First set back...

Carolina Panther Fan

After a great first week, DD had her first set back Yesterday she was over stimulated during care so the Doctor thought it was best to put her back on the ventilator and let her rest a bit. Also yesterday she had her first blood transfusion due to her being anemic. This has been a very emotional 24 hours for me and the fact that my husband is giving his Brother daily updates and having my SIL ask me again what she was told is really getting on my last nerve today. How do you cope with the same questions with out being rude?

FutureMrsDenman

We sort of had a "point person" who dealt with the family for us.  We gave them pretty detailed updates and they made calls or sent e-mails to update the family.  They answered questions they would and sometimes asked us questions for clarification.  But that way WE didn't have to talk about it a lot and answer the same questions over and over. 

I'm sorry about the set backs!  We had a couple blood transfusions and several breathing setbacks on our NICU rollercoaster.  Here's hoping there is an upswing soon!

clyoungsey

Set backs stink....so sorry.  It is easy for me to say it will get better, because I know it will, but when you are in the trenches, it feels like FOREVER...

This is exactly why I blogged...it was my way of reaching mass people with out personally connecting with them, which would have driven me off an emotional cliff!  (hugs)

Ali05

I'm sorry! Remember it's ok to cry if you need too. The downs are so trying- praying for an upswing soon. My sister was the point of contact for everyone-including my BFF. I just wasn't prepared to deal with people while DS was in the NICU. Its so exhausting!I would also recommend a blog (if you can make time for one or assign some one else to do updates). (Hugs))

mhop

It is so annoyingly true that the NICU is a rollercoaster...2 steps forward, 1 step back.  It's quite common for preemies to go back on forth on vents and CPAP, etc as well as the blood transfusion.  Each time DD got a transfusion, something great happened shorty thereafter (got off the CPAP, got out of the isolette, started taking more feeds, etc).  

We also had a blog that we asked folks to check.  DH handled most contact with folks because it was just too stressful for me...

mhop

btw- I see from your screen name that you're a Panther's fan.  Are you in Charlotte?  We're from Rock Hill and our baby was at Presby's NICU.

dmblack

Hang in there.  It does get better.  Your little on just needs time to grow.  Because it was an emotional time I actually set up a Caring Bridge website for people to go and check on updates.  We sent out a blast email to all our family so that they could check the website.  This way I didn't have to tell the same story over and over.  It also helped me cope with all of my emotions.  I'm so glad that I set up the site because now as I work on Savannah's scrapbook I have all of the details on what happened each day as well as all the guest book entries.

Carolina Panther Fan

mhop:

btw- I see from your screen name that you're a Panther's fan.  Are you in Charlotte?  We're from Rock Hill and our baby was at Presby's NICU.

 

Actually we live in York and she's at Presby too. Small world.

mhop

Carolina Panther Fan:

mhop:

btw- I see from your screen name that you're a Panther's fan.  Are you in Charlotte?  We're from Rock Hill and our baby was at Presby's NICU.

 

Actually we live in York and she's at Presby too. Small world.

It is a small world.  Our primaries were Anna Hunter, Christine Opela, and Courtney Whittaker (our others have since moved).  Those three are great if your looking for primaries.  Deb Darbee is also awesome but she had 3 primaries when we were there so she couldn't take any more.