Robynne, How are you? Hopefully great! Well I posted not too long ago about my baby refusing her bottle and you gave me some great advice.
So she actually lets me put the bottle in her mouth sometimes, but will not suck for anything in the world! She has always had a hypersensitive gag reflex. It has moved back quite a bit which is great!! Before we couldnt even put it in her mouth ever without her gaging on it! She always gags with meds and baby food though! Thank God for the NG or else she wouldnt get any meds!! Well she has never been interested in the bottle. We have always had to push her or insist to get her to take it and when she did she would only take about an ounce or two. She was a preemie and was in the hospital, so this all started there. They diagnosed reflux early on because of all the vomiting, did tests and put her on reglan and zantac. Well at first in the hospital we thought that she wasnt eating because she had thrush, it was treated and went away and still she wouldnt eat, it came back and was treated again and she had it for a long time like a month, they tried two different meds and it was just persistant! Finally it went away for good. Well she still wouldnt take the bottle. Sometimes she did with a lot of work and taking like an hour or more to get an ounce in her! So she's been home on the NG since then. She is now 7 months old and is scheduled to have a G-tube placement on the 22nd. We are scared, nervous, anxious, but I guess happy to get the NG out! It has caused her aversion to get worse and we know this because she used to take the bottle very well when she was sleepy, wide awake but just really tired and sleepy. Well that was the only time she actually wanted the bottle and took it without us pushing her! Now she will not take it at all she screams and screams until we take it away! Ok back to what I was going to ask you about.... she now sometimes lets me put it in her mouth if I distract her, but will not suck at all! She just plays with the nipple with her tongue and bites it. I remember when she was little and weak because she was a preemie we would rub the nipple on her palate to get her to suck and she would, well I try that and it dont work! Even when she is asleep she wont suck, I dont get it! She used to suck, and her suck was great! Do you think she forgot how to suck? Or just doesnt want to? It seems as if she is scared to suck. Or scared of the bottle! Sometimes I feel as if she wants to suck, but stops herself. It is so frustrating and hard!! I dont want her to never take her bottle!! It has been about 4-5 weeks now that she is only NG tube fed. Before she would at least take a little and I would tube the rest or sometimes she would even take a whole bottle while sleepy/asleep, now nothing!! I'm just wondering what I can do to get her to suck, I just got new bottles, that didnt help, and tried a sippy cup which was worse! I dont know if I told you before but we are supposed to be getting speech therapy or ocupational therapy, not sure which, from early interventions, but they said there is a waiting list!!! I dont know how long or when it will start, it's already been about a month and a half since our eval. with them. I am desperate for help. I know it should be reasurring that she is at least getting the nutrition from the tube, but it's not the same!! I want her to take her bottle and I dont know how to get her to :sad5: Please help! Thank you from the bottom of my heart -Vanessa
P.S. She has also never liked the pacifier, just like tht bottle, and when I try to give it to her, she does the same thing just plays and bites it. She loves her fist in her mouth, thats about it though!

Oh Vanessa:

NOW is the critical time that Cassie needs therapy :( She has not lost her ability to suck; she just doesn't want to because she is smart. An NG tube makes a swallow very uncoordinated and awkward. Her swallowing skills may have weakened because she has not used those muscles very much. When I am converting a baby during this critical time, the ONLY way I have had success is with a thickened feeding. I believe I mentioned this before. It slows down the bolus or liquid and makes it easier for the baby to handle. She is already aversive; do NOT try and stick the nipple in her palate. In fact, softly place the nipple on the tip of her lips and let her bring it into her mouth on her terms.

Since she is chewing and biting, which is common with my transition babies, I would get a small base Dr. Brown's Y cut nipple. I would try 1 packet of nectar Simply Thick to 4 oz. of your Neosure and shake vigorously for 30 seconds. If she bites the nipple, she should get some formula in her mouth because it is a cereal nipple (she won't even have to suck initially). Take it slow and use the infant videos as a distraction while gently swaddling her. Remember, don't force the nipple up into her palate. Gently place the tip on her lips and let her accept it in. If she gags, remove it and then replace back on her lips and start over. This must be on Cassie's terms. You still have a small window of time if she is accepting the nipple in her mouth. Don't give up on oral feeds yet, but hold your surgery date.

If you cannot get your hands on Simply Thick, which is usually in compounding pharmacies, you can use baby rice cereal. Go buy some at the store and run it through a coffee grinder when it is dry and flaky so that it comes out looking smooth like flour. Place it in an airtight container and use a measuring teaspoon for feedings. Use 1 1/2 tsp. ground rice cereal per oz. of Neosure to get a "nectar" consistency.Write back with questions. Hang in there!!!!!!

Robynne

Robynne :sad5: She just wont suck for anything in the world!! I dont think she ever will!