Home › Forums › Infant Reflux Support › Hip, Hip, Hooray! We're having a good day! › We are back in NY…
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April 22, 2006 at 8:48 am #6562AnonymousInactive
I had written a long post yesterday and then the computer froze and it got deleted… but here it goes again.
The flight was great… i have to thank my dad again… he called a cousin of his at Iberia and managed to get us upgraded to business… yeah!! everyone was amazing and they were concerned because of the tube and they helped out so much… i think that it would have been impossible to feed him through the tube in the back of the plane as it was packed and there was so little space. And Matthew behaved!! He took his nap and then was out for the night later (we are dealing with jet lag right now and some sleepless nights but i heard somewherre that it can take up to 10 days to get a baby back on a schedule when traveling, so we are being as patient as we can).
We saw our new Gi – DR sockolow…. we were so nicely impressed. I dreaded changing doctors but i think we are going to be in good hands. She was with us for an hour, she listened to everything we said. She even told me i was such a good mommy for having baby on the tube and putting it in myself etc. She also said it was great to see a mommy so concerned and who remembered all meds and dates etc so well… she made me feel good about what we were doing!! She hugged Matthew, played with him, told us stories about babies etc etc.
She wants us to increase calories a bit as Matthew is on the 10% curve but something like 80% for height and 90% for head. She said that she wants a little bit more meat. Fine with us. She was also happy with the schedule of feedings and the variety. She has referred us to a feeding clinic — she said the best one is in Baltimore but Matthew is taking food orally, so probably we can do well locally at one in Patterson, NJ. She said they are great and her assistant is working on setting it all up for us. She thinks that it may be a combination of lack of appetite (i used to wear size 10 when i was 16, so was always ultra skinny as a child and so was my brother) and a feeding aversion from the pain in the past. She will not give a stimulant until they are at least 1 year old because she says that it does tend to make them drowsy and babies younger than 1 should be alert etc.
She upped his prevacid. I told her about our trying to wean him 10 days ago and she said that if he was having crying fits without prevacid for 4 days, then the reflux is there and it is not mild. She wants us to do 30mg one day and 15mg the following day… she gave me a prescription for 30mg a day in case we want to do that as she will fully support it — she said that a min burn can prevent him from eating and he needs to be 100% healed or under control for the therapy.
She gave me a prescription for 10 feeding tubes (she took a look at it and recognised the size… that makes me confident she knows what she is talking about) and some Duocacl adn she said to make the formula up to 30cal. I think we were doing 28cal or so so she said to go up and start adding duocal to the fruit he takes and keep using oils if we want for the purees.
She said that she is happy with the NG tube for now. We have to see her in 6 weeks again, and start the feeding therapy at NJ as soon as possible and take it from there.
So, i felt like she will be great. She was caring, she spent so much time with us, she never rushed us, she wanted to see Matthew play and walk to make sure she saw nothing else… she told us we have such a happy baby and that we are doing a good job and that we will work on getting that tube away as quickly as we can.
On the feedings… she said bolus, no continous. She said that if the babies can take it (some cannot handle the amount in their tummies), then bolus is the way we eat and if Matthew does well that way, to continue. If he is not eating anything, then we have to give him 32 ounces of 30 calorie formula, divided in 4 feedings but if he refluxes too much due to teh amount, then do the rest as continous feeds at night.
Sorry for the long post… as soon as we go to the clinic i will let you guys know what they say.
April 22, 2006 at 9:24 am #6564AnonymousInactiveSo glad you got back safely and Dr. Sockolow sounds great and really on
top of things. Let me know when you’re settled and I’d love to stop by
and say hi with Marisa. Big hugs and hope Matthew keeps improving.April 22, 2006 at 11:24 am #6572AnonymousInactiveThais,
It sounds like everything is going great with the new doc. She seems to really know her stuff. Its obvious she really cares for her patients if she is willing to spend so much time for one appt. I think the most time we have ever gotten has been 10 or 15 minutes!
How many calories per day is Matthew supposed to be getting? How many calories per oz can you make his solids? Noah is in the 8th percentile now and I just cant get anymore volume in him. I’m giving him 24 oz of 30cal formula per day, plus I’m adding butter and forumula to his solids. I can only mangage about 900 – 950 calories per day. He is so extremely active that he burns it all off.
April 22, 2006 at 4:04 pm #6579AnonymousInactiveThais, I’m glad that the flight and the doctor’s appointment went so well!
April 22, 2006 at 4:39 pm #6582AnonymousInactiveKaren – hopefully Matthew will be on a somewhat schedule soon… maybe end of this week? If the weather improves, would love to have you guys out in our patio. (tracy and anyone else in NY who wants to hang out, you are welcome too!).
Lisa – unfortunately, have never really calculated calories although i know that more than 1,000 is def what Matthew needs… we do have the tube, so we can get into him what we need. She said about 32 ounces of 30cal + whatever he will take by mouth. He is doing fine on that amount on his tummy for now (but he is not eating much, so it is just really formula). we are also adding tons of oil to solids + duocal to fruit… who knows. Wish i could help you out. Matthew is SO active too.
Kim – thank you. It is good to know there is a doctor that cares!
On another note, we decided to visit a naturopath. I actually have always believed in alternative medicine and it occured to me that we had nothing to lose. So we went today. Spent about an hour there telling him symptoms, my pregnancy, matthew’s personality etc. He was entering data in the computer because all the repertoire is there and remedies match the symptoms. Anyhow, we have to give Matthew some belladona everyday. He showed me the remedies that he woudl recommend and then ones that the repertoire showed. He said he was not surprised… half way through the visit he said Matthew’s eyes were amazing, the way he looked, how open and alert they were and how expressive he was… and said something relating to eyes would come up…. and he said belladonna was used by women to open their eyes and make them look so much more expressive… who knows. Anayway, we have to get back to him in a week and then we are giving the remedy 2 weeks to work and if there is no change we will try something else (he specialises in children and is a nutritionist so we are hoping something helps here!).
April 22, 2006 at 6:19 pm #6584AnonymousInactiveThais, good to hear from you. That is wonderful news about your new ped. Maybe you should post her name under the doc. referral post in case someone else may be in need of her services. Nice to find a doc that listens and you don’t have to fight with about increasing ppi dosage. Thinking about doing some alternative medicine myself, could you post your progress with that? Thanks!
April 22, 2006 at 6:43 pm #6585AnonymousInactiveHi Thais! Glad the trip back to NY went well and that your doc is on the ball. Keep us posted on the naturopath, we saw one a while back but I don’t think she was very good…didn’t really have any suggestions for us. Are you still making Matthew’s solids, or are you using jarred? Does he mind the oil in the solids (is it olive oil)?
Hope things go well and that you enjoy being back at home.
April 22, 2006 at 8:00 pm #6587AnonymousInactiveEnjoy being back at home! Glad to hear that you like the new GI!
April 23, 2006 at 6:44 am #6596AnonymousInactiveThais – we’d love to come hang out on your patio – Marisa would have a
blast! Just let us know when you’re settled and ready – and yes,
hopefully weather improves soon – this is miserable..April 23, 2006 at 7:55 am #6603AnonymousInactiveSarah – we did not even ask for an increase and she recommended it! Yes, nice to know that someone out there understands that med is good when babies are in pain. About naturopath, yes i will keep you updated. He said to give the belladonna a couple of weeks and see if anything changes (either in his sleeplesness, restlesness, no eating etc). If no change, we will have to try something else.
Lori – i make his pureed veggies and meat. He does not seem to mind the olive oil but we do put in salt (as per ped recommendation). Otherwise the taste of the oil is too strong. At night, we used jarred fish and also add oil. He eats whenever he wants, and not much right now… but he is taking around 10 ounces of formula a day by mouth, so not all via tube right now. Don’t know if the naturopath was good or not but he has offices in about 3 states and seems to treat children for all kinds of things… so we are hoping for something.
Janice – i have caught up on Samantha. Seems like things are going well. Hope the head scar has healed by now
Karen – i hate this non-stop rain. We took a trip to the mall yesterday so that we could get out of the house and Matthew did not open his mouth for lunch… oh well… syringe feeding him through the tube was fun in the food court… i think people were just amazed and did not stop looking but he had a great time at the stores 🙂
April 23, 2006 at 8:51 am #6615AnonymousInactiveI am so glad that you found such a great dr! I hope this will turn things around for Matthew!
April 23, 2006 at 8:54 pm #6651AnonymousInactiveThais – I am glad to hear that you are back in NY, and found a good doctor for Matthew, hope Matthew can be back to normal schedule soon. I lived in NY for 2 1/2 years, and my family are still there, I really wish Brian can eat like a normal kids soon, so I can go back to NY to visit my family and catch a break. Where can you buy the jar fish? I found parasite on fresh fish twice already, it was so disgusting, and I can not find frozen filet fish (as you mention that is more safe). I do put olive oil in Brian’s solid from time to time, but I am afraid to put too much, because his nutritionist mention that oil is difficult to digest and make reflux worst, did Matthew’s dr mention to you about that before? If they say it is ok to do that, please let me know, then I can put more oil into his solid.
April 23, 2006 at 9:53 pm #6659AnonymousInactiveSharon, we did hear that as well. But they told us that it’s a fine balance and that each baby is different. It’s basically the concept that oily foods in and of themself can cause heartburn (as you might remember from your pregnancy), but some babies don’t mind it. You also have to watch out for the taste and texture. Adding too much oil can make it slippery and difficult to swallow and can also impact taste (making it taste bad). But it’s a great source of calories. If you are going to try it we were told just to add a bit and see how she reacts to it. You can also add butter and margarine to veggies which tastes good as well.
April 24, 2006 at 8:47 am #6682AnonymousInactiveSharon — the fish is actually from spain…. they make jarred fish so it is great and i took several jars with me. As for the frozen fish, i have not looked in the supermarket here, but will take a look and see if i find soemthing and let you know. As for the oil, there are about 90 calories per 10grams. That is a ton of calories…. and we usually fry the meat for example in oil and then add about 5cc of oil (i think about 50calories) or so. That does not make it slimmy.
According to my ped, the oil when it is not cooked, should not make the reflux worse. (you know, olive oil is all about mediterranean diet). If you add it after the food is made, and do not heat it up, it should be fine for his lilttle body. (that is what we have found anyway). So Lori is right, but according to my ped, only if the oil is fried etc does it make things worse.
April 24, 2006 at 8:54 am #6683AnonymousInactiveWelcome back, Thais! Glad things are well and you have transitioned to a fabulous doctor!
I am sick of the rain, too, and again, a dreary day! Our lawn needed it, but I need sunshine more!
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