july 29- rude awakening

sorry for the delay in posting pictures. it is just a bit of a hassle for me... and i'm feeling a bit overwhelmed today.

what an adorable outfit! my favorite!
achoo! mom caught me mid-sneeze!

we had the family meeting today. (even though thadd was gone. and will be gone for roughly 2 more weeks.we'll be having these more frequently when he gets back.) apparently i was living in la la land. here are the cliff notes:

  • when can we go back up on nasal cannula sprints? ween down the cpap pressure? (from 6 to 5)
    • when they see a trend in less oxygen requirement
  • situation with lungs?
    • expect her to be in the nicu at least 2 more months... possibly need to go home on oxygen.
    • when can we start back on the non-nutritive sucking?
      • at the nurses discretion
    • is it possible to breastfeed a feeding while sprinting? (since it seems she may need the cpap for a while longer?)
      • yes. as she gets the non-nutritive sucking down, we can slowly add in a feeding while she sprints.
      • when can we give her feeds by gravity? (right now she gets them over an hour.)
        • they're going to start weening that down. she should start getting them over 30 minutes tomorrow.
      overall health-
      • why the repeated newborn screens? (the one they took today makes #4!)
        • #3 had a processing problem. nothing with wren. they're only taking them when they've drawn blood for another reason- not heel sticking just for that.
      • hematocrit issues?
        • should resolve itself. but, by giving her the transfusion yesterday, they reset her clock. delaying her own production of red blood cells by a bit more time.
      • results so far?
        • immature eyes. which we expect because she's immature- right?
        • ROP stage 2 zone 2. are you shocked? did you read my last post on this issue and remember that the doctor told me JUST "immature eyes"? because he SURE did! and then none of the other doctors felt the need to pass on that information. neither of her primary nurses knew either.
        • if her ROP gets any worse she will need laser surgery. no doubt. it needs to stay where it is or get better in order to avoid the laser.
      • deferred schedule-
        • they definitely didn't like it. and insisted that we get the shots before she leaves the NICU. i told them we had decided to wait until she got bigger. (they did confirm that the same dosage that is given to 15lb babies is given to 3lb babies. that's what the FDA and AAP recommend. so people do it.)
        • the synagis is actually an antibody, not a preserved virus. so instead of basically infecting someone, and causing their body to make antibodies, they inject the antibody to start with. we've decided, since it is an antibody, and the risk of contracting RSV is so high, and the risk of serious side effects, that we will go ahead and give it to her. it is done monthly, and has to be done throughout the whole season.
      post nicu- (this is the part i never should have asked about!)
      • wren will probably need occupational therapy (OT), physical therapy (PT), and speech therapy (ST)
      • later, the doctor mentioned her chronic lung disease (CLD). i'd never heard that she had it. one of the other attendings had said that he wouldn't say that she had it.. that was just a few weeks ago. :(
      • she's at risk for problems related to ROP, strabismus, hearing loss, cerebral palsy, and some level of mental retardation. we should know by age 3 if she's out of the woods on these issues.
      • the doctor told me outright that i shouldn't work. (not that i was going to, or want to, or considered it.) she said that having wren is going to be a full time job. between her therapy appointments (OT, PT, ST etc), and her pediatrician check-ups, and her developmental pediatrician check-ups, and her ophthalmologist/optometrist. not to mention what i will have to do with her at home in our "free" time. i can't be the diapering, feeding mom. i have to be the reading, diapering, feeding, teaching, challenging, talking, mom. she said that even children with "delays" can be bumped up by just having a strong parent involvement in therapy. (basically making our home life one big developmental playground for her.)
      • we will be enrolled in army exceptional family member program. what i know about that i learned from google here.
      • wren is eligible for state aid wherever we live due to her "special needs".
      • they're going to do all the research for our upcoming moves to coordinate with tricare and find doctors and therapists ahead of time. they're also going to coordinate getting the synagis while we're home on leave.
      so, that was my day. i broke down crying toward the end.. with all the talk of "special needs" and all the doctors and therapies... it was just too much. i don't know if i can do two more months... i just don't know.

      on a good note. she is still a temperature rockstar. :) keeping her temp up in her open crib now. i'm so proud of her for doing so good with that. (if we could just get her off that stupid cpap!)
      in her big girl crib! (i promise, in the picture above, she's really under all those beanie babies!)

      we got to do the non-nutritive today. she latched! yay! she got some milk, but not much. (i pumped to "empty" beforehand.) it was the strangest feeling! for those of you nicu mommies reading this that haven't had the chance to put your baby to breast- keep pumping! it is totally worth it when they get to that point.
      her oxygen needs haven't been bad at all! this morning she was in the high 20s. last night was great too. today on cannula we got her down to about 45, and had to put her back up to 50 for the last little bit.

      please keep little wren in your prayers. i thought we were almost out of the woods... but she's got such a long road ahead.


      Anonymous said...

      hi there,
      your blog caught my attention because you sound just like me several months ago. I have a surviving twin baby girl born 7 months ago at 24 weeks. She was 1 pound 7 oz at birth stayed in the nicu for 5 months and has now been home for 2 months and doing well. Your meeting sounded a lot like ours in hte beginning. They cannot tell you what you want to hear-that she will come home and be ok. What i can tell you is that these babies are fighters. Caroline has been through 3 abdominal surgeries, laser eye surgery, transfusions, intubated for over 2 months, etc. Believe in your daughter and your ability to take care of her. That is what got me through. Try not to get caught up in all the numbers-thats what the nurses and docs are there for. I wish you all the best and congrats on your beautiful daughter. If you ever need an ear to listen for whatever reason my email is cc.rn@hotmail.com. Best wishes from a fellow micro-preemie mom Cathy

      The Brays said...

      Hi Charla,
      So sorry that Thadd has to be gone right now; we'll be praying extra hard for you to carry on with everything. Wren is beautiful; love the "big girl" outfits!!
      Hang in there -- God's definitely there for you to hang on to. I love your thoughts about Job; you are right on target. We love you guys and can't wait to read your next update. Ya'll take care!
      Sharon, Stu and boys

      wrensmommy said...

      thanks for the support. that was a really hard day... we're just hoping and praying for her to be happy and healthy.