I always have a lot to say and never get to put it into writing. There are many things I wish I had put in writing during the NICU stay. I sometimes don't put it into writing because I know some people don't want to hear anything bad and they just want sunshine and roses. Well instead of thinking about what I would put on the blog in my mind I plan to try to put it here in writing. For those of you that like sunshine and roses don't read a post that is headed with digest. I hope one day to look back at these post and think it all fells like a bad dream.
When someone will ask Lee how the twins are doing he tells a fib and says good. Liar, liar pants on fire. He says he does this because when they ask they really don't want to know but instead just want you to say they are doing good. WWWEEELLL, I refuse to lie and say this. If you don't want to know then don't ask. According to what kind of day I am having when you ask me, I may say ok or you might just catch me on the bad day where I tell you all about our problems. Again don't ask if you don't want to know.
#1 Don't Say Tip
When I say that Bailey doesn't eat nor does she like food at all, please do not tell me you wish you had that problem. I will look at you and say"really you want to never like food in your life, you want to struggle to eat enough everyday just to survive. Really!" Maybe we have misled people by not correctly wording what we say about her feeding problems. Bailey has a severe feeding disorder. There it is. I said it. Bailey should have been sent home from the NICU with a feeding tube. Instead she was sent home with us and their label for her was a "messy eater." Until I thought about using the haberman bottle there were days when I was syringe feeding her. Thank you God for the haberman bottle. With it I am able to squeeze the milk into her mouth and force her to drink her milk.
We have been to 3 different occupational therapist. We started with the last OT in January and we are no better now than we were in January. We sure are out a lot of money though. She is allowed only 30 visits/yr combined OT, PT, and ST. We are out of visits for the year so now it is all on us... all $440 a month. Insurance only reimbursed us 50% because she is out of network. I can thank EI for recommending an OT that is out of network. What happened to EI providing services for children that qualify for it? I will save that for another digest. Our OT told us last week that Bailey is not responding to traditional therapy, and she is wasting our money working on feeding. She will work on her sensory issues.
Where to go from here? We are looking at intensive feeding programs throughout the USA. We are also looking at a lady in CT that would see her for a few days and write a program for them to use for her in Alabama. We are again at that point where people are mentioning a feeding tube. I will first try a resource outside of Alabama before I allow this to happen. If I have not exhausted all resources before we go down that path then I feel that I have failed Bailey.
Typical Feeding for Bailey in a day
5AM Keep her asleep and feed her 4 oz boost hoping she will drink it
7AM try to get her to take 2 oz of boost
9AM 6 oz of yogurt or baby food
11AM keep asleep and feed 4 oz boost
4PM 4.5 oz of boost
6PM keep asleep and feed 4 oz boost
Her last bottle of the day we have started splitting up into 3 attempts so we can get her to take the entire 4.5 oz. We attempt at 8:30, 9:30, and 11:00.
Would you like to come over and stay a few days? Lee and I don't have to worry about anyone coming and overstaying their welcome. They would never last long.
4 comments:
Your daddy says he would give anything in the world if we lived closer to ya'll!!! He talks about ya'll in the mornings when he gets up, lunch when he comes in, and at night when we are in the bed!! He says he will be glad when next Thursday comes so he can stay with Bailey and Wyatt so ya'll can get away for a little while. We love all of ya'll so MUCH!!! Love my BABIES!!!!
I have a small idea of what you are going through since Ian also has issues, and I've gotten the same comment from folks who are a little overweight saying they wish they had his problem. I agree with you. This problem is not one ANYONE should wish for. It's a problem to not ever want to eat anything. The part that is easier for me than you is that Ian has always taken any "milk" or formula by bottle/sippy cup. At least we don't fight over that. Of course he can't live on milk alone the rest of his life. The Hershey team does have an intensive program - http://www.pennstatehershey.org/web/feedingprogram/patientcare/services/intensive. I think very highly of Dr. Williams (psychologist) and you might even want to email him or call him and ask if he has a recommendation closer to AL. I am amazed she is gaining any weight on that feeding schedule. Ian's metabolism must be higher because he'd be losing weight at a rapid pace if he ate/drank what Bailey did. Oh and on another note, I did order that nightlight for Ian. Hoping maybe it will help. I figure it's worth a shot!
Dr. Williams (the head of the feeding team in Hershey) was a professor at Kennedy Krieger Institute’s Pediatric Feeding Disorders Program prior to going to Hershey. So he would be familiar with that program as well. Keith's email is feedingprogram@hmc.psu.edu. He's been great at quickly returning my emails and phone calls. I hope he has some helpful advice for you! Feel free to mention my name as the one who recommended you contact him.
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