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Mamas who are spending time in the NICU - Page 2

post #21 of 87
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
post #22 of 87
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?
post #23 of 87
Thread Starter 
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
post #24 of 87
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.
post #25 of 87
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!
post #26 of 87
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!
post #27 of 87
Thread Starter 
Quote:
Originally Posted by sehbub
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!
Dont let it get to you- I know exactly how you feel. But we would be right there complaining too about whatever. Thats why I started this. so yes I know what you mean but leave it there.
post #28 of 87
Thread Starter 
Quote:
Originally Posted by sehbub
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.
thats the only people we would talk to for days-nicu parents, actaully still. Its even hard talking to my own parents and family plus my best friends. The ins and outs kill you saying them over and over. Just to feel normal a few weeks ago we had a nicu dinner for some couples there. They all agreed it was a great idea.
post #29 of 87
That is a really great idea. There's only one other mama who is there all the time, and she happens to live about 10 minutes away from me when we're home, so we've already exchanged contact info so that we can get together in "real life" once all this is over.
post #30 of 87

My NICU experiences

I have 2 prior experiences in NICU. My first was totally unexpected, nearly 15 years ago, with my second-born. DS was born at 34 weeks, and we were totally unprepared. He was born 6/23/91, and was due mid-August.This was before routine ultrasounds, and we thought he was only 2 weeks early, but turns out he was 6. He came after they gave us pitocin, and wasn't breathing.Other than that, it was a natural birth. They drs said that if I had any drugs, my son would be dead! I didn't even get to see him before they whisked him away! He had no lung function-they were still pasted shut. Though he was early, he weighed 6lbs, though he quickly dropped to 4lbs8 oz. Not only that, they transferred him to a hospital an hour away, and we had no way to get to him. I didn't get to see him for 2 weeks. When I finally did, he was ready to be transferred back to NICU at the hospital where he was born. Though I pumped every 3 hours,(and sent the milk to the other hospital through the hospital where he was born) I got mastitis twice in that time, and was generally miserable. There was definitely PPD there. I got to nurse him right before he came home for the first time. Oh, how badly I still feel about it all.

My second NICU experience was 2 years ago, in Feb 2004. Our 9th child was born with spina bifida. She was born via c-section, 4 weeks early.(My first c-section) They cut me open and took her out. They let me see her before they took her away. DH got to go with her. They tranferred her out 2 hours later to another hospital, but only a few blocks away. SHe had her first surgery at 2 days old, to close the gaping hole in her back. I was the earliest c-section patient to leave the hospital, as they tried to get me out before her surgery so I could see her(less than 48 hours after she was born) but we missed her by about 15 minutes! She came through fine, though they had her propped up by her feet, so her head would get large so she could have surgery for her hydrocephalus. They kept her like that until she had surgery at 9 days old. I got to touch her, and even feed her breast milk through a tube, then bottle, during this time, so I felt much better than I did with my son. And, I got to see her nearly every day-every other day. She had her shunt put in her brain at 9 days old, and though she is still small(She's about the size of a 12month old), she is doing great. She doesn't talk, but does sign language, with about 60 signs. Our whole family has been learning this, to be able to help her. She also has other issues and birth defects, such as agenesis of the corpus callosum, (which means the band of fibers that connects the 2 halves of the brain never grew), rocker-bottom feet, and clubbed feet, which will likely need surgery in the next few years. She can't stand or walk, but can finally crawl on all fours. She has a walker, braces, and a wheelchair contraption that she just loves to run her siblings over in! Through it all, I am thankful for the NICU experience I had with her.

Our first baby was 2 weeks late. Babies 3-8 were all relatively on time, with only a few days early to a few days late.Other than the c-section,where I needed the spinal, I will take nothing more than tylenol for my labors and deliveries. It was too close a call with my son, and not worth it.Hopefully, baby #10 will stay put until he's due 6/29/06. I've just been given the green light for a VBAC, so I'm hopeful all will go well. After my c-section, the recovery was the worst thing-I even got infection in the stitches and wound up in the ER!

I feel for all of you having to go through your experiences. I hope that you will be able to take some good home with you through it all. Let me reassure you, that in today's techno world, it is much better for your baby than 15 years ago! The drs have told me(2 years ago!) that a baby born when my son was only would have had a 20-25% chance of survival. Today, a baby born at the same gestational age has a 90-95% survival rate!

All in all, it will make you a stronger person. Best wishes to you all.
post #31 of 87
Quote:
Originally Posted by Amys1st
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
Oh yes, NICU stays *require* insurance. And I've heard that if you don't have insurance, you can file with the state pretty quickly and get your baby on some kind of insurance that will pay for a NICU stay. But I heard about one couple that didn't file in time and they had a $100k bill to pay themselves.

The bill for DS's hospital stay was $53k - just having a bed there. I know we got more bills after that, and I think it ended up totalling about $100k, but thankfully, insurance paid 100%. DS was in the NICU for 28 days, most of that feeding and growing. My own bill for 5 days hospital stay and vaginal birth (no drugs, but we had the drugs to keep baby in for a few days after PPROM) was about $9k. I was surprised it wasn't more than that! I guess since I live in a low cost of living area, the hospitals aren't quite as expensive either.

I hope your baby gets to come home next week! So she's 33 weeks gestation now? My DS came home at 33w3d gestation, and it was just SO WEIRD to have him home when he was supposed to be in my belly another 6.5 weeks! But it's so good to bring them home and have them feel like they're YOUR baby - not having to follow hospital rules or be limited in holding time or visiting hours, etc.
post #32 of 87
sebub, my 2nd son spent 9 weeks in th nicu due to infection he caught in thier scn check with your insurance co. my doctor wrote a script for hospital grade breast pump, the order was set up by hosp lactation consultant ,it was delivered 2 day later and was covered by insurance untill I did not want it any more justin was 26 mos when Isent it back. you may have to rent it for a couple weeks untill paper work gets done they should reimburse you mine was covered in full. also you may try some lactation support tea at your local drugstore/natural foods store you can get it on line too. those nipple sheilds work too! good luck

All nicu mommies best of luck and keep fighting for what you know is right. kangaroo care rocks! .
post #33 of 87
Sam's has some problems, apparently.

She had an echo done yesterday, and they found out she has a ventricular septal defect (hole in the heart) which "should correct itself and not cause any problems for her" and she also has a patent foramen ovale (the wall between the two upper chambers of the heart didn't close) which, again, shouldn't cause any serious problems. She is also having a VCUG done today to rule out bladder reflux, which I had really badly as a kid, as did my mom. More than likely she'll have it to some degree, we just need to know if we should anticipate surgery in her near future.

I know she's in good hands, but I'm so scared. She's so tiny and helpless.
post #34 of 87
Sarah,
They said that it should close on its own? That is a good sign. My son also has a VSD, but it is only the size of a needle now. They said it would be probably 2 more years for it to close completely. I know I have heard that some close within a few months, some within a year, and some can take as long as 18 years. I'm happy that they said it will close on its own...
I wouldn't be able to tell if it wasn't for the docs. He is very active, and the only thing that needs to be done for it is that he has to be pre-med before he goes to the dentist.

Good Luck,
Mary
post #35 of 87
Thread Starter 
Sarah- the baby next to Maggie had that as well and if it dosent close on its own they said she would have a routine surgery when she was about 2years old. Maggie also had a reflux test and almost all the kids have it in there to some degree. I can relate to how you feel and its really an emotional rollar coaster. Its even harder being away from home too like you are.

as for the bill...
Keep in mind the hospital total is for 71 days. She was only in Feed & Grow for about 2 days, the rest was true NICU level care. Also the micro preemies like Maggie get very high level care for their first several weeks and that requires a nurse by its side 24/7. Normally the nurses have 2 babies they care for, but for micros, they only have 1 baby which ups the cost. Plus if the baby is vented for any time, the respiratory thpst are also involved. You add all meds, tests etc, it adds up. 180K of it was for nursing care. The rest was all the other. The Drs bill on their own. And she had a pretty uneventful stay considering she didnt need surgury, isolation, too many test etc. Some of the babies in there will see bills close to a million.
post #36 of 87
Thread Starter 
Quote:
Originally Posted by boscopup
I hope your baby gets to come home next week! So she's 33 weeks gestation now? My DS came home at 33w3d gestation, and it was just SO WEIRD to have him home when he was supposed to be in my belly another 6.5 weeks! But it's so good to bring them home and have them feel like they're YOUR baby - not having to follow hospital rules or be limited in holding time or visiting hours, etc.
If I was still pregnt, she would be 37 wks on Friday tomorrow. But they consider her 36 weeks as of yesterday-wednesday when she turned 12 weeks. She was 24 weeks, 6 days when born so they consider her 24 weeks. When you add 24 and 12 its 36 so thats how they consider her age.
There was no limit on holding time etc as she got older. We could not hold her for a month though. Once she hit 32 weeks, it got easier. Since its a teaching hospital, rounds were 9:30-noon everyday so you could not go then. But otherwise anytime. Now at the local hospital I can go anytime.
post #37 of 87
My baby is 33w2d gestation now. Or would have been, I guess.

I have immense faith in the docs, and know she'll be fine. She'll have to pre-med for the dentist too, and for any other procedure. But that's minor in the grand scheme of things.

On the plus side, the neo-natologist was going to talk to the attending about allowing Sam to take a bottle at every feed, and then just gavaging what was left. That way she'll develop muscle memory more quickly, and can come home. It's hard to hand us a basically perfectly healthy baby and tell us she can't be in our home where she belongs, you know? I know all of you who are close to discharge know what I mean. You're just waiting for that teeny tiny little extra bit.

Sam hit her target weight of 1800 grams yesterday. For anyone who's wondering, 1800 grams is 3lb, 15.4oz. I gave her a bath and weighed her, and she weighed exactly 4 pounds, and then she pooped, which dropped her weight to 3/15.4. So that's a good thing. She's gaining weight like a champ.

One of the nice things about UofM, Amy, is that in the "satellite nursery" (feed 'em and grow 'em) you walk in to a central room where they have the scrub area and the nurses desks, and then there are two rooms for the babies branching off of the central room. The docs round in the central room, so the only time you're absolutely not allowed to be in with your baby is from 7-7:30am/pm while they take care of shift change for the nurses. So I get to spend from 7:30am-7pm with her, which is wonderful. We're definitely looking forward to the day when we can pick her up without worrying about her leads getting disturbed and beeping though!!

So far the doc hasn't called back about her VCUG results, so we're taking the "no news is good news" approach to things. On the plus side, if she does have the kidney reflux as bad as I did, then they can operate now, and she won't remember the years of tests and catheters, like I do. Silver lining, right?
post #38 of 87
Niko is home! I can't believe I get to be with my baby ALL the time. It's so great & so weird at the same time.

I'm hoping all they other babes come home soon!

L
post #39 of 87
Congrats, loudmama!!!!!!!!
post #40 of 87
I'm glad some of you are at hospitals where you can hold your baby more. Mine had archaic rules. You could hold the baby for 30 minutes each nursing shift. And this wasn't for intensive NICU care babies - this was feeding and growing type babies! You could be at the NICU any time, except 2 hours around each nursing shift change and 2 hours in the afternoon ("quiet time" for the babies). You just couldn't hold your baby that much. :

Luckily, DS got moved to the Pediatric ICU as an "overflow baby". They had 11 sets of twins born that month, and were running out of NICU space in an already crowded NICU. They were in the process of building a new wing at this point, but needed to move 3 babies out, and I agreed to let them move DS. It was the best decision! We had a PRIVATE room with a recliner chair and a TV. I was allowed to hold DS ALL DAY. It was wonderful! My parents had more access too - they always visited in the evenings. In the NICU, grandparents had 30 minutes in the morning and 30 minutes in the afternoon. In the PICU, grandparents can come any time. It was so nice being in there that last week and a half or so.

The new NICU wing opened while we were still in the PICU, but once you're out of the NICU, you don't get moved back in, so we stayed in the NICU. I toured the new NICU, but was glad I got to stay in the PICU. You can't beat a private room with a TV and unlimited baby holding access! And one of the nurses even suggested kangaroo care - something the NICU nurses wouldn't ALLOW. : I hear things are changing at this NICU soon with regards to kangaroo care though... I certainly hope so!

Luckily, my hospital was at least pro-breastfeeding, and the nurses called my colustrum "liquid gold" when I gave them 2 drops in a bottle. They were great about only giving him my milk once it came in, etc. And they really encouraged me. So that's the one thing they weren't archaic about!
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