The NICU Thread - Page 3 — The Bump
November 2018 Moms

The NICU Thread

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Re: The NICU Thread

  • Yayyyy to read that it discharge is in site for the girls and hopefully Matthew soon! You guys are seriously my heroes!! It gives me all the feels coming here and checking up on the nicu babes!!
    nws
    highsteakswildrainbowmockingjay1
  • highsteakshighsteaks
    Seventh Anniversary 500 Love Its 1000 Comments First Answer
    member
    edited October 2018
    @wildrainbow how is Matthew? did the doctor let him take off his oxygen again?
  • @offtoneverland whoops! Glad you got to hold her though!!!
    nws
  • So, I had a minor heart attack tonight. The NP from NICU called me and I almost panicked that something was wrong with Matthew. She was calling to go over his echo. He had to have a repeat echo because of a blood vessel that normally disappears after birth is still present and open. They noticed it was still there and that the vessels leaving his heart are small/narrow. She said that it's all normal for some babies born preterm. We just have to follow up with the cardiologist in 6 to 8 weeks. Other than that, he is doing ok. He's back up to 1 liter and around 23% oxygen. I feel like we took a giant leap backward and I'm legit wondering if we will get out of NICU before his due date. I'm so tired. Emotionally, physically, mentally, I am worn out to my marrow. I'm trying not to worry about the echo and future ramifications of his heart. I won't lie, this has not been the best week so far. I'm gonna need a huge step forward to get some positivity back. Right now, I'm feeling a little defeated. 
  • @wildrainbow I’m so sorry. Sending hugs and hoping you get some positive news soon.
    Pregnancy Ticker

    wildrainbow
  • @wildrainbow so many hugs and sending all the love your guys way! I hope you get some good news ASAP! He is definitely a little fighter.
    nws
    wildrainbow
  • @wildrainbow Oh girl, I am so sorry for the setback. It's so frustrating when you see them making progress and then they go backwards. I'm so hopeful that the heart issue will go away in its own and that you don't have to worry about it one bit.
    Keep us updated on his progress today. We're here for you through thick and thin no matter what. Give that boy a talking to today and tell him it's time to come 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
    wildrainbow
  • @wildrainbow - I'm so sorry for the setback. Did the NP say whether she thought the narrowed vessels and needing to still be on oxygen were related? Praying for you and your sweet boy and I hope he can get back off the oxygen soon and his follow up with cardiology shows everything looks the way it should in 6-8 weeks. <3
    *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


    offtoneverlandwildrainbow
  • @wildrainbow stay strong momma :( I'm so sorry for the setback. Hope he has amazing progress soon <3

    LO arrived 11/9/2018!  We have a baby!
    --------------------------------
    Me: 31 | DH: 39
    Married: March 2016
    TTC #1/IUD out January 2017
    PCOS dx January 2018
    Medicated cycle 2.5mg Letrozole CD3-7 February 2018
    BFP 3/10/2018!!!! 16DPO Beta 1: 732 | 18DPO Beta 2: 1278
    -------------------------------

    TTGP December Siggy Co-Winner: Favorite Moments from Holiday Movies/TV 
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    offtoneverlandwildrainbow
  • @mockingjay1 No, she just assured me  it was all normal, whatever that means. I will ask today to see if they think it correlates.
    highsteaksmockingjay1
  • @wildrainbow No advice, but I'm thinking of you and Matthew and hoping and praying that everything turns around for the little guy.  

    Try to get some rest and keep your head up, you've got this. :heart:
    Lilypie First Birthday tickers
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    Our infertility journey (TW)
    ● IUI #1: BFN 
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    ● FET #2 (1 transferred): BFP!  BOY #3!

    wildrainbow
  • @highsteaks Did Elise and Emilia get discharged yesterday?! 

    @wildrainbow How are things? How is Matthew? 

    Question for you guys. How much time do you spend at the NICU compared to the time you spend at home with your older children? I feel like I'm constantly juggling my time and struggling to not feel guilty about it. When I'm with DD1 I'm always thinking about Sydney and feeling bad I'm not there. When I'm with Sydney I feel bad that I'm not with DD1 who recognizes my absence.
    We spend most of the daytime at the NICU while DD1 is at school, then go home in the late afternoon/evening. But then I feel guilty for not staying the night with Sydney at the NICU.
    I do what I can with Sydney while I'm there but I don't know. I just worry she's not going to know who I am since we don't stay all day long. But I don't have the energy to stay there all day.
    Sorry for the novel. I guess I'm just looking for some reassurance. 
    *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 sounds like our nicu schedules were the same. i’d go in the morning right after preschool drop off, and i’d try to be home for dinner and bedtime. sometimes i’d make it and sometimes i had late nights. it’s probably different for us because my girls were in nicu for being preemie and small, but i didn’t worry about trying to establish a bond with them—don’t get me wrong, i went there to care for them, but i always thought that the less i unnecessarily fuss with them the better off they were because they needed the rest to grow. honestly, between the two of them and the strict care time schedule, they probably only saw me while awake maybe one or 1.5 hours each a day.
    offtoneverlandwildrainbowashkee05
  • @highsteaks Hooray for being home! I'm sure things are hectic getting used to having twins, but I hope you get into the swing of things quickly. That's incredible that the staff at your hospital was so supportive of you during the car seat tests and helped you guys get home to be a family together. I'm so happy for you!

    Thanks for responding about your NICU schedule. It helps out have some perspective from someone who's been in the same place, because I'm constantly worrying that I'm doing something wrong. It's hard to balance. You're right, I try not to fuss with Sydney too much because she's been messed with and poked so much that sometimes it makes her grouchy. We got to hold her a lot yesterday though which was wonderful, and she did great! 
    *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
    highsteakscpow18wildrainbowmockingjay1
  • @offtoneverland oh yea! i noticed my girls would be grouchy too when i tried to hold them on those early long poke-filled days. 
  • @highsteaks YAY for the girls being home! What fantastic news <3

    LO arrived 11/9/2018!  We have a baby!
    --------------------------------
    Me: 31 | DH: 39
    Married: March 2016
    TTC #1/IUD out January 2017
    PCOS dx January 2018
    Medicated cycle 2.5mg Letrozole CD3-7 February 2018
    BFP 3/10/2018!!!! 16DPO Beta 1: 732 | 18DPO Beta 2: 1278
    -------------------------------

    TTGP December Siggy Co-Winner: Favorite Moments from Holiday Movies/TV 
    TTGP October Siggy Winner: Animals in Costume 



    highsteaks
  • @wildrainbow I wish I could LT your post 100 times. I'm so happy for you! Keep us posted on how it goes! 
    *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
    mockingjay1
  • That is the best news @wildrainbow!!
    *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


    wildrainbow
  • @wildrainbow YEY!!!!!! So happy for you and your family!!!!!!
    wildrainbow
  • @wildrainbow that is such great news!!!! My fingers are crossed!
    wildrainbow
  • @wildrainbow I'm so happy for you  :)
    *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
    wildrainbow
  • @offtoneverland How is Sydney? How are you?
  • @offtoneverland emilia has hydronephrosis too. the neonatologist mentioned it before discharge and said that her good kidney looks enlarged, but gave a cursory diagnosis. we have an appointment with the pediatric nephrologist on friday to figure out next steps for everything. she’s been on amoxicillin since just after birth to support her good kidney. i’m sad your Sydney is going through kidney problems too.
  • @highsteaks Sydney is on antibiotics too for the time being. Sorry to hear about Emilia's hydronephrosis as well. It's good that she seems to be doing well regardless though and it gives me hope that we will see a discharge in our future soon! I was researching hydronephrosis and it actually seems to be pretty common, so that helps me realize we're not in this alone.
    Good luck at the appointment on Friday! Let me know how it goes. 
    *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
    highsteaks
  • @offtoneverland when i spoke to the nephrologist over the phone a few months ago, he said that he only sees reflux so severe or persistant that it needs major surgical intervention in maybe only 5% of his patients. hope that gives you some reassurance like it does me.
    offtoneverlandcpow18
  • @highsteaks Out of curiosity, did they diagnose Emilia's hydronephrosis during the anatomy scan? The weird thing about all of this is that none of Sydney's issues were seen during the anatomy scan! I know they're not perfect and her issues may have developed later, but it's still fairly frustrating.
    *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
  • highsteakshighsteaks
    Seventh Anniversary 500 Love Its 1000 Comments First Answer
    member
    edited November 2018
    @offtoneverland the hydronephrosis was only seen at a renal ultrasound two-ish weeks after emilia’s birth. she had an ultrasound right after birth as well and nobody mentioned hydronephrosis (that i can recall) at that time.

     it’s my understanding that hydronephrosis is a symptom/result of her multicystic dysplastic kidney— her (right, i think) kidney is full of cysts that formed during the first half of my pregnancy, and is completely useless. they discovered the multicystic dysplastic kidney at the anatomy scan. the other kidney looked as normal as they could tell at the scan and all other prenatal ultrasounds that looked at it. the nephrologist  (during our phone convo) said that the healthy kidney will naturally enlarge over time to compensate for the bad kidney not doing its job. what he will look out for periodically is reflux, that back-up of urine in the good kidney which (like you know) can also cause enlargement and potentially infection. so, the kidney enlargement in emilia’s case could be either the good kidney doing what it should be doing (compensatory), or hydronephrosis as the neonatologist thinks. hopefully we’ll find out for sure on friday.

    sorry that’s more info than you asked for, but just wanted to clarify any differences between emilia’s case and Sydney’s case so you can make sense of it all.
    offtoneverland
  • @highsteaks Thank you for all the information! Our girls are a lot alike! Not in the exact same ways, but they both have one functioning kidney. A friend of mine has a daughter with one functioning kidney as well because she has cysts in her other kidney like Emilia does. Hopefully Emilia does not actually have hydronephrosis, but if she does, at least it does not sound like a huge deal. I would of course prefer that our girls had normal kidneys, but I'm thankful it's not a major life changing problem.

    Question for you and @wildrainbow about eating...Did any of your babies have problems learning to eat? Sydney has been getting breastmilk for like 1.5 weeks now via bottle and she's still having trouble. She's just tired a lot, so sometimes she'll drink some of her bottle and other times she won't drink any. She has never drank the whole bottle. We did bf yesterday for the first time for about 10 minutes.
    They feed her every 3 hours around the clock in the NICU. I asked the NP this morning if we could do a different schedule if she's too sleepy and not hungry, but they said no. They said if she's not hungry, we'll just put the milk through her tube. But I'm feeling so frustrated today. The only thing keeping us here is her eating. So if we keep just putting it down her nose we're never going to get out of here. What did you guys do to get your kids to eat? I just want to be done at the NICU and I don't understand why they have to feed her every 3 hours if she's not hungry. I want to go 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
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