Any parents of young children with lung issues?

Hi there, I am currently pregnant and I expect to have to deliver my baby girl very soon - probably in the next few weeks - I am only 23 1/2 weeks now. I had major complications occur beginning 5 weeks ago and my amniotic fluid is now dangerously low, and the doctors suspect my baby may be born with pulmonary hypoplasia.

Does anyone in this group know anyone, or have personal experience, with a baby being born with this? Or preemies who were on a vent for several weeks after birth? I am terrified and aside from seeing "neonatal death" as a possible outcome I would love to hear some of the stories where babies wound up being okay... Or at least, how your children managed with longer term pulmonary issues. Meeting with the NICU doctors helped a little but it's different coming from the perspective of a parent.

Re: Any parents of young children with lung issues?

I'm sorry that you have to deal with these complications. Have you posted on the parenting and/or pregnancy board? They tend to get more traffic and maybe someone has experience with this or knows someone who does. Wishing you and your baby good health.

Any parents of young children with lung issues?

Try the preemie board on babycenter. I'm not a fan of the birth boards over there but the preemie group and other special interest groups can be very helpful. Hope all goes as well as possible for your little one!

Re: Any parents of young children with lung issues?

My DS was born at 38 weeks but was whisked to the NICU minutes after being born for breathing complications. He wound up with aspiration pneumonia that should have resolved quickly but wound up intubated, on a jet ventilator, spiked a fever etc. He came home at 40 weeks and then was rehospitalized at 3 months old with RSV - back on cpap and almost needed intubation again. The first year of his life he had a "stridor" (wheeze) and was diagnosed with Reactive Airway Disease (RAD). I'm happy to report he grew out of it all. He is now 9 years old and no longer has asthma. I would say the first five years he lived on a nebulizer during the winter but thankfully these kids are so resilient! Good luck to you and hoping for a very happy ending!

Re: Any parents of young children with lung issues?

Thanks for the replies. I was kind of looking for personal experiences which is why I posted here but for some reason was nervous about the bigger audience of the parenting board! Thanks so much for the baby center forum rec - I've been reading on there a ton since seeing your suggestion!
And thank you to the PP whose son had RAD - so glad everything turned out okay, even if it was rough for a while!

Things are looking up a little bit for me, my baby looks great on the scans, but the fear is that we can't know if she will have the hypoplasia until she's born. It's a very scary position to be in but I am hoping and praying for the best. Thanks so much for your thoughts and wishes for us!