After our initial appointment at CHOP, I tried to find people who could relate to us or had been in a similar situation, but I couldn't find too much out there. There was one mother who created a blog to share her family's story. It inspired me and gave me hope. I was so thankful for finding her. I want to give others hope when they are down and one way that I thought I'd be able to do that would be by sharing our story. (Thank you to Love1106 on babycenter.com for sharing your journey!)
We went to CHOP on September 9, 2010. It was the day that felt like it would never come. We had to be there at 8:30 in the morning. After checking in, there were some muffins, fruit, coffee, and tea that we could help ourselves to. I couldn't eat anything that morning because my stomach was in knots. I got called back relatively quickly. The first test was the fetal MRI. It was just like any other MRI...if you're claustrophobic, you won't be a fan of it. I started getting emotional by this point. Laying there in the tube, all by myself, wondering what the outcome of the day would bring us...it was not easy. I developed a new appreciation and love of Billy Joel. The nurse gave me headphones to put on to help disguise the loud noises of the machine. I kept thinking of a boy named Tristan, a "success story" that I read about online. I was thinking of his mom and that gave me the strength to get through the claustrophobia and anxiety that were taking over me.
Next, I had the echocardiogram which is similar to an ultrasound but it takes a closer look at the heart. We then had a break for lunch and were directed to the cafeteria. This place had better options than the food court at the mall! As well as ice cream for dessert, which made me one very happy camper. :)
We returned to the waiting room around 1:15 and waited until about 2:00 before being called back for the last test of the day--the ultrasound. The guy who performed this testing was one of the friendliest we had met all day. I really felt that he answered all of our questions and took time to explain things to us. He was the first one to tell us that he thought the mass was a BPS and not a CCAM. He brought in the physician to confirm what he saw. We still would not have any final answers until the consultation which was set to take place at 4:30. (Thank you, Chris...one of the first ones who helped to set our minds at ease.)
At 4pm, the clock played "Here Comes the Sun." This sure did feel like a sign to me. Without giving away too much just yet, "Sun" is one of the meanings of the name that we chose if we have another little girl.
After waiting all day to hear the results, we were called back into the consultation room. We had to wait for the pediatric surgeon, but we had a nurse coordinator and the high risk OB with us. The high risk doctor asked me what I had known about our baby's condition. Seriously? This was not easy for me. Thinking about it was one thing, but putting it into words was another. Knowing that she knew where we stood at that point but we did not, was not easy. I explained all that I had known about the lung mass.
She stopped me at "fetal surgery" and said we are no where near being even close to have to think about that! She said that the mass was small, very small and that the outcome would most definitely be a positive one. When the pediatric surgeon joined us, she reassured us that the mass was small and would need to be monitored every 2 weeks to check on its' growth.
Jim was ecstatic...I was grumpy, exhausted, and not relieved in the slightest. I kept thinking 'there's still something wrong with our baby, the baby will still need surgery...' I think the only thing that would have made me as relieved as he was would have been to hear the news that the mass miraculously disappeared. In my mind, I was still thinking "in most cases, everything is fine." Well then, what about the other cases? I heard the doctor's voice echoing in the back of my mind "There's still a risk any time anesthesia is involved." "What if...what if...what if???"
The mass grew slightly from the time we had the 20 week ultrasound until the very next week when we had the appointment at CHOP. That was also weighing heavily on my mind. These masses typically grow until week 28 of pregnancy. They are usually found at the 20 week ultrasound. It was scary to me that it grew in a week, no matter how "miniscule" the growth was. If this was something that was to be monitored every 2 weeks, how much more would it grow by our next ultrasound?
September 23 was the date that we had another follow-up ultrasound. And guess what, great news! The mass did not grow at all. It was identical to the size that it was 2 weeks before. Thank you to everyone for your prayers! I believe they are working.
We are now at week 25 and have yet another ultrasound tomorrow (10/7/10). I savor all of these moments that we get to see our little angel baby, but I wish it were for a different reason. Please keep the prayers and positive thoughts coming. We appreciate them more than you know! We are grateful for each and every one.
To find out more about a BPS or CCAM, click on this link: Bronchopulmonary sequestration and Congenital Cystic Adenomatoid | The Children's Hospital of Philadelphia
Here is the story of Tristan:
http://childrenshospitalblog.org/one-familys-story-our-unborn-babys-birth-defect
And here is the blog that inspired me to start my very own: http://thefailingfam.blogspot.com/2009_04_01_archive.html
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