10:38pm We had our care conference late Thursday afternoon. This is a conference that many families have on a weekly or bi-weekly basis when their baby is in the NICU. It is good bc you have all the specialists in the room including everyone from the neonatologist and cardiologist to a social worker and a chaplain. It helps with coordination of care, helps get all your questions answered in one sitting, and allows the specialists to discuss their plan for your baby while all are present.
For us there were about 10 specialists in the room and we appreciated all the support. The cardiologist did a lot of the talking early on and he reported that unfortunately the echocardiogram showed that Avelyn's heart has gotten worse since Monday. Her numbers on her monitor looked better so the beta blocker is helping with that, but the echo shows the right side of her heart continues to be more thickened.--They described her heart at this point as being "irreversible." Also as they try to continue to treat her heart, they feel the lungs and the extra fluid/edema throughout Avelyn's little body will continue to get worse.--And if they try to treat the lungs and decrease the fluid, they feel her heart will continue to get even worse. They described it as being "stuck between a rock and a hard place." They are going to continue to treat her, but they do not have a positive outlook; they do not feel she is going to make it. We are remaining faithful and asking God for a miracle, because at this point it sounds like the medical professionals have done all they know how to do. Also they feel like Avelyn is suffering and we don't want this. We want her precious little body to be healed. We pray God continues to hold her in His arms and comfort her. We are relying on this right now.
Please be praying for a miracle. But also be praying that our sweet little Avelyn finds peace and comfort, whatever that may mean. Thank you all for everything. Love and hugs to each of u...
For us there were about 10 specialists in the room and we appreciated all the support. The cardiologist did a lot of the talking early on and he reported that unfortunately the echocardiogram showed that Avelyn's heart has gotten worse since Monday. Her numbers on her monitor looked better so the beta blocker is helping with that, but the echo shows the right side of her heart continues to be more thickened.--They described her heart at this point as being "irreversible." Also as they try to continue to treat her heart, they feel the lungs and the extra fluid/edema throughout Avelyn's little body will continue to get worse.--And if they try to treat the lungs and decrease the fluid, they feel her heart will continue to get even worse. They described it as being "stuck between a rock and a hard place." They are going to continue to treat her, but they do not have a positive outlook; they do not feel she is going to make it. We are remaining faithful and asking God for a miracle, because at this point it sounds like the medical professionals have done all they know how to do. Also they feel like Avelyn is suffering and we don't want this. We want her precious little body to be healed. We pray God continues to hold her in His arms and comfort her. We are relying on this right now.
Please be praying for a miracle. But also be praying that our sweet little Avelyn finds peace and comfort, whatever that may mean. Thank you all for everything. Love and hugs to each of u...
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