Update on Lilith

JoJoGee

So, it has been about a month since I have posted.  Lilith got her trach on April 8, her original due date, and took to it wonderfully.  She is on a little bit of oxygen (1/8 of a liter), but came off of the ventilator and cpap very quickly (within days).  We spent the next 3 weeks working with her feedings.  And, as the days passed, it became obvious that it was going to take quite a long time for her to feed orally (doctors are thinking 3 - 6 months or so).  So, this past Thursday we had a feeding tube (g-tube) surgically placed inside her stomach.  She has had a rough weekend since the surgery - bad reflux, weight loss, reduced feeds, skin break down around her trach.  Then, yesterday, she had another scope of her airway. And, it looks like Lilith will have the trach longer than we originally anticipated, 2 years instead of 1.  Also, before she can be "decanned" she will need a surgery to remove all the scar tissue from her vocal cords - this will ultimately affect her voice (though it's not like we will ever get to hear her original voice anyway).

All in all, it has been a tough road.  It seems like whenver we have one thing figured out, another problem arises ("Okay, she's a preemie, she will have to stay in the hospital for several months"..."Oh, wait, now she needs a trach.  Well, we guess that's okay - we can do anything for a year"..."Wait, so now she needs a feeding tube?"..."Now she'll need her trach for 2 years?")

But, it's not all bad.  I am currently waiting on a call from the Medicaid office.  We are applying for a medicaid waiver so that we can have some in-home nursing care. And the moment that we are approved is the moment Lilith can finally come home.  Right now, we are hoping against all odds that we can be approved within a couple days, because the NICU is ready to discharge Lilith on Thursday.  So, if anyone has any experience with Medicaid and can offer some tips, I'd be most grateful.  Otherwise, there's the update!

Missbollinger

((hugs))  You guys have been through so much with her already, hope everything works out well and your little girl can be home very soon!

DRockH

Saying some prayers for you guys. I am so sorry you are going through this.

addslove

Thanks for updating us. You all have been through so much, I hope you get some good news soon and can take your precious Lilith home. Continued prayers for you all!

cat81305

Thanks for the update!  HUGS to you for going through all this!  Try to stay strong and we will continue to pray that she gets stronger daily!!

allobosc

HUGS to you and prayers that you all continue your amazing strength.  I hope she gets to come home soon.

Ttimes3

Thank you for taking time to share an update with us. I will continue to pray for strength for your entire family, especially Lillith (although, I have to say, you all have exhibited more grace and strength than I could ever imagine). Hang in there, mama!