Mamas who are spending time in the NICU

[Amys1st]

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!

[mimi_n_tre]

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

[loudmama]

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

[fireant]

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.

[Amys1st]

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!!!

[loudmama]

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

[soccermominsd]

Jumping in from October DDC. Just wanted to say my heart & prayers go out to you mamas and your babes and families. Like mimi_n_tre said...it's great you are pushing for what you believe in and for what you know is best for your children.

[sehbub]

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.

[fireant]

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.

[Amys1st]

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.

[heytootsy]

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.

[Amys1st]

Hi,
I am tired, so tired.

I hear you mama! I wonder when that will go away??

[boscopup]

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. :lol

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. :Hug

[sehbub]

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.

[Amys1st]

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.

[loudmama]

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

[sehbub]

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. :(

[Amys1st]

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.:(

[sehbub]

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. :Hug

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?

[boscopup]

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! :thumb

[loudmama]

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

[sehbub]

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?

[Amys1st]

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.

:yikes: :dropjaw :jaw 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

[sehbub]

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.

[loudmama]

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!

[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!

[Amys1st]

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.

[Amys1st]

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.

[sehbub]

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.

[hlivengo]

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.

[boscopup]

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! :lol 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.

[medicmama]

sebub, my 2nd son spent 9 weeks in th nicu due to infection he caught in thier scn:angry 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! :thumb .

[sehbub]

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.

[mimi_n_tre]

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

[Amys1st]

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.

[Amys1st]

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.

[sehbub]

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?

[loudmama]

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

[boscopup]

Congrats, loudmama!!!!!!!! :bouncy

[boscopup]

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. :irked:

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! :thumb And one of the nurses even suggested kangaroo care - something the NICU nurses wouldn't ALLOW. :irked: 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! :D

[sehbub]

Congrats, loudmama! Hopefully little Niko will start a trend!!

[Amys1st]

Yay Niko!! Hopfully Maggie will follow by late next week!

[heytootsy]

Congrats! Brody is suppose to come home on Tuesday. It seems so far away, but it is getting closer. He hasn't had an "episode" since Monday night. He is doing great, and has finally passed his birthweight.

So, only a few more days, I hope.

[Amys1st]

btw-

my hospital refered me to this website and its been proven to be an assett.

http://www.pediatrics.wisc.edu/patientcare/preemies/

it also links to some other sites that are good.

[fireant]

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. :(

[loudmama]

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

[fireant]

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.

[Amys1st]

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.

[loudmama]

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

[sehbub]

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!

[Amys1st]

Maggies 3 months!

her reaction to be 3 mos old today:
http://img.photobucket.com/albums/v622/amys1st/DSC00068.jpg

http://img.photobucket.com/albums/v622/amys1st/DSC00064.jpg

[loudmama]

Sehbub, Yeah on baby most likely coming home! It wasn't until Niko came home that I really felt like I was completely his mama. I just felt in such limbo in the NICU.

Amy, your little one is too cute! How's she doing?

L

[boscopup]

Amy, she's ADORABLE! And so alert! Wow!

And congrats to Sehbub and Niko about coming home tomorrow! That's awesome!!!!

Loudmama is right... You really feel like a mama when you get those little ones home. I hope everyone has their babies home real soon! :)

[Amys1st]

Maggie is doing great thanks! And if all goes well, home within 48 hours!!

[sehbub]

Anyone else even the littlest bit nervous about bringing the babes home? I'm starting to get butterflies in my stomach! Partly because I'm just so incredibly excited to finally get to see her all the time, and partly because we are bringing her home on the heart monitor and in the back of my mind I have this horrible fear that something awful will happen and we're so far from the hospital! I guess that's normal for all mamas though, not just mamas of preemies. I can't sit still! I'm running around like crazy trying to get everything ready for her to come home! My house is a wreck 'cause I haven't been home in a month!!

GAH!

[fireant]

Amy, she's so cute!

We heard from the dr today and Marlow is scheduled to come home this Saturday! She had apnea on Monday so we have to wait out the mandatory 5 days episode free (we are praying she doesn't have another one!!!)

Her butt rash is finally gone. The nurses say it was probably due to the antibiotics.

I'm so excited to finally (hopefully) get her home soon. At the same time I feel guilty about showing too much excitement in the NICU. I know it's probably hard on the other parents.

[ladybugamber]

Marlow's Mom,
I think it gives the other parents hope that their baby will be home soon too! I know it would give me hope. They are probably a bit jealous that you get to take your baby home with you and they are once again leaving the hospital without their baby... but... Deep down, I think it keeps the spirts up.
I'm so proud of all of you! I dont know how you do it everyday.... Our thoughts and prayers will be with you all..

[Amys1st]

Maggie is home!!:love

[luv2bmommie]

Yeeeeeeahhh Maggie!!!

Happy Babymoon :)

[PMolly]

Wow, I feel so fortunate after reading what you other mamas went through in NICU. My DS came @ 34 weeks 2 days. After the first 2 days we were just working on getting him to nipple all his feeds. He was there for 23 days which seemed like forever, I can't imagine staying longer. My husband liked to tell people we had a "Rent-A-Baby" while he was still in the hospital since he wasn't home with us.

Fortunately, our hospital had been certified "baby friendly". I'm not sure what all this means, but they are VERY pro breastfeeding. I got so much support from them. They encouraged me to pump at baby's bedside to increase my milk supply and had several pumps to use while there. The last two days he was there I BF exclusively and was able to stay in a "sleep room" that is available to families with children in NICU or peds. I can't believe some hospitals don't do kangaroo care. This was the best for us. I would put him on my chest and after a few minutes we would both be sound asleep - I swear it's the best I slept during those three weeks. My pediatrician kept reassuring me that they've never had to keep one there until kindergarten which only ticked me off at the time.

BTW if you are getting poor care you should talk to a hospital administrator. I had to do this once when my mom was in ICU and it was helpful. They told me we could ALWAYS ask ffor a different nurse for ANY reason. You have to be your own advocate for good care.

I'm so glad your babies are coming home!

[boscopup]

Yay Maggie!!!!! Congrats on going home!

[sehbub]

Sam's home safe and sound!

New pictures at www.flickr.com/photos/samanthab

[boscopup]

Congrats sehbub! Sam's a cutie!!! :)

[Lousli]

Congrats to all you mamas bringing babies home. Giant hugs to those still waiting. I'd like to ask that anyone who has a moment to help out this woman Beth on Birth and Beyond to please visit her thread. She had a c-section after being on mag sulfate for a long time and has a 27 week baby. She is feeling pretty traumatized.
http://www.mothering.com/discussions/showthread.php?t=455398

[*GreenMama*]

Hi All! I'm joining in. I'm Cindy from New York City. My son Matthew was born April 26, 2006 at 35 weeks GD. My original dd was May 29, so he's still adjusted to minus 2 weeks old. Baby is home and doing well, but I contracted a C. difficile colon infection that has me having to take antibiotics and pumping away until I'm off them. Matt is unfortunately being formula fed until then. I also now have a hyperactive thyroid which will hopefully go away on its own. I get tested again in 2 1/2 weeks.

The most frustrating thing for me is how long Matt takes to eat. He can take over an hour to finish a bottle, then I have to pump, change him, eat, bathe, etc, not to mention the infection is causing all sorts of secondary infections...

Hoping that the infection goes away with this first dose of antibiotics. If all goes well I can SNS him starting 9am next Sunday.

[Amys1st]

Welcome Cindy and welcome your new baby!

I can relate to it taking a while to get the baby to bottle feed. DH feeds Maggie her bottles of breastmilk/premie formula to "fatten"her up and it can take a good hour to feed 50 ccs sometimes.

[sehbub]

Sam's the same way. Sometimes it takes 15 minutes for a 50cc feed, and other times it's almost an hour, then I pump and get her re-swaddled and back to bed.

Amy, how did you help Maggie latch on? That's the biggest problem for Sam and I. I'm thinking it will work like the lightswitch for bottle feeding, and one day she'll just "get it" but I was wondering if there was anything I could do to make things a little easier for her. As of now, I offer the breast after I've pumped a bit so that she doesn't have to pull for letdown. My nipples are about the size of a quarter, and flat, so maybe that's part of the problem...her mouth just isn't big enough yet. She just started taking the full nipple on the preemie bottles, so do you think we should just wait it out?

And welcome, Cindy! Glad to hear baby is doing well, and keeping fingers crossed that you're healthy again soon!

[Amys1st]

Amy, how did you help Maggie latch on?

I offered the breast before the bottle and now that we are home and not on that stupid rigid schedule, I offer it more and more since the bottle gives more than the breast, she will get the breast more. My goal is for her to keep gaining and be at 4 bottles daily by next week and bottles once in a while as main goal eventually.

The monitors keep going off and there is nothing wrong. The leads are bad on one so I just unplugged it today and said F**k it. She is at my side 24/7 so I can see her. Also when it goes off, she is fine and I know since I have seen her desat before. Besides the other monitor picks stuff up faster.

[fireant]

Marlow's not home yet. She keeps having apnea episodes. We were supposed to be getting her tomorrow but she had 2 more episodes this morning.

The NICU is so crowded right now. The doctors are putting her on caffeine and a monitor and then we can finally bring her home. We are now just waiting for that monitor to arrive and then we get her. I wonder if the monitor is going to be really complicated for us to use.

It's great to finally get a real go home date without having to stress out about her having episodes and taking full bottles.

It always scares me to give her the breast and have her not take enough milk and then have to insert another gavage tube. It's so hard to watch. But now I have to make sure I'm getting enough milk for her. She's up to 60cc a feeding and I'm only producing about 70cc a pumping.

Here is last weeks pics...still with tube

http://i11.photobucket.com/albums/a185/deedeebunny/Swaddled.jpg

http://i11.photobucket.com/albums/a185/deedeebunny/MarlowwithMama.jpg

[Amys1st]

what a cutie she is!!

here is my cutie:

http://img.photobucket.com/albums/v622/amys1st/DSC00092.jpg

[littlemama06]

:love All those babies are so beautiful:love

[sehbub]

Thank you, Amy. We'll keep plugging along!

[Amys1st]

OK-Im a bit mad.:irked:

Maggie came home on monitors oxygen etc. The monitors have driven us crazy since they are dinging non stop about nothing. the spo2 one goes down to like 20 and then immediatly up to 100 again. Its also super loud. Then the leads all suck so we got this wrap around thing. This morning when dh checked it, it made Maggie black and blue. I said enough and we unplugged the monitors after them doing this for 40 hours straight. Guess what? We have a baby now! She is so happy to be off them and actually slept so soundly this morning and nursed very well. Now she is alert and happy so I put her on a blanket for some tummy time and boom- she turned over and had a satified look on her face. So the monitors can stick it and I can have my baby! She sleeps near us or with us, I nurse her all day around the clock or wear her. I think I will know is there is an issue. The nurse agreed:lol

BUT I am still mad she had to go thru this and we had to pull our hair out over such nonsense!

[boscopup]

Amy, how did you help Maggie latch on? That's the biggest problem for Sam and I. I'm thinking it will work like the lightswitch for bottle feeding, and one day she'll just "get it" but I was wondering if there was anything I could do to make things a little easier for her.

Are you using a nipple shield? That can *really* help get baby on the breast. It's still an articifical nipple, and you'll have to wean off THAT, but it's easier than pumping and giving bottles! :)

The LC at my NICU had all preemies use a nipple shield when first breastfeeding - she didn't even have us try without it. And Joshua was able to go home 100% breastfeeding because of that nipple shield. I was SO glad, because he was needing more milk at that point, and my supply was going to dwindle if I kept with just a pump. I needed the more efficient baby to get my supply back up, which he did quite nicely. :D

For weaning off the shield, I just offered once a day without it, and if it didn't work, I put the shield on. After about 2 weeks, one day he finally latched onto the breast and started sucking like a pro! I think he did it for the next feeding too, then after that he couldn't get it. It took another 2 weeks to completely wean off that shield, but once he had gotten the breast itself, I just offered that first, then put the shield on if I needed it.

[boscopup]

Maggie came home on monitors oxygen etc. The monitors have driven us crazy since they are dinging non stop about nothing. the spo2 one goes down to like 20 and then immediatly up to 100 again. Its also super loud.

I've heard that about the monitors. Ugh.

So has she had any apnea episodes lately? If not, it sounds like you don't need the monitors anyway! Once DS went 5 days without apnea episodes, he only had ONE more, and it was during a feeding, which really I don't count as "real" apnea... It's more the fact that he's a piggy and forgets to breathe while eating. :) After that (the first night home, btw), he never stopped breathing again.

When do they think Maggie will be able to come off the O2? I'll bet that's kind of a pain too, so I hope it will be soon. :)

[Amys1st]

I've heard that about the monitors. Ugh.

So has she had any apnea episodes lately? If not, it sounds like you don't need the monitors anyway! Once DS went 5 days without apnea episodes, he only had ONE more, and it was during a feeding, which really I don't count as "real" apnea... It's more the fact that he's a piggy and forgets to breathe while eating. :) After that (the first night home, btw), he never stopped breathing again.

When do they think Maggie will be able to come off the O2? I'll bet that's kind of a pain too, so I hope it will be soon. :)

She has had no episodes for a long time - about since a week before she came home but that one bout of episodes is why she had the o2 and monitors. She has had none and again all were feeding or pooping related. But since I pulled the plug on the monitors she is this very happy chatty baby who has taken to rolling over already!

[boscopup]

She has had no episodes for a long time - about since a week before she came home but that one bout of episodes is why she had the o2 and monitors. She has had none and again all were feeding or pooping related. But since I pulled the plug on the monitors she is this very happy chatty baby who has taken to rolling over already!

Hooray!!! So is she off the O2 as well? I remember when DS had one day where he had a bunch of apnea episodes just out of the blue (at 2 weeks old), they put him on O2 for the day, but he kept pulling it off his nose, so finally they decided he must not need it! :lol He wasn't having any problems when the O2 was removed. :p After that weird day, he went back to just very occasional apnea.

But it sounds like Maggie has outgrown her apnea, so yipee!!!! That apnea stuff is so scary.

[Amys1st]

still on the O2 but its like a puff at 1/32 of a liter. I have been lugging around this little tank in a bag. Nothing compared to the crzy monitors she is supposed to be on.

[fireant]

Yay! Marlow is home.
But now I have a bunch of questions I was hoping you guys could help me with...please :o

How long should I wait to announce her being home to the rest of the world? I'm worried that everyone who has been waiting to see her are all going to want to come visit at the same time. (our NICU didn't allow any visitors that weren't the parents or grandparents).

Anyone else have a baby on caffeine notice any side effects? I'm wondering if her being so gassy is related to the cafcit. Or maybe it's normal for a newborn to grunt and cry with every poop?? She only gets breastmilk and her meds but maybe it's something in my diet?

Is it normal for babies to "hum" or snore when they sleep?

She seems to be crying more here than at the hospital. She's consolable but I wonder if maybe she is mourning or missing her hospital environment as it was her little home for a long time.

Her monitor hasn't gone off here yet. I hope it's working correctly and she's just doing really well.

It's great having her home. I love being able to care for her here and not ask permission to hold or calm her.

[Amys1st]

Great questions btw-


How long should I wait to announce her being home to the rest of the world? I'm worried that everyone who has been waiting to see her are all going to want to come visit at the same time.
We still have not told people Maggie is home yet and its been over two weeks now. Limit visits for a while longer- at least a week. All the visitors will have plenty of time to see here. If you do allow them sooner than later, be strict about wellness and hand washing.


Anyone else have a baby on caffeine notice any side effects? I'm wondering if her being so gassy is related to the cafcit. Or maybe it's normal for a newborn to grunt and cry with every poop?? She only gets breastmilk and her meds but maybe it's something in my diet?could be something your eating. Maggie also grunts w/ the pooping

Is it normal for babies to "hum" or snore when they sleep?yes to a point

She seems to be crying more here than at the hospital. She's consolable but I wonder if maybe she is mourning or missing her hospital environment as it was her little home for a long time.Again, give her at least a week to get acclimated to your home enivironment. It took Maggie a good week to get used to home. So limit visiting again for this too

Her monitor hasn't gone off here yet. I hope it's working correctly and she's just doing really well. She is!

[boscopup]

Yay! Marlow is home.

Hooray! :)

How long should I wait to announce her being home to the rest of the world? I'm worried that everyone who has been waiting to see her are all going to want to come visit at the same time. (our NICU didn't allow any visitors that weren't the parents or grandparents).

We announced it right away, BUT... we told people that visitation needed to be limited because he didn't need to be exposed to germs and such due to immature lungs. The hospital said to keep him away from the public (ie, stay home) for 6 weeks (which put us right at his due date), so we told people that. The only people that could come visit were the people bringing us dinner each night (and if they held him, they had to wash their hands first, and some even said they changed clothes before coming over, although I hadn't asked them to do that). Other relatives got to come over once and see the baby, and grandparents got to come a little more often (but they too got to see him in the NICU - my parents did his 9pm feed for a long time).

If someone calls and asks to see baby in the first week without bringing food or anything, I'd just say "Can you come in a couple weeks? That'd be better for us.", giving you time to settle in with your new bundle of joy. I think lots of people coming over that first few weeks - whether baby is preemie or full term - is a bad idea. Mom and baby need to bond and get settled into a routine, etc. Visits can wait!

But the key with a preemie is to stress to people that your baby has immature lungs and REALLY doesn't need to get sick, so visitation is not desired until baby is a little older. I didn't have any problems with people wanting to come over just to see the baby those early weeks. If they weren't part of the dinner-providing group, they just waited until I brought him out in public for the first time.

Is it normal for babies to "hum" or snore when they sleep?

Joshua was sometimes pretty loud when sleeping. It did make it easier for me to know he was breathing at least. :wink


She seems to be crying more here than at the hospital. She's consolable but I wonder if maybe she is mourning or missing her hospital environment as it was her little home for a long time.

One thing to remember - the NICU is LOUD. Your home is probably very quiet. You might turn on the TV or radio for some background noise, and try to keep things not TOO quiet. :)

It does take some time for baby to get used to the new surroundings, and I think it is normal to fuss more at home than at the hospital. I've even seen full term babies do that - ones that were rooming in and everything. They get home, and the first night is AWFUL. I think it's just part of making a big change.


Her monitor hasn't gone off here yet. I hope it's working correctly and she's just doing really well.

Sounds like she's doing great!!! :) Congrats on having her home!!!

[fireant]

Limit visits for a while longer- at least a week. All the visitors will have plenty of time to see here. If you do allow them sooner than later, be strict about wellness and hand washing.



We've only told immediate family so far but I'm a bit uncomfortable about them visiting too.

I'm worried that my ILs will not be well and they don't seem to recognize this. My MIL is a school bus driver and always seems to have bugs. My DH's neices and nephews tend to have colds often as well. I'm working on really stressing the importance of washing hands to them. I'm also concerned that my MIL smokes and she may have the smoke in her clothes too. I hoping that because the baby is premature I can hang on how much more sensitive and susceptable she is to catching things.

They are coming to our house this weekend (my MIL and FIL) so I need to practice being very firm about the healthy baby thing. I know they love her and mean well but they are clueless on some things and I need to get a backbone with them (thankfully DH has one and now that he's a papa it has spikes too).

What do you guys tell people who come to visit and once they arrive appear to be unwell? or if you saw a cold sore (or something) on someone that was going to kiss your baby what would your immediate protect-the-baby response be? I feel like I'm going to have to address some issue this weekend and I want to do it correctly and firmly to make sure Marlow is safe.

Thanks for all your help!

[fireant]

The only people that could come visit were the people bringing us dinner each night.

That's a great idea...how did you get people into making you food? Does your answering machine explain that requirement? I wonder if people would follow our diet when making our dinner (I'd hate to find bacon hidden in the salad or something :( )


One thing to remember - the NICU is LOUD. Your home is probably very quiet. You might turn on the TV or radio for some background noise, and try to keep things not TOO quiet. :)

Another great idea! We just took that advice and turned on the radio and she loves it!!! It put her right to sleep after a fussing episode. thank you!!!

[sehbub]

Sorry I've been out of it ladies...for some reason the thread wasn't showing new activity!

I know you've already gotten answers for Marlow, but we experienced a lot of the same things. We can't sleep with Sam :( because she can't sleep in the dark and quiet, and I can't sleep in the light with noise. So, she sleeps in her room with the door open and hall light on and a fan in the window for white noise (and ventilation, of course) and we sleep in our room all dark and shut up tight. She's just across the hall, so it works for us. And in the morning, my husband brings her to me on his way to work, and we kangaroo in bed for a few hours before we start our day.

Sam seems to be gassier on the days that she gets her cafcit. Then again, she's incredibly gassy to begin with because I have to give her formula (grrrr) about half the time since I can't pump enough milk to feed her.

The monitor is a tool of the devil!! Sam figured out how to pull her leads off, and was doing it three or four times a day, so I finally used a small piece of medical tape over each lead to hold them in place. She hasn't had a true brady in almost a week, and that was only when she was eating. I'm trying to convince DH that she's fine and really doesn't need to be on the monitor, but he's terrified that something will happen and we won't know about it. So, we'll wait until they tell us she can come off of it. Until then, she's a tad cranky and screams every time we come at her with new leads. And I can commiserate with her..I SO love the feel of a cordless baby!!

As far as protecting the babe, I'm starting to master the deft hand-over-the-baby's-head move. If someone moves in to kiss/touch/nuzzle her above the waist, as many people try to, I gently sweep my hand in front of her face and push their hands/faces away with a smile and a "please only touch her feet. She's very small and could get sick easily, and many bugs aren't noticed until they're full blown." My other DDs, 6 and 4, tell everyone who comes in to the house that they have to wash their hands if they want to hold the baby. Our 4 year old has followed a few visitors to the bathroom to make sure they used enough soap and got "good and foamy." It's best, IMO to make sure people know, before they get near the baby, that they are not to touch the baby's face, chest, hands, or stomach. I let people touch Sam's feet only because it's doubtful that she'll get her feet in to her mouth, and she gets wiped down after each visit anyway ;) The hospital wouldn't allow someone with a cold to be near the babies, so why should you have to? Grandparents or not, our baby's health comes first!!

Sam rolled over the other day! All the way off the couch! :o My brother was watching her while I was upstairs pumping, and when he turned away to take a bite of his burger, she rolled off the boppy and to the edge of the couch. Luckily the ottoman was shoved against the couch, so it stopped her from falling off and hitting the floor. Instead, she slowly slid down to the floor as her 5 pound body scooched the ottoman away from the couch. She was totally unfazed by this, and slept through the entire thing, but I am WAY too young for a heart attack! She's also starting to have more awake time. She spends a good hour and a half or two hours awake every day now. She doesn't want to eat or try and nurse or be cuddled, she just wants to lay there and look around. It's fantastic!

Sorry to be so long-winded...I think it's the sleep deprivation!

[boscopup]

That's a great idea...how did you get people into making you food? Does your answering machine explain that requirement? I wonder if people would follow our diet when making our dinner (I'd hate to find bacon hidden in the salad or something :( )

This is something that the ladies at my church do for every mom after the birth of a child (although they waited until he came home for me, since I was recovering sans baby and had no trouble making dinner right after he was born). One lady volunteers to coordinate, and then she gives any food restriction instructions to the other ladies. For example, one lady at church has a dairy allergy, so when she has her kids, we have to make sure there's no milk or milk products in the food we make.


Another great idea! We just took that advice and turned on the radio and she loves it!!! It put her right to sleep after a fussing episode. thank you!!!

Oh great!!!! I'm so glad it worked well for you. :)

[boscopup]

I'm worried that my ILs will not be well and they don't seem to recognize this. My MIL is a school bus driver and always seems to have bugs. My DH's neices and nephews tend to have colds often as well. I'm working on really stressing the importance of washing hands to them. I'm also concerned that my MIL smokes and she may have the smoke in her clothes too. I hoping that because the baby is premature I can hang on how much more sensitive and susceptable she is to catching things.

My FIL smokes too, and I told MIL to make sure he changed his clothes before seeing the baby, so the clothes would be smoke-free. I also wouldn't let him hold the baby without a blanket between baby and his clothes (needed that anyway since he had reflux and spit up alot :lol).

Stress to your inlaws that your baby has very immature lungs and that getting so much as a cold could land her in the hospital again (granted, that is probably exaggerating... DS came home with a stomach bug and didn't have to go back to the hospital, and he did have colds during his early months, but it was at least after his due date and he was ok).

Is school still in session where your MIL drives buses? In my area, school is out already. So maybe your MIL will have less bugs if school is out there too?

Oh, and don't forget the line "The doctor says..." If you tell them the doctor says not to do something, they're more likely to not do it. :wink

[sehbub]

Oh, and don't forget the line "The doctor says..." If you tell them the doctor says not to do something, they're more likely to not do it. :wink

:yeah: Works every time!