Its all about the "why"...and don't forget where you came from.
This is for all my preemie mommies out there...Many of you know I have been in a battle to keep Anna eating, gaining calories, off a g-tube and to not be FTT for many many months...Some of you are just entering that stage of the "game". At least in a game you have rules, with this feeding nightmare, there are no rules and rarely any answers to "why"? In the past few months Anna has started to eat more foods. They are all dry, crunchy and funny enough, beige in color. I gave up with Early Intervention as Anna was about a year old when I noticed her eating or lack off was getting really bad and I was worried we were never going to get ahead. I felt that the pushing was making matters worse. The battle with tv on or off which would throw Anna into tantrums and making her try things she really had no interest in...it was too much for all of us. What I saw was a little baby who desperatly wanted control of something in her life, and she was going to control all she could...the food she ate.
I learned a lot, she taught me. I kept thinking why would I push foods on her that made her gag and vomit? The drs wanted me to put her in a in-house facility to teach her to eat...It made no sense to me...Finally I met someone who said I was right, and much much more. She explained to me what I had been missing with every specialist I have seen, It was a revelation and I hope it helps some of you...
First of all, she was very impressed that Anna was eating so well. She gobbles down the foods she likes and did so willingly for the OT to watch. She eats chex, cheerios, veggie sticks, goldfish, gerber crunchies, yogurt drops, graham crackers, french fries, breads, crackers, chips, etc...then I held her bottle for her while she drank...ready for the Ot to say something. She did not. She said, I understand why she won't hold it, its ok. It's also Ok that she is 21 months and still drinking a bottle, she needs those nutrients. "sigh" of relief...
Then she said the "revelation"...a fullterm baby comes out and wants to suckle, nurse, immediatly...He is anxious at the "starting line" and ready for the "race". Then there are "our" babies. Please deduct according to your own personal issues...This Is Anna...At the starting line, now Deduct for preemie at 34 weeks, deduct for IUGR, deduct for drugs in her system, deduct for not being able to eat right away, deduct for NG tube feedings, deduct for reflux, deduct for medications due to heart condition, deduct for open heart surgery, deduct for low volume feeder....Understand? She was so far behind the starting line to begin with that she is always trying to catch up.
Now, as the fullterm baby is moving to his next race and starting into baby foods...here we go again. Deduct for gag reflex, deduct for vomiting, over and over, deduct for not gaining weight like she should.Deduct for RSV and hospitalization again.... Everyone catching on? Some of you have babies with repeated ear infections, or who were only a pound to start with, maybe on ng tubes for much longer...or medications, surgeries for shunts, etc...so many factors I never thought about that make a difference in how they eat...
Here is Anna who fought so hard and the drs just want her to catch up...The OT said, she was so far behind to start with she needs help catching up. She prefers crunchy dry food because she knows where it is in her mouth, she can push it out if she doesnt like what it tastes like or feels like. She cannot do that with purees, they are all in her mouth, wet things she has no control over and she gags and vomits to get them out. Its her response, like a survival instinct to her.
The OT told me that EI drives her nuts because they treat all babies who have feeding issues the same, not the why. We need to see Anna's why...and then be so proud of her because she said it is huge that she is eating as well as she is after all she has gone through. She also told me that feeding will not affect her brain, cognitive abilities. And will not affect her speech, which we are struggling with right now. She said it might affect her stature, my little shorty :(
She also said I should start with speech therapy, but to not let them try feeding her. She said we will start a program at home and go sooo slowly to not upset her. She wants Anna to be in control and to let us know if she doesnt want something. I really think this is a good idea...and I hope something I have learned might help some moms out there too.
I know sometimes I sound like its easy...its been so hard. I have raised 15 foster babies from birth until 1-7mo old and 2 other children...babies were "my thing"...I never knew a baby who didn't want or couldn't eat for any reason...and would vomit at just the sight of food...This feeding battle has been the hardest thing I have ever had to figure out and I am still in a daily battle...but now I finally feel like I am winning the war on food. It must be hard to be so scared to eat...I can only imagine and try to help her to trust the food around her. It's sounds silly when you say it out loud...but I know you preemie moms get it :) Hang in there. Hugs!!
I learned a lot, she taught me. I kept thinking why would I push foods on her that made her gag and vomit? The drs wanted me to put her in a in-house facility to teach her to eat...It made no sense to me...Finally I met someone who said I was right, and much much more. She explained to me what I had been missing with every specialist I have seen, It was a revelation and I hope it helps some of you...
First of all, she was very impressed that Anna was eating so well. She gobbles down the foods she likes and did so willingly for the OT to watch. She eats chex, cheerios, veggie sticks, goldfish, gerber crunchies, yogurt drops, graham crackers, french fries, breads, crackers, chips, etc...then I held her bottle for her while she drank...ready for the Ot to say something. She did not. She said, I understand why she won't hold it, its ok. It's also Ok that she is 21 months and still drinking a bottle, she needs those nutrients. "sigh" of relief...
Then she said the "revelation"...a fullterm baby comes out and wants to suckle, nurse, immediatly...He is anxious at the "starting line" and ready for the "race". Then there are "our" babies. Please deduct according to your own personal issues...This Is Anna...At the starting line, now Deduct for preemie at 34 weeks, deduct for IUGR, deduct for drugs in her system, deduct for not being able to eat right away, deduct for NG tube feedings, deduct for reflux, deduct for medications due to heart condition, deduct for open heart surgery, deduct for low volume feeder....Understand? She was so far behind the starting line to begin with that she is always trying to catch up.
Now, as the fullterm baby is moving to his next race and starting into baby foods...here we go again. Deduct for gag reflex, deduct for vomiting, over and over, deduct for not gaining weight like she should.Deduct for RSV and hospitalization again.... Everyone catching on? Some of you have babies with repeated ear infections, or who were only a pound to start with, maybe on ng tubes for much longer...or medications, surgeries for shunts, etc...so many factors I never thought about that make a difference in how they eat...
Here is Anna who fought so hard and the drs just want her to catch up...The OT said, she was so far behind to start with she needs help catching up. She prefers crunchy dry food because she knows where it is in her mouth, she can push it out if she doesnt like what it tastes like or feels like. She cannot do that with purees, they are all in her mouth, wet things she has no control over and she gags and vomits to get them out. Its her response, like a survival instinct to her.
The OT told me that EI drives her nuts because they treat all babies who have feeding issues the same, not the why. We need to see Anna's why...and then be so proud of her because she said it is huge that she is eating as well as she is after all she has gone through. She also told me that feeding will not affect her brain, cognitive abilities. And will not affect her speech, which we are struggling with right now. She said it might affect her stature, my little shorty :(
She also said I should start with speech therapy, but to not let them try feeding her. She said we will start a program at home and go sooo slowly to not upset her. She wants Anna to be in control and to let us know if she doesnt want something. I really think this is a good idea...and I hope something I have learned might help some moms out there too.
I know sometimes I sound like its easy...its been so hard. I have raised 15 foster babies from birth until 1-7mo old and 2 other children...babies were "my thing"...I never knew a baby who didn't want or couldn't eat for any reason...and would vomit at just the sight of food...This feeding battle has been the hardest thing I have ever had to figure out and I am still in a daily battle...but now I finally feel like I am winning the war on food. It must be hard to be so scared to eat...I can only imagine and try to help her to trust the food around her. It's sounds silly when you say it out loud...but I know you preemie moms get it :) Hang in there. Hugs!!
