New to this board

Mama2Lyns · #1 May 27th, 2009, 12:24 AM

Hi! I am not new to JM, but I am new to this board. My sweet little Addy was diagnosed with FTT today at her 4mth appt. She is only 9lbs, 3ozs

A little background - she was born with pierre robin syndrome (recessed jaw) which caused a cleft palate. Her jaw was corrected with surgery at 6 days old. Her cleft is scheduled to be fixed on July 20th, but it looks like it will have to be postponed due to her FTT issues. She also has severe exzema which we now have found out has to do with a milk allergy.

We have to see a nutritionist and a GI again...but for now we are doing 24cal formula w/ bananas mix.

Anyone else been in my shoes and have suggestions or any advice?

**Edited to add - she spent 3 weeks in the NICU and came home on an NG tube. I am really hoping we can avoid doing the tube again....

carajean9999 · #2 May 28th, 2009, 08:41 PM

My name is cara and i have an addy of my own with problems gaining weight. She is only 8 weeks and has a chromosome 2 deletion accompanied with possibly seizures, mr, growth delay, and a number of other issues. She is an extremely lazy eater but is able to suck for a short while. We were in the nicu and by a hair didnt have to get an ng tube. Tube feedings are in the back of my head already as i get her weighed every week or 2 and her weight barely moves. Her birth weight was 5 pounds 9 ounces and a week later when we left the nicu was 5 pounds 3 ounces. 7 weeks later we are up to 6 pounds 1 and a half ounces. Our addy's need to grow.

i3ai3ydanny · #3 May 29th, 2009, 10:28 AM

The nutrionist will probably have a better idea of how to handle that in infants. I know that normally they will increase the calories in the formula by mixing it differently but that is about all I know. They know the specific measurements etc. I hope both your Addy's grow soon!!!

*tacii · #4 May 29th, 2009, 10:59 AM

Welcome to both of you! Hope you're both able to find solutions to your Addy's weight gain.

Mama2Lyns · #5 June 1st, 2009, 08:58 PM

Well she gained 7oz in 3 days! She is doing so so much better on the Alimentum and bananas....wish us luck that we keep growing! As long as she gains 1oz a day we can stay out of the hospital....

carajean9999 · #6 June 1st, 2009, 10:07 PM

thats great im glad shes doin so much better. keepin her in my thoughts.

lovemyboysandabbey2 · #7 June 2nd, 2009, 11:39 AM

welcome!! I am so glad to hear she is gaining weight!! My Abbey was diagnosed when she was 5 mos old, she is 11mos old and weighs 13lbs, she spent a week in the hospital in Dec with a feeding tube.