Feeding Schedule

[Anonymous]

Thais – sounds like it went really well and they had some good ideas –
I’m so glad! Keep us posted and let us know if the Mylanta helps with
his straining. Also – if not, are they going to try MoM or something
else?

[Anonymous]

Susan,

That’s a fabulous idea, the two ounce bottle. Where did you find it? Maybe if Myles had a tiny bottle to hold himself, he’d drink more. Who makes it? I saw a preemie bottle once that I thought was two ounces, but I haven’t seen one lately. Actually, I could try one of those little 2 ounce bottles they send you home with from the hospital. I still have a few. Thanks for the really terrific idea!!!

ndrose2006-5-16 21:11:52

[Anonymous]

Thais,

I am so happy for you and Matthew! The feeding program sounds wonderful. They really seem to know what they’re talking about. Regarding the crawling, I do believe that it’s true. The more they develop the upper body muscles and torso the stronger the digestive system and the sphincter will become. Interesting about the duocal…does that also go for polycose? Also interesting about the poop, because this has always been the situation for Hailey. She has always had a VERY hard time passing stool, even when it is just mush. Every doctor we’ve seen has told me that this is normal, that it’s not constipation, and that she’s just learning how to pass her poop and that some babies, especially babies with weak esophageal sphincters also will have weak peristalsis and rectal muscles needed to expel poop. They keep telling me this over and over so it’s interesting that they told you otherwise.

I’m so happy for you guys and wish that we had something like that here. The program sounds really great. As for the brutal car rides, I hear you… it’s awful to drive so far for the appointments. Please keep us posted, if you don’t mind. Maybe something that they tell you for Matthew can help us out too.

[Anonymous]

Thais – It really sounds like a wonderful program. Brian has a hard time to past poop too, he usally has one every other day, so I think maybe that is why he got blood in his stool. I still don’t understand the connetion between feeding and straining poop, I wound like to ask a few questions and hope you do not mind. 1) Why do they want Matthew has 2 poop a day? 2) Will that help him eat better? 3) Did they said that why does Matthew need to strain even soft poop?

I remember you mention about feeding clinic in Baltimore, we are about 1 and 1/2 hour away from there, maybe we should go there.

EAD waver is not a feeding program, they send nurses to your home and take care children with medical need, so mothers can take a break.

[Anonymous]

Lori – the car ride will be tough but i think they will be excellent. I really liked the people we saw and also the other mothers that were there for the daily program were all pretty happy! I have no idea bout polycose… i will ask next time i am there. They say that Duocal can delay emptying and for a baby that is never hungry is not good either. On the OT, well it can never do any harm right…? We will get it once a week and it will help matthew somehow i am sure. I told the nurse that i was always told by doctors that red face and straining was normal for babies that age; she said that if babies are eating well, then they do not care. But if babies are showing limited intake, they want to make sure that they are passing the stools with minimal difficulty. Funnily enough, his diagnosis is CONSTIPATION in the paper the nurse wrote… so we are starting with mylanta and will move to other things until we can get the 2 soft stools with min pressure.

Sharon – oh i have heard of the respite (I think that is what it is called) service. Some people on the other board have children with greater problems and they get a few hours a day. For now, we can afford some help, so will look for someone a couple of hours a day (my husband is travelling most of the week, so a couple of hours to take a good shower etc would be awesome!). Don’t worry about the questions… I guess they have some type of protocol…. ie when a baby does not eat, and has or has had reflux, they look first at the medicines, then they look at the poops and then the volumes. These are the three things that we discussed in this appointment. All trying to see if there is anything wrong with the digestive system.

On the meds – they said that even on Prevacid, baby can be uncomfortable; if he is uncomfortable, there arre a couple of things that will make him feel worse: the wrong volumes (she said some babies do great lett’s say on 190ml a feeding but you give them 200ml and it is terrible so we will play around to find out best volume, if possible) and then too much pressure somewhere in system. Because when baby is straining he puts pressure on the lower abdominal that in turns puts pressure in the upper digestive system and if the baby is still uncomfortable, it is going to make him worse. She said that if we can get rid of the straining and try to control the reflux and play with the volumes, then we can be sure he is most comfortable to eat. Once we are there, we can start trying feeding therapy in itself.

I hope that makes sense…? They just sometimes think that babies are not as comfortable as they should. She said that Matthew has feeding aversions (he stopped eating yogurt and fruit and fish) and that because he is still getting these aversions he is still not totally pain-free.

[Anonymous]

I bought the 2 oz bottle at The Family Dollar store of wich there are
many around my area. But wouldn’t Walmart of Babys/Toys are us have
that size?

Let me know if you can’t find one and I can send yi=ou one.

[Anonymous]

Sharon

Kennedy Krieger Institute is supposed to be the best of the best…where do you live?

[Anonymous]

Thais – it really sounds like they are on top of things and had some
good ideas – I hope this gets Matthew on a great path and feeling
better/eating.

How much Mylanta are you starting with? What are they moving onto if
needed? MoM? Miralax? Just curious. As I just posted in a separate
update, our new Ped is having Marisa have fiberjuice – literally
regular juice (they have apple, orange, grape) with a lot of added
fiber.

As for help, I had a great baby nurse who has worked a lot with
sick/elderly people as well. i’m not sure of her availablity but I’d be
happy to pass along her name/number if you’d like. We only had her for
a week as a baby nurse after Marisa was born but thought she was quite
good.

I’ve heard GREAT things about St. Josephs and grew up not too far from
there. BTW – my parents go to a really good Spanish
restaurant/steakhouse in Newark (not too far from Paterson and St.
Josephs) called Don Pepe’s. They love it (I’ve never been) so if you
ever want #/address let me know.

[Anonymous]

Thanks Karen – we cannot do juices unfortunately… nothing that is not formula for now. They have not said and i have not asked… i have decided that we are taking a back seat on this one. We are going to take everything one step at a time and concentrate on the current recommendations and then we will see! I think we are in good hands and i know that Matthew is going to make it (in his own time obviously) so this is just to help things move faster. I will let you know if it does not work. We have to do between 1/2 and 1tbs a day.

Thanks for the baby nurse… but they are so expensive! And i am not working right now…. we are trying to get someone just a couple of hours a day… we are also just looking in larchmont now as hopefully we will be there next month! Thanks for the offer….

If we ever start the day program, i am gong to need things to do during the day while he is in therapy… so remind me then!

[Anonymous]

I agree that you are in good hands and also agree sometimes with taking
the back seat – which is sort of what we are doing with our new Ped! I
really do think they will get Matthew back on track (and yes, it will
take time but still). When do you go back?

That’s right – I forgot about Larchmont. When do you move? We have to all get together again before you do!

[Anonymous]

Ahhh..I long for a day when I can get myself to relax and take a back seat too. It’s so hard when info is so available and sometimes (my doc in point) they’re wrong! But sometimes they’re right and it’s better just to listen. Sigh.

Thais-I’m so glad it was helpful for you and you sound so positive! It’s really great. Did you get to see Dr. Eicher the head of program-she’s awesome! (Although she still hasn’t returned 3 phone calls-and she told me to call…but I still like her). Ian does the same thing with tummy time, crawling, kneeling, etc-grunts, cries, screams. We are such sissy’s that we don’t push him too much but probably should. They saw Ian earlier and he was on target then but we’ll probably contact Early intervention here in NYC because NJ is so far for us on a regular basis and we don’t own a car (too bad you’re moving – we could have taken road trips together!). He also was still eating ok at that point as well so they saw him on a “good” day. What does the smaller feedings mean? Meaning let him eat 2oz if he wants but maybe keep trying for 6 or 7 but sometimes the difference of an oz will cause pain later? When Matthew stops at 2oz does he look like he’s in pain at all? I know what you mean also about hard to believe. The day Ian vomited blood, I swore up and down for weeks reflux wasn’t bothering him-never saw it. You’re going down to just one solid? Which one? Great on growth btw!! Yes, I also think poop is related. Ian’s stool always goes to water before an episode ( so opposite of pressure).

Keep us posted!

Tracy (Ian’s Mom 9-26-05) Prevacid and Elecare

[Anonymous]

Thais – Thank you for the explanation. I know how hard it is when your husband travel, my DH just came back tonight from 1 and 1/2 week of business trip, and he said there are many more to come.

I live in Norther Virginia area, I heard that it is a long waiting list to get in feeding clinic in Baltimore. Brian always eats well in front of other people, so when I tell others that he has feeding problem, they think I am crazy, the ST said because he senses my stress and he becomes very stress during feeding time with me.

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