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30w2d – Day of Life 9

Today has been a mix of emotions.  I’m very scared for Nora, and sad too.  I want her to live a full life as a healthy, happy, normal kid.  But I fear that reality is slowly being ripped away.

I’ve been at the hospital today since around 7:30am.  I was here last night untill after 11pm, and with pumping so often, even during the night, I’m drained.  I need more sleep tonight or I’ll be no good to my baby girl.

Speaking of getting up in the middle of the night…  The lactation consultant told me I’m a pumping rockstar, as I’ve been getting 25-30 oz each day.  In fact, my supply is so great that I can now cut back to every three hours!!!

So far today we’ve met with neonatologists, pediatric neurologists, and infectious disease specialists.  They all give us a similar version of the story…  Nora is very sick, but she’s in great hands.  Our first priority is to fight off the infection (bacterial meningitis) in her brain and spinal cord.  She’s getting high doses of several antibiotics, so now we wait  She’ll be on the antibiotics for at least three weeks, maybe longer.  The doctor’s actually expected her to have a rough night last night, even warning us they may need to intubate, but thankfully she had a great night.  Well, great for all things considered.

As hard as it is to watch her in pain, I’m more worried about her long-term outcome.  Several doctors have explained the risks to us, ranging from hearing loss, to issues with learning and development.  For the time being I’m a bit in denial, not wanting to think that Nora’s brain is damaged.  Her neurologic exam today went well, which is a good sign.  Her pupils were reactive, she is sucking on her binkie, she will grasp your finger… all good things.

Either this Friday or Monday an MRI of her brain will be done to check for bleeding or other signs of damage.  And she’s being watched extra carefully for any seizure activity.  Both would be signs of more complicated issues in her future.

So for now I pray.  And love her.  And try to comfort her, although at times that feels rather impossible without the luxury of holding her.  It’s so difficult just to stand by her bed and watch…

Thank you so much for the emails, texts, Facebook messages, blog comments…  They are all so wonderful.  And I apologize if I haven’t gotten back to you.  As much as I love the support, sometimes the amount of responses are overwhelming to me.  Please know your prayers and thoughts are much appreciated.  I’ll update again when I know more.

20 thoughts on “30w2d – Day of Life 9

  1. Thanks for keeping us updated! I can only imagine what you and Eric are going through. Praying for you guys!!! Xo

  2. Sending you love. And hoping for the very best for Nora, both today and in the long term.

  3. Praying for Nora + you + Eric… and sending you tons of hugs.. xo

  4. Huge hugs and hoping for the best possible outcome!

  5. My heart is so full for you Stef. Hang in there. You are doing a great job!

  6. Sleep is precious and you definitely need it to stay strong and healthy for Nora Mae. If you get sick you won’t be able to visit until healthy again. Make sure you take time to rest and heal your body and mind from all that is happening.
    I cannot remember how I found your blog…I’m sure it was from a blog, from another blog…etc. I’ve only followed for a short time, but your strength and courage are strong. It is evident in your words…you’ve got this…for Nora Mae!

    1. Yes, I’m certainly learning I need my sleep or I’m no good here! I slept from 8:30 last night until 6 this morning, well, with pumping breaks, but still. Bed felt so nice!

  7. Hoping for the best! Hang in there!

  8. I’m new to your blog. Praying for Nora, and all of you as this is so hard and scary.

    As a 3 yo I got meningitis. My mom tells me how my eyes were rolling back in my head. I’m now in my 40s, healthy and no effects. I’m telling you my story to give you some hope. Nora is in very good hands and I will continue to pray for 100% recovery.

    1. Thank you, it’s very comforting to hear stories of good outcomes… I so want her to be a normal child!

  9. Lots of prayers for all of you.

  10. Thinking of you and praying for you and that beautiful baby every day!

  11. nora is always in my thoughts. keep fighting little one xox

  12. I know that helpless feeling, but just hearing your voice, your smell, providing breastmilk for her… You’re doing so much! Even if you can’t hold her, in this extraordinary situation you are doing an amazing job at being Nora’s momma. Part of that does mean taking care of you too. The guilt will creep in, but remind yourself of that.

  13. Been thinking of you today and looking forward to each update. I believe your little one is a fighter.

  14. I am thinking of and praying for wee Nora, you and Eric.

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