Long overdue................

Sorry for not updating for so long. I've started to get some e-mails gingerly asking if everything is OK. And it is. : )
Colby is doing WONDERFULLY! He's a new little man ever since his surgery. He's 1,000 times more alert. He responds to our voices. He'll smile and giggle if you play with him. He’s so alert to the world around him. I can just imagine that it must be a huge relief for him not to have the pressure inside his head. And I can only imagine that it must have been affecting him from having his ventricles press against him brain. Either way, he’s doing just great and it's a night and day difference from prior to his surgery. He still has the white tape strips across his incision on his head. I'm not sure when those come off. But he's had no adverse side affects from his surgery ....... knock on wood. We feel very fortunate that he's had such a good result.
We're sometimes asked if this means he's "cured". The best answer is that it seems like he is for right now and we hope that will continue. We'll need to always watch for signs that his hydrocephalus has come back as the hole that the doctor made can get blocked and thus allow pressure to build up. But if that happens in a week or 10 years, then it's a week or 10 years longer that he could go without having any other interventions. And we certainly hope that he can go his whole life without any further signs of his hydrocephalus.
Birth to three came last week and said all in all he's doing pretty well. He can hold his head up and look around really well now if you hold him upright. It’s amazing to watch him develop. He still has trouble lifting his head while he's lying on his belly, but that will come. They said his legs felt stiff. The immediate concern is that it could be an early sign of cerebral palsy. But we honestly think that he was just being a little stinker and was fighting with therapist while she tried to move his legs because at other times, his legs are as limber as can be.
So why haven't I been updating? Honestly, because I needed a break. It's been a very long 7...or maybe even 8 months now. From the beginning, even prior to this blog, I started sending out daily e-mails. Then daily updates on the blog. Although in one sense it became addicting, on the other I just needed a break from the "so how's Colby today?".
Believe it or not, I haven't even been taking too many pictures. Tracey has become quite the photographer and I'll need to upload some of her pics and put them on the blog. Maybe tomorrow.... hehe

Some pics

(I still love the Black and White ones of him)
(And Tracey is becoming quite the little photographer.)
(Colby laying on daddy. You can see a bit of the bandage on his head. That comes off tomorrow.0(Tracey took this of him today. She said he wasn't wild about wearing the had and started crying shortly after she took the picture.)

Nothing really to report. Colby is back in the swing of things. Eating every 3-4 hours and back up to his normal feeding amount, which now a days is around 90-110 cc's. He's not throwing up much either, so we're happy to see that at least for now, Colby seems to be recovering very well from his surgery. He's certainly more active and alert. He smiles more and moves his hands and feet about a bit more than before his surgery.

Colby's home!!!

Yup, Tracey brought him home around dinner time! Amazing!!!! One day he goes into the hospital for surgery on his head. The next day, he's home!
All in all he's doing well. He was up almost all day with Tracey, so tonight he's really groggy. He still has a bandage on the top of his head which will come off this Friday, but apart from that, you wouldn't know what he's been through.
Life is back to "normal" now that he's home. There's no real precautions or special things we need to do. We'll just watch his head growth and watch for any signs of infection or the return of his hydrocephalus. He'll go back for ultrasound and/or MRI's over time to monitor his situation.
I'll try to get some more pictures up tomorrow. Thank all of you again for your well wishes, comments and e-mails!

And some pictures

(Colby Pre Op: We were laughing because he had to be put in hospital clothes. But....they didn't have any small enough for him. The first wasn't that bad, but the pants hung off him like two tubes dangling from his legs.)
(At times he would start fussing and Tracey would walk him up and down the hall outside our little room where we waited for the surgeon to come get him.)(And Post Op: Look at how he's holding mom's hand. He was really pretty out of it, but he still wanted to hold our fingers. You can see the little bandage at the top of his head. That's the only marking he has from his surgery.)
(When we last left the NICU, we thought all those montiors, wires and alarms were behind us. Well, now we're hoping that THIS time...all those montiors, wires and alarms are behind us.)

(Colby and daddy)

(Mom giving Colby some formula...which he later threw up. Poor little guy is all wired up again.)

Colby did well last night. We called the ICU to check on him as soon as we got up. The nurse said that all in all he's doing wonderfully. He is having trouble keeping his food down and they need to keep an eye on that. But apart from that, he's awake, he's interacting and doing well. The nurse said that she was under the impression that if he can start to keep his food down, he may come home today. However, we've learned not to get too excited as things have changed time and time again. So we'll keep everything in limbo until we talk with the doctor later today.

We feel so relieved that Colby has finally had something done to address his hydrocephalus. I can't wait to see if there's a noticable difference in his interaction or progress. All in time I guess.

Post-op update

Before Colby went into the OR, the doctor came to explain the surgery. He was going to try to do the endoscopic third ventriclostomy (ETV) to avoid having to do a shunt. He said that the ETV would take about 25 minutes. Or if at any point they needed to abort this and opt for a shunt, it would tack on another 25 minutes or so.
Colby went off for his surgery and Tracey and I went into the waiting room where there is a screen that shows the status of each operation taking place that day. The screen had the patient number, the doctor’s name and the time the surgery was to begin. Each would turn different colors depending on the stage of the operation, Blue was if the patient was in Pre-Op, Purple once the operation began, then Green when they were in Post-op….you get the picture. It looked much like the screens you see in the airport terminals showing the status of each flight. So we watched as Colby’s line turned Purple and we knew he was in the OR. 20 minutes ticked by…..then ½ an hour….then 40 minutes…. We tried not to read too much into the time that was going by, but you had to wonder where things stood. At about 45 minutes his status changed to Post-Op. Within a minute or two the door to the waiting room opened and in came the doctor, his face still covered with all the masks and goggles from the surgery. He gave us the great news that Colby has come out of his surgery without a shunt!!!!! YIPPPPPPPPIIIIIIEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!! The doctors said that his surgery went very well. Blood loss was minimal. There was so much pressure in Colby's head that when they put the endoscope into his head, the fluid forced it's way out the scope. He said all in all, things went great and given what he saw and how things went, he would give Colby about a 60-70% chance of a successful outcome. Part of what he does is to cauterize the gland or duct or whatever it is that produces some of the cerebral fluid, thus limiting the amount of fluid that could refill his ventricle. He said that this relatively new addition to the surgery greatly increases the chances of a successful outcome.

When the neurosurgeon came into the waiting room to talk with us, he started by saying "Colby is awake and very hungry and cranky!!" As we walked down to see him, we saw a couple of the nurses and the anesthesiologist that was in with Colby during his surgery and both remarked that Colby was hungry and a crankpot! LOL Yup..that's out boy! Don't mess with him when he's hungry!!!!

He looks well and just has a small gauze bandage on the top of his head where they went in. But apart from that, Colby looks great !!! We’re just so relieved that they were able to do this procedure and not put in a shunt. Plenty of people do have shunts, but the only problem they encounter is that they can fail, become infected and need to be revised over time. Colby’s operation isn’t without risks and possibility of failure. But if it works, it could keep him from having a foreign object placed inside him.

Colby is in the ICU where he'll stay at least one night. Tracey and I can't stay over night in this unit and in all honesty he's in good hands and we're tired from the stress leading up to his surgery. Not that leaving him doens't bother us, because it does, but I think that because Colby was already in the NICU for 122 days, we feel much more comfortable with leaving him at night in the hospital. I can image that a parent who hasn’t gone through this experience might be torn apart from the idea of going home while your son/daughter is at the hospital. But he’s pretty much out cold with the meds he’s on. Plus he’s in the ICU all hooked up to monitors and with the nurses watching over him. So we'll head home tonight and get some much needed rest. Then we'll be back at his bedside in the morning.

Morning of Colby's Surgery

Well, Colby is off to the hospital. Tracey's bringing him there. I need to wrap up a couple things with work and will meet here there. He's scheduled for to go into the OR at 10am, though they said that if any emergencies come up, that his time will be bumped. He had some apple juice around 5:30, so doing the math, around 8:30 or so he will be hungry and cranky. That's 1 1/2 hours before his surgery and if things get delayed...maybe even longer. That will probably be one of the hardest parts...just not being able to do much to quell his hunger while we wait. That's about it. I want to get done what I need to so that I can meet them at the hospital. Thank all of your for your comments and e-mails. I will post an update when I have more information.

Yet Again

(Pictures from earlier this week)

I should have expected it I guess. I'ts happened before and now....once again....a slight change in plans.

Colby's surgery has been put off until Tuesday. We need to have him there by 9am Tuesday morning. Nothing to eat after 4am. We're unclear regarding how long he'll stay there. It depends on if he ends up getting just the ETV or if he needs the shunt.

Tracey and I are a bit relieved that he's having surgery. His head continues to grow, though not as fast as it was a couple days ago. But we notice that the left side of his body is notibably less active than the right side. For instance I was changing his diaper today and his right leg was kicking around....but his left leg was moving. It's not that he doesn't move his left side at all. He'll move his arm, his hand and his leg. But it's just less...and and times much less than his right side. So anything we can do to releive the pressure on his brain and hopefully move on from the hydrocephalus would make us very happy.

We've been working on helping him with his head control. We simply prop him up and help him keep his head up. Depending on how tired he is, he sometimes keeps it up well and other times lets it roll around as if his neck were a string. Poor guy. When I use my hand to help his head up, I can feel the weight and it can't be easy for him.

He is tracking with his eyes very well. A couple weeks ago, if you moved too quickly, he'd loose you. But now he's watching things around him and moving his eyes along.

So that's it, just anxious to get this up coming week behind us. With all that's been going on I just haven't felt very social and thus haven't been posting much.

Thank you all for your thoughts, comments and e-mails. Colby is certainly not alone and that makes me feel good.