Shirley is doing very well so far and we are very thankful for this time to rest and be close to our daughter! The nurses call it the "honeymoon" because post surgery everything gets more intense. We have been able to hold Shirley for hours and hours the past two days and although she is all wired up it is still an amazing experience. Once Shirley is out of surgery we won't be able to hold her for a few days (3-5). The chest won't be closed until they are confident that fluids won't build up around the heart. This requires drainage tubes to be placed allowing these fluids to runoff freely. The "honeymoon" will be over. It is, however, a very real step towards recovery and being discharged!
Shirley has needed little intervention in her first few days of life but that will change very soon. She is still not able to digest anything and is being given liquid nutrients directly into her blood. Throughout our stay they have been monitoring her respiration rate as a sign to identify distress or just being over-worked. This is because the pressure chang in her lungs after birth. While in the womb Shirley's lung pressure was high and blood flow minimal because the lungs don't have a role in oxygenating the body. Once she is born, however, the pressure drops and blood begins to fill the lungs as they work to feed the heart, fresh, oxygenated blood. Because of Shirley's heart anatomy the lungs can be stressed due to having increased blood flow beyond the normal ranges. The lungs provide an easy, low pressure, environment for blood to flow relative to the higher pressure environment of the body. Recall Shirley has one major trunk that's doing the job of both the aorta and pulmonary vessels that would provide blood to the body and the lungs respectively. All that to say her respiration rate has increased significantly and may begin to stress the heart. In order to mitigate that they are going to start Lasix. This is not a great concern and something that almost every child with truncus deals with because the nature of the deformation.This drug will also help to ensure adequate oxygenated blood is getting to other vital organs such as the kidneys.
Brianna is recovering very well and ditched the wheelchair today and has walked, albeit rather slowly, all over the hospital. Three hours in the OR post birth will do that! She is so tough and doesn't feel the need to take the oxycodone they prescribed for pain management. Recovering whilst dealing with the inevitable stress of hospital life is difficult but Brianna doesn't seem to be fazed!
Some people have asked about providing meals for us but it can be difficult to get up to Seattle just to drop off a meal. During this time before surgery we are keeping visitors at arms length in order to make sure Shirley is as healthy as possible going into surgery. That being said, there is a way to purchase "nutrition gift cards" for use at the cafeteria. It's kind of a strange process but you can call a number to purchase gift cards on our behalf. Wish I could provide more information. Here it is: 206-987-2094
Ok, ok, here are some more pictures.
-Joseph
