Blog | Savannah's Heart

So much planning is going on – some for things we expected, others for things we never thought we’d be doing….

Knowing that Savannah will need so much help when she arrives and will likely be at Riley for a significant amount of time, we’ve had to start planning differently for her arrival. We’ve looked at new doctors, we’ve looked at procedures and medical diagnosis information. It’s a lot to wrap our heads around, but it’s all so necessary now. I know there will likely be more research and planning involved in the next several weeks, possibly second opinions and involving other hospitals, just to make sure the very best treatment is what we choose. We love the cardiologist we met at Riley, but with a heart as complex as Savannah’s, the more medical minds we have looking at her, the better we will feel. We would appreciate any and all prayers while we try to make the best decisions for Savannah.

We’re also trying to plan for more practical things after she arrives….I’m planning on staying with her at Riley until she comes home. That means I need to find a place to stay until she is ready to come home. We’ve looked at the Ronald McDonald house, which seems promising if there’s room when we need it. It also means Ryan will be doing a lot of driving to come down and see us, as he’ll have to go back to work before she is ready to come home. I will also have to eat while I’m down there and figure out how to replace the income from my business while we’re there. I’m planning to put some special jewelry pieces in my shop with the goal of having each one do something “specific” – one necklace may help us afford one night at the Ronald McDonald House, another might provide enough gas for Ryan to drive one round-trip to see us. One way or the other, we’ll figure it all out. Our little girl will get everything she needs and we will be there with her for all of it.

On a lighter note, we’re planning Savannah’s nursery. I’ve got paint colors picked out:

The purple will be her main wall color. The green and blue will be used in a mural that will be on one wall. Her bedding is in progress, being made by the mothers of two of my good friends. I’ll post more pictures as there’s more progress!

Please keep us in your prayers as we continue through this journey. It’s a lot to handle. Please understand that while we appreciate your concern and prayers, sometimes it’s just too much to have to talk about it over and over and over again. This blog and the accompanying facebook page will help everyone stay informed while helping us feel less overwhelmed. We are so thankful for all our family and friends who will support us and walk with us through all of this.

I think that’s the best word to describe the past two weeks. We headed for home from a family vacation on Monday, August 5th. In the process of coming home, we had to stop in southern Kentucky to get our truck fixed. After several hours and nearly $600, we got back on the road and made it home safely. This was just the beginning of our week.

We had already scheduled an ultrasound for Thursday, August 8th before we left. Back on July 11th, our first ultrasound indicated a potential problem with the baby’s umbilical cord and possibly her heart. We were told that they simply “couldn’t see” the things they needed to see, so they scheduled another one for after our vacation.

During the second ultrasound, the problem was discovered. Unfortunately, I was not mentally or emotionally prepared for that piece of news. At the first ultrasound, while they knew there was actually serious problems, they downplayed it. This meant that I was totally blindsided when the bad news came in that ultrasound room. I don’t state that as a criticism per se, more as a matter of fact.

The whole second ultrasound was weird. About three quarters of the way through the ultrasound, the power went out. This meant that the ultrasound was over, so the tech took the printed images she had to the doctor. When the doctor came in to see us, she started with some small talk and tried to power on the machine again. My guess is that she wanted to have a look for herself. Unfortunately, that never happened.

After the pleasantries, she somewhat blindly delivered the news. She said that she didn’t think it was fatal, but she would refer us immediately to a Maternal Fetal Medicine doctor in Indianapolis. Then after a few questions, she walked out. I was devastated. We didn’t even make it through check-out before I started crying. I was simply overcome with emotion.

We got in the truck, and Lori immediately wanted to seek prayer with our pastor. We tracked down our pastor and in the process found Terri, an experienced RN and Sonographer who agreed to take another look. We then went with Terri and had another look. In that ultrasound, we were able to gain valuable insight into her condition. What Terri shared with us did allow us to have some peace about the situation. Thankfully, my mom was also available to be a part of that second ultrasound.

Equipped with some knowledge, we headed for home and I went back to work. Then later that evening, our first floor toilet overflowed – flooding our first floor. This also sent water pouring into the basement on top of Lori’s jewelry making workshop. Just as we’re thinking, “God, we can’t handle this!”, he says, “Oh really?” The clean up continues, but it could have been much, much worse.

Fast forward to Wednesday, August 14th. That morning we were scheduled to see the Maternal Fetal Medicine doctor and have the baby’s first echocardiogram by a pediatric cardiologist. Unfortunately, this appointment didn’t go that well. The personal interaction with the MFM was rude at best, and the pediatric cardiologist couldn’t actually figure out what was actually wrong with Savannah’s heart. We wrapped up that appointment and headed home.

On the way home, we called Terri to let her know how it went. Given the outcome, she called a friend of hers, Dr. Tim Cordes. See, our RN & sonographer friend, Terri, just so happened to previously work for Dr. Cordes and had his cell number. Dr. Tim Cordes is one of the best pediatric cardiologists in the state. He’s been at Riley for years and teaches at IU Medical School. After a few calls with Terri, Dr. Cordes’ staff from Riley called us and set an appointment for that afternoon.

Since I had to go back to work, Lori’s mom drove with her down to the second appointment at Riley. At that appointment, Dr. Cordes did an extensive echocardiogram that went almost an hour. Then he spent another hour merely answering questions. Needless to say, Dr. Cordes is now Savannah’s pediatric cardiologist and not who we were originally referred to by Lori’s doctor. With the fact that my daughter’s life is on the line, I want no one other than the best! I feel like we now have the best.

Yup, overwhelming. Overwhelmed with thankfulness for friends, family and doctors. Overwhelmed with fear of the unknown. Overwhelmed with thoughts of medical bills. Overwhelmed with all of it.