if you have/had a lo on the vent at birth...

mommy06

How long did they stay on the vent?  At what point did you or the doctors decide that it was time to take them off?  What helped you make it day to day?

 My dd was born on 2/25 and has been on the vent since.  She was born with several issues. Overlapping fingers, pronounced forehead, high arches in her feet and low muscle tone.  She will do well breathing for a while but once she gets tired she quits.  Millions of tests are being ran, but we do not have a diagnosis yet. 

There are no words for how we feel.  All of this came as a total surprise for dh and I , I had a perfectly normal pregnancy.  It is the most helpless feeling in the world.  I cry ALOT, sleep and eat a little.  I am sooooo lost as to what to do.  ANY advice would great.  Are there any blogs that you recomend I read that helped you?  Maybe a book that helped? 

Thank you - Kelli

Mom2Toddler

I do not have any real medical knowledge of your situation but I wanted to say I am so sorry that you are having to go through this.  I never understand these things and just think it is so unfair.  I will be thinking and praying for your little one and your family. 

My little brother was on a vent for many weeks after he was born.  He was unexpected and my mom was in her late 30's.  She ended up having to have a c-section really early and he had so many issues.  He had a stroke while having brain surgery and a lot of other problems.  He finally got to the point where he could get a trach and came home but his life has been really tough. 

Good luck to you and your family.

mskolman

I am so sorry you are going through this. My son was diagnosed with a serious heart defect in utero, so we knew he would be put on a vent right after birth due to his specific heart defect. I thinking knowing ahead of time made it easier.

My son had his heart surgery at 6 days old and was still on the vent after several failed attempts at extubating until he was 1 month old. Eventually, he needed another surgery for g-tube placement, and of course they had a hard time getting him off the vent again. He was over 2 months old before he was off the vent again, after an airway surgery. We thought we might have to go home on a trach, but the surgery did the trick. My son is still on a small amount of oxygen at home, but he is doing very well. He is now almost 2 years old.

I remember the ventilator roller coaster well and it was awful. We were in the hospital for 99 days, mostly due to his breathing issues and failure to get off the ventilator. It must be hard not having a diagnosis as well. What I can tell you is that as babies get older, they get stronger and grow more lung tissue. All of this helps them to be able to breathe on their own better. Depending on your child's diagnosis, there might be other things contributing to your DD's inability to not breathe on her own. I would definitely ask the docs all the questions you have. What I learned the most from that hospital stay was to advocate for my son and make sure the docs answered any and all of my questions. At first the docs can be very intimidating, but eventually I felt part of the team.

Oh, and I highly recommend starting a Caring Bridge site for you LO. It is free and it is a great way to communicate with friends and family, while at the same time being very therapeutic for you to write out all of your thoughts and feelings. Try to take care of yourself while you are going through this. I know that is easier said than done. I don't think I will ever forget the helpless feeling and the crazy emotions during that time. Just know you are not alone and many mommas on this board have gone through something similar to what you are going through.  

nanakwaz

My son was born with several anomalies and was intubated about an hour after he was born.  At about 6 weeks we decided (because of his anomalies) that he needed a tracheostomy.  He was removed from the vent after he healed from his trach surgery - when he was just over 2 months old.  The trach was the most difficult thing we could have heard at that time but it was also like a huge weight had been lifted off of our shoulders because we knew that it was going to help him.  It has been pretty tough but, at 3 1/2 years old his airway is ready for the trach to be out but other issues are getting in the way.  We do see light at the end of the tunnel, though!

Good luck!  I know that it isn't easy.

jycarrillo

Hang in there.  DS was on a vent immediately after birth due to HIE result of placental abruption.  He was on it for over 2 weeks and also had several other issues like low blood pressure, seizures, low muscle tone and polydactyly/syndactyly which they thought was related but is actually genetic.  We still don't have a diagnosis yet, other than he's at risk for CP.  I know its hard seeing them with all the tubes.  DS would try to pull the vent out all the time so they had to pin his hands down to keep it in place. Everyday I went to see him the nurses would tell me if they had to increase his oxygen or decrease it. His lungs slowly got stronger and he was taken off and shortly after released from the hospital. I had a really hard time coping the entire time he was in NICU.  Being with my baby as much as I could was the only thing that kept me going, along with my DH and mom.  I don't really have any blogs or books to recommend, but have found that the ladies on here are really great.  Try to stay positive.

Calypso312

Our DD was breathing over the vent. It was set at 15 breaths per minute and she was breathing upwards of 40 breaths for minute so we decided to give her a try. I decided. The doctors weren't too thrilled with the idea, but I insisted. I had the thought in mind that we would never know if she could do it if we didn't give her a chance. And we also knew that if she didn't do well we could reintubate her and try again later.

Good luck. It's a hard position to be in. But God will lead you and your decision.