Cooper and the Fam

Colby's First Year - Finally!!!

2011-04-18T00:26:00.004-04:00

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2010-03-09T19:55:00.002-05:00

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clip that you can email us!!!

A Sad Day

2010-02-01T16:19:00.001-05:00

Today is a very sad day for me. My good friend Art has passed away. I'm not sure if it was yesterday or Saturday as I was notified second hand from a mutual friend. Art was a great guy who I met while working at a local Farm Market. I met Art when I was 16 and we proceeded to work together over the next 10 yrs. He was about 20 yrs older than me and we had this uncle/nephew type relationship. Throughout this time we became good friends, who would laugh, argue, fight etc., it was more of a brotherly relastionship really. Art lived in Redford and when Jessica and I met we moved to Redford, Art and I lived only a couple blocks away from each other. Because of this I was able to visit Art quite often. Anyone who knows Art understands he went through some tough times in his life. I'm proud to say I was there for Art whenever I could be to help in anyway. We had connections on many levels, but most of all our love of UofM, the Tigers and working produce definitely kept us connected. As I got married and had kids Art and I didn't see each other that much and the phone calls became much less frequent. If you attended our wedding ceremony Art did one of the readings at the church. I last spoke to art, gosh, a number of months ago. Art left me a message over the holidays and I had planned on calling him back, just hadn't got to it yet. I thought of him often but took for granted the fact that I had all this time. I'm sitting here unable to believe that he's gone. I'm embarrassed to say that my good friend was never even able to meet Cooper and Colby in person. This devastates me as I would have loved my kids to know such a great guy. I always thought oh, I gotta take the kids over to see Art, but just always had a reason not to get over there. Its a huge cliche but you just don't know what you have until its gone. I'm mad at Art for leaving us. Really mad. I know he's in a better place now. Rest in peace buddy, I will miss you, Go Blue, I'll always look up and point to you when I sing "Hail to the Victors".

Picassocooper

2010-01-31T22:00:00.005-05:00

We got some artwork to show off from our little Pablo Picassocooper. He's been doing some really cool stuff at daycare and here at home and our basement door has become our own Institute of Arts! Coop did all the work here including his life-size Christmas Cookie Gingerbreadman, of course at 2 and 1/2 he still gets some help but he's been doing really well at getting the hang of making his own art projects and having fun at it too.

PS: Colby has his own little project, its the brown house in the upper left with his handprints on the top of the roof!

Cooper's Winter Olympic Gymnastic Preview

2010-01-31T13:40:00.002-05:00

Colby's Cruising Part Deux

2010-01-31T11:12:00.004-05:00

Colby's Cruising

2010-01-25T21:31:00.002-05:00

Well its been so long since I filled you all in on how Colby is doing. He is doing awesome. We're thrilled at his progress. In mid Dec Colby finally finished up being cycled off Phenobarbital, the pink nightmare as we like to call it. Imagine giving your 6 month old a vial of strawberry syrup, twice a day, NOT FUN! Try keeping that off your clothes, his clothes, the furniture, etc while your little guy fights you as he takes down each drop. Ugh, we were so glad to see that stuff go, not to mention what it did to the Big Cheese. About a week after he was fully off the Pheno, Colby was a totally different baby. He was smiling more, interacting more and started to eat! He just would not eat solid foods while on the Pheno. But now he chows down, just like he was before the accident. He's been progressing in many other things too. He now crawls like a champ, just cruising allover as fast as Usain Bolt. One second he's in the living room, next second he's across the kitchen. Colby started clapping the other day too. Colby continues to love his daycare and has some good friends there that he crawls and hangs with all day. The little guy also continues his weekly visits with the early-on crew who continue to evaluate and work with Colby on his overall development. Team Colby is going strong!

Blog to ya later!

Scott

So much to say!

2010-01-25T00:20:00.006-05:00

Wow! Its been over two months since my last post and boy do I have alot to write about. I'll be filling you in throughout the week about a crawling Colby, a singing Cooper, a busy Jessica, my busted knee (yes I couldn't make it out of 2009 without my own trip to the hospital), kiddie- sniffles, coughs, pink eye and throw up, a new year, new hope, and lots more. I'll be posting as much as I can throughout this next week and hopefully getting back on the blogging wagon.

For the time being here's a few photos of the Big Cheese and Super Dooper from the holidays, more pics to come too.

Blog to ya later!

Scott

Doctor. Doctor. Doctor and Doctor!

2009-11-16T22:19:00.003-05:00

Hey All,

Well we now have a little break from all these appointments so its a perfect time to catch you up on what's going on. Friday we went to our first appointment at the neurologist. It was good. We went over with the doc about all of Colby's minor seizures that we logged, talked about his progress and asked any questions we had. He said that Colby is doing really well. They checked out his vision and he seemed to do well with that. The test just involved the neurologist moving some objects all around Colby's head and watching to see if Colby was moving his eyes to see them or not. We also were able to see Colby's MRI. First they showed us his original MRI from right after the accident. Just a ton of different images of the brain, I could barely tell what was going on, but they did come to an image that had some bright white spots near the back of the brain. Those bright spots represented the damage done to Colby's brain. Then we saw the second MRI taken from to Thursday's ago. When we got to the same image in the 2nd MRI that damage had dulled on the MRI, meaning that his brain is starting to heal. It was great to see. He still has a way to go but it was very promising. We also have begun to take Colby off of his Phenobarbital. It'll be a month long process where we ween him off dropping it down a ml per week, until he's off of it completely. He will continue to take his Keppra for up to a year, but we are very happy to get him off the Phenobarb as it tastes very nasty and Colby hates it, he has become a master at coming up with ways to push it out of his mouth. We will go back to the neurologist in a few months for another follow-up and no more MRIs in the near future as long as Colby continues to progress. So all in all a good appointment, progress is being made and we are so happy and thankful that Colby continues to improve everyday and fights for what we hope to be a normal development.

From the neurologist we moved onto the Physical Medicine and Rehabilitation doc earlier today. It was a much quicker appointment then the neurologist. The doc just checked over Colby, looking at his muscle tone and checking his joints. She did notice that his left ankle was much more loose than his right. His left leg is where he had a number of his minor seizures. So we will be keeping an eye on that over the next few months and it may result in Colby having to wear some sort of brace on his leg as he develops. We also continue to watch this weird arching of his back that Colby does. He is constantly doing it and no one is sure if its just him trying to get another view or his way of moving around right now before he crawls. Everyone is kind of perplexed about this specific thing, we'll all keep watching to see if it goes away. We will also probably be meeting with a speech therapist to help with Colby's eating. We aren't there yet but if he doesn't start taking solids within the next 3 weeks we're going to get some help. Once we get the eating thing down hopefully sleeping through the night will fall back into place. We will also be meeting with an opthamologist to make sure Colby's vision is on track. The damage done to his brain was in the area that affects vision so its something we will constantly be watching. But all in all another good appointment, the doc said this stuff is all minor right now and we'll be keeping a close eye on the Big Cheese!

Blog to ya later!

Scott

A Quickie

2009-11-16T09:13:00.001-05:00

Hey All,

Sorry for the short post, it was a busy weekend. But Colby is doing really well! The trip to the Neurologist went really well and we go to the rehab doc this afternoon. I'll write this evening about everything.

Blog to ya tonight!

Scott

Colby's doing well!

2009-11-11T20:23:00.003-05:00

Colby laughing it up!

Colby has been keeping us up lately! Actually these are my replica Playdoh eyes.

Cooper copying daddy, I forgot its probably not good to show a two-year old how to shove playdoh in your eye! :)

Our smiley guy is back!!

Coop hanging with Pops while I rake my life away.

Hey All,

Well our little guys are doing well, still getting over the coughs etc but fevers seemed to have disappeared. Colby had his "6 month" checkup today. He did great. He's doing really well. The doc said that he is doing everything a 6 month old should be doing. So that was nice to hear. Growing like he should, he's up to a little over 15 pounds. Our main concerns at the appointment were talking to the doc about Colby not really eating solids yet and his not sleeping through the night, both things which he did before the accident. The doc said to just keep trying to get him to eat, trying to feed him once a day and get him used to putting things in his mouth. We think part of it may have to do with all the meds he's had to take and how he hates taking them. We'll also be able to get some more info from the Physical Medicine and Rehab doc, Dr Green, on what to do. We think he's really made some strides this past week as he is babbling up a storm saying mamamama, bbababab, dadadadadd and he's sitting up really well too. Very exciting. Still one of the worst things is giving him the darn meds. He locks his lips and has learned to push it out with his tongue, he's one smart little cookie. So we keep plugging away.

I haven't really mentioned it but we LOVE our new daycare. Its awesome. Everyone there is great and the kids have been doing awesome. Coop has been doing cool art projects and we can tell he has really picked up alot of stuff already. He's counting great and came home the other day saying Turkey, Gobble, Gobble.

Friday is our big Neurology appointment w/ Dr. Mott. Hopefully some questions will be answered and we'll get the results of last weeks MRI. Keep your fingers crossed. I'm hoping that this appointment just confirms what we think is going on.

We went and fed the ducks up at Hines Park today, Coop and I brought out a bag of bread and we started to walk over to the ducks and I thought we were literally going to get trampled by ducks. It was Night of the Living Ducks. They were chasing us down and staring at both of us like were bags of bread ourselves. Anyways we got to a fence that worked as a nice barrier and we're able to feed a loaf of bread to about 20 ducks.

"Hey This is Colby, I didn't know it was HIM!"

2009-11-08T10:51:00.003-05:00

Well, guess what, we went back. Yup that's right we had to go BACK to Mott again yesterday. Everything is fine but yesterday Colby spiked a fever of about 102 and we called our pediatrician to let them know as he was kind of lethargic and really warm. In the meantime we gave him tylenol and he started to cool down and get his normal demeanor back. Well the doc called back and said being that he was intubated for his MRI he could have aspirated and could be getting pneumonia and we needed to get him checked out. He also had spit up some green stuff earlier in the day, just a bit but we did notice it. Had the pediatrician been open we just would have gone in to the office. But of course they were closed. SOOOO off to UofM we went at about 5pm. We just went to the ER and ended up being there for about 4 hours. When we got there he of course had no temp, but at one point it did shoot up to 103. They checked him over, irrigated his waxy little ears so they could actually look in them, checked his urine for any infections via a catheter (poor guy) and then gave him a chest x-ray which ended up being clean. We questioned the x-ray thru the resident, onto the fellow and then to the attending, as he's had so much radiation in his little life already but finally agreed to do it as the attending said we really should. All of that and really nothing came about. They said he has some flu-like symptoms but nothing they can really do. He is a candidate for TamaFlu but for babies it just ends up giving them worse symptoms so they like to hold off giving that to them if they can. His demeanor throughout this whole episode was pretty much his normal self so that was good. He was talking and smiling etc. We got recognized twice by the registration person and the attending on our visit and that is just not good! I mean come on ... this is getting borderline ridiculous! :)

So we'll just be keeping an eye on him all day and we just have to call the pediatrician if his demeanor changes at all today, just more stuff to watch out for!

Blog to ya later!

Scott

Finally, Back Home

2009-11-05T20:42:00.004-05:00

Hey All,

Colby is back home and doing great, we got to go back to recovery about 30 minutes after the last post. He was groggy but awake and in his phase 2 of recovery. Jess fed him seeing he hadn't eaten in like 9 hours, he was just a tad bit hungry! :) So he snoozed a bit, we watched some Cash Cab and then rolled out. Come to find out our recovery nurse thinks she was on call when Colby first came to Mott from his initial Survival Flight back in April. She was calming him after he arrived and came off the helicopter. Anyways, all is well, as usual the Mott staff was awesome! Our little MRI excursion turned into a 6 hour trip to Mott, which we thought would be an hour or two, what were we thinking. Hopefully Colby will use all the craziness of today to sleep through the night, lets hope so! :)

Blog to ya later!

Scott

He's In...

2009-11-05T17:04:00.002-05:00

Hey All,

Colby is being MRI'd as I write, he went in about 45 mins ago, should be done any time now. Then he goes to Phase 1 recovery and then Phase 2 so I imagine we're looking at a couple more hours here. Hopefully he'll be out soon. We have a pager like you get at Applebees so when he's done they'll page us.

Scott

Waiting and waiting and ....

2009-11-05T15:19:00.003-05:00

Here's Big Bro giving Little Bro a big smooch before leaving for his MRI!

Hey All,

Well we're at Mott in the pre-op room just waiting and waiting for Colby to get anesthesia and get this moving. They're backed up like crazy and were probably an hour away from getting in. Looks like a long day. Colby is a stud he hasn't eaten since 9am and he's doing well. The nurse has him right now and is keeping him away from Jess so he doesn't start crying at the site of Mommy. Colby is only half the worry as Mommy and Daddy may start crying soon if we don't get something to eat!

Scott

Monkey See, Monkey Do

2009-11-04T22:32:00.004-05:00

Hey All,

Here is my first foray into the world of iMovie. There are some kinks to work out but hey its my first shot. Definitely not as good as Jessica's, "Cooper's First Year" video (which is still on the blog located in 2008, July) but it'll do. But this is all from Halloween day. As we move into the the retail xmas holiday (November) and the real xmas holiday (December) not being far behind we all realize there are enough songs you could play a new one back to back for the entire month of Nov and Dec. But as I created my Halloween short I noticed there are very few Halloween songs. Sure, you've got your psycho theme, the Halloween Movies theme, The Shining and The Exorcist. You've got Monster Mash and some song from the Nightmare Before Christmas. But that's it. Some other random stuff but nothing. Is Werewolves of London a Halloween song? I don't think so, but iTunes says it is and if Apple says it is then it is, but I'm not buying it! Anyways I hope you like my choice, you been slimed! :)

Blog to ya later

Scott

Big Brother is Watching!

2009-11-04T16:45:00.001-05:00

No, I don't mean Coop, I mean all of us! Yup, we finally found a counter gadget so we can see how many people have visited the blog! Whohoo!

Now it also logs my clicks, but hey beggers can't be choosers. Its located right above our 2nd family blog portrait.

MRI day

2009-11-04T16:29:00.003-05:00

Big Day Tomorrow!

Its Colby's MRI day. I feel bad for the little guy as he has to go under for this so he doesn't squirm. More pokes. But we all know he's one tough dude so it's nothing for him. He can't eat after 10 a.m. tomorrow so come MRI time he may be a bit feisty! I'll do my best to update his progress via the blog.

While in Ann Arbor tomorrow I plan on swinging by Rich Rod's office at Schembechler Hall to see if he'd like to give a scholarship to Colby to start in the secondary this weekend. I figure a 6 month old baby will do just fine back there! :)

Check back soon for some photos from Cooper and Colby's Halloween hi-jinks!

Big Week!

2009-11-02T14:13:00.001-05:00

Hey All,

Big week ahead, its MRI time! We will be taking Colby to the 2nd official MRI. Hopefully we will be shutting doors on what it is that is actually going on with him and not opening new ones. We won't know the results until the following week. One nice note is that we haven't seen/noticed any minor seizures over the past few days. That's been great. Once the MRI is done we have a number of appointments coming up over the next couple weeks: Neurologist, Pediatrician, Physical Rehab and Early On.

Seinfeld-esque!

2009-10-29T12:29:00.004-04:00

Colby still has his minor seizures (when I say seizure think muscle twitch, we've all had them and that's what Colby's look like) pretty much everyday, just minor and only a couple a day, mainly concentrated in his left leg. But he did have a very funny one just the other day. I must say it is very weird and surreal to talk about a "funny" seizure your kid had the other day. Three weeks ago I would never have used the word "funny" and "seizure" in the same sentence. But I guess this is our reality and the little things that become normal can eventually bring out different emotions from, say, the first time you experience it. This seizure instantly brought to mind a Seinfeld-esque moment. You all know what I'm talking about. Numerous life events that we all experience, good, bad, funny, crazy, aside from absolute tragedy, can be related back to a Seinfeld episode. And if your specific incident didn't happen to come up in a Seinfeld episode you often can certainly see it being a focal point of one. To give an example of what I'm talking about (I have a ton, trust me) I think back to my days as a studly student on the campus of UofM. I was hanging out with this girl and we were just getting to know each other. Hanging out, talking. While we were conversing, I passed some gas, farted, tooted, what ever you want to call it. This incident was completely unexpected. I had no time to prepare. I was mortified, but this girl never acknowledged it, didn't crack a smile, give me a weird look, nothing!, Needless to say, I told all my buddys in the dorm what had happened and after incredible ridicule, people began to think maybe she didn't hear it. I couldn't imagine, there was just no way. I was absolutely embarrassed and eventually told my friend who had introduced me to this girl, what had happened. After expecting my friend to kick me for attempting to ruin her perfect streak of matchmaking by dropping bombs, she proceeds to tell me... "Oh, didn't I tell you she's deaf in one ear." WHOA! STOP THE CAR! WHAT!!!!! ARE YOU KIDDING ME! Wait.... a..... minute....., so there's a chance that this girl didn't even hear that. My first thought was I'm living my own Seinfeld episode. So this unbelievable exclamation started numerous discussions on our floor regarding the matter. Did she even hear it? Maybe she didn't hear it cause SHE'S DEAF! I was in my own personal controversy. A main point of contention was whether her deaf side was her right or left side, this mattered greatly to whether or not I was totally in the clear! Give me a grassy knoll, a second tooter and we have our own personal government conspiracy! To wrap this lovely tale up, my matchmaking friend was able to find out she DID hear the lovely noise and was okay with it, BUT we only saw each other a couple more times. If you can believe it, this story is the number two Seinfeld moment of my life. Yes, that's right, I have one moment that tops that, its close between the two as to which story should be number 1, but I think I've selected wisely. I'll reveal number 1 in a future post. Back to the dude I'm supposed to be talking about, Colby. Colby's little Seinfeld-esque moment occured Saturday or Sunday, can't remember now. We put him in his car seat and picked him up to leave, as I picked up the car seat he started moving his eyebrows up and down. "Hey, look at Colby, he's giving us the eyebrows!" You know the move when someone's trying to be cute, like the kid from Home Alone, they raise and lower their eyebrows. We instantly thought how cute and then started to think wait, he's a little young to be doing that, then thought wait is that an eyebrow seizure??? You can see how this progressed thru a whole gamut of emotions. It lasted only about ten seconds and I instantly thought this incident has Seinfeld episode written all over it. Obviously the baby would have to be replaced by a woman and she would have to be doing the flirty eyebrow thing to George, then George would go over introduce himself, say I noticed you flirting with me, she'd be eating dinner with her boyfriend he'd get mad at George and the girl for flirting yada, yada, yada... :)

Blog to ya later

Scott

Time to post already?

2009-10-28T23:36:00.003-04:00

Hey All,

You know that thing you do, something that you only have to do once a week? Like cutting your nails, mowing the lawn or showering? :) That's what my blog posts have become, something I only do once a week. Honestly that's not my master plan, but seeing that were back to real world time and off hospital time, I've come to one assumption, hospital time allows for alot more blogging time. In the real world its hard to squeeze the blog in. But, we'll keep typing away!

Colby is doing really well, he keeps progressing as the days go by. He has been rolling over now from his back to his belly and from his belly to his back. He has been talking more too, his vocab now includes a girly type scream and "blah,blah,blah" so that's been very exciting. He's also starting to sit up and very soon should be a sitting stud. He hasn't decided to go back to eating cereal just yet, but seeing him eat cereal before all this crazy stuff went down leads me to believe once he figures it out again he'll be eating us out of house and home. Colby also hates taking his medicine, OMG does he hate it. He cries and throws his head back and squirms, we feel so bad for him, the dose is large and it tastes bad, at least that's what we hear. We did get it flavored but I think now its just some nasty tasting strawberry stuff. So as we try to give it to him, he squirms, we miss his mouth or he chokes on it and we continue trying to maneuver this cheap little Walgreen syringe to get into his mouth. Its kinda like in Star Wars when skywalker and his boys are trying to drop the bomb into the death star to blow it up. They have to wait till they get to just the right spot and time it perfectly, me too. I'm in my little X-wing fighter and Colby's moving all around, his mouth on total lock down, then he calms for a second, opens his eyes, pops a little smile and BAM I swoop in and drop a shot of Phenobarb right in there, hit the target spot on. Then two seconds later I crash and burn as I push way to much in, he coughs it up and it becomes a red syrup-y nightmare! Probably how it looks on the set of some second rate horror flick. Red Syrup everywhere! This stuff stains too. Yuck! The worst part of not getting all the meds in Colby is obviously the worry that he won't get his proper dosage. Its one of those deals where he seems to be getting most of it most of the time. They did say to us, I think in the hospital, that if he misses some by dribbling or coughing it up, that its okay, but still we worry. Today we came at Colby together I held his head and Jess gave him the meds, it worked so much better. We got it done alot faster too. Which leads us up to his seizures.

Movin' Forward

2009-10-20T19:45:00.003-04:00

Hi All,

Colby is doing well, he is regaining his strength and starting to rollover again. He's playing with his toys and just getting back to his happy little self. Colby seems to have regressed back to like a 4 month old. He seems do be doing stuff that he did at 4 months, woobly body, just starting to rollover, doesn't want to eat cereal, stuff like that. But he is starting to get some of that stuff back. Sleeping has also been a bit of an issue. He used to sleep like a dream. I mean 10pm to 7am, like clockwork, not a peep. This started right after we came home from the hospital from heart surgery and got him off the feeding tube. Now he's up all the time. Sunday night he was up and down all night. Anyways, he had a decent Monday night, so that was great. Unfortunately, Colby started having some minor seizures again. We went 3 days without any then Sunday, bam, they started up again. So we called our Neurologist who upped Colby's Keppra dosage from .65ml to 1ml. He had 5 minor twitches on Sunday and 3 yesterday and 3 today. The neurologist said it would take a couple days for the new dose to work its way through Colby's system. So if he has more tomorrow we'll call again and they may have to up it more.

That being said tomorrow will be Jessica's first day back to work. Having to leave the kids is tough, I know Jess is bummed, but I like to think it'll all be okay. Mini Cooper and the Big Cheese will be heading off to their new day care digs. We are very excited for them. It's a great place with what looks to be an excellent staff with great experience. They each will have curriculum geared towards them and their needs and Cooper will be doing all kinds of art projects and fun activities while getting to interact with a number of kids his age. Its very exciting. Its also a little sad that we have to leave them again, especially with everything that has gone down. Unfortunately we don't really have any other options. We both have to work and this is the reality of the situation. We put together a seizure action plan for Colby describing what to look for and what to do in the case that a seizure occurs. If Colby has a seizure and it's minor then they will record it in our journal sheet we made for the teacher. We also included when to call 911 with a number of bullet points and the same thing for when to call us. The teacher was very confident and has had a kid as recent as two yrs ago who had seizure issues. We hope that nothing happens while Colby is in her care but if so I'm confident of the plan we have in place.

I'm sure there are people out there who would say how can you take your kids back to day care after this. It's easy really, we have to and we have to believe that this was a one time incident. We have to believe in the fact that they will get great care at their new digs. We have to believe that getting back to our normal lives will soon be coming around the corner. And beginning that process is getting the kids back to day care. If we had any major doubts about the kids safety or well being we obviously wouldn't do this, but we're both okay with this. We cannot let our lives be defined by this incident and let it scare us enough into altering how we would normally live. Don't mistake what I just wrote to mean we don't care, Oh we care. We probably haven't cared about many things more than we do about this. We've made changes, fixed things and a small part of each of us is changed forever from this incident. We will never ignore this incident or pretend it never happened. This incident is a part of Colby and I hope as he grows he views it as one small part of who he is. But we won't let it completely define who we are, or who he is. Obviously we will be upside down for a while, scared, confused, angry, concerned, up, down etc. ultimately we need to grow from this whole incident, learn from it and make the best of it, whatever that may be. I know that all sounds like cheesy lines from some ABC After School Special, but it all rings true.

Blog to ya later!

Scott

Home Sweet Colby

2009-10-15T21:55:00.003-04:00

Hi All,

They say Home is where the Heart is, we like to say Home is where the Colbster is! Yes that's right, Colby and Jess came home today, so did Cooper and just like that the fam is back together again. Colby is doing really well. The biggest struggle is watching him, any movements he makes you wonder, is that a seizure? Its a scary thing but something we'll just have to get used to. One of the many bumps on the road we will be traveling. We also picked up his medicine today. A big old bottle of Phenobarbital and a little bottle of Keppra. Its really frustrating to have to measure out these medicines and then give them to Colby. When you measure it you freak out, making sure you're giving the correct amount? Now its the Pheno that's 5ml right? And the Keppra is .65ml right, double check, triple check, quaddroople check. The phenobar is really bad tasting, so we have to get it flavored, Colby made this awful face when we gave it to him this evening.

So were kinda in the same boat as we've been the past few days no new real news, just playing the waiting game. We have numerous up coming appointments which will further open the curtains on what is coming for Colby in the future. MRI, Pediatrician, Neurologist, Phys Med and Rehabilitation, etc., etc.

That's about it for tonight, I'm about to fall asleep at the keyboard, night, night!

Blog to ya later!

Scott

5th floor vs. 6th floor

2009-10-14T20:31:00.002-04:00

So Ice Cube is still singing! Another great day for the Big Cheese. He made more improvements even over yesterday. He was smiling, locking eyes with us, tracking, etc. All great things. We finally moved out of the ICU and up to the 6th floor. I'm a 5th floor kinda guy, to be honest. I know more people down there and some of my peeps are in rooms down there. And the coffee is free! What's up with that, free coffee if you're in the ICU or have a heart kid and 25 cent coffee if you have a brain injury? Since when was there a class system for injured kids' parents? I'm going to the top with this one. :) Colby had his last IV taken out and he can now receive his seizure meds orally. He does have one MEAN case of diaper rash as the meds he's on give him some loosey goosey stuff, if you catch my drift. But otherwise he's doing great. He is cooing up a storm and babbling away. We're still in the waiting game for everything else, today at rounds they said Colby would now get a follow up MRI in about 2 weeks. The Neurology team also found an article that states Colby's type of brain injury can occur from a hypoxic event which means that they are leaning towards this as the diagnosis. But nothing official yet. We were also visited by the Physical Medicine and Rehabilitation team today. We'll be meeting them and following up with them as Colby progresses throughout however long we are going down this road to recovery. So that's about it round here. I'm heading back to work on Thursday and well be hopefully coming home soon.

Blog to ya later!

Scott

EEG-OMG!

2009-10-14T20:14:00.004-04:00

Sooooo...Colby had to have a 20 minute EEG today, just to check if any issues that didn't show up before showed up this time. This was much, much better than the 24 hour EEG that comes with the bandage and gauze helmet you've seen in some of the other pics I've posted. Now this video looks crazy. Yes the little man was taped to the bed, (to restrain him from squirming) wrapped up like burrito (also to stop squirming) and looked like he just filmed some crazy scene in Matrix 4. Playing the Restrained Burrito in Matrix 4 scene 25, Colby Drew! And it only took one take too! But through this entire 20 minutes, he pretty much just sat there cooing and babbling, it was the funniest and cutest thing we've seen in days. Aside from the scary look of this video no people or stuffed animals were harmed in the making of this video!

"Today was a good day"

2009-10-13T21:59:00.003-04:00

Hi All,

I know alot of you are following the blog and I'm probably not feeding your blog appetite with these once-a-day entries. I hope to get more than one post up in a day but its just been kinda draining round here lately. But that being said, like the famous rapper/actor Ice Cube once said "Today was a good day"! Colby did awesome today. NO SEIZURES! Yes we can officially say no seizures today. Now the only thing we knowingly have to thank for that is the medicine. The same medicine that knocks Colby on his cute little bootie every time they give it to him. He's in a daze but as his body gets used to it he'll react better and better to it. He was the most active and the most himself he's been since Thursday. He's been looking around, playing, cooing and babbling and giving us some hints of the oh-so-cute smile we so badly want to see. He's getting there.

So we spoke to the Neuro team again today and they really didn't have too much new info. They did have Colby's lactate test come back today and that was normal which was a huge relief. The past two lactate tests were high and if this one had come back that way they would've begun some metabolic testing. Those metabolic diseases can be really rough from what I've read. I'm quite proud of myself, I've completely stayed away from the internet diagnosis. As tough as its been, I refuse to freak myself out with all the awful things you can read about when you type a medical term into google. I say this to you as I did break this rule last night when I decided to look up Metabolic disorders. I really knew nothing about this topic and so I wanted to get a brief intro. I read a little here and there and then stopped. No more, thanks. So Colby will be getting another MRI early next week and that will really give us some info. See, when you have a brain injury show up on an MRI and you do a follow-up MRI too soon it can show a false positive and show no injury, giving you false hope, then 3 days later you'd do another MRI and the injury would show up again. The brain is a weird area and it can look as though its healed itself when it really hasn't in this small little window after an injury occurs. Anyways with this next MRI the Neuro team (Dr. Hoban, Dr. Mott and Dr. Foy )will be able to tell if the injury is progressing in the way a hypoxic injury should, if so we'll continue on that path. If it doesn't show this then we may need to focus on rare metabolic disorder testing or rare genetic disorder testing. But we'll head down that road only if we need to.

That's about it around here, nothing too much! :) We moved for the fourth time, still in the ICU just a few beds down. They like us around here. Colby is very popular. :) We should be in general care Wednesday, just waiting for a bed. I won't lie these past 7 days have drained us. Between this, looking for new day care (which we found at a great place in Livonia) and some other fun stuff, I think we're spent. Jess has been a superstar again, just like last time. Juggling numerous tasks and handling it all with ease. Not to mention we've been living in what constitutes a space the size of a bathroom for the past 7 days. We haven't gotten on each others nerves too bad! Well I'll be heading back to work on Thursday, just going to take Wednesday to make sure we have another good day here and then Jess will be holding down the fort here in general care. I'll be coming back up right after work.

One last thought, I was chatting with the dad of the family we met back when we here for Colby's heart surgery, the family from Kansas who are here for their sons second heart surgery. (Side note: I still cannot fathom that I'm seeing these people again. This is like the coincidence of a lifetime. I mean I hoped to keep in contact with them, but knew it probably wouldn't happen and here we are, just freaking crazy!) We were talking about how many amazing things go on in here. I know I've written about it before but it is mind-blowing. Yes, I know it goes on in every hospital and you can surely say it about those places too. But really sit back and think about all the kids in here and what they've gone through, overcome, or battled, its awe-inspiring. One dad the other day said everyone should be made to come here and walk through the ICU or PCTU (heart wing), he said life would be a lot different on this earth. It's totally true. Just witnessing in this short week what Colby has had to endure is more than I have ever gone through in my entire life, he's six months old. Like today, he had to have another blood draw. He was just sitting on his bed cooing away as this guy stood over him and poked him right in the arm, he cried for 30 seconds and then stopped. Now keep in mind he's had about 20, 30, 40 other pokes all-over his body. Yet he lays here today just content as can be. That is the definition of strength and he doesn't even know it yet, how strong he is. He is a hero to me. All the kids here are heroes.

Blog to ya later.

Doogie

Hey Doogie

2009-10-12T23:25:00.002-04:00

Hi all,

Its been another up and down day with the Big Cheese. Colby had a number of small seizures throughout the morning and afternoon. A total of 4 but they were somewhat different from the other minor seizures. These occurred on his right side instead of his left and started as twitching in the entire arm and moved down to the elbow, then down to the fingers. Kinda weird, they call it the Jacksonian March. Anyways, they were minor and Colby was alert the entire time of each episode. Due to these episodes he didn't get to leave the ICU yet. They did move us from the nice quiet secondary ICU back to the main ICU but were in a private room. He also is on a second anti-seizure med now to help curb these other episodes. It seems to have worked as he has been peacefully sleeping through the evening. We met one of the other attending Neurologists, who essentially told us its still a waiting game. They will be doing more metabolic testing and are still considering genetic testing which both would be HUGE coincidences if this all didn't go back to Colby's hypoxic event. Anyways were still looking to probably be here for about a week. The plan is to first get these seizures under control and get that all figured out and move forward from there.

Today at rounds it was pretty funny. Colby became a teaching tool for a group of Med students. Due to his transposition of the great arteries, the doctor conducting rounds began quizzing the group on different issues regarding Colby's TGA and how it could coincide with what happened to him. Like Jess said it was our own personal Grey's Anatomy moment. Some of the group were sweating and the Doc kept firing away, with no mercy. It was cool to watch and I felt bad for the group, they looked stressed. Now we've had a House moment and a Grey's Anatomy moment, now all we need is a... wait we had an ER moment, YES! the cycle! House, Grey's and ER all in a week. Now if I have a Doogie Howser moment, that's it, I'm done. Some 14yr old better not come into the room tomorrow, or I quit, but I am typing on my computer at 12:30 at night, just like Doogie, did at the end of each episode, so technically...nah...

Blog to ya later.

Scott

Some more pics of Colby and Cooper

2009-10-11T16:14:00.002-04:00

Here are some more pics of Colby and Cooper hanging out.

Roller coaster

2009-10-11T15:43:00.004-04:00

Colby peacefully sleeping today after getting a full little belly.

Hi Everyone,

Its about 3:45. Its been another roller coaster of a day. We were up every couple hours last night to feed Colby via a bottle which is a good thing. He's been eating like crazy all day. Taking 5 ounces one time, 7 ounces another, just chowing down. He even started nursing. The one bummer is Colby had a few more seizures this morning, nothing too bad but still a seizure. He had a couple, one of the seizures just involved his left arm twitching, but thru the seizure he was very active, talking and moving his other arms and legs on his own. It was the most active he'd been thru the morning. That was kinda weird. But these seizures seemed to occur because they think his phenobarbital was wearing off. So they gave him a new dose and he's been fine since. They also removed his EEG monitor. Every seizure he has had has been visible and clinical so they can see them without the machine, no internal seizures. Its great to have that off him because the whole helmet bandage and sensors really irritated Colby, poor guy. So we spoke to the Neuro team again and there is really no new news. Just playing the waiting game. They ruled out a metabolic disorder and are waiting to decide if they'll even do genetic testing. They continue to lean toward this whole thing being a result of Colby's hypoxic event. So alot rests on seeing how Colby does over these next hours, days and weeks. That will determine course of events and how we handle numerous different things. Wish we had more info but we just don't. The docs are telling us everything they know, we are all in the same boat. But Colby is unhooked from the EEG and IVs currently so he is sleeping in Jessica's arms in a chair in our room. He looks so peaceful right now. He also is doing alot more of his own cry and babble, its been great to see.

Jess, Laura and I went into campus this afternoon to have some lunch just so we could get out of here for a bit. It was nice.

That's it from here, watched Michigan lose it in the end last night and watching the Lions lose it right now. Oh well.

Blog to ya later!

Scott

Some nice pics of Colby

2009-10-10T19:05:00.006-04:00

I don't want to leave you with a bunch of photos of Colby looking all bandaged up, so hear are a few photos of him on some of his more cute and studly days! We put together Team Colby Drew (and Cooper too) for the Big House, Big Heart run last weekend were we finished our 5k at the 50 yd line of the Michigan Stadium, Colby was so stimulated after the run he had a huge smile on his face for most of the morning. We hung our Team Colby sign on Colby's bed here in the ICU.

Pics of today

2009-10-10T18:55:00.004-04:00

Our Team Colby Drew (and Cooper too!) poster on Colby's bedside.

This is the dreaded EEG monitor that watches Colby's brain waves.

Feeding Colby, that's "Greg" in the background. :)

Still Feeding Colby, he's going on 6 ounces!

Sleeping peacefully, the bandages on his head are to keep the sensors inplace for the EEG monitor.

Still sleeping...

What a difference a day makes

2009-10-10T18:27:00.003-04:00

Hi All,

Well its about 6:30pm. Colby has been moved to a different bed in ICU to an area called moderate care. Its a little more quiet down here, better for his EEG. No new news yet from anyone but he just looks so much better today then yesterday. He's still pretty much out of it but he's eating really well. Just got done feeding him almost 4 ounces from a bottle, he took it down great and he's ticked off right now, crying up a storm, all of this good stuff. Last night he was just not in a good place, overstimulated and moaning, had a small seizure etc. I woke up this morning just carrying the weight of the day ahead and kinda dreading it. But now it feels like a whole new world. He still has a long road and we don't entirely know whats going on yet, but just watching him making some kind of forward progress and hearing some optimistic words from the Neuro team makes us happy. Cooper came up today and we got to hang with him for the afternoon, that lifted us up to. They had a beach party up at the family resource center so we took Coop up there and he fished for a prize, built a marshmallow castle and learned how to surf on the carpet. He had a blast. It made us all smile just watching him.

We were talking earlier how we are living our own episode of HOUSE. I'm sure most of you are familiar with the drama on fox about a doc trying to figure out medical probs. Were just waiting for Hugh Laurie (House himself) to walk in, cane and all, and tell us off.

Like I said no new info yet, as soon as we hear anything well let you all know. I'm guessing nothing today. Colby's currently ticked off and were just trying to calm him down.

We also have a male nurse on this shift right now, which is totally fine, but I can't help think about the movie Meet the Parents, with Greg Focker, who's a male nurse. When DeNiro says, Greg's in the medical field...he's a male nurse! Just put a smile on my face.

Scott

Making Some Progress

2009-10-10T11:41:00.003-04:00

Hey everyone,

Sorry the info around here can be slow to come by. Colby is having a good morning. He made it through the night without any seizures. He had a minor one around 11pm, but no more after that. Jess and I slept in the waiting room last night along with a number of other families. We all had a nice little dump session on what each of our kids is here for. We feel like veterans now as two of the families were getting the same surgery that Colby had 6 months ago. We relayed to them how well he has done since then. Anyways, Colby was sucking on a pacifier this morning so Jess asked if we could feed him. He took down an ounce or two via bottle. We were very excited! He was also making some normal-ish baby sounds and moving his arms and legs all around somewhat like he usually does. These are all very good signs. We just spoke to the neurological team. Finally some solid information. The part of the brain that is affected is the area of the brain that deals with vision. Its the part of the brain that makes a connection to what you're seeing and what it actually is that you're seeing. Dr. Robertson says that Colby's brain is not damaged, just injured and mildly at that. The swelling is somewhat minimal. All good things. I'm taking away from this that this injury can/will heal up. The one issue that the team is currently focusing on is the area of the brain that is affected. This area is not often affected due to a hypoxic event (lack of oxygen). So because of this the team is somewhat baffled. They will be doing testing to rule out a metabolic disorder or a genetic issue. This is the current plan-of-action. Its a wait and see period right now. But Colby is on phenobarbital to stop any seizures from happening and still being monitored via the EEG brain monitor. I feel he's making some small progress and the neurological team seems optimistic, so are we. He's got so many docs coming to check on him, some just to see how he's doing.

On a lighter note Jess and I watched the Office on our computer last night for some good old comic relief. I hope to watch at least some of the Michigan game tonight for some distraction too. I know if we were at home Colby would want to watch it so somebody has to tell him what's going on, right! :)

Thanks again everyone for your thoughts, prayers, prayer chains, messages, voicemails, everything. We listen or read them all and thank you again and again. This seems like deja-vu from 6 months ago but also like last time I think its really working.

MRI is done

2009-10-09T18:51:00.002-04:00

Hi,

Colby just got back from his MRI. He's back in the ICU and resting. They put on his lullaby and he fell right asleep. We don't have any results yet. Unfortunately he has to go back on the EEG machine which monitors his brain waves as he had a very small seizure around 2pm and they just want to continue to monitor him. He had it because his brain is still swollen and some of the meds he was on to prevent a seizure from happening were wearing off, which they put him right back on. Poor guy has to get more sticky pads put all over his head. Anyways our next thing is waiting for his results. He also will get a spinal tap pretty soon to rule out Meningitis. His vitals are stable and he continues to breathe on his own, GO BIG CHESSE!

Thank you everyone for your prayers and well wishes we are reading them all and appreciate everyone of them, your support means so much to us.

Some good news?

2009-10-09T11:36:00.004-04:00

Hi all,

Well its about 11:30 and we just met with a neurologist. She was very optimistic. The damage that they originally saw in the ct scan they think could be a technical issue with the ct scan itself. If that's the case there's nothing like scaring the living crapola out of us. But we'll know more for sure once Colby has his MRI which is scheduled for 4pm. We may not have the final results until tomorrow morning but we will keep our fingers crossed that they get us some answers not too long after its done. He currently is sleeping and is pretty much out of it do to all the meds he's was given in the ER. So much that he may sleep till tomorrow. They are playing some lullaby music to calm Colby down at his bed as he was a tad bit agitated and that seemed to help him, he's sawing logs right now. The EEG brain montioring they did all night didn't really show anything negative, it all looked pretty normal. There was one little area that did show some slight focaling. That they think is probably the location as to where the seizures may have been coming from. So all in all a little news that could be good in what has been a rough couple days. Blog to you soon if any updates come up.

Colby Drew

2009-10-09T02:36:00.002-04:00

Well its back to blogging and I wish it was for some happier times. We're back at Mott Children's Hospital, second time this week. Thursday Colby slept almost all day, waking up only to feed a bit and go back to sleep. He didn't seem himself. Jess called U of M they said he could be just tired, maybe he picked up a virus, etc. They told us to watch for seizures, etc. Jess asked what to watch for in that case and hung up the phone. No less than 5 minutes later Colby had his first seizure. Jess was changing his diaper and he started to shake a bit. We called 911 and Livonia Fire Rescue came out. He seized for about a minute and stopped just before the ambulance arrived. He was doing fine at that point. We had him taken to UofM, to be with the docs that know him best. On his way to the hospital he started to have seizures again. When I arrived at the ER, he was seizing and they were trying to get IVs in him. It took 6-7 tries all over before they had to do some special IVs in his leg. He continued to have a seizure for about 2hrs total. It wasn't major shaking, more like a twitch. I have to say I wasn't sure what was going to happen and was preparing myself for the worst. Jess never left Colby's side giving him words of encouragement all the way thru. He does draw alot of attention let me tell you. All these people were gathering around in the ER. That to me is not a good thing persay, which was having me worry even more. But just as they were about to intubate him to help stop the seizures, he stopped seizing. Thank God! At that point they rushed him off for a CT scan of his head. He was breathing on his own at this point too which is a great sign. Colby was admitted to the PICU which is attached to the PCTU (this is where we were for the heart surgery) so we are very familiar with our surroundings. They are trying to figure out what caused him to have the seizure. They were thinking meningitis and were going to do a spinal tap but then decided against that. They noticed some swelling in his head thru the fontanel. They double checked the CT scan that they originally thought was fine and noticed some possible damage to lower back part of the brain. I say possible because we know very little right now. We are awaiting the nuerosurgeons to come in tomorrow morning and talk to us. Currently they are monitoring his brain through an EEG. This watches his brain waves through 26 electrodes placed on his head. We'll know alot more tomorrow.

Please keep Colby in your prayers, he really, really needs them right now. He is such a STRONG dude. All that he has gone thru in this past week is just amazing and we continue to remain positive. I'll update as much as I can to let you know what's going on.

Cooper's 2nd Birthday Cake

2009-07-19T18:56:00.002-04:00

Press play - it is a video of our seven hour cake making experience!

Long time, no blog!

2009-06-21T22:48:00.007-04:00

Colby, tube free!

The Brothers Hilling

A Colby close-up!

As George Costanza from Seinfled once said, "I'm Back Baby!" Well first let me say sorry! Ever since we stepped foot in the door its been a non stop whirl wind of diapers, feedings, medicine, pediatricians, cardiologists and very little sleep. We needed to do some serious Colby focusing and the blog is one of the things that ended up falling thru the cracks. So for those of you who were following religiously I'm really sorry. But it was all worth it, every bit, as Colby is doing awesome. He finally seems to be a normal baby. Feeding tube free, Colby is loving life. He's smiling, starting to coo and starting to get on track with all of his normal developmental milestones. He is doing really well with nursing and takes a bottle any time that is needed too. But he is currently not taking any supplements and having great weight gain. Last week he put on 9 ounces. He's up to 9 pounds 15 ounces. He's also growing in height as he just reached 24 inches. He started out at 7 pounds, 7 ounces and 21 inches. His incision his healing perfectly. It looks great. His incision did get slightly infected a couple weeks back but he got some antibiotics and it cleared right up. He also had a few sutures pop out that U of M had to pull out but nothing too major. We took him to the cardiologist on Friday and they said he was doing great. They took him off his two stomach medicines, Zantac and Reglan and left him on his two diaretics, Lasik and Aldactone. But he only has to be on those for about one more week. Then he'll be medicine free, finally. I'm waiting for U of M to give us honorary nursing degrees after all the meds we've given over the past month and a half. The cardiologists mentioned that Colby has a small heart murmur, but its nothing to really worry about as hopefully he'll grow out of it. If not a procedure would have to be done in the future but again its nothing to be concerned about right now.

Cooper is doing really well and has totally adapted to having his new brother home. He does great with him. He's always kissing him and trying to hug him, although its often that we are telling him "gentle, gentle" as Coop doesn't quite grasp the concept that Colby is a baby and not a tickle-me-elmo doll. :) Coop is talking more and more each day and likes to tell us "Baby Crying" when he hears Colby.

I'll be updating the blog on a regular basis, I promise, again I'm very sorry for the month and half break. Please keep checking for updates, thanks everyone!!

Hey Bartender, Colby Needs a Refill!

2009-05-06T00:12:00.004-04:00

So this pic shows how Colby eats right now. Its the dreaded "NG Tube" or Nasogastric tube. If you're really into this, you can watch a how-to video on Nasogastric tube placement via YouTube. Yes Jess and I both learned how to do this and had to do it once before we left the hospital. It wasn't as bad as we thought but still not a pleasant thing to have to do to someone, especially a baby. Currently, Colby is sporting a 30 Day tube so he doesn't have to take it out for 30 days. The only way we will have to replace it is if he pulls it out, hence the band-aids on his face holding it in place. And let me tell ya, Colby is a regular Houdini when it comes to this tube, he did pull it out in the hospital a couple times, he's a sneaky guy. So we have socks on his hands so he can't grab it. When its time for Colby to grub, we take a small irrigation syringe and hook it up to the end of the ng tube. We take about 2CCs of air and push it through the tube via the syringe. Before we push out the air in the syringe we put our ear to his stomach, then we push out the air and listen for a "whoosh". When we hear the "whoosh" we know the tube is in the correct place. Then pull the air back out and we may procede with the feeding. We mix up a batch of his formula, heart defect babies need higher calorie formula. Then we warm it up and poor it into a feeding syringe. Its the large plastic tube hanging on the pole in this pic. Attached to the bottom of the syringe is a tube extension with a little piece that can stop the flow in the tube. We attach it to the pole via a velcro strap. Once its set with the formula and we've tested the tube placement, we hook Colby's NG tube to the plastic extension coming from the feeding syringe. Then we take the pump part of the feeding syringe and use that to get the formula flowing. The rest is done by gravity. If we hang it higher on the pole it moves faster, if we hang it lower, you get slower. Too fast, Colby pukes, too slow, you fall asleep watching it, so were always looking for that balance. Once he's done eating we disconnect the feeding syringe and clean it, then we push through about 2CCs of water through his ng tube to flush it, wait about 2 hrs and repeat. YUUMMMMY!

Home Away From Home

2009-05-05T23:42:00.002-04:00

Here are some pics from moving day. It was a weird day. We were scared, excited, happy and sad all in one giant shot. Scared to be on our own after all this great care, excited to get home, happy to be leaving with our son on his way to good health and seeing Cooper soon and sad to leave some of the other families behind. Luckily one family was in the pctu waiting area and I was able to give them our email so we can hopefully stay in contact.

In the car and ready to roll!

Big Bird greeted us everyday on our way to the 5th floor, Sorry Big Bird, nothing personal, but I hope I never see you again!

Leaving the 5th floor.

Just leaving our room.

Colby says, ahhh did someone forget me?

Weekend At Colby's

2009-05-05T23:28:00.002-04:00

Hey Everyone, Below are some pics of Colby from the past weekend while we we're still at the hospital. He was mugging for the camera in numerous poses.

Here he is during one of his few attempts at the bottle, he has told us he's not ready for that yet as shortly after this photo was taken some of that stuff in the bottle was later seen as some of that stuff on the blanket below the bottle. :)

Colby, shocked as he's told HE has to pay for the Survival Flight helicopter ride.

Colby sleeping next to the new helicopter his ride just paid for.

Night, night buddy

Mommy and me!

Welcome Home Colby

2009-05-03T21:48:00.004-04:00

After 18 days between Providence Park, Survival Flight, Motts Pediatric Cardiovascular Thoraic Unit, open heart surgery and General Care on Motts 5 East, Jessica and I were able to welcome home our son. The ink is drying on the first chapter in Colby's brand new life story and what a crazy, scary, emotional, rollercoaster of a chapter it was. If you put a number of chapters together you get a story. April 15th, as I sat in the special care unit about 15 mins after Colby was born, I wondered how many chapters would be written in this life story and would this story end before it really began. But soon after these thoughts things began to change and within the next 24 hours we would meet some of the most incredible people I've ever been in contact with. Through their information and knowledge, these amazing people began to write the pages that were the "Heart" of this chapter. They overwhelmed us with any and all information, set our minds at ease, performed their jobs, and then cared their butts off! They set the tone for this first chapter and hopefully what will be an entire story. They took what could have been a tragic chapter and a short story and flipped it over into a chapter about Colby's strength, will and fight and a long and healthy life story. Also helping to write this chapter were all of you, our family and friends. Through everything and anything you did for us, all of the well wishes, texts, phone calls, visits, prayers, emails, messages, cards, generous gift cards for food, home cooked meals, dog watching, Coop watching, lawn mowing, house decorating, you helped us through. We wouldn't have been able to get through all of this without your support, THANK YOU SO MUCH!

We know Colby was mentioned in many churches throughout the area in the past couple weeks and we just wanted to say thank you. We also wanted to give a couple special thanks for a couple extra special prayers. To Jessica's cousin Chris, who happened to be on a fabulous trip over seas said a prayer for Colby at the Western Wall, or Wailing Wall as its often called, in Jerusalem. Also to our friends Randy and Cat who lit a candle for Colby at St. Patrick's Cathedral on their trip to New York. I also wanted to say thanks to our friends Brian and Kelly Syska who gave Colby a rosary blessed by Pope John Paul II. We kept that on his bed his entire stay.

Well we hope the next couple chapters of Colby's life story are pretty bland and normal, this one chapter was enough drama for an entire novel. Talk about hearts, I don't know if mine can take another episode like this one. I think everything happens for a reason and I don't know yet why this incident happened but I think someday I will. All I know is that when Colby is old enough to understand we'll look back on all this and make sure he knows how many people were behind him. I just saw a cheesy commercial for some medical tv show and the tagline for the show was "all patients deserve a hero", Colby had quite a few in the past few weeks.

Colby's Casa es UofM

2009-04-30T22:48:00.000-04:00

The Big Cheese had an interesting day today he decided he didn't want his last chest tube and somehow thru Colby mind control made it inadvertently pop out. Jess was holding him and it just popped out. So that caused a little bit of frantic running around and nurse chaos, but all was well when it settled down. He still has it out as of 10:30p.m. and they'll give him ANOTHER chest x-ray tomorrow to see if the fluid level is fine, if its not they'll put one tube back in. He also had an echocardiogram to too. He's still in the same deal with his feedings, keeping some down and some not. Jess is staying the night again tonight and I'll be stepping back in tomorrow.

We found out today that Colby officially lives right here at the hospital, his official address is Colby, University of Michigan Hospital, Ann Arbor, Michigan. I always heard UofM wanted your first born child to be able to attend school here but I just assumed people were being facetious. THEY WERE SERIOUS! I love the U, but come on! Yeah its something to do with social security and stuff. We'll be moving into the Big House this weekend, I'll be having a house warming party May 3rd, Regrets Only :)

Coop is still at my parents having a good old time, getting over his small cold.

Colby is sleeping quietly, we'll be soon, pleasant dreams!

One Step Forward, One Step Back

2009-04-29T22:23:00.000-04:00

Colby is still doing awesome except he went back to his good ole days of throwing up his feeds. This seems to happen when they attempt to feed him 55 CCs of formula every 3 hours. They're going back to 36 CCs every 2 hours, where he seems to tolerate them more. They're also going to try to make a decision on his final chest tube hopefully after tonight's shift, dependent on the output.

Interesting note, Colby threw up during American Idol's cast off show, I like to think it was his absolute disgust in the fact that Matt got booted or is his personal commentary on the sad state of our current entertainment options. Either way, Colby has spoken(barfed, actually)!

Jess stayed the night here last night and will again tonight, lets wish her luck that the alarm sounding meds pump that acts up every night keeping her awake is going to behave itself tonight. I went back to work today, it was nice to get back to some normalcy.

Cruising along!

2009-04-28T13:51:00.000-04:00

Hey all, Colby is still crusing along, he's actually taken down his last feed without it coming back up. He's currently taking down his next feed and no signs of it coming back up yet, so we're keeping our fingers crossed. He is somewhat out of it as they gave him some medicine to...remove one of his chest tubes! Yup, he's one more tube down. One to go. The last shift his last remaining tube's output was 20 CCs so they'd like to see 5 CCs in one shift before removing it. So we're rooting for that. Some of the "normal" baby stuff is beginning to be metioned to us, hearing screening, circumcision, etc. So that's a relief too. We just found out Colby will need to be on the special formula he's currently taking for about 6 weeks. Its looking more and more like we may need to have him on the dreaded tube feed for a few weeks once he's home. I think we're gonna attempt to get him trying some bottle feeds here really soon, to see if he can take it.

I'll be heading back to work tomorrow as my time off is up. I took an extra day for today and will be back on the scene, tomorrow. It'll be nice to get back to work, some normal-ness, as opposed to all the craziness of the past couple weeks. Jess will be staying here at the hospital and I'll come over in the evening after work. Hopefully we won't have to deal with this situation too much longer. Once Colby comes home from the hospital I'll try to work something out so I can be home for a few more days to help out. Work has been so understanding with everything, I can't thank them enough.

Flew the Coop

2009-04-27T14:35:00.000-04:00

Coop has been, well, cooped up alot lately, the poor little guy has been shuttled back and forth between grandparents and has done very well all things considered. They have this great playground on the roof of Motts and we took Coop up there the other day here are a few photos.

Colby Drew

2009-04-27T14:31:00.001-04:00

Pics of our little man from last night.

ICU...C...U..Later

2009-04-27T13:23:00.000-04:00

Colby loving life in his baby hospital gown! Hey look ma, no tubes! Except for the feeding one! :)

Colby sleeping before they removed his oxygen tube.

Colby's new bed space

The small room, you can see our neighbor's space too. We had to call the cops on them twice, once for a loud party and the other time because they wouldn't stay off our lawn.

Our space, you can see the couch we sleep on in the lower left.

That's right , we said C U Later to the ICU. Like I said before it was bitter sweet in numerous ways. Obvioulsy its great for Colby, its a big step. But its also nerve racking for the families. The care situation is night and day from the ICU. We haven't spent the night here since the Tuesday after surgery. But I stayed here last night, Jess will be staying here the rest of the week. You pretty much have to as you feel like the first line of defense if anything were to go wrong. The nurse has only two hands and can only be in one place at a time, so if Colby throws up, which he has been doing often, then we need to be there to help him and let the nurse know we need help. General care really, really gets you back to reality and prepares you for the road to going back home. I think any parent can attest to the fact that bringing a newborn home is scary enough, now adding this to the mix makes for even a more interesting transition. We're still about a week, give or take a day or two, from bringing the Big Cheese home. I'm terrified, you have all these issues to watch out for normally, and now we have a few more to throw in the mix. But hey it is what it is and we'll figure it out and in no time Colby should be crawling around like nothing ever happened.

The other strange feeling leaving the ICU was moving forward in this process while leaving some of the other families behind that we've forged a small bond with. Although they are just 500 ft away, it does seem like miles. I will say though that there is not a sense of guilt. Like I said in a previous post, there are congrats and well wishes from those same families and we just pray that they'll be joining us here soon. It is wild though, most of the people down here we know, so alot of us are still together. That is comforting in itself.

Colby is doing great, as Dr. Hirsch said this morning, heartwise, he's fabulous. His main issue is keeping his feeds down. He's throwing up after every feed, but the nurse practioner thinks it's because he still has some build up in his lungs from intubation. So the nurses are working to loosen that up and get it out of him and it'll be a process, but hopefully one that ends soon. He still has two small chest tubes and one may be out tomorrow. So he's getting more and more fiesty, crying and showing us he's bummed out, all good signs he wants outta here.

Our room is tiny and we share it with another family who's son just had his final surgery to repair his heart. Its definitely more private in here then in the ICU, but it's a give and take both ways, like I said before, it's bitter sweet.

The Waiting Game

2009-04-25T23:24:00.000-04:00

Hey all! Well we're currently playing the waiting game. Colby is still doing awesome. He is wowing the nurses and doctors with how quickly he is coming around. He currently is doing so well he has his orders to go to the floor, the general care floor! :) Whohoo! But there are no available beds right now. So he remains in the ICU. His only issues right now are he still is draining chylous and he's also not enjoying the formula they have to give to him because of the chylous, so he's been spitting up some. We think his stomach may be a bit upset too. He has these spurts where he cries and its so sad. Its this muted little cry and although it breaks your heart to hear it, its also a great sign that he's on his way to recovery. They tried to have him start taking feeds out of a bottle, he took down about 5 CCs but he fussed alot and doesn't seem ready for that step up just yet. He does suck on a pacifier like crazy so he's got to be on his way.

Jess and I heard talking in the ICU last night of a heart transplant happening. Our nurse told us they were going to be doing a surgery late last night and we are assuming it was a transplant. We believe the child is across the hall from us as there is a huge machine in the room that we've never seen anywhere in the ICU since we've been here. This place is just amazing as to what goes on here. There are some big time miracles going on here on a daily basis.

We had a nice little distraction today, we popped on the NFL draft and watched a bit of that as our beloved Lions take another stab at a banner year, at least it can't get any worse than last year, or can it?!

I can't believe I left you all hanging about the Oreo Dream Bars, Earth Day style. They were fantastic and looked just like a big chunk of dirt. The perfect earth day treat, who knew dirt could taste so good.

Hopefully tomorow I'll have some new pics for you and be able to tell you all about our big move!!

Blog to ya later!

Colby's Rockin Out!

2009-04-24T23:57:00.000-04:00

Hey everyone, Colby is rockin and rollin! He's doing really well. Thursday night he had to get another small chest tube to help remove more fluid from around his lungs. He's about to be taken off oxygen and were getting closer to moving to general care. He did have one little setback with his feedings. He began draining chylous which is a milky substance full of fats. He now has to be taken off milk and put on a special formula. He will be on this until he stops the chylous. It was a late night again so I promise to post more tomorrow Jess and I plan to go to rounds tomorrow morn.
Scott and Jess

Holding Colby

2009-04-24T09:19:00.000-04:00

This is the craziness that goes on just to hold Colby.

Colby's Getting Better

2009-04-23T23:41:00.000-04:00

This pic was from the 23rd, sans breathing tube, look how less puffy he looks then the pic below, yes that's the same baby! He has to be so much more peaceful now. In this pic he really looks like Cooper. First time we could ever see that.

A little puffy here, expected and normal after surgery.

Coop checking out his new buddy!

Cooper and Colby hanging out at last.

Hey all! Sorry for the delay in posts again, it was tough to find a free few minutes today. Colby is doing really well, his strength, will and toughness are unmeasurable in my book. Yesterday they removed his breathing tube, took him off blood pressure meds, removed his main chest tube and took off his dressing. He is currently on only a few meds, and receiving hi-flow oxygen. They did have to put a small chest tube in his side to help drain more fluids. He was really puffy yesterday and by today he looked like a whole new baby. After surgery he got up to about 9 pounds, currently he sits at 7.4 pounds. That's alot of fluid he lost! If you ask me Colby's got a weight loss plan that would put Jenny Craig to shame. Somebody call up Oprah, Dr. Phil and Tyra! :)

They started him back on actual feeds today. This kid isn't messing around. They are running the milk through the tube in his nose that goes down into his stomach. We are really hoping that they begin to get him on bottle feeds really soon. He is sucking on a passifier really well so the nurse feels like he's about ready to start on bottles. Nursing him will not be an option for a while as he builds back all his strength. I'm hoping that Colby can get on a bottle soon for his sake and ours! Jess and I will have to learn how to tube feed Colby if he can't bottle and obviously I'll do anything for my son but I don't remember reading this chapter in What to Expect When You're Expecting. We would have to take the tube and put it through his nose down to his tummy. I prefer to leave the quasi-medical stuff to the docs and nurses, I am not looking forward to that at all. I went to Art School people, not Medical School, I just drove by there on my way to class.
Anyways if it comes to that they'll give us alot of instruction on it so it shouldn't be too bad, I hope.

Colby is getting closer to getting out of the ICU could be anyday now. Once he is out of the ICU he goes into the general care floor. Its a great day but it also has a touch of being bitter-sweet. The only concern you have as the parent is your child goes from 24 hour, one-on-one care to 24 hour, one-on-four care. The nurse in general has four patients vs. one patient per nurse in ICU. So obviously you're thrilled that your child is progressing enough to get out its just a scary thing to think that someone isn't sitting there watching his every move. It will be fine but just nerve-racking.

One of the things that I will remember most about this journey is talking to the other families. There are 15 beds in PCTU and I've met numerous people who are in some unbelieveable situations. The ups and downs that people go through in the PCTU are joyous and brutal. Your child getting extubated gets you congrats all over, a setback gets a sincere show of concern and support. But there is a bond here between the families, I feel it. We can talk with each other and know very well what each other is going through. There is a family here from Kansas City and I've spoken to the dad a number of times and we both have the same concerns and issues, from the fear of tube feeding to setbacks, to how we felt when we found out about our childs condition. You can tell alot about a person by how they handle themselves in stressful situations, well in that case these families are inspirational. They're tough, caring and sincere, eager to talk, share their stories and remember your name, along with all the other stuff they are dealing with.

Jess is still doing great, she is feeling better and better each day. Getting more and more excited for Colby to be on his way to coming home.

Scott

Pics of the Cheese!

2009-04-22T09:39:00.000-04:00

Here is a shot of the little man, the white patch on his chest is his dressing, which will be removed today. His incision was only about 3 inches, so its not as long as the patch. He also looks a bit puffy but that's totally normal.

The Colbster looking darn good after open heart surgery, most of us don't look this good after waking up in the morning! :)

Sleeping the day away.

A UofM Motts bear wearing Colby's Hope Beads and Survival Flight wings.

A pic of Survival Flight nurse Polly and the fam.

Big Day for the Big Cheese!

2009-04-22T08:25:00.000-04:00

Hi All, Well its a big day for the "Big Cheese"! Colby is doing great. Jess and I sat in on rounds this morning and it looks like Colby will have his chest tube taken out (that was for draining fluids) and he will be extubated today also. So no more breathing tube! Over the night Colby has been doing his best Usain Bolt impression. They put him on "sprints" overnite. This is essentially where they have Colby breathe on his own for about an hour. He is still intubated but he is doing all the work and the ventilator is there to help him if he needs it. He ran a sprint around 9:30 p.m. and another late last night and received the olympic gold medal for both. Who knew Colby would already be an athlete at 7 days old. So they will do another sprint this afternoon and as long as he looks good from that, his respiratory numbers look good and his blood gas numbers look good they'll extubate him. So that is a big step. He still is holding a good amount of fluid around his lung area so they "tap" him today where they'll just remove that extra fluid with a needle. He'll also get his catheder out today too. So he'll be making some nice progress. He has been peeking his eyes open every once in while too but he's still pretty out of it. They have to continue to give him Morphine so he doesn't get too aggrevated and for pain control.

They do another really cool thing here called Hope Beads. Every child here gets a piece of colored twine with a dog tag that has their name painted on it and then the kids get beads for every procedure or event that they go through. They use the beads to document and honor the journey of each child and to tell their personal story. Every display of courage is acknowledged by a different color bead. Colby has about 20 beads right now. His beads are for: Life, Favorite Nurse, Breathing Treatment/Oxygen, PCTU (Pediatric CardioThoracic Unit), IV, Oral Med, Special People, NG Tube, Pokes, Radiology, Good Day, Hospital Admission, NPO, Chest Tube, Survival Flight, EKG, ECH, Heart Cath, Surgery, Pre-op screen, Urinary Cath, Dressing Change, Intubation, Blood Draw/Transfusion. It'll be something he can show his friends in the future and one more piece of this giant story that he'll someday get to tell.

Jess has been doing great, she's in great shape and loving her free meals that she gets here as she is a nursing mom. Today is a special day, they have Oreo Dream Bars for dessert in honor of Earth Day. Why you ask do they have Oreo bars in honor of Earth Day? That question may never be answered. My only thought is the Oreo bar looks like a chunk of dirt. :) The most ironic part of this little tidbit, for the promotion of the Oreo bar they have passed out paper flyers for the dream bar with the meals for the past 3 days. Something just doesn't seem right there! :)
But this has been one of our talking points lately, The dream bars are coming, the dream bars are coming, whoohoo! :) We'll let you know the full review on our Earth Day treats.

Point of interest, there is a teenager in the waiting room listening to his headphones so loud that we could here them across the hall!! I mean SO loud. Jess even said something to him about the fact that he MAY be hurting his eardrums to which he replied huh? oh, I'm fine and then I think turned them up louder. :)

Doing Great!

2009-04-21T08:28:00.000-04:00

Hi All, Jess and I are about to head over to go see Colby this morning. He was looking great last night. He still has all the same stuff that he had before surgery. He was sedated and intubated. He was on a few more meds than before surgery but still minimal for eveything he has gone through. He currently has a chest tube that helps to drain fluids and a fully catheter. He also has some pacemaker wires on his chest that are there in case he starts to have an abnormal rhythm they can attach a pacemaker to the wires and control the rhythm themselves. That is all non-invasive, the wires were attached in the OR. He also has some different monitoring devices that watch very closely his blood sugar levels and insulin intake. Can't remember if I mentioned this before but Colby is taking part in a study of children and babies to see if their blood sugar levels are controlled within a tight window if it helps them to heal faster and get out of the ICU quicker. This is the case already for adults. The study involves monitoring his insulin and giving him insulin to keep his blood sugar levels at a certain level. So he has some different monitoring devices for that too. I can't say enough how good he looks, he is such a strong little baby. We're thrilled.

They gave us a pager incase they need to get ahold of us at any time as the cellphones in the icu are goofy. They work well where you're not supposed to answer and don't work well where you can. But hey do have our cell numbers and hotel room #.

When Jess and I were there last night, Polly, his survival flight nurse stopped by to see him. I hadn't seen her since they brought him over and Jess never got to meet her officially. So that was great, she gave us big hugs and we chatted for a few. They told us whenever we would like we can bring Colby back to Ann Arbor to see the survial flight helicopter and take some pictures with it, etc. So that was really cool. Also it was the last night for our ICU nurse Tiffany. She has some well deserved time-off. She has taken care of Colby every night he has been her since arrival. The nurses here really form bonds with their patients. Maybe some don't but the nurses that have been dealing with, Colby really have. Tiffany said she'll be calling the icu everyonce in a while to make sure he's doing well.

Anyways we're gonna go see the little man and get some breakfast so I'll let everyone know how he's doing a little later!! Again, thank you all for everything!

Scott and Jess

P.S.: Cooper has been a trooper through all this, he has been here playing, running around etc. He has been bouncing back and forth between our parents. He now says "Baaabyyyy" when he sees a baby so maybe its sinking in a little bit. He was shown some pics of Colby on the camera and gave him kisses on the camera. Too cute.

Vanilla

2009-04-20T17:18:00.000-04:00

Well its over!!! Colby's surgery is done. we just spoke to Dr. Hirsch and she said his surgery was "Vanilla" as it could be. A textbook artrial switch. She switched the aorta and pulmonary and two small coronary arteries and then repaired his valve that they had previously opened up when they did the first procedure last Thursday. He has a closed chest and he's on minimal medication. So he is doing great. We get to go back and see him in an hour. The next 24 hours are the most important and we'll be staying at the hotel here in the hospital. Thanks again to everyone for all your prayers today, it really helped!! I'll give you an update of how he looks after we get back to see him.

Some pics from before surgery, this morning.

2009-04-20T15:51:00.001-04:00

All the kids in the ICU get their names put up in big, colorful letters. Now that we finally named our little guy they were able to do up his name banner.

Getting Close

2009-04-20T15:38:00.000-04:00

Well its 3:40, at about 3:15 they came to tell us the procedure was done and that Colby is still on the bypass machine, they're just waiting to taking him off that, we should here soon if he's off that. Once Dr. Hirsch comes up to talk to us we'll know everything is done.

Oh they just came to tell us that he is off the bypass machine and doing things on his own. They're about to close his chest up. He'll be out of the OR in about 45 mins and Dr. Hirsch will be up to talk to us. So far, so good!! It's almost over.

Surgery Day

2009-04-20T14:07:00.000-04:00

Hi All, Its about 2 p.m. Colby went in for surgery at 12:15. They say it'll take about 4 hours and that they'll update us, no updates yet. We just got some lunch and got back up to the waiting room. Everyone was thrilled that we FINALLY picked a name. Dr. Hirsch came by yesterday while we were out and said they better have a name by the time we do surgery. She said she didn't want to do the surgery without the baby having a name. So when she came up this morning she gave us "the look" and said do we have a name, I said yup and she put her hands in the air with a big YES! It was funny. I was able to hold Colby for almost an hour today it was great. When I first held him he opened his eyes up and was looking all around. The saddest part is when he starts to struggle. He gets pretty worked up, it has to due with the medicine he's on and his breathing tube. So after a while they gave him some morphine and ativan to calm him down. Then Jess got to hold him again also.

We just got an update as I'm typing this. Colby is currently on a bypass machine and they have started the actual procedure. He is doing fine as of now.

Say "Cheese"

2009-04-19T23:28:00.000-04:00

Well without further ado Jessica and I would like to present our new little baby as....

COLBY DREW HILLING

Yes after hours of deliberation, ten minutes here, an hour there and a long "name" meeting at our local Panera, we decided on the name Colby. I use "decided" loosely, as Jess's story is she gave into me as I was pleading for Colby. The list came down to Chase, Campbell and Colby. Others possibilities were Carson, Cody, Connor, Camden and Cameron. We did consider Jack as the middle name but just couldn't do it to the little peanut. Yup, my son is now named after a kind of cheese but hey, everyone loves cheese right? At one point Jess asked if I knew of any famous Colbys, the only one I could think of was the dude who won Survivor a number of yrs back. I think Colby is a good, strong, manly name and this little peanut needs it. This means the name "NotYet" is history but I think Little Peanut will stick around for a while.

Its going to take a while to get used to calling him by his name as we've had so little one-on-one time with Colby, we feel like we barely know him yet. But that did change a bit today as Jessica was able to hold Colby! They told us on Sat. we would be able to hold him before the surgery on Monday so we were geared up for that. But when we got to hospital today the nurse said that seeing as Colby was calm and having a good day and the ICU was quite we could hold him today. It was very exciting and kinda scary too. So it took about 3 nurses and 1 respiratory therapist to get this done. Our main nurse picked up Colby while another moved away the bed, another held all his IVs and another held all his breathing tubes. Then we slid the rocking chair where the bed was and Jess snuck in under all the tubes, plopped in the chair and the nurse handed Colby to her. After situating his tubes they kinda left us alone and Jess got to hold him for around an hour and 20 minutes. It was really great. I'll hold him tomorrow before surgery.

Our game plan tomorrow is to get to the hospital around 6:30am, just in time to get into the room for rounds. Colby has the option to become part of a research study on the affect of insulin and blood sugar levels on healing in babies who've had heart surgery. We are considering it and have to meet with one of the Docs running the study tomorrow morn. Supposedly one of the nurses in the ICU has a daughter who had the same surgery 18 yrs ago, she is doing fine now. We hope to get to speak to her about it and her experiences. Colby is the 2nd surgery for tomorrow so he'll go in anywhere from 11 a.m. to 12 p.m. They've been getting us prepared for how he'll look after surgery. We've been told it'll be tough and that we won't fully understand until we see him tomorrow, but ready or not, we'll be there for him.

I'll be updating the blog as much as I can tomorrow, stay tuned.

The New Family Portrait

2009-04-18T22:41:00.001-04:00

This won't end up on the wall at an Olan Mills photo studio but it'll have to do. This is a pic of the four of us, the future goal around here is to get one minus all this crazy machinery and tubes and medicine.

Chillin!

2009-04-18T17:16:00.000-04:00

These photos are from Friday so this is LP's "Chillin" time, remember thats the doctors word! :)

This was Coop's first interaction with Little Bro! He did his best "E.T" and touched his little bro's foot. He also tried to trade his "Doggie" (the blue one) for his little bro's new black lab,

nice try Coop!

and Sleeping...

Still Sleepin...

More sleep!

NotYet sleeping the day away, he's a pudgy baby!

PIcs from the first night at Motts

2009-04-18T16:18:00.000-04:00

These are some pics from when I first got to Motts.

With all the craziness of the first night, LP still caught some ZZZZZZZZZZZZs

The entire staff here is incredible.

Checking out NotYet.

All hooked up at Motts

Pics of Survival Flight prep

2009-04-18T16:04:00.000-04:00

See you at U of M - "NotYet".

Goin in...

About to put Little Peanut in the SF Bubble/Incubator thing-a-majig

And working....

Survival Flight crew working on Little Peanut.

A picture is worth a thousand words! The Birth

2009-04-18T13:40:00.000-04:00

The following pics are not in order as I can't figure out how to scoot them around but you'll get the picture, no pun intended! These photos are from the birth and what went on directly after at Providence. More to come!

All this for one little guy?!?

Mom and Dad getting to touch the baby.

All hooked up.

Little Peanut's/"NotYet"'s first official glamour shot, sans 18million tubes.

On the way to the OR!

Update 4-18-Noon

2009-04-18T12:20:00.000-04:00

Hi All,
Sorry for the long delay in posts, but everything is going really well. First of all the baby's name will be decided very soon, so hang in there with us on that front. Little Peanut as he is now reffered to by a couple of nurses, is doing great. He's now taking in breastmilk via a tube that goes through his nose down into his stomach. He seems to like the good stuff. They had to supplement him with some formula and he threw that up, so he definitely wants the good stuff. He takes it right down. His stats are right where they want them, he looks good and even started opening his eyes yesterday and looking around. Jessica got released yesterday and made it up to get her first real good look at the peanut. He opened his eyes right up when she started talking to him and he stared at her for a number of minutes. The sad thing is when he cries you can't hear him due to the tube he is intubated with. So you see this sad face crying away with no sound. Poor guy. Jess is doing well, a bit sore, but well.

I was here for rounds yesterday morning which is an interesting scene. About 10-12 people surround the bed and just get crazy with medical info. There's Attendings, Fellows, Residents, Nutrionists, Respiratory, etc. There's all these numbers and terminology flying around, its impressive.

We spent our first night back at home yesterday since Monday night. It was nice to sleep in your own bed but it was weird to be away from the peanut. Even though he is doing fine you feel like you need to be there. But we have to remember that we need to be good to go for Monday's surgery day and we have to make sure Cooper is doing great too. I finally saw him yesterday morning for the first time which was great, he went to visit Jess in the hospital on Thursday.
Thanks so much to both our families for helping to take care of Coop during these crazy days.
Coop was able to come up and see his little bro for the first time. Coop was able to touch his foot and offered his little bro his "Doggie". Although I think the only reason he did that was to try to steal one of his little bro's new toys sitting at the end of his bed. The hospital occasionally brings little gifts to each child in here. Peanut has received a black lab stuffed dog, an elmo book and the coolest thing, a stuffed Survival Flight helicopter and his own pair of SF wings, brought to him by the SF nurse, Polly. Its too cool!

Jess and I will be trying to get a room at the hospital hotel for Monday and Tuesday, Monday being surgery day. Just so were close by for the big day. We are really confident that everything is going to be just fine and we'll have a healthy peanut in no time. I consider us very lucky as I've met some parents here who are just in so, so much worse situations, its so sad. I'll continue to say this, thanks to all of you for your well wishes, prayers, offerings to help us out, etc, it has truly, truly helped!

Update 2

2009-04-16T16:36:00.000-04:00

Hi all, its about 4:30. Baby had his procedure this morning an Atrial Septostomy and it was successful, he's doing great right now. His oxygen level in his blood is up and he's just "Chillin" that's a clinical term you know! The cardio surgeon said the little man will be "Chillin" for the next couple days. He had a fever after the procedure but they got that taken care of.

We got some great news from our cardio surgeon today. She'll be performing little man's open heart surgery. It will be this Monday around noon. She descibed the whole procedure. She really knows her stuff and is very confident. She said his heart has all the right parts and we just need to switch around a couple pieces. The surgery has a 95% success rate. The one main issue is two tiny arteries need to be moved along with the main big arteries. Those little ones can get kinked. If they do they would have to go back in and touch it up a bit to un kink them. Little man will have a scar on his chest and he'll have a chest tube when he comes out of surgery. They'll keep him in the icu for 5-7 days. He'll be in the hospital for about 2-3 weeks after the surgery. Our cardio surgeon said he will not have to take cardio medicine for the rest of his life. He will have to visit a cardiologist though at least once a year for the rest of his life. I asked if he can still be active and play sports and she said yes he can. Some docs don't want the arterial switch patients to play contact sports (football and hockey) but its a case by case basis. So that was a great thing to hear. I didn't want him to be left out of a major part of a kids life, being active. She said he should live a perfectly healthy life. She told a story of an arterial switch patient who went to one of UofM's congential heart defect patient picnics and went up to a doc who did his surgery 20 yrs ago to say thanks. The kid is now the captain of his football team and is 6-7. So its nice to hear those success stories, it gives much hope. So thank you, thank you, thank you to all of you who have been sending well wishes, praying, reading the blog, its working! He's doing really well and I know were not out of the woods yet but its looking up and I thank you all for thinking of us during this crazy time.

Update

2009-04-16T08:24:00.000-04:00

Quick update before I try to catch some zzzz's Its 8:30 am and "NotYet" (that's the baby's name as the staff keeps asking does he have a name and I say "NotYet") is in for his procedure to open up the small hole that every baby has in their heart. It'll take about an hour and a half and if all goes well as it should he'll be stabilized until he has his surgery. I sat with him a good part of the night, he's just laying there with all these tubes and stuff like its no big deal, if he only knew! :) He's in fantastic care here, these people care so much, I'm blown away. Jess is doing well, shes on her way to recovery.

Baby's Here! And He's A Trouble Maker!

2009-04-16T03:14:00.000-04:00

Hi All, Well as I start this post its 3:15 am and I am in the waiting room at The University of Michigan-Motts Children Hospital, Pediatric Intensive Care Unit. I'll get to why in a moment. At 5:53 pm Jess delivered via c-section a 7 pound, 7 ounce, bouncing baby boy! When they pulled him out he was crying and everything seemed okay but he was rather pale, so much so I noticed it. Well they cleaned him up and took some photos for us and then the nurses wanted to take him away to the special care unit (spu). The nurses mentioned that they wanted to check out some things as he was quite pale. They had me come with. It was rather weird obviously something was up I just had no idea what. They got him down to the spu and started doing all this stuff. Giving gases to the baby, starting IVs, etc., it was scary. They really weren't telling me too much other than they thought it was a respiratory issue or a cardiac issue. I was initially hoping respiratory. I'm not sure how bad respiratory can get, but a heart issue is scary. So they started running xrays on the little guy and telling me they had a cardiac specialist on the way. At this point, I was starting to freak. Poor Jess doesn't know whats going on, our families don't, no one. So Jess was out of surgery at this point and recovering in 329. I went down to fill her in on the little I did know, pretty much nothing. Well the xray came back clean, meaning no respiratory issues. That's when I was starting to worry. The cardiac specialist showed up and started doing an echocardiogram on our strong little dude. He did it for about 20 minutes, and at one point said to me where do you want to go, UofM or Childrens Hospital. Ahhhh, for what? So he proceded to tell me that our little baby has Transposition, where the aorta and pulmonary arteries are reversed. A good site to check out what this is all about is here: http://www.americanheart.org/presenter.jhtml?identifier=11074

There are some benefits of being a baby, he has a small hole and a small artery which are doing the work of what the aorta and pulmonary arteries should be doing. The first procedure that needed to be done was to make the small hole bigger so it could do the work it was already doing more efficiently. That was where the rushing started and why the cardiac specialist asked UofM or Childrens, we need to know right now. Being the UofM grad in the family, I thought well there's no choice here! Jess and I decided UofM at which then it was decided that our strong little fighter would get a Survival Flight. Yup he got a sweet helicopter ride on the UofM Survival Flight. You should see this team when they role in. They come in like its Top Gun! Chests out, in their maize and blue, air force pilot like, survival suits. The just command so much attention. They had an entourage of the 4 member team, security guards, paramedics etc. They just jump right in and take over. Directing the Providence nursing staff, telling us whats going on, putting up with pictures etc. They got the little guy all set up for flight. When they came in he wasn't doing so well, but when they finished stabilizing him he was in great shape. So good that they figured they might be able to put off doing the procedure of opening the small hole bigger until 7am this morning. So once this procedure is done today, little man will completely stabilize, then comes the big daddy, open heart surgery to repair the transposed arteries. That will occur within the next ten days. They will do a surgery to essentially flip the arteries around. The success rate is about 95-98 percent on these surgeries. It will take about 5 hours to do the surgery. One of the surgeons from the cardiac team here at UofM just got done telling me he thinks everything will work out great. Our strong little guy is currently in great shape, his oxygen levels are up his blood is 100% saturated and he's got a great blood pressure etc. So although this has been the absolute craziest, scariest, emotional day of my life and I think I can safely say Jessica's, I think, pray and hope its all going to work out. So if you can please say some prayers for our little man, he can definitely use them and yes he still has no name yet! :)

Jess will be fine, she had surgery so you can imagine that that, ontop of all this news was rough, but she held it together 1 Million times better than I. She is a tropper and deserves all the credit in the world. She got to see our little man but missed out on all the craziness of the Survival Flight team. I took many pics and videos of these guys working their magic. I must say it was surreal doing so, I felt weird taking photos of my son getting all this work done to him, but we had to document it. The whole team was joking that he just used up all of his teenage misbehaving points, I said that's right and for the cost of this high tech helicopter ride he isn't getting a car until he's 30, I'll definitely be pulling all these photos and videos out when the time is right and saying see what you did to us, you better behave. It was a nice bit of humor at a crazy time.

Of course I forgot to bring my upload cord but I will hopefully be able to post pics tomorrow.
Jess is at providence and probably will be for a few days, I'm at U of M right now and we'll be here a good part of the time, I'm going home tomorrow to get some sleep, but will be back out here I'm sure tomorrow.

One more thing before I end this crazy long post. I can't say enough about the staff at St.Johns Providence, Uof M Survival Flight and the nurses and doctors here at U of M. They are incredible! Through all this craziness not only did they go above and beyond the call of their duties medically, they kept us informed, filled us in, answered all our questions, rubbed our backs, etc. I'm truly grateful for each and everyone of them and will never forget all they did to help our little guy.

Round 3-The C-section

2009-04-15T17:35:00.001-04:00

Jess is getting taken in for a c-section, its 5:30. I'm just waiting for the call to go down to the OR. Wish us luck!!

Scott in 329, Jess in OR

And Continues....

2009-04-15T14:56:00.000-04:00

Still pretty much the same round here. Jess is starting to have a few more contractions and the baby is occasionally not digging them to much. But they're still plugging along and baby and mom are doing great.

It pains me to say I just beat a pregnant Jessica in Gin Rummy, she would gloat if the tables were turned so I have to get my gloats in to even if she is in labor. :) She did put up a good fight though.

Our new nurse is the one that did our birthing class a couple yrs back, so its kinda like we have a celebrity nurse, so its pretty cool. Everyone in class was like are YOU gonna be our nurse when we come in to give birth? She kept saying probably not as there are so many nurses here. Our former classmates would be soooo jealous! :)

Food Update-Lunch:
Jessica: More Ice Chips
Scott TACO BELL-Whoohoo!
Baby: Yucky Pitosin

TV Update:
Tiger Game

Magazine Update:
Nada

Scott and Jess, bored in 329 (Jessica's words, not mine) :)

Round 2 continues! This is gonna be one long round!

2009-04-15T12:17:00.000-04:00

No new news yet, Jess is moving along ever so slowly, but baby and mom are doing fine.
Breakfast today:
Jessica: Ice chips
Scott: Cheerios (honey nut), Fruit Parfait, Coffee
Baby: Pitosin

TV Shows watchedtoday: Today Show, Ellen, The View. Somebody help us! :)

Magazines read: People-April 20th edition

Were now playing cards. Gin anyone?!?

Scott and Jess, playing cards in 329

:)

The Baby vs. Pitosin-Round 2

2009-04-15T10:15:00.000-04:00

Well were trying this one more time. The baby is in fantastic shape so, they're giving Jess a slow drip of Pitosin to see if the baby will react in a positive way to a slower drip. If the baby does then we're probably looking at a whole day of labor and delivery tonight or tomorrow. If they notice any signs that baby is not up for the pitosin battle then its gonna have to be the c-section route, no questions asked.

Scott and Jess, watching ELLEN in 329

The Baby vs. Pitosin

2009-04-15T08:31:00.001-04:00

Hi All, After a good nights sleep, they put Jess back on Pitosin this morning, and the baby's heart rate dipped again as it did yesterday, so they stopped it again. This baby just does not enjoy Pitosin. So its looking more and more like it might be a c-section. But we don't know for sure yet. Doc Joshi is finishing up a c-section right now and will be in to talk to us in a while to see what course of action to take. So we're holding out hope that Jess can still try but its a wait and see thing right now. There are also alot of other babies that want to be tax day babies too as there are a bunch of c-sections scheduled today. If that's the course of action it means more waiting. Poor Jessica can't eat either in case its c-section, she's starving.

Scott and Jess, waking up in 329

:)

Tax Day-BABY!

2009-04-14T17:52:00.001-04:00

Well its almost 6pm and still no baby. Jess was starting to progress but the baby began to not dig the Pitosin thing, so they lowered the dose which the baby was very happy about! Then they decded to take her off Pitosin altogether for today. They will let her try to eat, relax and start Pitosin again in the morning. Doc Newman says the baby will be here by tomorrow evening. Jess is resting right now and still having contractions but hopefully she'll be able to get a good nights sleep. She's doing a fantastic job right now. So its looking more and more like we may have a tax day baby, our little future IRS Agent.

I know my boundaries so I'm not allowed to post any pics of Jess, and I had to post at least one pic so you get a pic of me blogging.

Scott and Jess, Live from 329

Slowly but Surely

2009-04-14T14:47:00.000-04:00

Hey all, Its about 3:00pm. Jess is a trooper! She is hanging in there and making some progress, contractions are beginning to come a tad bit stronger, but she is managing great. She's just focusing, concentrating and also resting. She had us watch numerous Baby Story episodes so were more than ready to see our little one after watching numerous others deliver. :)

Scott and Jess, live from 329

TLCs The Baby Story

2009-04-14T13:01:00.000-04:00

Its 1pm and were still waiting. The TV update is quite an ironic one. Were watching the Baby Story on TLC as were sitting in the hospital waiting to have a baby. Its weird shes watching what is going to be happening to her in hours. If that were me I couldn't handle watching a procedure I'll be going through very soon.

Its soooo busy here today there are nine other babies ready to pop out into the world. We read the other day that Tuesday in general is the day of the week that has the most babies delivered. Weekends has the least babies delivered. Obviously this has to do with the doctors and their schedules being that many more births are scheduled these days.

Contractions are getting closer, but Jess isn't feeling anything much yet. No food for Jess either, but the nurse did sneak her some graham crackers and I was in charge of hiding the evidence so Doc Newman didn't see it. My stealthy, cat like reflexes kicked in and I made the wrapper disappear. Yes this is my life right now, excited about hiding a graham cracker wrapper. Time is definitely dragging. :)

The image with the graph is the baby's heart rate (Top Graph) and Jess's contraction's (Bottom Graph). The other image is the baby's heart rate.

Scott and Jess, Live from the 329

Twitter Baby

2009-04-14T10:53:00.000-04:00

Not too much new going on still waiting. Giving birth in the age of technology is quite weird. We have a flat screen tv, I'm updating a blog and texting on my phone and oh yeah minor detail...WAITING FOR A BABY. I can't imagine what the nurses think when they see parents come in and were busy typing on laptops and phones while they're drawing blood and hooking IVs. Jess is texting, I'm on computer its just weird. Now if I was sending Tweets thru my Twitter-account, all would be right with the world

Jess is napping on and off and her contractions are 3 1/2 minutes apart consistently now. She still isn't feeling anything yet. She's really hungry but hanging in there. The nurse is going to see if she can eat something, whoohoo! OH GREAT, THE VIEW IS ON! I consider myself so lucky today, I have a baby coming and I've been able to see Regis, Kelly, Kathy Lee Gifford and now Joy, Whoopi, and Elizabeth. This day is complete! :)

Scott and Jess, Live from the 329

You say Pitocin, I say Patocin

2009-04-14T09:30:00.000-04:00

Well its around 9:30 am, we've been here about 3 hours. Jess is doing great. They did the obiligatory medical questions, blood work etc. and then started her on Pitocin about 45 mins ago. She is just starting to progress ever so slightly. she's not feeling any pain or anything yet. Jess is hungry and to fufill her hungry belly she gets to chomp on ice chips, yummmm. I on the other hand got to sample some fantastic morsels from the hospital cafeteria. McDonalds its not, but this hospital makes one hell of a fake egg mcmuffin! Anyways I better get going Regis and Kelly have on Kathy Lee Gifford, I can't miss this.

Scott and Jess, live from Room 329

:)

Coming Soon!

2009-03-13T00:54:00.000-04:00

Here are the pics from our most recent ultrasound. We were really lucky, due to the positioning of the baby, to get some shots of the baby's face. That's what most of the pics are of. There are a couple profile shots and pic of the big foot too. Mom and the baby are doing great. Click on the images for larger versions.

Cooper Van Gogh

2009-03-13T00:06:00.000-04:00

Well it looks like we have a little artist on our hands, Coop is all about coloring, playdoh and drawing. He does it every night. He pulls out all his crayons, markers and playdoh and just goes to town. Jess taught Coop to color the eyes of the dinosaurs in his coloring book so every page he now colors the eyes first.

Goodbye mullet!

2009-03-12T23:38:00.000-04:00

Its our "COOL DUDE"'s first haircut. The mullet is gone and he now looks like a real little boy! Coop just sat there as if he'd already had a million haircuts. Unaffected by scissors, razors and combs, Coop sat there like a grizzled haircut veteran, no smiles, no frowns, just straight to business!

Coop visits Elmo's World

2009-03-12T22:22:00.000-04:00

Jess, Coop and I went to see Elmo at the FOX theatre. Coop was mezmorized by all the colors, lights ans sound. He was totally into the whole experience. Once the second half of the show started he had about enough Sesame Street. So did we! :) Also a big high five and THANKS to the city of Detroit for my Tickle Me Elmo Parking Ticket. :)

Being Daddy

2009-03-12T22:11:00.000-04:00

Its Coop and "Doggy" doing their best daddy dress up.

Let it snow, let it snow, let it snow

2009-03-12T21:57:00.000-04:00

This is Coop's first time out in the snow, he had fun

and didn't wanna come inside. This was late January.

The Model Years

2009-03-12T21:08:00.000-04:00

Check out Coop with his long hair and hipster scarf,

he's doing his best stair poses that he learned in model class.

Leaves

2008-11-02T23:37:00.001-05:00

I finally put Coop to work for the first time in his young life, raking leaves. I introduced him to the joys of manual labor and started him on his path to many of years of helping Pops out, but all we ended up doing was being silly and having fun!

Finding Coop, again!

2008-11-02T23:23:00.000-05:00

Getting ready for some candy! Too bad I can't eat any yet!

Finding Cooper (Nemo)

2008-11-02T22:33:00.000-05:00

Coop's Pumpkin.

Jessica's Pumpkin.

Hey John McCain the pumpkin, whats up!

My very first Trick-or-Treat!

Look at all the candy for mom and dad!

Isn't he cute!

Nemo and Doc Mommy at the 2nd Grade Halloween party.

That's one big sippy cup!

Scooping out the goop.

Happy Coop, ready to carve pumpkins.

Happy Halloween!

Guess What!!!

2008-09-09T21:51:00.001-04:00

That's right! Number two is on its way! This is an ultrasound from 10 weeks, 1 day. The baby is right on track! We're very excited!!! The babies heart rate is 176...What's that mean...!?!? :)

Cooper's First Year

2008-07-12T12:35:00.000-04:00

Cooper

2008-06-08T10:39:00.000-04:00

Harmonizing

2008-05-02T21:42:00.000-04:00

This will win me $10,000 on Funniest Home Videos!!!!

Peek a boo

2008-03-22T19:13:00.000-04:00

I put them down in the same order every time!

Easter and other things

2008-03-21T21:20:00.000-04:00

Cooper's 1st Easter

I'm an arteest.

Cubs and the Suxs

"I see you Easter Bunny!"

Easter!

2008-03-21T21:14:00.000-04:00

Musical Genius

2008-03-16T13:29:00.000-04:00

Strongest baby in the world!

2008-03-16T13:15:00.000-04:00

bath time

2008-03-16T13:13:00.000-04:00

Cooper in the Round

2008-02-24T18:04:00.000-05:00