August 1997

August 6 PM: Sorry it's been so long for this update. Things could not have been better. We're having so much fun with the little guy. He is up to 11 lbs 14 oz now, and continues to eat well. He is still one of the most interactive babies we have ever seen. He loves to look at people and smile. He will smile now without you even saying anything. All he has to do is see you look his way.

We do have news though. The next operation has been scheduled!!!! The plan is for September 3rd at 6:00 am. It should last 3 to 5 hours, then a 5 to 10 day recovery at the hospital. We are both nervous and excited about this. No one wants to see their child go through an open chest operation, but the outcome of this particular procedure is so positive. After this operation, his heart will beat almost half as hard as it is right now. He will be a new kid (although, we really like the one we have now ;-). He should start gaining weight even faster, and will become much more capable to handle colds etc. We will hopefully be able to take him off of some of his medications as well! That will certainly be nice.

He is sleeping more and more. He gave us almost 6 hours straight last night! How nice of him... Usually, he gets only 4 to 5 straight at night.

His hair seems to be coming in a little more now as well. He still has a little bit of a friar tuck line on the back of his head, but his forehead is starting to really show hair. It seems to be a little lighter red than the stuff it is replacing.

The milk free breast milk/formula thing seems to be working as well. It looks like he does have an allergy to cows milk. Donna is still not eating any dairy (bummer). Formula is a little more expensive than we had hoped, especially compared to the free stuff Donna can make. We may be able to try soy formulas in a while, but some infants with a cow milk allergy are also allergic to soy products. We'll try that later.

More soon...

August 8th PM: This has been a different sort of day for me. I just got back from donating blood for my son's next operation. It's a strange feeling knowing he will be using a part of me for his recovery. Donna has the satisfaction of knowing he is able to feed from her body, but now I have a different sort of contribution. I will have to go back another time to give a couple more units. Unfortunately, our blood types are not identical, so they will not be able to use all of my blood. They are going to separate out the components that he will be able to use though.

He continues to do very well. His latest objective seems to be to turn himself over. Apparently, he gets very frustrated when he cannot make it over, but he is getting close. We've had to give him a little assist each time so far. We had our first "I can't believe he is growing up so fast" episode. We now have purchased a case of size two diapers! He is really not completely ready for them yet, but it's close enough. We also had our first "I cannot believe how expensive this formula is" episode. Kids sure can cost a lot ;-)

Monday, we have our first consultation with the Cardiac Surgeon (Dr Mainwaring!!). It's getting closer and closer to the big day. Eeek

August 14th PM: Two big appointments this week, the Cardiac Surgeon on Monday, and the Cardiologist on Tuesday. Tyler was mostly an angel for both of them!! We were both stunned. He did not do his usual screaming fit at the doctors office (well, except that one time ;-). He has passed all tests, so it is still a 'go' for the Sept 3 operation date. We are currently lining up all the family for blood donation. It looks like we will have enough... It is surprising how much he may need. The Cardiac Surgeon gave us a 1-2% risk for this operation for Tyler. That was about the best news we could have heard. He expects him to stay in the hospital for about 6 days. After that, his Cardiologist said "You can take him anywhere you would take any infant." That was also great news.

He continues to grow and prosper. He has come up with 3 or 4 regular 'words' he likes to say. We have no idea what they mean, other that "I love mommy and daddy a bunch." We're both pretty sure that is what he is saying ;-). He is up to 12 lbs 4 oz as of Tuesday. It looks as though the dairy thing has solved his blood problem, great for him but still a bummer for Donna. We did find out that In-and-Out-Burger is ok for her!!! This is a good thing. He is starting to play more and more as well. He even likes to be tickled, even though he has not really laughed yet. Since he is eating even more, he seems to sleep longer and longer. Wed night, he let us sleep 6 hours straight! Like most parents, we were a little afraid to walk into his room in the morning, afraid of what we might see. He was just kicking back, sleeping peacefully. I wish we could sleep that well....

August 29th AM: Wow, I cannot believe it's been this long since my last entry. We're having so much fun with him, it's hard to take the time out. I'll try to recap some of the last few weeks highlights:

• He has had several Dr. appointments in preparation of his surgery. He has passed all of the tests, so it's still a 'go.'

• He is up to 13 lbs!!

• He continues to love to interact with people and be in the same room as all the activity. He spends most of his time smiling.

• He has a favorite word now. When we say it (loose interpretation of the word say, it sounds more like a gurgle ;-), we can always get him to smile.

• Donna is as skinny as a rail since she cannot eat much ;-). She continues to avoid dairy to help his allergic reaction. There still is a bit of blood in his stool, so we're switching to formula for the weekend and up to the surgery.

• It looks like we will have enough blood to cover his surgery, thanks to the many that volunteered.

• Two record eating days in a row, an 855 and 860 cc. We're still keeping track...

I have finally scanned more pictures. You can view some of them on this page, but I've added a couple to the July page. We've also been having him sleep in his crib in his own room for a little while. We're able to sleep a little better ourselves. We're also hoping this will help him during his next hospital stay. We will be able to spend the nights there with him, but we will not be able to hold him for at least a few days. Typically, he wakes up in a better mood than the rest of us in the morning. We will walk in and see him smiling at his stuffed animals, as well as playing with his rattle. What a great kid...

September 3rd at 6:00 Pacific time is still the scheduled operation. We will be taking him through several pre-operation tests on the 2nd (x-rays, ekg etc.). We are not anticpating any problems there...