Home by Valentine's Day?

When we first came in on 11/4/08 for what was to be a 7-10 day hospital stay, we were confident that we'd be home for Thanksgiving. Things didn't go as planned and we hoped that we'd at least be home before Christmas. Three surgeries later, we were hoping to be home just after the New Year. Well, it's looking hopeful that we will be home FINALLY for Valentine's Day.

They are going to try larger more infrequent feeds with Lily soon as opposed to continuous feeds. Either way, Lily is now on NG tube feeding and she should be home fairly soon.

I can't wait until I can resume my 2.5 mile commute from the office to the house after work.

View from the Parking Garage

Another weekend at the hospital. The bad news is that Gwyneth was acting up in the tight confines of the Cleveland Clinic step-down unit but the good news is that Liliana continues to look good. She pulled out her core pack at 4 am Saturday morning so they put another one in along with an NG tube to give her meds. Later on, X-ray confirmed that her new core pack was in the correct place. I took a few pictures on the way home since there was a pretty neat sunset.

Snow, snow and more snow...

It's looking like another terrific winter for snow here in Cleveland. We were affected by the big winter blast that came across the country yesterday. Even with my 4WD vehicle, I had time getting up our driveway when I got home from work. I wanted to keep my car off the street which still hadn't been plowed.

Kim and I decided to change plans for visiting the Cinic at the last minute. She stayed there until the roads were cleared and I went home and cleared the driveway after work and then picked up Gwyneth from the sitter's. Good thing I did since Kim's van would have never made it very far to the deep and packed snow. See more photos here.

Out of the ICU

Today, Lily was transferred from the ICU to the step-down unit. The next goal will be to get her off her core pack and back on an NG tube. The core pack goes directly into her small intestine whereas the NG tube goes to the stomach. There are several reasons why we don't want Lily going home with a core pack. Hopefully, this means that Liliana will be home very, very soon and this long road of surgeries will be over.

Lily is off the Vent!

The staff at the PICU finally extabated Lily for the third time last night. It is the first time she is breathing without a ventilator for quite awhile. The last time she was intubated it was because of her respiratory distress that put her back in the ICU and on the road to a third surgery. Shortly after being extabated, Lily had a temperature that later subsided. Her cardiologist and everyone said she looks good but she still has a long road ahead. She has to be transitioned to other medications than the ones she is on now and her feeds have to slowly be increased.

In other news, Lily's grandfather underwent a heart catheterization and 3 blockages were found and treated. Her grandmother had a similiar procedure just about a month ago.

ICU Photos

I've just posted many photos that I've taken at the ICU over the past few weeks. See them on Flickr.

Pneumonia Again

Lily has tested positive for another bacterial infection in her lungs. She had been having fevers off and on but this is the first time a culture has come back positive. Now it will be at least 7-10 days on antibiotics before she can be extabated. All things considered, they say she looks pretty good otherwise. This is becoming like the movie Groundhog Day.

I worked from home today so I could let a repairman from the water department replace our water meter. In a fog when I left, I cut the corner a bit too close and got the little Yaris rental car stuck. I started digging the car out but it wouldn't budge. Luckily someone drove by and stopped and gave me a push. I really need my car back for this weather!

Baffling

Today Liliana's stats are back to normal. Yesterday, her heart rate was high and she was very irritable all day. Last night and today she has been fine and they have been able to wean down the vent. They are aiming for extabating her tomorrow if the weaning is successful. They will also do another echo on her tomorrow. We are hoping that Liliana was just having a bad day or they just got a bad echo on her. She was moving around quite a bit and they had to repeat it yesterday. It's also possible that other things can cause the leak to seem worse than it is.

Dr. Mummtaz said that Lily's behavior of tolerating the surgery and then having problems weeks later is baffling to them. That is not something you want to hear from a doctor. He also said that her heart function continues to be good and they still want to do everything they can before they even consider putting in a replacement valve.

Will This Ever End?

We got some bad news today. Lily's last echo now shows worsening leakage in her mitral valve. It has gone from mild to moderate but it is not in the severe category where it was before her surgery. Now we have to worry about that again as well as her not tolerating her feeds and the mold that may still be in her system. The cardiologist said that he doesn't want to go just by one echo before making a decision and there are other options. Lily could go home with a tracheotomy to help her breath if necessary. The worst case scenario would be surgery number four to replace her mitral valve with an artificial one. At this point, there are more things that need to happen before any decisions can be made. They are going to start by weaning her off the ventillator and see how far that takes her.

Some good news is that her blood cultures are still negative. They also took a stool sample to see if she has c-difficil bacteria but that turned up negative as well.

Kim and I are both spent and there is no end in sight to Lily's ICU stay at this time.

Holding Liliana for the First Time In Weeks

Both Kim and I got to hold Lily for the first time in weeks this evening and she seemed much happier after that experience. We thought that we would not be able to hold her as long as she had the ventilator in but the said that was not the case. Lily is still spiking fevers but her cultures have been negative. Her belly is also distented but an x-ray showed that it is full of air. According to Lily's nurse today, morphine and some of the other drugs that she is on can hamper the digestive tract but this should all go back to normal when she is off of the drugs. They also were able to come down a bit on the ventilator today Lily is making small steps and, hopefully, we won't have any more major setbacks.

I just got some of the bill from Lily's 2 month stay and they are pretty staggering. The running total is up to $230,000 for 11/4 to 12/24/08. Thank God we have health insurance but I still cannot figure out exactly how much of that we will owe. The added bummer with Lily still being in the hospital at the beginning of the year is that we will have to pay the entire deductible again for this year.

Three Days With Clean Cultures

Well, Liliana has had three days of clean blood cultures but the doctors are concerned because of how the line in her groin looks. The infectious disease doctor said that it looks infected and Lily has had a slight temperature for a bit today. They are going to start her on some antibiotics and look into pulling the line tomorrow. Other than that it is slow going and infections are the name of the game when someone is intubated with lines for this long.

What Else Will Happen This Year?!?!?

Driving to work this morning a deer ran out in front of my car. It came out of nowhere and I had no time to react. Luckily, my vehicle is more SUV / Van than car and it did not come through the windshield. In fact, the deer seemed to bounce of the car and I did not run over it. The damage was fairly severe and the radiator was punctured so I filed a claim immediately and dropped it off at a local body shop and got a rental. It is a "no fault" claim so our rates won't go up but we are out the $250 deductible. 2009 has got to be a better year.

Click on the image to see more pics of the destruction.

Waiting Out the Infections

Lily seems to be battling these infections well. Yesterday, they removed two of her lines that they thought could be the cause of her infections. Ever since then, her temperature has been fairly normal. She just received another unit of blood and is pretty calm. They still have made no changes to her ventilator. At this time, I doubt Liliana will be home before the New Year but, hopefully, shortly after that.

Lots of New Photos

I just finished uploading many new photos to Flickr.

Christmas, Portraits, and some from a kids church service we attended.

Liliana Meets Elvis

Today, when I arrived at the PICU, there was a huge stack of gifts on the chair! All of these presents were for Lily from the unit staff. I placed them all in a bag and counted 10 gifts! Lily had an ultrasound to make sure that there is no yeast colony growing in there. Apparently, one of her cultures grew yeast. Poor Lily just can't get a break. On the positive side, her fever has been gone and her stats look good as long as I have been here.

An Elvis impersonator also visited the PICU and I grabbed this photo. Gwynny and Kim are headed up to the hospital. The nurses are going to put Lily's Christmas dress on (with some alterations) and I will take the Christmas photos of the girls.

It Is Never Easy

Lily has been having spiking fevers the past two days and it was found that she has a blood infection today. She is still on antibiotics and her fever seems to be down at the moment. All of her other stats seem okay when her fever is down. Lily was given another echocardiogram today and they now classify her leak as between minimal to moderate. According to one of the surgeons, it could be because of the infection that the leak seems a little worse today since the added stress can affect her body's healing process. Even so, this is still a much more acceptable valve leak than before. Hopefully, the leak will get better as she heals. I think they will be extabating her (removing the breathing tube) as soon as she gets over this infection.

It has been absolutely frigid the past 24 hours here. It was 1 degree with a -25 wind chill!

Road to Recovery

When I arrived at the hospital this morning, they were just taking Liliana's chest tubes out and she was not a happy camper. Her sedation took a little while to kick in but she is now sleeping soundly. This repair really seems to have done the trick and we are just hoping and praying that it holds together this time.

Lily's cardiologist stopped in last night and said that not only is her heart function good but that it is actually better than normal. I seem to recall one of the surgeon's mentioning this before surgery that since her heart had to work so hard for so long, it actually became stronger than average. Both her respiratory and heart rate are the lowest I've seen during her hospitalization. The resident also stopped in this morning and said she had a really good night.

The cardiologist also mentioned that Lily is definitely a rare case. Her surgeon is head of the department and has done well over 1000 heart surgeries of which about 10% were AV canal defect. Lily is the first patient that he has had that required 3 surgeries in one visit to the hospital. We are just thankful that the third time seems to be a charm. Lily won't be home for Christmas but we are definitely looking forward to Happy New Year.

Lily's Valve Repair Surgery

Liliana's valve repair surgery went much quicker than expected. The surgeon was able to repair her mitral valve using a piece of her pericardium. He said that some of his original repair on the valve had blown out but he is very confident that this new repair will hold. He diagrammed exactly how he repaired it and said he nearly "jumped for joy" with the results. She does still have a mild leak but he said that he could barely hear it. He also repaired a tiny shunt from the previous repair.

We are really hoping that a third time is a charm for Lily and that she can recover and finally come home. After reading some other stories, however, I realize that our 6+ week hospital stay is still on the short side compared to some other families. Kim told the surgeon that this was a great Christmas gift.

Lily Patiently Waits

Poor Liliana has been poked all over her body so much that they have run out of access points so her latest IV is now in her head. She gets restless at times but remains quiet and calm. Her fevers have subsided but they she is still not at a point that they'd feel comfortable operating on her so even though she is scheduled for surgery on Thursday, it may not happen. Someone donated some toys to the Cleveland Clinic Children's Hospital and Lily received an Elmo Live.

We had a terrible drive home in the freezing rain, snow, and ice last night. The roads were all littered with accidents but both of us arrived safely. Unfortunately, we received a rejection letter from the state of Ohio BMCH program because "we make too much money". It appears that someone at BCMH either has no idea what they are talking about or misled us. They told us that it was not an all or nothing program aimed at middle class families to help pick up the slack with medical bills. According to the rejection letter, this couldn't be further from the truth.

Surgery Postponed

Lily's third surgery was supposed to happen this morning but has been rescheduled because of spiking fevers throughout the night. It is tentatively set for Thursday and this means that we will definitely still be in the hospital for Christmas.

While on a short run yesterday morning in 40 degree misty rain, I came to the conclusion that my time spent in road bike racing was easier than these past weeks. My best year I road over 4000 miles and raced in many local races and even finished in the top 1/3 of the Ohio state criterium championship. The high heart rate, white-knuckle races were easier than having to deal with your infant daughter's multiple heart surgeries. I would recommend anyone read "It's Not About the Bike" which details Lance Armstrong's struggle with cancer.

Breakfast With Santa

Saturday morning we took some time out to take Gwyneth to a breakfast with Santa at my Grandmother's assisted living. It was one of the nicer events they have put on that I can remember. I took the obligatory photos but they were definitely not my best. Unfortunately, Santa and the organizers did not follow a basic rule of photography to not attempt a photo of someone backlit by a window. :) Click on the photo or here for the entire set on Flickr.

Sitting with Lily Friday evening

I am sitting with Lily for a few hours this weekend and she is the most awake I've seen here in awhile. Her eyes look very sunken because of they are still trying to get a lot of fluid out of her body. Her third surgery is still scheduled for Monday. This will be a short visit so I can go home and see Gwyneth.

Trans Siberian Orchestra - Christmas Eve Sarajevo

Thanks for all the well wishes

Kim and I want to thank everyone for all of the support we have gotten from everyone. We are both confident that our family can get through this. Things just don't seem to be going as planned but, hopefully, that will change next week.

Waiting for the third surgery

Lily has another surgery scheduled for early Monday morning to repair her mitral valve. The surgeon will attempt a partial repair of the valve with part of her peracardium or that of a cow. If that doesn't seem to help, they will replace the valve with an artificial one. The artificial valve is the last resort and I hope that they can avoid that since it comes with it's own slew of complications.

We are really hopeful that this will finally do the trick and allow her to come home. The more personable of the two surgeons is fairly optimistic but it is difficult to not remain just a bit skeptical since nearly nothing they have told us has come to fruition. He does say, however, that her heart is strong and functioning well excluding the valve leak. At this point, Lily at home for Christmas doesn't seem likely but we are pulling to see her come home by the New Year.

How much more can one family take?

Liliana had her heart catheterization yesterday and the analysis was not what we wanted to hear. Her mitral valve leak has become severe and she will definitely need a third surgery. Apparently, her valve tissue is so abnormal, it has been difficult to solve this issue without resorting to a plastic replacement valve. Lily still has pneumonia and they will probably wait until she has recovered enough to go through yet another heart surgery. The surgeon spoke with us last night and said there was one more thing he could try that did not involve the plastic valve but he wanted to think about it and consult with colleagues. A plastic replacement valve is not an ideal option for an infant since it brings it's own set of complications along with the certainty of more surgeries for replacement.

As if that news wasn't bad enough, my mother had to be admitted for chest pains yesterday. She had a heart catheterization as well and ended up having blockage that required a stent to be used. She is doing fine and will be in Fairview hospital until Wednesday. Gwyneth had to be shuffled off again and is staying with some friends. This entire ordeal is equally difficult on our three-year old as well as everyone else.

I told Kim that if we wrote a book about our experience I don't think anyone would believe what has happened in the course of the last 5 weeks. Not only have we had to deal with Liliana's surgery but it has been intermixed with 3 separate family illnesses and accidents severe enough to require hospital trips.

Putting up the Christmas Tree

Tonight Kim, Gwynny and I put up our Christmas tree and I made a fun little time lapse movie.

Lily's Website

I have created a website for Lily because of all the interest we have had over the past month from many people we don't even know. Many people are also anxious to know what they can do to help us. At this time, small cash donations would be the best help with all of the expense of traveling and staying at the Cleveland Clinic.

Lily is doing about the same and they are still planning on her heart catheterization for Monday. Kim and I are trying to spend some quality time with Gwyneth this weekend.

One Month Mark

Lily has now been hospitalized for a bit over a month for her heart repair. The doctors have told us that this is not a normal case and they are doing everything they can to try and get her home as soon as possible. She seems to be recovering from her pneumonia and cultures have indicated that she does have an infection. They have scheduled a heart catheterization for her Monday so they can get a better look at just what is going on with her heart. There are several things that they will try before considering a third surgery but will have to consider all possibilities so that she can come home.

Kim spends most of her days with Lily. I work and then meet her at the hospital in the evening. Gwyneth spends her days with Grandma and Grandpa and stays with us on the weekends. We both cannot wait to have our lives and our family back.

Below is a very short video of Lily in the PICU.

Back to the PICU

We got a phone call at 2:30 am this morning that Liliana had an episode where her heart rate dropped and her oxygen levels dropped as well. According the the staff, Lily's lips turned blue and they had to give her chest compressions but she was alert at the time and crying. She was immediately taken to the PICU and put back on the ventilator and IV lines were put in. The past day she was having trouble with her feeds. She would cry, cough and throw up even though the feeds were done through her NG tube. The GI team took a look at here and changed her reflux medicine from Pepcid to Previcid.

When Lily first made it to the ICU and was put on the ventilator, her lungs were not responding well at all but she stabilized and is now doing relatively well. The doctor that was on duty suspects that she may have aspirational pneumonia after looking at the x-rays but they have not ruled out complications due to her leaking mitral valve. The pneumonia could be from a feed that accidentally went in her lungs. We had been hoping that Lily would come home this weekend but now we are not even sure if she'll make it home before Christmas.

We've already been here 4 weeks as of today and Kim and I are both incredibly stressed to say the least.

Out of the PICU

Lily was finally transferred out of the PICU and moved to the step-down unit! It has been a long time coming since she had her first surgery on election day (11/4/08). The last bit of IV medicine was removed this morning and all of her medications are oral. The cardiologist that was working this morning said that it is highly likely that she will need the mitral valve replaced at some future time in her life. The replacement valves that they make are much too large for infants and that they will do everything they can to manage her with medications at this point on.

She still has not been fed orally since one day in the PICU and all of her feeds are NG. That will be the next thing that they work on so that our little Peanut can finally come back home and we can return to a normal life.

Happy Thanksgiving to all.

Surgery Day Number Two

Two weeks to the day that Lily was down at the Cleveland Clinic for her pre-admission lab work, she was back in the OR for a second repair on her heart. We know that the surgeon was not really pleased with the initial repair and Lily's deteriorating condition made a second surgery a necessity. The risks of this surgery were the same as the first with the risk of mortality even higher. The surgeon explained that he would entirely reconstruct the walls of her heart with a different strategy he devised with his collegues. We were both very worried to say the least. Lily was the only surgery on the schedule for the day and many of the doctors and nurses involved with her original surgery even came in on their days off to make sure things went smoothly.

We received many updates during the day but in the end, the surgeon was very pleased with the newly constructed repair. He definitely seemed much more upbeat about it this time around than the first. Lily is back in the PICU with all the same tubes and wires that she had the first time around. They discovered an infection in her trachea caused by the respirator and put her on antibiotics. She is doing well at the moment and we are all hoping that she will continue along this path until she can have the breathing tube removed again.

Second Surgery

After our initial elation at Lily's quick progress after her AV Canal repair surgery and what appeared to be a quick recovery, her breathing became very short and labored. She was reintubated and connected back up to all of the medications that she had been weened off of. The surgeons had hoped that she was simply pulled off of the respirator too soon and that some more time to recuperate would help. Unfortunately, it is looking like her symptoms are directly related to her leaking mitral valve and she will be undergoing a second surgery early tomorrow morning to help correct this.

All of the same risks apply with this surgery and we are putting our faith in the doctors here to help fix our little girl's defective heart so that she can come home with us. This entire experience has been temendously stressful and we certainly appreciate those that are supporting us through this. Kim and I had to take some time off this weekend from this place to spend with Gwyneth.

A Setback

Lily has had a spiking temperature for days now. Her breathing has also become much more labored since she has come off one of her heart medications. Yesterday, when she was sitting in Daddy's lap, her main line in her corroded artery pulled out when she twisted her head causing a slight panic with blood all over. Luckily, she had been given a unit of blood earlier in the day and these things always look worse than they are.

Today, they decided to take her back in for a short procedure to put another line back in her arm to put her back on one of the heart medications. Unfortunately, this also meant sedation and she was put back on the ventilator. At this time, it is a waiting game to see if her breathing improves from the medication or if that and her temperature is a result of some yet to be detected infection. One other contributing factor would be her leaky heart valve and the worst case scenario would be a valve replacement surgery. That would be a last resort and they would exhaust all other options before discussing surgery.

Needless to say, this is rather stressful and shocking considering how well she had been doing up until this point.

Post Surgery Update - Day 6

Slowly, the tubes and wires are being removed from Liliana. The ventilator was removed a few days ago and she is getting a little oxygen. Only one IV connection remains in her neck and she has been eating from a bottle the past two days. Kim has also been able to hold her again. The doctors all say she is still doing great. They want to wean her a bit more from some of the remaining medications in hopes that she will be moved to the step-down unit tomorrow.

I have gone back to work as of today but Kim is still coming down to the hospital each day even though she is feeling a bit under the weather. When she gets to the step-down, feeding will be the next goal. It is hoped that she will not come home with her NG tube and so far she is feeding really well by mouth.

Recovery Day 3 Update

Lily is doing well and still in the PICU at the Cleveland Clinic. They began weening her off the ventilator overnight and they want to remove the breathing tube today. Her chest tubes were removed yesterday and a follow up chest x-ray looked good. We also found out that the echo-cardiogram given after surgery looked better than the one given immediately after the repair. We were told that the leak had lessened.

She is starting to become more alert and active as they reduce the sedation and pain medication. During rounds, it was also mentioned that they would try and remove one of the other lines today as well. Kim will probably be spending the night with Lily tonight and I will be staying here tomorrow before returning to work on Monday.

Kim and I are both very pleased with the care she is receiving here at the Cleveland Clinic. There is a very large team that do rounds in the morning and there is a nurse in the room quite often. Gwyneth also seems to be doing fine after getting the antibiotic for her UTI.

Surgery Day

Yesterday was a long day to say the least. Lily's surgery went well but was not perfect. The surgeons attempted to repair her heart 4 different ways to try and construct the chambers and valves but in the end she is left with a "moderate" valve leak. The surgeons told us that it is not uncommon for valves to be leaking after an AV canal repair and that Lily will probably require another surgery at some point later in life to repair this. The good news is that the chambers have been repaired and she seems to be doing well. Where her heart was performing at 300% with the defect, it will only be performing at 115-120% to make up for the leaky valve. Her cardiologist said we will still see a tremendous difference in her. Some of her symptoms can even be treated with medication.

Lily is still in the PICU on a ventilator with many lines connected and is heavily sedated. She will be in here for at least another few days until she can breath on here own 100%. At that time she will be transferred to step-down unit.

If that wasn't enough, Kim and I had to meet my parents at Fairview General Pediatric ER last night because Gwyneth had a high fever and was vomiting. As it turns out, she has a UTI.

I am back at the PICU this morning for rounds and they say she is doing as well as can be expected.

Surgery Day Set

Last thursday, Kim and I took Lily in for a scheduled visit to her cardiologist at the Cleveland Clinic. Her weight was at 4.945 kg with a goal of 5 kg for surgery. The doctor said he was still planning on a mid-November surgery date. We also met with one of the surgical nurses who said she would call us back with available dates for scheduling the surgery but she know that November was filling up fast. The next day we found out that the only available date was election day, November 4 so we took it.

We will be taking Lily down to the clinic for her barrage of pre-surgical tests and then she will be checked in for her open-heart surgery on Tuesday. We are both anxious to get this over with as well as nervous. Even with all the reassuring on how good they think she will do and the fact that she will be at probably the best facility in the world for heart surgery, we are both understandably nervous. Lily's surgeon will even be the current head of the department who took over for the famous Dr. Mee who helped make the Cleveland Clinic the best heart hospital in the world.

In fact, there has been a book written about the pediatric surgical unit at the clinic entitled Walk on Water: Inside an Elite Pediatric Surgical Unit.

Lake Erie Sunset

I took these photos on the evening of 9/18/08 at the beach where Columbia Rd. hits Lake Erie and at the Rocky River fishing pier. The entire set is on Flickr.

Metallica - The Day That Never Comes

Muse - Map of The Problematique

Dealing with Tube Feeding

Lily has been home since Sunday and Kim and I have been trying to adjust to the NG tube feeding. She eats by mouth 4 times per day for 15 minutes and the formula she does not consume in that windows is given via her tube. The tube runs from her nose directly to her stomach. She is fed with a computerized pump all night at a rate of 20ml / hour for 10 hours.

We were both trained on the usage of the pump and the proper care of her NG tube. I even placed a tube in her nose so that we are confident we can replace it if need be. Lily left the hospital at 8 lbs 4 oz and we are hoping that she continues to grow so that she can finally have the heart surgery before the end of October. Kim is now on her FMLA leave and will be home until after Lily recovers from the surgery.

Needless to say we are both pretty exhausted. The continuous, 10 hour feed requires 2 refills of formula during the night. We are getting better at it but a night of broken up sleep is never very restful.

No New News

Lily had all of her tests conducted yesterday at the Cleveland Clinic. Her GI system is normal and she is having some issues with swallowing. Kim and I suspected the swallowing issues but her normal digestive tract is welcome news. She has already gained about 8 oz. from being in the hospital only one day! The doctor's are only allowing her to drink from the bottle for about 15 minutes and the rest is tube fed. She also gets 20cc of formula per hour dispensed through her NG tube for 10 hours while she sleeps.

Lily should be discharged in 3 to 5 days at which time she will come home with the NG tube in place. Kim and I will be trained on how to care for Lily and place the tube and Kim will start her FMLA at that time. We are both hoping that Lily gains weight quickly so that she can get her heart repaired soon and be on the road to recovery.

No Weight Gain

Lily is being admitted to the Cleveland Clinic Children's Hospital today because she has not gained weight for two consecutive weeks. They will perform the GI and barium tests that they had previously scheduled while she is down there and place an NG feeding tube. They will monitor her feeding for about a week to see if she gains weight or not. While she is there she will also be evaluated by one of the chief heart surgeons. If she does well on the tube, she will probably come home for a bit to gain weight in preparation for her surgery. If not, they may go ahead and do the surgery while she is in there. It is difficult to say right now.

This is not unexpected and the cardiologist has forewarned us that this would happen as she grows older. The feeding will not be an issue once her heart is repaired.

Marching Band Dance

Saturday we met some friends at a local high school for a demo of 4 local marching bands. Each band played their half-time show and Gwynny had a blast.

Enjoy The Silence - Lacuna Coil

Main Campus

Kim and I took Lily to the Cleveland Clinic main campus on Friday for an appointment with the pediatric cardiologist there. The doctor we were seeing at Fairview Hospital (Cleveland Clinic hospital) wanted us to start seeing the doctors at the main campus as the time for her heart surgery gets closer. While we were there, we also spoke with the doctor who will be Lily's surgeon. Both of these doctors are extremely nice and explained everything in great detail. The surgeon reassured us that Lily's defect is quite common and something that he has dealt with many times before. In fact, he said that only 2 infants have died since he has been working at the Clinic both of which were weeks old with massive problems.

It seems that kids with Lily's heart defect actually have stronger hearts than normal and this is why they can have an issue with gaining weight since the heart consumes all of the calories. She was put on another medication to help her heart beat a bit stronger in the hopes that she will gain some more weight before the surgery. As it stands, it looks like she will be having the surgery after she is 3 months old but before the viral season starts. Everyone is reassuring us that we will have a new kid after the surgery. Right now her feedings are quite frustrating since she does not want to eat.

Inching Closer

Lily's next cardiology appointment will be at the main campus of the Cleveland Clinic. We will consult with doctors there as we get closer to the time of her surgery. The doctor and nurse were blown away by her good condition yesterday. They said that she is doing great and that she will be a different kid after her heart defect is corrected. Kim and I are both nervous and excited to get this major hurdle behind us. Lily's feedings have and continue to be a pretty significant challenge.

Tired

Things are still slow-going with Lily. After having a great week gaining weight, she only gained 2 oz. last week. This means we won't be trying to get her to sleep through the entire night anytime soon. We have also decided that Kim is going to attempt and return to work this fall. She tossed around the idea of tutoring from home but we just don't see how we can work it out without paying for a sitter.

The reality hit us when we got a bill from the hospital for nearly $50,000 for Lily's NICU stay. This is the bill that will be submitted to the insurance company and it will be reduced since the Cleveland Clinic is an "in-network provider". With all of the digging, however, I just can't figure out how much we will owe of this. All that we know is that the social working at the hospital just kept telling us to brace for large medical expenses.

I'm sure many acquaintances and family members will be judgmental with this decision. My thought is that if you aren't willing to help or give constructive criticism, keep your opinions to yourself. This is a very difficult time on so many levels and I am tired of hearing the "encouragement" from the clueless with religious anecdotes, etc.

I find it interesting how people view an event like this as "faith strengthening". It has definitely strengthened my belief that if there is some kind of God or greater power out there in the universe, it is nothing more than the spark of creation and has nothing to do with how our lives play out here on Earth. After all, the same Bible existed 100 years ago when Down Syndrome babies were institutionalized with no chance of a semi-normal life. It is modern science that has given us hope.

Gaining Weight!

Lily had an appointment at the pediatrician's office yesterday and she had gained 7 oz! This is 1 oz per day since her last appointment and the doctor was very impressed with her progress. She also commented that her muscle tone seemed a bit better. She continues to have periods of COLIC during the day but sleeps through most of the night with only one feeding.

The nurse that had been visiting Lily commented that she does not seem as problematic as some of the other Down Syndrome children she has seen. One little boy needed heart surgery immediately after birth.

Switching Formulas

Lily had her best day yet yesterday. After not gaining any new weight since she has come home and some overall crankiness, we switched her to a soy-based formula. So far this seems to have done the trick since Lily has been getting a lot more sleep in between feedings. She has another appointment with the pediatrician next Monday to check on her weight. At least she is finally starting to slip into a routine.

Cycling to Work

I finally got my act together and have rode the 2-2.5 mile commute to work on my bike the past 2 days. Cool morning temperatures and a short ride don't really require much in the way of gear so my backpack remains fairly light. In fact since I do a majority of it on the sidewalk, I even forgo the helmet. I'll have to see how long I can keep up the riding but so far it's no big deal. I can make it to and from the office in about 15 minutes and I figure I save about $1 in gas each day.

Ideally, I'd love to do this as much as I can. The trip is so short, I could do it well into the cold fall.

Finally Coming Home

Lily is finally coming home today after 2.5 weeks in the hospital. It will be nice to start getting into a routine that does not include driving back and forth to the hospital every day. We are all very excited and hoping for the best.

Let me enlighten you...

Some Good News

Lily passed her 3rd attempt at the hearing test with flying colors! She had previously failed the two in the hospital. I guess we can chalk that up to excessive fluid from the c-section. We are still looking forward to her release early this week.

George Carlin Dead at 71

RIP George.

Coming Home Soon

Lily is doing really well with her on-demand feeding schedule. In fact, the doctor has said that she should be able to come home in the next few days! Unfortunately, I did not get to see her tonight as Gwyneth woke up from her nap this afternoon with a fever.

A Different Strategy

Today the doctor at the NICU decided to put Lily on an on-demand feeding schedule. Basically, they wait until she wakes up hungry and then just give her what she will take without tube-feeding the rest to her. It seems that she did much better on this schedule. We also got the results that Lily does indeed have Trisomy-21 (Down Syndrome). Kim also happened to speak with a nurse who's god-daughter has Down Syndrome and she said that she is now 22 and graduating from High School. Right now we are hopeful that she will come home sometime in the near future. We also have a meeting with a doctor at the hospital on Tuesday afternoon.

Making Progress

Just a quick update on Lily. She did really well with today's feeding. In Fact, she woke up two hours after a previous feeding crying and hungry. Kim has also been working with the nurses trying different bottles. This is great news considering that she has always had to be awakened for all of her feedings. Hopefully, she will continue to make progress and be home soon.

What is Down Syndrome?

Click here for a great and simple explanation of what Down Syndrome is.

Holding Pattern

Kim was released on Tuesday evening but Lily remains in the NICU for the time being. She is having trouble feeding on her own and we are hoping that she does not remain in there for too long. It is getting difficult to split our time between the hospital and home and between Gwynny and Lilly and some stuff at home is also starting to pile up a little. I will be returning to work next week and Kim has one more week of not being able to drive. She will be dropped off at the hospital each morning and I will meet here there after I put in my eight hours.

Putting Things Into Perspective

It's been an interesting week to say the least. After what appeared to be a normal C-Section we were shocked to learn that there is a high percentage that Lily has Down Syndrome as well as a congenital heart defect. A pediatric cardiologist with the Cleveland Clinic spoke with us regarding her heart condition and the treatment. The good news is that her heart defect is fairly common and fixable. She will require surgery at 3-6 months to fix her heart and should not have any other issues after that and everyone knows that The Cleveland Clinic is the number one cardiac center in the world.

The Down Syndrome needs to be verified with chromosome study. I've been doing a lot of reading on it lately and it's basically an extra chromosome that is introduced at conception and it's a more common occurrence with older mothers but can happen to any mother regardless of race, nationality or socio-economic status. This genetic abnormality is in no way preventable and 90% of pregnancies that test positive for Down Syndrome are aborted. Kim and I refused all the prenatal screens figuring that we would keep our child no matter what. The doctors who have seen her at Fairview are fairly certain that she has Down Syndrome but we need the test to be certain and I never realized just how high the odds are for women as they grow older. Lily will also have to see an audiologist and possibly have tubes placed in her ears to drain fluid. The congenital heart defect, hearing, etc. are all physical symptoms of Down Syndrome.

Our life will definitely be challenging but Kim has experience working with the mentally challenged and we've both adopted a positive attitude towards this. Lance Armstong said that cancer was the greatest thing that ever happened to him and we are both looking at it from that perspective. There are some amazing things being done with children who require "special needs" right now and we do not consider this necessarily a "bad" thing. It may seem "politically correct" but when I told this to my Dad (who is in a nursing home with MS) he said that we will have an "exceptional" child. After reading several stories about kids like Lily, I now truly believe that.

This has all really put things into perspective for us and I hope everyone understands if I cannot immediately deal with work issues at least for the next few days. Kim and Lily will be discharged tomorrow but it will be a long road ahead with doctor's visits, therapy, etc. When Lily was taken down to the NICU for heart observation and before we had any information, we feared the worst. Now we are just happy to have a little one no matter what her issues are.

The Big Office Move

Well, it finally happened and my company moved it's offices across town to within 2.5 miles of my house. The building is much nicer and the commute is going to be awesome. Being this close to home will open up a wealth of opportunities for making my life more productive for the most part. As soon as my wife is off for summer vacation, I can start riding my bike to the office!

Castaway Bay

At the end of last week we spent a few days at Castaway Bay in Sandusky. This is a resort with an indoor water park. Gwynny had a ball at the park! Each night was karaoke and a dance party with Snoopy which Gwyneth also loved. Full photoset is available here.

Easter Egg Hunt

Gwynny went on an Easter egg hunt yesterday and had a great time! Unfortunately, she was afraid of the Easter Bunny and would not sit in her lap for a photo. The complete photoset can be found here.

Spring is in the Air!

The clocks have already been changed and the snow is slowly melting. I am looking forward to spending more time outside of this house in the fresh air. With a little one on the way and my office moving to within a 3 mile drive of our house, the next 3 months should be interesting. Now, if I could just find the time and money to get back into cycling a bit more.

March 2008 Winter Blast

This past weekend were were treated to 24+ straight hours of snowfall that accumulated aver 18" on the ground and practically shutdown the entire city. Everyone was trapped inside their homes from Friday night through Sunday morning with the occasional outside snow removal excursion. Here's hoping that the snow is nearly over.

Check out a complete photoset here.

February is the Longest Month!

Wow, for such a short month, February draaaags on with no end in sight. It's most likely the fact that I have no days off and football season is over. I went for a two mile run tonight with the dog in the sub-20 degree weather. The ground had warmed just enough to remove the ice from the blacktop and sunset wasn't until 6 pm. March always means about a month or so to go until Spring. I realize we get snow here in April but at least the end is in sight! Warmer weather is on it's way and I'll be on my bike again!

I've not ridden my stationary trainer at all this winter. I guess I just needed a change and I realized that I won't log as many miles with the newborn on his or her way. As I grow closer to my 40th birthday this year, I'm mulling the usual things that most people do when they reach "mid-life". I really hate that expression since absolutely no one knows how long they have on this planet. Anyway, I'm thinking I really need more creative outlets. Need to get some more time in behind the camera that doesn't simply involve more family snapshots.

Quake on the Nokia N810

Zoo Trip

Sunday, Kim, Gwynny and I made a trip to the Cleveland Zoo to visit some of the indoor attractions. We got to visit the Rain Forest and the Cat & Primate Building as well as a few of the outdoor exhibits. Wintertime is a great season to visit the zoo since it is practically empty. Some of the attractions are closed but many of the outdoor animals are more active because of the temperature. Fun was had by all!

More great photos from the trip can be found here.

Doom on the Nokia N810

A short video of Doom running on the Nokia N810.

Canon PowerShot A720 IS

Last weekend we attended a wedding and Kim took along our 2+ year old Nikon Coolpix 4600. I had never really taken many shots with this P+S camera but soon discovered that it's virtually unusable in less than optimal lighting conditions. Kim always complained of this but I chalked some of this up to operator error. :) P+S should mean POS for this old Nikon.

So I decided to research and purchase a new compact digital camera with some of our Christmas cash. I settled on the Canon PowerShot A720 IS for those times when I don't feel like lugging the d70. I hadn't researched compact digital cameras for quite awhile but was blown away by this thing. I originally thought about getting a pocket-sized camera like a Casio EX series or Canon Elph but this PowerShot isn't that much bigger and is packed with features.

This camera has a 8 mp resolution and does up to ISO 1600. It has a 35mm equivalent zoom range of 35-210mm with Canon's Image Stabilizer system. The software allows for aperture, shutter priority and full manual control. It runs on AA's which is a mixed bag. I have a ton of NiMh AA's which is great but flash recycle time isn't that great. Apparently, the li-ion batteries of some of the newer cameras allow for a flash charge time of half of this camera but we all know that built-in flashes suck. I figured the higher ISO and IS are more important. This camera will also work with a small, external flash but it no longer becomes as portable at that point. Oh yeah, it also takes great photos and is fairly quick with virtually no shutter lag. It also has the "face detection" technology that virtually all other cameras have now. Not sure if this is gimmicky or if it really helps enhance portraits yet.

The best part is that I got this locally for only $200. You can find the PowerShot A560 with a shorter zoom, no IS, and 7 mp for under $150 as well and Ken Rockwell loves them. :) Both of these cameras are awesome in the bang for the buck category. I love my Nikon dSLR but Canon seems to have the best pocket digital cameras out there right now.

I'm still blown away by this camera and the $200 price. Now I have to see if it is worth Ebay'ing the old, barely used Nikon.

Steve's Digicam's Review

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Nokia N810 Internet Tablet

I got the new Nokia N810 Internet Tablet and must say that this thing rocks! The processor speed has been bumped up to 400mhz and the browser now completely supports most AJAX and Flash sites including Google Docs and Flickr.  I love my iPhone but the N810 makes an excellent device to carrry around instead of a notebook with it's 800x480 resolution screen and builti-n thumboard..  Add a bluetooth keyboard and it can virtually replace a notebook.



I love my MacBook but let's face the facts. It's hot and has a crappy battery life of 2-3 hours. The N810 is pocketable and you never really shut it off. It just goes to sleep. It does VOIP through Gizmodo and Skype, makes a great IM client with the built-in keyboard and I can remotely access computers with VNC, Remote Desktop and ssh via the terminal application. The built-in thumboard makes applications like terminal and VNC practical now for real work.

Multimedia is not as good as the iPhone. The iPhone has a 600mhz processor and dedicated video subsystem. It can easily playback movies that I have encoded in full DVD resolution for my AppleTV. While the N800 has a higher resolution screen, it lacks the horsepower to properly playback full resolution DVD movies. That being said, properly encoded movies play just fine and the built-in speakers are stereo while the iPhone only does mono. The N800 also can access the Rhapsody "all you can eat" music service wirelessly. You can't download music from the site onto the device but you can queue up songs from you library and stream them just fine.

The N810 also includes a built-in GPS chip and has WayPoint navigation software built-in. This software is less than stellar but you can download and install Maemo Mapper for free. It also comes bundled with a car cradle and stand for use as a car navigation system making this a very nice car computer. Time will tell if developers capitalize on the built-in GPS for other applications.

Overall, the N810 is an excellent device with great build quality. It's another stellar device from Nokia. I wish they would market this device differently. Calling this an "Internet Tablet" is misleading. This is a full-blown pocketable computer running LInux.

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Mac OS X 10.5 Leopard Bugs

Well, Leopard finally arrived and there are some really cool features packed in. It definitely blows away Vista and I'm amazed at what Apple can churn out. Unfortunately, there are some glaring bugs in this version. Some of the new features just don't seem to work at all. Here is a partial list:

- Windows shares just don't show up in Finder as advertised.

- Can't change the Windows network name in system preferences. Whatever I put in there is not saved at all.

- "Back to My Mac" feature just does not work even with their recommended router. 

- Time Machine seems buggy and there is a "progress" window that you just can't get rid of. I thought this was all handled in the background?

- iChat quit on my forcing a reboot that led to non-working WiFi that required an AP Extreme reboot as well as a 2nd MacBook reboot.

More to come...

 

Thinking Different

Perhaps people experience a mid-life crisis when they discover the truth. Life is nothing as well as everything. You can reboot your life at any time. Escape the slavery and free your mind. You have all of the power in the world. Use it.

We Are Living in a Matrix

I realize that there is probably a ton of misinformation in the Zeitgeist movie but I believe the underlying premise. We are all slaves to this system. Slaves to "the matrix" mankind has created. Slaves to debt, slaves to media, slaves to religion...

You can break free. Take the red pill.

Latest Project

I have a Kill-A-Watt power meter coming today from New Egg. I've got way too much crap on 24x7 sucking down juice and want to meter that appropriately. I got a new logic board battery for my PowerMac to allow it to sleep again so I don't have to run it 24x7. Perhaps I can use WOL to bring it up remotely as well. My RAID-5 Linux box seems like overkill. I really don't need the RAID-5 protection since it's mainly just a backup disk. I want a machine that provides NAS, ssh tunneling, and perhaps iTunes serving. I'm thinking of just using the Mini-ITX PC that was my media computer. I'll connect 1 gb of disk to it via usb. It's small enough to fit in my stereo stand that I use as a network rack. Unfortunately, I'll have to run XP. I'd much rather run Linux on it for many reasons but using it as an iTunes server is key.

The best thing would be to use a Mac Mini as a server but I don't want to spend the cash right now. It could replace the PowerMac G4, Mini-ITX PC and the Linux RAID server. Perhaps I'll keep my eye out on Ebay.

iMovie 08 Not As Bad As First Thought

I have nearly finished editing my first video in iMovie 08 and there are more than a couple of things that I like about it. Unfortunately, it is definitely a version one product and needs quite a bit of improvement. First of all, the skimming feature really makes editing a breeze. Everything you do is nondestructive. This is something that I've wanted in iMovie for a long time. The audio editing is terrible to non-existent. Even changing the volume in multiple clips is quite a chore.

I've seen some complaints that iMovie is unstable but that is not my impression at all. In fact, it seems much more responsive than 06 ever was. iMovie 06 used to always pinwheel no matter which Mac I was running it on. I'm hoping that we some updates to this program over the course of the year. I'd hate to have to wait another year for more features to be added to flesh this thing out.

iMovie 08 Immediate Impressions

I'm about to turn in for the night but I've played a bit with iMovie
08. After our mini-dv camcorder bit the dust, I picked up a Sanyo
Xacti C6 digital MPEG-4 camcorder (damn you Adam Curry!) and I have
not made a DVD since. I have moved on to posting to Google Video. I
usually avoid YouTube because of the size restrictions. That said, my
initial impression is that iMovie 08 is geared more towards web video
publishing. After all there is no iDVD integration. I think the
writing is on the wall for home-made DVD's. Burning DVD's is time
consuming and wasteful to say the least.

Now after playing with this for awhile I must say that I'm lost. I
guess I'll have to go over the tutorials when I have a bit more time.
It's not at all intuitive.

Restarting this blog

So, I'm redoing my website in iWeb 08 and trying to bring this blog back to life. I was using Tumblr as a blog but have decided to put my original posts on this site. They will still be aggregated at Tumblr.

I was able to throw together a basic iWeb site very quickly that looks decent. I just don't have the time nor the inclination to develop anything too elaborate or customized at this time. My previous homepage was done with Google's fee page editor but thought it really looked bad. This new look is much better.

Fascinating High Res Galactic Imagery

Stunning pictures of galaxies and nebulae. Many of the photographs are large enough to use as backgrounds for all but the largest monitors.

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'Bride' Stripped Bare

Cool article about the digital gear and process used to make the animated move "The Corpse Bride".

David Weiss: A Tour of Microsoft's Mac Lab

David Weiss: A Tour of Microsoft's Mac Lab

Geek to Live: Develop your (digital) photographic memory

Great ideas for using your camera phone + flickr to record and catalog things other than just snapshots.

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Iraq War TImeline

Here is a timeline that I found documenting the current conflict in Iraq. On May 1, 2006, it will have been 3 years since Bush declared "mission accomplished" in a military flightsuit abord the USS Lincoln.

ILM’s state-of-the-art (storage) studio

Industrial Light & Magic uses high-speed NAS servers with a distributed file system, 10gb/sec Ethernet, and a 5000-node renderfarm to store and move 170tb of content.

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Apple's Mac Os X 10.5 Leopard Will Probably Run Windows!

Rumors have been brewing that Jobs and co. are taking steps toward allowing Windows apps to run on Macs. Now evidence has surfaced that Apple has begun the process toward doing just that!

Is this the beginning of the end for Microsoft's juggernaut 95% market share?

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Babies decide what words to learn

Like teenagers, babies don't much care what their parents say.

Though they are learning words at 10 months old, infants tend to grasp the names of objects that interest them rather than whatever the speaker thinks is important, a new study has found.

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Windows vista delayed to 2007

Microsoft has delayed the release of its forthcoming Windows Vista operating system to 2007.

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Life Expectancy Calculator!

This is the test that insurance companies use to calculate your probable life expectancy! This test merely calculates the probability of your life expectancy based on your habits and environment!

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Iraq Three Years Later: The Path to War

This is the best and most frank recap of what led up to the Iraq war. The pronouncements made by members of the Bush administration are startling considering what was actually found and what actually took place. It is clear to me that this administration did more than act on bad intelligence.

NPR Article

Radio dial scan from the night John Lennon died

Amazingly, 25 years ago somone recorded a dial scan of their radio on the night John Lennon was murdered. A fascinating way to capture history, and something that might become impossible if the Radio Flag legislation goes through.

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In What Language do Deaf People Think?

An interesting column on how the prelingually deaf think since they've never been exposed to spoken language.

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Google Wins - No Search Records Revealed to Govt - Ruling Official

http://www.google.com/press/images/ruling_20060317.pdf

Google will not have to hand over any user's search queries to the government.

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Ultimate Web 2.0 Websites List

For all those Web 2.0 hungry people here is a link to all the web 2.0 websites.

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Star Wars, the TV series, is GO!

The new Star Wars TV Series will have more than 100 episodes, and is expected to debut sometime in 2008.

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How The Bush's Helped Hitler Rise To Power

Rumours of a link between the US first family and the Nazi war machine have circulated for decades. Now the Guardian can reveal how repercussions of events that culminated in action under the Trading with the Enemy Act are still being felt by today's president

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Finally, The Windows On Mac Contest Has Been Won. $13,000 Prize!

Contest has been won - updates to follow shortly. All further donations will go into an account to sustain the open source project that will be launched with the initial solution.
Thanks to Journalspace for hosting this contest in our hour of need!

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Google Video

It looks like Google Video is now open to the public. I uploaded a home movie there yeseterday and it was approved and posted. Zero cost and hopefully and infinte archive time.

Preparing for Gwyneth

Einstein Hated Marriage, Alcohol, Spelling. Plus, His Cat Was Depressed.

Read 10 obscure (but true) things about Albert Einstein that you almost surely didn't know.

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