December 2016 Moms

Premature Birth/NICU Love Club

Ok! I got permission from some of the ladies to start a thread for those of us who went into labor prematurely! Post your love and support here or share the thorns and roses of your day. I'll go first!

My current thorn is the fact that I'm currently day 22 in the NICU and am dying to see his feeding tube come off so we can go home. My rose is always my time breastfeeding Maxwell. I look forward to it every day and I love helping him with his latch. 



Me: 35 Husband: 40
TTC #2: Jan 2019
 DS: 2.5 yo 
 EDD: 12/2/16 DOB: 10/22/16
(Previously MBS2016 Dec 2016 board
<3         <3 
yellingbananatinattt23slartybartfastKateH1216PensiveCrayondmontgokbdukeLinziLoo09phoebecar
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Re: Premature Birth/NICU Love Club

  • Yay for gaining almost a lb already! Good job Jeb! What did they tell you to do when you get home? What instructions did they give you about feeding on demand/according to a schedule? They want Maxwell to take 70 ML by mouth every 4 hours before they will take out the feeding tube. They bumped the minimum up from 60-70 last week.. :/
    Me: 35 Husband: 40
    TTC #2: Jan 2019
     DS: 2.5 yo 
     EDD: 12/2/16 DOB: 10/22/16
    (Previously MBS2016 Dec 2016 board
    <3         <3 
    slartybartfastdmontgoyellingbananaphoebecar
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  • @MBS2016 they told us to feed him every 3 hrs and to not let him go past 4. He normally starts stirring abt 30 minutes before he's scheduled to eat. I was changing him first and then feeding but just did a feed with changing him last and he seemed to feed better. He takes 40 cc's every 3 hours and pediatrician said it should increase to 50-60 by the time we go back in 2 weeks. We have had a few times where he has done 42-43 but those are rare. There are times we struggle to get even 35 in because he gets abt 15 down and wants to go back to sleep. From birth Jeb was 100% oral feeds. He never got fatigued enough that they had to use a feeding tube with him. 
    yellingbanana
  • Aww, it sounds like Jeb has really found a good rhythm.  I think you dodged a bullet by never needing a feeding tube. Last night Maxwell took 75 cc's and they finally let him pull out his feeding tube and keep it out. My MIL and aunt both think their food minimums are ridiculous!! For a while they were insisting we change his diaper and meet his minimum in 30 minutes, too. It is just unrealistic.. Luckily it looks like we might have a chance to go home on Tuesday.
    Me: 35 Husband: 40
    TTC #2: Jan 2019
     DS: 2.5 yo 
     EDD: 12/2/16 DOB: 10/22/16
    (Previously MBS2016 Dec 2016 board
    <3         <3 
    ajstevensonkbdukeDiFazettephoebecar
  • We had a 30 minute limit on feeding Jeb too and it just stressed me out. Plus the nurses were better at feeding him than I was and I kept having to remind myself it's their job and I'm new at this. 

    @MBS2016 I so hope it works out for you to go home soon. It did wonders for me to be in a familiar environment. 

    @dmontgo I felt everything that you are feeling. I felt like my body failed Jeb and it was my fault he was so early and so small. It's okay to feel a little bit of Mommy guilt but focus on the successes and the times you get to be with Ashton. Once I was discharged I spent each day with Jeb but was away from him from 6p-9a each day and worried about a stream of nurses caring for him instead of me. But, due to no visitors during our imposed home isolation he doesn't have anyone else meeting his needs so I'm not so worried about the bonding anymore. 

    I have just tried to cut myself some slack and let myself feel what I'm feeling without letting it be all I focus on. Last night I realized that I won't get to experience the last few weeks of pregnancy and what it would have been like to go into labor and have a full term experience. And there is mourning that too but Jeb is here and I'm so thankful that I've had the chance to love on my son on the outside for the past few weeks. And I'm thankful for this thread too. Preemies and the NICU life is not for the faint of heart!
    dmontgoDiFazetteKateH1216musicinmysoul17
  • @AMack1216 How did you keep up with pumping and breastfeeding for Jeb once you were discharged? I haven't been discharged yet but on one hand I want them to keep me longer so he's very close...on the other I hate being in the hospital! I want to spend as much time with him as I can. Fortunately I work from home but I'm still in bad shape. Hoping to find a solution where I feel like I'm bonding and helping Ashton get out of the NICU ASAP. 
    bobbyflies2020
  • @dmontgo It's so hard, I know. The first week in the NICU I felt so alone with my husband going through it all. I also blame myself and feel like I didn't get to experience the full 9 month pregnancy experience. But every pregnancy is different and each baby is different. Biology runs it's course and is out of our control. But I know it's hard. You did an awesome job and are a strong woman for going through what you went through. I really believe that. 
    Me: 35 Husband: 40
    TTC #2: Jan 2019
     DS: 2.5 yo 
     EDD: 12/2/16 DOB: 10/22/16
    (Previously MBS2016 Dec 2016 board
    <3         <3 
  • edited November 2016
    We just heard this morning that the NICU in Philadelphia has given us permission to do the 8 hour drive back to Boston! Having mixed feelings because of how quickly this is happening and the fact that we are leaving family. Any advice on a smooth discharge and words of encouragement are appreciated!
    Me: 35 Husband: 40
    TTC #2: Jan 2019
     DS: 2.5 yo 
     EDD: 12/2/16 DOB: 10/22/16
    (Previously MBS2016 Dec 2016 board
    <3         <3 
    ajstevensondmontgo
  • @MBS2016 that's great news that you may be discharged soon. I told Jeb's doctor that I really wanted to go home but I was okay with waiting until they said he was ready to go. If they are okay with discharge then trust they are making a good decision for your baby too.

    @dmontgo it sounds like our stories are very similar. I am still pumping every 3 hrs but still not producing enough for Jeb to be bm only. And I'm fine with a little formula too. I think maybe the BP meds they have me on may be affecting my supply or it could be that Jeb was never able to really latch and that impacted the process. I'll keep
    doing this until it dries up I guess and every little bit he gets is better than none. Once I got discharged I think it helped my physical recovery because I had to get up and move and walk 2 blocks to get to Jeb. It helped me to shed some of the massive amounts of fluid in my legs and feet. I was fortunate I could walk to Jeb but I hope you can take the time you are home and Ashton is still in hospital to rest and catch up on sleep because you will need it when he comes home. In step down nursery the nurses have 3-4 babies each and I think Jeb knows he's the only one now and he is making his needs known with a lot more gusto than he did in the hospital. 
    dmontgobobbyflies2020PensiveCrayonyellingbanana
  • @dmontgo what are the criteria for discharge for Ashton? Have they told you specific things they are looking for/he needs to do before they will send him home? That's great that he latched for you. That will definitely help increase your milk supply. Hopefully he will nurse like a champ! 
    dmontgoyellingbanana
  • ashleaf2018ashleaf2018 member
    edited November 2016
    My mom was an OR nurse for years, cardiothoracics specifically but she did do a rotation in NICU. She said generally they keep nicu babies until their original due date but it's certainly not uncommon for them to go home earlier if they are doing well. I hope all the D'16 preemie babies continue to do well and are on the fast track to being discharged. Y'all are some strong mamas, definitely thinking about and praying for all of you and your families!

    ETA: your families, not our families
    PensiveCrayoncjt121413yellingbananaSmashJam
  • Jeb's weight didn't have to be at a certain point to qualify for discharge. He weighed 3lbs 15oz at discharge. His doctor said most babies are 4.5-5 pounds but because he met all of his other benchmarks they let him go home. His other criteria were:
    1. 100% oral feeds (he never had a tube so this wasn't an issue)
    2. 48 hours in open crib and able to maintain his own temperature
    3. 7 days off aminophylline with no increase in episodes of bradycardia (he only had one episode in 7 days)
    4. 5 days with no apnea episodes

    Thank goodness there was a little overlap in the last two. Jeb did 5 NICU nights and 13 nights in Continuing Care Nursery. The doctors commented almost every day that I was there for rounds that he was not displaying the typical Wimpy White Male Syndrome so I think that factored into us coming home sooner than expected.
    dmontgoyellingbanana
  • MBS2016 said:
    @dmontgo I think they tell you the due date as might be your discharge date to try to manage your expectations. In my experience it is often half.

    I regret not negotiating with them sooner about the feedings. We questioned them until they used the scale.

    It sounds like he will be out soon. In the mean time rest and focus on yourself. The nurses understand and expect you to let them do his care. Good luck!
    We've been told the same about discharge. To us it seems like Charlotte is making tons of progress and we should be out of here in two weeks or so, but they won't say anything other than her original due date of 12/24. One nurse told us they don't want to give us a date and then we can't go home for some reason, since its incredibly disappointing. I can't imagine being here for another 5 weeks, but I understand where they're coming from. Luckily we're able to stay just one floor away so visits and feedings are easy, but being away from home is certainly difficult (been here 2.5 weeks so far).

    Luckily our babies are in the best place to get the care that they need. I keep reminding myself of this when I take a few hours here and there to actually go home and feel like a normal human being. It's only been 3 times so far, but the NICU nurses have encouraged it to keep myself sane. 
    dmontgoyellingbanana
  • @AMack1216 Thank you for sharing. I actually just put a Graco 35xl car seat in my Amazon cart.

    People don't seem to understand what the NICU means and the implications for preemies. It seems like they think that since he looks okay, there's no precautions that need to be taken. They're starting to get pushy---we had a friend who we really love text us that he was just going to swing by the NICU like it was no big deal. Ashton's nurse was clear that we can't take him out on the town and that only one or two people can visit at our house at a time sparingly but they must have shots and scrub their hands for at least a minute. She also said that if we don't want visitors we can say that  the NICU said no visitors. Maybe selfish...but I don't want visitors. Ashton is so small and I get worried. 
    DiFazetteyellingbananaKateH1216musicinmysoul17
  • @dmontgo -  I am also loving the updates. I am loving seeing how strong and perfect lil Ashton is. I would also decline to have any visitors around him at this point. Sorry folks. It's just what's best.

    I have the Chicco keyfit 30. It's good. With DS we did snap it into the caddy all the time and used that as the stroller. We only just moved him out of it to prepare it for new baby so it lasted us a good solid while - though we have a little guy.
    Pregnancy Ticker
    Mother of an April '15 baby
    Due December 16
    dmontgo
  • We got the Graco 35lx Snugride also! My friend had a very tiny baby and that was what she recommended because it fit from very tiny to 35 lbs.
    dmontgo
  • @dmontgo Yay! Go Ashton and good job with the breastfeeding and doing his care. I complained about my frustration with the always changing rotation of nurses on the FB page... let's just say they made me cry twice, but a couple really were kind and helped us feel better. The NICU is such a place of twisted, conflicting emotions. Celebrate every benchmark, enjoy and document the positive experiences there and then mentally be prepared to leave. We were out of the NICU with a 5 hour notice. After being there for over 3 weeks. 

    You can do it mama! I'm glad he is doing well. Make sure you are getting the care you need as well.
    Me: 35 Husband: 40
    TTC #2: Jan 2019
     DS: 2.5 yo 
     EDD: 12/2/16 DOB: 10/22/16
    (Previously MBS2016 Dec 2016 board
    <3         <3 
    dmontgo
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