This is another rare moment when Gracie didn't cry while Callie was holding her. My poor Callie, all she wants is a fun little baby sister. She wants to hold her, take care of her and play with her but Gracie usually wants none of it! Callie loves her so much. We sit together and put Gracie on our laps and read books to her (thanks to those who gave her gifts of books, we use them!) Gracie loves being read to.Other Gracie news: that little stinker still will not take a bottle!! She starts to fuss the minute I try to put it in her mouth. She will let a little bit of it drip into her mouth and then she reluctantly swallows it, sometimes gagging and coughing it down (or up!). I have had Kids on the Move come out and give me a few tips. I have been trying them but nothing seems to be working. To all of you heart moms out there, do you have any advice? I am thinking now that she may never take a bottle and will be doomed for g-tube surgery in the future. They have told me to give her as much positive stimulation to her face and mouth as possible. I have done this and Gracie herself chews on her fingers all day and it has not made a difference in her wanting to take a bottle. It is pretty frustrating. On a lighter note, I got the first official LAUGH out of her today!!! She kind of gave me one the other day when I was playing with her, but today it was real. I loved it. I hope to get more and more out of her. She is doing better with throwing up. She only throws up once or twice a day now. I have increased her milk to 50 ml every other hour during the day, she has done well with that today so we'll see if she continues. She still sleeps a fair amount (which her cardiologist said is normal) and is fussy when we mess with her, but other than that, she is doing well.
15 comments:
I feel your frustration with the feeding!! As you'vr read... we are going through the same things. We have Physical, Occupational and Speech therapy working with him and he still is reluctant. They always tell me "don't force him" which is understandable, but if we keep going at his pace he'll never eat!! So.. we just keep trying differnet tastes, texures and stimulation on the tonue and mouth. If she doesn't have teeth yet, you can get one of those finger toothbrush things and work with desensitizing her tongue. Wish we did this with Owen before he got those chompers cause now he trys to bite off our fingers. ANYTHING you can get her to put in her mouth to keep her familiar with textures is supposed to be helpful. We're working on baby food now... so far no luck.
We have basically been told to give up on the bottle and we'll start to work with sippy cups, open mouth cups and cups with straws. If Owen gets even a drizzle of formula in his mouth it's almost like it shocks him and he coughs or gags as a defense... just like Gracie did.
I'm at a loss as well. We are continually told to give him more time before proceeding with the Gtube... eventually they pick up on it. I hate the idea of another surgery so I guess I'm just REALLY hopeful.
I know this isn't that helpful, but I just want you to know that you are definetly NOT alone!!
Andrea
Well, hooray for letting Callie hold her and laughing for Mama! Good luck with bottle feedings.
Gracie is just reminding you that life just isn't that easy. Darn it! Well at least she is pretty!--inside joke.
I'm so happy for Callie that Gracie didn't cry this time.
My Andrew would only take water in a bottle and we had to switch him to whole milk when he was only 10 months to avoid G tube surgery. He just really hated the taste of formula. He also preferred a sippy cup to bottles. Maybe you could try a sippy.
Andrea Mathis
(IHH)
I am sure it is frustrating. Hang in there, persistence usually pays off! Glad Callie got a moment with her sis and that mommy got a laugh! So fun!
what sweet girls, even if it did only last a minute or two. Sorry about her not taking bottles, that has got to be frustrating. I hope that things get better with the bottles soon:)
The Achieve Center in Wenatchee, WA (pediatric therapy) might be able to help with the G-tube (is that right?) situation.
We almost had a foster baby with a feeding tube, and they explained how some babies can be "trained" to not need the tube within a short time, I think. That was earlier this year, but I think they could help you.
I am sure you have tried this one, but in case you haven't you might want to try different bottles. Roman would only take the ones from the NICU until he was one. Finally, the nipples wore out because they are really soft rubber. I even begged and called the NICU for new ones, but by then they had changed brands. He got used to another type out of hunger I think. I understand though because we are still having issues getting him to eat more than a few bites of anything. Hang in there!
I have followed your blogg since Gracie was born. and what a miracle she is.
I too had to struggle with a child going through the norwood and not eating and have an ng-tube.
My son did not really eat by mouth until he ws 6 months old, and even then it was minimal ( 10 mls a day.) The relfux was horrid. They even planned for a g-tube after the glenn.
But after his second surgery ... WOW!!! a different baby. He was happy, he wanted to eat, the reflux was gone!!! and never had to have the ng-tube again.
Be patient, I now it is frustrating and heartbreaking at the same time. My son ate most by ng-tube then after the glenn.( and in only a coupe of days ) the tube was out.. and has never been back in, although some days I am on him to eat more....
Hopefully Gracie will begin to eat also near or after her next surgery.
My son has a web page if you are interested feel free to visit..
http://blogswithheart.com/lionheart/
(although the web page has become a family web page now!!)
take care,
Drea
I enjoy your blog, Seth (born 3/27/08) has HLHS also. We have a G-tube but he takes up to 60 ccs by mouth, up to 3-4x/day (usually it's 45ccs 2x/day though). We use thickened formula and a variety of tricks.. Hang in there!
Our therapist recommended a NUK nipple, or trying different ones, increasing flow with a slit in the nipple, going from a paci to the bottle, sliding from the side of the mouth, baby being on the side...i am sure you have heard all this. Anyway, after prayer and consideration, we decided to take out the NG and see how it went. We felt it might be easier to eat without a tube in you. Tyler didn't meet his goal for a couple of days, but got it in about 1 week. Our doctor said we could try it but to make sure he was getting close to the goal within a few days. Of course, use your judgment on that one and talk to a doctor. Good luck.
I wish I had some miraculous advice for you. It sounds like (from reading above) that you have a lot of support from other moms out there going through the same thing. Good Luck
Here's what worked for us, once Abby got to the point where she would put the bottle in her mouth:
-Feeding her while she is sleeping. We would get her up and rock her while she slept and slip the bottle in her mouth. As a reflex she would suck down more formula than she ever did awake!
-Visual stimulation to distract her from feeding (ie: television/Baby Einstein)
-One of us would sit next to her in the car and she would eat much better (and still does eat better in the car than anywhere else)
Not being able to get my baby to eat was so emotionally draining for me. It was like so many things about Abby and her heart were totally out of my control that I latched on to feeding as being the one thing I *could* control.
Good luck!
You need Annie Miller - she's a NICU OT miracle worker. At least, she's a great strategist when it comes to oral tactile issues. I think Kids on the Move could track her down.
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