Frustrated with Feeding Schedule

[ginnys_mommy]

I just posted an intro to me and my daughter but this deserves its own, less-emotional, post I think. I'm EP for her, and since she was dropping weight this gets fortified for her and put into a bottle-- they won't let me breast feed her because they want to monitor her intake. Her feeding is the only thing keeping her from coming home. I talked to the doctor last time we were up there (Saturday) and she told me Ginny needs to be taking 250mL during a shift, all PO (as opposed to NG), before they will feel comfortable releasing her. What's begun to frustrate me is the strictures they've placed on her feedings. They do "cluster care", meaning she gets woken up every three hours to eat (she's not a demand feeder yet, if she ever will be) and have vitals taken and diaper changed. She sometimes is able to finish the 45-50mLs they want her to take in every three hours, sometimes not. I asked her nurse how long she usually let her feed for, and if she would wake her up if she fell asleep during a meal. She said she gave her 15-20 minutes to finish the 45-50mLs and would wake her up during that time if she fell asleep but after that put the remainder down the NG tube.

To me, this feels like not enough time is being given for her to eat SO MUCH, and that they're kind of giving up on her and not giving her the opportunity to get her "required" 250mLs/ shift in. The speech pathologist has assessed her and determined that she has no problem with suck/swallow coordination. It seems like just a time/stamina factor. Not surprising she's tired for as hard as she's worked and as much as she's overcome in the past almost two weeks!

I would like to propose to the docs that she be offered 25-30mLs every hour and a half and see if she can tolerate smaller, more frequent meals better. It's what I would do if I was caring for her at home... which I kind of wish they would let me do. I don't mind the idea of having to feed her less volume more frequently if that's what she needs-- I'm not a nurse that has other babies to monitor and needs feeds to be on a time limit, I'm her mom and she's my first. I have the time and the will. I just need a way.

Is it too much to ask that they try this schedule? Should this "problem" with intake be the only thing keeping her from coming home? What risks would there be if they were to send her home now? What if a non-NICU baby who'd been sent home normally was having a problem like this-- would they be admitted to the NICU or monitored at home?

Thanks in advance for any help you can provide.

[Bokonon]

I completely understand your frustration. It is my understanding that the 3-hour feeding intervals are because low-weight and premature babies expend too many calories eating more frequently, which is also why their feedings are limited to about 20 minutes.

The problem you could face with her getting released before she is consistently taking feedings is weight loss, in which case she might be readmitted.

My DD had been gaining very slowly in the NICU, even after taking all her oral feedings, so she had to stay a little longer. It was so frustrating. She finally gained 2 ounces one day and was released. We were NICU vets though, so they knew that DH and I knew how to take care of a preemie at home, and get a preemie exclusively breastfeeding, which helped.

She was discharged at 4 pounds, 6.4 ounces, after a birth weight of 4 lbs. 8 oz. She ate very well once she was home (way more often than every 3 hours!) and at her weight check at 5 days post-NICU, she was 5 pounds, so we were in the clear.

Good luck, I hope she is able to come home with you soon!

[DocsNemesis]

What Bokonon said is true, they worry about them expending too many calories and such. However, for us, it was a bad practice.

My ds was a 32w 6dayer and lost weight in the NICU for quite a bit. He was moved to the step down nursery at 2 weeks old and finally started to gain, but very slowly. I finally took him home (AMA) at 4 weeks old. He'd only gained a few ounces over his birth weight there.

Once we were home, I did exactly what you are talking about. I let him eat when he wanted and how much he wanted. I didn't push it, although I would wake him up if he was out for a 3 hour stretch (except at night-I have 3 other kids so when he was out at night, I was too!). I also took out the supplemental formula they'd been giving him and the vitamins. Luckily I have an awsome pediatrician and she had told me I could do all this and just bring him in in a week for a weigh. Beyond that I just took him to check whenever I got worried.

Concidering the age at which she was born, I wouldn't be so worried about her using too many calories. She either was or was very close to full term. I don't know why you couldn't treat her more like a typical baby-although I wouldn't be surprised if she's extra sleepy the first few weeks. I can't really explain why, but my son woke up much more often once he was home...it might've been all the noise around her or something, or maybe that I held him ALL the time at first and anytime I had to move to get somethng, it'd wake him up.

Anyway, the result of this was him gaining almost 4 pounds over the next month. Obviously for him it didn't hurt. The thing to remember though is that every baby is different. While it worked for my son, it doesn't mean it would for you.

What if you took her home AMA and then she started losing or still wasn't gaining? Could you bring yourself to take her back to the hospital? Is there a closer hospital to you with a less intensive nursery? It doesn't sound like she needs the full out NICU anymore. That might be a good alternative-ask about her being transfered. Can you stay at the hospital? I know every hospital is different, but both of the hospitals I had NICU baby's at had some option-the first had a teensy room for me to stay in and the second had private rooms, so I had my own giant room with the baby, lol. I'm just wondering if her feeds would increase if you could be kangaroo caring for her.

Oh btw, when my ds was sent home, he was only intaking 75mL's every 3 hours. They said this was normal...he was also close in weight to yours (4lbs 13oz at birth, 5lbs something when sent home, I can't remember anymore!).

[Momof4kidz]

As frustrating as it is, what the NICU is doing with her feeding is in her best intrest. Preemies expend precious calories just feeding, and they can lose weight, have spells of apnea, bradicrdia, and desats if pushed too hard. She will get there in her own time. My 33 weeker was born at 4 lbs 5 ozs, and she lost down to 3 lbs 8 ozs at 5 days old. Once she started to gain they started to give her more chances to feed from a bottle. She was discharged at 10 days old weighing 3 lbs 14 ozs and on 24 calorie breastmilk with 2x weekly weight checks with her ped. At 1 month she was 5 pounds and we started breastfeeding... she nursed for 2 years and 7 months and never had a drop of formula in her life.

DS was 32 weeker and he was a pro feeder. He was on 100% oral feeds by 4 days old (this is NOT the norm for a 32 weeker!) At 8 days old he came home. He weighed only 3 lbs 10 ozs; thus he only had to be taking 35 MLs every 3 hours. He started nursing the day he came home (as well as a few times in the NICU) and he just turned 2 and is still breastfeeding strong.

Personally, I would not demand they feed her less amount more often. I WOULD however do as much kangaroo care as they will allow, and ask them if you can nurse. When I nursed they would take the time he nursed and calcualte how much he had. If he nursed a full 20 minutes, then he got a full feed. If he nursed 10 minutes, they gavage fed him half of his feeding. Ask about doing this. Also, ask if you can give as many bottle feeds as your able to. There are things you can do to stimulate the suck reflex. Rub under her chin if she pauses for more than 10 seconds, or gently twist the nipple in her mouth. You can also wiggle her head a little, rub her cheeks, or anything like that that helps stimulate that sucking reflex. I big part of taking a preemie home is convinging the NICU staff that you are able to care for them at home. This is why I was able to take DS home at just 3 lbs 10 ozs; and 33 4/7 weeks gestation. I should mention that he never had any spnea, brady, or desat spells and that played a huge roll in his early discharge. He was my 4th preemie, and I knew I could care for him. Be confident at what your doing, she IS YOUR baby!!

In the end though, you must be patient. If she isnt quite ready, then she just isnt quite ready. Its so frustrating, I know, but before you know it these NICU days will be a thing of the past. ((((hugs)))) and good luck!

[plantmama]

I stumbled on this post, I haven't been a nicu mom for awhile.
First off it sounds like a hugely traumatic birth so don't diminish it just because there are people worse off than you
Is there any way you can be there every day? I'm surprised you can't stay in the RM house. It sounds so tough! 2 hours is really far!

My son thrived once he got home, so I agree that should be your priority. I'm confused why they aren't letting you breastfeed.
My ds (who was born at 30 weeks almost 6 years ago) was also on a feeding schedule in the nicu. Once we got home he nursed ever 1-2 hours and was over 8 lbs by his due date. He gained sooo much once we got home. The nicu is just such an incredibly stressful place.
BUT, we just had to get through it until he was ready. Hang in there, she will be home soon I bet.
I know you might not have much control over this, but I felt like the more a parent was there the sooner a nicu baby was released. So try and get there and push a little for breastfeeding and definitely do some kangaroo care etc....
Good luck!!

[DocsNemesis]

Yeah, definitely trying to get in as much kangaroo care as possible.

I also don't understand why they won't let you breastfeed. The hospital my ds was at encouraged it. They would weigh him naked before and after to see how much he got and then gavage or bottle feed the rest. Going on time alone doesn't seem like a good idea...sometimes he would nurse for 30 minutes and only get a small amount and others, he'd go for 5 and get almost a full feed.

I honestly don't understand the 20 minute thing for her daughter. She was almost full term. This isn't a 30 weeker here....I mean, my son was a not quite 33 weeker and they never once limited his feeding time.

I hated the NICU too and I held at as long as I could, but sometimes hospital policy keeps them there longer than necessary. I know I'm not the norm here since everyone else seems to feel the best route is waiting until they say ok, he/she can go home, but use your own head as well. She may very well need more time there, she may not. None of us can tell you. However, do keep in mind that you ARE her mom. If you insist on doing kangaroo care, they can't stop you. If you insist on breastfeeding-at least trying it-they can't stop you.

The thing that stands out to me as a constant questioner of medical care practices, is that every single hospital has its own policies and its own ideas on what is ok and what isn't. This isn't proven science-this is hospital policy. If it were the same everywhere and we all knew this stuff was totally true, ok. But we don't. As I said, they never limited my son's feeds (and he was born more premature and smaller than her baby), they also had a policy of not offering oral feeds until preemies hit 34 weeks, which seems kind of dumb-since as you can see, some preemies younger than 34 weeks take to oral feeds fine. They wouldn't let him do more than one oral feed a day, working up to 8 oral feeds a day-which only slowed that part of the process. They did encourage breastfeeding. They also encouraged holding/kangaroo care. He also could hold his own temp from the beginning, yet they kept him in an isolette for a week...despite them having to turn it down to room temp to keep him from overheating. Why? I have no idea. What eventually kept him there an extra 2 weeks was a small desat every few days. I just couldn't take it anymore and took him home (after a long discussion with the doctor there and my own pedi). Again, it was hospital policy-no desats, at all, for 5 days. Honestly that particular policy seems good on paper, but in my sons case, it was pointless-the doc himself said he was in no danger.

Anyway, my point is, this was all soooo different from my other son when he was in a NICU an hour away at a different hospital. Their policies were totally different. So are the hospitals 10 minutes away. It varies so very much. I'd take some time to find research, studies, whatever you can, find info on this on your own and weigh what you find. This is what I did. You might find that something about her case makes it important to stay there. You might find the opposite. I'll take a bit and see if I can find anything on the feeding/weight gain parts of it.

Hopefully she'll start gaining some chunk and you won't even need to worry about it!

[waldenmommy]

Here's our story:

My son, number 3, was born at 35 weeks, 1 day and pulled the wimpy white boy routine. He had RDS and needed surfactant and a vent. His feeding sced was much the same as your dd's. It did go against the grain, as I bf'd my older two on demand for over a year each.

He was discharged at 9 days. Honestly, I think they sent him home too early. He was eating by the breast (with a nipple shield) on demand. He was going home to a very experienced bf'er with LOTS of support. I don't recall if he had met the 48 hours with no ng tube rule, but I know he had gotten all his feeds by breast or bottle for 24-36.

His weight at birth was 6-8. I THINK his discharge weight was 6-15; I know it was over his birth weight. He left on a Saturday; on Monday, he was 6 pounds, 9 ounces (or so). A week later, he had dropped. He dropped below his birth weight and had trouble maintaining his weight. We were in the dr's (with two other children, during cold and flu season) up to three times a week for weight and bili checks, which kept rising- IN SPITE of bili treatment in the hospital. I was seeking advice from the dr, our chiro (lol), LLL, etc. We were supplementing every feeding, using probiotics, etc.

I would rather have spent an extra week in the NICU and avoided that he ll.

He began to gain weight around his due date and is now a giant porker. The more mature, GA wise, she gets, the better she will eat, ime.

[DocsNemesis]

Again, though, every baby is different. My ds did horribly when my breastmilk was being supplemented, he just would not eat much at a time and as a result, lost a lot of weight and didn't gain much. I've heard a few others on here say the same...but at the same time, others did need it. With my little dude, the supplemental formula seemed to fill him up early and keep the food in there longer or something. I dont know. When I took him off that (and the vitamins, which would make him throw up with the next feeding, lol), his intake tripled.

You definitely want to watch her weight once she gets home though, regardless of the route you take. You don't need to obsess over it or anything, but make sure you keep an eye on it, especially if you change her feeding routine like I did. I had the blessing of my ped and got him weighed weekly the first few weeks. After that, I treated it like I would a full term baby and just took him in every few months.

Its also difficult when you first transition to breastfeeding full time. I had nursed 3 kids before this but switching from bottles, where you could see exactly how much intake they had had to breast, not having any idea how much they were getting...it was nerve wracking the first few days.

Btw, my son is still rather small but is the biggest piggy ever! He LOVES food and will eat all the freaking time if you give him food...I dont think I've found anything he doesn't like. Including grass.

[Lousli]

Originally Posted by DocsNemesis

I honestly don't understand the 20 minute thing for her daughter. She was almost full term. This isn't a 30 weeker here....I mean, my son was a not quite 33 weeker and they never once limited his feeding time.

If you read the OP's other post though, it sounds like her baby was born quite ill (emergency c-section after decreased movement, pneumonia, pulmonary hypertension, RDS, etc.) So maybe in terms of getting her to eat and not expend too many calories her health factors into it?

My 36 weeker was about the same size at birth as the OP's baby, but never was in the NICU and although nursing was tricky at first, she was demand-feeding by her due date. My younger one was earlier and in the NICU and breastfeeding was hell. So I'm kind of thinking if the baby was 36 weeks or almost 36 weeks and healthy, this wouldn't be an issue, but it has more to do with the circumstances around her birth.