I have never before "thought" about the amount I was feeding my baby. I just nursed them every three hours and called it good.
With Macy it is different. The nurses have me all worried that she isn't going to grow once she comes home. That she wont be getting enough to eat etc...
I would like to try and stay away from using her NG tube (obviously I'll use it if I have to) and mostly bottle feed her, then eventually breast feed her, but they tell me that if I don't use her NG tube, she wont end up getting enough. Though I am able to feed her pretty well by bottle...
Any feeding problems with other DS kids??? What did you do? Oh, and Macy has a really high Palate - so that creats some problems...
Wednesday, March 3, 2010
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8 comments:
The high palate is common with Ds. Morgan's is super high too. I felt like I spent Morgan's first year consumed with her growth and weight gain. We had to go to her pedi's office every other day (a 30 minute drive) to have her weighed) and adjust how much formula I was adding to my breast milk to give her extra calories. I wish I had some good advice for you but the only thing I have is our babies generally grow smaller and will be slower with weight gain than typical babies. Morgan always looked much younger than she was and still does. If there is anyway you can try to not make it consume you. Easier said than done. If she is tolerating a bottle than personally I would build her feeds up with the bottle and not do the ng feeds. And then hopefully you can get her to transition to nursing.
I did not have any feeding issues with my Macy. I remember being told a few times in the hospital after she was born that it would be difficult to breast feed her. Not so! She did great and nursed for 11 months. They also told us that she would have a hard time gaining weight because of her heart defect (had heart surgery at 5 months), well, "they" were wrong again and she grew just fine. I really hope that the feeding issues go well for you and Macy. I know that some people have had difficulties but that does not necessarily mean that you will. Try not to get discouraged by what the medical people say. They do not know your girl as well as you do and you will find a way that works for you both. If issues come up, you will deal! I can't wait to read about Macy coming home!
no advice but I just have to say that I am sooo excited for Macy to come home!!!
I would have to agree with Heather all the way. Justin is almost two and only weighs 19 lbs. My girls were that weight before they turned one! Try not to let it consume you. As long as she's eating and slowly gaining weight... she'll be just fine! You're doing great!
My son has a high and narrow palate, too. He had a hard time with the bottle, but after a couple weeks of bottle and breast, he got it down and was solely breastfed until he was 11 months old (and starting biting me like crazy!) You can find a lactation consultant to help weigh Macy before and after feedings to see if she's getting enough. Those nurses shouldn't be so negative -- rather encourage breastfeeding. Since you're experienced at nursing your other kids, you know that it's a supply and demand operation. Pump to keep up your supply during this transition and hopefully she'll learn to latch well and breastfeed well. I don't have to tell you how great it is, especially for nice round tummies. Good luck!
Kaitlyn needed a NG tube some at birth but came home on a bottle. After nursing our boys I was determined to nurse Kaitlyn. It didn't go well, her tongue still pushes out instead of pulling in, latching on was to difficult for her, I pumped as long as I could. With her AVSD heart defect, knowing that her feeds would become more difficult as her heart grew weaker I decided nursing wasn't a big deal and was thrilled she took a bottle and didn't need the ng tube. After heart surgery her feeding became great. Like someone else said, you know her best. And remember kiddos with Ds are smaller. They have their own growth chart. Kaitlyn right now is only 7% on the typical baby growth chart and 50% on the Ds chart (I had to show our doctor the Ds chart, she didn't know about it, ugh!). As long as she gains on her own curve I wouldn't worry. If her belly can tolerate it you can always add calories to her bottles to help not needing the tube?! Just an idea. We had to do this after Katie's surgery. Hang in there!
The high, narrow palate it pretty common. During the first year of life, you can do palate stretches. Basically you take your pointer finger and place it at the mid point of her palate. Rub your finger out to the right and then the left, sort of with pressure as if in a way stretching it out. We did this with our daughter ... it is something that is recommended by the folks at Talk Tools. But it has to be done during the first year before the palate fuses and try to remember to do it daily. I know it is hard. Hope the little peanut is progressing!
Beth has a high palate. Very common in kids with DS. Beth had a difficult time breast feeding so after a couple weeks, I went to the bottle. She did well with it but was also was slow to gain weight. At 7 months old, she weighed in at only 11 pounds! She was eating regularly though so my doctor wasn't too concerned. Now at 25, she could stand to loose a few pounds!
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