunctions and infections from the very beginning, but just like everything else bad, you still never think it will happen to your baby.  So after tracking Byron down at work, we headed down to Children's.  We were told earlier than kiddos with shunts get priority and boy were they right.  In a waiting room with probably 30 other children, Elliot went right back.  He had a Fast MRI done first, which, showed that he has A LOT of brain!!!!  So his brain is sponging back like it should be.  Then Elliot's shunt was "tapped", which is where they put a needle into his shunt and draw out Cerebral Spinal Fluid to send for testing to determine if he has an infection or not.  The bad news, this takes 48 hours to determine.  The neurosurgeon resident then put a new set of stitches on top of his other stitches to ensure that no more leaking occurs.  One of the big problems with a leak is that, where fluid can get out, bacteria can get in and we don't want that.  She also turned Elliots shunt back up, which means that for now they want an even smaller amount of fluid to be drained in hopes that it could solve our problem of the oozing Cerebral Spinal Fluid.  Then the nurses had to get an IV in him to draw blood for more testing and just in case he needs fluids while in the hospital.  The had to poke our little baby multiple and I mean MULTIPLE times to find a vein.  They eventually had to just put the IV in his poor little head.  That was probably the hardest part of the evening, we finally know what Elliot's cry sounds like when he is in pain...I just lost it, its a horribly sad cry. 

But through all the pokes, "tapping the shunt" and new stitches he once again proved how strong he is and what a trooper he can be through all this.  At 11 o'clock at night they finally admitted him and they had a room ready for him in the NICU.  On the way to the NICU, we had a quick pit stop for some X-Rays of his brain and tummy to look at the shunt.  Once to the NICU it was like Deja Vu...

Elliot was admitted back to the exact same room, with the exact same nurse that admitted him 3 weeks ago, Byron's favorite nurse too.  It felt most weird that this felt normal, I do hate the feeling that this could be normal for little Elliot.  But at least we are in the best hands with the best team.  They luckily had a sleep room available for Byron and I, not that we could sleep much, but at least we were just a few doors down from Elliot and it made it easier for those night time feedings. 

This morning, for the first time ever, Byron and I were both present for Rounds (usually one of us had just stepped out as they started rounds, so this was a nice change of pace).  At Rounds was Elliots entire Neurosurgery team, all the pediatric neurosurgeons, nurse practioners and residents.  The only one missing was the one that did Elliot's surgery and we will see him later today.  They all poked his little head, bounced ideas off one another, shared what they could with us and darted away.  We finally got to meet Dr. Handler today who was the first neurosurgeon who called us the weekend before Elliot arrived.  They mentioned during rounds that his skull looked great and that his bones are overlapping just like an infants should for now, and that its a good sign that Elliot isn't showing typical signs of shunt infections (vomiting, irritability, extreme sleepiness, etc.).  We just now are waiting for Dr. O'Neill to stop by and let us know the plan of action.  We have 2 scenarios I believe, one is to be discharged today and they will call us with the results, or the other is to stay until the results come in. 

Alot of things are still unanswered for now and Byron and I are continuing to process what all this means and we haven't gotten it down to the best exact description yet...we will continue to update as we know more information.  For now we are hanging in there and just waiting around like sitting ducks. 

Grandma attempting to burp him

Daddy and Elliot nap time

Lovin' the lamby

Deep in thought

Waving to everyone saying "I'm alright!"

"Can somebody please get this thing out of my head"

Daddy time

Wide-eyed and bushy-tailed

Tuesday, March 1, 2011

Happy 3 Week Birthday Elliot!

I apologize that there has been a lack of updates on my part, but our life is wonderfully boring.  I'll recap the last week for you all...We change diapers, love on Elliot, sleep, eat and Repeat.  Yep, that's it!

Yesterday we did take a trip to the audiologist to have Elliot's hearing testing, since hearing loss can often run concurrent with Hydrocephalus and he did not receive the newborn hearing screens when he was born due to the anesthesia he had for his surgery.  Well, he had a tympanogram done which showed no fluid in his ears (yea!), and the otoacoustic emissions testing was completed and showed that his inner hair follicles were doing what they should be doing (yea!) and then he had to have an auditory brain stem response test completed.  For this test they had little baby electrodes connected to his ears and his forehead and then mini earphones inserted in each ear...lucky for us he fell asleep during most of this testing, it took around 40 minutes to complete.  It test his brains response to a variety of tones and frequency and drum roll please........HE PASSED! (yea!)

To imagine all the odds this little man has beat in just 3 weeks is unreal and so exciting.  Byron and I prepare ourselves so much for all these test to come back with some not so good news and we so far have been proven wrong each time, and we are not complaining!

Over the weekend Elliot also survived his first photoshoot.  A friend, neighbor and colleague of mine, Heather, came by and took some wonderful photos of Elliot.  We have gotten a sneak peak of some of them and I am in love with them all.  I don't want to share them yet because then that would spoil the birth announcement, but I will eventually.

I also would like to thank so many of you for the wonderful donations to the Hydrocephalus Association in honor of Elliot.  Byron and I have never done a fundraiser before let alone a WALK and we are so excited for how much support we have received.  We have actually exceeded our fundraising goal, which blows my mind.  We are very much so looking forward to next weekend and the WALK, my sister Kendall is flying in from Cincinnati, my brother and sister-in-law Chris and Marissa are driving up from Flagstaff and my sister Blair who is here in Ft. Collins with us are joining us all in Steamboat for the WALK.  There will be an Updike invasion in Steamboat!  Byron and I have also been in communication with the family that is organizing and running the event and they so generously let us know of a vacation rental in Steamboat that a family that had a daughter with Hydrocephalus donated to us for the weekend.  So many things have fallen into place for that weekend and we are so looking forward to networking with other families and having Elliot spend his first vacation with some of his Aunts and Uncles.

The Friday that we head up to Steamboat will be a whirlwind of a day.  We have to start the day down at Children's for an MRI and an appointment with his neurosurgeon and then we will drive the four hours to Steamboat from Denver.  I am hoping that Elliot LOVES the car that day and is a trooper for our travels.

While re-reading this post before publishing I realize that this post is just not as funny as the others...my mom has reminded me that all of my previous post were written while on Percocet!  So while I'm excited I am healing and not taking a handful of medication, I miss my ol' Percocet self.  With my mom in town I am getting naps and actually getting things done!  Thanks again to everyone for your out-pouring of love and support!

Here are some photos of Elliot, sorry they all are very similar but we just can't help ourselves.

Dancing Arms

Loves his Boppy

His head has really shrunk

Our little burrito

Naked boy

Elliot and Dad's favorite nap position

Daddy lovin'

It snowed and we ridiculously dressed Elliot

"I didn't do it"

Hearing test