**UPDATE: I’m Nervous to go to the NICU today...

My daughter Ellie was born prematurely just shy of 31 weeks gestation on St. Patrick’s Day due to pre-e.

She weighed 2lbs 4oz and now, after 3 weeks in the NICU, weighs 2lbs 12oz.

We were told when she was 2 days old that she has a grade 4 IVH in her left temporal lobe and every Thursday she gets a head ultrasound done to see if it has gotten better or worse.

She also has been diagnosed with Hydrocephalus caused by the brain bleed.

So far, the past ultrasounds have “remained unchanged.” But I have a bad feeling about today’s results.

The doctors have been grooming us on the possibility of her needing to be transferred to a different hospital about an hour away that specializes in neonatal brain surgery in the event that her brain bleed is not healing on it’s own and medical intervention is needed to drain the blood to avoid permanent brain damage.

Usually, the doctors and nurses will feel the top of her head during their day to day checks on her and tell me “it feels good today!” And that gives me some reassurance that she might be healing on her own. But this week, I have to go out of my way to ask what her head felt like to them (I asked once to a nurse and once to a neurologist) and both times they stuttered for a moment and said “It’s not BULGING but it definitely feels fuller... but we will see what the scan shows on Thursday.”

I am trying to stay positive but my worst fear is brain surgery. On top of that, I live only 15 minutes away from her current hospital and it brings me a lot of comfort knowing I can get to her quickly if her condition is ever to change suddenly. The idea of her being an hour away from me makes me very uneasy & very emotional.

*UPDATE*

Thank you all for the prayers and support. It really means a lot to us.

Her scan remains unchanged - which is not the worst news. She will not need to be transferred anywhere just yet so that is a relief. By no means are we out of the woods - she will be monitored for quite some time as her condition could change at any moment.

Her doctors did offer some good-ish news & that was a timeframe that we could possibly take her home!!!! Up until yesterday, when I would ask about when they thought she could be discharged I would get a response along the lines of “it’s hard to say, she needs to be able to do XYZ. She will let us know when she is ready” which I accepted as an answer because you can’t rush these things.

BUT yesterday I was told 2-3 more weeks they believe she can come home with us and that was just so great to hear!!!

She will of course need to come back regularly for her brain ultrasounds and check ups in general but having our baby home with us will be such a game changer!!! So not only am I feeling extremely blessed that her condition has not worsened but also that her doctors gave us some of our hope back.

GOD IS GOOD!