June 1997

June 4 AM: The guy is a little piggy!! He seems to be gaining an average of an ounce a day. This is great news. The next big procedure (a hemi-Fontan) should happen at about 13 lbs, he is at 9 lbs 5 oz now. We're looking at about 4 months old now (3 months away... eeek). Dr Cocalis (his Cardiologist) says he is looking good for this schedule. We are VERY much looking forward to this next big operation. He will be a much stronger kid after it.

We had a great weekend with him. He actually went shopping with mom. They both seemed to enjoy it quite a bit. He's still not too excited about cold, air conditioned, loud places, but we're getting better prepared for this. Fortunately, he looks good in hats ;-). It's important to make sure we always have enough food for him as well... When he gets hungry, there is not much of a warning. We even tried another restaurant yesterday with much success.

He is scheduled for his balloon angioplasty. That should occur on July 16th. No one seems too worried about this procedure, so we're not either. It will involve a night stay, probably back with his friends at NICU. Speaking of which, he got to see a few of them yesterday after his appointment. He was so excited to see them he fell asleep ;-). We'll keep bringing him by, he misses them!!

June 9 AM: I now know why parents make up a bedtime! It's really for themselves, not the kid. What a change of lifestyle. We used to just be getting started with our evening at 9:00, now we are only counting the minutes until we can get to sleep ;-). Not really, but this sleep thing is rather amazing.

He's still on a great weight gaining schedule. Another three ounces at the last weighing on Friday. He's up to 9 lbs 8 oz. Still an ounce a day. He is not eating as much as he used to, only about 380 cc per day now, but he seems to sleep a lot better. He can go up to about 4 hours at night. His best feedings are still at night. I've been able to wake him up at say 3:00, take him downstairs, warm up a bottle, feed and burp him and get him back to bed by 3:20. The ultimate business lunch, no messing around, just eat and get back to sleep.

We got bold again. We took him out to a nice dinner at a not too busy time. As long as he has his little hat, he doesn't seem to mind being in an air conditioned restaurant. We did find another small advantage with his hat. While sitting in his infant seat, he often moves his head back and forth a few times as he stretches. This usually causes his hat to slump down over his eyes. Then he closes his eyes and goes to sleep ;-). It seems mean, but he doesn't seem to mind. He peacefully slept through the entire dinner.

He continues to smile more and more when he sees us. I think we're all getting more used to each other. We don't even notice anything 'special' about him. He's just a regular kid to us. The 'extra' care we need to take with him is second nature. He is still not liking breast feeding though. That's a bit of a bummer, but I guess that means dad gets to feed more often ;-).

June 10 PM: Another pediatrician appointment today, he did not gain as much weight as he has been, but still a gain. Only two more ounces over the weekend. He looked great to them though. I think he is finally giving Dr Battey a complex though, she wants to see him before the nurses at the next appointment. It seem by the time he has been weighed, had his temp taken, and talked to the nurse he is ready to leave. That's usually when she walks in and he starts to scream. Poor Dr Battey. She is so nice, but he just doesn't seem to want to stay any longer ;-).

I found out I am not going to be here over the weekend. My first Father's Day and I will be out of town :( I'm rather bummed, but I think we'll try to celebrate on Friday instead. I have a seminar I need to go to from Sunday thru Wed in Ohio. Donna will certainly have her hands full for those days. Good thing she is so tough!! They may visit grandma and grandpa for a night or two while I'm gone. Only one Dr appointment during that time as well.

June 11 PM: We may be crazy, but we did it. Last night, Tyler went to his first baseball game!!! Some of our wealthy friends (Greg and Kim) had free work tickets to a private skybox at the Padre game. There were only 8 neighbors in the whole box, and they all knew the rules with Tyler, so we felt comfortable with this. His girlfriend Megan was there too. He had a great time ;-). He slept, ate, cheered, and cuddled as much as he could. It was nice for us to feel like a family on an outing. He actually slept rather well through the cheering. Tony Gwynn hit three doubles, one a game saving one, so the crowd was VERY happy. I'm afraid he'll be spoiled in the future, we may not be able to get on the press level for his next game ;-). Unfortunately, we forgot to bring our camera (I know, I know), so we'll have to remember this one ourselves...

June 14 PM: It's amazing how quickly things can change. Yesterday morning (Friday the 13th), Tyler was doing great. He was eating well, smiling like normal, and generally being happy that it was Friday. Early in the afternoon, Tyler started to not feel very well. He actually had been showing fussy signs off and on for a day or so, but he really began to feel bad. After an aggressive vomiting session, he decided to stop eating. Each time we tried to feed him he would take just a little, then shove the bottle out of his mouth, refusing to open up again. After another rather violent vomiting session, we began to get a bit more nervous. He didn't have a fever, but was not looking very good. At 8:30 PM, we had worried enough. The Pediatrician on call told us we could go to the Emergency room at Children's Hospital.

They ran blood tests, took an xray, EKG, poked and prodded him, but could not find anything definitive. At about 2:00 AM we decided to let him sleep the rest of the night and see how he was in the morning. He had actually been smiling off and on at the ER, but still was not interested in food. After an hour of sleep, he cried and woke up Donna. She tried to feed him again, but he still was not interested. He began to scream worse than ever. We decided to take him back again, this time directly to NICU if we could. The Cardiologist on call (Dr Perry) gave us the OK, and off we went.

His condition was worse than everyone thought. He is now back on a ventilator, has three IV lines (including one in his head!) and is under 'single patient care' (one nurse dedicated to him at all times). He had become very dehydrated, and was acidotic. As we would have expected, they were able to stabilize him rather quickly. As nice as it was to see Beth and Dr Knight (Dr Dudell is on vacation), it was sadly reminiscent of a previous experience we would rather not have gone through again. We're looking into the cause of his lack of appetite and vomiting now - viral infection, cold - but aren't sure why. The first priority is to get him stabilized and calm. He is mostly unconscious right now, so even with all his tubes he is comfortable. They expect to keep him there for at least a few days for testing and observation.

I did have to postpone my trip this weekend. It looks like I will get to see him for a while on Father's Day!

June 17 AM: Still not much good news. His blood pressure has risen to dangerous levels. The narrowing of his distal aorta is contributing to the blood pressure problem, as well as adding to his difficulty with his virus. They have decided to push up the balloon angioplasty to today! Apparently, he is in good enough shape to perform this procedure. Unfortunately, I am in Ohio right now. I'll be calling Donna throughout the day to get updates, but we're both a bit nervous..

June 17 PM (2:00 PDT): He is currently in the operating room. I spoke with the cardiologist this morning. This is NOT a low risk operation with his current situation. Everyone is a little worried. I have decided to cut my conference short. I will be going home tonight. Grandma and Grandpa are coming down from Sequoia as well. Donna says that he does not look very good right now - he is rather swollen and is coughing. He should recover quite nicely after it is done, it's just the worry about the risk of this procedure...

June 18 AM: Tyler is OK!!! He made it through this operation quite well. He looked quite a bit better since I had last seen him, his swelling was way down, his breathing was relaxed, his heart rate was better and his blood pressure was down. The gradient blood pressure (the difference between his upper and lower body pressures) is back to only a 5 to 10 point difference. At his worst reading, his gradient was 50 points (not good). He is still intubated, mostly unconscious and his rash due do his virus is all over his belly now.

It was nice to see him again. He had a fathers day card waiting for me ;-). I was lucky enough to call from the airport in Cincinnati at just the right time. He had just come out of the operating room and looked great. I did not have to worry the entire flight. Speaking of flights, I need to compliment Delta Airlines for the way they handled all of my flight changes and emergencies. Not only were they very prompt and professional, but caring and always wished the best for Tyler. It's nice to find a large company still willing to care...

Tyler will not be coming home until early next week. They will want to watch him get used to his new blood dynamics, as well as make sure he is over his virus (or whatever it is). All looks good for now...

June 19 AM: Last night did not go as great as we had all planned, but not too bad. They were trying to tube feed him, and steadily increase his amount every third feeding. He was not able to digest that much. He is also still a bit 'wet' in his lungs. They may not be able to extubate him as quickly as they were thinking. All he really needs is time to get better now. We won't be able to rush this time...

June 23 PM: Well, he's still in the hospital. He seems to be feeling much better, but has a rather bad sounding cough. He doesn't seem to have a large appetite yet either. On the plus side though, he has been spending most of his time smiling at everyone who gets near him. It's one of the greatest things I have seen in my life. He smiles even stronger than he ever did. His whole body starts to wiggle, and he opens his mouth as wide as he can. After that, he seems to have to turn his head away as if to say, "If I smile any more than I am, I'll explode!!" What a flirt...

We may try to get his immunizations taken care of now as well. It would be nice for him to be supervised by the NICU staff during these. With as many shots, IV's, medicines, etc. that he has had, he may not even notice ;-) We can only hope.

He will probably come home sometime during the middle of this week. We miss him.

June 24 AM: It looks like today is the day for immunizations. I hope it doesn't bother him too much! He had another rather good day yesterday. He had been losing just a little weight over the last few days, but he was slightly up last night. All that smiling must wear him out.

June 25 AM: The immunizations went great, he screamed a bit during the shots, but doesn't seem to have any ill aftereffects. He also had an upper GI to check his reflux - he has it! We did find a new favorite food for him though. He loved the barium milkshake they fed him for the upper GI! Of course, he wouldn't eat it until they sent someone back to get his favorite nipple.. I think that lug of barium in his stomach added a bit to his weight too, he was up 150 g last night ;-)

June 26 AM: Today should be the day! We just got off the phone with NICU, they are planning on a morning release. He seems to be eating great lately, and his head IV is out. There was a little scare yesterday with a slightly irregular heartbeat. He experiences Bradycardia (a lowering of the heartrate) and misses a P-wave beat occasionally when he is in a deep sleep. These don't seem to be a problem, but we get to worry about yet another thing when he is home. He also had a Cat-Scan yesterday. He passed with flying colors. He's had more things done to him than I probably ever will! We also heard another theory about his most recent illness, he may not have had a virus. It may have been just the narrowing in his aorta causing all the problems. Unfortunately, we may never know, but we like this idea better...

June 28 AM: He's home again!!! We quickly got back into our old routine with him - no time to do anything but hang out with him ;-). He is a new person. He seems to feel much better and has started to eat more at a feeding. He even remembered how to breastfeed!! We were so proud. We're able to sleep a bit more since he is eating better, however he does not like to go to sleep as quickly. I guess he's not at tired as he used to be, and he is still VERY social. He would rather stare at you than finish his bottle. Often we have to look away from him so we don't catch his eyes, it seems to help him concentrate better...