As I sit here at 4:45am, a normal time to be awake, as she gets really gassy like clockwork around 4am and 7pm. Baby E is such a combination of her brother and sister as newborns. J was an every two hour sleeper/eater. He also had colic and acid reflux. He was incredibly gassy. He wouldn’t latch and was bottle fed. He didn’t mind sleeping in his own bed when he slept. A liked to eat but was an every 3-4 hour baby. She didn’t have the issues to start like J. She was also breastfed. She was a bit more attached but still didn’t mind her own bed when she slept.
E falls somewhere in the middle. She’s an every 2 hour eater like her brother but without the reflux and the colic. She is 98% breastfed but will take a bottle with formula if she has too. She is by far my most attached baby. I don’t know if it feels like it cause I have 2 other kids who need things, but it seems she is only content being held day or night. She only sleeps when she’s held. Unfortunately for her she has the bad luck of being number 3. She cries a little longer than the other two. It’s just the way it is. She has been lucky my sister has been visiting and is a sucker and will hold her all the time.
I find myself rushing her to be bigger. 3 months. 6 months. Hoping that sleeping will get better. I don’t want her to be bigger cause they’re so cute at this age but it would be easier if she could sit up. Play with toys. Feed herself. She is the 3rd.
Cystic fibrosis came as a shock to us. Like the fragile x diagnosis before it, we had no idea this was a possibility. There was no family history of this disease anywhere. So when her newborn screen came back positive. I cried. I didn’t know anything about the disease but I knew that it would be something because mutations are never easy on the person.
I googled it. Never, ever google a disease when you know nothing about it. It shows you the nitty gritty of the disease. All the heart wrenching things that are a possibility. In this instance, cystic fibrosis is rare. It is more rare than fragile x. It is also fatal. The lifespan greatly reduced because this disease primarily attacks the lungs. And without the lungs we die.
Here I am. Holding my 8 day old baby in my PCM’s office as they tell me she has this inherited disease. That I have it to her. We knew fragile x was a possibility but come on. Another one? We cannot catch a break. A visit was scheduled with a specialist to get a sweat test. This measures the cholride levels that your body swears out. Cf patients don’t absorb all the chloride so it stays on the skin. This test would help determine the severity of the case apparently.
In another post I will talk more specifically about each mutation. Promise.
Turns out she lost the genetic lottery but won the cf one. Her particular mutation set causes a mild form. Thank God. I’m reading about this disease wondering how I’m going to juggle her and my son and make sure A doesn’t get lost. It’s been very overwhelming.
So far E has been doing well. I find I look at her and things she does differently. Things I would have seen my others do and not have worried so much. I worry with her. Is that a cough? Does she sound stuffy to you? Don’t touch her unless your hands are clean? Are you sick? Don’t breathe on her. A wants to touch and hold her all the time. I want to let her but kids are germy. I do let her cause I can’t protect E from everything but I limit the time and make sure she’s not face smothering her.
It’s all a very surreal feeling.
I realize that my story may not be new. That my challengers are minor in comparison to what others deal with it. But they are still hard. And they are still my challenges.