Wednesday PM - I'ts later than I wanted to be since the last post, but most of what new has happened has been in the last day or so. Adam is making great strides with his bottle feeding, which is happening twice out of the eight times per day that he eats. He's getting close to an ounce per session, which is great progress for him. The therapist who is working with him is very encouraged. If we can get him eating an adequate amount through a bottle, he won't have to have a tube that runs directly into his stomach from the outside (this would be another surgery). His nasal cannula was also removed today which is also a big step. You can see his face, of which I took some digital photos today and hope to have them on the Walgreen's web page soon. Go ahead and look at the Walgreen's page now if you have the time, as I uploaded about two months worth of additional pictures today. Sorry, still no captions but email me if you have any questions.

Adam had to start the smurf medication after all. The good news is that it's having it's desired effect, and his heart rhythm looks great. We'll have to keep him out of the sun until he's off it, or use a lot of sunscreen and keep him covered. He's also very close to being weaned completely from his pain medication.

Grant seems to get bigger and more mature every time I see him. He laughs, tries to talk, and enjoys sitting in his bouncy toy and watching Barney (oh well, can't win them all). Heidi and I switched places again last night, and I stayed home with Grant. I'm not sure what was going on, but he slept for the better part of 7 hours. Of course, I didn't sleep that entire time because he's sort of restless and makes baby sounds and kicks a lot while he sleeps. But hopefully this is a step in the right direction.

Unless Heidi tells me otherwise, and she probably will, I think this gets everyone up to date. Check back in a day or so, and go to the pictures when you can...

Friday PM - We're getting established with our new routine. I spend more of the weekdays with Adam, mixing in a few days of work, while Heidi stays at home with Grant during those times. On Friday we switch places with some subtle variations. Our sitters allow us to get some work in between staying with the boys. It's all rather chaotic, but somehow we manage to make it work.

This morning at the hospital was particularly interesting. The doctors make morning "rounds", which means a group of doctors, medical students, and other interested parties walk to each patient's room and discuss the progress of that patient as well as the plan for the upcoming day. Usually, the attending physician leads the discussion and engages the fellows (a doctor who is getting specialized training), residents, and medical students in a discussion about the patient. Dr. Fernando Stein is the attending physician and the head doctor of Adam's unit, and he is the one who leads the rounds during the week. Today he brought the entire group into the room, which is something I hadn't seen prior to today. In short, it was very enjoyable and quite informative. Dr. Stein is a great doctor and believes strongly that family members are an important part of the health care team. He went as far as to tell the group that they were mistaken if they thought a patient could be cured without family involvement. With all of the cynicism about the medical field that you hear, this was a welcome change.

Meanwhile, as this was going on, a photographer was busily taking pictures. Dr. Stein asked if I minded if the photographer took pictures of Adam and me for a book that he was compiling. Of course I had no objections, and I hope to have copies of the pictures posted as soon as I get them from the photographer.

With all of this excitement, I almost forgot to give the latest update on Adam's progress. His heart rhythm has settled enough so that they don't have to give the "smurf" medication, but will continue with two of the older but tried-and-true medications, propanolol and digoxin. As far as the cardiologists are concerned, he is nearly ready to come home. Dr. Stein, who is the primary care doctor, wants to work on the other issues but is preparing us to take him home, possibly within two to four weeks. It's easy to see that Adam is feeling better, as his eyes look sharper every day, his skin color is good, and he's showing an interest in drinking from a bottle. His favorite place is lying on his side while on a bed pillow in someone's lap. To see the progress he has made since first being born is unbelievable.

Lastly, I forgot to post an amusing story from last Sunday. While I was at work I got a call from Heidi asking me if I needed anything from Conroe. For those blog-readers not familiar with Texas geography, Conroe is about 15 miles north of our home in The Woodlands/Spring area. It seems she was talking on the cell phone to her brother Tyler and missed the exit. Actually she had driven past Conroe and was almost to the next town, Willis. At least she kept the car on the road, and didn't quite make it to Dallas.

On that note, I'll close this post. Thanks for reading...

Thursday AM - Yesterday was one of those days that we were at the center of all of the activity. TCH is one stop-shopping for whatever ails your child, and we had several of the shops visiting us yesterday. First, the biggest and best news of all: Adam does NOT have cystic fibrosis. I can't remember if I had mentioned this possibility in earlier posts or not, but it has been a concern since he was 2 days old. He has had some of the symptoms of CF, but they had not been able to completely test and rule it out until yesterday. This is right up there with his heart surgery being succesful. We were so happy to hear the news last night that we wouldn't allow ourselves to believe it for about an hour. It's about time he had a run of good news.

The short-term issue that we're dealing with is his heart medication. Many times one medication solves one problem, then creates another. Such is the case with Adam, and we are now on our third medication. It's not a matter of "if" but "when" they find the right combination and dosage. Interesting note: one of the side effects of the new medication is blue skin from overexposure to the sun or the "smurf" effect. It's tempting to test it, but we won't be doing any sunbathing any time soon.

Over the next week or so, he will be in "basic training" for bottle feeding. He's had mixed results so far but the occupational therapists are very optimistic. Training has been suspended for today as he will be getting a PIC line, which is sort of an advanced IV line. Sedation is required when they put it in, but this will be better for him than the regular IV's he's been getting. He won't have to be stuck every day, as was the case when he was blowing the IV's. The endocrinologists (gland doctors) are also getting more involved and will be doing tests to check his pituitary, thyroid, and adrenal glands. Add the gastroenterologists along with the urologists and you have our game plan for the next 2 - 4 weeks.

Grant had his monthly doctor's visit on Tuesday. It looks like Heidi could work at the "guess your weight" booth at the carnival. She correctly guessed 15 lbs. Actually he's 15lbs 4oz and doing very well.

It's time to close. Adam is calling and wants to be held as soon as I can get the nurse to change his dirty diaper. Check back soon...

Tuesday AM - Live via WIFI in the TCH food court. Adam was transferred to the Progressive Care Unit yesterday afternoon, a sign that he is slowly but surely recovering. There are several issues to resolve, but the main thing now is his feeding. He's stuck in a cycle where he gets up to a certain amount of food, then his stomach swells from excess gas. The feeding is then stopped for up to 24 hrs until the swelling goes down, then the feeding is slowly started again. One suspect is the pain medication, from which they are slowly trying to wean him. Regardless, this is getting everyone's attention now that he has had his heart surgery.

We are fortunate to have two angels who have followed Adam from The Woman's Hospital. Two of his ICU nurses, D'anna (hope I'm spelling that right) and Victoria, are visiting and playing with him at TCH when Heidi and I can't be there. He has taken a real liking to them, and it is a great comfort to us to know that they are visiting him. This is a great example of what I mentioned before about these special people who work and care for these kids. I can't say enough about how special they are.

I spent last night with Adam at the hospital, and Heidi stayed home with Grant. We hate being split like this, but it seems that we're getting close to where everyone can be home. I don't know how Heidi's night went, but Adam was pretty good all things considered. He slept at 45 minute to 2 hour intervals, and I did the same. He only stirred when his pacifier came out, and it was fairly easy to get him back to sleep.

The battery on the computer is running low, so it's time to end this post and get back upstairs. I hope to catch up on getting the pictures online, but it may take a few days or so. Check back in a day or two for the latest...

Friday PM - Last night I stopped by the hospital and was able to hold Adam for about an hour. He was fairly agitated when I got there but quickly settled down when I put him in my lap. It's tough putting him back to bed when he relaxes and looks so content, but a wood rocking chair doesn't make a very comfortable bed.

Today was better than yesterday. So far, there is no sign of bacteria in the blood cultures, and he was calm the entire time I was there so I was able to harass the hospital staff. Actually I spoke at length with the doctors and two of the nurse administrators about where he's going next. They are ready to transfer him to the Progressive Care Unit, which is where we wanted him, but there were no beds available today. Monday will likely be the day he transfers. I also spoke to the therapists and child life specialists who work with him on bottle feeding, movement, and general entertainment. He should be worn out by the time they get through with him.

If I don't post before Monday, that means nothing significant has happened. Here's hoping for a quiet, uneventful, weekend...

Friday PM - We thought that Adam would be transferred to a lower level of care today, but he was running a low-grade fever, so they kept him in ICU until they can determine what infection he has, if any. So far, no viral infections were found. Now, they are waiting for a blood culture to see if there are any bacterial infections. He's started on antibiotics just to be sure. The double-edged sword strikes again: Improvement means a lower level of care; to keep a higher level of care means his overall condition isn't where it should be.

This next part is difficult to explain, so bear with me and don't jump to conclusions until the end of the paragraph. A small leak was detected around his VSD repair, but it's a small leak. The way this was explained to me is that the leak is minimal and doesn't really affect the blood flow like the large one did. The surgeons used stitches to repair the large leak, but they were working in an area where electric impulses control the heartbeat. There is a trade off between having enough stitches vs. having too many that impair the electrical impulses and thus creating the need for a pacemaker. If a leak this small had been initially detected when he was born, it likely would have not required surgical repair. They will continue to monitor him just as they would had this been the size of the first finding. No treatment or correction is required.

Otherwise, feeding is still an issue. For some reason he's only able to take formula at a very slow rate. We hope to hear something from the G/I specialists, but for now he's taking his formula at a slow, steady rate. Earlier today, there was a coughing/gagging episode but no more of those since then. He's receiving respiratory therapy once every 8 hours, inhaling a medication through a mask placed just above his face.

Overall, we could have had a better day, but it could have been a lot worse. I was able to hold him for about a half an hour before all the doctors arrived for morning rounds. The rest of the time was spent gathering information from the same doctors, and rubbing Adam's bald little head at the same time. He enjoys this and it keeps him calm.

Tomorrow's another day, check back sometime then...

Wednesday PM - When I finished the post from Monday I went back to Adam's room and he was having a conniption from (you guessed it), the CPAP. Later that evening they removed the CPAP and placed him on a cannuala, the same as he had when he was tranferred. Since then he has been resting comfortably, except for a couple of times when they fed him. His stomach gets upset if they feed him at a normal rate of consumption, so they have slowed his feeding to be spread over an hour or two. We've asked the gastrointestinal specialist to get involved and hopefully that's happening today.

We burrowed in at home last night. The news looked and sounded bad but we only saw a few icicles hanging from trees and bushes. I know there were several accidents around the city, but this afternoon is above freezing (barely) and we should be finished with that nonsense. Plans are for me to go back to the hospital today and spend the night at RMH, then to work tomorrow. I believe we're getting close to Adam's transfer out of ICU to who-knows-where. Stay tuned, I'll post as soon as I can...

Monday PM - Posting from the ICU waiting room, I've stepped away from Adam's bed as he is peacefully sleeping. Just as I would expect, he's proven me wrong and has, at least for the time being, accepted the CPAP. Earlier this afternoon he was awake and alert, the first time we've seen him this way since before his surgery. Every day or so they take out one more line or tube which signals another small step toward recovery. His nurse today said he may be transferred out of ICU by this weekend. For us this is great news, but our concerns about the amount of attention and care he gets come back since the step-down in levels also is a step-down in the amount of direct attention he is given. But we're starting to learn the system and are already telling anyone who will listen that we want and need the higher level of care. The system has been around longer than we have, but we'll see how it goes.

We decided that Heidi would take home duty with Grant tonight and that I will stay with Adam at the hospital until it's time to leave. Then back to RMH for a good night's sleep. Hope everyone is warm and safe wherever you are. Until tomorrow...

Monday AM - Not surprisingly, I haven't posted since Friday. Going back to work, going to the hospital, and trying to eat and sleep in between takes a lot of time. There wasn't much change since the last post until this morning, when the doctors discontinued the ventilator. Adam is now on CPAP (continuous positive air pressure) which is a device taped to his face and blows a continuous stream of air into his lungs. All breathing efforts are on his own. This is a "promotion" of sorts, but he has been on one of these devices before. To say that he despises the CPAP with all of his being is an understatement. The last time he was on it was at Woman's Hospital, and one doctor told us he was doing backflips trying to get it off. I expect no less of him this time around. Eventually (probably sooner than they think) they will go to the nasal cannula to give supplemental oxygen.

One other issue we're concerned about is his abdomen being distended. They're watching it closely but it looks pretty big. X-rays don't show anything serious, just a lot of gas. We've asked for the G/I specialist to take a look and hope to hear something soon.

For those of you not in Houston, we're having our once-a-decade ice storm starting tonight. Between the tree limbs freezing, falling on power lines, cutting power, and the VERY experienced ice driving of the Houstonians, we're expecting a grand old time to be had by all. If I don't get a post done before Wednesday, I'll do it as soon as possible. Staying warm and dry...

Friday PM 8:50 - Posting from home tonight and going back to work tomorrow. Heidi is staying at RMH and will go to the hospital early (well, early for her) tomorrow morning. The doctors make their rounds between 8 and 9 AM and that's the best time to get our questions answered. I spoke to one of the cardiologists today and he said a lot of things and gave us a lot of information, but the one thing he said that got my attention more so than anything else was that Adam is doing better than he thought would be the case at this point in his recovery. We have to keep reminding ourselves that the road is long and can take many turns, as we have experienced the last 4-plus months and as everyone who's been reading this blog from the beginning knows. But for today we will take the news and be happy and thankful. Some highlights from today: They have lowered his oxygen percentage to 35; chest tubes used to drain excess fluid were removed. He's still heavily sedated, but is starting to make efforts to breathe on his own. They hope to remove the breathing tube by early next week, and move him to a less-critical care unit shortly thereafter. He is also taking formula through his nasogastric tube, and has not been on IV nourishment. It's hard to see him so heavily sedated, but this is part of the recovery process and another step to getting him home. Our fighter is still going strong.

Since I haven't mentioned Grant in the last few days, I think he needs some press as well. Heidi weighed him today and he's up to 15 lbs, or so say the bathroom scales (I still haven't figured out how she got him to stand on them). We're reading to him and he has a favorite book that I first read when I was about 5 years old. Go Dog Go is the name of the book and after 45 years it's still a good read for the younger set. I'm behind on taking pictures and getting them uploaded, but I'll try to make up for it in the next week or so. Still reading and enjoying all of your comments and emails, they really give us a boost. Next post (hopefully) tomorrow...

Thursday PM 6:45 - This post is coming to you live from the hospital library. They have internet access available, so I'm taking advantage of the shift change currently taking place in the ICU. Parents have to leave for an hour twice a day while the nurses give report to their replacements, once at 6:45 AM and again same time in the PM. Obviously only the PM report affects us. Heidi has gone home to cover the time from the day sitter to the night sitter, and to hopefully get some rest. We've been fortunate enough to get a room at the Ronald McDonald House just down the street from the hospital. I've never been a great fan of McDonald's food (pancakes and coffee are the exception) but this place is great, and a worthwhile charity if anyone is looking to donate time or $. We got a good night's rest there last night, and looking forward to another one tonight.

Adam's progress is right on schedule. He's still on a ventilator, but is starting to make his own breathing attempts. All of his vital signs are stable. His biggest issue for now is pain management. He's been on morphine for quite a while due to the previous surgeries and procedures, and has now developed a considereable tolerance. There are many other medications, but finding the right ones and the right dose is a full-time job for his nurse. As with the nurses at Woman's Hospital, the Cardiovascular ICU nurses here are top notch. He's had two so far (AM and PM) and both are keepers. It takes a special kind of person to do this job. There is one nurse for one patient, which is a relief to both of us. With one exception, the doctors caring for him in the CVICU are also great.

Tomorrow is another step forward, and we're counting on his continued improvement. With the support we've received from everyone, our confidence is high that he will do well. No promises, but I will do my best to make one post per day as long as he's in CVICU.

I've read all of your emails and comments on the blog, and appreciate each and every one. Check by tomorrow...

Wednesday PM - 2:45 PM. Adam is out of surgery and is stable. There were no problems encountered and the doctor said everything went according to plan. The VSD was large but was sewn and patched. Based on the size of the VSD the doctor thinks that there was significant fluid in Adam's lungs, which should start to diminish. He also had an ASD (atrial septal defect) which was repaired. The pulmonary valve was extended with some of Adam's own tissue, but the doctor said that this by itself probably would not have required him to have surgery, at least at this time.

We get to see him in about an hour. He will likely have a lot of tubes and lines, but we're just happy, thankful, and relieved that he is through this part. It's been pins and needles for us, and we appreciate the thoughts and prayers that everyone has sent on Adam's behalf. The next few hours, then days, then weeks are going to be critical but we've cleared a major hurdle. Stay with us...

Wednesday PM - 12:05. The surgery is going as expected with 2 to 3 hours to go. Adam is on the bypass machine and all vital signs are stable. The doctor is repairing the ventricular hole as I enter this post, and still has the pulmonary valve to attend to before finishing.

Wednesday AM - The pace of events over the last 48 hours has been overwhelming, to put it mildly. Actually it goes back to Friday Jan 5 when we were notified by the doctors at The Woman's Hospital that Adam was ready to be transferred. There was a lot of discussion as to which unit at Texas Children's Hospital (TCH) he would go to. We held off on the transfer until Monday. He was sent to a floor where they monitor his heart and breathing rate, oxygen level, etc, but the nursing care is not as intensive as an ICU. Advantages: we had our own room and were able to stay with him and hold him as long as we wanted. There was a comfortable pullout bed that made staying there tolerable. We never had to leave for nursing reports or any other reason. Heidi was jealous because the room was bigger and nicer than the one she had . Disadvantages: The nursing care was somewhat inconsistent, ranging from nurses who were just as attentive and hands-on as those at Woman's Hospital to nurses who only checked by for vital signs and/or when the call button was pushed. In all fairness, this level is geared more to the latter nursing care, but we obviously prefer and appreciate the former.

Heidi spent the night at the hospital with Adam while Grant and I were bachelors at home. I think I got a few hours of sleep, but Heidi was not so lucky. By Tuesday she was exhausted and was having to talk with several doctors regarding several different issues. This is one thing that we are having difficulty adusting to at TCH. At Woman's there was one team of doctors who handled almost everything, with the occasional cardiac or G/I specialist stopping by to consult. Here, there seems to be a different doctor stopping by every hour around the clock to discuss a different issue. Sometimes we're not sure who's running the show. But we keep reminding ourselves that this is the best children's hospital in the south, and one of the best in the world. We'll put up with bureaucratic procedures and redtape if it means getting Adam the best care possible. It's been a tough adjustment and we're still coping, but we'll manage. Oops, back to what happened. On Tuesday, Heidi was told that the surgery had been moved from this Friday to this Wednesday (today), and that a different surgeon would be operating. This caused some concern on our part as we had been told that the other surgeon was THE MAN to do the job. Our concern was short-lived when we found out that the new surgeon is the director of the cardiovascular surgery department, and that THE MAN had actually trained under him.

On Tuesday night, Heidi and I switched places, but we had our night nurse stay with Grant so that she could catch up on her sleep. I actually slept 4 - 5 hours at the hospital as we had a great nurse who was very hands-on with Adam. He was a good boy, and slept quite a bit. The surgery team came for him at 8:15. The anesthesiologist spent several minutes going over what they would be doing and answering my questions. We all then left for the surgery unit. I can tell you that watching him go into the surgery area was one of the hardest things I've ever done. So now, it's 10:55 and I'm in a special area reserved for families waiting for their children in surgery. There is a large open area, and individual private rooms off the main area. The cardiovascular staff is ubelievably helpful and supportive. I'm getting a report every 60 - 90 minutes on his progress. So far, so good. They are putting him on a bypass machine and at 10:50 they were sizing the tubing to connect to the major blood vessels. His vital signs are good, and the anesthesia was uneventful.

I will do my very best to keep this updated, as I know it's the major source of information for many people. Please be patient, and keep all of us in your thoughts and prayers. Adam is a tough little fighter, and this is his biggest fight yet.

Monday PM - The New Year is starting off right. Adam was taken off the ventilator, and is continuing to recover from the pneumonia. He was very excited to see us today, and to be able to sit in our laps while we held him. He didn't sleep the entire time we were there. We're expecting him to be transferred to Texas Children's within the next week.

Not to be outdone, Grant is outgrowing his first round of clothes. He is a very happy, very communicative baby. He loves to lie on his changing table and have someone talk to him. He smiles and tries to talk back.

TuesdayAM - My first double post. I had the 2nd half of the night watch (after 3AM) with Grant. He slept for just over 4 hours, which meant I slept most of the time. During the day he has a habit of falling asleep half way through his bottle. As I'm typing this at 9:25 he's sleeping in my lap, half of his bottle sitting in front of us.

We're going to Texas Children's Hospital for a tour today. It's quite different from The Woman's Hospital (different=big). Woman's has 4 floors and one main building, TCH has at least 20 floors and 2 wings. But it's one of the best children's hospitals in the world and Adam will be in good hands. Our only regret about leaving Woman's is saying goodbye to the doctors, nurses and staff who have got us this far.

Gotta run...