Overall, we think this week went well as far as appointments go. Our appointment in Madison was very interesting (they had me go into a special room that seriously looked and felt like a spaceship). I could not tell you exactly what they were doing except that they were trying to get a more in depth look at her arrhythmia. We are still waiting on the results.
Our 2nd "weekly" fetal echo with Dr. Shanti on Tuesday went well. Our baby girl is still fighting and her heart/heart rate continues to be stable at 40-ish beats/minute.
We had our "official" second opinion with Dr. Rios on Wednesday (he did an echo). He agrees with Dr. Shanti's diagnosis. We really appreciate his honesty and optimism. He said to us that he understands we want another "percentage" of her chances of making it and he said he doesn't like to do that. He said "We are not worried about how other babies have done compared to your baby. We care about your baby girl and how she is doing. I'm an optimistic guy and more often than not these kids to well. Before you know it she will be riding a bike and kicking the dog." We loved that (mostly because it sounds so much like Jack and poor Rufus!) We explained that we do understand the complexity and severity of her heart defects but really, truly appreciate his optimism and positivity :)
So at this point we are not sure where we will have her surgery. We just mailed our records to Michigan and Stanford and are waiting to hear back. We heard back from the Children's Hospital in Boston and they said that they have not yet seen this combination of defects and that the mortality rate with this combination of defects is high, but agree with Dr. Shanti, that, if she makes it they are able to operate.
After talking to Dr. Rios on Wednesday, we realized that we can be done now with getting opinions/statistics on the current state of her heart. We know it's not good and it is a very rare defect. Now we just want to be sure that find a surgeon who has a a lot of experience with working with babies with this complex of a heart condition. We will hopefully have all of the information we need in the next few weeks to make an informed decision. I feel like the last big decision Dan and I made together was what style of fence we wanted or a particular paint color. I would never have imagined the two of us making such a big and important decision. This is especially hard for me since making decisions is not really my strong suit :)
Thank you again for all of your sweet messages. Dan and I cannot express how much we truly appreciate your prayers and support :)
xoxo
Alli, Dan, Jack and Rufus, too!
1 comment:
Keep fighting little girl! The Meng's can't wait to meet you!
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