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-   -   I am not crazy validation (http://www.justmommies.com/forums/f783-children-heart-conditions/1289350-i-am-not-crazy-validation.html)

foodislove October 26th, 2008 04:52 PM

Hi all,

I have so enjoyed being a part of this group. Here's my question...please tell me I am not crazy. Jack's VSD is being medically managed, so they say that it should not be affecting his eating. Still, he fights eating. He cries and screams when we try to feed him. We have tried every combo of BM and formula, bottles, nipples, temperature, etc...that's not it! We did the barium swallow and he doesn't have reflux. He screams all of the time, inconsolably. He WILL NOT let us put im down, EVER. He screams.I think he is hungry, but he won't eat. The doctors have pretty much given us the....well, this is just the child you were given vibe. But I know I am not crazy! He was born full-term at 5.5lbs, with an abnormally small placenta that was severely infected. My husband and I are almost 6 feet. No one knows what the infection was. No one can give us any 'condition' that he might have. The ped seems to think that dropper feeding him at 3 months is the way to go. I feel like we are missing something. He struggles to be in the 2% for growth, and that's with us force feeding him. But most importantly, he seems just miserable and it breaks my heart. I don't really know where to go from here, as I am not a dr, but I feel defeated that no one else seems to think there is a problem. Is this just in my head?? Do I just have to suck it up, and have my baby be miserable indefinitely? Is this normal behavior for heart babies?

Thanks for listening,
Jennifer

MellieB October 26th, 2008 06:50 PM

Even though his VSD is being medically managed it may make feeding difficult for him. Does he get out of breath and sweaty during a feed? These are key signs that it is his heart making feeding a problem.

I'd get another opinion. Perhaps go and see a dietician and/or a speech pathologist who can watch him have a feed to see if the issue is there.

This is far from normal, even for a cranky baby.

mama2jude&rogen October 26th, 2008 08:57 PM

I agree with Mellie. Does he get blue around his mouth when he is eating?

Would you consider a second opinion from a different Cardiologist? I did not like the first round of Pediatric Cardiologists that we met with. (Children's Hopsital in Washington, DC) I got a second opinion from Johns Hopkins PC team, and was much happier with them. They actually helped up and explained things that the other physicians were brushing off when we asked.

stacyp October 27th, 2008 04:53 AM

I agree with the others.


((HUGS)) to you & Jack. Keep us posted.

foodislove October 28th, 2008 03:52 PM

Well, I got over the am I crazy bit and the warrior mom in me came out! I told my ped that we are NOT going another day with me force feeding him with a syringe and him screaming all day. It has been 13 weeks of pure hell, seeing my baby so uncomfortable and sooo hungry and not being able to make it right. We have no family here and I am at wits end. She got us an appt at the Children's Hospital in Boston for this Thursday! I have hope again. I will let you all know how it goes. Thanks for the support.

PS I don't think it's heart thing, but I don't know. He doesn't get blue. I think it is a suck/swallow thing as he juts out his tongue and then chokes and screams.

MellieB October 28th, 2008 03:58 PM

It could be his heart. He may know that feeding makes him feel awful and so juts out his tongue to push the food out of his mouth.

Keep us posted!

fiefer87 October 29th, 2008 08:46 AM

i am so glad you were able to get that appt. While it may be his heart, it could definately be a suck/swallow problem. Feeding disorders are more common than people realize and it sounds like there may be a tongue thrust (the jutting out his tongue) which makes feeding difficult, or it could be his suck swallow is not coordinated. If after talking to the new cardiologist, and the feeding problems are not related to the VSD, look into a pediatric feeding disorders clinic where they can truly evaluate his feeding.

stacyp October 30th, 2008 11:56 AM

Checking for an update. Hoping you got some answers today.

foodislove October 31st, 2008 07:17 PM

You guys are awesome! Thank you so much for the support. Being a mom is SO scary. I was really pleased with doctors that we saw at the Children's Hospital, a GI and a speech pathologist. They think that Jack's issue is not as simple as one condition, such a blessing. They think it's multi-factorial due to inefficient suck/swallow, acid reflux and his heart, all combined. They gave us a new meds and a new feeding plan, including adding rice cereal to his feeds. They will see us back in 3 weeks. Although it's not a "quick fix", I was relieved to hear that they weren't jumping to a big diagnosis. Hopefully, this brings the little guy some relief and encourages him to keep eating and keep growing. Will def. keep you posted. Hope everyone had a Happy Halloween with the kiddos and that all the babies are doing well (and mommies too!)

Jennifer

mama2jude&rogen October 31st, 2008 08:23 PM

I'm glad you are happy with his doctors, and hope this plan will help him out! Keep us updated :)

stacyp November 1st, 2008 06:02 AM

I am so glad! I hope you see a difference in his feedings. Luke had silent reflux & we found out when he had a scope for stridor (noisy breathing) They put him on Zantac & thickened his feedings with rice cereal. I saw a HUGE difference almost immediately. It was amazing. Hopefully, this will help him too. Luke had a weak suck initially due to his Trisomy 21. That has improved. Please keep us posted on his progress. And, I will keep you guys in my thoughts.

MellieB November 1st, 2008 09:59 PM

Glad you are finally getting some answers and some validation to your concerns.


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