34w5d – Day of Life 40

I’m beginning to strongly dislike posting updates that aren’t all happy…  Hopefully the all happy ones will be back soon.

So the facts:

  • Weight: 2,240 grams, which is almost 5 lbs.  I have to think this is incorrect based on how they weigh the preemies.  Nora has a lot of breathing equipment in her bed now, which I assume is accounting for the extra jump in weight so quickly.
  • Tube Feedings: Held until Monday but she is back on nutrition via her PICC line.
  • Breastfeeding: Obviously on hold for who knows how long 😦
  • Meningitis Status: Culture of blood drawn yesterday hasn’t shown any growth for 24 hours now… more on this below.
  • Antibiotics:  She is on two now, one that works best for strep, her most recent infection, and another which is better for e coli, as a precaution.  Can you ever be too safe?
  • Respiratory: Intubated on a jet vent.  This thing is kind of loud and makes all kinds of interesting noises.  Eric is convinced it’s also a fax machine and coffee maker…
  • Temperature: Bed is back to 36.5 C, so hoping we don’t have to start all over on this too!
  • Location: Bay 1, blah.  I’m not a fan of it over here, and not only because I know Nora is sicker.  It just seems like the environment is more cold, more sterile, and for obvious reasons, but still.

I feel like I have so much to say, so many thoughts and feelings, but no idea how to get them out on paper, AKA, the internet.  This entire process is so much more challenging emotionally than I could have ever imagined.  You know how I was so worried about bonding with Nora and feeling like she was mine?  Well, I think I’ve finally crossed over to totally loving her, as my heart aches every time I think of what she’s going through.  Every time they come to draw more blood or redo an IV, which seems to happen a lot around here!  She fights the tube down her throat often, tries to cry but really can’t…  God, it’s so hard to watch her in pain.  They have been giving her Ativan to help relax her, and as much as I hate to think she is being drugged, it makes me feel much better to see her calm and relaxed.  Maybe they could give me some Ativan too!

I don’t even really remember where I left off on updates.  I’ve been updating my Facebook from time to time too, but with not as much information.  Basically just asking for thoughts and prayers to heal Nora.

I think officially they are saying this is Nora’s second round of meningitis since her birth almost 6 weeks ago.  I really thought we were over the first, which was caused by e coli in her blood and spinal fluid.  Her PICC line was removed last Monday I think…  which leads us to this new infection.

When Nora was found to be sick Thursday they immediately starting running all the same tests, including checking her blood and spinal fluid.  Her blood was immediately found to be infected with strep, a different bacteria than the first time.  Her spinal fluid was also checked though, and on the first look seemed to be clear of any infection.  When allowed to culture for several days though it was found to also be infected with strep.  Side note, when that lumbar puncture was done they accidentally hit a vein, so there was blood in the sample of spinal fluid.  Eric and another doctor here believe her spinal fluid is clear, that the growth found was a contaminant from the blood in the sample.  Perhaps it’s just her blood we should be worried about this time, but we might never know.  The treatment is the same regardless.

Nora has now had two significant infections during her short life, which has surprised her doctors.  At this point, their best guess is that when her PICC line was removed on Monday, strep was somehow able to creep into her blood and make her sick.  I’m told both strep and e coli are everywhere, so apparently this isn’t too far-fetched of an idea.  The good news, the blood sample they took yesterday hasn’t grown any bacteria yet, so a sign the antibiotics are already working.

Knowing that strep and e coli are everywhere leads us to why Nora is so sick from them, but yet other babies here aren’t.  Well, actually, some probably are, but it’s rare for a preemie to get so sick twice in such a short period of time they tell us.  That has led doctors to investigate a bit further, calling in more specialists, infectious disease, again, and immunologists.  We haven’t met with infectious disease yet.  They were here when Nora first got meningitis, but it seems we keep missing their visits this time around.  A pediatric immunologist was here yesterday to speak with Eric though, and from what I gathered, she really thinks these two significant infections are simply bad luck.  She doesn’t believe Nora has an immunological disease.  An entire workup is still being done, but since most of the tests are so rare, there are only a handful of labs in the country that can complete them, and therefore the results could take a week or more.  The immunologist did give us some information to read, which I haven’t made time for now, but will.  She also said that babies get most of their immunity from mom during pregnancy, but this happens mostly in the 3rd trimester, and thus Nora, like most preemies, missed out on that.

So we wait.

Nora looked very comfy this morning when I got to the hospital…

FullSizeRender (11) FullSizeRender (12)

 

I guess overall I’m just really sad and scared from this setback.  I was so worried weeks ago that Nora would have developmental delays, or possibly worse issues, from the meningitis, but now, with two infections, I’m that much more worried.  I want her to be a happy, healthy, normal child, but no one can tell us exactly what her future will look like.  There are plans for another brain MRI, but I’m not sure when that’s scheduled.  We’re also still waiting on ultrasound results of her abdomen.

She is such a sweet little girl, I hate to see her in pain, to be suffering, to be put through so much in just 6 weeks of life.  I want to be positive, to be hopeful, and I am, to a point, but there is so much I don’t understand.  I’m not terribly religious, but many keep telling me to trust God.  But why does God force these tiny miracles to endure so much…?  I want to be able to picture Nora home with us, but at this point I really can’t.  How do I know she won’t keep getting this sick?  How will I ever not be scared that her health is about to take a nosedive?  And she got so sick so fast this time.  If she was home with us it could have been so much worse…

I’ve given up on my personal goal of having Nora home by May 15th.  The antibiotics this time need to run for at least 14 days, but I just don’t see mid-May as a possibility for discharge now.  I’m sad, and angry, and fed up, and just sick of this place.  I thought the birth of my daughter would be such a happy time.  But instead the past 6 weeks have been filled with pain and sorrow.  I miss holding my little girl…

21 thoughts on “34w5d – Day of Life 40

  1. “Liking” your post feels wrong somehow. Consider it an acknowledgment rather than a like of the content. I’m so sorry Nora is having such difficulties so early in life. I’m sincerely hoping this is the last of her big battles and from here on out it will be smooth sailing. Big hugs to you and your family.

    Liked by 1 person

  2. Holding it together and getting your feelings out are going to be difficulty, but they go hand in hand. You do a beautiful job articulating not only have you feel, but the medical aspect of Nora’s journey on your blog.
    Nora is in my thoughts for healing, comfort, no pain, and staying strong! I know your little fighter is going to get through this infection just like the first!!! xoxo

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  3. Ohhh… I don’t know how you are doing it. Hopefully once she is home, the whole newborn thing will feel like a piece of cake! She is looking so big and healthy in those photos!

    Also, I’m very religious, but it makes me squirmy that people are telling you to just “trust God”. You are right to question a God who would let your miracle differ like this. And there are no easy answers for that. But I do believe he cares deeply for you and Nora and suffers with you.

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  4. I’m so sorry you’re going through this. I really thought you were close to going home when she was ready to go to bay 4. I’ve been thinking about you a lot lately. I will continue to hope Nora improves soon and she’s able to overcome these obstacles. Hugs to you! If there’s anything I can do let me know. I’m just a couple hours away!

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  5. Oh crap. I’m so sorry she’s hit these setbacks. I hope it is just bad luck because she’s a strong little girl (like her mommy) and soon this will all be behind you. I’m praying for her and rooting for you guys and all the hospital staff! Huuuugs!

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  6. My heart hurts so much for you and Nora. I am so deeply sorry she has had these setbacks and I echo your hopes that things will get better and see her heading home with you. Of course you are fed up and angry and afraid. I would be too. Please know I’m keeping you and Nora in my thoughts and prayers as always. Thank you for continuing to update. I might be inclined to shut down and stop posting but want you to know that I truly appreciate your updates and am sure others who are keeping a vigil for Nora do too.

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    1. Thank you so much for the thoughts and prayers, I truly appreciate them. I’m so glad I started a blog, otherwise I would have never ‘met’ such wonderful people like you. In the back of my mind I have this dream of maybe meeting you and others in person someday…

      I will continue to pray for you as well, as I know you have been through far more than Miss Nora and me over the years 🙂

      Liked by 1 person

  7. I too click the like on a post like this one as a sign of support, and in now was an actual “like”. I can hear the frustration, the worry and the heart of a mother in your writing. I am continually amazed at everything Nora is facing and overcoming – I think she has her mommies fighting spirit. 🙂 Sending you all so much love!

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