Monday, February 21, 2011

Hydrocephalus WALK

Quick note - After only being parents to a kiddo with Hydrocephalus for 2 weeks, we were lucky to find out about a WALK to raise money for Hydrocephalus research for a cure.  Even better it takes place in Steamboat Springs, which is amazing that we can participate in an event so quickly! 

We decided to set up a fundraiser page for Elliot.  If you feel so inclined I believe its a pretty easy process, just copy and paste the following link and follow their instructions:

Thanks for lovin' on our boy and supporting future research for a cure for Hydrocephalus!

Sunday, February 20, 2011


First big and most important announcement of our first weekend at home as a family...I HAVE MY ANKLES BACK! kidding kidding, about it being the most important, but seriously the ankles are back.  Its amazing how quickly ones body can bounce back, it also helps that the Liposuction they performed during the C-Section is finally observable.

Enough about me and on to the baby.  Elliot is a rock star.  He went to church today and he lasted the entire Mass and we were even 15 minutes early.  Byron and I stared at him after every squeak and grunt and we were slightly nervous that during the quietest part of church would be when Elliot showed his "other" side, but he totally held it together and made us some proud parents.  It was so nice for it to feel like a normal Sunday and go to church for the first time as a family.

On another note, Filson and Elliot are becoming best buds.  Filson may disagree but I see it in him that he has a hidden soft spot for his new brother.  Everyday he gets more and more friendly with Elliot.  He first started off just sniffing him and now when we bring Elliot down to him he licks his face up and down and Elliot gets wide eyed and squeaks (that is his term of endearment).  When Elliot cries in his bassinet Filson goes over to the bassinet and sniffs it all over, although he is 115 lbs dog he isn't quite tall enough to see over the edge of the bassinet so he uses his second best tool...his nose.  Eventually I think Byron and I will feel comfortable having Filson babysit Elliot while we have a date night.

Bath-time...Byron and I feel like tonight we had one of the most successful bath-times with Elliot.  The last time we gave him a bath, Elliot acted like we dipped him in sulfuric acid.  We are getting better and Elliot will continue to train us, but I'm not sure I will ever be able to give him a bath without Byron's help!

After bath-time, Byron and I attempted "tummy time" with Elliot.  We know that his head is big and really heavy for him but we are still thinking that it is a good idea to have him experience tummy time.  Our hope is that at least he tries working those neck muscles and once his head shrinks more he will be able to move his head around with more ease.  

Byron and I have been so blessed.  Some work friends of mine and Byron's have been bringing us dinner every night and its so wonderful to have one less thing to think about in these early days of having Elliot home.  We are eating like kings!  Tomorrow morning we have to take Elliot to get some blood drawn for his 2nd newborn screen and then Byron has to head back to work.  We have been more than lucky to have him home for 2 weeks, I wouldn't have been able to get through these weeks without him, but he is going to be missed so much tomorrow by Elliot and I. 

After realizing I hadn't taken very many photos, I went photo crazy...Enjoy!

Best friends, Filson and Elliot
Falling asleep during tummy time

Attempt at tummy time

Trying to keep Elliot warm while we putz around trying to get the water warm
Happy Camper??

We survived bath-time

Loving on Daddy after bath-time

Elliot is totally unsure about this vibrating chair
Walk like an Egyptian
"Conked Out"
Checking out the world
Snug as a bug in a rug
Family photo (Do we look sleepy to you?)

Friday, February 18, 2011

Follow up appointments

Elliot had a big day today.  He first visited Daddy's work and Byron was able to show off his boy.  Elliot of course was a stud and put more people under his love spell.  We then headed down to Children's for our appointments.  Today at Children's was a radio station doing a phoneathon to raise money for the hospital and the Children's Miracle Network was there doing arts and crafts with lots of the kiddos that are at the hospital.  Its was a zoo. 

We headed to Radiology and he had an ultrasound done to check out his shunt and to make sure its functioning properly and that the cerebral spinal fluid is draining properly.  He was a champ and let them lube up his head and poke around with the ultrasound.  Not a lot was explained to us during this, but we knew we had an appointment with the neurosurgeons right after the ultrasound and that everything would be explained to us then...HOWEVER, we have been in this position before, exactly two weeks ago to be exact where ultrasound techs left us with no info and then someone else comes in and tells us life changing news.  So, needless to say we were nervous wrecks waiting for the neurosurgeons to see us.  It didn't help that they were running REALLY behind and we sat in a quiet room for 45 minutes waiting, twiddling our thumbs and reassuring each other that all would be OK. 

As soon as the nurse practitioner walked in, her first words were, "well his lateral ventricles are draining perfectly".  This was music to our ears.  His shunt is doing its job and working properly!  It has been draining the cerebral spinal fluid nice and slow and the ultrasound did not show any bleeding in the newly vacant spots.  Dr. O'Neill (the Doc who performed the surgery) even decided that his shunt valve could be opened a little more to allow more fluid to drain.  They open the shunt with a magnet.  Byron got to help which made his day and it took all of 20 seconds to complete.  The nurse practitioner went on to explain the signs and symptoms to look for in case Elliot's shunt becomes infected.  We did learn however that Byron and I can not infect the shunt and that the only way it could be infected is in the 'OR' from undetectable bacteria.  Not like that is more comforting but at least we will know that we didn't cause the problem if a problem pops up...but it won't.

Our next appointment will be in 2 weeks for a Quick MRI which is much sooner than we had expected but Dr. O'Neill wants to be able to monitor his progress more closely considering his hydrocephalus is severe and his lateral ventricles were and still are quite swollen.  Byron and I prefer the more appointments the better because then there is less time between getting more and more answers.  The Quick MRI won't necessarily show us brain activity but it will hopefully show that his brain is "de-sponging" (I made that word up) and filling up the vacant spaces.  We won't really know about specific brain development until Elliot crosses those developmental milestones...but again our hopes are high and positive, but its really does feel like a life-long waiting game. 

Byron and I continue to be impressed by Children's, University Hospital and Elliot's pediatrician.  We have never had so many people follow up on both Elliot's care and my healing.  Here are a few more pictures of Elliot, but I have been bad about taking photos the last couple of days, I think the sleep deprivation is kicking in...

Wide awake and staring at his toys

Crazy eyes

Mom, stop taking my picture!

Tuesday, February 15, 2011

The first of many...

We officially can understand what every parent goes through in those first 24 hours at home.  Unreal. Needless to say, it was rough...BUT, we survived.  Elliot is learning how to get used to our home and we are learning all about Elliot and all his idiosyncrasies.  Byron and I forgot that our little guy is used to sleeping in a NICU with lots of noises at all hours and nurses there to sooth his every whimper.  At 4:30am, we were really thinking how foolish of those doctors and nurses to send us home with a baby, we still NEEDED them to help us with our boy.  After lots of tears and questioning our parenting skills, Elliot finally fell sleep in his bassinet for a couple of hours.  It was a miracle.  Byron and I kept checking to make sure he was still breathing, haha. We spent those first couple hours eating a wonderful meal that our neighbors surprised us with.  It couldn't have been better timing.

Night #2, went fabulous.  We aren't holding our breath for night #3, but we are still hopeful.  Our little guy let his mommy and daddy finally get some much needed sleep.  He still was up a couple of times to eat, but there is something about those middle of the night feedings that are some precious moments with my little man.  Byron and I even got a shower this morning, haha, the little things.

Elliot had his first doctors appointment at the Fort Collins Youth Clinic.  After some great recommendations for some pediatricians we have found the perfect doc for Elliot.  He passed everything with flying colors.  Of course he did pee on the nurse first thing.  He is in the 75th percentile for height and 45th percentile for weight and his head is still off the charts, but that is to be expected.  Since his surgery though, his head has gone from 46cm to 42cm.  The neurosurgeons want him to drain slowly, so he is doing great. It was very wonderful to have a "normal" doctors appointment with lots of great "normal" news.

After a good nights sleep and a good doctors appointment Byron and I were on a high and we even took Elliot out to lunch and then on his first outing to Home Depot.  It seemed only appropriate for him to go to his Daddy's favorite place.  After coming home and resting, we even took Filson on a walk around the park.  It was so nice to get out of the house and feel like we did some normal activities.  We even had our friends, Chris and Ann come up for dinner with their little ones.  

We are enjoying our little man so much and he just melts our hearts with every silly face, coo and squeak that comes out of him.  We are sure this week will be full of more first, good and bad, but we wouldn't have it any other way.  Friday we will be off to Children's for an Ultrasound of Elliots shunt and a follow up with the neurosurgeons.  We are looking forward to learning how Elliot's shunt is working and what is to come next.  Till then...

All dressed up

Wide Eyed

Rockin' another hat

Elliot loves car rides

Walk in the park

Home Depot

Sunday, February 13, 2011

Elliot means "Gift from God"

2-Ply toilet paper is UNDER-RATED!  Needless to say WE ARE HOME!  Dorthy was spot on when she said, "There is no place like home".  I have to apologize that we have left all our "followers" hanging. I have finally experienced complete and utter exhaustion and had no energy left to type.  But, no news is good news here!

To back up a little bit, I was discharged yesterday morning, with my bags packed at 7am, rushing the doctors and nurses to fill out my paperwork.  They kept telling me "no rush honey" and I kept telling them, "I've got to get to my baby!" After signing the papers and filling my lovely narcotic prescriptions, we were off to Children's to spend the day with Elliot.  Typical day in the NICU, lots of buzzers going off and beeping and hub-bub around teeny tiny bundles of joy.  We got to change lots of diapers, work on breast-feeding and love on him. I'm not sure he was ever laid down yesterday between Byron and I, the Grandma's and his Auntie Blair holding him. Its hard when you have to learn how to do all those things with a million wires hanging off your baby and then when you accidentally knock one off, his machine starts beeping.  I tried my hardest not to look at the monitor, but I'm a mom now and I have to. 

At lunch the most fabulous news came...Elliot got relieved of his IV, which was a beautiful thing.  The poor little boy didn't even know what to do with his hand for about 12 hours, because since he was born he has had that IV in with this brace device on his arm.  He was taking in enough fluid, finished his antibiotics and was impressing all his doctors, and his nurses told us that as long as he doesn't do anything foolish, he could go home on Sunday.  We never imagined when all this started last Friday that we would ever be able to take our baby home that soon.  Not even a week in the NICU...Miracle Baby! 

The rest of the night we all took a sigh of relief and started laughing more for once.  Most likely laughing at me, since I was finally remembering all the weird things I did and said during my C-Section after being on all those drugs.  Having control of ones own morphine is a wonderful thing, but needless to say it can leave you a little loopy.  Let's just say, I told the doctors that I'd rather be in pain than itch anymore...I got a lot of odd looks, haha. 

Children's Hospital is a great place and they have Family Suites that you can sign up for to stay in especially if you have a baby in the NICU.  Byron and I were lucky enough to snag a Suite last was a nice bed, but the speaker system going off in our room at 2am with a Code Blue in some 6th floor room, scared the crap out of us.  That along with the phone calls to feed Elliot every 2 hours, left us feeling like real parents!  This morning was spent waiting around for the doctors to do their rounds and sign off on all of Elliot's paperwork.  When the time finally came, Byron got the shakes and was a little uneasy about our ability to be parents without the help of all the nurses and doctors.  With lots of encouragement, we found ourselves in the elevator with a wagon full of stuff we have collected over the week and headed to the car.  Of course I had to sit in the back, Doctors orders that I can't drive for a bit, but it totally worked in my favor this time since I got to stare at Elliot the whole way home. 

We made it home, whipped out the video camera and introduced Elliot to Filson.  Filson is not totally impressed, however, we did leave Filson on Monday unexpectedly and never got to say good-bye.  I think after some lovin' from Byron, Filson will warm up to Elliot and they will be best friends.

So far since being home, Elliot has pooped 4 times, hahaha, and tried out every baby gadget that we have received, we just couldn't resist.  Its great to be home with our new bundle of joy and to start our family!  We will continue to post throughout our adventures and doctor visits and again we want to thank everyone for the out-pouring of love, prayers and good thoughts that were sent this way, we couldn't have done it without everyone's support!

Nap time with Daddy

Auntie Lovin'

Time to go home

Car ride

Going on a tour of the house

The baby burrito content in his swing

Friday, February 11, 2011

Another Good Day

Byron went over this morning and spent some good quality daddy and baby time while I rested and got the once over by all the doctors.  He got to change another diaper and then was able to feed Elliot with a bottle.  He even successfully got a good burp out of him. Elliot just loved up his dad and was very content in his arms.  Lucky for us, one of his nurses took a few pictures of Byron while he was feeding him.

After some lunch, Byron wheeled me over to Children's for another visit.  He thought off-roading wheel-chairing was a new sport, I had to "nicely" remind him that I did just have surgery.  When we got there Elliot was spending some time with his Grandma's.  After we showed up, the lactation specialist popped over for a visit and helped me work on feeding Elliot for the first time.  


Elliot took to the boob today!  Now that he has tasted the finest, there is no turning back!  Its a pretty amazing feeling to feed him while he is staring at me and grabbing onto my finger with his free hand.  One of my most favorite moments so far.  We choose not to take photos of this moment to share, haha, those are just for Byron.  Elliot and I also finally got to share some skin-to-skin time, which is what I feel like I have been missing out on since day one, so it was a good moment for the 2 of us.  

We left the Grandma's to spoil him some more, while we headed back so that I didn't get in too much trouble with my nurses.  Around dinner time, we got a surprise dinner of Red Lobster, which made Byron's night.  Since day one of finding out we were pregnant, Byron has been looking forward to the lobster dinner at Poudre Valley Hospital in Fort Collins, where we thought we would be delivering Elliot.  So, since we have been down in Denver, we keep joking that he missed out on his lobster dinner...well not anymore!  

After dinner, we headed back over for some Elliot time.  I got to feed him once again and then he got some daddy lovin'.  We did get some fabulous news that Elliot can go home soon.  He just needs to show his doctors that he can eat every 2-4 hours for 24 hours and then he is ready to go home as long as everything else continues to go well.  After this whole ordeal started, just a week ago, I never would have imagined we would get to take our baby home that soon.  He is just thriving and such a miracle.  We are some proud parents!

Thursday, February 10, 2011

Proud Papa and Happy Mama

What a day! 

This morning was a rough morning, the surgery went on longer than expected and once Elliot was finally in recovery he wasn't breathing as he should have been.  After 2 additional hours of him "forgetting" to breath, the doctors and anesthesiologist decided whether or not to incubate him.  Fortunately, he bounced back and finally started breathing on his own.  I think this might be a glimpse into his stubborn side... aka Byron's side.  His neurosurgeon, Dr. O'Neill, told us that surgery went wonderful and that Elliot is reacting to his shunt in the perfect way.  The shunt is draining the cerebral spinal fluid nice and slow, which is best, and the swollen parts of his head are starting to sink. The grandma's got to spend some good quality time with Elliot, while Byron and I tried to rest.  He is a groggy little boy and in some pain which is to be expected, so the poor baby is on antibiotics, Tylenol and who knows what else, but it seems to help him sleep off the surgery and anesthesia.  

While I continued to rest and recover, Byron headed over to visit Elliot and a Priest stopped by to spend some time with them both.  He said a beautiful prayer with Byron and baby then told Byron he was dedicating his next mass to Elliot.  There sure are a lot of people out there pulling for him!   

After resting more, we went for a "walk" and snuck out back to Children's to visit Elliot.  We met our friends Chris and Ann there and Elliot had his first visitors (besides his grandmas).  His fluid is continuing to drain and right now he has quite a bumpy head with Neosporin all over it to help the incision heal.  The neurosurgeon stopped by and told us that he is healing nicely so far and that after Elliot does some growing, he will grow into his head a little better and his skull bones will fuse together and not look so bumpy.  We still think he is one handsome dude and his head just adds character and a good story for him to tell on the playground.  

Other Child: "Whoa your head looks funny"
Elliot:  "Yea, well I survived brain surgery at 2 days old..."

While visiting him tonight, the neurosurgeon, nurses and doctors all felt pretty strongly that its time for Elliot to eat for the first time in his life.  So excited, I ran off to the lactation room and pumped enough for his first feeding.  While Elliot's been away from me, the only way I have felt really useful is to begin pumping so he will have the best nutrition while he heals and grows.  The docs all said that I could even hold him while feeding him and that his head is not as fragile as Byron and I suspect it is.  As soon as I held him, he opened his eyes and took the bottle immediately.  He was so alert while feeding and he went to town on that bottle.  He had no problem and as soon as he was done he fell fast asleep.  Overall it was amazing!  Our little boy is mastering one big milestone after another.  Tomorrow we are going to actually try breastfeeding.  I think he will do great!

We started off a nervous sobbing wreck waiting for our 2 day old baby to come out of brain surgery and realizing he was not breathing correctly, to ending the day by feeding him his first bottle in less than 12 hours.  Unbelievable...

All eyes on mom

Byron changing another diaper. 



Here are some pre-surgery photos of Elliot.  Post-surgery photos to come.

Baby boys head before surgery

We can't kiss him enough


Elliot did great in surgery and is now working on recovering.  The anesthesia really knocked him out and he is so sleepy that he is forgetting to breath on his own.  He may have to have a breathing tube till tomorrow, but we know he has strong lungs, we just need the anesthesia to wear off.  He has a crescent shape scar on the back of his head and a little scar on his belly.  Shunt infections are pretty common but we are just hoping that his body reacts well and that it does its job effectively.  I broke out of the hospital again to be with him during surgery, but now I'm exhausted and probably did too much on my 2nd day after surgery.  We feel really confident and happy right now.  More updates later. 

Wednesday, February 9, 2011

Too many decisions for a one day old baby

Today has been a long but wonderful day.  My nurse got me over to Elliot's NICU bed early this morning where Byron and I could spend some quality time with him before he was transferred across the street to Children's.  He is such a handsome little boy and its a great feeling that although I don't get to hold or see him often he still soothes immediately in my arms.  A crew from Children's came over around 10am and moved him to the NICU at Children's for his pediatric neurosurgeons to keep an eye on him and make some decisions about his care.  

He passed his neurological exam with flying colors, he is reacting to sound, tracking with his eyes, moving every limb, crying when appropriate and all his organs including, heart, lungs and kidneys appear to be functioning perfectly for a one day old baby.  Byron was able to spend a lot of time today at Children's with Elliot while I worked on getting better at University hospital.  Byron was even allowed to finally change one of Elliot's diapers and low and behold, Elliot peed on him...haha, now he is one prepared Papa for the next time he gets to change him.  While Byron and baby were at Children's, I was finally able to shower, walk around and be a lot more active which felt so nice.  

Elliot had his first MRI this afternoon to look at the possible cause of the hydrocephalus.  What has been determined is that he has Aqueductal stenois, which if we understand it correctly he has too narrow of a passage between his 3rd and 4th ventricles in his brain for the cerebral spinal fluid to circulate, therefore it builds up and causes a lot of pressure on his brain.  They scheduled his surgery for tomorrow morning (Thursday) at 7:30am.  During this surgery they will put a Ventricular peritoneal shunt in which will drain his cerebral spinal fluid into his belly where it will be reabsorbed.  This shunt will be internal at this point, but it comes with a lot of possible complications such as infections.  He will have to be monitored closely for the next year to make sure his shunt is working properly.  Unfortunately, at this time we still don't know anymore information about Elliot's brain development.  One scenario could be that once the fluid is drained over the next couple of months his little brain (which is like a sponge) will bounce right back and he will be a typically developing kiddo.  The other scenario is that this blockage occurred early in his brain development and therefore he could have quite a few cognitive deficits.  

We are holding out hope for the best scenario, he has many things in his favor right now and besides his large head, every other part of him is typical for a day old baby.  They most likely won't be able to tell us more for a few months.  Those few months will be hard but we will just have to take one day at a time and have some faith that all will work out.  After hearing this news, we were again shocked and scared and I was especially sad since I was at a different hospital and couldn't see my baby. mom and Byron made a jailbreak and wheeled me over to Children's so that I could spend some time with Elliot.  It was the best hour of my life.  We just snuggled and loved on him.  I was also able to change his diaper and he peed on me too, we will have to get used to having a little boy and learn some techniques.  They even allowed us to put a little sleeper outfit on him for the night.  

Tomorrow his surgery should take a couple of hours and if all goes as it should and he recovers as expected they said we may even be able to take him home this weekend...but it just all depends on how strong he is after surgery. 

We never believed we would have a baby and at 2 days old who needed brain surgery, its more than we could ever imagine and its very difficult for us.  Please continue to keep us in your thoughts and prayers throughout his surgery tomorrow

Tuesday, February 8, 2011

Update and Pictures

After tossing and turning all night long watching the Weather Channel for 5 hours, they finally began to prep me for my C-Section.  I know there are a lot of ladies reading this blog and telling me its not too bad, but boy did it feel like an out of body experience to me.  After all the prep, Byron was brought into the room and Baby Elliot joined the world minutes later at 8:03am.  He came out kicking and screaming and it was the first time in days Byron and I could take a deep breath.  Byron was in awe of the C-Section and couldn't help but check out the entire surgery.  The doctors thought he was a riot.  Byron followed Elliot to the NICU and they finished up on me and off I went to recovery.  I finally got to see my little boy around noon, it felt like days had already gone by. 

Elliot is one handsome little man.  They told us immediately that at first glance he physically was looking great.  Many times hydrocephalus can also occur with spina bifida, but not with Elliot.  He weighed in a 8lbs. 15 oz. and 21 3/4" in length with an Apgar of 8 and 8.  He does have an elongated head, but its one nice lookin' noggin.

After an ultrasound on his brain, an echo-cardiogram, chest x-rays and more the NICU doctors and the pediatric neurosurgeons declared Elliot stable enough to not need oxygen anymore and ready for the next steps.  Elliot will be transferred to Children's Hospital (right across the parking lot) to have a MRI in the morning and possible brain surgery to place a shunt in his brain to relieve the pressure on his brain tissue.  After this, we may have more answers on Elliot and his brain development.  We are extremely positive right now and hoping for the best. 

Byron and I were also finally allowed to hold him tonight and it was the best feeling we have ever felt to hold our little boy in our arms.  He is soothed by our touch, startling to noise and opening his eyes lots to check us out.  Its amazing!  All-in-all, today felt like all good news.  Elliot is in great hands.