The Long Road

Well, we will not be going to the cath lab tomorrow. After an echo done this morning, the cardiologist in the PICU and the surgeon feel that they did not see any decline in the function (if anything a slight improvement) and feel that the risks outweigh the benefits of doing the cath lab. We still may need to visit the cath lab down the road.

They are also not worried about the narrowing that was noticed on the echo last Thursday. His blood work done this morning did show that his heart is still working harder than the doctors would prefer. So they have increased the amount of milrinone he is taking. This will take 24 hours for us to see how he responds to it.

Over the weekend, Henry was not taking to his bottle like he was earlier.  There are a few things that may be causing this, but the most likely is that his heart is working so hard his body just doesn't have the energy to take food in and digest it properly. Henry would also cry when trying to give him a bottle or his even his pacifier - and it was not a "I'm hungry" cry.  The doctors had increase his calories over the weekend, which we have now cut back to see if that was part of it. Babies usually don't like the taste of the formula we are currently on, and it being fortified doesn't make it taste any better. We have also had to witness our son throwing up. Anyone that knows me (Paige) knows that I don't handle the sound of gagging very well. I would like to report I am still holding up well and haven't gotten sick since before Henry was born.

This week will be spent seeing how Henry responds to the milrinone, as well as figure out his feeding.  Hopefully, as the higher dosage of milrinone helps Henry, he will start feeling better and want to take his bottle again. 

Finally, Henry just needs to grow into the shunt that was put into him in his surgery.   The shunt is 3.5 mm in diameter, and is still a little too big for him, but anything smaller Henry would have outgrown too fast. The shunt allows blood pumped through the reconstructed aorta to flow back through to the pulmonary veins and into the lungs. In comparison to his own vessels, that 3.5 mm tube is the path of least resistance. The milrinone will help the heart squeeze and also reduce the resistance in his own blood vessels, so that more blood will go to his body than his lungs. Unfortunately, he cannot leave the PICU on milrinone. Henry needs to grow so that the shunt does not seem so big, and he can switch to oral medications. So we will not be going home anytime soon. 

[February 7th-14th is Congenital Heart Defect awareness week. For those interested, Jamberry is selling nails and will donate $2 to the American Heart Association.  Please go to  http://alyssay.jamberrynails.net/party/default.aspx?uid=2a3e35eb-8fd4-4387-bc53-3fb3e51622ec

The nails that are providing donations to the American Heart Association are at http://alyssay.jamberrynails.net/product/heart-health-awareness.]