FTT and lung issues - Mothering Forums
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#1 of 2 Old 09-29-2009, 05:30 PM - Thread Starter
 
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Hello everyone, I am new here but have been replying a little. I am the mom of 4 amazing kids, all 4 born premature. My first was born at 35 weeks, my second at 35.5 weeks, my third at 33 weeks and my fourth at 32 weeks. They have each had their own trials and accomplisments, but that is another post entirley!

I am wrighting about my 3rd born. She arrived by emergency c section 5 hourse after I turned 33 weeks. My water broke without warning and she was breech. When I arrived at the hospital I was 5 cm dilated with her feet coming through the cervix, so off the the OR we went and my 4 lb 5 oz 16 in baby girl was born. I did get one betamethazone shot, but it was only 1 hour before she was born, so she did not get any benifits from the steroids. Amazingly, she wasnot intubated and never on CPAP. She went to high flow nasal canulla but was off that by 24 hours old. She did really well other than losing a lot of weight (down to 3 lb 8 oz) and when she was just 10 days old I took her home. She was only 3 lbs 14 ozs, on no meds and no monitors. We continued with the 24 cal breastmilk until she was 1 month old when her ped gave us the OK to breastfeed. It took some time, but we were sucessfull and she breastfed for 2 years and 7 months; she never had a drop of formula in her life!

So, she was doing well, then got RSV at 10 weeks old. She was able to recover at home with nebulized bronchiodlators and steroids. She did really good until she reached 11 months when she came down with pneumonia. After that it was a downhill run, she had croup, RSV, peumonia, and bronchiolitis over and over again. At 24 months she was diagnosed with asthma and started on preventative meds. Ever since then it has been a constant struggle to keep her lungs healthy.

She has always been very very small, 16 lbs at a year, 20 lbs at 2 years, 24 lbs at 3 years and 28 lbs at 4 years. At 3 years old she had a sweat test to check for cystic fibrosis. Her number came back at a 45 which freaked me out, but the doctor assured us it was negative.

So, on to today. She is supposed to have some work done on her teeth (yes, she has enamel hypoplasia... AKA preemie teeth!) but when we went in for her pre-op physical, she had a slight cold and the doctor said with her lungs as bad as they are they could not go ahead with the surgery. So now we wait another 2 months! On top of that she is still battling FTT and weighed in at 28.9 pounds at 4 years 7 months old. He gave us aprescription for PediaSure and she has to have 2 cans a day.

Im really worried about her going under anestesia and on a ventilator. I am worried that the vent can further damage her lungs. Does anyone know anything about this that may put my mind at ease? Has anyone had sucess with PediaSure? She was on it from 2 years to 3 1/2 years and it didnt help. Does anyone know if insurance will help cover the cost of the PediaSure since its prescribed?

I would love to hear from anyone out there dealing with these issues. She has a website where I keep a journal of her issues, if you would like to see it here is the link...

http://www.totsites.com/tot/nylamarie

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#2 of 2 Old 10-01-2009, 02:19 PM
 
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It sounds like you are going through a lot. I hope you are able to find the best ways to help your daughter.

I have not heard of insurance covering pediasure, however I'm pretty sure you can buy it at Costco and it is quite a bit cheaper.

We had 2 preemies who are little, even when we adjust. They eat well and both my husband and I are small boned and thin, so we try not to worry about it.

An alternative to ensure would be to make higher calorie smoothies or something like a breakfast cookie or even carnation instant breakfast mixed with whole milk. The point is something that has a lot of calories and nutrition that is easy to get down. I don't have a lot of experience with this with my kids, but when I was recovering from anorexia years ago, I had to drink a lot of ensure...and eventually we found alternatives I liked better. Cheese, dried fruit, vegetable oils, nuts or nut butters, avocados, coconut and similar foods are healthy and full of calories. Wild salmon, free range organic beef, etc are also full of healthy fat and protein.
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