Nevaeh's Update

[ajsahm]

Well I am slow to update but a couple of you already heard via facebook. We have been struggling with weight and growth well forever. It does not help she throws-up EVERYDAY! So she is 23 months 17lbs. and 29inches long. So we were referred to a GI to see if she was able to help. I was feeling horrible for Nevaeh. I was doing all I could do and was failing her. Every appointment I went to up to this point was more things I need to do different and more things to try. So we went to Janet Harnsburger in Murray. She was sooooo wonderful! She is a Heart Mom as well. She has a son in college who was born HRHS. I cried when she told me. I just felt releaf talking to a doctor that knew the mom side of things. You want to know what she told me? That i was doing a wonderful job and she is doing great! She does not want her the throw-up and not gain weight but both are normal with heart babies. AND these issues ARE heart related despite what the cardiologist says. She did have plans A,B,C,and D in mind. Ahhhhh it felt so good to have a plan. So plan A is Cyproheptadine. We have been on it for a couple weeks and it is kinda helping. She is not throwing-up as much. Good but not perfect. So we will see if we add plan B next visit. The LES could not be closing all the way and allowing food to come back up. So there is another medicine that she could try. The other part of this is Dr Harnsburger does not want to try to catch her weight up fast. She said we have 6 more years before she starts to loose her growth potential. She took her off the high calorie formula. Yep OFF! I am not sure how this all works but Dr. Harnsburger is positive she can get her on the chart and have her gain at a healthy rate. Putting weight on too fast is not good for her long term growth and hard to maintain. I am so happy to see a dr that understands and has a better plan then feed her more. She is writing a letter to Dr Sue based on his comments in her chart. Yes Dr. Sue feels she may not be given food as often as I say and my be malnurshed. OMG! So Dr harnsburger is not thrilled with the comments in the chart. Neither am I. I am very hurt by it actually. Nevaeh will see the cardiologist in Aug. I will let you know how that goes.

oh by the way baby Gabriel is expected to be her soon. In the next 2 weeks! I am not far enough along really to have him yet. I am 36 Weeks but my body is ready. I am 2cm and 70%. So pray I can last 2 more weeks at least. My Dr. is thinking 2 weeks may not be possible. He is measuring 5lbs 4oz. So I am doing my best to take care of three kids and not have him early. So pray i bake this baby a little longer. :) When he is born I will have him monitored on the pulse Ox for a while. You have to request to have it done but it can detect many heart issues. We have seen his heart and it looks great. So i am not worried. I just need him to be given all the time he needs to grow.

[busyhoneybee]

I'm glad that you had a good meeting with regards to Nevaeh's weight gain. Sound like you have a fabulous Dr. on your side! Good luck with the up coming baby!! I can't wait to meet the little guy. I think doing a pulse O2 screening is very smart!! Good luck with everything!

[Chrissie]

First I hope your baby does stay a baken for a while LOL Let me know if you need any help??? Wouldn't mind!

For sweet Nevaeh, thats awesome you finally got someone who "understands" its so hard to get these little ones to gain at ALL!!! I am glad I read your post, as for today we are going on day 4 where Kylie won't eat at all!!!! AHHHHH That new medication cyproheptadinen (periactin) thats the one I told you about, Kylie has been on/off since March, we have done 5 days on 2 days off 2.5ml 2xday, I haven't noticed a difference lately so I took her off for about 4 weeks now. It has the oppisite effect from benadryl on Kylie, periactin being an anahistamine (spl) is supposed to make her tired or wired, in her wired and makes her super grumpy, yes she eats very well on it most the time but sometimes it's not worth the super hyper baby + grumpy= not happy momma!! LOL Just wanted to FYI you on our experiance, I am probably going to start her back up seeming we are going down on weight AGAIN!!! Oh and your not alone in your feeling like you are "failing" her! I feel like it's SO MY FAULT that Kylie is not gaining despite my hard efforts to offer all types of food all times a day, she doesn't even want her formula anymore, she is doing okay on 27 cal/30 mix but when she won't drink it whats next???? Wow this has turned into my vent sesion :0) Well let me know how things work out??? Maybe we can just help each other ;0) glad for the update!! Good Luck!!
Chrissie

[Chrissie]

Oh I forgot to say Kylie is only 23lbs too. I got her up to all most 25 but now we are going back down, don't even want to take her in to get a check :0( I know they are only a couple weeks apart so I hope that gives you some comfort??? Not sure on length though :0)

[ajsahm]

Thanks chrissie! I was thinking the med was the same. but it may not work alone. So we will see. I was really happy with how the dr showed me future charting if I continue with what i was doing she would be on the chart. Nevaeh loves the pedisure. it is a 30cal on its own. The dr said that having something that is cal without mixing is better then mixing a 30 cal. But it is more expensive. We are trying to get her off the bottle. She drinks more on it but I cannot have a 2 year old on a bottle! Nevaeh does not really more during one meal but she now has 5 meals a day. that was one of the other things the dr talked about was they heart kids tend to do better on several small meals. She also said they have weird eating habits. So we are trying to figure out what works for Nevaeh. She does seem to do well with 5 meals. I do not know I have not weighed her.