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.

Cruising along!

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

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

Pics of our little man from last night.

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

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

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!

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

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

Colby's Getting Better

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!

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!

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!

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

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.

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

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

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"

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

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!

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

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

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

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

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

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

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!

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

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....

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!

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

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

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!

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