Another Day with Anne Marie
After surgery on Thursday we were breathing a huge sigh of relief, and the doctors continue to tell us how amazed they are that Anne Marie came through surgery so well. Yesterday one of the doctors who helps with Anne Marie (but isn't one of her main doctors) said, "Everyone is talking about what a strong little girl she is. We are all amazed at how well she did." God willing, one day Anne Marie will be able to tell everyone how God brought her through surgery. We continue to thank God for preserving her life so far and now we are gearing up for what's next.
She is still doing well, but continues to have bleeding. It's a situation that the doctors continue to watch as they give her blood products. And she still has the "unknown issue" with her heart. It has shifted almost back to the center of her chest (praise God), but the cardiologist still can't get a good view from the echocardiogram to see exactly what's going on. They will have to wait until they turn down the ECMO flow and allow more of her blood to flow through her heart to see what it is doing. Until they are able to wean her from ECMO a little bit they won't know much more. We are praying that her heart is full-sized and simply heretofore hasn't had much room. They are also still watching her fluid output. She hasn't had much urine output; they would like to see more so they can know her kidneys are functioning normally.
The weaning from ECMO is also another big hurdle. She has been on it now for 16 days, and the longer a baby is on ECMO the more chances there are for complications. The surgeons are very anxious to have her weaned so that they can control the bleeding and close her belly (though Brandon says having an intestine hanging out makes for a great Halloween costume). The neonatologists would also like her weaned but would like to do it in baby steps.
Again, there are just so many factors involved, but those are the big ones right now. For those who would pray for Anne Marie, please pray
She is still doing well, but continues to have bleeding. It's a situation that the doctors continue to watch as they give her blood products. And she still has the "unknown issue" with her heart. It has shifted almost back to the center of her chest (praise God), but the cardiologist still can't get a good view from the echocardiogram to see exactly what's going on. They will have to wait until they turn down the ECMO flow and allow more of her blood to flow through her heart to see what it is doing. Until they are able to wean her from ECMO a little bit they won't know much more. We are praying that her heart is full-sized and simply heretofore hasn't had much room. They are also still watching her fluid output. She hasn't had much urine output; they would like to see more so they can know her kidneys are functioning normally.
The weaning from ECMO is also another big hurdle. She has been on it now for 16 days, and the longer a baby is on ECMO the more chances there are for complications. The surgeons are very anxious to have her weaned so that they can control the bleeding and close her belly (though Brandon says having an intestine hanging out makes for a great Halloween costume). The neonatologists would also like her weaned but would like to do it in baby steps.
Again, there are just so many factors involved, but those are the big ones right now. For those who would pray for Anne Marie, please pray
- That Christ would cause Anne Marie's bleeding to stop, just as He did for the woman with the issue of blood;
- That her heart would function normally and that her pulmonary hypertension would improve;
- That she would be able to urinate; and
- That her lungs would continue to expand and that she would be able to be weaned off ECMO.
It is easy to become discouraged after talking to the doctors about all the various issues involved and all the hurdles yet to clear. They are very compassionate, but they don't sugarcoat things. And today I was checking another blog of parents who have a CDH baby, only to find out that he died last night after a 30-day battle. So discouragement can come, even with the joy of a successful surgery. But today at lunch Brandon showed me something that Randy Alcorn tweeted today:
God loves a great story. Before we fault him for plot twists we don't like, let's remember that Jesus has written the story in his own blood.
We are grateful that God knows the beginning and end of our story, and we trust Him for all the plot twists in between. And we are grateful for the many people who continue to pray for us.
