I had posted recently about coming off neosure but when we saw the Ped today he wants them to continue. He is concerned about the smallest one, she is not keeping up with her curve and her growth is now linear (per ped). She is almost 6 months age adjusted (born at 32 weeks weighing 3lbs 7ozs) She now weighs 14 lbs 10 ozs. Her wt is ok but the curve issue is concerning. Has anybody else had this problem? She is weighed every month before her RSV maybe the frequent weighings are changing the curve.

Mary

I don't know much about a linear growth rate, but I do know about falling off the curve. It is sometimes a phase they go through, but you need to keep an eye on it. I would take his suggestion about keeping her on the neosure for a while longer...but take the other two off if given the OK. Also, when giving her baby food, make sure you give the bottle first and give her every opportunity to drink more. Thankfully your Pedi is watching her closely. If she doesn't pull out of this, let me know. I have all sorts of tricks for getting extra food/formula in poor eaters!

Susan

Parent to GGG born 31 weeks 4 days 4/26/07




http://www.thedivinemercy.org/message

  

Well Sandsstone please tell me what tricks... I am still having a time!

Mine are only 4 months old but they were taken off neosure at 2 months and their weight gain has dropped off drastically. They have not gained but about 1lb in the last 2 months, which normally its supposed to be about 1.5-2lbs per month. We are having a hard time with one of them getting her to eat due to severe reflux and she has actually lost weight. The other 2 are gaining VERY slowly (about 1 oz per week in the last few weeks) but their weight has not gone down yet. If there is not a concern that they are gaining too much weight then I would leave them on it. You can strengthen any formula to 22 (or more) calories per/oz though if they are having issues with it. Mine are on alimentum and I started strengthening it to 22 calories and it gave them diarrhea and then my daughter ended up in the hospital last Saturday getting IV fluids because she was dehydrated from the diarrhea and not eating enough.

Shely~ Mom to 1+bbg

Shely,

Please tell me that they did some tests on her while she was in the Hospital...I hadn't heard anything from you (which is bad news...I know I've been there...they eat a good bottle and you want to shout from the rooftop...they don't eat and you feel like a total failure) I completely understand where you are at, and it is such a hard spot. Mary isn't there yet, so she may not need all the tricks. Hers aren't refusing the bottle or have reflux...she is just having trouble getting one to eat enough at 6m adjusted. I am so sorry your trio are not improving very fast. Increasing the strength of the formula to 22 didn't bother mine, but when they had me increase it from 24 to 28 and from 28 to 32, they did tell me to do it over a week to let her adjust to it. It really could be that your daughter has become so sensitized to any large chain proteins, that she needs the next step formulas. I keep praying that they find something that works for you...it is such a rough time.



Mary,

My SIL is going through this now, and is coming out the other side of it. Just offer the formula first, and you may have to go back to waking them up at night to get a bottle in them 12-2am was a great time for us to get more into ours. Distractions while eating are also helpful for when they don't want more but need it. Really close up to a TV, walking around while feeding, the ceiling fan, (going outside in the summer) anything to distract them from what they are doing. If they are eating solids, cereal has more calories per OZ than anything but meats...but it takes a while for them to digest...giving it to them after bottle and as the last meal before bed is where it fit best for us food wise. We often would give a little fruit/veggies in the morning for practice...but there aren't many calories in there.

I can add many more specific tricks we used if you need them, but hopefully like my SIL's little girl, this will be a short term issue.

Susan

Parent to GGG born 31 weeks 4 days 4/26/07




http://www.thedivinemercy.org/message

  

The only thing they did was a CBC and it came back fine she was just dehydrated. The doctor thought maybe the nipple was too big and gave me a nuk nipple to try and it worked for about a day and then she changed her mind again. I went to the new pedi last week and he put her on bethanechol (sp?) its supposed to physically tighten the stomach sphincter so that they can not reflux, but I am having a hell of a time trying to find a place that can fill it and that takes our insurance. We found one place but they have to order it to compound it and its going to take till the end of this week, the beginning of next week to get it back ugh. Then he said to go ahead and start first foods, which is fine but if she isnt drinking enough I can't give her foods or then she really won't eat, plus as soon as it hits her belly she vomits it back up. I am trying to get ahold of our PPO to see if I can self refer and call and beg a peds GI to get her in ASAP.

Shely~ Mom to 1+bbg

At this point, driving her somewhere where there is a Pedi GI sounds like the best shot. Insurance is the issue though. There are some tricks you can use...like driving to a city with a Pedi GI and taking her to the ER of the hospital they use...and that at least gets you in the door and seen by specialists who at least will call the Pedi GI. Perhaps the insurance Co. will suggest a place to go? If not keep asking for their superior...eventually you will get someone that will realize that waiting 6m for a starving baby to see the doctor is insane.

When my DD was hospitalized we had an MRI, blood tests galore, ultrasound, urine tests, fecal tests, and a second swallow study with lower GI follow through.



Susan

Parent to GGG born 31 weeks 4 days 4/26/07




http://www.thedivinemercy.org/message

  

The hospital I went to is where one of the peds GI has privileges and they wouldnt page him. That was my thought that if I could get her in the ER and see how severe it is (and they did) that they would call him in and they wouldn't. Medical care in Oklahoma sucks!

Sorry to take up your question Mary...

Shely~ Mom to 1+bbg

Sorry to suggest this...but do you have friends in another state?

Susan

Parent to GGG born 31 weeks 4 days 4/26/07




http://www.thedivinemercy.org/message

  

Yes, we have friends all over the place... unfortunately the closest one is 700 miles away, several states away... I just called and begged them to get her in sooner and they said the most they can do is to put her on the cancellation list and I will have to bring her in short notice... which oughta be interesting considering my husbands car died and he has to take the sequoia and I have no help so yay!

Shely~ Mom to 1+bbg

Shely, I can't believe the ER would not page a Peds GI. Maybe you could have your ped call request an earlier appointment. It's difficult to do but if you call and bug him with questions every day you may get resolution more quickly. I work in a medical office and sometimes that's what happens.
Susan, thanks for your advice. I started baby rice and prunes this evening after bottles. They all loved it. It's funny watching their faces react to a new taste. Your girls have the same birthday as mine but we are 4/26/2009.

Mary

Shely,

Hey, we are in Dallas and have had some of the same issues. The best GI Pedi guy here from what we have heard and from personal experience witnessed is a guy named Dr. Michael Russo, we saw him at Childrens in Plano. He is TOUGH to get into see but it may be worth a shot. He had our son, diagnosed and dialed in right away. Not sure where you are in OK, but this guy would be closer than 700 miles. If you need any more information please let me know, I would be happy to forward it along.

Todd

Proud father to BBG triplets, born 33 weeks, 2 days on 7/9/09.
Claire
Matt
Drew
http://themesserletrio.blogspot.com

I hope your DD is doing better. My B/G/G were born at 32w5d and the littlest was 3lb 10 oz at birth. At 22 mos she is approaching 23lbs. (at 18 mos. (last ped visit) she was 20lbs). She was on neosure until she was a year. (The other two I had on regular formula after 9 mos. as they were gaining fine.) I actually told my ped that her weight was linear and not on a curve. Every 3 mos or so she gains 1 1/2 to 2 pounds. She's still about 5 pounds lighter than her brother and has been for about a year now. She had some what appeared to be silent reflux issues, which resolved somewhat when we started solids at 6m actual. Because DD's weight gain is linear, sometimes she's on the chart and sometimes not (she's in 80th percentile for height). They suggested pediasure to up the calories and she wouldn't drink it.

If you're trying to add weight (and she eats okay) here are things that are high in calories that we tried: avocado (actually DD prefers guacamole, but it has peppers and can be quite spicy), full fat cream or half n half added to mix whatever cereal you're giving, and full fat yogurt (Fage is our favorite). I added a scoop of neosure to every bottle of milk once we switched too to boost the calories per bottle. Good luck and remember every baby has their own curve!

Debi