Update on Lilith

JoJoGee

So, yesterday Lilith was taken off of her vent for the 7th time.  For the first 15 minutes it looked like 7 was her lucky number and she was going to make it off the vent.  But, then she started to have difficulty with her breathing.  She was weezing and you could see in her chest that she was really struggling to breath.  They allowed her to continue breathing without her vent as long as she wasn't wearing herself out and her vital stats were not dropping.  After 7 hours, Lily was obviously worn out, and her oxygen requirement was up because she started dropping her vital stats.  So, they put her back on the ventilator. 

When we started out yesterday, it was our understanding that if she didn't survive off the vent this time then we could be looking at a Tracheotomy.  They don't think we need a trache just yet, just more time.  I don't want a trache, but I am so tired of time and waiting and I am heartbroken that she struggles so hard to breath on her own.  We should hopefully have a new game plan today.  I'll keep all of you updated.

jerseygirl81

I'm sorry it didn't go well today

MJHershey

I'm sorry. I hope that she gets stronger and can make it off the vent very soon.

HrH33RN

I know it must be disappointing, but 7 hours is a long time for her to be off the vent! Its baby steps, and she took a giant leap. I hope she continues to make progress. I know you dont know us, but if you need anything please let us know. You can private message me or whatever. I will continue to pray for your sweet baby.

PirateGirl04

T and P. 

johnandkristin

I'm sorry it didn't go as well as you wanted, but yay for her going 7 hours without the vent! What a strong little girl!

stillwaiting12

I'm sorry she wasn't able to come off completely, but 7 hours is great! She's a fighter and hopefully she will continue to make great strides. T&P continuing your way.

andailey

Aww, I'm sorry Lily wasn't able to stay off her ventilator today. However, that is a great sign that she is building strength little by little, and after 7 hrs. they made the decision to put it back on.

She is so adorable, and I have been praying for both her and your family during this difficult time in the NICU. I understand what you're going through. 

Mommy2Max

Try to stay positive mama.  I know its hard, but you have to stay positive for her.  7 hours is a long time for her to have been breathing on her own.  She is getting stronger every day and I have faith that she'll be off the vent soon. 

Please let me know if there is anything I can do to help.  I have been where you are and I know how stressful it can be.  Try to take care of yourself as well.

Hang in there.

Beth

sprads

Sending you bigs hugs and lots of positive thoughts! Hang in there momma!

Miller238

I can't even imagine how hard the wait/time etc is for you.  She still wouldn't even be considered full-term at this point if she wasn't born yet.  As much as it sucks, more time is what she needs right now.  Like other posters said, 7 hours may be a baby-step, but she will get stronger as time goes on.  Thoughts and prayers coming your way!!!

Megs&Nick

It sounds like they were pleased with her progress, even if she didn't get to stay off of the vent.  Yay for no trach right now!  She's making steps in the right direction!  Continued prayers that she gets stronger every day and is able to go even longer vent-free soon.

KYmama9286

I'm so sorry that today was discouraging :-( But as pp said, its all about the baby steps that lead to real progress- 7 hours is great! I'm sure it is so frustrating though and the waiting must be agonizing--I will continue to pray for you and your sweet baby girl. I will pray for strength and growth for her and I will pray for patience and strength and fortitude for you. Having a sick child is NEVER easy and you've been at it for a while now ((hugs)) Keep up the hard work, mama!

Ttimes3

My continued prayers for Lilith's road to health and home.

buckeyethor

That is a great step for her. Hopefully she can try another time soon after she strengthens and rests. Are they considering stepping down to a CPAP or straight to a canula? We went on CPAP, then vent bc the CPAP wasn't enough, then down to nasal canula.

JoJoGee

thank you all for your continued thoughts and prayers.  you all are right, seven hours is good.  in fact, that was the second longest time she stayed off the vent.  i just have to remind myself that she will be coming home, one day, and that this is just a little bump in the road to her recovery.

buckeye, to answer your question they will extubate to nasal cannuals again.  she has been extubated to the cpap, but her doctors now are saying that her lungs are good and because of her low vent settings she does not need the cpap.

sorry about no caps, i am posting from my phone and it will notlet me make caps or any other symbol besides a comma or period.