The "how is his heart?" question (10 monthday)

This afternoon Wren and I got together with some babies and parents from our Listening-mothers Infant group. It was lovely to see the babies so big and social. At the group I was asked a question which has come up a lot of late. "So, how is his heart doing?" I have been asked on 2 phone calls and by 4 other people in the past 24 hours.

This question is difficult to answer. Wren's heart is not entirely normal. He still has aortic stenosis (mild), a bicuspid aortic valve, a mild coarctation of the aortic arch and the most serious concern - a left ventricular outflow tract obstruction (LVOT obstruction). His left ventricle has been mildly thickened since before he was born and remains pretty constant at a slight thickening.

The great news is that he seems to cope very well with these obstructions. If his stamina is reduced we have not seen it yet and we are unaware of any imminent problems like high blood pressure, regurgitation, problems with the valve or strain on his left ventricle.

However, we are not sure what these obstructions will mean in the long term. We have not been told that they will go away or become insignificant. We have not been told that they will require intervention. All conversations are along the lines of "if he shows the need we will do X and Y".

So far, he seems to be in the "chronic" state with his CHD - meaning he is pretty stable and will need monitoring every 6 months or so unless something changes. This is pretty hard to live with when you think about it but since Wren looks so well, is thriving developmentally and is clearly happy and 'healthy' we do not worry much day to day.

IF he did need surgery it would probably be open heart surgery to address the LVOT which can damage the aortic valve if turbulence is severe. Our cardiologist said they would be cautious about suggesting that surgery because it has a significant risk of causing scar tissue at the site of the repair which leads to further complications. We hope Wren does not need the repair.

Thank you for your concern, those who asked!

New games
Wren turned 10 months by stealth yesterday. He continues to surprise me with new games and cleverness. Today he continued his "I feed you, you feed me" routine and tried to feed me water from a cup in the bath. I had just shown him how to hold a little plastic cup and drink from it and he had taken a series of gulps while holding it himself. I showed him the sign "drink" and opened my mouth. He brought the (now empty) cup to me and pushed it to my mouth with a huge smile.

Bathing together
This is the second night we have bathed together and its fun. He likes to stand in the bath (probably because it is deep) and splashing makes him laugh. He is fascinated by the stream of water falling from a bottle and makes serious attempts to hold it. He also laughs at the gulping noise of air exiting an empty bottle pushed underwater. He squeals and laughs.

The Later Bedtime Attempt
Tonight, Wren went to bed at 8pm. This is part of the plan to get him to sleep past 5.30am but also in anticipation of daylight saving causing his current sleep habits to go awry. I really cannot go back to the days of 4.30am wakenings. It is just not going to happen. We all ate dinner together in a strange parody of a Top Chef challenge - my intention for us all to eat the same thing failed and we all ate different meals with similar ingredients:

1) Me: bunch of Kale with red pasta sauce, vegies and chicken
2) Wren: bits of Kale, vegies, chicken.
3) Frost: vegies, red pasta sauce, pasta, vegie meat balls.
4) Josh: pasta, vegies, chicken, alfredo/mushroom sauce.