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I wouldn't wish the NICU on anyone.

devinjonesrndevinjonesrn member
in Preemies

Seriously the most trying thing I've ever experienced.  As if the NICU isn't enough add some crazy hormones that make me cry at the drop of a hat and this whole thing feels like a cruel, cruel trick.

I love these little people so much its insane.  I look at them sometimes and the tears just flow because they are so sweet and tiny and helpless, and I'm helpless, and I want to do something for them.  I hate that they lay there all day unless I'm holding them, which is limited due to bili lights, and I long for the day that I can just go in and scoop em up and snuggle without the constant fear and worry.  

We got the brain US reports today and DS has a Grade II IVH on the Left and DD has a Grade I IVH on the R.  I've read that the possibility of developmental delays stays the same as just being preemies alone, but I know I'm going to be sick about it until we get the repeat in a week.  

DS has started a nice bout of  A's and B's and they upped his caffiene today.  They are going to watch him closely for changes and hopefully he has nothing to indicate an infection, so that we can just write them off as a symptom of prematurity.  Not excited about the idea of a culture work up, namely the lumbar puncture part of it.  

DD is slightly acidotic, so they're watching closely for a patent PDA, infection etc.  Hopefully this is just another symptom of prematurity, and immature kidneys leaking bicarb.   

Thanks for giving me an outlet to get this stuff out.  It really is an awful, awful thing having children in the NICU.  Praying constantly for peace, as I know this is all in God's hands, and when I feel helpless I just try to remember that he loves these babies even more than DH and I do.   

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Re: I wouldn't wish the NICU on anyone.

  • njdcgirlnjdcgirl member
    imagedevinjonesrn:

    Seriously the most trying thing I've ever experienced.  As if the NICU isn't enough add some crazy hormones that make me cry at the drop of a hat and this whole thing feels like a cruel, cruel trick.   

    I agree. Completely.

    Hang in there - I'm sure you are already sick of hearing "it's a rollercoaster" but I hope you have lots of up days coming!

    The day I found out about my sons Grade 2 IVH was one of the most difficult for me (mentally) in his entire 147 day stay.  It is such a helpless feeling, and I just remember being crushed.  That being said, it resolved itself within a few weeks (I think it took 2 u/s for it to completely resolve, so don't panic if it is still there next week) and there is no lingering damage that we can tell from additional u/s, MRI around his discharge, or developmentally.

    Again - just take one day at a time, and absolutely keep praying!

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  • Leigh71Leigh71

    HUGS for you.

    I'm a mom of 2 NICU grads, and it is a living hell.  Everything in your post, we went thru too.

    My DD Kate had a grade II IVH... it took a while to resolve.  I worried each and every day.  My DD Lauren had 2 heart defects.  1 resolved, and she still has a PFO.  She rec'd meds to close her PDA.  The heart issue made me the most stressed and most sad.  It still does. 

    Kate had Bs....and needed caffeine.  I called it her daily dose of Diet Coke.  I prayed a lot.  And the only comfort was during Kangaroo.  I felt like my DH didn't really feel all the tough things I was feeling...but I'm sure that was all of my hormones.   Each night when I would come home from the hospital, and pass by their nursery, i would cry.  It was a very hard time in my life.  Post here often.  Everyone on this board is very supportive. 

    1 thing that helped me, was I made "photo" signs.  I went to Michaels and bought two 8x10 clear acrylic frames.  In them I put some cute paper as a background, and a pic of each of our girls.  I used the letter stickers and spelled out their names.  I looked at this each time I pumped, in the NICU, and in their nursery at home.  It made me feel like they were with me.  I also made 2 5x7 signs.  The nurses liked them.  They were very simple... just cute background paper, and the letter stickers again, spelling out their names.  I didn't want them to keep calling them Baby A and Baby B.  The whole staff warmed up to the girls and called them by name.  It comforted me, and let me know they were getting to know my girls by name/personality.  I also taped up a prayer card in their isolette/warmers, and a small wallet sized pic of DH and I on our wedding day.  the staff could "see" who we were...and get to know us.  Hugs again.

    TTC for 12 years. m/c 2009. BFP on New Year's 2010. Lilypie Second Birthday tickers
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  • ruthiewithruthiewith
    You're absolutely right - having babies in the NICU is awful.  It's a roller coaster every day and physically and emotionally draining.  My DS1 got a Level 3 IVH at 2 weeks and it crushed me to hear the news.  He had a spinal tap, which drained the fluid and resolved the bleed.  He's 2 years old and doing great now!  Both DS1 and DS2 were on caffeine for awhile and it helped them quite a bit.  My emotions were all over the place and I would cry and then be angry and frustrated and happy all within a couple of hours.  It's totally normal and you're doing a great job being there for them!  T&Ps to you and your babies.
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  • twobytwo2010twobytwo2010
    I missed that you had your babies. Congrats.. and it is awful having them in NICU. It will make you a better, stronger person and you will see things that you use to think was a problem now isn't really that big of a problem. Now that mine have been home for about 10months they are growing great. I am not a crier at all, but man when they were born and months after I cried with everything. All it took was a wrong word or seeing another baby that wasn't sick. Good Luck with everything they really are in one of the best places.
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  • beyogabeyoga member
    Hi.  My DS has a grade 3 IVH that has been stable for months but has never resolved.  Have you experienced any delays or difficulties due to the bleed?  TIA
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  • Mrs.JBWMrs.JBW

    {{HUGS}}

    I noticed when your babies were born and I hit a wall when my daughter was about a week old.  I hated having to drive to see her or calling to ask about her - when I wanted her HOME with us.  I can remember one entire day, I just sobbed over "my loss" I wanted everything to be normal and being a NICU mom wasn't part of my plan.  I went through a period of being mad at really pregnant women - why them and why not me?

    These days are tough, someday you will look back on them and think "how did I / we do it?"  Just keep going, one day at a time.

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