September's Ultrasound

Today, we met with my new Doctor at West Penn for an ultrasound. Also, we saw a pediatric cardiologist to evaluate Ramsey's heart. Fortunately, the heart is in good shape so we won't need to see the cardiologist again! We didn't gather anything new from the ultrasound- our next one is October 28. At a later date, they will be able to measure the lungs to get an idea of how big they are. From what I can tell, while they will continue to monitor things via ultrasound, and hope for plenty of room for lung development, there's a lot we won't know until Ramsey is born and the surgery is complete.  The first step after delivery will be for the NICU team at West Penn to intubate him and take him directly to Children's Hospital, about 5 minutes from West Penn. At Children's he will stay in the NICU until they determine he is ready for surgery. I wish we didn't have to transport him at all, since this is a critical move. We need to schedule a meeting with the surgeons at Children's since we have many questions for them.

Following is a review from our last appointment on August 24, it gives a good explanation of the location of Ramsey's organs and I think it's safe to say that the same condition currently exists. "The baby's stomach was seen to be at the same level as the heart and is present within the left chest area. There may be some amount of small bowel in the chest as well. The heart is shifted to the right, however, pulmonary (lung) tissue is seen behind the baby's heart and there also appears to be some in the posterior left chest." Although the description sounds bad, the doctor said it is easy to put the stomach and bowels back where they belong. The hard part is whether or not the lungs can function.

Thanks to all for their continued support and prayers. It means the world to us, but it means even more to the life of little Ramsey.          

Walt Disney World

Just returned from a great vacation with 10 other family members at Disney World! We had a wonderful time and it was a good break for us! Now, time to finish recovering from the flu we caught while there. I'm hoping to feel better for our appointments this Thursday and praying we get some hopeful news.

Today's Checkup

Today was a routine appointment in Latrobe, our first since the diagnosis. My appointments will alternate between West Penn and Latrobe, but the role of my doctors at Latrobe will be secondary.  Ramsey's heartbeat was still nice and steady and my blood pressure was good.

The Name

When choosing a name for the baby, we felt it had to be another "R" name, like his brother Reed.  We chose Ramsey, my mother's maiden name.  For the middle name, we wanted something with a significant meaning. When we found out Armand, his grandfather's name, meant "Strong Soldier" it seemed like the perfect choice. We want our little guy to stay strong and fight for a healthy life at home with us :) The name Ramsey means "from a wild garlic island"...I guess his name is strong on two counts!!

The News

Our first ultrasound on August 24, 2010 told us the good news...we are having another boy! Reed is going to be a big brother!  The sonogram also revealed something more- a hernia. My doctors recommended that we go to West Penn for a Level II ultrasound the following week, on August 30. Although concerned, we were convinced it would be another "false alarm" as we had when we were expecting Reed. (Measurements from Reed's sonogram indicated he might have Down's Syndrome, but fortunately, they were wrong).

At our appointment, we knew what to expect from the previous year. Genetic counseling, followed by the ultrasound. We had the same counselor and doctor who both remembered meeting us almost three years before. The counselor immediately asked what we had been told. We had only been cautioned that it looked like he had a hernia near his stomach. My online research revealed three types of hernias; the first two generally go away on their own, the latter is much more serious and it's called CDH. Immediately, we were told the sad news- it is in fact CDH  (Congenital Diaphragmatic Hernia). Ultrasound revealed that his stomach has herniated up into the chest, pushing the heart aside. Lung development is still unclear (at that point, we could only see one lung).

The Plan:

I will now deliver the baby at West Penn Hospital where I have been assigned a new doctor. The baby will be taken to Children's were surgery/surgeries will be performed. Throughout the remainder of the pregnancy, the baby will be monitored for signs of heart related distress and most importantly, for lung development. 

My next appointment at West Penn is September 30.  We are hoping to have a clearer picture of the lungs and also if any other organs have moved into the chest area. We will also meet with a pediatric cardiologist for an echo of the baby's heart.

Let's pray for encouraging news at this appointment and strength for each of us along the way.