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11 MONTHS AND STILL IN THE NICU

14 weeks early

May 2013

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LIFE IN THE PICU

Jun 22, 2008 08:07pm (EST)

On June 4th Brooklyn was flown by Lear Jet to Las Vegas from Pensacola, FL to her new temporary home at the PICU. It's been almost 3 weeks since her arrival and with some trial and error, the staff have come to know her.

They are trying to get her home and she is trying to get used to the LTV home vent.

We are just so sick of having to go to the hospital to see her and can't wait to bring her home! It's been over 15 months in the hospital.

I am also due in 6 weeks to have a baby sister for Brooklyn..totally unplanned and scary, but everything's been fine with this one.

She has pulmonary hypertension and is on Tracleer and it has really helped. The viagra wasn't working and the nitric oxide wasn't working. But the Tracleer/Bosentan did the trick and saved her life.

More to follow as we get settled in Las Vegas. It's really warm here!

Brooklyn's Mom

baby plays

drink bottle

lift up

Posted by 14 weeks early | Comments: (10) | Permalink

Feb 21, 2008 06:00pm (EST)

The one pound or less baby club is under "MEDICAL CONDITIONS OF OUR CHILDREN" I see some of you found it!

Posted by 14 weeks early | Comments: (2) | Permalink

POOR BABY'S SICK

Feb 21, 2008 05:53pm (EST)

Well, she's sick again, we made it 7 weeks or so without any antibiotics, til yesterday. She wouldn't eat, all she wanted to do was sleep. Plus she desats and brady's and they have to bag her back up.

I'm grateful the doctors and nurses care and haven't given up on her. Seems it's always something with her. I keep telling myself that she's made it this far, she's got to keep on going!

100_3129

Posted by 14 weeks early | Comments: (2) | Permalink

BROOKLYN'S DOING OK

Feb 12, 2008 05:52pm (EST)

My daughter, born last March of 2007 was 27 weeks and 1 lb 4 oz. The first 2 months went by as slow as can be. It was awful living minute by minute.

As the months went by, she was unable to wean to the canulas and ended up re-entubated, eventually getting a trach.

She is doing pretty well with it--taking a bottle, spoon-feeding and making occasional sounds like cooing.

She has very little, if any, upper body strength. But I figure she will catch up in time. She has had to continually battle staph, serratia, pseudomonis/pneumonia, the poor dear.

But she has fought her way to where we are now and we are having a great week. She is on 40% oxygen and although not on a home vent yet, she will eventually get there.

So, on Valentine's Day it will be 11 months in the NICU. Our other kids can't go in to see her and we still have to deal with senseless visiting hours. We can't even call to find out any information unless it's during visiting hours. By the way we live 2 hours away from our NICU. It's horrible. But it could be worse.

I would like to start a "one pound baby club" so that all the one pound babies out there can have a sense of belonging when they grow up, as well as their parents can have a place to connect with other people who have been through this ordeal.

This has been the most not fun experience I've ever had and we still have to find the strength to keep trudging along back and forth to the NICU.

Thanks for listening,

Brooklyn's Mom

I have hands!

mom and baby

Thumb

Posted by 14 weeks early | Comments: (25) | Permalink

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