Monday, July 25, 2011

Second Appointment at CHOP

This is it. Things will move fast now. Our next trip to Philadelphia will be an extended stay for the birth of our son. We learned a lot of new information today that will help prepare us for that trip.

August 22nd is the date of Brandi's next appointment. Hard to imagine we will not be coming home after that appointment as they will start monitoring Brandi weekly. Time will stop for us until we know the outcome of the events to come. It is very likely that we will miss Caleb's birthday, Thanksgiving, Christmas and even usher in the new year in Philadelphia.

The sonogram today went very well. Jordan is exactly the weight he should be for this stage of pregnancy. His lung-to-head ratio is 1.4, which means that his lung volume has increased as he has gotten bigger. The observed to expected lung area was better this time around too: .5 this time as compared to .3 last time. This ratio compares Jordan's lung development with normal development of a fetus without CDH. We were concerned that they could not locate the left-lung again (they had trouble locating this lung last time). They explained that the left-lung is being pushed up into the atrium of the left side of the chest - meaning that it's so high up the bones of the shoulder and chest block it from being detected on the sonogram. This is not uncommon for a fetus with CDH.

Our doctor today said that their success rate at CHOP for children with CDH is around 90%. Unfortunately, for children with the liver "up", that succes rate drops to around 40-50%. Jordan's liver is "up". The liver is a solid mass of tissue as compared to the intestines, which are soft, flexible tissue. CDH is dangerous because the lungs are restricted by the organs around them. The liver "up" is not a good indicator.

We greatly enjoyed the company of our financial advisors. They lightened the atmosphere as they worked hard to find a way to help us financially. We are excited to say that it appears we will qualify for Charity Care. Basically, the hospital will put a limit on our out-of-pocket medical expenses of around $1,700. Plus, they were able to include both Jordan and Brandi in this plan - one limit for both of them. They are planning to finalize our enrollment at our next appointment. Our other main expenses will be travel and the typical expenses being away from home. We greatly appreciate everyone who has supported our family, both in prayer and finances. We are looking forward to the garage sale this Friday.

Housing is one of the major pieces not determined. The Ronald McDonald house is completely booked up. They may have an opening for us in August; they may not. We are going to look into getting on a waiting list for a host family (families who have dedicated a place to stay for other families who are facing medical hardship).

Given the circumstances, we feel that things are going as well as they can. Families facing hardship have to make decisions and face trials that aren't easy. One of the toughest obstacles in our minds is facing so much time away from Caleb. We are a close family and the thought of leaving him behind is difficult. We know that we don't have a choice. Our time and focus needs to be on the pregnancy and Jordan. It will be well worth it if we get to bring a little brother home.

We, including Caleb, pray for Jordan everday. For those who desire to pray for Jordan, we are praying that his lungs will continue to grow and that he will be ready to fight. We are praying for the medical team as they will be providing special treatment in those first precious moments, months and years of his life. We believe God has our son in His hands regardless of the outcome. All things considered, we want to bring our son home more than anything in the world. We will share more on this later as we discuss a book that has helped us prepare for Jordan's birth.

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