Father of twins
 

On Oct. 24,2009 my twin sons was born. They were 10wks 5days early. Thomas had a brain bleed. Level 3 on right, and level 4 on left. By Dec 23, the right side had resolved itself completly. The left side partially resolved. His right ventrical appeared to be enlarged. After a MRI, the ventrical was normal. There was however brain deterioration.
Thomas' only evidence of hydracephalus is a) the size of his noggin b) little mobility of right arm. Now due to the pediatrician's office failure to decide which of the insurances to accept Thomas has ben refered to a neurosurgeon. Surgery is going to happen. Don't know when. The first appointment is tomorrow. My question in what am I to expect to hear, see, and do? The enternet talks about all possabilities. The pictures are sevear. Is there anyone out there that is "normal"? I know it's a long time away, but what happens to Thomas when my wife and I are gone.:confused:

relieved
 

Today we had an appointment with our neurosurgeon. Dr Ruble of Atlanta. It was confirmed he diagnosed my son's ultra sound and MRI. He was straight forward, with tact. My son will have a vp shunt implanted. Looks like July 9th. The doc gave us an educated guess that Thomas will improve on his developmental skills. But warned us that the shunt brand he uses has a 50% failure rate in the first 2 years. We had a CT scan done during the appointment. Nothing new was found. Oddly enough I received a copy and looked at it when we got home. It was interesting. I was able to see what was the problem. The nurse said to keep this with him for emergency. And to keep any updated scan handy. So I thought I would pass that info on.

I was sad to read of the troubles that little Thomas has had to endure, but pleased that that his outlook is optimistic.

I know very little about hydrocephalus, except for what I learned while caring for children with the condition during my nursing training (a very long time ago). Just the same, I wanted to reply and let you know that some-one is thinking of you and your family.

I look forward to reading better news in your next post.

Today is Wednesday. The day after tomorrow is Thomas' opperation. The feeling is very omminus. We know it is needed. Dr Wruble is very respected in Atlanta. It's the waiting and counting down that is getting very nerving for my wife and I. I'll post the results Monday. Give him time to recover and respond.:winky:

Thank you for the update.

I'll say a prayer for little Thomas ::smileypray:

surgery
 

We are home! Thomas is doing great. Dr Wruble told us the surgery would last an hour and a half. The nurse called and said Thomas was under and the doc was starting. Not even 45min in the doc asked us to the consult room. Thomas did good the surgery was a success. SURPRISED THE SNOT OUT OF ME!!!!!!!!! So after a night of observation we came home. Thomas is a different baby already. It'll take a couple of months for his body to catch up to his head. We are seeing personality differences now. It will take a couple of weeks for abilities to improve. Thank everyone for the prayers:grouphug:

:yahoo: Excellent news! :yahoo:

Thanks for letting us know. :D

update
 

It was a week since Thomas came home. Thanks to Dylan(twin brother) a few questions came up. Dylan is learning to sit up. What sits up can fall. Dylan fell backwards and hit his head. Thomas' shunt is place 2-3 inches behind his left ear. Question #1 When Thomas is learning to sit up, is there a chance that the shunt will be damaged from the impact. Question(s) #2/3 When Thomas falls back on the shunt, can it rupture the skin? / crack his skull? No we wasn't told to get or were we given a helmet. We have a follow visit with Dr. Wruble on July 29th. Until then, does anyone have the answers to these questions?
Friday the 16th, Thomas had Physical Therapy. Daniel the PT said there was a great deal of improvement in just his cognitive and reflexive. Daniel said that this was a huge push in the right direction. Some physical improvements has been noticed. The opening and grasping with his right arm and hand. Before there was little activity. I pray that this continues to improve and accelerate.
If you have been in my shoes, and you recall anything that came up. Please let me know what happened and best way to deal with it, so I'm prepared.:wink:

update
 

Tonite Thomas has discovered his right hand. The shunt was definitely the right course. Dr. Wruble is the man. God is awesome. There is still a ways to go before he is caught up, but I'm excited about it all. Little steps is still improvements. I know there are people who have read this and prayed for my son. Thank all of you.:D

update
 

We had the follow up appointment with Dr. Wruble. Doc says that Thomas has improved, and the incisions looked great. He informed us that in 6 months we are to get a C.A.T. scan and another follow up appointment. The physical therapist (Babies Can't Wait, Atlanta, GA) is doing a great job. Thomas is on the right path. Thank you to everyone that reads this and said a prayer.:)

That's wonderful.... thank you for letting us know. :)

Oh by the way. To the readers that are new to this condition. Dr. Wruble said that the only valve damage due to impact was(that he has delt with) was, when the boy fell and the valve hit the edge of the coffee table.

I am a mommy of premmie twins as well, and one of them had a grade three brain bleed that led to hyrdocephalus. He had a vp shunt placed at 12 weeks. I won't go through all the gory details but he's had a couple revisions (mostly due to infection) but has come through remarkably well. During the shunt failure, we noticed that he was not meeting milestones like his twin, and even had some setbacks. We were told that we could not compare them- which is true. When he starting losing what he learned though, I knew there was a problem. I had a lot of trouble getting a dr. to revise it, and when I finally found a dr. who would, he was so far behind and so sick it was getting dire. After the surgery his whole personality changed. Cheerful, playful, and trying to keep up with his sister. He still wouldn't walk though. We took him to the opthamologist who felt his nystagmis (a slight shaking of the eyes from the increased pressure on the optical nerve in the brain) was giving him vertigo and keeping him from walking. There was a new study that said if they corrected the eye muscle (like they would do for a lazy eye) before age two, they was a marked reduction with the nystagmis. A week after the surgery, he walked. He was 26 months- 23 months by his adjusted age.
I only mention it due the severity of the brain bleed to keep and "eye" on the eyes. Increased eye shaking also means increased pressure on the nerve, and can be an indication of a shunt problem. If you don't have one already, find an opthamologist who can keep an eye on it for you. He can look at the nerve with a light and possibly save a trip to the hospital or ct scan.

I wanted to add that the shunt is supposed to be very sturdy- they are intended to last a lifetime- the non programmables at least.

update
 

To multimom> thanks for the heads up. We have already gotten the eyes under watch. There is no sign of any complications. We already knew that you can't compare siblings let alone twins. They are different already. Hydrocephalus just adds to the variation of development.
Everybody> Thomas has started to babble. He was already squealing, grunting, laughing. Now he started to make the "buh" and "muh" sound. I think the "buh sound is our (mom and dad) fault. we call both boys buba. Thats fine we are already rednecks, now there are two more in the world.So we are doing great. On a much lighter note. I think the brother is going to need a helmet. Dylan is learning to stand up, and learning the effects of gravity. G-nite all, and keep your heads up if you can.

Happy Birthday
 

Our boys had their 1st B-day a couple weeks back. Thomas is doing really good. It looks like he might start crawling. There might be some hindrances due to him not using his right hand/arm. Right now he uses his left hand an spins himself around on his tummy. It's pretty funny. There is improvements, he sits up pretty good in short periods of time. He is holding his head up perfectly. He is happy. No symptoms has come back.
We have some awesome news. March of Dimes wants our little family to be the ambassador family for Henry County of Georgia. This is in Stockbridge, McDonough area. We will be on the cover for the 2011 calender. So this is pretty exciting.

Hi tbirdowner86... thanks for the update, and happy birthday to your twins.

That's good news about Thomas and congratulations on the ambassadorship. I look forward to hearing more about it later.

It has been a while since my last posting. The boys are going strong. Dylan is just running around getting into trouble as boys do. Thomas is doing great. His doc says he is growing into his head. Since the surgery Thomas' head has grown 3/4 of an inch. That's good compared to how fast it was growing before. Dr Wruble said that he didn't need to see Thomas until Jan. of 2012. Thomas however is going to get A.F.O. and a hand splint April 15th. We already had a casting made. The A.F.O. is a Articulating Foot Orthotic. basically it's a foot brace, this one will stop his foot from pointing down constantly and prevent him from walking on the inside edge of his right foot. The hand splint will only be worn at night. This will hold his hand open while his body is at rest. His hand is in a fist constantly. This makes it hard for him to open it. If his hand is open at rest he can open and close it at will. For those in the Atlanta, GA area, C.H. Martin orthotics and prosthesis is great for kids. 80% percent of clients is pediatrics.

tbirdowner,
I just caught myself up on the history of your twins. I'm so glad things are looking up and going in the right direction. I am also SO glad to hear that you are getting the services you need and deserve. I wanted to share a bit about my own experience (from my parents' recollection) as an infant with Hydrocephalus. I, too, had a big head and lagging development. I had to "grow into" my head, just as Thomas will. My parents said that by the time I was two I was walking and was just about caught up in development. My point isn't to say that by the time he is 2, Thomas will be caught up, but to say that it varies but that he WILL catch up, on his own unique timeline. I am know 26 and you would never be able to tell that I have hydrocephalus, unless you felt my head :wink: I hope things continue to progress well for your boys. Keep advocating for your needs and your boys' needs. I have learned that advocating for my medical needs is going to be a lifelong necessity!

Hi tbirdowner86,
I have just read the history of your little boys and am glad they are doing so well, I also have hydrocephalus and have had since birth and I am now, with help from neurosurgeons and keeping an eye on my symptoms, am completely normal. As with annakkro in the above post, you wouldn't even know I had hydrocephalus unless you felt my head!
Good luck to you and your family with everything and dont be afraid to ask questions on here, we are a friendly bunch!

Many thanks for sharing your son story with us. My son was born with hydrocefalus that was caused by sever bleeding type four. He was shunted when he was two month and now he is seven month old. But he still dose not react with us, dose not hold his head and there is no eye contact. We know that his vision was effected. However, we want to know more about his developmental delays and progress milestone. We feel hopeless and we need some light to be shed on this subject; as to what should we expect or what should we do for him.

Thanks for sharing your son's story. My son was born after 31 weeks of pregnancy where he was diagnosed with type four bleeding that led to hydrocephalus. He was shunted when he was three months and now he is eight months. Until now he dose not react with us, dose not hold his head and dose not make an eye contact. We were told that his vision was affected (70-80%). But our main concern is what are we going to expect interm of development delays and when he should achieve his milestone. Also, what can we do to help him.

Update
 

:) It has been a while for me to get on again. Broke computer, forgot website address, forgot sign on a password. Sorry it took so long to get back. Dylan is just awesome. He is a big help to his brother Thomas.
Thomas has come a long way since my last post. We have his yearly CTscan coming up in a week. He has hemiperisis. Which his right side has limited mobility. Kinda like a stroke victom. Thomas' right leg works at 90%. His right hand/arm is about 50%. His physical therapist has been a big help is showing us how to work with him. Who knew my massage therapy training would be so useful now. Other than his limited mobilty, he is perfect. His cognitivelevel is good. He is a little behind, but it is due to being 10 weeks early as well as hydro. Vision has not been tested in a while. The pediatrician wants to get a follow up test done, just to check though. As you can see in my profile pic, THOMAS IS WALKING! We had to get an arm brace for his walker. The first time we strapped him in, he took off with a strut. He was walking with a mission. I'll try to post more often now everything is in order.

Aligallaf, I'm sorry I haven't responded until now. I had been off line for a while. My heart breaks to hear of your son. I know that it is scary and fearful. Your son will have a lot to overcome. Get as much support as you can. Physical therapists will be a huge help if you can get one.
His development will vary due to stimulation. The more you work with him, the better. Get excited over every little improvement. No matter how small others may think it is. Be positive.
As far as his working on his neck strength. We would lay our son on his back. Then lift him by his arms just until his shoulders lift off the surface. His head my roll back, that's why you don't lift so high. Just make silly, or funny noises to get him to look towards you. The stronger he gets the higher you lift him up. We did this until Thomas was 13-14 months.
Talk to his doctor about visual therapy. Drastic contrast has been helpful with some visually impaired patients. Sit in a room with the lights out, and move a flashlight around. See if he would follow it around.
I know you posted this a while ago, How is your son doing now? I'll be on at least daily now.

How exciting for you all, and thank you for the picture. He sure does look happy. :)