CONFERENCE and bad news...then good news (ups and downs again)

2-18-10

We had a conference about Riley today with the whole family. They told us that she has a level 4 brain bleed on BOTH sides and that if we decide to continue treatment (and not de-escalate care and let her die) that there is no telling what the extent of her disabilities will be until she is much older. They said she might not ever be able to feed herself or walk or talk but we all said WHO CARES!

2-21-10

Both girls are 13 inches long now!

Riley weighs 2 lbs 6 oz

Liz weighs 2 lbs 5 oz

and both girls are eathing 8 cc every 3 hours!

PROGRESS!!!!

2-22-10

Riley's liver is swolen and her liver enzymes are "wierd" (dont you love doctor terms)

2-23-10

Riley pulled her breathing tube out today (guess she was tired of it) so they put her on a CPAP to see how she would do and she did great! no more vent riley!

COME ONE ELIZABETH! get stronger!

2-24-10

6 weeks old! (30 weeks gestation)

Riley is now eating 20 cc!!! Liz is now eating 14 cc!!

2-25-10

Now they think Liz is having siezures :/ they will do an EEG to make sure.

Riley is getting sent back to the hospital by mommy tomorrow!

2-26-10

Riley is back at the original hospital today!

Liz's EEG was normal! they tried to switch her to a conventional vent but she couldn't handle it so they had to switch her right back to the Jet vent :/

2-28-10

Got to hear Riley cry for the first time today!!!!! (which was SO exciting at that point in time)

Liz is still at the other hospital but slowly getting better. They gave her steroid shots to help out.

2-11-10 WHAT A FREEKING DAY!!

Elizabeth's hospital called me and said she was not stable and doing pretty bad that they would have to do her PDA ligation today (without me there!)

Riley's murmor opened back up and she is doing bad so she will be sent to the same hospital as Liz today to get her murmor fixed too :/

1 pm Liz went to surgery
5 pm Riley was airlifted to charleston

Liz's surgery went well and Riley got there safely. they did a spinal tap on her to make sure she doesn't have meningitis and also upped her fluids because her glucose is low.

2-12-10
GOT TO HOLD RILEY FOR THE FIRST TIME TODAY! (kangaroo care)
Elizabeth still is not stable enough to hold :/

2-13-10
Liz is doing even worse :/ she is HUGE puffy with fluids :/
Riley weighs 2.5 pounds now and is doing great.

2-15-10 found out Riley has an infection resistant to antibiotics so now she is on isolation :/

2-16-10

They did Riley's PDA surgery today and she did great! they said they might even be able to take her off the vent next week.

Riley's Resevoir Liz's grand positive infection

2-09-11
Riley had her surgery today to have the resevoir put in to drain the spinal fluid from her brain to her stomach.
She did really good and was able to stay on conventional vent after surgery

Liz is very sick (and very far away from mommy :/ )
She has a grand positive infection and has to have antibiotics for 7-10 days before they can do surgery

Elizabeth's journey to a new hospital including compressions, bowel issues, fluid in her chest, and platelet issues all in 1 day

2-06-10
They decided to air lift Elizabeth to a new hospital today where they are equipped to do her PDA ligation surgery.

WELL...when she got there

they had to change her breathing tube to a bigger one because they said the one she had in was leaking air and that they had to BAG her and do COMPRESSIONS to get her back :/

They also said something was wrong with her stomach that is was blue and swolen and their was low bowel gasses on her x-ray so they quit feeding her

They also said her pic line was leaking fluid into her chest and that her platelet count dropped dramatically in 3 days so they thought she had a funful infection :/

She now has 4 iv's and is too sick for surgery :/

Back at home...Riley is doing good. she is eating 7 ccs now!

phenobarbital, infections, and poopy diapers!

skipping forward a couple days...

2-02-10
Elizabeth might have pneumonia. she is on 100 percent oxygen and 3 different antibiotics :/

2-03-10
3 WEEKS OLD!
got to change Liz's diaper AND take her temp today!

NOW Riley is on 100 percent oxygen :/ her head is 24.5 cm today :/

2-04-10
Now Riley is having siezures they started her on phenobarbital today
Got to change my first poopy diaper with elizabeth today! yay!
i also got to change Riley's diaper and take her temp today!

infections, spinal fluid, brain surgery, and lasix :/

1-29-10
I got to change Elizabeths diaper for the first time today!

Riley...in the pictures you will see how her head shape changes. This is the day we found out she had spinal fluid in her brain.
They said they would have to put a resevoir in her brain to drain the fluid to her stomach :/ brain surgery on a 1 pound 12 oz baby!! her head grew from 21 cm to 22.5 cm in 2 days.

1-30-10
Riley's head is still growing it is 30 cm today :/
her breathing tube came out while "daddy" was in there. he got to see her without anything on her face for a brief second.

Elizabeth today weighs 1 pound 15 oz the nurse said this is BAD because it means she is retaining fluid and she will have to give her lasix to make her pee.

1-31-10
Elizabeth weighs 2 lbs even tonight they still hear her heart murmor

Riley weighs 1 pound 13 oz. her head is 23.5 cm today :/ and they did a CBC on her and found out she has an infection

UPS AND DOWNS IN THE NICU 1-23/ 1-28

1-23-10
Elizabeth had a lot of residuals with her feeding today (spit it back up) so they had to give her a suppository and decrease her feeding to 1 cc every 4 hours. She got another Echo and her PDA is still there.  She weighs 1 pound 9 oz now! and she gets to wear her first dress tomorrow!

Riley started ibuprfoen today for her PDA. They decreased her feedings to 1 cc every 3 hrs.

1-24-10
Riley was put on the oscillator vent today (doctors say its just like the jet but helps with CO2 levels)
Elizabeth was put back on the Jet vent today

Riley is not eating at all anymore and Elizabeth is only eating 1 cc every 6 hours (they said this if from the PDA medication upsetting their tummies)

1-25-10
Really no change in anything today!

1-26-10
Both girls doing good today.
Riley's brain ultrasound still shows L4 bleed on the right side.
Riley was on 67 percent oxygen this morning but by 1130 she went down to 32.
Liz is on 50 % oxygen and now weighs 1 pound 9.8 oz

1-27-10
TWO WEEKS OLD!
Today we found out that Elizabeth was going to need to be airlifted to another hospital soon to get her PDA fixed becuase the medication was not working BUT on the bright side, her brain ultrasound is perfect.

Both girls weigh 1 pnd 11 oz today and Riley came off of her UV lights and is now eating 2 cc of milk again.

1-28-10
Riley had her first of many blood transfusions today.
Both girls having blood pressure issues...they hear Riley's murmor again today :/

Elizabeth's sats keep dropping becuase she is moving so much...they want to sedate her but they can't becuase her BP is so low.
Riley, again. is not eating :/