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11 May 2009 @ 02:41 pm
I hope you don't mind me posting here but I can't find anywhere else to post about babies feeding problems and as you will read this community may be relevant.

My daughter is 7 months old and has been constantly sick since she was born (projectile vomiting). For the first 6 months wind seemed to be the issue but since she's been crawling and sitting on her own she seems to be bringing this up. However its given way to feeding issues in general. There is a whole host of issues but I think two are probably most key. First of all when she feeds on milk she comes up gasping for air (as if she's not taking it in through her nose as she sucks) and secondly she really struggles to swallow food. She will chew it and open her mouth for more but it gets stuck at the back of her throat and usually about 2-3 spoonfuls in she vomits. We also have problems with unusual tastes like medicine, toothpaste and even this weekend it was chocolate (which the dietican had suggested to try - we gave her it melted down). My daughter loves finger foods but again she gags and chokes on food and she always vomits. The best we can do is a couple of tiny amounts of very pureed solids (she prefers savoury).

The speech therapist last week tried to see inside my daughter mouth but she can't see her tonsils or the back of her throat and my daughter is being referred for further investigation as the spech therapist thinks she may have a cleft palate.

I have worked with children for many years including one with a hare lip so between my knowledge and the professionals that are involved we have tried everything we can think of, but I was wondering a) if any of this was similar to your experiences and b) if you had any ideas of foods to overcome the gag reflex. As an idea gravy is popular but if you add potato or anything to it then my baby gags. Above all I really just want some support because after 7 months of constant sick, not being able to feed out and about and struggling to give solids, I getting frustrated.

Many Thanks in advance.
17 January 2008 @ 09:26 am
Micah was born with a bilateral cleft lip and palette.  He is 5 1/2 months old now and doing really well.  His lip surgery was on December 5th 2007 and he is healed and looking fantastic!  Sometimes when he cries a lot I've noticed the bruising will come back for a little while, or his upper lip will look discolored.

He will have his palette repair done in June.  I am really glad to have a few months of normality before going through everything again.

General baby things plague me now....................

1.  He's not sleeping through the night.  He did it for like a couple weeks right around Christmas and suddenly stopped.  I'm trying to break this habit - any suggestions?

2.  He is not big on solids...and he was doing okay and then got a cold and hasn't really wanted to cooperate since - help?

Current Location: home
Current Mood: busy
Current Music: sound of "lapping waves" on the baby swing
16 January 2008 @ 05:09 pm
All right, the permanent new layout is done. What do you guys think?
16 January 2008 @ 04:07 pm
I changed the layout/theme of this community, temporarily. I'm working on some new graphics that pertain to cleft palates, and will upload them soon.

Also, I'm wondering whether you all think this community should be friends only or members only post? We haven't had any issues thus far, but I don't know if you are all comfortable talking about your babies in a public forum. Let me know what you think.
Current Mood: chipperchipper
16 January 2008 @ 04:01 pm
Well, this community isn't very active unfortunately. I might try a little promoting to liven things up.

Meanwhile, how are all of our babies?

Miles is doing pretty well. He's 2.5 now. His biggest struggles are learning to talk, and eating still remains an issue. Not sure if either of these things have anything to do with his cleft, but I'm sure the cleft hasn't helped matters either way. He has a low gag threshold, and is very picky about what he eats. Texture is the biggest issue with food. He doesn't like anything stringy (so most meats are out, except processed sandwich meats and chicken nuggets. He also likes fish/tuna fish). I have given up on veggies for a while because the texture makes him gag. They are difficult to chew, and most veggies are pretty stringy. So now he's learned that anything green is a veggie and refuses to eat it. The only way I get veggies in him is to way overcook them and then "hide" them in foods he normally eats.

As far as talking goes, he's gotten better over the last few months, but still struggles with C/K sounds, and still hasn't figured out F or S. Most of his version of words begin with B, D, N or M (and recently, T). He focuses on vowel sounds, so his words often sound like the vowels without the consonants. =P

So, how are all of your babies?
Current Mood: chipperchipper
16 November 2007 @ 03:20 pm
Thanks allykatt and eating_dust , your kids are adorable!  They are both much further along in the journey than my son Micah.  It is comforting see and know they are doing well and things will get better.

Micah is 3 months old and had his first surgery about a month ago to put in an appliance to help with alignment. Did you do something similar?  That was the hardest thing I have ever experienced!  He was in so much pain at first, I was afraid we did something horrible by choosing this option (there was another option, without a surgery).  But I am sure you know about all these things!  It is hard to handle everything sometimes...especially when everyone around me says "it'll be alright" and they have no idea what we're going through!

It has been so hard getting him to eat well again with all the metal and plastic in his mouth.  On top of all the feeding issues he has pretty bad reflux and GI issues we're trying to deal with.  He is on a Lactose Free formula, which has helped some, well, alot compared to how much he was throwing up before he was on it.  As far as recovering form the surgery...His eating is just now starting to get back to normal...and then on Dec. 5th he'll have surgery to repair his lip.  I feel stressed because we had are having such a hard time getting him to eat the amount we're told he needs to grow, and now with another surgery already, I am afraid we'll be right back at the beginning...

Where are you located?  I am in Spokane, Wa.  I have heard that there are rather high statistics for cleft babies in the Inland Northwest (which is where I am).  I am also curious to know about the best doctors and such.  The plastic surgeon we have, we are told, is fantastic and she works with cleft children all the time.  But I know we'll also need alot of orthodontic work eventually...

I try to take on day at a time...but as the bills add up I stress even more.  My husband and I are at the point where we don't qualify for any kind of government or state aid, yet we really don't make enough to cover it all on our own either.  I just wish someone would explain that to the programs!

Sorry to dump all this, my husband and I are new to the area we live so I really don't know many people...and it feels good to talk to people who will understand!  Thanks so much!
Current Mood: stressedstressed
16 November 2007 @ 10:28 am
Hello, I randomly thought of looking up other users with babies born with clefts - and I found this.  But I noticed it isn't used much...is anyone reading this? I could use help and support!
Current Location: home
Current Mood: anxiousanxious
Current Music: the baby swing
21 April 2007 @ 10:11 pm
Addison is eating so much more now since the palate surgery. I think she is going to gain weight a whole lot better than before. She is also being more talkative, although she onyl articulates the consanant M, saying, "MAMAMAMA". But she does that because i really stressed it to her so she would start saying it. I am working on her saying BABY and DADA and even HI.

We see the doctor next week for the follow up appointment. One problem i am kind of having is getting her to learn how to suck out of normal nipples or even sippy cups (w/ valves). She is so used to doing this biting mechanism on her haberman nipples, she thinks that is the only way to get her milk. Any suggestions on what to do...I guess I have to keep trying until she figures it out.
04 April 2007 @ 09:46 am
it's the fifth day after the palate surgery and addison is fighting us everytime we try to feed her. i know she is constipated and i think the pain in her mouth has faded because she doesn't show signs of feeling pain in her mouth. we are cutting down the pain meds as of last night. still no difference. i am waiting for the surgeon to call me back....what can i do? why is she not wanting to eat?
01 April 2007 @ 09:02 am
addison had her sugery...it is now day two of recorvery. it's not as bad as we thought it would be. right now the main problems are throwing up her food when we feed her kind of too much for her tummy to handle. i have been just giving 5 cc's every ten minutes or so. i am starting to increase it. Before she didnt even want to take the food and once she started, we got excited and basically "overfed".

we are using a seringe feeder that seems to be the neatest. they said she can use her haberman but i dont feel comfy giving that to her. she definitely hates to be put down in her crib to sleep so we basically have been holding her constantly, which is really nice except for the fact that my back hurts.

One thing i am not too sure on is when she puked after we first gave her medicine and then milk. I wasn't sure if she puked up her meds or if it absorbs quickly...I am basically just waiting to give her more when she starts showing signs of being in pain. Okay, thats all for now...i'll update when i have more time.