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35w1d – Day of Life 43

  • Weight: 2,240 grams, which is almost 5 lbs. (not updated)
  • Tube Feedings: 8 cc every 4 hours, which is only 1.6 oz every 24 hours.  I feel so bad for her, as she acts starving…  I know this is best for her right now, but it’s so hard to watch her cry between feedings.  This is being fortified to increase the calories.
  • Neonatal Venous Nutrition (NVN) – Nora is receiving nutrition via her PICC line.
  • Breastfeeding: Obviously on hold for who knows how long 🙁
  • Meningitis Status: Culture of spinal fluid drawn yesterday hasn’t shown any growth for 24 hours now.  Great sign, but from what I know now, I’m terrified every time they do anything that involves her blood or spinal fluid.  I’m so scared she’ll acquire another infection.
  • Antibiotics:  She is still on two now, one that works best for strep, her most recent infection, and another which is better for e coli, as a precaution.  I’m not sure how long she’ll be on this round.
  • Respiratory: She is no longer intubated, but on Sunday when they went to a nasal cannula she didn’t do the best.  She was forgetting to breathe and dropping her heart rate.  Since then she’s been on a newer method of support, Nava maybe, I could be getting the name wrong…  It’s a tube into her nose just to the back of her throat, and then also a tube in her mouth down to her diaphragm.  It will trigger a breath for her if she doesn’t take one in so many seconds, I think right now it’s set to 5 seconds.  Needless to say, she HATES these tubes.  Thankfully she is doing well on it and they are lowering her support daily.  I’m so hoping we are off this soon.  They gave her Tylenol this afternoon to calm her in case the tube in her nose was the cause of her fussiness.
  • Temperature: Bed is back to 36.5 C or close to that.  She is bigger now though, so hopefully once she is over this sickness she won’t need the temperature support.
  • Location: Bay 3, back to our old room, that view I thought I was finished with… So much for that!

I probably should stop googling meningitis…  It’s just scaring me for the future.  Of course no one can tell us what to expect, but so far we caught the infections fast, which I’m told is a HUGE benefit.  And comforting to know her brain MRI and EEG were normal.  I believe they will be ordering another MRI of her brain soon.  I just wish someone could tell me she will be okay.  Eric keeps telling me she will be perfectly fine, but is he just sparing my feelings right now?

Nora’s fussiness scared me today.  I mean, I know babies cry, but one of the signs of infection, specifically meningitis, is an inconsolable baby.  I know she is on meds right now and therefore it’s not getting worse, but it still scared me.  And what does this mean for once she is home?  Will I constantly be worrying she is sick again?  Will I have to shelter her at home with no visitors until her immune system can grow and mature?  What do other preemies mom’s do to prevent sicknesses in their little ones?

33 more days until her due date…  This would be so much easier if someone could tell me she will come home.  That my life will feel normal again.  That we will have happy days again.


18 thoughts on “35w1d – Day of Life 43

  1. Wishing you many, many, many happy days in the future!!

  2. Many hugs as I always send for peaceful and calm days as you visit Nora! xoxo

  3. Thinking of you all the time these days. I look forward to each one of your positive updates. Your little girl is a trooper!

  4. I really hear your bundle of worries. It doesn’t help that you have so much toke to fret while your ability to care directly for Nora is limited right now (again). I am very sorry this is so hard. I hope Nora feels better and is less fussy soon as her feeding a increase again and she gets those annoying tubes out. As for Eric, maybe he is trying to reassure himself too and not merely placate you? I’m sure it’s scary for him as well. Meanwhile I am keeping you all in my thoughts and prayers.

  5. From what I’ve found, a lot of preemie parents have a hard time letting go of the hyper-vigilance around germs after the NICU. Definitely coming home has it’s own set of challenges although it’s sooo much better than what you’re dealing with now.
    I can relate so much to everything that’s going on with you there. We also went through intubations, extubations and reintubations. She hated the tube too and the nurses kept commenting on how fussy she was. I was scared to touch her sometimes! Now I know that’s actually just her personality. I think it’s true of these feisty ones! They can’t be the little fighters they are without letting everyone know when they are ticked off. So many hugs to you and germ-free kisses to sweet Nora!

    1. I never thought I’d be one of those parents afraid of germs, but yes, this has definitely changed me in many ways.

      I was able to breastfeed Nora this morning and I figured she would go to sleep right after, but it took her awhile, she was fussy for a bit, and I almost wanted to call in the nurse and ask what was wrong. But then I remembered, babies cry and I’m her mom. I burped her again and she calmed down…

      It’s very comforting to know others understand this struggle 🙂

  6. We brought our preemie boys home during cold and flu season so we only allowed immediate family to visit. Our pediatrician recommended keeping them home for the first few months. We were very, very cautious and it paid off, the boys never did get sick. People were very understanding that they needed to wait until they were bigger/stronger to visit.

    1. I totally get wanting to protect them at home for a few months… but it’s a little depressing to me to think of more days stuck in one place. I mean, home is better than the NICU, but gosh, I’m so excited to do normal stuff again with my baby!

  7. I’m sure it seems like there is no end in sight but one of these days she will be home and you guys will move past this. Hope for your sake it is sooner rather than later.

  8. Wow, lots of great news!! Nora is back in Bay 3, nearly 5 lbs, and no growth on the culture. YAY!! I don’t think Eric is just sparing your feelings…I think he’d be honest with you. I really empathize with the feelings you’ve been experiencing…it’s a personal hell to worry daily whether your baby will make it and whether she’ll be okay. I don’t think anyone can realize how excruciating it is to ride that pendulum of sadness and hope unless they’ve been through it. We’re thinking of you daily—and knowing that you have every reason to be swinging on the “hope” side of things with an amazing gal like Nora.

    1. This is a personal hell, you can say that again. And I’m so sorry that you’ve been put in the position to experience it as well. No one deserves this. The good news though, is that we are all doing well, day by day 🙂

  9. I pray so hard that this difficult time is coming to an end!

    1. Things do seem to be getting better!

  10. I’m gonna say yes, you will want to shelter her at home to protect her immune system for awhile. Most preemie families do, to varying degrees. When you are close to home you will talk to the NP about those things. It will depend whether she is on oxygen or not. It will depend what season it is. We came home in the summer and were crazy about hand washing but let people see them. As soon as it was flu season we went into isolation, asked all our family to get flu shots and didn’t let anyone else see them. We skipped holidays and most family gatherings, especially if they involved other children (who don’t understand why they can’t wipe their nose on my kids). You will talk to your docs and figure out what level of precautions is best for you. Hopefully Nora will qualify for Synagis this winter to protect her from RSV. Being a preemie mom gets MUCH easier, but there are definitely things we have to worry about that other parents don’t.

    1. I know isolating her is best for her, but gosh, the thought of being stuck at home is a bit depressing… I was so excited to get out of here, thinking I could get back to doing normal things but with a baby. I guess not 🙁

      1. It’s a personal decision. You may not do it at all. Or you may not do it until winter. It’s not fun. But for us it was worth it to avoid a flu or RSV hospitalization.

        1. Well, I certainly don’t want her back here sick, so if that’s what it takes, I’ll do it!

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