March For Babies: We did it!!!!

We sucessfully completed our 4 mile March For Babies walk. I am proud to announce team inVINCEable finished the walk with out the use of one of us being carried or short cuts :). It was a beautiful day for it. It was about 85 degrees and sunny. The turn out was huge. Much larger than we expected. Myself, Joe, and my friend Erin were on our team. We were just one team among hundreds. Thank you to everyone who sponsored us or gave us words of encouragement. It was a great experience.


It was wonderful to see so many people supporting a great organization. After reading many other stories at booths today it reminds us of how we too are blessed personally to have organizations like the March of Dimes. I read one story that really made me realize how fast technology/research is coming and how lucky we are because of that. For example when Vinnie was born he was completely maxed out on O2 and on the highest level the ventilator could be set on. The only thing they could do for him at that point was add nitrous oxide which is relatively new according to his doctors. Not all NICU's have this yet. We saw a drastic improvement for the next days and I truly believe that made all the difference. We went from having our doctor calling me in my room 3 hours after having vinnie telling us that we better get to the NICU because he did not think Vincent would make it much longer, to having a happy healthy 18 lb baby boy. Bottom line if organizations like the march of dimes can help save one baby, support one family going through the loss of a child, or be a helping hand with parents who have a child in the NICU than it is an organization well worth having.


After the walk we went over to grandma Vicki's. We grilled out and enjoyed some pool time. Vinnie took a dip in the pool for the first time!! It wasn't for long as he got tuckered out pretty quick, but he had fun!!! He's a little water baby.


Enjoy the pictures and thanks again everyone!!!!!!!!!!

Finished!!!!

I will chew on it.......

We are in full fledge teeth mode in the Karnes household. This consists of the baby oragel, lots of slobber, and Vinnie chewing on anything he can! (and I mean anything) Even when I am giving him a bath he tried to chew on my arm, the side of his tube, or the wash cloth. Hopefully soon I will be able to tell you that he bit me. hehehe

Vinnie had a pretty eventful past week. Grandpa Karnes from Florida visited earlier in the week. We were glad to see him. Vinnie will make his first trip to Florida this thanksgiving to meet his Aunts and Uncles (Joe's little brothers and sisters)

Saturday we grilled out. Vinnie's godparents Kristy and Justin came over, Ben, and Cassidy. I don't think he knew what to do with himself having all that attention!

Vinnie has been going through sleeping and eating spurts lately. He is up to 6 containers of level 2 baby food per day and rice or oatmeal. Last weekend on my journey to buy the store out of babyfood I found level 2 meat baby foods like chicken noodle soup, beef stew, etc. He is not too sure about this yet. He just stops in his tracks like "what is this stuff?" I think Joe was just excited that his boy got to have some meat. He is also doing well on the regular formula. Sleep wise he has decided lately that it is a good time to wake up at 1 in the morning and stay up until 3, then wake up again a few hours later. He always seems to fall back asleep when you decide to just start your day and make some coffee, the point of no return :)

This Saturday we will be participating in the March for Babies walk at Shelby Farms. It is a four mile walk. Thanks again to all our sponsors!!! It is greatly appriciated. We will be sure to send you pictures! Vinnie will go over to grandma's house during the walk, but we are still brining the stroller. One of us might not make it all the way and need to catch a ride. hehehe.

My brother Jon is still staying with us until May 11th taking care of Vin. They have been having a fabulous time.

Medically Vin has been doing well. Quiet and boring just the way we like it. He goes back in to the neurologist early may for a follow up cat scan.

Our Easter Miracle

Yesterday we arrived at Lebohner Children's hospital bright and early for Vincent's shunt placement surgery. Vinnie went through the regular prep process. We met with the anesthesiologist, admissions, vitals, etc. When we were getting ready to move back to the OR waiting area the two members of the neurologist team that would be in on Vincent's surgery came in to answer any additional questions we had. Shortly after they left Vinnie's main neurosurgeon Dr. Boop came in to our pre op room. Normally you do not see the doctor until you are in the the OR waiting area. He felt Vinnie's fontanel (aka soft spot on his head) and said the swelling had subsided as it was no longer bulging out. It had returned to normal (soft and slightly in). He decided there was no need to place the shunt yesterday!!! We were so relieved not to mention thankful the surgery was not the Friday before. For the next couple of months Vinnie will be monitored via CAT scans every two to three weeks. Dr. Boop said that he possibly may be starting to reabsorb the fluid on his own. He did prepare us though that he could still need the shunt placement. It could be a few days or a few months. It just depends on how he does in regards to the levels of fluid in his brain, the pressure, and so on.

Saturday Vinnie ran a pretty steady fever of 101.8 all day and was very miserable. His soft spot was really bulging this day so at this point having the surgery could not come fast enough. We did everything we could to break his fever (thank you google) and he was finally more comfortable in the early evening. After a good nights sleep he was a brand new boy Sunday.

We are now more knowledgeable on what to watch for, warning signs, and at home tests we can do (such as checking the soft spot and watching his eyes) to monitor if he is having issues related to hydrocephalus.

Thank you everyone for all your thoughts and prayers for Vinnie! We are truly blessed to know so many wonderful people who care so much about him.

In other news we had a great Easter. We went over to Grandma Vicki's house and Vincent even went on a Easter egg hunt! Vinnie got wonderful Easter presents from Grandma Vicki, Grandma Joan, and Aunt Frankie. Vin even got a visit from his uncle James this weekend. He was excited to see him, but even more excited to try and eat his hand :) We're expecting a tooth to pop through any day now!









Preparing for surgery Monday


Grandma and Vinnie on Easter Sunday



Chew chew chewing away on anything even in his sleep. C'mon teeth!!!




Chewing on Uncle James





Vinnie's sweet summertime hat from Grandma





Hanging with Grandma

Joe and his brother Jeremey (who will kill me for posing this picture) on Easter

Vinnie's cold press for breaking his fever. Worked like a charm!

Watching baseball with James

Too funny. Vinnie likes to kick the arm up in his tub now and really relax at his personal spa :)

Hanging out with uncle Jon.

Monday Monday

We've been putting Uncle Jon to work right away. He's been having a great time with Vinnie. I am officially out numbered now in the male female ratio department however! (Now I know how you feel Misty lol) We've been excited to finally be able to take Vinnie out and about in the world but the pollen has just been too bad here for us to take him out. There is a green film on everything. Thank you claritin!

Ok, I'm just procrastinating by talking about claritin. Now for the news I would rather not have to deliver..........


Last week as per my previous post Vinnie went in for his 9mth check up. His head was growing faster than the rest of his body. Naturally we thought it was because Joe was abig headed kid :)


They did an ultrasound the next morning just in case due to Vin's track record. If you recall when he was in the NICU he a grade 3 brain bleed. The ultra sound showed that the ventricles in his brain are dialated. They are holding too much spinal fluid. How much was the question.

We met went to a neurologist Tuesday and he had a CAT scan. This revealed his ventricles are 8-10 times the size they should be and he currently has more fluid in his head than brain
matter. My stomach turned when I saw the pictures of his scan. Although I am not a doctor I have seen enough head scans from the plethera of medical shows I watch.

In layman's terms the excess fluid is shoving his brain up against the skull from all the space it is taking up. In our brains you would see two small black spots on the CAT scan of this fluid. Your brain does need a certain amount of this fluid to surround it and "float" in. The tissue in his head is not absorbing the fluid like ours does. Probably because he had the brain bleed when he was born and the tissue is used to absorbing red blood cells.

Monday he will have surgery at LeBohner Children's hospital (where he had his hernia repair surgery) to place a shunt in the ventricle of his brain. A small hole will be drilled in his skull to place the shunt. The shunt will drain the fluid out of his brain through 1/8th inch tubing that will come out the back of his skull down his neck, across his chest, and into his abdomen where it will be reabsorbed by his body. The shunt will be permanent, he'll have it for the rest of his life. It is programable to pace the amount of fluid it will drain. We'll just have to keep him away from high magnetic feilds so it doesn't reset. I will ask more questions about these fields he has to stay away from. I did some research online with people who have shunts. Most of the time it looks like they really only reset during MRI's and things of that magnatude. There were some reports of resets due to microwaves, fridges (with many magnets on them), security checks such as metal detectors, etc. This sounds somewhat shady to me, but of course I will double check what they recommend him staying away from.




Here is a great link to learn more about hydrocephalus. The site also has a picture of what a normal MRI looks like and one of a hydro patient. It is similar to what Vinnie's looks like. :

http://neurosurgery.seattlechildrens.org/conditions_treated/hydrocephalus.asp


As a baby you will be able to see the tubing. As he grows more it will be less visible. As a toddler you probably will not be able to see it unless someone would point it out. As an adult if it is visible at all it will just look like a vein. He will also have a valve that will be on the outside of his skull right under the skin on his head. This is so if they ever need to take samples of the fluid for infections or just to test it they do not have to put him under and go back in. They can just take a sample via a syringe extraction.

Although it is frightening to imagine having this permanent man made device in my child, I am very thankful that their is an option to treat hydrocephalus.

You can't be scared and brave at the same time so we will be brave for Vinnie. He's such a trooper.

Please pray for Vinnie that he has a quick uncomplicated surgery and a fast recovery!!!!