About the Amniocentesis
As mentioned, we went for the amniocentesis yesterday at CHOP. It was a lot different than I expected and, as always, Benjamin made it just a little bit more complicated – as he has done with every ultrasound, ECHO, and MRI.
First, they do an ultrasound to determine the position and location of the baby. Ben was lazy and still ALL MORNING, until just before we got started on the amnio. That’s when he started his baby aerobics. When they determined that they had found a safe place to insert the needle to draw some amniotic fluid, they prepped my entire stomach as if I was about to have surgery.
Then they insert a long needle within a thin tube all the way down, through the uterus. Just before they penetrated the uterus, Ben moved into the spot. Then they wiggled it around (oh by the way, OUCH) and withdrew the needle (leaving the tube), and Ben threw his hand right up against it. Since the needle was gone, this was not harmful to him…but he blocked them from getting what they needed right away. It was like when you’re home alone and you think you hear something upstairs…and you have to decide whether or not it’s worth investigating. Well, Ben decided to fight back.
From the time of insert to the time they finish, this process usually take two minutes. It took 20, and it was 20 minutes of intense, weird cramping that I’ve never felt before.
OH, and the fluid they withdrew was blood-tinged. It’s possible that because of the difficulty of getting the needle in, my blood became mixed with the amniotic fluid. Guess what that means? Part of the test will be considered contaminated by my DNA – deeming it useless and inconclusive.
When they were finished, I had to be monitored to check for contractions. And of course I was having contractions…for about an hour or so afterward. Fortunately they slowed down and became less intense, so they let us go home.
Anyway, we now have to wait 10 days for the results because they have to “grow” the DNA…or something. I don’t completely understand, but as long as it doesn’t take 10 days because it’s sitting in queue, then it’s fine. Just really hoping that Benjamin doesn’t come before the results do.
Not So Strong
Another thing I wanted to post about today for the benefit of people who are coming across this blog because you, too, are processing the news that your baby has CDH: I am not as strong as I may seem about all of this.
I’ve received a few messages where people are commenting on how resolved I seem about what we’re doing, how we’re doing it, how things are going to turn out, what Ben’s going to go through, etc. To clear things up, I am terrified – and I think it’s a completely normal reaction, considering the circumstances.
It’s only been two weeks as of tomorrow since we learned of Ben’s CDH. We were 33 weeks and 3 days along. I was very carefully planning where the shelves would go in his nursery, and it seemed like such a major detail to me. We had just detagged and washed his clothes (some of which he’ll be too big for when he’s released), and I had just determined that I had a few shirts that would work great for breastfeeding him. We got the glider for his room and I just sat there, looking at his room, anticipating bringing him home to it very soon.
The way things unraveled is hard to think about. In some selfish ways, I mourned the loss of all the things I wanted to do with and for our newborn son. I was excited to do the newborn pictures of him myself and had been looking up ideas for poses and props. And now, we won’t have a picture of him without wires and tubes for quite some time. I looked forward to watching him sleepily wake up from a nap, stretching and grimacing, deciding whether or not to cry just yet. We wanted to be the comfort for him in the middle of the night, no matter how tired we were. Just holding him and rocking him and soothing him.
I could hardly wait for the moment when he cried for the first time and was handed to me, with Eddie and I both looking down at him, at each other, and back at him.
All of this is gone. No matter how well or badly things go, these events are already gone.
I worry about Ben. I worry about if he feels anything now. If he’ll know that things are not quite right when he isn’t allowed to cry out and take his first breath. If he’ll be at all aware that he isn’t being held throughout the first night of his life as much as I’ll be aware that he isn’t in my arms.
I worry about walking/rolling into the NICU for the first time and seeing Ben – our son and not someone else’s baby – connected to wires and tubes and tape. We’ve toured two NICUs now and it’s surreal to think that we’ll be in one every single day, watching for his hand to move or his toes to wiggle or his eyes to open.
I worry about the worst case scenarios. I worry that he just won’t be able to get enough oxygen on his own and he’ll need to go on ECMO. I worry that ECMO isn’t a longterm solution and that it’ll only buy us some time. I worry that he won’t be able to come off of ECMO and survive.
I worry about the surgery, and about reherniation. I worry that he’ll be sore after surgery, that the surgery itself won’t work for some reason, that they’ll go in and there won’t a diaphragm at all, which gives them nothing to repair.
I worry that after all of this is done, and he is alive, it will hold him back from things he wants to do in life. I’ve been so focused on promising myself to not hold him back and to give him everything he needs in order for him to become everything he wants to be in life that I completely disregarded events that are out of my control.
I worry that he won’t make it at all. I worry about where the funeral would be and where he would be buried. I worry about how we would ever recover from something like that. If we would recover.
I worry about how I would respond when someone asks, “Do you have any children?” if he doesn’t make it. Would I say yes and leave it at that, or would I explain what happened every time, making them regret ever asking?
I wonder how many times my heart can break for him and it always seems to be one more time. And these are just…worries. This isn’t the real thing yet. These are all concerns that shouldn’t exist. I should be thinking about where his shelves should go on the wall, instead of leaving his nursery half finished and temporarily moving five hours away from home. I should be wondering if he’ll get his father’s blue eyes, not whether or not I’ll ever get to see them looking back at me. From the 3D ultrasound, I can already see that he got Eddie’s nose – which is exactly as I’d hoped. 🙂
These are the things I don’t really talk about in general, but it’s important that if somebody else is looking to see if the reactions and feelings they have are normal while waiting for a baby with CDH to be born…I can’t tell you if it is or isn’t. All I can tell you is that you’re not alone in it. And that it’s okay to feel hopeless and hopeful at the same time. And that the emotion of being terrified can be almost as strong as love, and in situations like this, they go hand-in-hand.
Going to try and get back to focusing on specific stuff in future postings, but felt that all of the above was really important to say. Thanks for reading.