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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!
 
#27 ·
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.
 
#28 ·
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.
 
#29 ·
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.
 
#30 ·
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.
 
#31 ·
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.
 
#32 ·
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!
.
 
#33 ·
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.
 
#34 ·
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
 
#35 ·
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.
 
#36 ·
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.
 
#37 ·
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?
 
#40 ·
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!
 
#45 ·
Sorry I haven't been on the site for awhile.

Marlow is doing great. We just need her to take her bottle for 48 hours of her feedings. I gave in to the bottle because I know I can get her home faster on that than the breast feeding (she'll take almost 50cc of the bottle vs 12cc from the breast). The LC says she should go back to breast easily once we can take her home.

The NICU has been a very traumatic place for us this last week. Twice now they have given her someone else's breast milk. The first time, we brought it to their attention and they told us we were "nit-picking" and they acted like we were making it up, the second time happened it was during a night feeding when we weren't around and the nurse admitted to it and brought it to her supervisor's attention.

We realize that people use breastmilk banks and such but from what I know that milk is screened before being given out. This has just really added more stress for us. We feel like the staff isn't as trustworthy as we'd like them to be.

We don't want to be seen as nit-picking or anything but this is our child and we don't feel like she is safe there. It feels like they are much
more worried about a lawsuit than our baby's health. We just want her to come home safe and healthy.
 
#46 ·
Marlow,

The hospital should be having the other Mom's tested for HIV & Hepatitis among others. The NICU that Niko was at gave another baby my milk. The head nurse let me know this & had my blood tested. This was for the other parents peace of mind. Mistakes DO happen, my hospital even has a hand out for this. The important thing is for the safety of the baby, so they should have the Moms tested. I'm sorry you have to deal with this. The fact that they don't want to admit that mistakes happen is the most worrisome part.

It is hard giving baby a bottle. Niko came home thursday & we still have to give him a bottle for 1/2 his feedings. He's just still too little to get enough out of the breast himself. The hardest part is having to pump during/after a bottle. DH has been doing this at night & when he's home. Its going to be harder when he goes to work tomorrow.

You're not alone hon! This is hard.

Hugs,
L
 
#47 ·
I guess if it were only the milk issue there I may feel better about the whole situation. But they have missed some of her gavage feedings due to pump failure and lack of staff attention. We've had to point out that her food isn't being pumped when it's been sitting there in the pump for hours. I just wished someone had checked on her at least once in over two hours. It breaks my heart to think that when we weren't there no one was with her for so long


She also had apnea because the goggles slipped down over her nose when she was under the bililights. And now she has terrible diaper rash and she screams when we change her.

I am so stressed about her being there. I feel that there are too many babies and not enough staff. I know the nurses are pushed to their limits on what they can do for all the babies. It is really full. Today we got bumped out of our area and are now being doubled up with another baby because there just isn't enough room.

We've been trying to keep our spirits high and stay positive. But some days (like today) it's really hard to. I try to say hi to all the nurses we've met and let them know how much we appreciate all they do for us. I'm sure they're stressed out by the overcapacity too.

I just needed to vent.
 
#48 ·
Hey Marlow Mama!

Hugs to you, it will be over soon, the nicu here was at capity too before Maggie left but that is no excuse.

I am sorry they made you feel the way they did, and its ok to nitpick about your child's health. They have a real strict guideline for the breastmilk where Maggie was at. I was given pre printed labels for her milk as for everything else they gave her. It had a barcode on it that matched MAggie for everything and it was scanned before everything to double check for that. So when it was mixed by the nutrition dept with human milk fortiefier, it was scanned etc. Then put into feeding holders that also had the label on it and then checked in.

I also remember asking if they had a milk bank to donate to and the nurse was taken back by that and said they would never give one mamas milk to another baby. I dont see the issue but I would have a problem with them messing it up and not asking permission.
 
#49 ·
Marlow's Mom,

I'm so sorry that your NICU experience is even harder than normal! Our NICU was busy, but I never felt that any babies were neglected at all. Our NICU even had volunteer cuddlers that come in just to cuddle babies whose parents can't always be there. Allows the nurses to handle feedings & etc, while giving babies much needed snuggle time when they need it. Niko got the benefit of it a lot. He's a boy that just wants to be held!

As for the diaper rash, that may be related to the billirubin. Niko had such bad diaper rash that his bottom bled. They changed him regularly, but said that the billirubing they were getting rid of is very acidic. To help with it, they had him on his belly, with a hole in the diaper & oxygen blowing on it to keep it dry. It was kind of cute to see. They also slathered his bottom in Sensocare, this diaper cream. Not to say that the staff isn't doing this enough either though.

Hugs to you! Hang in there!

L
 
#50 ·
Niko has most definitely started a much needed trend! Assuming we don't have any major setbacks, Sam is coming home on Wednesday! Her kidney reflux was diagnosed as being grade 2 or 3, but the pediatric urologist chose not to operate, but rather decided that there was a 50/50 chance it would resolve itself, so we're taking a "wait and see" approach. She will be reevaluated at six months to see if it's getting better or worse, or is stable.

I'm so deeply relieved right now, even if it doesn't last. At least for now it's wonderful news!
 
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