Livia

Livia's O2 support has decreased(that's good), her xray look better and so does her blood gas.
Her edema has worsened and her urine output has decreased. Dr says her capillaries are leaking fluid into her tissues. They are giving her meds to help with this. They are paying special attention to her kidneys and liver, so far OK. Her labs are coming back neg for infection but DR have her on 3 bacterial antibiotics and 1 fungal antibiotic. Please keep her in your thoughts as we go through this latest hell.

Update:
Dr are saying the edema may be linked to her adrenal glands not producing sufficient amounts of cortisol?? Who knows, they are taking a stab with this and going to put her on a 3 day course of hyrocortizone to see if that helps. Something needs to work soon, she gained 3 oz of fluid just last night. If not they are calling in for an Endocrinologist consult from CHOP or St Chris's.
All we know now is that her respiratory system is stable, she's comfortable.
Dr told a urine sample today to see if there's an infection there.
Tomorrow they may begin her feeds.

Dad held Liv for 2 hours tonight. She loved her "Daddy time".

8 week mark- can anyone think of a better term than roller coaster??

Big issue for Livia is her weakened respiratory system coupled with the edema which makes it all the harder to breath. She's on the vent and it's helping her. Her edema(swelling) is getting a little better. She is on a stronger med to rid her of the excess fluid. Dr have stopped her feedings for the past two days and she will begin back tomorrow on her new NJ tube.
Since she has not be acting herself the past few days they started her on antibiotics to fight anything that may be brewing. The 24 hr mucus culture was neg. and we'll see what tomorrow brings with the 48 result.
What stinks is that all the progress we were making with her the past 2 months is gone..we are starting all over with her.

Nina is doing great(thank goodness) The stuff around her nose is from when she is on CPAP to keep the prongs in place. She is doing really good on the cannula and if all goes well she will start "sprinting". "Sprinting" in when she takes turns during the day on CPAP and cannula. She is up to 2.5 pounds.

Two steps back

They told us that the NICU is a place where we go one step forward two steps back... (whatever)
This mornings call into hospital said that Livia had another bad night(lots of A's and B's) so they are putting her back on the ventilator later this morning for the next week or two so she can chill out, relax, and grow. We remain optimistic for her outcome.

PartII

In addition to Livia's tube down her she is getting her food through a NJ tube which is a feeding tube which goes directly into the jejunum, a part of the small intestines.She used to get the food through a tube that went directly into stomach(the kind Nina has and most of the kids here in NICU land have) but Dr's said it was maybe contributing to her breathing issues. Today's lung x-ray was not the greatest. A lot of white (white in xrays is bad) Basically today sucked for Livia...

Nina is going great. She's down to 23%O2 support on CPAP and I held her for 2 hours on cannula.
I am afraid to get too excited about her progress and jump to paint the nursery b/c anything can happen ....it can all fall apart.One day we are up and one day it just falls apart.

She's Too Young to Know Any Better

At this point in her life, Nina doesn't know any better. She doesn't know that each summer the Phils are going to break her heart, but you have got to love her loyalty. Nina and Livia have to be the world's smallest Phillies fans and we will be sending this in to the Phils, can you say free tickets! Each of the girls has an infant Phillies hat and Livia has the ticket from opening day hanging in her pod.

Not much to report today, Judith got to hold Livia this afternoon and I got to hold Nina tonight, Kangaroo style. Livia continues to show swelling, still on the CPAP. She has bradycardia and apena episodes now and again but the nurses say she does fine most of the time. Feeds are increasing and hopefully soon we stop the TPN.

Nina continues to be a champ. Her O2 levels on her CPAP are down to 25% and she did 70 mins on the nasal cannula tonight with Dad. She settles in nice when the nurse puts her on my chest and sats really well. Nina will continue to take the nasal cannula for a spin once a day as she builds up her strength.

Keeping The Faith

This afternoon I got to finally hold Livia. It went OK up until these pictures were taken and she dropped her heart rate and O2 sat and had to be bagged while on my chest.... All in the life of a preemie mom... Livia is swollen and yellowish from the high billirubin. She's still on CPAP and does good for the most part. I think her face is a bit swished in this photo from the CPAP. They are increasing her feeds to 10 cc an hour. The sooner she gets food increased the sooner she will be off the TPN crap and return to the pinkish cutie she once was.

Another big night for Nina! Dad did Kangaroo with her for an hour on the cannula. She did great! Her sats were high, she was blowing bubbles with her spit... Jason may have exhaled 3 times during this hour hold.

Cann-u-la Believe It?

Huge night for the Fightin' Foxes. Nina was allowed to take a try on the nasal cannula: http://en.wikipedia.org/wiki/Nasal_cannula (thanks Jen C for the link)
She did really great, it took her a few minutes to get used to the different prongs(she sneezed a bit) but after a while she settled in and so did we. We want to thanks Nurse Sharon for making this happen for us tonight(we were going to wait until Friday.


The plan now is to let Nina breathe on the cannula once a day while doing Kangaroo for as long as she can tolerate. WE ARE SO PROUD OF NINA!! Livia had a good day. She is going to up to 7cc over an hour. She really needs to get up her feeds so we can put the TPN away. Her blood gas did not come back so good (Carbon Dioxide too high) so the plan is to do another blood gas tomorrow and decide if she should come off CPAP and go back on ventilator. This would not be the end of the world. Livia may just need some extra time to get it together. Tonight she had bad Bradycardia episode so I think she may be trying to tell us she needs a rest.

Day 51

Look what Nina and Livia made for us for our anniversary!

Nina is being a good girl today. She's up to 2.3 oz!
She is down to 28%O2 on CPAP. I got to hold her during the day and she was being so good that she was able to get out for a second holding by Dad. Her feeds have been increased to 26cc every 2 hours and she is handling the feeds great.Keep up the good work sister Nina!

Livia is doing OK with her CPAP. She's st 48%O2 and no having any episodes. Her blood gas results are not stellar so she is staying at the high level of 7 for CPAP for now. Livia is weighing in at 2.5 oz. We do not know how much is fluid since she is still swollen. Livia was having some residuals from her feeds so they decreased her feeds to 4cc over and hour and that seems to be working better for her.