NICU Rant/question - Corrin Update

He is a CUTIE! All that hair!

OK-I think you have every right to discuss any concerns with the neonatologist that you have. But remember that this IS a NICU. These people are not pikers when it comes to babies. Does that mean you should blindly follow any & all advice? No. Speak up! But you gotta give credit where credit is due, right?
Listen to any & all facts and get facts & opinions from the docs.
Good luck!

I have had 2 babies in the NICU, and both were able to eat at LEAST 3 oz (90mL) within a week of birth. You have to realize that these NICU nurses and neonatologists do this EVERY DAY and take amazing care of some VERY sick kids. I trust the NICU teams we have had more than just about any other health care professional I have ever encountered.

You can disagree, but what is your basis? Do you have research to show that your opinion about it is correct?

(my 2nd son drank a 2 oz bottle within 45 minutes of birth--NOT exaggerating at all).

Before you ask for the orders to be changed ask for a family meeting and ask them to explain how they determine goal rates for feedings. Also ask any other questions you may have. That's the easy part. The hard part is to then LISTEN TO THE ANSWERS with an open mind. You might be surprised to hear that their explanation makes perfect sense, and they are, in fact doing everything they can to help your child recover. HOpefully that is the case.

When nurses advance a person's feed rate they often check a "gastric residual," which is when they draw back on the feeding tube to see if there is any left over liquid in the stomach. If the person has a lot of residual liquid in the stomach then obviously they are not absorbing, and they can not tolerate any more tube feeds at that time. The tube feeds will be put on hold until the gastric residual is below a certain # of cc's. On the other hand, if the tube feeding is absorbed well, and there is no gastric residual (or its' a small amount) then it is safe to resume tube feedings. Of course they also monitor stool output, bowel sounds, abdominal distention, firmness of the abdomen, etc. If any of these assessments were out of the ordinary they would not keep giving feedings. I'm not a pedi nurse but I assume the GI assessment for adults and kids is similar.

I know you are going through a rough time, but I'm not sure what you are upset about.
Newborns can eat 2-3 ounces, per feeding, at least 6 times per day. That's every 4 hours. Some newborns eat every 2 hours.

You say he is awake and happy.
I mentioned in my last response that my little grandson was born with a lung infection and had to stay in the hospital. It was very scary, but his doctors and nurses knew what they were doing.
Having worked in the OB ward at a hospital and seeing the level of care that babies receive, I think you should talk to the neonatologist, but also be willing to listen.
My daughter was so distraught about not being able to take her baby home (from a different hospital than I worked at) because he was SO CLOSE for days, but in reality, close doesn't cut it when they are releasing a baby.
My grandson was finally released and has had NO health issues whatsoever. He had a rocky start, but he was tended to according to what his care required.
I don't know that you can "change" a physician's orders.
You can refuse care for your child against medical advice.
You'll be having a meeting with Child Protective Services before that happens and I say that because I've seen it happen.
As far as getting a second opinion, you can demand it. Chances are that the pediatricians at the hospital have already conferred.
If you believe your child is being harmed in the hospital, for being fed, you need to be able to back that up.
I am NOT trying to be mean or lessen your concerns at all. I promise.
I went through this with my own grandson in May and my daughter, God bless her, did not handle her baby having problems very well.
It was traumatizing for her.
She hated the I.V.'s because they hurt him, she hated the oxygen, she hated him crying because they poked and checked on him all the time. She hated the nurses for not leaving her baby alone.
HE survived the whole thing just fine and is the most beautiful and healthy baby you ever saw.
His medical team knew what they were doing.
They did it swiftly and they were diligent.

He's healthy now because of it.

I think that you need to write down all of your concerns. You have a right to them. You really do.
Get them off your chest. Try to get some rest.
Also be open to the possibility that no doctor or NICU nurse on the planet wants to do anything to your baby that isn't necessary.

That's just my opinion.
I wouldn't wish this on anyone especially after going through it with my own daughter and grandson.
There is light at the other end.
Your baby is progressing.
That's a GREAT thing!

Best wishes.

Mama - The NICU is where I learned to be a parent. My son and I stayed at Children's hospital here in Seattle for almost 2 months. I also had a boy on an NG tube. He was 3 weeks old. I don't remember how much he was being fed, but I remember thinking that I didn't agree with what they were doing and had to speak up and ask!
YOu must must must talk to them. Talk to the doctors, talk to the nurses, talk to your child's pediatrician. There is nothing wrong with asking questions and there is NOTHING wrong with not agreeing with them. Bring to them any statistics you may feel are important and ask questions.
Remember also, these doctors are not here to make your child stay in the hospital longer than he needs to. They really and truly love their jobs and want children to be sent home as soon as they medically can be. They want you to be a family unit AT HOME just as much as you want to be at home.
Good Luck to you and your baby.
L.

Thank you so much for the update on your son, Corrin. I'm thrilled to hear that he is doing so well! Although I'm a Nurse Midwife, I worked L & D, Postpartum and NICU many years ago when I was an RN working my way through grad school. A good rule of thumb for maintaining body weight in a newborn is that the baby needs 2.5 oz of formula or breastmilk per day for every 1 pound of body weight. So based on his birth weight of 10 lbs 13 oz, he would need between 27 and 28 oz per day (810 mL to 840 ml per day) There are 30 mL per fluid oz so 80 ml is really just over 2 1/2 oz and is very reasonable and conservative estimate of his needs. Your son needs to take in more formula/ breastmilk than the average newborn to maintain his body weight. Please ask your nurses and Drs. to explain things to you. It's overwhelming to you I'm sure, but I never felt threatened or annoyed when a parent genuinely had a question about the care of their baby. Best wishes for a happy homecoming soon.

Hi,

I am sorry you are upset with the feeding issue. I think you should remember that neonatologists and NICU nurses do this day in and day out. They have the same goal as you--to get your son home asap and as healthy as he can be so he can go home. Please get some support from your family and friends and allow the doctors and nurses to do their job. They won't overfeed him. They go through 10+ years of medical school and training to get to where they are. I think your being upset and your feelings are misplaced. Try to breathe and if it makes you feel better, get a second opinion. Best wishes and I hope that Corrin comes home soon!

Well... couple points: (Please, do read down to #3, even though 1&2 may tick you off)

1) My 3 week old son was drinking apx 20oz (TWENTY, yes, not a typo) PER feeding every 2-3 hours. (We were part of a breastfeeding study). He was 10lbs at birth and 12 or 13 by week 3. Some full term newborn infants can only manage an ounce or 2, most can do between 3 & 8. A couple ounces is the bare MIN. So when you start off on the basis that in order to live/ not be 'failure to thrive' you need at least that much (80ml) and can go up to 10-20oz per feeding... that's a "Relax..." set of numbers... not necessarily a 3mo feeding schedule. 60-80ml is a preemie bare minimum goal (4-5lbs). A healthy 10lb newborn usually goes for over 200ml.

2) NICU babies -even full term- tend not to eat well for a couple reasons. A: they're stressed out, and the increased adrenaline, just like in adults, shuts down the hunger response. Well... they still need the nutrients to be healthy. Unlike with an (most) adult patients, with NICU & PICU patients you can't tell them "I know you're not hungry, but you need to eat anyway." Instead you NG them, and work toward getting them eating the bare minimum even under the huge amount of stress they're under. B: Babies tend to be in the NICU for a reason that makes them tired. They're using every bit of available energy to heal/recover and the physical act of sucking and swallowing is just too much. So even if they ARE hungry, they turn and refuse to eat more because they're just too tired.

3) As to how much sway a parent has... QUITE a lot, to a certain point. You're there 24/7, and most good NICUs consider (and even title) parents as "Parent Caregivers". Parents tend to notice things first, and hold onto all the little bits of info from the course of the day in their minds, only have 1 patient, and aren't taking notes from a previous shift. MOST NICUs consider you part of the team with a full 'vote' in your child's care. There is, however, a VERY steep learning curve... and a lot of sleep dep. The line at which parents are disregarded is in 2 places: a) when it will cause the child harm without question and b) when they are completely and totally distraught/furious/losing it. If you're completely emotional, staff assumes (mostly correctly) that you're not thinking clearly and at the VERY least need a break, a sleep, or an eat... and most will flat out refuse to listen to a word you say until you're able to calm down and present your thoughts clearly. Even if that's just an "I can't think right now, can I have a little bit of time to process, and we can revisit this in a few hours?"

4) 2nd opinions are common. If you're not at the regional children's hospital, grab your 2nd opinion from THEM. If you are, then you've got the hands down best staff available in 3 states... so jump departments.

Hugs!!! Handsome little guy!

My boys were in the NICU - i was pumping so they gave my boys what I pumped and they only supplemented them with formula when they told me to sleep the night through instead of coming back every 4 hours....it was hard to stay away - but the best thing I did because I got sleep...

Instead of going in like a bull in a china closet - go with NICELY with questions...it's OKAY to ask questions...you might learn something about WHY they are doing what they are doing when you ASK rather than go in hell bent for leather....remember honey, not vinegar...

.

I don't have any advice to offer because I've never been in your shoes. There are 30 ml in an ounce so 60 is 2 oz I know lots of new babies that were taking between 2-3 oz. Ask them nicely about it but to me it seems about right.

And Corrin is beautiful!!!! I can't believe how alert he is!

Just ask them nicely. You have every right to question anything anyone is doing to care for your child. NICU staff are used to being questioned. My boys were not in the NICU, but they started off eating 3oz basically from birth. Ask the doctors AND the nurses. The nurses are very often the ones who really know exactly why something is being done, when and what. Of course the doctors should be able to explain themselves, but remember -these are people whose daily job is to keep sick and tiny babies alive and get them to a point where they can thrive. You have instincts and as I said, you should certainly ask questions, but they do know what they're doing in a NICU.

For entirely different reasons, my daughter's pediatrician was concerned about her caloric intake. I asked if, rather than plying her with so much extra [formula] is there was something we could add to my pumped milk to give it an extra boost. They gave me Enfamil EnfaCare (for babies born prematurely) with instructions to add 1/2 tsp per 45 ml of expressed milk. Perhaps they would be willing to try this alternatively?

Well I spent lots of time in the ICU with my sister and believe me I questioned things! Of course go in with a nice attitude, but don't let them blow you off either. They are doing a good job, well probably most of them ;) But at the same time this is your child. I remember watching my sisters IVs and telling them the were about to blow, they said 'oh no, no, they are fine'. What do you think happened?? I would make them do things on the drs orders that they didn't feel like doing etc. So maybe it is fine, but I'd ask and not stop until I was satisfied. One time they had my sis on IV fluid for 6 days and hadn't fed her bc she kept getting bumped for g tube surgery. I finally told them if they didn't feed her I was getting a spoon and pudding and doing it by mouth and taking my chances. Do you know they didn't realize it had been six days? So they fed her immediately. So yes be nice, but be firm, your little one deserves it and they aren't God.

What a cutie & so alert! Follow your instints, mama, but don't be afraid to trust either. Ask questions until you are satisfied he is getting what he needs. Please let us know what happens.

Well,, Im not sure about the 2 ounce limit.. When my son was born, he weighed 9.2. I breast fed him and when he was less than 2 weeks old I was able to hand express 5 ounces into a cup to pour into a bottle for daddy to feed him. He drank almost all of it in one feeding. I have a picture of him drinking that bottle and I remember the cup I squirted the milk into, so know it was that much.
I know you have way more medical background than I have, so you probably know this stuff. I had a friend who had twins. 1 was less than 2 pounds and I know they put food in with a tube, (didnt want her burning calories sucking) and after a certain ammount of time they suck it back up to measure and see how much has gone down into the intestines. It shows just how much the baby really was taking. Is there any chance they are doing this and you didnt know, or see? If they are doing this, they might be over feeding so they will get a better idea of how much he is using. He is a big guy and might be eating more than your average 6 pounder . When I had my son, 1 nurse told me because he was so big, he had lots more amniotic fluid in his stomach and wouldnt need to eat the first 2 days. Another nurse told me because he was so big he would need to eat sooner so until my milk came in she wanted to give him formula. I took the bottles when she brought them to me but never opened them. I nursed him, and he got whatever I had that first 2 days. Then my milk came in and he gulped and swallowed and choked on it coming so fast and then slept all night. I suppose if I hadnt planned to breast feed I would have started with bottles. Those little things have about 4 or 5 ounces I think.
As for the parents holding any clout. Id say you better be a big part of babys health care team. You, the Dr, the specialist, the nurses. You all get a say in what happens and how. Especially if you listen to them, and give your opinion, and show them how much you really do know, and that you arent some silly 17 yr old first time M.. I hope things smooth out fast for you and Corrin and he is home with you soon.
Hope youre getting some sleep too, He will be home soon and you might not have a chance after that. Hang in there. (o:

You'd be surprised what some babies can eat at such a young age. I had to leave my two week old daughter with a babysitter so I could complete a graduate class. I sent a ton of breastmilk, and when I asked how much she ate at each feeding, she ate FOUR ounces at each feeding (she, too, was a large baby at 10lbs 7oz). She wasn't forced to eat it, she willingly took it at only two weeks old. I was shocked, but each baby is different. The NICU is trying to do what's best for your baby, not keep him there longer than he needs to be.

I think they need to explain themselves. There may be a medical reason for it, but that strikes me as odd, but I'm not a doctor either. If a baby doesn't want to feed they always tell you not to force feed. If it were my baby they would have to explain themselves very thoroughly or I'd be pretty mad about my child being filled with food like an overstuffed pillow. You probably don't have a huge amount of clout, but that doesn't mean you can't say something or get a second opinion. Just run your situation about the baby to a different hospital and see what they say, as much details as possible will help them give an opinion. Like I said, there could be a reason for it and maybe it's medical so many people won't just know the reason except for the medical field. I think the 2 ounce rule may be myth as well, my daughter ate more than 2 ounces when she was a newborn. Talking to them will give you a clear idea of why and what is going on with everything. It's not the amount he is being fed it was more that he didn't want it and they forced fed him that made me raise an eyebrow.

I was a nicu nurse before moving to the picu, and I still work in the nicu about once a week (they are busy; we are not).

Nicu docs are kind of crazy about feeding. Since he wasn't a preemie, calories & learning to eat aren't really the issues. If he's not having large residuals prior to his feeds, then he can probably tolerate that volume. But if he won't nipple it, then he probably doesn't want it.

My suggestion would be a compromise to the docs. Keep the volume the same, but space the feeds to every 4 hours instead of every 3. If his weight holds steady, then he should be fine.

And if he's not on oxygen anymore, they could let you put him to the breast, and weigh him (before & after) to see how much he's getting. He might like that better than a bottle nipple.

They may want the extra calories in him if he's fighting an infection - you mentioned a lung infection?

I don't have the answers you are looking for. I just wanted to let you know was thinking of you and your family and wishing you all well. I couldn't find your name, so I was searching for a while!
Hang in there, and if it is of any comfort to you we are praying for your baby and you.

My experience with my niece was this. When I told my brother to say to them how many ways are there to say NO. He told them NO. And, the next day they sent his baby home. It was a four week siege. And, of course she was delivered at 28 wks but she weighted two kilos (4.4 lbs)
They did everything they could until they got her sick.
Refuse to let them over stuff him. If you can take him out of the incubator tell them you are going to breast feed him. Then call LeLeche League and someone will come to the hospital and help you get started. That will be the end of the force feeding. And, that is what my SIL did.

I am not sure how many weeks premature your infant was but if they keep feeding the baby that way, it interferes with promitive reflexes being integrated and this will eventually lead to sensory-motor issues of the mouth and body. It could lead to speech/language problems. All they care about is gaining weight and getting out but they do not realize that they will send you home with a half cocked infant who is disorganized because it never got the suck, swallow, breathe reflex correct in the first place. I hope a pediatric OT and SLP is seeing your child daily. Make sure they put your baby on tummy to increase respiration, digestion and strength and to start to integrate reflexes. The body never forgets early trauma and a NICU stay is ALOT of trauma.

I think they are being unreasonable. My twins were in the NICU after they were born, so was my toddler. One of my twins, Sean, wasnt able to finish enough of his bottles so he had the NG tube as well, he came home with his and had it for about a month before I decided he didnt need it anymore. I, personally, felt that if he had more incentive to finish his bottles then he would get stronger on his own to do it. after about 2 days he was finishing whole bottle about 90% of the time and he was gaining so I was really glad that I decided to take it out. It is such a pain to have to put it when they pull it out, tramatizing for everyone. I would think that your input should go a long way. They should at least have some kind of a rationalization as to why they want to feed him so much. If he weight is stable and he is healthy weight wise and growing like he should then I see no reason why they feel the need to give him so much.

Back in February all 3 of my boys got RSV and the twins ended up in the hospital for 5 days, they had a really hard time of it. Anywhoo, we only have 1 vechicle, my hubby didnt have any time to take off of work and we also have a 2 1/2 year old, so it was hard to stay up with them for long time frames because also we couldnt take our toddler up there with us. The boys are used to me being the main one to feed them since i stay home with them. So they practically refused to eat at all for the nurses, if they could get them to take an ounce at a feeding they were doing good. When I was there they were both finishing bottles, so it was obvious they didnt have any feeding issues, they just wanted momma. Well they had OT come in and she made an order that the nurses couldnt use the bottles we use for them, even though we had brought them up and I told the nurses the tricks i use, that they could only use the special Haberman feeders. I was livid, they HATE the Haberman now, they had to use them when they were first born because of their clefts, but have been using the NUK nipples since they were 2 months old and do great with them. This OT even posted up flyers in their room of how they were to be fed and that the nurses were NOT to use any other way. I got there and one of the nurses had told me that. I said are you serious? She looked at me and said "You are their mom, you are the boss. I'll feed them the way you want me to." Needless to say she was my favorite.

So, now that I have rambled on and on...I would seriously talk to the Neonatologist about your concerns and not back down!!! Good luck and I hope Corrin comes home soon!!!!!!!!!!

my son spent some time in the nicu, and he digested food slower since his oxygen level was low (he was also on a canula - he was born with premature lungs). he was fed 3-4 ounces at a time, and then like an hr or so later they would suck the undigested food out of his belly so it wouldn't make him vomit. he would also reject the bottle sometimes and they would tube feed him. are you in an area with a children's hospital? if you are i would have him transported there. if you are in a children's hospital i would definiltey have a talk with the dr & nurses as a team to find out why they are doing what they are doing. maybe they have a logic behind feeding him so much. remember you are his parent, not them, so demand they tell you the reason for everything they do.

i also remember the nicu we were at being very warm. many of the babies in there are so teenie tiny they need the extra warmth to grow. we dressed less warm and dressed our baby accordingly in there. many prayers for a quick recovery for your little guy!

How cute!!!!! I'm so glad to hear from you!!!!!
Don't you have his own pediatrician that you can double check?? I do not have experience with NICU but I remember my son was supposed to have 30 mls as soon as he was born every 2-3 hours and he refused to drink all that... Check with the neonatologist tomorrow but I'm sure they just want the best for your son....
So... how do you feel now???
Good luck and keep us posted!!!
N.

I had 2 babies who spent time in the NICU. My first was on a respirator and and IV for feeding at first so there were some big issues with feeding. I agree with you that the medical staff can be a bit rigid about feeding--both the amount and staying in a schedule. If I recall correctly they calculate how much the baby needs to eat based on weight--whatever number of calories per 24 hours. How much at each feeding depends on how often he eats. They may be able to adjust the schedule so he has smaller feedings more frequently. But I thought the hospital staff really pushed to make the feedings larger and farther apart if they could.

My son was 9 lbs at birth and over 12 and a half lbs when they finally released him at 10 weeks. By the end they had him up to 120 ml or 4 oz. I believe and ounce is 30 ml. So getting him from 2 to 3 ounces seems like they may be pushy but not totally unrealistic. But ask the staff to explain their reasons and tell them your observations (How do you know he is full? give specific observations). Also, my son had reflux so we needed to sort that out too. Trying to breastfeed or use some pumped milk may help. Also a lactation consultant or even a breastfeeding supportive nurse may be a good advocate with the other medical staff for loosening up the rigid feeding policy.

I also noticed that so many NICU babies are preemies or have health problems that make it hard to gain weight. The staff seems used to pushing the babies to gain enough weight to go home. So your 10 lb baby and my over 9 lb baby are/were not typical. My son looked about twice the size of the other babies in there. On the other hand the rigid hospital schedule did make my life easier when I brought my son home--he was used to a schedule and was nearly sleeping through the night by the time I got him home at 10 weeks. I did 1 feeding before I went to bed and he could sleep to 6:30 or 7 am--which is great for under 3 months old.

My heart goes out to you. Even though I have never had a child in the NICU, I have had family members who have. You are your son's health advocate. Voice your opinions. The whole idea behind the increased feedings is just to get his birth weight up so he can go home. That is all it is but if you are having a hard time with it then please ensure to let the specialists know your concerns so they can address them and give you a better understanding. God Bless You! Good luck!

Hi Pamala, I'm glad ya'll are doing okay!
What a cutie Corrin is!

I tink you have a lot of say in what goes on with his care... at least when Case was just in a couple weeks age, the nurses and doctors said that I did! I never had any issues to question them about but they were constantly asking me what I thought and how I felt he was doing!
Also, He was drinking 58 mls at each 3 hour feeding when he was there and thats the day he was born so the feeding size might not be too off. (He weighed 8lbs 9 oz)
Maybe, if ya'll are going to still have to be there for a while, you could see if you could be transfered to a different hospital. I LOVED everyone at the Childrens hospital! (besides one nurse)
I hope things get better for you! I know this has to be very hard on you and I'm sure you are ready to just be home and be able to take care of your baby the way YOU want to!
good luck!

Hi Pamela
He is so beautiful and alert like an old soul. As you can imagine a nasal cannula would drive anyone of us crazy.
State your concerns over the feeding issue and I'm hoping for you a speedy exit with him home so you can be fully in charge of his well being.
Wishing you and your family the best.
B. k