where there's a will: August 2010

I just realized I haven't shared about Will's recent follow up with his cardiologist. Surgery was 4 months ago. When we saw this doctor a month after surgery we were expecting him to discontinue the Lasix prescription Will had been taking. This keeps fluid off the heart. Will still has this retracting or pulling around his rib cage when he breathes. It made sense before heart surgery but no one expected it to stick around. It doesn't look bad, it just looks like he is having to work hard to breathe. So instead of stopping the Lasix one month after surgery, the doctor wanted Will to keep taking it and come back to be seen in 3 months. I'm not entirely sure how the medicine is related. It's amazing the things I don't ask when in the midst of information overload.

The appointment went great! His EKG was fine and the doctor was pleased. No more Lasix. But the retracting is still there. I also asked the pediatrician about it. Both doctors have declared that it isn't a problem and Will's history lends itself to this kind of thing. He never had a serious lung diagnosis - I'm guessing they referred to his need for a ventilator in those early days as respiratory distress.

I'm not worried about it. As a matter of fact Chris and I haven't even really talked about it. I've just been thinking about it this morning and am wondering if it will always be there, and if so what it will look like. Will he one day sit with friends around a swimming pool, with his shirt off and the faint reminder of a heart surgery scar...and will it look like he's panting? I'm certain it will be unnoticeable by then but these are the things that go through our minds.

Will's sats were an awesome 99. That was pretty great. The doctor says there are 2 small residual holes in his heart. One between the top chambers and one between the lower. The lower one was left on purpose during surgery. They were closing a larger hole (the VSD or ventricle septal defect) and didn't want to get too close to the heart's electrical system and cause damage. I think he said the top one might close on its own. Even if they both stay the same, they are "trivial" in size. Awesome! So far I think the only thing besides Will's scar that will remind us of his CHD is that he can still turn a little blue when he gets cold. It happened once at the end of a bath but it's pretty preventable.

Speaking of baths, here is Will taking one with his killer whale.

Our cardiologist is pretty conservative and he wouldn't promise that Will won't need another heart surgery in 15 years or so. I think some of the other doctors would tell he us that he's in the clear.

Sights around the house this week:

I just unpacked this from our move in May.

Inside I found this. I completely forgot about this binder.
Its got all our NICU discharge instructions and lots of info on TOF.

I also don't need all those sheets of paper to describe what TOF actually is anymore. Here is the oversimplified, shortest version that is the easiest to tell: TOF is made up of 4 defects. The most important 2 to mention are that Will's heart had a hole between two chambers that allowed unoxgenated or blue blood to mix with oxgenated red blood. So the blood that was sent from his heart back out to his body didn't have enough oxygen in it. And the ventricle it had to go through was too small. So his heart had a hard time getting blood out and the blood didn't have enough oxygen in it anyway. Hence the term "Blue Baby". And since Will's case was fairly mild he wasn't very blue. How's that for short and simple? I can summarize pretty decently. :)

RECENTLY ADDED:

These are from the super useful site HeartBabyHome! I included their image of a normal heart as well as a heart with TOF. The 4 defects of TOF are in yellow in the lower picture. If nothing else about these pictures makes sense then at least take note of the colors...notice how the top picture has only bright blue and bright red as the background color of the atriums and ventricles. In the TOF picture, the lower chambers (or ventricles) have a purple color. This shows how those 2 different types of blood mix when there is a hole (called a VSD).

The 2 other parts of TOF:

1) when the muscle of the right ventricle becomes too thick (called hypertrophy). This is from working extra hard to get the blood out of the narrow valve.
2) when the aorta is in a slightly different spot. This one has always been more difficult for me to understand because it's hard to depict it in a picture. Here is what the NHLBI says about the overriding aorta in TOF - In a healthy heart, the aorta is attached to the left ventricle. In TOF, the aorta is between the left and right ventricles. This is relevant because it makes it easier for the oxygen-poor blood to get sent back out to the body.

*****

I read this blog from time to time. It's a young adult that does a really good job of uniting families affected by CHDs and educating people about what it's like to have one. I think I'm drawn to it because Will can't talk yet and hearing from someone older who has survived something similar is nice. I was really glad I came upon this info about scars. This is the part I want to remember, written by Lauren, the blog's author:

"let your children know that their scars are special badges of honor....Tell them it's ok to show off their scars and share their story. If they don't want to show their scars, let them know that's ok, but also let them know they shouldn't be ashamed of them either. It may take time for them to figure out how they want to deal with their scars, but let them know that whatever they want to do is ok."

I was also glad I read this line from a mom of two heart babies:

"As parents, we have tried to NEVER to comment if scars are showing, so as not to make them self-conscious, or to give them any reason to feel as if they should hide them."

That is something I could see myself doing without realizing.

Here's the last pic from this week.

This is where the pacifiers have been hiding. Under the crib!

We have so many because they were thrown away at the hospital any time they fell on the floor. So the nurses told us to take them home and put them in the dishwasher if we wanted. That was really useful until they started to collect in this hiding place!

Here's what it looks like hooked up to the G tube:

The square of gauze is probably temporary. The skin around the tube is continuously trying to heal and might not need anything to absorb excess granulation tissue after awhile. We're told sometimes it's just an ongoing thing that needs padding.

This is what is more commonly seen at feeding time...the extension tube coming out of the bottom of a buttoned onesie...he's less likely to grab it this way:

The bag of milk and the pump on the pole:

This close up is just to show off the new curl over his ear!

There is sometimes a lot of curl on top too. He had a bath not long before this feeding so it has been brushed straight here.

Newest milestone: sitting up to play!

New bib! Thanks to my mother for bringing a smile to our (and his!) face with this:

We are still going to see various doctors but not nearly as often! We recently had Will's NICU follow-up eye appointment. He is a bit farsighted and has a slight astigmatism. Unfortunately we have to go back in one year to check on that. The good news is that there is an 83% chance that it will correct itself! Otherwise he would need glasses. For now we will consider it one more preemie concern checked off the list!