*there's a huge tiny diaper

This picture is from yesterday.
I finally got a shot of how high Will's diaper comes up in the back.

If pants that are too short are called "high waters", there should be a name for a diaper that comes up to the shoulder blades. Well, I guess there is already a name: "too big".

The cushioned thing he lies in with hearts on it is called a Snuggle Up. When you get to be a big boy like Will you move up to a bigger size Snuggle Up. The straps across him are to help him feel more secure. If he were still in the womb he would be surrounded on all sides. Those straps and the tall edge at his feet give him something to push against so it feels like home.

Now for today's picture:

He's back on the cpap!

We also thought his hand is awfully cute clinging to the Snuggle Up strap.
Maybe he's thinking "Come on! We need this cpap to work baby!"

Today an ENT was supposed to examine Will for suspected Vocal Cord Paralysis. But before they got to it it was decided that he had been doing so well for so long it was unnecessary. He is doing well on the cpap so far and we hope he can step down to the nasal cannula again soon.

We also got to talk to a cardiologist this evening. He explained more about Tetralogy of Fallot (TOF) and what the repair will involve. He is hopeful that Will will only need one open heart surgery as an infant. He does, however, expect him to need another surgery in adolescence or early adulthood. By then they will hopefully have perfected something less invasive than open heart surgery for the remaining repairs. He really put our mind at ease about the success of the surgery and how active we can expect Will to be.

The best news was that his is considered to be less severe than many cases. I've learned that TOF can be diagnosed before birth. I had several ultrasounds since there were concerns about Will's growth and was frustrated that this wasn't noticed sooner. Learning that it was difficult if not impossible to see since it isn't a severe case is reassuring. When I have more time, I plan to try to share some of the information we have on TOF. In the meantime we were told about this site with a video that shows the condition in detail. The cardiologist said that someone on the staff was an artist before their career in medicine so they can make really helpful pictures to demonstrate the differences in the way Will's heart works.

~Jody