I’m one of those types of people who internalizes their emotions, which can explain why I don’t know how to react in certain situations. This has never been more apparent to me than when our doctors are explaining any new information about our girls. I become very self aware, because if I’m too emotional than I seem weak, but if I show nothing at all then I must not care or grasp the situation. Heaven forbid I interpret something as a sliver of hope because they are gonna come down hard on me with a little dose of reality. Why do I care so much about how other’s react? Its not that I care, its just that I am completely aware of eye contact, body language, and the words they choose to use. And if something was said that was completely rude or insensitive you bet I would go full on mama bear.
When I go into my appointments I try to keep somewhat of a level head so I can process what’s being told to me and so I can remember everything so I don’t lose focus or “veg” out. Its always a good idea to write down any questions or concerns before the appointment, because most likely you will either forget or get wrapped up in the overwhelming emotions. Luckily my husband is good at handling most of the questions and “what if” scenarios from the top of his head. Also, each appointment brings new discoveries both good and bad, so its also best not to keep your expectations too high.
Now with all this in mind, the better part of March has been pretty emotional for me. I’ve allowed myself to feel all of the emotions that I wouldn’t let myself process previously in my life. Its kind of like opening up a flood gate and not knowing how to close it. And most of it of course is about my girls diagnosis and how to proceed with all of the decisions. I’ve also had to quit my job and drop a really important class I needed for my future career. Not to mention all of the normal life routines and chores that must go on and don’t stop. Its been a lot of adjusting that I didn’t realize would be so challenging. I took pride in all of the roles that I have made for myself, not realizing how important they really were to me until they were gone. Even writing this down and admitting to all of these things is making me feel vulnerable.
In addition to our fetal echo-cardiogram on March 13th, we also had a quick checkup and ultrasound with my doctor at UCLA. The picture above is from that day and shows somewhat of a profile of the girls heads. We went into the appointment on a high because of the optimism of our cardiologist just minutes before. She didn’t see the results of the echo so she only went off what she knew so far, so I didn’t take what she said too harshly because she didn’t have all the facts yet. At that point she believed we wouldn’t be going home with our girls, but the phone call I received from her on the 15th showed a slightly different view.
March 15th, 2019:
Every month all of the specialists at UCLA have a meeting and go over all of the high risk cases, and the phone call reflected what they talked about with our girls. Basically there are a lot of unknowns. We won’t know until they are born what kind of care and assistance they are going to need. Which leads me to believe that we are going to have more time with them than we thought. I really want to breast feed or at the very least pump, but they might need a tube down their nose to eat. There is also some kind of medication for their heart, I can’t remember if its for pain or to help regulate oxygen in the blood stream through their heart. Other than that they are developing normally like any other child.
We didn’t necessarily learn anything new, but there’s more possibilities and our doctor is finally seeing it.
No matter what your going through in your life its important to allow yourself to grieve and go through all of the emotions that you are feeling. No matter if they seem shameful or negative. It does not make you weak, it makes you human. Now that I’ve pushed open my own flood gate and have become completely drenched, I can move on to focus on how to wade the waters. The most important task at hand is taking care of my family. Its not going to be easy, but anything worth fighting for never is.
Stay tuned for more about our journey.