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My Daughter was put on a feeding tube in Feb when she was in the hospital with RSV. At 10 months old she weighed 9lbs 6oz when released from the hospital in Feb (her birth weight was 2lbs 15oz). While she was in there they kept her a few days longer after the RSV was done peaking and she was turning the corner of it to help address her feeding issues. She was never a big eater and nothing we tried would make her take more. She would average 8-10oz of formula in a 24 hour time period. She simply had no interest in eating but was perfectly happy. All tests have come back normal from the GI and Endocrinologists so we haven't a clue. She is NG tube fed at night. My DH and I put the tube in each night and having a feeding pump that pumps all night long. She gets 400cc a night on top of what she will eat by mouth. My twins are 13months old (11 1/2 months corrected) and currently Sarah weighs 15lbs 2oz (she has gained over 2 lbs in 4 weeks) and her twin brother is 22lbs 8oz. This last month she has taken off eating better. She's up to about 20oz of concentrated formula a day (they won't put her on Pediasure yet due to age) and 4-6oz of solids and still gets 14oz pumped at night. There aren't any explanations for her slow growth. The Endo refers to her as an SGA baby (small for gestational age) baby. He wants to include her in a study and continue to follow her as she is one of the cases he and other dr's are researching to see how SGA babies grow. He said that sometimes SGA babies are just small and there aren't any reasons and others have very noticeable issues to explain it. She may be a candidate for Growth hormone between the age of 2-3 but it's still to early to tell if she will need them. She is very happy and doing well finally so we are just keeping on doing what we are doing. She has a PT (once a week) and nutritionist (every two weeks)that come to the house. She sees a GI every 3 weeks and Endo every 3 months. She was just cleared from the Neurologist so that is one Dr down. Sarah was originally in utero diagnosed with hydrocephalus but once she was born they found that to be incorrect. She had a cyst in her brain that was resolving towards the end of my pregnancy and has since completely resolved so no more Neurologist since she has no problems brain wise. She does have a heart defect called a coronary artery fistual where the coronary artery branched off to early and is leaking a bit of blood back into her heart. She is followed by a Cardiologist every 3 months so far they know her heart defect is not affecting her growth as everything is normal there. They are waiting for her to get bigger to do further tests to see if they may have to do surgery to stop the blood flow to prevent any issues in the long run. But for now we just keep going and hoping she will get bigger as time goes on. So far she's turning the corner but we just take everything day by day.
How frustrating. I know that I don't have a big diagnosis for Brandon as of yet. Other than he has Optic Nerve Hypoplasia, Nystagmus and Hypotonia. I have been frustrated with doctors as well. He has seen an endo, a neurologist, opthalmologist, and his regular pediatrician. Although, honestly at this point he is not technically FTT but he is still very small for his age and still does not eat very well.
How tall is your dd? Is she growing in length or is she small in length too? Does she eat any solids yet?
I am glad to have you on the board. I hope we can be a support system for you and your little one.
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