Long time, no blog!

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!

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

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

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

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

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

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.