Day 50

I cannot believe we have been here for 50 days. I hope the next 50 go just as fast and less stressful. The girls are now 7 weeks old. Today was the first time I heard any sort of "baby noise" (cry, whimper grunt) come from either of them (It was Nina)

Nina is weighing in at 2.1 oz. She's on day 4 of CPAP and doing really good . She's at 29% O2. She is testing negative for MRSA from her first culture. They will test her two more times (a week apart) with the hopes of more negative results before she's released into society. Same with Livia. So I don't think they will be reunited until mid-May. Until then it's gowns and gloves all around which is really getting on my nerves....

Livia did not have a great night. She did not sleep and could not get comfortable. Her O2 is up around 54% and her CPAP level is at 7. Her feedings have increased slightly to 4cc a feeding but b/c she's been on TPN for so long her liver is getting checked tomorrow via ultrasound b/c her billirubin levels are high.
They are given her a week long treatment of hyracortizone to help with swelling as well as lasik.
Since we are not getting the liver ultrasound until tomorrow,they are giving her phenobarbital in the meantime which is sopp to help.
Dr is hopeful that the extra swelling is the reason her breathing is not so hot. The meds should work(if this is the case ) in 24 hours. He told me we just have to wait and see---easier said than done.

March of Dimes Day!

So far Team Fox raised 3300.00!! We cannot thank everyone enough for their thoughtful and generous contributions in the memory of Georgia. Today's walk was great. Thanks to all who came out and supported us. Next year we look forward to pushing Nina and Livia in their double stroller.

Nina is doing great on CPAP. She has completed her third day and she's down to 30% O2 support on level 5.
CPAP has three levels 5 to 7. We like to see them set at 5.

Livia has completed her 7th day on CPAP. She's at 40% O2 on level 7 b/c she was having some troubles today keeping it together with breathing like a big girl. Drs are going to see how she does tomorrow and they may need to put the tube back in for ventilator (damn) Her swelling is still an issue, but has improved a bit.

Nina and Dad CPAPing and feeling fine

Here's sweet Nina is her scuba gear... no I mean her CPAP gear. Nina had a good day. She's down to 32% O2 support and is pink and feisty as ever. We just need her to chill out on the leg lifts so she can get over this 2 pound stall she's at.
Her routine head scan came back negative and so did her 48 hour MRSA culture. Good going Nina Girl!

Nina without the tubes and nasal prongs!


Livia has a bad case of edema(swelling)..She requested no photos b/c she says she looks too bloated. In addition to the edema, her blood count was low so she received blood transfusion today and will get the rest tomorrow. She's getting the lasik to help her pee the fluid out. Her O2 is up a bit for extra support. We are hopeful the blood will help her out.

A good day all around(finally)

Today Nina got rid of her vent tube. She's had it in since April 8th and we are thrilled that she's on CPAP now.
She's doing OK, on 35% O2 support and breathing like a champ. We are rooting her on!
Her 24 hour mucus culture came back negative today so we are hopeful that she'll be out of contact isolation room next week.
Lesson about CPAP: Stands for continuous positive airway pressure. Unlike a ventilator, the CPAP doesn't actually mechanically breath for the baby. The CPAP provides continuous air pressure that makes it easier for a baby to inflate their lungs when they inhale.
Livia completed her 5th day on CPAP. She's down to34% o2 support and doing great. Tomorrow they are going to swab her nasal to get culture so we'll know in a couple days if she's bug free. Livia is still swollen so they are giving her lasik to remove excess fluid build up. Livia had her first bowel movement since last Friday which was good news.

Day 46

Today I held Livia then Nina for a while-no kangaroo since we still are wearing gowns.

Livia is on her 4th day of CPAP. She's doing well. Her O2 support is at 38%. (room air is 21%)She'll let us know if she can go lower. I really hope she can stay on CPAP this time.
They FINALLY started her feeds today. She's getting about 1 cc continuous feeds so it's like we are starting all over again with the feeding. She has not had a BM since last Friday so hopefully she can make that happen soon.
Today is the last day of antibiotics and they are doing a nasal swab for tests on Saturday to see if we kicked the bug.
Nina got her second day of blood transfusion today and she's very pink. Her vent settings have been lowered to 40 freq and 27% O2. Tomorrow they will do a blood gas, if that comes back good, they will take the tube out. Nina was 'promoted' to 25cc (30cc is 1 oz) of milk over 2 hours then 2 hours off. Today they took a mucus sample(sputum) from Nina today to check how we're doing with the MRSA. I believe they want two negative results before they set us free out of the Contact Isolation Room. I assume we will be staying in this room for another 10 days or so.

EYE CHECK:The girls got their eyes checked Tuesday night and it was a good report so far-just the immaturity.
The Eye Doctor will come back in two weeks to check for ROP.
HEAD CHECK: Livia got her head scan yesterday(they do a repeat scan from the initial 3rd day of life scan) and it was clear. Nina did not need one at this time b/c she had a few back in March.

MRSA MRSA everywhere....

Livia loves being off the vent. She's breathing like a big girl. Hopefully this will last longer than our record of 7 days. This photo was taken during care when her CPAP stuff is off. She's a cutie.

Here's Mom and Livia!









Nina has a roommate named Rachel who also is on a vent and contracted MRSA.
Our new routine during this hell phase is to visit Livia first then see Nina then we must leave.
We cannot go back to see Livia(even if we don't touch her) in order to try not to spread the bug.
I'll tell you, if this crap doesn't break the spirit, I don't know what does.
Tomorrow's another day.

ATTN:March of Dimes Walkers!

RAIN OR SHINE!!

Registration is at 7:30am. ...

Bucks County Community College
West Gate Entrance
275 Swamp Road
Newtown PA, 18940
4/29/2007 7:30 AM registration
8:30 walk begins

Please read you personal page with March of Dimes for more info.