BPI paralyzed the lungs of our granddaughter-Anyone else experience this?

[m&mmom]

Sandy,
I delivered my son at 10lbs 6oz two weeks early (undiagnosed gd as well). Matthew also had phrenic nerve damage, which sounds like what you're describing. The diaphragm does not pull down on the lung to allow it to fill with air. In severe cases they do need to staple the lung down.
When my son was born they thought he only needed oxygen because his lungs weren't developed fully, but a few days later when they did a flouroscopy xray it was a classic text book case of what you're talking about. He had to be transferred to a children's hospital 90 miles away and was on oxygen for three weeks. I had to learn how to put the feeding tube in through his nose because he wasn't taking all his milk by mouth.
When he came home his phrenic nerve still wasn't healed. It took him a long time to finish bottles until he was about eight weeks old. Then I tried to nurse him but it didn't work out so I just kept pumping milk for him until he was a year old. I haven't been there to the extent that your family has been but I can relate.
Thoughts and prayers going out to you and your family.
Cindy

[LeeAnne]

I'm so sorry you are going through this. Is she seeing a pediatric pulmonologist? Is there C-4 damage? I can't imagine what you are feeling. Fell free to reach out here at any time. we become like family. LeeAnne

[christy]

Hi Sandy and congratulations on your grandchild. And let me say I am so sorry to see you here. BUT now that you are, welcome. I too am a grandmother of a BPI child and yes there are a lot of problems that you will find related to the BPI. Our grandchild had feeding problems as well, had respiratory difficulties (in no neighborhood close to yours however) and actually had some necrosis of tissue around the injury, ruptured muscles, the BPI side lung is displaced somewhat and does not function as well as the non injured side. the list goes on. We do have a friend that her child had to stay on oxygen for several months as well but has recovered for the most part from that. I am glad that you found help so quickly for the baby--perhaps this means the word is getting out more and more. I know our local OBS thought they all healed. Perhaps they just hoped.

Anyway, I ramble as usual. Just wanted to say welcome, come and visit us on the general board too.