34w6d – Day of Life 41

If it isn’t one thing, it’s another…  I’m exhausted, emotionally.  And probably physically too.  I just feel beat up and drained.  I can’t remember the last time I felt relaxed and happy, not terrified and worried.  It was probably my birthday, March 11th, five days before Nora was born.  Eric and I went out to dinner together…  I miss having fun, enjoying the days.  I went for a walk outside around the hospital this afternoon while Nora’s PICC line dressing was changed.  It was so nice to get out but I saw several couples walking with strollers…  I had to hold back the tears.  There is still fear we’ll never get to that point with Nora.

Some good news today, Nora was extubated.  She seriously hated the tube down her throat, and who could blame her.  She’s back on a form of CPAP, basically just a nasal cannula forcing air into her nose.  She still has to remember to breathe though, and she is forgetting from time to time which sets me on edge.  Every time the monitors beep showing a low heart rate, respiratory rate, or oxygen saturation level I jump out of my chair to check on her.  Sometimes this is every thirty seconds…

Nora is fussier today, acts starving, and she probably is as food has been held since Thursday.  It sounds like they will slowly start getting her back on breast milk beginning tomorrow.  She loves her pacifier and it normally calms her quickly, but she can’t have it again until she’s more stable.

There was mention of us moving back to Bay 2 or 3 today but it’s getting late in the day and we’re still here in 1.  We’re told Nora is the least sick baby in Bay 1, so hopefully she’ll be moved soon, probably early this week.

Aside from all the other crap, I’m now worried about Nora’s right arm.  She had an IV there earlier this week and they used it for one of her two blood transfusions.  Some of the blood from the transfusion seeped into her arm causing a huge, disgusting bruise.  They originally told me it would heal completely, but today they are saying the blood in her arm could cause some of the tissue to die, slough off, and perhaps leave an indentation or scar on her arm once healed.  Great, one more thing to worry me.  I know big picture this is minor, but still.  I feel like Nora has been through so much, like what else?!

I know Nora needs her rest, and so do I, so I’ll probably leave the hospital soon for the day.  There is laundry and cleaning and God knows what else at home waiting for me.  At some point I’ll feel like a normal person again, right?  I mean, you all don’t even want to know how long it’s been since I’ve shaved my legs!  And when will I stop living in yoga pants?  Although now that I’m technically unemployed, maybe I don’t have to stop!

Tomorrow will be better, right?  Everyday that passes brings us closer to home.  Nora’s due date, June 1st, is now 35 days away, my new goal for home.  I can do this, it’s been 41, we’re more than half-way through this battle…

13 thoughts on “34w6d – Day of Life 41

  1. My heart aches for you. The constant twirling thoughts and worry make it nearly impossible to get some rest. Praying and hoping for peaceful and uneventful (unless good events) days ahead. Nora is a warrior!

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  2. I have been reading lots and am so sorry you’re going through this right now with Nora. From the extremely short time my daughter spent at children’s hospital, I have to say you are such a warrior for keeping it together. I was a total disaster for 30 hours. I’m thinking of you guys and baby Nora tonight.

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  3. I can only imagine the exhaustion of this constant worry and the longing to be like other parents outside those hospital walls. I commend your attitude in looking at a new goal discharge date and recognizing you are more than halfway there. I’m keeping you all in my thoughts and prayers and sending a big warm hug and a pitcher of hope for brighter days in the coming weeks.

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  4. Can you ask about an IV in her arm? We just brought our son home from NICU and his veins kept blowing in hands and arms so they went with head. It looked terrible but that lasted 5 days with zero
    Complications. Still prying for you eric and Nora. We were only there for 9 days so I can’t imagine the heartache you are going through after this amount of time. I wish I could take your pain and worry away.

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  5. you are so strong. stronger than most even at your weakest moment. be there for Nora. love her. love yourself. love your husband. you will get through this and will be on to better days xo

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