Ellie Update!

mcarter127

Hey guys, I am so sorry it took me so long to get back here to update. Ellie has finally become more stable!!! She's had a few very quiet days & they've even been able to come down on the oscillator settings! 

Turns out she was in DIC on Monday & had no clotting factors in her blood at all. She has bruises & hematomas basically everywhere anyone touched her. The Drs have all told us that they've never seen a baby her size survive DIC & they are just in awe of our little girl! Each day, after rounds, we get a few nurses & drs come by just to see the "1lb baby who made it through DIC" it's just crazy! 

They think that the bleed within her liver is what sent her into DIC. They did another cranial US & it showed the Grade I on the right & a Grade III (was a Grade II before her crisis) on the left. The neo was just relieved that is wasn't a Grade IV since she got moved around a lot on Tuesday while she wasn't clotting. We'll just have to wait & see what the effect of that will be later on down the road. The great news is that she is clotting now & has stopped actively bleeding. 

The hematoma within her liver is 4x5x9 cm long! Considering Ellie is only 27 cm long, this is enormous!  They estimate that it is about 90 cc of blood. They have no idea what caused this & nobody here has ever seen this before. They think that she may have had an AVM (arterial venous malformation) within her liver that then ruptured & caused the cascade of events. The other theory is that she has a tumor inside her liver that began to bleed. They won't be able to tell until a lot of that blood reabsorbs & they can get clear images of her liver 

The plan for now is to just leave her alone at least for a few more days so she can really rest & get her strength back up. Her PDA is starting to cause some issues with her blood pressures so they think they'll need to address it fairly soon even though they were hoping to have her much bigger for the surgery.

We have a fb update page for her & I usually get on there to update at least once a day. I can add anyone here who is interested. Just send me a PM with your name & I can add you if you'd like. Thank you so much for all the T&P'S, they've really carried our family through! This has been the most terrifying week of our lives & I am so thankful our little Ellie Bug is such a fighter! 

punky917

Sounds like Ellie is truly a little fighter! Keep fighting LO-we are all pulling for you! Thoughts and prayers will definitely continue and thank you so much for the update.

solemnlyswear

She is one strong little girl. My thought and prayers are with all of you. Keep on fighting Ellie.

ahollo02

I am so happy she is stable!!!!! Bless that little babe!

pathfindermon

Thank you for updating us! I'm so glad that she is stable! I will continue to pray for sweet Ellie and your family.

ashk7

Wow! What a strong little girl you have!!! So glad things have stablized for you all! I hope Ellie is resting comfortably, she sure does deserve it! Continued thoughts and prayers for Ellie and your family! Hang in there mama!

jcsntms06

Been thinking about you and little Ellie. Keep up the fight little one.

Pips09

I'm so happy to see you update with good news! What a strong girl you've got there. Keep fighting, little girl!

caden1206

I am so glad to hear some good news.  She is definitely a little fighter.  Continuing to pray for her.

thishappyhouse

Im so relieved to hear that she has stabilized.  Im hoping for lots of boring days ahead for you guys.  Have they tried treating her PDA wit indocin yet?

tlk432

What a tough cookie!

Mrs. Alice

What a litte miracle baby!  Keep fighting strong Ellie!

mcarter127

thishappyhouse:

Im so relieved to hear that she has stabilized.  Im hoping for lots of boring days ahead for you guys.  Have they tried treating her PDA wit indocin yet?

unfortunately she can't get indocin because it can act as a blood thinner & because her kidneys still aren't functioning well.  I am hoping they can hold off a little longer cause she's still so tiny. 

MrsRKJ

Thank you for the update - I've been thinking about you & your sweet Ellie.  What a fighter she is, that is incredible.  Continuing to pray that things continue to improve

MinaE01

Great update! Keep amazing everybody, little Ellie!

thishappyhouse

mcarter127:

thishappyhouse:

Im so relieved to hear that she has stabilized.  Im hoping for lots of boring days ahead for you guys.  Have they tried treating her PDA wit indocin yet?

unfortunately she can't get indocin because it can act as a blood thinner & because her kidneys still aren't functioning well.  I am hoping they can hold off a little longer cause she's still so tiny. 

 

That makes sense.  Hoping she stays stable for a while and gives them options for treating the PDA.  FWIW - the NICU typically considers PDA surgery routine once they are critically stable.  Obviously nothing is routine when it is YOUR teeny tiny baby though.   

sdtchica13

That is one bad a$$ little peanut you have there! So glad she is stable and things are looking up!

kwells1

So glad she is becoming more stable!  Thoughts and prayers to you and your family!!

DrRx

I'm so glad that she is more stable! Thanks for the update, I've been wondering how little Ellie was doing.  Stay strong Ellie and momma!  Continued T&Ps for you all.  ((((hugs))))

vpr105

Thinking of you and your family and praying for little Ellie!! Stay strong Mama, sounds like you've got quite the little fighter!