Preemies

Breaking point

My little Delilah was born May 23, 5 weeks early at 34 weeks. We have been in the NICU for 2 weeks now and today has been a breaking point for me. The traveling back and forth trying to keep up with an ongoing outside life while trying to keep it together and spend every moment possible with her is becoming harder and more unrealistic everyday. So many people have and are experiencing the same thing but I just don't see the light at the end if the tunnel. How do these families keep it going??? :


All of your posts help so much. I know others have it worse but it helps knowing I'm not the only one when its so lonely. I'm trying to focus one day at a time and not when she'll be home. Thanks for the support, it's so appreciated.

Re: Breaking point

  • I'm so sorry that you are going through this. Every preemie parent has hit that point. My best advice is to only do what you absolutely NEED or WANT to do. Anything else, let it go. Your friends or other obligations will understand. While dd was in the NICU I visited, ate, pumped, and slept. There were days where those were the only things that happened. If people have offered to help, let them. If you need a break from the NICU, take one. It is ok to have a shorter visit, or skip a visit so you can rest.

    How is LO doing? Is she close to coming home? I found it was harder the closer we got to bringing her home. The closer she was, the more frustrating it all felt because we were almost, but not quite at the end.
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  • +ASH++ASH+ member

    My advice: cry. Cry as much as you need to when you hit that point. Let it all out. And then pick yourself up and continue to take it one day at a time. 

    I'm so sorry this is so hard for you. I know how draining it can be - I was two hours away from my family when I went through it, but it will be a memory soon. My little girl was born at 33 weeks and we were there for 33 days. Looking back, that's not a lot in comparison to others, but when you're living it, it's hard to get through each hour at times.

    Focus on your beautiful baby and know that even if you can't see it, you'll be home with her when she's ready.  

    DS1 - 9; DS2 - 6; Angel - May 10, 2011; Baby Girl - Due May 19, 2013
  • I agree with pp that the closer you get to coming home the harder it is. Not just because of time but because you start to think they don't need to be there and can be home and it feels unfair and like they are just dragging their feet At least to me. Looking back I know they did everything in his best interest and not mine. That was what they were supposed to do. Even if I wanted them to let him come home thru couldn't until he was ready. But that was frustrating.

    Also don't beat yourself up if you need to make some days shorter in the nicu for your sanity. No one is timing you but you.
    imageimage

    Our little hippo was as impatient as mom!

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    Hoping for a full 40 weeks!! 

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  • Our DD was born at 34 weeks, this Monday.  She is currently on a vent and has other issues.  It seems like every time we speak with the neo doc, something new comes up.  It is hard.

    I had a planned c section due to vasa previa.  I knew since week 20, that our LO would be a preemie.  I don't think I did a good enough job preparing myself on what to expect.  I have a couple of friends with micro preemies, and all of them forecasted minimal complications and a short NICU stay with our 34 weeker.  I was kind of taken by surprise.

    i wish only the best for you and your LO.

    image
    DOR and AMA
    2/12-5/12: 4 IUI cycles = all BFN;
    7/12: DE IVF # 1 (with ICSI)- 20R, 16M, 14F, 5DT of 2 blasts; 6 frosties = BFN;
    Lupus anticoagulant initially high, then found to be normal on hematology consult;
    Follow up testing in September all clear;
    Started synthroid for "high normal" TSH;
    FET # 1- late October 2012- BFP on FRER; beta # 1- 21(low), beta # 2- 48 (still low), beta # 3- 132, beta # 4- 1,293; beta # 5- 5,606; last beta- over 100,000. First u/s 11/21- heard heartbeat
    12/12- Officially an OB patient!
    Level 2 ultrasound at 20 weeks shows vasa previa and VCI
    Referral to MFM and mandatory c section for delivery
    Beautiful baby girl born at 34 weeks
    Finally home after 15 day NICU stay!
    Trying for sibling: FET # 2- May 2014; beta 5/31, BFN
    FET #3, early July 2014; beta 7/14, BFN
    DE IVF # 2- August 2014; 14R, 13M, 11F, 5dt of 2 blasts (3 AA), 5 frosties = BFN
    FET #4- December 2014, yet another BFN

    Dr. KK work up shows borderline uterine blood flow, elevated NK cells, and MTHFR mutation (homozygous for c677t)

    Added baby aspirin, prednisone, supplements, Metanx, and intralipids

    Switched to large clinic for final attempt; had endometrial receptivity testing in January; FET March 2015 = yet another BFN

    Likely OAD- NBC

  • DD was born on the 24th at 33 weeks and we hit a breaking point this past Sunday. It felt like they kept adding one more thing that needed to happen for her to come home. She's 2 weeks old now and I feel like we're so close. I'll probably reach another breaking point on Monday if we get no news on when she can come home by then.
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  • You are SO not alone in this. The NICU experience is, by far, the most draining, exhausting, stressful experience any of us will likely endure.

    I hit my breaking point after about 8-9 weeks. Which, in hindsight, seems ridiculous. We had gotten through all of the "scary" hoops -- and were just waiting for the girls to master eating (and, to a lesser extent, breathing). I SHOULD have been a mess those first few weeks, not that late in the game. I had two days where I broke down non-stop in the NICU. I had like no control over my emotions (and I'm pretty stoic -- so I was even more angry at myself for letting that wall come down). So much so that one of the care coordinators handed me a video she thought would help (and that made me even more frustrated. Lol). The video was actually good -- it was the Pampers-sponsored mini-episodes of another preemie family -- but it definitely sat on our counter for weeks before I'd watch it. :)

    Like PPs have said -- the closer you get to discharge, the harder and harder it can be. Even if, medically, your LO is completely stable and just hanging out and learning to eat.  

    You do what is best for you. I found that just bawling my eyes out sometimes helped. Just get it out. If you need to take a break from the NICU for a day -- do it. Your LO is in amazing hands. You need to take care of yourself, too! 

    TTC Since 11/10 due to Unexplained IF 
    4 Rounds of Clomid, 2 Rounds of Femara + IUI, 2 rounds of IUI+ Injectables (Bravelle + Menopur) = First BFP! TWIN GIRLS!

    November 2, 2012 - Claire (2lbs 8.9oz) and Paige (2lbs 10oz) arrive at 29w3d due to PTL and pPROM at 28w5d 
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  • kck329kck329 member
    imageCurlingRocks:

    Welcome to "hitting a wall".  It is a normal part of the preemie/NICU experience, even though it is really painful.  My best advice is to acknowledge your emotions as they come and allow yourself to work through them; get counseling if you need it.  (It doesn't make you crazy.  I started counseling after my miscarriage and couldn't have gotten through the NICU experience without it.  I still go sometimes when I feel like I need a tune up.)  If you try to bottle them up or brush them to the side to "be strong", you'll only prolong the inevitable and make the eventual expression of these emotions much more explosive and debilitating. 

    Hang in there, mama!

    This is such good advice. Deal with your feelings now, while they are fresh. If you need someone to talk to ask your OB or the NICU social worker for referrals. If you need a day off, take a day off. It feels impossible but its important to take care of yourself a little bit too. 

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  • KatFCoKatFCo member

    I'm sorry you're struggling right now. It really is difficult and the NICU can make people feel so isolated, especially if people on the "outside" don't understand. Right now, like PPs have said, do what you need to do for yourself, your H and your LO. That's it.

    Also, I'd suggest asking if your NICU has a support group or a parent advocate. They can be helpful because it's pretty much their job to help you get through this. Sometimes even talking to the chaplain is good, even if you're not religious. Our NICU had a chaplain just for that unit, so he was around a lot.

    Unfortunately, you can't spend every moment with her, and that's okay. If you're worried she misses you, record yourselves talking and singing to her and ask that it be played in her isolette. But it really is okay if you can't be there a lot.

    Sometimes taking a friend to sit with and chat with you an be helpful too.

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  • You will get through it! My daughter Amelia was also born on May 23 and we spent 2 weeks in the NICU (I was at 35 weeks). She came home two days ago. I had to be there as much as possible to establish BF and spent the second week in a boarding room with her 24/7. It was so hard emotionally and physically but we knew that it was best for her to be there. I felt guilty sometimes because Amelia was only there due to low birth weight. I was surrounded by parents whose children had been there for months and was amazed at their persistence. The NICU can be traumatic but once you have her home, you can enjoy her and feel normal around her.
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