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35w2d – Day of Life 44

  • Weight: 4 lbs 13 oz
  • Tube Feedings: 12 cc every 4 hours, which is only 2.4 oz every 24 hours.  She is still acting really hungry between feedings so hopefully we can continue to increase to get her back in the correct range for her weight and age.
  • Breastfeeding: Obviously on hold for who knows how long 🙁
  • Antibiotics:  Down to just one antibiotic which will continue until at least May 13th.
  • Respiratory: Down to a nasal cannula with just a little pressure!  She’s so much happier!

Overall, today was a good day.  We made some progress with the oxygen and increased feeds and Nora is definitely happier today, back to smiling in her sleep and sucking almost non-stop on her pacifier.  The infectious disease team stopped by to check on her, although didn’t really offer any answers.  They still suspect that Nora acquired the first e coli infection from my placenta, and this second infection, well, they aren’t sure.  They did say she was diagnosed on day 29 of life, and day 28 is the average for late onset strep in babies.  A repeat brain MRI is ordered to check for any swelling or bleeding from the infection.  I pray they find none.

Nora’s immunology workup is still in progress.  So far no answers, but they are waiting until Tuesday to redraw blood for more labs.  More to come on this I guess.  We should have answers before her antibiotics are complete, so at least until then I don’t have to worry about her getting sick again.  Too bad she can’t live on antibiotics!

In all seriousness though, how am I ever going to relax and not be terrified of her getting sick again?  I know this is not the same, but I can’t imagine how a cancer patient must feel, worrying the cancer might come back…  How does one live with that constant worry?  And of course I keep googling… which is awful I know.  Today I was convinced Nora has leukemia, as it’s twice as likely in IVF children and fits a lot of her symptoms.  Eric assures me there would be clear signs of this though…

Stress has exhausted me once again so to bed I go.  I pray Nora continues to improve and thrive.

9 thoughts on “35w2d – Day of Life 44

  1. I’m glad to her that Nora is feeling better and making progress each day. Sending lots of prayers your way!

  2. I know we don’t know one another, but please know that you and your family are constantly in my thoughts and prayers. I pray for continued strength for you and your husband and for your sweet baby too! She sure is a tough cookie and is lucky that you’re her mama <3

    1. Aw, thank you so much, I so appreciate the thoughts and prayers. I think they are working as the past few days have been very good!

  3. You and Nora continue to be in my daily thoughts. Thank you for the frequent updates.

  4. That’s exactly how my families feel when their kids hit remission. They live with the worry and fear of relapse. You’ll never stop worrying about Nora, you’re her mommy! That’s your new career…you got the early promotion. Hang in there mommy. Nora has already proven her amazing strength!

    1. I honestly can’t imagine living with this worry and fear for an extended period of time. I mean, I expected motherhood to come with worries, but this is a level of fear I was not expecting or prepared for. Day by day…

      1. I’m not sure there is any way to deal with it other than talking about it like you’re doing. Do you talk with other NICU moms or read other NICU blogs? I hope you know so many of us think about you and pray for Nora all the time! xoxo

        1. I have started following a few NICU blogs. I feel like my life is now consumed with thinking of the NICU though, so maybe I’m in overload…

          1. I’m sure you’re in overload! Someday your blog will be a great source of information and comfort to a mom…hang in there!

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