Day of Life 17

I wrote this yesterday, but just getting around to posting now, on Saturday morning while Nora is napping 🙂

It’s Friday, our regular sitter is with Nora so Eric and I ventured back to Iowa City for more snuggles with Nadia. She’s up to 4 lbs 6 oz which is great, although they had to increase her oxygen from 21% to 30%. I suppose I shouldn’t worry, her lungs are obviously not developed yet, but every setback seems to terrify me these days. I panic every time my phone rings, fearing it’s the nicu with bad news.

Nadia did have her eyes open a bit more today than I’ve seen, and I was able to grab a quick picture!

eyes-open

She looks pretty sleepy still, but she made the effort!

It sounds like the scare we had last week, when she had the bad night with fussiness and higher oxygen needs, it was just a UTI. The antibiotics she’s been on should clear it up, in fact I think tomorrow is the last day for those. She will need a few more tests though, a VCUG for one, to rule out reflux of urine into her kidneys, and probably a renal ultrasound, but Eric’s telling me not to worry. He said if it was anything serious, we’d most likely have seen it on one of her prenatal ultrasounds.  And honestly, I’m not sure how much more worrying I can do for Miss Nadia.

I know this is going to sound really weird, but going to see Nadia actually seems to make me sad. It’s like when I’m home I miss her terribly, but I’m so busy with Nora that I don’t have as much time to worry. When I’m at the hospital with Nadia, all I do is sit there and think of all the terrible things that could be wrong with her. I over analyze every tick, jerk, and odd eye movement, even though I know these are normal for preemies. She had hiccups and I panicked, thinking it was a seizure. How do I not keep thinking the worst? I feel like I can’t possibly keep wondering how she’s going to develop. I so badly want more information from the doctors, but even Eric says we just have to wait and see.  One of her doctors stopped in earlier and again said that they don’t have a lot of data to compare MRI results with actual outcomes.  Meaning, an MRI could look very bad, but the child could develop fine, or an MRI could look fairly good and yet the child will have some delays in development.  So we wait.  They keep saying that the good news is that she is acting normal for a preemie her age.

I posted some of my concerns on a Facebook nicu group I’ve been a part of since Nora was born…  And while the women were full of great information and very supportive, I felt worse after reading their comments. They were all so very positive regarding their children with issues ranging all over the board. Most common mentioned was Cerebral Palsy (CP), which is a concern for Nadia… They all said how wonderful their children are, and how they learn from them daily. And I don’t doubt all that. But another part of me is not ready to believe I have a child with disabilities. I’m just not there yet. I still want to think Nadia will be completely normal. And she might be. But then I feel guilty for wanting life with a ‘normal’ child. Why should I be so lucky?

One thought on “Day of Life 17

  1. Oh my goodness Steph…Nadia looks wonderful. She is growing so fast. Her little cheeks are plumping up! As natural worries I just don’t think you can help the constant fears. You will just have to take it day by day. Try to find something good and run with it! ❤️

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