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BusyMom4 November 12th, 2010 01:10 PM

newbie
 
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.

Cheep Sk8 November 12th, 2010 02:09 PM

Re: newbie
 
:welcome: Thanks for sharing your story. I think a lot people on here deal with multiple complications including feeding. My DD was a preemie too. Although she was a 35 weeker, she was only 4 lbs 4oz. She was in the NICU for 17 days until she learned how to take a bottle. I could never get her to breastfeed. Kiersten has an oral aversion too and really doesn't seem to understand what "hungry" is.

i3ai3ydanny November 20th, 2010 11:55 AM

Re: newbie
 
Danny was tested for Cystic Fibrosis, Celiac's Disease, and Immune System Deficiencies multiple times. He had several sweat tests done, 12 endoscopies, one colonoscopy and dozens of blood tests done. When he was 9 months old the longest he had gone without having an illness with a fever over 102 was 9 days. When he was 11 months old he finally went 11 days without one and after that he finally got longer and longer gaps between illnesses. Now he can normally go about a month without getting sick. He gets croup several times a year and is normally on breathing treatments at least 6-8 months out of the year. He has not officially been diagnosed with asthma because they already have him on Singulair for Reactive Airway Disease. He got croup the first time when he was 2 months old and then got the flu when he was 6 months old so he was on treatments every 3 hours for about 8 months and several rounds of steroids. He was finally diagnosed with a digestive enzyme deficiency which caused almost all of the problems, including the FTT and several of his food intolerances. He is doing better in every department but lung/breathing. The Asthma/Allergist's office knows him by first and last name, birth date, and know his favorite animals. They even notice when I get my hair cut. We are there WAY too much.


So basically, yep, I know how you feel. :P

BusyMom4 November 21st, 2010 10:18 AM

Re: newbie
 
Quote:

Originally Posted by i3ai3ydanny (Post 22205518)
Danny was tested for Cystic Fibrosis, Celiac's Disease, and Immune System Deficiencies multiple times. He had several sweat tests done, 12 endoscopies, one colonoscopy and dozens of blood tests done. When he was 9 months old the longest he had gone without having an illness with a fever over 102 was 9 days. When he was 11 months old he finally went 11 days without one and after that he finally got longer and longer gaps between illnesses. Now he can normally go about a month without getting sick. He gets croup several times a year and is normally on breathing treatments at least 6-8 months out of the year. He has not officially been diagnosed with asthma because they already have him on Singulair for Reactive Airway Disease. He got croup the first time when he was 2 months old and then got the flu when he was 6 months old so he was on treatments every 3 hours for about 8 months and several rounds of steroids. He was finally diagnosed with a digestive enzyme deficiency which caused almost all of the problems, including the FTT and several of his food intolerances. He is doing better in every department but lung/breathing. The Asthma/Allergist's office knows him by first and last name, birth date, and know his favorite animals. They even notice when I get my hair cut. We are there WAY too much.


So basically, yep, I know how you feel. :P

hello. its nice to hear stories similar to ours. we never went into gi testing because nyla doesnt have gi symptoms other than refluxing which causes aspirating which in turn causes more damage to her already fragile lungs. fevers have never been an issue for her, mostly because her immune system doesnt react properly and a fever is an immune response or so we are told. we also use singulair daily with flovent for prevention. when that is not enough we double the dose of flovent, and when that fails we add a 5 day course of prednisone and when that also fails, its off to the hospital. gotta love that. we have been able to switch from the neb to the chamber which is so much easier and faster to use, but still keep the neb around. after she has been to the hospital we generally switch back to the neb, but with the chamber we can deliver more medication. we can use 4 puffs of ventolin every 15 minutes 4 times in a row, and if that doesnt work its off to the er. that is what the pulmonologist told us to do; and you simply cant do that with the neb. she has been tested for allergies, and it was negative, but they did a blood test and said even though it was negative she could still have 'clinical' allergies. i honestly have no clue what that means since i have never had to deal with allergies before, but they did try her on zyrtec and it made no difference. using prevacid to control the aspirating has helped greatly though.

how is winter time for your lo? its terrible for us. im glad to hear your lo is showing improvements. it has been such a long uphill battle for us. i feel your pain; its so hard to see your lo suffer and have to give them so many medications. sometimes life just isnt fair i guess. nylas younger brother was born earlier and smaller than her and he doesnt have near the problems she has. while i am very greatful for this, i really dont understand.

i3ai3ydanny November 21st, 2010 02:31 PM

Re: newbie
 
Winter is terrible for us. Normally October starts the several months of breathing treatments but we didn't really get mild weather until the beginning of this month so he started them a few weeks ago. We upped them when he got sick.


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