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Mamas who are spending time in the NICU

6K views 86 replies 16 participants last post by  sehbub 
#1 ·
Okay mamas, we have a few of us, so lets use this area to talk about Life in the NICU

Of course any mamas from the other boards are welcome to join in but into yourself, your original due date and when you delivered and any questions you have or frustrations etc.

I am Amy age 34, I had an original due date of June 1 and Maggie was born as most of you know at 24 weeks, 6 days on Feb 15th. Maggie weighed in at 1 lb 12 oz and now is 4 lbs 12 oz. she spent 10 weeks total in the NICU and is now in a special care nursery.

Looking forward to talking!
 
#2 ·
I am a previous NICU momma, and will most likely be one again...

I had my son June 6, 2000, but he was due July 11. I had him due to severe pre-e, with HELLP syndrome, and delivered via emergency c/s. He was 35 weeks when I had him, but was only 3 1/2 pounds when born due to IUGR. He only had to stay for 18 days to gain weight.

I am now pregnant due July 18, and my bp is rising again. I am under stricter monitoring this time, but think baby will be here early once again...

I am so sorry about all of your NICU experiences. It seems like many of you are doing a great job taking care of you little ones,as I was a lot more naive then, and didn't force anything unto the staff as many of you mommas are doing. GOOD JOB!!!

Keep pushing for what you want mommmas: Here are some of the things I didn't get to do...

*I only got to breastfeed the day before I got to take him home. I pumped, but the staff said that it gave him diarrhea and didn't give him anymore. Had absolutely no support in helping me to breastfeeding.
*I went in one day and help him for about 3 hours since the nurse said it was good to hold the baby as much as possible, and I was only seeing him 1-2 times a day. The next day, I got yelled at for holding him so long, as he had lost weight due to my excessive holding. I told them they said I could, and started to cry because they were yelling at me for holding him so long when they said I could. They blamed it on Post Partem Depression...
*I DID NOT DO ANYTHING TO HURT THE BABY WHEN PREGNANT...( I didn't even dye my hair, or use my heated electric blanket...)
Because I was almost full term, and he was so small, they decided to blame it on me because I MUST have smoked, drank, and/or did drugs, in which when they asked me, you could tell they didn't believe me. ( While my step-sister drank and smoked during her pregnancy, and had a healthy 10 1/2 pound kid... IMO, he does seem a little slow though...) Of course it couldn't have been because I was sick during my pregnancy, and my OB was a a**.

Keep pushing for what you want mommas. It really pays off in the end. Good Luck.
Mary
 
#3 ·
My DS was born April 17, but was due to come around June 20th. I had some bleeding about 2 weeks earlier, that turned out to the beginning of a placental abruption. 2 more times bleeding & I was then put on bedrest in the hospital. Had him a week after I was admitted to the hospital.

He's now 2 1/2 weeks old. He has finally surpassed his birth weight. He's in a crib now & doing well. Just needs to be at the breast or bottle now for every feed.

Wish I could be with him more. Its hard with my 5 yo DD. Not liking having to give him a bottle, but realize it has to be done. The hospital has been great. Encourages my involvement, Kangaroo Care & breastfeeding. I want him home!

L
 
#4 ·
Hello!

I'm Lindsey and I'm 28 years old. This is our first baby. My baby was originally due June 13th. M husband and I just had an ultrasound on the 28th of April because I was measuring big. The ultrasound showed the baby measuring at 36 weeks instead of 34. We were scheduled to meet with an OB the following week but we never made it.

On Wednesday May 3rd, I woke up and thought I had wet myself a little. When I went to the bathroom I leaked a lot and found a bit of blood on the toilet paper. We went to the hospital because at that point I was gushing fluids every few minutes.

I got checked in and found that I was dialated to 1 and the cramps were very mild at that point. But with the baby's heart rate dipping we decided to agree to be induced (I don't think we followed anything on the birth plan!). After awhile of getting heavier contractions I was dialated to 3-4 and ten within an hour I was at 7! While I was waiting to be checked again I could feel the baby's head moving down. I called the nurse in ASAP and she could see the head easily. So with my DH, sister, and the Dr, Rn, and NICU staff all there I pushed the baby out in 3 pushes! There wasn't any pain at all! In fact, I didn't know her head was out until the Dr told me to look down at her.

I didn't get to see her until later that night and my heart broke when I saw all the tubes in her face. I couldn't help but cry for a long time. I may have scared the staff or something because they were a bit short with me and DH in the NICU that evening. But now they are great. They are encouraging us to do all the things we'd like to. We even play music and recordings of us reading books to her in her isolette.

I have family that lives a few minutes from the hospital so we have been staying with them so that we are there for all of her feedings. Now that my milk has come in I am producing more than she needs but it feels so great to be able to provide something for her.

I can't wait to get her home. I don't think a lot of family and friends realize how hard it is not to have her. I miss being pregnant and I die when I go into her empty nursery.

Ok, I rambled on and on....sorry. Thank you for starting this thread.
 
#5 ·
This is why I started this thread. Please feel free to ramble all you want and talk to Nicu mamas here.

One thing that DH and I mourned is we feel cheated. Cheated of having the birth we wanted, cheated of having Maggie at my breast 20 minutes later and instead 7 weeks later, Cheated of not holding her for 4 weeks, not having our AP style parenting like we had when dd1 was a newborn, the list can go on forever.

OTH, We feel that we are lucky we have had a normal delivery under our belt becuase we know that MAggie will get bigger, we will eventually bring her home and then we can do our AP style parenting we always want to do. So I cannot imagine how the parents of a 1st child feel.

But now the weeks are turning into days until she comes home but there is still a rollar coaster ride. Just when she is doing good, it seems somthing happens to set her back Uggghh!!!
 
#6 ·
So, there's a chance my boy could come home this week. He's getting better a nippling all his feedings, & once he masters that, he should be able to come home! A nurse reccommend bringing his carseat to the hospital so they can do the carseat test. That way he'll be ready when they give the ok! Wow! I'm excited & scared all at the same time!

Btw, He was up to 5lbs 7.5oz yesterday. He's huge!

L
 
#8 ·
I'm with you, Amy. Being told that I CAN'T hold my daughter was the worst thing I'd ever heard. And not nursing her, and losing the homebirth we wanted, and the empty nursery is a killer too. My DH had to close the door. He just couldn't handle walking past her room every day while I was two hours away staying near her hospital so that I could be with her.

Forgot to introduce myself:
I'm Sarah. I'm 22, and this is our first baby, although I have two "bonus" daughters, thanks to my husband's first marriage, so I've been a mama for about two and a half years now.

I went in to labor at 28 weeks, and a week in the hospital, a week at home, and another week in the hospital later, I delivered Samantha at 30 weeks, 2 days gestation. She came out screaming after 16 hours, and has been perfectly healthy every since. She only spent 8 days in isolation and then was moved to the feed 'em and grow 'em satellite nursery to get her weight up and prepare her to go home. We have been told since day 1 that she will be able to come home on Mother's Day. Unfortunately, that doesn't appear to be the case anymore. She isn't eating from a bottle yet (not reliably anyway) and she has to take all 8 of her daily feeds from a bottle (or breast, but we'll master that at home) before she can be released. She's gaining weight like a champ, but not eating yet. I know that she's only 33 weeks gestation, and that she's right on track for that age, but she's been so far ahead of everyone since the very beginning that it's hard to accept that she's not coming home.

We just want her home.
 
#9 ·
Marlow nursed from my breast today!

She will not take a bottle but she is a champ at the breast. Now I have to be there for all of her feedings! She defintely knows what she wants.

She is still under the bili lights too so that will hold her up for awhile too.
 
#10 ·
WTG Marlow!! Maggie is a nursing champ as well and also takes a bottle but she loves her mama milk from her mama!

I would not let them give her a bottle until she nursed well.
 
#11 ·
Hi,
I am Chrissy, and was due on June 13. My water broke in the middle of the night on April 30, and 4 hours later he was born. He weighed 5 lbs 12 oz. He was able to breath w/o oxygen and did not need a feeding tube. What is keeping him in, however, is reflux that causes him to forget to breath. He has to go 1 week w/o an episode before he can come home, so we are looking at maybe Saturday.

He has been nursing like a champ, and is almost back up to his birth weight. I cannot visit him as much as I like because the hospital is 45 minutes away, and I also have a 3 year old daughter that cannot come with (she has a cold).

I am tired, so tired.
 
#13 ·
Just wanted to hop in and give ya'll some support too.


I'm Vera, and I was due Sept 10, 2004. My water broke June 24, 2004, and DS came June 27 - 29w4d gestation. He came out screaming, thanks to steroids! He came home at 33w3d gestation, and he's now a healthy and BIG 22 month old.
I see regular newborns now and they actually look small! It's amazing. He was 3 lbs 13.4 oz at birth (big for a 29 weeker), and regular newborns looked huge at the time, but now they seem so itty bitty. Neat how your perspective changes.


We had the normal preemie issues... learning to do oral feedings (went home 100% breastfed with a nipple shield), apnea (both sleeping and eating - the eating ones kept him in a few days longer), jaundice, etc. And later when he was 9 months, he was diagnosed with anemia. Don't forget to get your preemies' iron levels checked later on!!!

I remember the day we went to pick him up. We went in the afternoon, because I had a baby shower that morning (knowing I'd not be out of the house for a few weeks, this was the best time to do it). When we walked in the room, DS was laying in an open crib with NO monitors attached to him. I was freaked! After all the apnea episodes, I was thinking "What if he'd had apnea this morning and the nurses hadn't noticed?", since he'd been disconnected from monitors all day. It was just so scary to me. But thankfully, I got over it and brought my baby boy home. He had ONE apnea episode while feeding that first night, and that was really scary. But after that, he never had one again!

Oh, and he also had reflux, which is common in preemies, and I've read it's also common in women who had antibiotics before/during labor (with PPROM, I obviously had antibiotics). So we treated him with regular reflux meds (Zantac and Prevacid at two different times - get FLAVORED meds), and then I finally read about probiotics, and that ended up getting him off the reflux meds. So it's worth trying if you're dealing with reflux! May or may not work for you, but it doesn't hurt to try it and give them some good flora for their gut.


I hope you all will have your babies home soon, and that you won't have any long term health issues to deal with. It's scary to have a preemie. Hugs to all of you.
 
#14 ·
Alright, mamas. I have a question.

Sam and I are working on nursing, but her mouth is teeny tiny, and I have very large, flat nipples and huge areolas (I know, TMI). She hasn't really latched on yet, but she will take the whole nipple in to her mouth and suckle a little bit. She nuzzles and licks, just hasn't latched yet. I let the nurses give her a bottle, because it's so distracting and frustrating to try and breastfeed in the hospital, that i just want to get her eating and get her home so that we can work on it at our own pace in the comfort of our own home. Should I worry about nipple confusion? She doesn't have an aversion to the breast, just isn't ready for a nipple that large yet. I'm actually seeing the bottle as a good intermediary step between the NG tube and breastfeeding. Like as she gets stronger on the bottle she'll get stronger on the breast kind of thing. I'm still putting her to breast several times every day, but she's not actually nursing yet. Then again, she's just now (tomorrow) 33 weeks gestation, so it's still early.

Sorry, rambling. The point is, am I completely destroying any chance of getting to breastfeed my baby, or do things sound like they're going okay? She likes the breast, just doesn't have a big enough mouth to latch yet. She has a very strong suck reflex and is getting better at the bottle, so should be eating and coming home in the next two weeks, we hope. Then we can focus on breastfeeding at home. I guess I'm just looking for affirmation of my gut instinct, which is to get her eating any way possible so that we can focus on the breastfeeding at home, at our own pace.
 
#15 ·
Hang in there, she is still on the young side but I totally understand your frustrations.

Some things that have worked for me- they are very "scheduled" in the nicu and have to be by defualt. They usually feed the babies on a schedule. Instead of giving a bottle on the hour, have them wait about 20 minutes, change Sam's diaper, bathe whatever to wake her and get her good awake and hungry. Try putting her to the breast then and see. but yes, it will get easier at home.
 
#16 ·
Sehbub, have you tried a nipple shield? That may allow her to latch better. I'm doing that with DS. Our plan is once he is doing all of his feedings on the breast wit a nipple shield, then we will wean off the shield.

Btw, If there are been no episodes of apnea, DS should be able to come home on Wednesday!

L
 
#17 ·
That's wonderful news, loudmama. We haven't tried a nipple shield yet.

Amy,the only downside with that is that she is starving by the time her next feeding rolls around, and she's been awake for an average of 15-20 minutes before each feeding, rooting around and punching and kicking ferociously. Yesterday was the first time she cried from hunger, which was good that she is getting to understand how to be vocal, but not so good that she had to wait. Since she can't latch yet, the breast was frustrating for her while she waited for her milk to warm up to be put in her tube. I'm going to ask that they increase her feeds today, because she's been on 30ccs for the last week, and her stomach is completely empty by the time her next feed comes around. She's just getting too hungry, and I don't want to see my baby get frustrated like that. I totally understand the need for a schedule, and since we can't breastfeed yet, she can't get snacks in between meals.

We'll figure it out, I'm sure. Theoretically we've only got a week or two left before she's home and I can carry her around attached to my boob all day if need be.

This is exhausting. I miss my DH.
 
#18 ·
UGHHH! Maggie is having some apneas so there is no way she will be home by Mothers Day like I wanted. They are hoping next week sometime now.
 
#19 ·
I'm sorry, Amy. I know how frustrating that is, to an extent. Obviously I haven't been dealing with this as long as you have, but it's hard as hell losing that homecoming date. At least it was for us. Hang in there, she'll be okay.


The nurse suggested I drink some caffeine to help decrease Sam's instances of apnea. They are giving her doses of caffeine every day anyway, and said that my drinking caffeine would help her. Maybe it's worth a try?

My milk supply seems to be decreasing. Is that normal, given the stress of not knowing when she's coming home? I didn't have a huge amount to begin with (was getting around 3 ounces every 3 hours using my manual pump) and now I'm down to around 1.5-2 ounces. I don't know if it's a combination of lack of sleep, plus being frustrated about her not coming home, or if I'm doing something wrong to make my milk dry up. I'm scared that it'll stop entirely and I'll have to formula feed her when we get home. I so desperately don't want that to happen!

Any one else have a similar experience?
 
#20 ·
sehbub, definitely try the nipple shield. My LC automatically had me use it with DS - didn't even have me try without it! It's just so much easier for a preemie to latch onto the nipple shield. DS was started on a bottle, and didn't start breast (with nipple shield) until 4-5 days later. He never lost his ability to take a bottle, but he did fine on the breast... Just took some time to wean off the nipple shield (2 weeks to just get a latch without the thing, and 2 more weeks to get completely off it). But it was worth using the nipple shield to a) keep my milk supply up, and b) keep him off bottles.


As for the drying up thing... No I didn't experience that, but are you just using a manual pump? I highly recommend a *hospital grade* double electric pump. My hospital rents them for $45/month, and it was worth every penny to keep my supply going until DS came home and was nursing all the time (then I didn't need to pump at all). Once baby is on there, your milk supply will match what baby needs. It's really hard to keep supply up with a pump alone, so I hope you'll be able to get baby to do the job soon. You can do it!
 
#21 ·
I have heard that your supply can drop after awhile of just pumping, but my guess is that you need to get a different pump. Can you get access to a Medela Symphony? To Rent? That's the best breastpump out there right now. I'm using it & my milk supply is great. (though that is not always the case with some women) Even a Medela Pump in Style would be better than manually pumping.

L
 
#22 ·
I can try and find one, but finances are REALLY tight right now.

I'm going to talk to the nurses/docs this morning about having Sam transferred to our local hospital since she's stable and just has to learn to eat. That way I can be there for almost all of her feedings, and could do all of my pumping at the hospital. The LC here said that I could pump at 11pm and then sleep 'til 5am, so that's what I've done, then I'm pumping every 2 1/2 hours all day long. Just yesterday I started to notice an increase in my supply a little bit, so hopefully it's just a pump issue. Hopefully having her closer to home and being there for almost all of her feedings will make it easier.

I will try the nipple shield today. Great advice, ladies!

Our little piglet's up to 3/14! And they finally increased her feeds, so now she's getting 32 mls every 3 hours.

How are all of the other babies doing?
 
#23 ·
I started pumpng about 2 hours after my c section. The first month I could pump out 20 oz a day. Then it started decreasing and still is. But I do know the baby will always get what it needs and I see that w MAggie. She nurses for at least 15 mins on each side and is full when they try to give the bottle after. The nurses now give her only about 20ccs of breastmilk after if I nurse her. I am getting up in the middle of the night to pump now to build up supply. My dh is now nicknamed the pumping police. He is always on me to pump.

Hopefully next week some time she will be home. I am bummed about Mother's Day and we are planning on spending it alone and quietly at the hospital. Maybe go for sushi later since I love it and so does dh and dd1.

but like its been said- I am tired so tired and I just want her home
. I am also starting again to avoid people because I just dont want to have to tell yet another person whats going on and this and that. Also we dont answer the phone anymore and tell people not to expect a call back for a while in a mass email we sent out explaining she would be home soon but we do not have a date yet.

:
BTW- we got the total the hospital is billing my insurance co for her 71 days in the NICU. $308,793.98 not incl what the DRs bill on their own which is about 75-100K
 
#24 ·
HOLY CRAP!!

Sorry, that's the only reaction I could think of. Great googly moogly that's a lot of money. Thank God for insurance!!

I guess the milk thing bothers me because (for obvious reasons) I'm not really comfortable trusting my body to do the right thing. After all, it kicked my baby out ten weeks too soon, you know? Just gotta stay confident, I guess.

And I totally understand where you're coming from about avoiding people, Amy. I've only been dealing with this for 21 days, not 73, but I'm starting to not want to stop and talk to people (other than NICU parents) because I hate explaining all the ins and outs. It just gets exhausting.
 
#25 ·
Yet again I'm happy you all are here! I, too, just am not up to talking to people right now. Nice to know its not just me!

DS may not be coming home tomorrow. Had another small apnea episode this afternoon. They may let him come home if he has no others, but we won't know until morning. I want what's best for him, but I want him home too!

L

ps Haven't gotten the copy of what the NICU stay costs, but we just got what was charged for my bedrest & birth, & that was over $13,000. Gotta appreciate it when you have insurance!
 
#26 ·
I really don't want to sound catty, but is anyone else finding it difficult to feel sympathetic towards the mamas who are still pregnant and complaining about their families and friends driving them nuts? Or that they're so uncomfortable that all they want is for their babies to be out already? I know it's common to feel that way, but I would give anything to have my baby inside me where she belongs. She's supposed to be there for another 7 weeks, for crying out loud.

Sorry, just not feeling very understanding right now, especially considering there are so many of us in the NICU boat.

I'm praying for you, loudmama. I hope you get your little one home soon!
 
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