I'm writing this story mostly because it helps me to. I started blogging as creative outlet just to get the mumble jumble out of my head and onto paper... er, screen.
I'm sharing this story mostly because I want to get a lot of the questions that I'm sure are to arise out of the way. I love my friends, I love my family, but telling this story the handful of times I've had to has already exhausted me. If you're not on our shortlist of people we contact, you can find any updates here. I mean absolutely no offense by that - I'm just trying to maintain a little bit of sanity ;)
I'm also sharing this because I was the mom sitting on her computer after the numbness of a phone call wore off. I was researching to cope. I found stories other moms had shared that were full of hope. If any mom happens to be doing any searching and stumbles across my blog in search of hope, I'm glad to offer it.
We had our 20 week ultrasound for baby on the first of March. A couple hours after we left, my doctor called saying that something looked wrong with baby. It appeared that there was a cyst in the chest cavity, and it was pushing baby's heart to one side. I needed to get in for a level 2 ultrasound in Milwaukee the following week. I called the clinic to arrange an appointment, but they weren't able to schedule me right then. They promised to get a hold of my regular clinic on that following Monday to schedule. It was the longest weekend of my life.
The Hubster spent the weekend trying to remind me that baby would be born into a loving family - one ready to take on anything. I knew his words were true, but I couldn't help shake the insta-depression that sank in once I realized that something was wrong with baby.
I spent the weekend online, researching with the tiny amount of information that I had. The way I saw it, the spectrum ranged from fetal death to something that could resolve itself before birth. In a very condensed form, Trisomy 18 was on the top of the list (basically comes down to a chromosomal disorder incompatible with life), and CCAM, which is something that is scary, but manageable and can go away on its own. I was crossing my fingers and toes for a CCAM diagnosis. Although it was terrifying, and would be terrifying for many weeks, it was the best option of everything that could be wrong.
Monday came, and the nurse (who is amazing, btw) from my clinic called and told me she had arranged my ultrasound in Milwaukee for the next day. I thanked her and spent an anxious night knowing we would soon have more to go on.
Our ultrasound was at Froedtert in Milwaukee. Seeing the massive campus, driving by the Children's Hospital, calmed my nerves. I knew we were in the best hands, and very close to home.
After getting weighed, being asked a handful of questions, and getting my belly all lubed up, the ultrasound started. Our technician was very factual and kind, and told us that indeed there was something pushing baby's heart to the side, but it wasn't a cyst - it was a mass. A cyst is fluid-filled, and a mass is more solid. This made my heart drop, but she didn't seem too worried, so I listened to her as she moved on.
This was the part I was dreading - after reading everything I could on Trisomy 18, I was looking for any indicators. Searching the baby's feet, the hands, the brain. I smiled as we looked at baby's brain - it looked fabulous (then again, I'm partial to brains). She moved down the list, and told us everything else looked normal. I breathed a huge sigh of relief knowing that, so far, this was looking pretty bright considering what we could be facing.
The doctor came in and told us this was a pretty-straight forward CCAM. So, what is a CCAM? In a nutshell, it occurs when the lungs are forming, and for an unknown reason, some tissue goes a little haywire. Tissue forms a cyst (fluid-filled) or a mass (solid) and can grow. If it grows large enough, it can begin to move things around. This is what was happening to baby. The mass was large enough to move his/her heart to the other side of his/her body.
Sounds terrifying, right? Well, occasionally, these cysts/masses stop growing, and some even go away on their own. Like, POOF! Gone. No problems. That's almost too much to hope for, but we were told it is very possible, and there is a lot of hope for such a great outcome.
On the other hand, it could keep growing and cause heart failure. If we were to reach such a stage, we do have some options as well. Right now we're not looking at heart failure, which is awesome. But the mass is enough to be moving the heart - so we're on alert for sure.
Week 28 seems to be the magic week when the growing halts, and things start to normalize. We are obviously hoping that this is the case. I'll be going in for many ultrasounds in the meantime to monitor everything. There is another possibility that baby will need surgery sometime after birth, but they do it right there, and have done it many times.
This is obviously a pretty scary time in which nobody knows what's going to happen. I do know that we loved this baby since we first found out it existed. It has a place in our family. The road is going to be rough, but we're ready to endure it. We have what we need, and like the nurse told us repeatedly, there is a lot of room for hope.
I want to thank my family and friends who have already offered many prayers, thoughts, and advice for me in just the few days we have been dealing with this. It makes all the difference when you're not even sure where you are. I'll try to keep this updated for anyone who wants to know how things are going, but don't be surprised if I get all introspective occasionally. ;) For now, keeping baby in your thoughts, prayers, or making side deals with gypsies for his/her health would be greatly appreciated.