Topic: newbie
View Single Post
November 12th, 2010, 02:10 PM
BusyMom4's Avatar
BusyMom4 BusyMom4 is offline
Join Date: Oct 2010
Posts: 217
hello mommies. i have been reading this board and thought i would introduce my daughter who has been ftt since she was about 15 months old. nyla was born february 22nd 2005 by emergency c section after my water broke without warning. she was exactly 7 weeks premature. she was a prefect for gestational age 4 lbs 5 ozs and 16 inches long. she had an uneventful 10 day stay in the nicu and came home weighing just 3 lbs 14 ozs and was 16 1/2 inches long; free from monitors and medications. we were so lucky, but had no idea what her future would hold. we mistakenly thought prematurity ended when the nicu stay was over. boy were we wrong.

nyla thrived at home. she was breastfeeding well and gaining weight like a champ. by her due date she was a robust 6 lbs 4 ozs and 18 inches long and still thriving. everything was perfect. when she was 11 weeks old she came down with deadly rsv virus, but once again she amazed us by recovering at home with nebulizer treatments and steroids. little did we know at the time, that bout of rsv would damage her already fragile lungs for life. nyla recovered well, but we were told that she probably had asthma. they would not diagnose it until she was 2 as she would likely outgrow it before then so i was not worried. she continued to grow, she was 12 lbs 5 ozs at 6 months and 16 lbs 6 ozs at 11 months when she came down with pneumonia which needed aggressive treatment to get her lungs healed. after that she started to slide downhill quickly. she had repeated lung infections; each requiring very aggressive treatments and she fell further and further down her growth curve. at 15 months she was 17 lbs 9 ozs, and was diagnosed with gerd and started on treatment for that. she also had an oral aversion that made feeding her very difficult. at 18 months she was just 18 pounds, and at 2 years she was 20 pounds and 30 inches tall. no one could tell us why our seemingly healthy preemie had become almost constantly ill with lung infections and was barley growing.

at 23 months old she finally got her official diagnosis of asthma after countless bouts of rsv, bronchiolitis, bronchitis, pneumonia, croup, and so on. she was started on a prevention plan which helped protect her lungs quite a bit. she reached 24 pounds at 3 years old so her doctor decided to test her for cystic fibrosis. it came back borderline; a 45 when it should have been below 40 to have definitively ruled out cf but they called it a negative anyway.

nyla is now nearly 6 years old and 33.8 pounds. i must say that i am pleased with her recent growth given that she was 30.3 pounds when she turned 5. she has chronic sinus disease and struggles with repeated sinus infections. she had surgery to correct the problem in july, as well as to remove her tonsils and adenoids. the surgery seems to have helped but not much. she is also immuno compromised which creates its own list of problems lol.

anyway, she is on a high calorie diet as well as pediasure daily. one issue is that she does not feel hunger the way she should because of her immature nervous system due to her preterm birth.... or so i am told by the nutritionist at her pulmonologists office. it makes sense, she never tells me she is hungry. i just have to tell her its time to eat, and even at that it is hard to get her to. she burns extra calories trying to keep her lungs healthy but doesnt take in extra calories, so its a frustrating battle. an average oxygen sat for her is 93 percent; where as someone with normal lung function is more like 98-99 percent, so her lungs are constantly working harder and need more 'fuel.' there simply are not enough calories left for good growth; or so this is how it has been explained to me.

it breaks my heart that she takes so many meds each day. she is so young, i just hate it; and to see her struggle to breathe, struggle to grow, have constant infections and have to miss school. so many doctor appointments and hospital visits. i know she hates it and so do i.

anyway, sorry that is so long. anyone dealing with any of these other issues along with ftt/

sorry there are no caps, my shift key doesnt work. need a new keyboard.

Big thanks to KimberlyD0 for my amazing siggy
Reply With Quote