February 2017 Moms

All Things Preemie/NICU

Here is the place for questions, venting, support, etc. for the little ones who need a little extra. 
paigeed
«1345

Re: All Things Preemie/NICU

  • I'm wondering if anyone has suggestions for coping with the dreaded ride home. I wake up every morning feeling positive, spend a good day at the NICU, then lose it on the way home. It just feels so awful leaving without her and knowing that other people are caring for my baby. Anyone found anything to be helpful?
    ohstars
  • It's hard! I tried to have a plan each evening. We went out to dinner, rented a movie, I'd have a friend come over. Also remember that you need to take care of yourself. You just had a baby and need to rest and relax when you can.

    lemieuxk
  •     
  • I agree with everything @cantalopes24 said!

    I wanted to spend 24/7 with DD but DH reminded me that I just went through something major myself and that I needed time to recover so I could be the best mom I could be when she came home.

    When DD was in the NICU I felt like such a failure because it's my job to take care of her, not a nurse. Again, DH was my rock and reminded me that DD was getting the best care possible by trained professionals and that they were helping to get her ready so we could take the best care of her by ourselves when she came home. 

    We were lucky? (I really can't think of a better word lol) that her NICU stay was right around Christmas/New Year so we were constantly busy with gatherings and such. We spent a lot of time with friends and family, which helped a ton. I also like the idea of having a plan with dinner, movies, games, etc. 

    I know first hand how tough it is, I would cry on the car rides home as well! Just know that your LO will be home before you know it!
    lemieuxk
  • Leaving her is the worst.  Most of the time I have a bit of a cry in the car before I drive to go pick up H at his work (we have been driving together due to the bad weather).  Then on the drive home H will drive and ask me all about my day and how Anna is and then I forget about being sad for a bit and that helps.   

    lemieuxk
  •     
  • Oh hugs @lemieuxk! No advice, but I was a wreck when DS was in the NICU so you are not alone in those feelings. My only goal was to remember my sunglasses so I could burst into tears in the hallway and pretend people couldnt see me. 

    lemieuxk
  •     
  • Maybe we could do a little weekly update on how our kiddos are doing here. Or just a small one so I can get more up to speed on where everyone's premises are at developmentally.

    @lemieuxk looking at pictures and videos definitely helps! How is BF/pumping going for you? I have found it isn't too bad right now, but I worry I won't make enough. It's reassuring to know that I am able to make a small amount for him even though it's  not a full feed for him ever.
    Me (26) DH (28)
    Married 6.22.13
    Hoping for a Herd Linky
    4/15--TTC #1
    12/15--IF testing
    3/16--Dx Unexplained IF
    Clomid + Ovidrel + IUI + Progesterone cycle
    Cancelled due to cysts. Started 3 weeks of BCP.
    4/16--Cute Ute! Clomid+Ovidrel+IUI+Progesterone TI.
    Cancelled-no response
    5/16--Hemmorhagic cyst and other cyst discovered.
    No medicated cycle. MRI scheduled to rule out
    septate uterus.
    6/16--Septum discovered. Consultation for surgery.
    Surprise BFP 6/8/16--EDD 2/13/17
    Kole David--1.7.17--Tiny but Mighty, born at 34+5 after HELLP syndrome
    Chart Stalk Me

     
  •     
  • @ColeBug89 Fed Is best!! I had a breast reduction 5 years ago and also anticipated challenges with this. I'm glad my LO got donor breast milk right now, but if we need to supplement with formula later, I'm okay with it. For now, my baby just needs to get full, happy and healthy! 
    Me (26) DH (28)
    Married 6.22.13
    Hoping for a Herd Linky
    4/15--TTC #1
    12/15--IF testing
    3/16--Dx Unexplained IF
    Clomid + Ovidrel + IUI + Progesterone cycle
    Cancelled due to cysts. Started 3 weeks of BCP.
    4/16--Cute Ute! Clomid+Ovidrel+IUI+Progesterone TI.
    Cancelled-no response
    5/16--Hemmorhagic cyst and other cyst discovered.
    No medicated cycle. MRI scheduled to rule out
    septate uterus.
    6/16--Septum discovered. Consultation for surgery.
    Surprise BFP 6/8/16--EDD 2/13/17
    Kole David--1.7.17--Tiny but Mighty, born at 34+5 after HELLP syndrome
    Chart Stalk Me

     
    ColeBug89MummaBear3
  •     
  • Absolutely fed is best!  
    We had the option of formula or donor milk until my supply could keep up.  I did choose donor but would not of hesitated at formula if that was my only option.

    My supply was slow to come as well, but once it came in it was good.  In fact i pump so much that the nurses have a huge stash of frozen milk that i dont need to bring in milk daily.  I pump while at the hospital so she always has more then enough fresh milk.  Now what i pump at home i freeze and i have so much frozen that i am thinking about donating.  

    Im assuming that both pumping amd nursing Anna is causing my almost over supply.  
    ColeBug89paigeedohstars
  • ColeBug89ColeBug89 member
    500 Love Its Fourth Anniversary 100 Comments Name Dropper
    edited January 11
    @paigeed I'm glad to hear your LO is able to have donated milk!

    I would also be interested in hearing weekly updates on everybody's LOs. I don't know many people IRL with preemies so this is all new for me!

    As of now, I'm able to keep up with DD with exclusive pumping, but I've been cutting it close as she's eating more. We've tried nursing, but she just doesn't have the interest and gets super frustrated because the flow is slower than her bottle. I'm sure we will have to supplement eventually but I'm just glad she is healthy and gaining weight with her breast milk/formula concoction for now lol. 

    ETA: Like right after I posted this I got a flyer in the mail about a breastfeeding support group at the hospital on Friday so I'm going to go and see if the LCs can help lol.
    Kashy17paigeedohstars
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  • @ColeBug89 you can ask them a SNS so you can nurse and she can take in a little more while nursing. You could use your pumped milk in the SNS.

    ColeBug89
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  • @lemieuxk I'd be upset to hear staff say something like that too!  Our babies are normal- they were just a little ahead of schedule. I'm curious in reading that your NICU rooms are shared. Do they have a place for parents to sleep in the shared room?  All our rooms here are private, with a sleeper couch and rocking chair in each room so that parents can stay. 
    On the bfing front, is it possible you need a bigger size pump flange?  Our LC noticed that my nips were rubbing inside the pump and got me bigger flanges. It's made a huge difference in my comfort. I'm pumping 8-12 oz each time and bfing 3 times a day. The LCs are working on a plan to try to decrease my supply since it's so much more than he needs. I never pumped with DD so I had no idea how much I was making then. 
    becbec28paigeedohstars
  • They have a few private rooms here but they reserve them for babies who can't handle much noise/stimulation. The other bed in our room was empty until yesterday and should be empty again after today. They do allow rooming in here but it's not easily accessible and seems like the staff find it inconvenient. I may try to stay a couple nights as we work on BFing more. 

    I've wondered about the flange size. Sorry if tmi buy basically they start out definitely small enough to fit comfortably in a 24 mm flange but as I express they engorge and do seem to rub a little. Maybe I'll try the bigger size that came with my pump. 8-12 oz per pump is amazing! 
    paigeedkswiger06
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  • @lemieuxk I start with the 24 and get engorged by the end as well. One thing my LC said was if it starts sucking too hard, turn it down one dial. That did seem to help the rubbing for me. She also showed me how to hand express at the beginning of each pump session into a spoon. I have been getting quite a bit that way before actually pumping. Has anyone else tried this? It's awesome! I'm also wondering when my milk will come in stronger. I'm 4 days out and don't feel engorged really. I'm trying to keep to a schedule though so when my milk comes in heavier I will be used to pumping more. 

    Our NICU room has 2 babies in it. Each baby has 2 lounger chairs but not a bed for rooming in. We can sit and stay all day. Each baby also has a hospital grade pump so you have all your parts and pieces there and can pump with baby. We haven't been able to do breastfeeding yet, but I hope that next week sometime we can try. I anticipate him to be frustrated since he's been with the bottle once or twice a day for all feeds so far. I guess we'll just see how it goes.

    Me (26) DH (28)
    Married 6.22.13
    Hoping for a Herd Linky
    4/15--TTC #1
    12/15--IF testing
    3/16--Dx Unexplained IF
    Clomid + Ovidrel + IUI + Progesterone cycle
    Cancelled due to cysts. Started 3 weeks of BCP.
    4/16--Cute Ute! Clomid+Ovidrel+IUI+Progesterone TI.
    Cancelled-no response
    5/16--Hemmorhagic cyst and other cyst discovered.
    No medicated cycle. MRI scheduled to rule out
    septate uterus.
    6/16--Septum discovered. Consultation for surgery.
    Surprise BFP 6/8/16--EDD 2/13/17
    Kole David--1.7.17--Tiny but Mighty, born at 34+5 after HELLP syndrome
    Chart Stalk Me

     
  • @paigeed Don't be discouraged about not nursing yet. We have only been nursing for 4 days so far and DD will be 2 weeks tomorrow. They have been counting a nursing session as 1/2 his needs and giving the other 1/2 through his feeding tube. Today was the first time a nursing session lasted long enough that they considered it a full feeding. He just gets so tired after 20-25 minutes. 

    DH asked the docs during rounds today what our estimated departure date would be and they said another 1-3 weeks. That was super disheartening to hear, as he has made so much progress. He is up 7oz above his birth weight which puts him at 5lb 3 oz. he is on 1 liter of O2 but the respiratory therapist has recommended d/c'ing it all together for the past 3 days:/. His vitals are good-he has only had 2 de-sat episodes in the past 2 days and both times he rebounded on his own within a moment and his 02 never went below 84%. We certainly want him to be safe and healthy but it's frustrating in hearing such a varied timeline. With the visitor restrictions, poor DD at home is super anxious to have us all at home. Friday will be 1 month since this all started for us, with my water breaking and being admitted to the hospital. I never thought 1/3 of my leave would be spent without my baby at home. 
    paigeed
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  • I was hand expressing into a spoon before pumping when I was expressing colostrum and it did help a lot! I think it's normal for milk to come in between days 2 and 5 so I imagine yourself will be in soon! I'm shocked at how well Caroline has taken to BFing, she does better with that than the bottle! Fx you have a similar experience
    paigeed
  • @chef'swife I'm sorry to hear that! I've been too afraid to even ask because I know I'll be upset if the answer is more than a week. I don't think dipping to 84% would even be considered an "event" that would delay discharge at our nicu. Is he taking his feeds orally? Maintaining his temp? I know many neonatologidts are very hesitant to commit to anything more specific than around due date so hopefully they are just being super conservative.

    I know exactly how you feel as far as getting worn down by this whole experience. I've spent the last 40 days at this hospital whether as a patient or in the nicu and I'm so over it. I can't wait to just get home and be a family. It's hard when you don't have any space or privacy to figure things out. We will get through it, though, and one day this will be just a footnote in our families' stories.
    kswiger06
  •     
  • @chef'swife hearing specific timeframes for things makes me anxious too. So far we have a 2-3 week estimate time for him to be here. Honestly I'm just trying to not think about a specific time or date and just play it day by day. I too am discouraged that so much of my maternity leave time will be taken up without being with my baby at home. Today I wondered if other NICU families don't come visit as often and actually go back to work so when the baby is discharged they have more time at home. What a weird thing to think about. 

    What are are you all doing for your leave? Extending it? Going back at the normal time? Will you be sending baby to daycare or a family member? Gosh, I thought I had things figured out but now, I just don't know that I'm going to be ready to go back to work. 
    Me (26) DH (28)
    Married 6.22.13
    Hoping for a Herd Linky
    4/15--TTC #1
    12/15--IF testing
    3/16--Dx Unexplained IF
    Clomid + Ovidrel + IUI + Progesterone cycle
    Cancelled due to cysts. Started 3 weeks of BCP.
    4/16--Cute Ute! Clomid+Ovidrel+IUI+Progesterone TI.
    Cancelled-no response
    5/16--Hemmorhagic cyst and other cyst discovered.
    No medicated cycle. MRI scheduled to rule out
    septate uterus.
    6/16--Septum discovered. Consultation for surgery.
    Surprise BFP 6/8/16--EDD 2/13/17
    Kole David--1.7.17--Tiny but Mighty, born at 34+5 after HELLP syndrome
    Chart Stalk Me

     
  • @paigeed I will most likely go back to work for a short time to let them know I want to switch to PRN status. My mom will stay with us again during that short transition time(she's been at our house with DD since I went into the hospital). We are very fortunate that I can work on an as needed basis a few days a month and maintain my benefits. My family also owns a business that I have a large role in managing, so I will most likely return to a bigger role there so that DS can go to work with me, like his big sister did until she started pre-k. I'm also working on a masters program right now, so DH and I had already talked about me dropping down to PRN to focus on school and the baby. It would be so hard for me to send this little guy to daycare right away. Between his early arrival, NICU stay, and then mom-guilt because DD never spent a day away from us till she was verbal, I don't think daycare would be right for us right away. Again, everyone has a different situation and I know I'm super lucky that we have options that allow me to still contribute to our income, but keep DS with me. 
    paigeed
  •     
  • When DD was in the NICU they said the standard time frame they give is until their due date, but it depends on the individual baby as well. We were told that DD would most likely spend one to two weeks and she ended up only spending 5 days so it truly does depend on LO's daily progress.

    As far as staying at the hospital, my hospital had the option for boarding up to a week as long as the c-section recovery rooms weren't full. DH and I boarded the night I was discharged and then stayed home the rest of DD's NICU stay. We are lucky that the hospital is a 15-20 minute drive from our house so we could go see her multiple times a day. Her last night in the NICU, we were allowed to stay with her in the "family apartment" to make sure we could take over her feedings on our own before her discharge. It was a nice spacious room, but it was so weird having her with us hooked up to all the monitors.

    As far as my leave, I was very fortunate that I was able to use a personal day for her birth (the last day of school before winter break) and start my actual leave on Jan 3 when the kids got back. My DH was not so fortunate. His work started a new policy on Jan 1 that gives dads 8 weeks paid, but it goes by the child's birth date so he was only allowed the 2 weeks from the old policy. He was able to use some time for this week and will go back to work next week.
    paigeedWinchesterGirl
  •     
  • You ladies aren't giving yourself enough credit for all the pumping you are doing!! It's sooo hard to do while bsbybis in the NICU. When ODS was in, I was such a mess that I could never establish my supply. Pumping overnight alone made me sob, and I ended up quitting at 6w because I never had more than an oz per side. The fact that you ladies are getting milk for your LOs is truly a feat. And anyone who isn't, I totally understand the emotional roller coaster. 

    My new LO came home from the NICU after a very short stay and I couldn't be more thankful. We are on a similar schedule as the NICU (every 3hrs feed, limited holding, maximum resting, limited stimulation, etc) but know we are so lucky. 

    Our NICU has no private rooms. There are little stations setup around a big room. Only two people can sit at each station, so visitation is very limited. Having a private room sounds amazing though! Enjoy it!

    yogadevilpaigeedkirstynikole
  • I was actually just talking with my husband about my leave. I've already been off almost six weeks due to hospital time. I'm definitely looking to extend, depending on how long until she cones home. I had already planned to return 3 days a week but honestly it's hard for me to picture going back at all right now. That may change though, this whole experience has been really challenging and I may feel differently once we've had some time at home to heal and establish our new normal.
    WinchesterGirlbecbec28paigeed
  •     
  • lemieuxk said:
    I was actually just talking with my husband about my leave. I've already been off almost six weeks due to hospital time. I'm definitely looking to extend, depending on how long until she cones home. I had already planned to return 3 days a week but honestly it's hard for me to picture going back at all right now. That may change though, this whole experience has been really challenging and I may feel differently once we've had some time at home to heal and establish our new normal.
    That's exactly how I feel as well. Another part of me wonders if we will even try for a second at any point. Which we aren't making any decisions on for a long time, but still. If this is my only baby--my fighter-- I want to spend ALL the time I have with him when I can. 
    Me (26) DH (28)
    Married 6.22.13
    Hoping for a Herd Linky
    4/15--TTC #1
    12/15--IF testing
    3/16--Dx Unexplained IF
    Clomid + Ovidrel + IUI + Progesterone cycle
    Cancelled due to cysts. Started 3 weeks of BCP.
    4/16--Cute Ute! Clomid+Ovidrel+IUI+Progesterone TI.
    Cancelled-no response
    5/16--Hemmorhagic cyst and other cyst discovered.
    No medicated cycle. MRI scheduled to rule out
    septate uterus.
    6/16--Septum discovered. Consultation for surgery.
    Surprise BFP 6/8/16--EDD 2/13/17
    Kole David--1.7.17--Tiny but Mighty, born at 34+5 after HELLP syndrome
    Chart Stalk Me

     
  • @paigeed Just wanted to say thanks for mentioning trying bigger flanges. I went up to a 27 and it's already making a difference!

    I roomed in last night and bottle fed during the two oral feeds scheduled for overnight. She took all of one and 75% of the other. Hopefully she's catching on and will start progressing since feeding is what is keeping us here at this point and she hates her NG tube with a fiery passion. 
    chef'swifebecbec28paigeed
  •     
  • @lemieuxk YAY! Omg what a milestone for her to have taken to one whole feeding and some. Girl, that means she is going to only keep catching on! I'm glad the new flanges work better for you. I think that's crucial. 

    Kole isn't quite ready for breastfeeding yet. We are attempting to introduce the bottle to at least one of his care times but he just gets so tired. Today MH and I came home from Denver and we will go back tomorrow afternoon. I needed to feel a sense of normalcy in my life, whatever that may be, and he needed to accomplish a few things with work. I already miss little man, but I know he's being well cared for and one day out is going to be okay. I plan on staying in Denver from Sat-whenever he is released now.

    They are also still watching his bilirubin levels. He was on lights, then off yesterday and today and they recheck his levels tomorrow to see if he needs them again. Praying he doesn't, because I hate feeling like I shouldn't hold him so that he can grow better. 
    Me (26) DH (28)
    Married 6.22.13
    Hoping for a Herd Linky
    4/15--TTC #1
    12/15--IF testing
    3/16--Dx Unexplained IF
    Clomid + Ovidrel + IUI + Progesterone cycle
    Cancelled due to cysts. Started 3 weeks of BCP.
    4/16--Cute Ute! Clomid+Ovidrel+IUI+Progesterone TI.
    Cancelled-no response
    5/16--Hemmorhagic cyst and other cyst discovered.
    No medicated cycle. MRI scheduled to rule out
    septate uterus.
    6/16--Septum discovered. Consultation for surgery.
    Surprise BFP 6/8/16--EDD 2/13/17
    Kole David--1.7.17--Tiny but Mighty, born at 34+5 after HELLP syndrome
    Chart Stalk Me

     
  • @paigeed Watching them under the phototherapy lights is the worst. Caroline was under for two days and she was miserable, trying to pull off her goggles every 30 seconds. 

    Definitely do what you need to do to take care of yourself and feel as normal as possible. This experience wears you down and you want to be operating at full speed when your babe is ready to come home.
    paigeedchef'swife
  •     
  • Photolights hurt my eyes. Ugh. 

    So we got home, I started a load of laundry and I'm a mess of tears now. This is the first time being home without my baby. All. The. Tears. I know he's okay. I know I am going to call for an update in a little bit, I just...ache. 
    Me (26) DH (28)
    Married 6.22.13
    Hoping for a Herd Linky
    4/15--TTC #1
    12/15--IF testing
    3/16--Dx Unexplained IF
    Clomid + Ovidrel + IUI + Progesterone cycle
    Cancelled due to cysts. Started 3 weeks of BCP.
    4/16--Cute Ute! Clomid+Ovidrel+IUI+Progesterone TI.
    Cancelled-no response
    5/16--Hemmorhagic cyst and other cyst discovered.
    No medicated cycle. MRI scheduled to rule out
    septate uterus.
    6/16--Septum discovered. Consultation for surgery.
    Surprise BFP 6/8/16--EDD 2/13/17
    Kole David--1.7.17--Tiny but Mighty, born at 34+5 after HELLP syndrome
    Chart Stalk Me

     
  • Ugh, creepy Internet hugs to you. I've been there so many times over the past ten days. It feels like a hole inside. I have no answers but all the empathy. I just keep telling myself that this will someday be just a blip, a small footnote in the story of our family. Hang in there!
    paigeed
  •     
  • @paigeed Ella was the same way with her feeding. She needed a tube for 3 days and we had to slowly introduced bottle feeds to her.

    Also hugs to you! The first day home without baby is the worst, but it does help to have some normalcy with being home even if it's without baby for a bit. 
    paigeed
  •     
  • That's great news @Kashy17! Ella's feeding issues kept her in the NICU, so I know how exciting it is when the LOs start eating from the bottle on their own  :)
    paigeedKashy17
  • @Kashy17 that's awesome! Here's hoping all goes to plan and you're headed home this week
  •     
  • Kole's bilirubin numbers went back up from 8.5 to 13.5 today. :( boo. More photolights for us. We are just gonna roll with it though and have been singing "I wear my sunglasses at night" and "blinded by the lights.." Trying to make the best out of this whole thing! 
    Me (26) DH (28)
    Married 6.22.13
    Hoping for a Herd Linky
    4/15--TTC #1
    12/15--IF testing
    3/16--Dx Unexplained IF
    Clomid + Ovidrel + IUI + Progesterone cycle
    Cancelled due to cysts. Started 3 weeks of BCP.
    4/16--Cute Ute! Clomid+Ovidrel+IUI+Progesterone TI.
    Cancelled-no response
    5/16--Hemmorhagic cyst and other cyst discovered.
    No medicated cycle. MRI scheduled to rule out
    septate uterus.
    6/16--Septum discovered. Consultation for surgery.
    Surprise BFP 6/8/16--EDD 2/13/17
    Kole David--1.7.17--Tiny but Mighty, born at 34+5 after HELLP syndrome
    Chart Stalk Me

     
  • @paigeed The sunglasses are what I want most to take home and put in Harrison's baby book! His were purple and he hated them. Hopefully Kole will only have to go back on light therapy for a short time.  Harrisons numbers went up also, the day after he came off the lights but went back down to stay after 1 additional day under the lights. That's the hardest part of all this though- 1 step forward and then 1 right back again. Harrison has been stuck at 1 liter of 02 for a week now but because he's having one bradycardia every day, they won't try to wean him off yet. He's doing great with breast feeding and is alert for most all feedings now but we seem to be stuck at this point. 
  •     
  • @chef'swife darn the bradycardia. It sounds like feedings are his strong suit though, that's awesome! We aren't really bottle/breast feeding much yet but hopefully will work on it more in this next week. 
    Me (26) DH (28)
    Married 6.22.13
    Hoping for a Herd Linky
    4/15--TTC #1
    12/15--IF testing
    3/16--Dx Unexplained IF
    Clomid + Ovidrel + IUI + Progesterone cycle
    Cancelled due to cysts. Started 3 weeks of BCP.
    4/16--Cute Ute! Clomid+Ovidrel+IUI+Progesterone TI.
    Cancelled-no response
    5/16--Hemmorhagic cyst and other cyst discovered.
    No medicated cycle. MRI scheduled to rule out
    septate uterus.
    6/16--Septum discovered. Consultation for surgery.
    Surprise BFP 6/8/16--EDD 2/13/17
    Kole David--1.7.17--Tiny but Mighty, born at 34+5 after HELLP syndrome
    Chart Stalk Me

     
  • I kept Anna's goggles.  They were white and it was more of a head wrap thingy. 

    They also had to change her ankle ID tag so i kept the one they cut off too.

    They are possibly pulling her NG tube tonight.....i am not keeping that lol. 

    kswiger06chef'swifeWinchesterGirl
«1345
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