With trisomy 18, it is common for her to have conditions with how she is developing. I knew going into this appointment, that we wouldn’t get good news. It’s unfortunate, but it’s the hand we were dealt, I’ll never know why, and I’ll never understand why this had to happen to her.
It’s a strange thing to prepare yourself for, but I knew I had to. I prepared myself for the worst, because honestly, I know it won’t get any better, no matter how much I wish it would. It’s still unacceptable on so many levels for me, but at the same time, we have no choice.
During the ultrasound, they found that our baby has multiple conditions. The cystic hygroma is much larger. In some way, that still shocks me every time they tell me that it is larger than the last time. At our last appointment with this doctor, which was three weeks ago, the cystic hygroma was behind her neck and head, and measured 16 mm. Today, it measured 28 mm, and it has exceeded to the front of her head and down her spine.
She has also developed hydrops. I knew this could happen, I just hoped that it wouldn’t. Hydrops are common with having a cystic hygroma, sometimes a baby will develop hydrops with a cystic hygroma, and sometimes they won’t. Hydrops are an excess amount of fluid in the body. She has developed a lot of fluid in her body within the last three weeks. She has fluid in her chest, surrounding her heart, in her stomach, her arms, down to her waist and in her legs, it has not completely taken over her body, but unfortunately it is in the majority of it.
Her heart is small. The left side of her heart is smaller than the right side of her heart, and she has a hole in her heart because it did not form properly💔
Her bladder could possibly be functioning, but if it is, it’s hardly functioning enough to tell.
I have a doctor appointment every week to check her heart beat, and her heart rate has lessened each week. I basically hold my breath from one week to the next, hoping the following week I will get to hear her heart beat again and she’s still alive.
Right now, she is measuring to be only 6 ounces. She is so small, that it’s hard to tell if she has any other developmental issues.
One thing I have been adamant about is keeping her here as long as she will stay. I know god put her here for a reason, I don’t know if I’ll ever understand why, or why he chose this to happen to her, but I have to believe it’s for a good reason that’s bigger than I can ever understand. Although this has brought us so much sadness, she has shown me love in a way that I have never known before. She has changed my life. She is apart of us, and she always will be.
During our appointment, she looked so happy, active, and content. She loves to move her hands and fingers around. She always has at least one finger pointing in pictures I have of her. She could not keep still. In a way, between doctor appointments, I feel her moving and think to myself, she feels like a normal healthy baby. It’s hard to grasp that she is so sick.
Before we left, I asked our doctor if she felt pain, or if she ever would feel pain. We never want her to suffer. I feel so helpless. He assured us that none of her conditions are hurting her, and when her heart does stop, it will be peaceful for her. In the end, that’s all I can ask for. I never want her to struggle.
This is the hardest thing I have ever had to do.
No comments:
Post a Comment