Week 28 Update

It’s been a minute since I’ve updated everyone! I’ll try to hit the salient points.

1. We had several appointments last Thursday in Madison. After an echo, the pediatric cardiologist informed us that she was able to see the pulmonary veins, which she was unable to visualize at the last echo at 21 weeks. Additionally, Emanuela has no significant cardiac anomalies! This is a huge answer to prayer! This doesn’t definitively rule out cardiac issues as certain abnormalities may present after birth, but it is the best news we can hear about her heart at this point. Praise the Lord!
2. We met with several pediatric nephrologists regionally via telemedicine visits this week. Out of the centers we have consulted with, Stanford and the University of Minnesota appear to have the most experience in dialyzing babies for an extended period of time. Experience is an important buffer against errors; small errors in dialysis treatment for babies can lead to infections and other complications. Additionally, the University of Minnesota and Stanford have a machine that could be used to give her hemodialysis should a complication arise from peritoneal dialysis. From our understanding, the other centers we are considering do not currently have that equipment.
3. It has become evident in our many consultations with a variety of physicians that Emanuela will receive her dialysis treatment in the location where she is delivered. She will likely be delivered where we are receiving the amnioinfusions, as labor tends to be a spontaneous process. Please pray that we are able to locate a provider near Stanford or the University of Minnesota to administer the amnioinfusions. We are very thankful for the wonderful provider we have been working with in Omaha, but we would like to transition to a provider that is close to a preferred center for postnatal care (Palo Alto or Minneapolis).
4. The appeals process for insurance is currently underway. So far, our amnioinfusion treatment coverage has been denied. Additionally, we anticipate issues with insurance surrounding delivery and postnatal care as we will very likely be out of state for these pieces of the health care puzzle. We are thankful that we have some members of Congress supporting our case, in addition to a few physicians that we are working with. Please pray for Ezra and I as we build a case for coverage. Also please pray for those reviewing our case, that their hearts will be softened and that they will feel compelled to grant insurance coverage.
5. Emanuela is measuring about 2 weeks behind her gestational age. We are thankful that she continues to grow from week to week, but she is significantly behind her in-utero peers. This could complicate dialysis as weight matters more than gestational age for catheter placement. Please pray that she continues to grow and that her rate of growth dramatically increases. To aid in this goal, I have stopped my nearly 6 year commitment to veganism. A research study found an association between maternal plant-based diets and low infant birth weight. For our baby, every gram matters, so I will eat meat and cheese if that is what it takes for her to gain weight. This dietary change was a big shift for me. I am thankful that I have peace about this decision and feel it is what is best for Emanuela at this time.
6. We would like to thank everyone who is following our case and praying for Emanuela. Ezra and I have already seen many answers to prayer along this journey; we believe in the power of our God. Please continue to pray for us and share our prayer requests with prayerful folks in your social circles.
7. As an aside, please pray for me as I prepare for a medical school exam next week. I have had many things to tend to outside of school, so this may be a challenging exam for me.

A lot has happened in the last few weeks; we are thankful that God continues to provide. I’d like to close this post with a passage that was recently shared with me:

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” ~Matthew 11:28-30

Stay safe & God bless.

-R