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.