slow growth...need help!!!

[TTLLM]

I just had my 4th child, she is 25 days old today.  I nursed my first a month shy of 2 years, my second for 5 years, my 3rd is still nursing at 2.5, and now this one.  I have been nursing non-stop for almost 6 years, so this is not new to me at all. 

All my babies have been over 9 lbs. until this one, she was 6 lbs. 14 oz. at birth.  By the time we got out of the hospital (3 days later) she was 6 lbs. 4 oz. which wasn't quite 10% of her birth weight, so they were slightly concerned, but not alarmed.  At her home visit 2 days later, she was 6 lbs. 9 oz. so all was well with the world as far as I and the LC's from the hospital were concerned.  On the day she turned 2 weeks, I took her to breastfeeding support group to weigh her, and she was 6 lbs. 8 oz.  WHAT?  So, 2 days later they had me bring her in for a weight check, and she was 6 lbs. 9.8 oz.  All is well again, bring her to group to weigh her next week...so I did.  At exactly 3 weeks, at group, she was 6 lbs. 12 oz. so, since I would be unable to attend group this next week, I requested a weight check for yesterday.  She was 6 lbs. 10.2 oz.  Again, WHAT?  I nursed her and reweighed her, and she was 6 lbs. 11.7 oz.  So, this does not appear to be a volume issue. 

The LC is freaked out and send us to the ER where they attempt a spinal tap (fail), 2 IV's (fail) and do some blood work.  They admit the baby and the pediatrician on the floor says we are not going to go the route the ER was going and says to not retry the spinal tap, IV, and antibiotics they wanted to put her on.  But, because of what they put her through, she was very lethargic the remainder of the day and today too to an extent. 

What they wanted to do is have her nurse every other feeding and formula feed the opposite feeding while I pump, but I said "no" to the formula, and so they said there was something called human milk fortifier they were willing to add to my pumped milk...I had my suspicions that was a fancy name for formula, but I wasn't sure.  From what I've now read, turns out I was pretty much right.  Anyway, I went with the plan, as annoyed as I was with it.  It irritated me to no end that I could be nursing my baby, but no, they were off mixing up their concoction while I sat there with my screaming baby that just wanted to nurse.  They would argue with me if "this was the feeding where she could breastfeed or not" and wouldn't allow me to nurse her at times.

By the time the doctor came back in this morning, we had accomplished 3 of these fortified feedings plus the nursings and any nursings I was able to sneak in.  She weighed 6 lbs. 13.4 oz.  She, however, didn't poop a single time yesterday.  They then had me nurse her, and she nursed about 30 minutes.  The nurse re-weighed her, announced "no change" and zeroed out the scale without allowing me to look.  So, since they couldn't find anything via the tests they did (FYI, my 2 year old has congenital hypothyroidism), they decided it is her suck that is the problem, nevermind the night nurse commenting on how strong her suck was). 

They allowed me to take her home today, the plan is to nurse her, then pump, then give 1-1.5 oz. breastmilk with a "finger feeder" and every other finger feeding to add formula to the breastmilk to make it 24 cal/oz. 

I don't really agree with their conclusion, but what can I do?

Anyway, mostly I am concerned about her weight gain issue.  I know this isn't a sufficient weight gain.  I nurse her A LOT...we probably get in 8-10 feedings during the day and 1-2 at night.  Obviously they have decided this isn't a true medical issue, just a suck issue.  Any advice or thoughts for me? 

[foreverinbluejeans]

I'm so sorry. My children have a genetic immune deficiency disease and I had to deal with FTT at a large childrens hospital with them. They didn't have problems until they were around  10-12 months which is much easier than a newborn. We didn't know about the immune deficiency disease until I was diagnosed after my youngest was born and I had pneumonia and septicemia. They tested the kids because of the weird infections they had and the FTT. Our disease is called common variable immune deficiency (CVID). My only grandson turns 3 Sunday and he also has it. He only weighs 26 pounds. Some 6 month old babies weigh that much!

I had the most problems with the hospital and my youngest. We had hospitalizations, weight checks, they wanted him to have formula, wanted him force fed, wanted feeding tubes, all kinds of horrible things. It was a nightmare. I would tell them I was open to some treatments but we were going to keep breastfeeding.

Every scale may weigh a little different. It may help if you rent or buy a good scale so you know what is happening and arn't surprised when you get to a weigh in and they want to hospitalize your baby.

When you take your baby to the ER they want to do every test in the world. I am a former medical lab technologist, one son is a nurse, and another is a phlebotomist. Our dinner conversation is about all the stupid things doctors do. Don't let them do a spinal tap or blood gasses if your baby doesn't have a high (103 - 104 +) fever and they can't convience you there is a really good reason. Someone won't have bacteria in the spinal fluid or blood without a high fever. You can request they do the spinal tap in X-ray where they can make sure they get it in right. I've had it done in X-ray and it is much easier. Don't be afraid to let them put an IV in your baby's head, it can be an excellent site.

Since you have been nursing so long you can probably make a lot of milk. If you used a hospital pump when your baby was there and it worked better for you then it may be a good idea to rent a pump. After pumped milk sits it settles into the high fat milk and low fat milk. You could use the high fat milk that has more calories.

Of course you know that if your baby has a suck issue the worst thing to do is to give bottles or even use a finger feeder. If you were to nurse your 2 year old at the same time as the baby then the older child would stimulate the milk flow and it wouldn't matter how well the baby sucks as long as she doesn't choke. Just because they didn't find a medical problem doesn't mean your baby doesn't have a medical problem. You are an experienced breastfeeding mom and if you think she is getting enough milk and she still isn't gaining then keep trying to find if there is a medical issue.

You might try kangaroo care and put her in a sling or carrier with just a diaper on and your shirt undone so you are skin to skin. This can be done so you are decent. Then you can do activities with your family and get some basic things done.

When you have a baby with problems it is hard on the whole family and on your marriage. If you can afford it pay for someone to come in and help with the house and the older kids. When we were having a lot of medical problems my friends paid for a college girl to come in at noon and help with lunch and she played with my older kids and did laundry and fixed dinner in the afternoon and left at around 4. It was great. Don't forget to take care of yourself. I hope things get better soon.

[isabchi]

Do you check fot Tonge Tie?

[PatioGardener]

Originally Posted by isabchi 

Do you check fot Tonge Tie?

Tongue-tie would also be my concern.

[tashantx]

baby was weighed on different scales a couple of those times no? was baby wearing clothes? naked? same each time? I've found that if I weigh my son at different times of day that it can appear that he's ''lost'' weight (or not gained much) b/c the time before when I weighed him he had just eaten any chance that could be a factor in your case? poop can weigh an oz or two also. I'm sure you know that though. I third the tongue tie possibilty. How is l/o's output? plenty of wets and poops?  but I'd also greatly consider the scale differences and time of day weather or not baby had just eaten pooped etc....there is also the possibility that when baby weighed 6.8 on day 5 that the hospital scale may have said 6.4 still or less ....idk just random thoughts...how are you and l/o now?

[CheriK]

Wow, what a horrible experience for you and your LO.  It sounds like the medical team had an over-the-top reaction.  It seems like you're describing a baby who is still hovering somewhere around birth weight at 3 weeks old.  Concern?   Definitely.  Need to feed the baby?  Definitely!  Hospitalize, major invasive tests, etc?  Um, probably not.  I'm glad that at least they found nothing wrong!

It sounds like baby's been weighed on at least 4 different scales.  Honestly, unless you're comparing apples to apples (baby weighed on the same scale, in the same state of dress/undress, and ideally around the same time of day), trying to compare weights is not particularly meaningful.  Your baby is around birth weight, maybe even slightly lower.  We hear this scenario all the time, but these babies are almost never subjected to the hospital experience you and your DD had.

What's nursing her been like?  You note that she usually nurses 10-12 times in 24 hours, which is really typical for a newborn.  Can you describe a nursing?  Are you letting her "finish the first breast" by ending the nursing on the first breast on her own, then offering the 2nd?  Are you experiencing any nipple soreness or trauma?  Is she very active at the breast (mostly suck/swallow) or does she tend to fall asleep?  You're tandem nursing; are you making sure to allow baby to get hindmilk, perhaps by keeping your older nursling on one side for 1/2 the day, then the other?  Or, if you have oversupply (baby chokes, gags, pops off the breast when milk lets down) you might even have your older child nurse briefly to slow the flow and allow baby to start the nursing with higher-fat hindmilk.

You've been seeing an "LC."  Is this an IBCLC?  What sort of experience does she have?  Personally, I'd be looking for a private IBCLC with experience with slow-gaining babies and I would also as PP suggested have her evaluated for tongue tie, especially type 2 TT, by someone who knows what they're looking for. 

Are you adding milk fortifier to your milk or supplementing with formula?  If she's getting enough volume of your milk (3-5 oz per feed by this point, most likely), then adding formula is only replacing breastmilk.  Milk fortifier can increase the calorie content of your milk, but it's typical use is for preemies, to increase the nutrient (mostly minerals) content of the feed, not the calorie content.  Unless a crematocrit was performed on your milk that shows a low fat content, this is a really strange recommendation IMO.

You had one test weight listed (w/ a 1.7 oz change after feeding).  Was this on a scale sensitive to grams?  Unless the scale was designed for test weights, it isn't accurate enough to really detect milk transfer accurately.  An IBCLC should have a sensitive scale and can help perform test weights.  If it was a gram scale designed for test weights, and the feeding was fairly typical, then this is a low volume tranferred.  A 3-week old should be transferring about 3 oz per feed for most feeds, maybe 2 oz if it wasn't a great feed. 

[TTLLM]

Sorry, I didn't realize anyone else had responded.  We're desperate and I am looking for help, but not finding any at all! 

All the scales at the hospital are calibrated together, so any hospital weight should be fairly consistent.  I think I've made note of any other scales used, but let me back up and read what I've written again so I can catch up where I left off.  OK, all scales mentioned have been hospital scales so far.  All are naked weights. 

Since my last post, 2 days after release from hospital, she was weighed at 6 lbs. 12 oz. then the following day 6 lbs. 14 oz.  Thursday of last week, she was weighed at the doctor's office and was 6 lbs. 15 oz. and the doctor seemed pleased and released her care back to the family practice doctor we see.  Today (Friday) I weighed her at the hospital and she was 7 lbs. 2.8 oz. which is almost 10 oz. in one day under 2 weeks.  I have been only nursing her, not doing any of their formula or human milk fortifier.  The most supplementing I've done is one time I skimmed fat off pumped milk and added to freshly pumped milk and had DH give to her in a bottle. 

So, at 5 weeks, 2 days, she is only 4.8 oz. over birth weight, but she is content, bright eyed, smiles occassionally, wetting a lot, maybe not so many poops, though. 

They had me take her to ER again today where they did some blood tests and admitted her...after quizzing me on my psych history (none), asking me if I hear voices or wanted to kill myself, was doing drugs, etc...all because I was crying.  Of course I was crying, I'm worried about my baby!  In fact, one doctor suggested I don't care about my baby's health.  I'm the one who was worried enough to bring her in of my own accord!!! 

I had an LC check for tongue tie and she said that my baby doesn't have it.

[tashantx]

nak. hugs....how dare they treat you so poorly. That is awful! My son was similar and is still a slow gainer but has  days where he gains an oz. He regained his birthweight right around a month old so around 5 weeks he was pretty close to where your baby is BUT he didn't really start gaining well until about 18 days of age so O try to calculate his average gain based on that and go from his lowest known weight. I'm not sure if this makes you feel any better at all but you are not alone. I hope you find some peace and answers soon.