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Preemie

Your preemie support group and discussion community

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Gene testing, precision medicine, and shared information

Brian's journal

Brian

gene-testing-precision-medicine-and-shared-information

Dear members, How should we be thinking about our genetic information when it comes to disease? It’s a question many of us are asking here on Inspire, sometimes very intensely, depending on the nature of the disease. The information we get from our genome can have a direct impact on so much, including how, or if, we can be treated for certain types of disease -- that is the nature ... Read More

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

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Inspire's New Search Engine

ErikInspire's journal

ErikInspire

inspires-new-search-engine

  • 72 Replies
  • Processing ...

I’m very happy to share with you Inspire’s new search engine. We believe the recent improvements that we have made will make it much easier for you to find what you are looking for. The search box at the top of the page (the magnifying glass if you are on mobile) will allow you to search across All Communities by default, or narrow it down to a single community that you belong to ... Read More

Preemie

Room air challenge/severe BPD

In: In the NICU/PICU

Chelsey3

room-air-challenge-severe-bpd

200124

  • 11 Replies
  • Processing ...

My LO was born at 29 weeks, he is 41weeks gestation tomorrow. He has severe lung disease and is currently on low flow oxygen. He is eating great and gaining weight, the only thing keeping him at the hospital is his lungs. He only lasted 4 minutes during his room air challenge before dipping to 58. I am feeling so discouraged that he will always be on oxygen. Anyone have experience ... Read More

Preemie

Micro Preemie has to get a trachea

In: In the NICU/PICU

Tracy5011

micro-preemie-has-to-get-a-trachea

200124

  • 3 Replies
  • Processing ...

I just was blessed with my grandson. He was born at 23 weeks, weighing on 1.1lbs. He is mow 5.5 pounds and is 12 weeks. My concern is he can't breathe on his own, and has been on the vent since birth. The doctors are saying his lungs are not developing and the will have to place a trachea in. I'm so afraid. Currently they keep him sadated at all times. He has had blood transfusion ... Read More

Preemie

Ssi lump sum

In: At home (years 1-5)

Twinmamita28

ssi-lump-sum

200124

Hello, Can you guys help me with something please? I have a set of twins who were born 1 pound each and both receive SSI. Both babies got the 30$ every month until discharg, they recieved the full 735$. Daughter 1 was in nicu for 3 months and recieved back pay/lump sum upon discharge. However, daughter 2 was in nicu/picu for a year and never recieved any lump sum at all. I was told ... Read More

Update: Kayden made it back to FL🌞

K-buddy's journal

K-buddy

update-kayden-made-it-back-to-fl

Kayden is back in FL and waiting to be discharged from the hospital to home. He's almost 19 months old and will be going home in a few weeks for the first time!! He's healthy, happy and doing great! Born at 24 weeks weighing 511 grams to now weighing 20lbs! He has overcome so many obstacles and defied the odds, he's a true miracle and my hero!! Praying he'll continue to stay healthy ... Read More

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Preemie

NY Times article about NICU care

In: Open discussion

Abby804

ny-times-article-about-nicu-care

200124

Hi everyone, I read this article in the NY Times, and I have to vent! https://www.nytimes.com/2017/07/13/healt h/opioid-addiction-babies.html?_r=0 The article is about opioid-addicted babies and how they are taken away from their mothers and placed in the NICU. But my takeaway is different from the general reaction (and probably similar to the reaction of folks here!) -- The article ... Read More

Preemie

Sophia with half of both cerebellum is missing since birth

In: Open discussion

SophiaDoga

sophia-with-half-of-both-cerebellum-is-missing-since-birth

200124

Hello everyone, I have not written here for ages because we have been incredibly busy with doctors, physiotherapist and so on. When I first started a discussion group, Sophia was about 6 months old.. Sophia is now almost 26 months old, not walking, not talking but otherwise is relatively healthy. I greatly appreciate any information on any similar cases please.. We've have been trying ... Read More

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