Eliana had an appt with the cardiologist today. She had another echocardiogram done today. The first was done shortly after birth and transmitted to the cardiologist. He wanted a better look at her heart. He had good news for us after the echo - one of the problems that was thought to be present in her heart is not!!! She does not have the AV canal defect (no separation between the canal on the right and left side of her heart). Instead she does have these separated. This will mean a less complicated surgery and hopefully less chance of problems in this area down the road.
She does still have two holes in her heart that will require surgery. One in the upper chambers and a larger one in the lower chambers. Both holes are between the two chambers. I have a really great picture from the cardiologist that helps to explain this - but I know that isn't all that helpful to those that are reading here. Maybe I can find a link.
The bad news we received today is that she has not gained weight in the last week. They are asking us to add formula to the breastmilk she receives in order to boost the calorie content for her. She has to work extra hard due to the holes in her heart which burns more calories. She is also still really sleepy and at times has a hard time staying awake for feedings.
At this point in regards to her heart we are just waiting to see how she does. If things go badly in regards to weight gain, she may have the surgery sooner - as early as 2 months. The cardiologist expected that the surgery will probably take place between 3 and 6 months. We are just in a waiting mode right now.
Things are expected to get hard for her sometime in the next month (between 4 and 7 weeks perhaps). She will gradually begin to go into heart failure. I told him that this sounded awful! He assured me that it sounded worse than it was and that it would be gradual. Also that it needed to happen before she could have the surgery. We hope to know at least a week, possibly two, in advance of when the surgery will take place.
Please keep praying for all of us. We are so encouraged by the notes and prayers of so many on our behalf!!! I know it has helped to carry us these last couple of weeks. Here are some specific requests.
Pray for health for our family. For the last two weeks every member of our family - except Eliana and I - have been sick. My dh has been out since last Friday! It's been really hard.
Please pray for me as I try to pump milk for Eliana as I know that this is really good for her. Also for her feeding that she would get the calories she needs to be able to grow.
Pray also for our family as this adjustment has been a hard one for all of - especially with all of the sickness.
We are thankful for you dear friends!
Week In Review 2020: Week 1
1 day ago