This is the craziness that goes on just to hold Colby.
Friday, April 24, 2009
Thursday, April 23, 2009
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
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
Wednesday, April 22, 2009
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. :)
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. :)
Tuesday, April 21, 2009
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.
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.
Monday, April 20, 2009
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.
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