July 1997

July 1 PM: The rest of the world has superhero types like Superman, Wonder Woman, Batman, we have EaterBoy. This kid has discovered the wonder of food. I cannot believe his new appetite! He has had two record eating days in a row. It's great to see him feeling so much better. He is also starting to discover what a handy tool his thumb is for putting in his mouth. We usually have to help just a bit, but once it's in there, he's on his own...

We had a little scare on Sunday morning. Two diapers in a row had a little blood showing in his stool. We spent another 5 hours in emergency checking out many of the types of things that may cause this. We were able to at least rule out all the really nasty reasons, but as of today, we're still not sure why this happened. It seems to have mostly cleared itself up, but we're still watching.

He is up to 10 lbs 2 oz now, and is getting a little taller. He's reaching out towards objects as well, but still cannot get a hold of things yet. He sent me off to work with a great warm feeling today, we had a good smiling session after the morning feeding!! It's funny how easily parents are amused by their kids ;-)

July 4 AM: Not too much excitement for the last few days (fortunately). His appetite is a bit down, perhaps it was a combo of a growth spurt and his diarea that made him so hungry before. He is still eating quite well though. We're not seeing very much blood anymore either. We are waiting for the new problem though - he has managed to get back to the hospital every vacation (except for perhaps arbor day ;-) since he has been born. We're wondering what Independence Day has in store for us.

Dad even gave Mom the night off for "ladies movie night" a couple days ago. Tyler was great! He hung out with his girlfriend Megan and the men (well... just Megan's dad). He spent most of his time sleeping, which I guess is fun for him! Mom had a good time.

July 8 PM: No news is good news. Tyler has been doing GREAT at home. He's eating 450-550 cc each day (about 16-17 oz). He is also smiling even more, he must be feeling much better. A few little milestones: he is holding his head up for 10-20 seconds while on his stomach. He is swinging his hand at toys and reaching towards his stuffed animals to touch them. His eyes follow you around the room while turning his head. Perhaps small things, but it makes a parent proud ;-). He also still has the deepest blue eyes anyone has ever seen! What a knockout....

We'll find out later today how his weight is doing. His body looks larger, but his face is starting to lose the roundness. He is getting facial features (well, sortof). He still has his one-sided dimple though... but only when he smiles.

July 9th AM: He's up to 10 lbs 7 oz! He gave our pediatrician a hard time again, but not as bad as normal. I forgot to mention how proud we were that he did not have to go into the hospital on a holiday! What a good kid ;-) He also ate over 600 cc yesterday, even with the appointment.

July 13 AM: It didn't used to be so difficult to figure out what he wanted. Before, he had only two different cries. They were:

• "I've just woken up, and I'm a little hungry. Could you perhaps pick me up and feed me"

• "I would like to be burped or changed please"

Now he has come up with several distinct ways to cry with meaning...

• "I am suddenly starving and I cannot believe you do not have a bottle in my mouth"

• "I am suddenly annoyed that my diaper is dirty, change me NOW"

• "I am suddenly extreamly bored with my mobile/teddy bear/rattle/hanging gym/swing/bouncer seat/nap, change this for me"

• "I am suddenly way too tired go to sleep, so I think I will cry"

• "I've just shoved my finger into my eye for the fourth time, please have it stopped"

• "I want to see you run around to try to figure out why I am crying just for the fun of it"

Of course you realize, we happily accept all of these responsibilities. Ninety percent of the time these cries are preceded by a twenty minute bout of smiling and cooing like an angel, which is what he spends most of his time doing anyway. He is still the sweetest baby we have EVER seen!!

We had a quick trip this weekend to the San Diego Wild Animal Park! We all had a great time. Well, actually he slept in his stroller most of the time and I built up a nice sweat pushing him up the hills. He did see a few of the animals though. He really seems to like to be outside. All the noises, smells and sights are very interesting for him.

July 13 AM (ten minutes later): Isn't it silly how parents think they have unlocked the mystery of the cry of their baby?

July 15 PM: I don't think our Pediatrician needs to get a complex about Tyler screaming every time she see's him, he just 'lost it' at his cardiology appointment today. He had three appointments today:

• The Pediatrician: He gained one ounce a day since his last weighing. He's up to 10 lbs 14 oz! We were proud. His blood count was great.

• A sedated Cardiac Echo: The gave him a most wonderful drug ;-) It knocked him out for about 2 hours. We watched as Fred (the Echo technician) took us on a tour of Tyler's heart, aorta, and general cardiac blood system with his 'magic wand.' The images of his heart were fascinating. (a Cardiac Echo is very similar to a sonigram, only way better)

• The Cardiologist: This was the easiest appointment, Tyler was still under. The Doctor likes what he saw from the echo! We will meet with him during the middle of August and schedule the second operation (eeek), probably for the end of August (eek again). His blood flow around the heart is great, so we won't have to have a Cardiac Cath before the next operation.

We also had a quick visit with some of our friends at NICU. We always like to see them again, especially when we are NOT admitting Tyler. Both Mom and baby are sleeping their day off right now.. What a nice picture that is ;-)

July 21 PM: Just when we thought we were going to coast up to the second operation in late August. During his lower GI last Thursday, they determined the blood in his stool might be due to an allergy to dairy (cow) products. Some may be filtering into Donna's breast milk! Since Donna loves many dairy products, this will be a problem. The start of the test is to eliminate all breast milk for him, and to have her stop eating any dairy (no pizza, no milk, no anything). He started on a milk-free formula Thursday night. That was AWFUL. He hated it, and would scream as loud as possible as soon as the bottle got near him. I don't blame him, this stuff smelled like old gym shoes. Eventually, he gave up and began to eat. Over the weekend, he could not get enough of the stuff!!! He is eating more of the formula than he used to eat breast milk. He also seems to sleep a little longer.

Today, we will try to give him some fresh breast milk that should not have any dairy in it (since Mom has been good all weekend ;-). We hope he will take to it.

Tyler got to go to the zoo this weekend for a few hours. While he was awake, he had a great time. I think his favorite thing was the sky-fari ride. We sat near it during a dinner break, and he stared at the cars for 20 minutes. He was a good kid.

He's up to 11 lbs 2 oz as of Friday, so he is gaining about an ounce a day again. You can really see it in his belly and thighs. He is also starting to sleep a bit longer at a time at night. What a relief ;-) I think he is starting to get a little ticklish too...

July 26 AM: So far so good with the new allergy theory. Donna is not having a great time not being able to eat any dairy, but Tyler seems to be responding well. We have also cut out the rice cereal we used to mix in his milk, so we're still not positive what the true reason might be... He had another record eating day yesterday, 730cc during the 24 hours! We were so proud ;-). He has his moments when he is not the happiest person in the world, but in a way it's nice to see that he has enough 'extra' energy to scream! He still sleeps about 4 hours straight at night, sometimes 5 so we're not sleeping through the night yet.

He is becoming more and more interactive each day. He smiled with me about 45 minutes this morning. Dad's like that kind of stuff ;-). I'm not sure, but it sounded like he laughed one time.

He came out to his first softball game yesterday. Dad it playing on a Friday night league now, and mom brought Tyler and Megan (with her parents too) to watch! It was a good thing we won that game with fans like this! He only 'lost it' one time, and that was after the game. Mom took him for a lap around the field and he was just fine.

Another appointment next Monday, we're looking forward to seeing his weight. As good as he has been eating, we expect a nice gain.

One item occurred to us this week. We've been acting as though he was a normal kid, and I firmly believe that is what we should (and need to) do. I read a column in the paper about what dad's do during the life of their children, including sporting events, barbeque's for scout troops, camping, general playing etc. It made me sad to think what sort of life this kid is going to have. How long will it be? Will he experience everything that he should? Will he be able to go on camping trips or hikes? Perhaps these are things every parent worries about. I guess you just do what you can...