The NICU Thread - Page 4 — The Bump
November 2018 Moms

The NICU Thread

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Re: The NICU Thread

  • @offtoneverland everything @wildrainbow said i also heard from my girls’ nicu nurses, too. there are tricks to get a sleepy baby to eat more, like open their clothes to the air to wake them up a bit, or tickle their chins. i will say that i felt like we went from “we’ll be here forever” to “oh geez we’re getting out; i’m not ready!” in the blink of an eye. so, Sydney could surprise everyone and be out in time for your family’s visit, fingers crossed.
    offtoneverlandwildrainbowjosie12367ftm_jen
  • @offtoneverland With Tristan it was like one day the light bulb just went on.  The nurse said that it common for that to happen, suddenly it just clicks.  One day he was eating less than half of his feeds by mouth and the next he ate 100% of his feeds by mouth (and then the next day pulled out his own NG tube because apparently he was like "I'm good I don't need this anymore").  I hope it clicks for Sydney super soon!
    Lilypie Premature Baby tickers

    Infertility Journey
    Married: 08/09/2013; TTC #1 (Since January 2014)

    Me: 29, possible PCOS and Septate Uterus (Septum removed in November 2017)
    DH: 29, MFI (Low Count and Low Motility)

    July 2017 - IUI #1 - Letrozole 2.5 mg, no trigger, Prometrium 100 mg 2x a day - BFN
    August 2017 - IUI #2 - Letrozole 2.5 mg, no trigger, Prometrium 100 mg 2x a day - BFN
    September 2017 - IUI #3 - Letrozole 2.5 mg, no trigger, Prometrium 100 mg 2x a day - BFN
    November 2017 - Uterine Septum removed
    December 2017 - IVF Consultation
    January 2018 - IVF - Retrieval 1/24 - 2 Day 3 embryos (1 transferred fresh, 1 frozen) and 2 Day 5 embryos frozen
    February 2018 - Fresh Transfer - Transfer 1/27 (1 day 3 embryo) - BFN
    March 2018 - FET - Transfer 3/2 (1 day 5 embryo) - BFP!  1st beta (10dp5dt) - 101; 2nd beta (17dp5dt) - 3061!

    March 2018 - Remaining embryos lost in malfunction.
    wildrainbowofftoneverlandftm_jen
  • @offtoneverland - you have every right to feel the way you do. It’s hard and it sucks and it’s not fair especially when it was completely unplanned. I’ve watched parents work thru the same feelings, and I know I’d feel the same if my baby was in the nicu. @wildrainbow is completely right, as much as it sucks she’s recovering from surgery and so her energy is being used for that right now. I really hope she is able to eat and go home soon. I think about you guys a lot. I was telling DH about Sydney and how it seems so unfair because you are such a sweet person (not that anyone deserves to go through that). Continued prayers for you, Sydney, and your family. 
    *TW*
    Me:32 DH:32
    Dx: PCOS - on metformin
    DS born 11/2014
    TTC #2
    5 failed IUIs
    1 IUI ending in mc & d&c at 9.5w - girl with trisomy 16
    Pursuing IVF with CCRM - ODWU done - IVF set for May-June
    Surprise BFP 3/5 - Rainbow baby due 11/9/18 - Team Green


    wildrainbowofftoneverlandjosie12367ftm_jen
  • @offtoneverland the hospital did not send over the actual renal ultrasound pics, so the nephrologist was just going off of their notes. there was some swelling in the good kidney at the ultrasound immediately after birth, and the same swelling noted at the 2.5 week ultrasound. emilia will go back to the nephrologist in three months, and will have another renal ultrasound just prior. then probably a contrast dye test after that appointment to see if there is reflux. she’ll stay on low dose antibiotics until we can confirm that there isn’t reflux. he also said if there is reflux, that she’ll likely outgrow it at some point. as far as medicine and solid food (when we get there) we don’t have to do anything differently than we’ll do with her twin. we’ll have to request a urinalysis when she has a fever to make sure she doesn’t have a urinary tract infection—any infection can scar/damage the good kidney’s tissue. i think that was most of the important points. 
  • @offtoneverland happy to hear Sydney is eating so well today! fingers crossed that her diacharge is going to be sooner than you expect! and yes, it’s a VCUG test (i was just too tired to remember the letters in order). the doc wants to wait until she’s big enough that her birth hospital can handle the catheterization. if we wanted to do it asap, we’d have to drive 2.5 hours to the pediatric hospital at UVA; but i’m good with waiting.
    offtoneverland
  • @offtoneverland I'm so happy Sydney seems to be eating so well!! FX that terms continues and your sweet babe will be home soon!!
    offtoneverland
  • @offtoneverland How are you? How is Sydney?
  • @wildrainbow I'm doing okay. Sydney did well on her bottles for about a day and then stopped drinking them all again, so she got the NG tube back. I didn't handle it very well yesterday and cried all day at the hospital. Today I sent MH to the hospital and it will be my first day not seeing Sydney, but I really couldn't deal with any more disappointment and I was starting to just feel really angry about everything. I had been getting so hopeful that she'd be on her way home by now, but she's not and I'm really heartbroken. Tomorrow will be 3 weeks. :heartbreak: 
    I feel guilty because I should be thankful that she's healthy and fine, and I am, but I'm tired of hospitals and I want her home with us. But instead they're transferring her to another hospital today or tomorrow and who knows how long we'll be there. I never realized that they could keep babies for so long who don't need any medical help. She's not even hooked up to anything anymore aside from the NG tube and the oxygen monitor on her foot, but they take that off during the day. So it feels so silly to have her in a hospital just to teach her to drink her bottles. I mean, I get it. She needs to eat and be healthy. But babies are sent home from the hospital with their moms every day when they don't yet know how to eat and I'm jealous that we can't do that too. 
    I've been lounging around the house today cleaning, watching TV, and eating lots of leftover Halloween candy. I feel bad that I won't see Sydney today, but I also really needed a day to myself. 
    *TW*
    Me: 31 | DH: 33
    DD1: 8/2014  <3
    TTC #2: 6/2017
    BFP 8/3/2017 | CP 8/4
    BFP 10/16/2017 | CP 10/21
    BFP 12/18/2017 | CP 12/28
    BFP 2/15/2018 | EDD: November 2nd | It's a girl!
    DD2: 10/2018  <3
    highsteaksftm_jen
  • hugs, @offtoneverland. i’m glad you’re taking the day for yourself; you’ve earned it.
    offtoneverland
  • I feel 100 times better after taking a day off yesterday. I'm at the hospital cuddling my girl right now. The occupational therapist is coming by at noon to assess if we should be transported to the other hospital to help her learn to eat better or if we could be sent home with the NG tube. I'm nervous at the thought of going home with the tube, but I'll make it work if that's what we need to do to get her home. 
    *TW*
    Me: 31 | DH: 33
    DD1: 8/2014  <3
    TTC #2: 6/2017
    BFP 8/3/2017 | CP 8/4
    BFP 10/16/2017 | CP 10/21
    BFP 12/18/2017 | CP 12/28
    BFP 2/15/2018 | EDD: November 2nd | It's a girl!
    DD2: 10/2018  <3
    MojieJosuzycupcakehighsteaksarieselle
  • @offtoneverland I'm glad you are better! Have the OT check her for a tongue or lip tie. That could be what is hindering her. Are you BF? If she does have one, you can get it cut and that should really help. I hope the OT has positive news for you!
    offtoneverland
  • @wildrainbow They already checked her mouth and tongue but I can ask again to make sure. She seems to drink well when she's hungry and awake, but I think the biggest issue seems to be that she just gets really sleepy. 
    We've only tried breastfeeding a few times so far. I've mostly just stuck with the bottle because it was working well and I didn't want to hinder her by trying something new. 
    *TW*
    Me: 31 | DH: 33
    DD1: 8/2014  <3
    TTC #2: 6/2017
    BFP 8/3/2017 | CP 8/4
    BFP 10/16/2017 | CP 10/21
    BFP 12/18/2017 | CP 12/28
    BFP 2/15/2018 | EDD: November 2nd | It's a girl!
    DD2: 10/2018  <3
    suzycupcake
  • @offtoneverland just want to say don’t feek guilty! If you’re not taking care of YOU, you’re no good to her! Also I love you and lmk if you need anything 
    nws
    offtoneverland
  • Thank you @ashkee05 and everyone else.  <3 The OT is going to have a speech therapist take a look at Sydney to assess if there are any problems with her swallow. She didn't seem concerned though. She said Sydney did a great job communicating to us when she was tired and didn't want anymore milk from the bottle. Really I think her biggest issue is just that she's still recovering and tired.
    I'm feeling much better and @wildrainbow -- the advice you gave me about wanting Sydney to come home healthy and thriving is really helping. The goal is to get her big and strong and healthy, so we'll do what it takes to get her there, even if it takes a while longer. 
    *TW*
    Me: 31 | DH: 33
    DD1: 8/2014  <3
    TTC #2: 6/2017
    BFP 8/3/2017 | CP 8/4
    BFP 10/16/2017 | CP 10/21
    BFP 12/18/2017 | CP 12/28
    BFP 2/15/2018 | EDD: November 2nd | It's a girl!
    DD2: 10/2018  <3
    wildrainbowhighsteakscatlady2015arieselle
  • @offtoneverland I'm glad to see you took a day to get yourself back on track. As everyone has already said sydney just needs to heal and she's on that path. Keep your head up mama. She will be eating like a champ and you'll be able to put all of this behind you soon!
    offtoneverland
  • @offtoneverland yay! great news! i’m surprised she was on a preemie nipple... is that slower than the slow flow and thus more work for her? emilia, who had her ng tube longer, had the slowest flow nipple for awhile because otherwise she’d leak all the milk out of her mouth, but when she was ready for the next flow up she started to eat much better.
  • @highsteaks She'd been using the slow flow nipple (the green one - are those colors standard in all NICUs?) for a few days, but then OT said she was struggling too much and switched her to the purple nipple - the super slow flow one. When we moved to the infant floor, the speech pathologist switched her to the Dr. Brown's preemie bottle, which is slower than the green nipple but faster than the purple. Then the OT said she was working too hard and switched her back to the green one.
    Kind of pissed at the nurse today though because she used the Dr. Brown's bottle this morning and Sydney only drank 40 out of 70ccs. I guess she didn't check to see which bottle to use.  :'(
    *TW*
    Me: 31 | DH: 33
    DD1: 8/2014  <3
    TTC #2: 6/2017
    BFP 8/3/2017 | CP 8/4
    BFP 10/16/2017 | CP 10/21
    BFP 12/18/2017 | CP 12/28
    BFP 2/15/2018 | EDD: November 2nd | It's a girl!
    DD2: 10/2018  <3
  • @offtoneverland don’t know if they are standard, but the green ring was the slow flow at our nicu, and the blue was standard (0mo); they were enfamil nipples ith. i can definitely see why you’d be frustrated—that’s a lot of different people/groups weighing in on how to feed Sydney. I hope the new hospital will be better about consistency.
  • Well, one step forward and five steps back. She's back to barely even finishing half her bottles again so they can't fortify the breastmilk. Ughhhhhhh. We're going to be here forever. 
    *TW*
    Me: 31 | DH: 33
    DD1: 8/2014  <3
    TTC #2: 6/2017
    BFP 8/3/2017 | CP 8/4
    BFP 10/16/2017 | CP 10/21
    BFP 12/18/2017 | CP 12/28
    BFP 2/15/2018 | EDD: November 2nd | It's a girl!
    DD2: 10/2018  <3
  • i’m so sincerely sorry @offtoneverland. that is very frustrating.
    offtoneverland
  • @offtoneverland ((hugs)) I know that's so frustrating. 
    offtoneverland
  • @offtoneverland I'm sorry and definitely understand your frustration. Try to keep your head up and remember she's where she needs to be right now (as much as it sucks!). You won't be there forever, that I can promise you!
    offtoneverland
  • Thanks everyone! @ftm_jen You're right that she's where she needs to be but it's so frustrating sometimes, especially now with holidays coming up. But I need to remind myself of that. 

    Small update: They're letting S go 24 hours without the NG tube. Instead of feeds every 3 hours, they're going to feed her on demand (but not less than every 3 hours). Fingers crossed. 
    *TW*
    Me: 31 | DH: 33
    DD1: 8/2014  <3
    TTC #2: 6/2017
    BFP 8/3/2017 | CP 8/4
    BFP 10/16/2017 | CP 10/21
    BFP 12/18/2017 | CP 12/28
    BFP 2/15/2018 | EDD: November 2nd | It's a girl!
    DD2: 10/2018  <3
    wildrainbowkrash_highsteaks
  • @offtoneverland ; I hope that works for her! Do they let you do skin to skin with her? I know for M it helped stimulate his appetite when he was slow on his bottles. ((Hugs))love. In case no one tells you, you are amazing and strong, even if it doesn't feel like it.
    highsteakscpow18
  • @offtoneverland It's weird to me that they don't fortify the breast milk all the time.  Even when Tristan was only getting milk through the tube it was still fortified.  First it was fortified to 22 cal then to 24 cal.  Even with him being home 120 ml of milk a day is fortified (until he's 8 lbs).  Hopefully she does well today!   <3 
    Lilypie Premature Baby tickers

    Infertility Journey
    Married: 08/09/2013; TTC #1 (Since January 2014)

    Me: 29, possible PCOS and Septate Uterus (Septum removed in November 2017)
    DH: 29, MFI (Low Count and Low Motility)

    July 2017 - IUI #1 - Letrozole 2.5 mg, no trigger, Prometrium 100 mg 2x a day - BFN
    August 2017 - IUI #2 - Letrozole 2.5 mg, no trigger, Prometrium 100 mg 2x a day - BFN
    September 2017 - IUI #3 - Letrozole 2.5 mg, no trigger, Prometrium 100 mg 2x a day - BFN
    November 2017 - Uterine Septum removed
    December 2017 - IVF Consultation
    January 2018 - IVF - Retrieval 1/24 - 2 Day 3 embryos (1 transferred fresh, 1 frozen) and 2 Day 5 embryos frozen
    February 2018 - Fresh Transfer - Transfer 1/27 (1 day 3 embryo) - BFN
    March 2018 - FET - Transfer 3/2 (1 day 5 embryo) - BFP!  1st beta (10dp5dt) - 101; 2nd beta (17dp5dt) - 3061!

    March 2018 - Remaining embryos lost in malfunction.
  • @offtoneverland


    that is the BESTEST news!!!!!!!! legit tears over here for you. it’s been so long and i’m so happy that she’s finally going home with you!
    arieselleofftoneverlandlurvleybunchococonuts
  • @offtoneverland Omg! I'm crying right now! Best. News. Ever!! I'm so excited for you!
    offtoneverland
  • Thank you so much! I just can't believe it. The nurse went over some of the NG tube stuff with us today and showed us how to place it and check it's correct. Tomorrow they'll take out the tube and have us place it to make sure we can do it. I'm pretty nervous but the nurse said it's easy.
    She also said it can take a while to get all the medical equipment ordered and verified with insurance, so not to be too disappointed if we can't actually take her home tomorrow. But we're meeting with the doctors during rounds early tomorrow and will get it all figured out. I'm just happy at this point to *finally* have an estimated discharge date after all this time. 
    *TW*
    Me: 31 | DH: 33
    DD1: 8/2014  <3
    TTC #2: 6/2017
    BFP 8/3/2017 | CP 8/4
    BFP 10/16/2017 | CP 10/21
    BFP 12/18/2017 | CP 12/28
    BFP 2/15/2018 | EDD: November 2nd | It's a girl!
    DD2: 10/2018  <3
    highsteakswildrainbowmockingjay1
  • @offtoneverland OMG!  That's so exciting!!  I'm so happy for you!!
    Lilypie Premature Baby tickers

    Infertility Journey
    Married: 08/09/2013; TTC #1 (Since January 2014)

    Me: 29, possible PCOS and Septate Uterus (Septum removed in November 2017)
    DH: 29, MFI (Low Count and Low Motility)

    July 2017 - IUI #1 - Letrozole 2.5 mg, no trigger, Prometrium 100 mg 2x a day - BFN
    August 2017 - IUI #2 - Letrozole 2.5 mg, no trigger, Prometrium 100 mg 2x a day - BFN
    September 2017 - IUI #3 - Letrozole 2.5 mg, no trigger, Prometrium 100 mg 2x a day - BFN
    November 2017 - Uterine Septum removed
    December 2017 - IVF Consultation
    January 2018 - IVF - Retrieval 1/24 - 2 Day 3 embryos (1 transferred fresh, 1 frozen) and 2 Day 5 embryos frozen
    February 2018 - Fresh Transfer - Transfer 1/27 (1 day 3 embryo) - BFN
    March 2018 - FET - Transfer 3/2 (1 day 5 embryo) - BFP!  1st beta (10dp5dt) - 101; 2nd beta (17dp5dt) - 3061!

    March 2018 - Remaining embryos lost in malfunction.
    offtoneverland
  • that is so wonderful to hear @offtoneverland! not surprised one bit that she’s doing much better in the comfort of home. glad that it sounds like you all are getting a bit of rest. yay baby Sydney!
    offtoneverland
  • *lurk* @offtoneverland This is fantastic news! <3 <3 <3 
    People think we become mothers when we give birth but the truth is we become mothers the moment we start calling our babies to us in our thoughts, dreams and prayers. Some paths are short and some are so long that you can easily forget where you were headed.

    How I feel all of the time.
    My 7 Year Journey ***Tw in spoiler***
    IVF
    IVF #1 - September 2018; Follistim, Menopur, Cetrotide & Lupron/HCG combo trigger; PGS; ICSI
    Back on Levothyroxine
    FET #1 - October 2018; cancelled, all PGS aneuploid
    FET #1 - November 30th, transferred anyway
    Wondfo BFP 5dp5dt, CB Digi 6dpt, 
    1st Beta on 7dpt 93
    2nd Beta on 10dpt 510!

    TTC #1 since 2011. Tried for 5 years before we knew there was a one year rule.
    Diag w/MS 2016; w/PCOS & IF 2017
    New RE 2018; PCOS diagnosis taken away, IF due to ovary adhesions, but prev. RE insists PCOS IF

    IUI
    IUI #1 July 2017 w/100mg Clo+trigger; BFN; benched w/big cysts
    IUI #2 October 2017 w/50mg Clo+trigger; BFN; benched w/big cysts
    IUI #3 February 2018 w/5mg Femara+trigger; low P
    BFP February; mc March; Subclinical hypothyroid started Levothyroxine 
    IUI #4 March 2018 w/7.5mg Femara+trigger; BFN
    Medicated cycle & TI April 2018 w/7.5mg Femara+trigger; BFN
    Tried several cycles on our own; all BFN
     
    offtoneverland
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