January 21st U of M Visit

Our last visit to U of M consisted of four appointments. First we did the routine ultrasound in the Prenatal Unit, this ultrasound detected nothing new. However, we did get great 3-D pics and think she may look a lot like Lily! Next we meet with the OBGYN completing a routine visit. We set up a birth plan and it looks like we have an induction date of March 15th. We think we have settled on the name Riley, Riley Faith Rule!

The next stop was a visit with the Pediatric Cardiovascular Surgeon, Dr. Ohye, who explained the surgery to us in great detail. This appointment lasted about an hour and a half and was very difficult. Eric and I are very comfortable with the surgeon and like him a lot. He has an amazing passion for what he does and gave us a very real picture of what we will be going through with these surgeries. He indicated that the first surgery will take place between day 2 and day 7 of life. Directly at birth Riley will be taken to the NICU to start medications and possibly a ventilator. She will be on IV fluids, so I will need to start pumping right away! The surgery itself will take between 4 and 6 hours and will require up 12 people contributing to the process. We should be able to see her within the first hour and half after surgery. The details of the actual surgery are quite complicated, but to simplify as best as I can the Dr. will be putting in a stint to redirect blood flow. There is so much more to the surgery and his explanations of the process (including the process of future surgeries), but for now that is the way simplest way to explain it.

The surgeon was very real with us in discussing her recovery. He said for every step forward, she may take two steps back. Each day is a hurdle she must get over and his advice was to try to look a the whole picture of her recovery and not the day to day. Dr. Oyhe prepared us for her physical appearance after surgery. Because open-heart surgery is such a trauma for the body, she will look quite sick at first. He explained that setbacks are normal and may include infections, fluid in the lungs, etc... The standard recovery is 2 weeks in the NICU and 2-3 weeks on the regular floor. They will not send babies home until they are breathing on their own, feeding on their own (may need a tube to help at first), or until they are TOTALLY comfortable with their progress.

Once Riley is home she will be like any other baby and can be cared for like normal. Although Eric said the other kids aren't going to be allowed to touch her, hahaha! The first surgery is called the Norwood and is the most risky, with a success rate of 85%. Her second and third surgeries (Fontain) have a success rate of 98% and will take place between 4 and 6 months and around 18 months.

The last appointment of the day was another lengthy Fetal Echo Cardiogram, which proved no new developments. Because the left ventricle is somewhat developed and is pumping some blood through it, the surgeon is confident that this will help Riley. He said there is no proven research that supports this, but he truly believes babies develop better having some blood flow through the left side. Riley will actually not be using the left side of her heart at all after her surgeries. The blood is redirected to pump other ways. Kids with this condition can usually function physically up to 85-95% as well as normal children. The surgeon said she will not be an Olympic Marathon Runner, however, she will be able to be as active as any normal child!!!

U of M is the #1 Center in the nation for these surgeries! So these doctors are the best you can get! Thank you God for Ann Arbor being here in Michigan and only an hour an 15 minutes away! There are roughly 1,000 cases a year in the United States. These surgeries were developed in the early 80's and have come a long way in their development. Because research is so important to learn how to improve this process, we will be open to contribute in any way we can. It was explained to us that contributing to any research is not an obligation but a choice. And we feel that if we can contribute any medical information from Riley's experience to help those in the future we are absolutely willing!

Our next visit to U of M is at the end of February and will include a full tour of the NICU. At that point we will be able to be put on a waiting list for the Medical Inn, which is the hotel within the hospital. We are praying we will be able to get 1 of the 30 rooms available for the time we need it!

We are confident that Riley's surgeries will be successful and she will be home with us in a few short months. What we are praying for is the strength to endure this whole process and the road that lies ahead. Please pray for her recovery, that the surgery will provide the proper blood flow needed, and that her body will respond well to the surgery.

Please pray Proverbs 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding; In all your ways acknowledge him, and he will make your paths straight."