Today is Thomas's due date! He celebrated by going to the Millenium Mall in Orlando and a visit from his Great-Great Aunt this evening.

Tomorrow is the first follow-up visit with Dr Burzynski, his cardioligist. Wish him luck!

Thomas is one month old today, it has been a very eventful first month that is for certain! He has been home from the NICU for over a week now and, fingers crossed, he is still doing just great.

The first few days where a little rough (actually the first few nights!) as he got used to his new surroundings. Like most newborns, he has his days and nights a little mixed up. He is sleeping a better at night now and we are getting used to sleeping when he does. One advantage of him spending so much time in the NICU is that he is used to sleeping when there is a lot of noise. In a house with 8 people, there is always a lot of noise.

Thomas came home today after 20 days in the NICU! We are very grateful to the entire staff at Arnold Palmer for saving our little boy's life and for their excellent care over the last few weeks, they gave us a miracle.

He had his circumcision this morning which went very well, he is a little sore still but will recover quickly. No, we're not Jewish - this is a standard procedure in the USA. I was circumcised at 12 years old and trust me it's worth doing it when your baby is too young to remember. Ouch!!

He did very well on the car ride home, sleeping all the way. Once he got home he woke up and had some food then stayed awake for a while taking in his new surroundings and meeting various family members. I'm very proud to say one of the very first things he did was spend a good 15 minutes gazing at the computer. Our dog, Dougal seems to be OK with the new human puppy, he is used to small children but has never seen one quite this small!

Thomas is being discharged tomorrow!!!!

We had training today on how to give him his medication once he gets home, he takes very small doses (a matter of a few micrograms) so they have to be given with a syringe - the last time I used one was 8 years ago in science class.

Thomas is getting really good at bottle feeding now, he'll be a professional at it before long, 85ml's today at one of his feedings (3oz)! When I fed him tonight he pulled the bottle back when I tried to burp him :-)

He was taken off the apnea monitor today, which monitors his heartbeat and respitory rates and Lipman feels there is no reason for him to come home with one as he did not have any episodes during his stay. He is now completely free of tubes and wires. The final medical procedure will be tomorrow when he is circumcised. I was circumcised aged 12, I would not wish the pain I went through on anyone so it is better to just get it over with when he is too young to remember.

Thomas has been switched to ad-lib feeding, eg only being fed when he asks for food rather than every 3 hours, one more step towards him coming home. We are keeping our fingers crossed that he will be home tomorrow or Saturday!

Happy Thanksgiving everyone!

Thomas ate all of his feeds yesterday! He is eating much better now, instead of sucking as hard as he can until he goes wide eyed and starts choking he is learning that he doesn't have to go quite as fast to get his milk (very cute to watch). They have increased the dose and calories in his formula (Enfamil) as he was not gaining weight, we'll find out today how much of a difference that made.

He has an Ultrasound scheduled for this morning to see how his heart is doing, we will know the results either later today or tomorrow.

Tomorrow is Thanksgiving in the US, a tradition I've been very happy to embrace since moving here. We certainly have a lot to be thankful for this year.

Update: 09:58: Dr Lipman just called to give us the daily progress report. He says Thomas is doing really well and has started gaining weight again. If he continues to improve he will be coming home in 2 days!

Thomas ate almost all of his feeds yesterday through the bottle, he only needed half of one through the tube. He is slowly getting the hang of sucking and breathing at the same time.

He has another EKG today to see how his heart is doing, results as soon as we have them.

Our little boy slept through the entire 6 hours we where visiting today. He apparently had a very busy morning though, managing to drink to full bottles of formula - that's a huge step forward. He woke up very briefly when the Doctor examined him and then fell back to sleep.

On Friday afternoon he had a stress test, basically the regular examination all newborns get to test his hearing, reflexes etc. - because he is a preemie the examination was a little more involved. Thomas was not impressed by all the prodding and poking and so was not very cooperative, I must admit I didn't care for the nurse examining him either. However, he passed the tests OK.

Thomas had another tube removed Saturday, the one measuring his blood-oxygen level. It is supposed to be close to 100% and has remained there ever since he was put on medication so the doctors do not feel it is necessary to measure it anymore.

We had a long conversation with Dr Burzynski (I think I spelled that right!) his cardiologist today. He is very confident that Thomas will make a full recovery but it will take time. In his opinion whatever caused Thomas's heart problems was a very large infection or trauma during birth. We will likely never know what the real cause was, however.

I have been remiss in not mentioning who is caring for my son, these people are all highly recommended if you are ever in the same situation:

Dr Bayouth - Gynecologist
Dr Lipman - Pediatric Specialist
Dr Burzynski - Cardiologist

Plus a bunch of very talented nurses and support staff at Arnold Palmer NICU.

Thomas was removed from the NICU last night and placed into a regular nursery ward. He is getting better at bottle feeding and slowly being weened off his feeding tube.

Thomas continuing to improve, he is now taking 2 - 3 bottle feeds per day and his vitals are continuing to remain stable. Once he is on permanent bottle feeds and his stats remain stable he can go home.

He actually stayed awake when I picked him up yesterday and couldn't keep his eyes off me, so maybe I'm not so boring after all. Since he is off most of the tubes now (the only one left is a feeding tube) he can wear clothing so we brought his own clothes from home. The child has more clothes than I do, the net result of my wife working for Gymboree for the last 18 months (before she went on maternity leave).

I am totally convinced he and the two babies on either side are having some sort of competition to see who can make their alarms go off the most. They have all worked out that if they wiggle around enough the monitor starts going off and they get attention. It's cute :)

Thomas is continuing to improve and tests done on his heart show that it is 50% better now than two days ago.

They are going to remove his feeding tube later today and see how he goes with bottle feeding. If all goes well he will be moved from intensive care to a lower risk unit by this evening. Wish him luck!

Thomas was taken off of the CPAP yesterday morning and his vital signs continue to remain stable. He is now breathing completely on his own. We finally are able to get a proper look at his face. He definitely has my eyes and his Mommy's nose and chin. He has been much more settled since the CPAP was removed. If he continues to improve he is going to start learning how to bottle feed in a couple of days. Judging by how much he loves his Binky (Translation for English readers: Dummy) we don't think he'll have any trouble.

We where able to hold him again yesterday, he once again looked up at me and then nuzzled into my arms and fell asleep. He's either really comfortable being held or just finds me very boring :)

Results from the EKG and Ultrasounds on Thomas's heart showed nothing unusual - this means we are now cautiously confident he has a virus causing his heart not to pump hard enough!

He is responding very well to the drugs he was put on yesterday and they have reduced his oxygen to 23%. If he continues to improve he will be taken off the CPAP today and placed on a Canulla.

A CPAP blows purified oxygen directly into his nose to keep his lungs open, the idea being he doesn't have to breathe so hard. The disadvantage is it is very uncomfortable for him as it is positioned inside his nose, it also causes a buildup of air inside his stomach (picture really bad indigestion) that has to be sucked out every couple of hours. A Canulla sits under his nose and is much more comfortable (ER has one in just about every episode, it's a thin plastic tube), however it is less effecient. The next step will be allowing him to breathe completely on his own.

Thomas had an Ultrasound on his heart yesterday to try and determine why he is still not getting enough oxygen. At this stage it has been determined his heart is not beating hard enough, however we are not sure what the cause is yet. He has been placed on some medication to see if it is an infection and they are doing some more tests.

He is down to 25% oxygen now and his vital signs have improved dramatically over the last day or so. Fingers crossed this will continue!

I have gotten some e-mails from other Slashdot readers I've never met wishing us well - I want you to know we are very moved by your the support.

Thomas gave us a little scare this weekend and had to be put back on the CPAP because he was having trouble breathing, he is back down to 27% oxygen (healthy people breathe 21% so that is a lot better than it sounds!) and we are hoping he'll be taken off soon.

We finally where able to hold him on Saturday which is a big relief. He took one look up at me, nuzzled into my arm and fell back to sleep - I'm taking that as a good sign.

Thomas is now off the IV and eating regular formula.