What a long way he's come

First of all, thank all of you for your comments and e-mails. It continues to amaze me that after almost 7 months now, people continue to follow and be interested in our story.

Colby is having another good day today. He continues to use his hands a lot today, either grasping them together in front of him or grabbing onto things. It's funny because he seems to plateau for a bit, then move forward with things. But with his history of surgeries and being in and out of the hospital, I guess it must be extremely hard for him to build much momentum when it comes to learning how his body works and how to interact with the world around him.

I'm dragging today....pretty tired. I had had a long week. It was just last week that he had his surgery but it feels like weeks ago. So last week wrapped up with Colby getting surgery, then trying to recover from that, then his troubles with his belly, a trip to the emergency room....ow ...and on top of this trying to be a father, husband and run my business and be there for clients. I know...what a sob story, right? I just need to vent. I'm tired and simply can't wait for things to mellow out....fewer trips to the doctor, at least a couple weeks without surgery or some medical emergency.......and some sleep. It will come. All in time.

Sometimes I just sit and watch the slide show at the top of the blog. Although the memories of all that we went through are still vivid, at times they seem like something from years ago. And sometimes when I think "boy, Colby is going through a lot" I just look at how far he's come. Born 1 pound 15 ounces and then dropping to under 1 pound 10 ounces.....he now is over 10 pounds. Scares of ROP, possible vision problems or even blindness.....now he looks for us he hears our voices. A brain bleed and hydrocephalus that lead to talks with doctors about cerebral palsy and motor skill issues......although we're by no means out of the woods with this yet, his muscle tone is wonderful (not too stiff or too laxed), he moves all his legs, arms, hands and feet. Worries about him not being able to eat properly and other babies in the NICU having to get GTubes....and now he eats like a champ. Just so much to be thankful for and to look forward to! I know many of you who follow this blog also have children, some of them preemies. And from what I've gotten to know about some of you, it's amazing to see just how strong children are and how much they can prove doctors wrong. Boy that's a wonderful thing!

I've mentioned before that this blog is a way for me to vent....express myself and keep friends and family abreast with the latest happenings with Colby. Although I've found it much more difficult to find the time and energy to write lately, today is a perfect example of how I start writing, not really knowing what I'm going to write about, but end up wrapping it up feeling 1,000 times better. Thank all of you again for your support and for taking the time to read our story

A good, good day

( " Ow please daddy, please let me stay up late tonight...")


(What a strong boy holding his head up!)(Daddy and his little boy....kinda a whacky way to hold him but it worked at the time. I didn't realize it was pulling his pants half way up to his ears. )

It's been a long couple days. Ever since Colby had his surgery he's been a mess. Just extremely fussy, crying uncontrollably at times and totally inconsolable. And that's not at all like him. Some of the tests from the doctor have come back and they don't show any virus in his belly or anything.
But yesterday Tracey had had enough with poor Colby being totally upset and with us not knowing what was wrong. It looked like Colby's belly was getting bloated so she called me to let me know she was taking him to the Emergency Room at the children's hospital. I met her there around 10:30 in the morning. They examined him and did Xrays. The good news is that nothing showed up. At around 2pm Colby was discharged and we were told that he more than likely just had a bit of a stomach bug or something that may have been made even worse by his shunt draining into his belly.
So what's so good about today? Because when I got home today, he's much more like his old self again! Not too fussy and very alert and looking around. That just put me in the best mood. What's more, we've been working with him to use his hands to try to grab at things. For a good 5 minutes or so, I would put him in front of my face and he would grab at my chin and lips and hold on pretty good. Then I put him on his pillow and he was lifting his head up really well. He has a favorite stuffed dog that he enjoys playing with so I propped him up on my lap and put the dog in front of him, propped up as if it was another baby. Colby was looking at him, grabbing the stuffed dog's paws. Just great to see Colby progressing!!!!!!!! I think any parent is thrilled to see their child do things. But when it's unknown what your son will and won't be able to do in life, seeing him do something new is just amazing!
It just goes to reinforce our belief that Colby will be able to do a lot and that if you put in the time and effort, good things can happen!

Troubling tummies

Just a quick update on the Colbster....
Ever since his surgery, he's been extremely uncomfortable, crying, fussy and generally not himself. He's eating OK, but his sleep is interrupted with him waking up crying. When he is awake, better than half of the time seems to be him squirming about, fussing or crying. Thus far we've gotten a couple possible explanations, each of which point to his belly.
First, the tube the drains his fluid from his head empties into his belly area. It doesn't go directly into his stomach or anything like that, but rather into the general area where the blood vessels in his intestine and all absorb the extra fluid and pull it into his digestive track where it's either taken in by the body or passed through. So this in itself could cause havoc on his belly.
Secondly, it's been suggested that the strong antibiotics that he had to take after his surgery could have killed the good bacteria that he has in his intestines, thus leaving them relatively unable to digest correctly.....and extremely uncomfortable.
Either way we have an unhappy boy on our hands and are currently getting very little sleep at night. Tracey has been wonderful by following up with the doctors and trying to hunt down some answers and some solutions. She's at the doctors right now and hopefully in the next day or so we can start to get poor little Colby's belly back in order.
Apart from this...he broke the 10 pound mark. He'd been hovering just below this for some time now but at his visit just yesterday, they confirmed he's over 10 pounds. His head and the rest of the tubing at least thus far seem to be healing without complications (knock on wood).
He's got some follow up appointments with the pulminologist and other doctors this week and next in addition to now this new hunt to get his belly on track, so we're plenty busy. Given this my updates will most likely be sporadic at least until things settle down. Hopefully I'll get some more pics up soon.

Just an adorable little video

Maybe Colby will one day do a simular version of a Dave Matthews song. If so..which one would be best do you think?

Home again

(Hamilton watching over his little brother)

( I still love the black and whites. The above three are from this morning while he was still in the hospital.)

Shortly after I wrote my last entry, Tracey came to the hospital and relieved me. I came home and took a nap for a couple hours. She called me around 3:30 to let me know Colby was being discharged today. So I headed back to the hospital to pick them up.

Colby is doing very well. Much less cranky and very alert. I think he's still feeling a little off from the last couple days. But it's a night and day difference over last night. He's eating just about his normal amounts and times. Hopefully by tomorrow, everything will be back to normal.

The neurosurgeon said he'd call us on Monday to set up a post op visit. We need to keep Colby's two incision sites dry for a couple days. But apart from that, there's no extra care needed. Simply amazing what they can do these days.

In some ways, I feel relieved that he has a shunt. No more measuring his head or wondering if the hydrocephalus will come back. We will need to watch for certain things with his shunt now, but that's all "repairable".

And so closes yet another chapter in the journey of our son Colby.

Frustrating

The neurosurgeon came in about 45 minutes ago. I had fallen asleep on the couch and woke when I heard him talking with Colby. He said that Colby looks good all in all. He would like to try to send Colby home after 1pm when he gets his last dose of antibiotics. But he needs to be eating regularly and to be less fussy. Colby ate at around 9pm last night and then again at 4:30 and 8:30 this morning. So not at all like his normal schedule and he's taking only about 40-70 cc's eat feeding. Maybe as the day goes on he'll fall back into his routine.
Last time Tracey and I were here, we weren't impressed with the staff here and I'm afraid to say that we're having the same experience. The doctor is GREAT, it's more the nursing staff. Colby got a dose of pain medication while he was in the recovery room. Then when he came up to his room about 45 minutes later, they were drawing up a needle to give him it AGAIN! Tracey was in the room and told them he already got it so they stopped. Then I had told them he needed Pregestimil 24 (the 24 is the amount of calories in each ounce I think). They said they'd put in an order for some. That was around 5pm. At around 8:30 last night I rang the nurse and said he was ready for his formula. She asked what kind!!!! I wasn't that nice to her. About 20 minutes later a DIFFERENT nurse comes in with pregestimil 20! The wrong one! I explained this to her and she seemed aggravated.
Then this morning after the nursing shift change, the new nurse took Colby's sheet and said "Ow, it looks like he took about 140 cc's last night around 7pm....and ...um....40 cc's this morning again at 7am?" Totally wrong! I'm an easy going guy...sometimes too easy going. But this is just ridiculous!
Then the doctor comes in and was checking over Colby. The nurse came in and had the scale to weigh him. As the doctor was checking out Colby, I could see that the nurse was getting impatient. Finally she stepped in and said she needed to get in to weigh him. A little thing but if the freaking doctor is checking over my son after surgery, you can wait to weigh him! She said "Ow, so he's going home today.". The doctor said " Well, if he's showing signs of discomfort or not eating right, we'll keep him." The nurse says "Ow, but he ate some last night" I piped in at this point and said that he's not himself at all and the doctor looked at the nurse and said we'd keep Colby until he was acting himself. She said "well does he still need the IV? maybe if we shut that off it'll make him hungry again." I don't know, but that pissed me off. He's been on IV's before and still eaten. The doctor and I were talking about how he was fussier than normal and the nurse was listening to all of this. After the doctor was gone she went to weigh him and he didn't fuss too much. As she was putting him back down on in his bed she commented that "I don't think he's in that much pain. I mean when a child is in a lot of pain, they'd usually get really upset when we move them."
I'm keeping track of all of this and after we get discharged today, I'm going to write the hospital. It's not just one thing but rather item after item. And if fairness, it's not ALL the nurses. And it's certainly not the doctors. We're very pleased with them. But there just seems to be a major lack of communication on the floor.

1:45am posting

(Deja vu)
(Pictures from just a couple minutes ago. He's more alert now than he was before. But still not happy about his current condition.)

Nothing too new to report. But when you're sitting in a hospital room at 1:30 in the morning, pretty much wide awake, what's there to do but update your son's blog, right?

Colby slept for about 4 hours. He was out cold. Then he woke up around 12:30 and has been fussing a lot ever since. He'll settle down for a couple minutes, then started crying again. They're giving him some pain medication, but I can tell he's still in a lot of discomfort. His belly is bothering him too and that's just adding to the problem. It's hard because when he gets going, there's just nothing that seems to make him feel any better. I'm hoping that as the morning comes, he'll start to feel a little better.

An update from Colby's hospital room

(Poor Colby. He's one unhappy camper tonight)


(My sleeping sweetie)

Colby's surgery seems to have gone well. He was scheduled to go into the O.R. at 1pm, but as with many surgeries, he didn't get in there until close to 3pm. He hadn't eaten any formula since 5 in the morning, so at times he was a bit fussy. But all in all he was such a good little boy and didn't fuss to much at all. Even the nurses commented at how well he was doing.

After the surgery the doctor came for us again in the waiting room and updated us. Everything seemed to have gone well. Nothing unexpected. He has a small incision on his head and another on his stomach. They threaded a tube from his head, just under the skin, all the way down to his belly where the fluid will drain out and be absorbed by his body. The shunt itself doesn't seem too noticeable. Colby doesn't have much hair on his head so it's probably much more noticeable now than it will be over the years. They put extra tubing in his belly so that over the years as Colby grows, there will be enough slack to keep the end down in his belly.

The doctor said that the biggest risk right now is infection and this will continue for the next 3 months. Should he get an infection we'll need to come back to the hospital. We'll keep our fingers crossed......

Poor Colby has been very fussy since his surgery. Nothing seemed to quell him. I think it's partly the anesthesia wearing off and leaving him feeling yucky and also the fact that he had two incisions plus a tube thread from his head all the way into his belly. That just can't be comfortable.

He's finally sleeping for the first time now. We're having quite a winter storm so Tracey just left about 1/2 an hour ago. She needed a break. She's got the strong motherly instinct that whenever Colby fusses, she's at his side trying to make him feel better. It would have worn her down being here tonight as I think he's going to be fussy but there's not much that will make him feel better. Just time.

And now he's got yet another bald spot on his head. He's got one on the back and on at least on of the sides of his head from when he lays down. He has another from his surgery a couple weeks ago and now this.

We were talking while Colby was in the OR that because of all we've been through, we don't think much of one of us going home while the other stays at the hospital. You HAVE to do that after months of ups and downs. It's just not practical for both people to be up all night. And this way she'll be rested so tomorrow I can get some sleep.

If all goes well, it's planned that Colby will come home tomorrow. I think it's too early to get any idea how he's doing. The nurses and doctors have pretty much just come in to take his vitals and give him some meds. Probably throughout the night as he comes to more they'll be able to better judge his condition.

So that's the scoop for now. I've got a really comfortable (not really) couch thing in his room that I'm going to lay down on. He'll probably be fussing through the night plus they need to come in and take his vitals every 4 hours. So I doubt I'll get much rest. But I can look forward to a good rest at home tomorrow. : )

Friday morning

Well....today's the day. No more formula after 5am. Nothing but Pedialite and water until 9am and then nothing at all after that. I guess Colby will stay on the normal Pediatric floor (not the PICU) after his surgery. It should be a one day stay and then he'll come home tomorrow as long as everything goes well.

We're having a winter storm up here in New England today. Not a big deal as the trip to the hospital is pretty much all highway. But we'll just have to allow for some extra time and take it slow.

Poor guy, he's got a bald spot that's a little scarred and swollen on his head from his last surgery just 2 weeks ago. And now he'll go in for this one.

He's pretty happy and content thus far this morning....looking around, cooing and doing his normal little sounds. Like I said yesterday, we're not thrilled he has to go for surgery again, but if this is what he needs, then this is what should be done. And the sooner we can relieve the pressure on his head, the better it will be for him.

I'm going to stay with him tonight in the hospital, so I'll bring my laptop and will send updates as I get them.

Thank you guys again for your support!

The never ending story

Well, it's been a couple weeks now since Colby's surgery. And things have been going very well. He's been very active, smiling and happy. I was out on appointments today when I got a call from Tracey saying that she noticed Colby's eyes were "sunsetting". This is when they look down for no apparent reason. She called the neurosurgeon and they asked her to bring him right in. I was at the other end of the state and had commitments through the afternoon. She was already getting ready to leave the house and bring Colby to the hospital. A couple hours later I got another call from Tracey saying that Colby's eyes weren't in fact sunsetting, but they wanted to do an ultrasound anyway. Another couple hours and another call back to let me know that Colby's surgery didn't go as well as he hoped and his hydrocephalus isn't getting any better. So tomorrow he goes back into the hospital at noon and is scheduled for surgery at 1pm.
We're a bit bummed, but also a bit numbed from the constant ups and downs. So we'll head into tomorrow just as all the other times. We're content that he'll finally have a shunt put in. It wasn't what we were hoping for but hundreds....or maybe thousands of people live with shunts their entire lives. There's a greater risk of infection and other problems over time. But we'll just need to deal with them. I'm not entirely sure about the recovery time or all that this entails. But as I get more information, I'll pass it along.
As for right now....a nice glass of red wine......

There's our boy!

And finally a couple pictures of our growing boy. You can see in a couple of them that he still has the bandages on his head. They're starting to work their way off and I'd imagine they'll be gone in the next week or so.

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.