new baby in town

libby1205 · #1 01-19-2009, 09:07 AM

I accidentally posted this as a reply and Im reposting it as new thread sorry from the newby.
Hello to everyone,
We had our twins in july at 25 5/7. Our Brookie passed away after a PDA ligation in august. Isabella was transferred to CHOP for a big belly and has been here ever since. We were also trached on 12/12 for subglottic stenosis after a couple failed extubations. We tried to hold out for the 'lets let her grow and see if she grows out of it' but alas here we are with a trach. We have moved to the step down unit to train to go home . I am lucky enough (if u call it luck) to also work here so I can peek in and see her while I am working. I've slept home once since we lost our other daughter and only because I had a cold. Just like everyone else here we have had a long hard road- six months of hard time and counting. Isabella's belly is still big and full of gas so we are still waiting on a g-tube decision. I started looking around this site after our first failed extubation in october and I've gained alot of insight from reading everyones posts and I want to thank you all for giving of your very precious free time to reach out to others. Talk to you soon Libby
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Mommy to Isabella and Brooke ( 7/18/08) ex 25 weekers-[Brookie passed away 8/31 post PDA ligation due to severely premature lungs Isabella- trach 12/12 for subglottic stenosis- awaiting gtube decision; In PCU training for home!

twintotwin · #2 01-19-2009, 09:39 AM

Hi Libby- Welcome to the board. I am very sorry about the loss of your baby girl. There are quite a few parents here who've lost as well.
I'm not very far from you so feel free to contact me when you set up home care. We might share the same agency.

Hang in there and keep us posted on Isabella.

libby1205 · #3 01-19-2009, 09:58 AM

thanks so much- we have our agencies set up we are meeting some of the nurses this week and they are putting together a schedule for us. We didnt know who to chose even after interviewing them- just because the car salesman is nice doesnt mean the car is going to make it off the lot- my husband was a used car salesman he hates it when i say that but its true!

bryantem · #4 01-19-2009, 10:37 AM

I am pretty new too. I have 3 kids, Alyssa is 9, Robby is 7 and baby Addisyn was born at 28 weeks on Oct 7, 2008. She was trached on 12-22-2008 after a life threatening episode and failed extubation attempt. Her diagnosis is tracheomacia and was discharged from the NICU a week ago today.
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libby1205 · #5 01-19-2009, 12:54 PM

are you home yet? or just discharged from nicu to a different unit?

faywrayy · #6 01-19-2009, 01:45 PM

Welcome Libby! My daughter Kate spent 2 1/2 months in the NICU at CHOP and another 10 days in the PCU. I lived there with her as well. Who are your doctors?? Which ENT do you see??

Good luck getting home soon. Being in the PCU is definitely a step in the right direction!

libby1205 · #7 01-19-2009, 02:17 PM

Our ent is jacobs and pulmonary is panitch. we got to pcu 10 days ago and they are saying 2 to 3 months more but we got alot done in the nicu so maybe not so long- she was 6months yesterday so needless to say we are ready. I think you'll agree living here is not so bad shes here so thats where I wanna be. Not the situation we would have picked but you know..

JWorthington · #8 01-19-2009, 03:31 PM

Hello and welcome. I'm sure this is a club you'd prefer not to be a member of, but it is a great club with lots of support and advice when you need it. Looking forward to getting to know your family.

Julie x

WeAdoptKids · #9 01-19-2009, 04:25 PM

Hi Libby,

Make yourself at home here. This is a great group. I am sure you would rather be somewhere else, but since this is the path oyou are on, you have sure landed in the right place, We all look forward to getting to know you better.

Roberta

faywrayy · #10 01-19-2009, 06:47 PM

Quote:

Originally Posted by libby1205

Our ent is jacobs and pulmonary is panitch. we got to pcu 10 days ago and they are saying 2 to 3 months more but we got alot done in the nicu so maybe not so long- she was 6months yesterday so needless to say we are ready. I think you'll agree living here is not so bad shes here so thats where I wanna be. Not the situation we would have picked but you know..

Yea living there isn't the best but you do what you have to. Kate's ENT is Jacobs as well. He trached her (11/06) and decannulated her without surgery (7/08). I could have kissed him I was so happy. He's really great.

So she's been trached since 12/12? It won't be 2 or 3 more months if you tell them it won't be. Kate was trached 11/17/06, left the NICU 12/12/06 and was discharged from PCU 12/20/06. I made it clear I wanted to get the training handled and do what I needed to do. Talk to the attending and let them know when you're ready to go. Get a time frame set up. I insisted on a more concrete calendar so I'd know what I needed to do, and what day i was doing it. The PCU nurses were great and really helped facilitate getting us out of there.