Gaining Weight

Just a quick note Harley now weighs 10 lbs. Here are some pics from the last week.

9 LBS OF GIRL

We had our first doctor's App with DR. Stuckelburg in Syracuse. Harley now weighs 9lbs and is taking 4 oz of milk almost every feeding. She has been a very good little girl. She has gotten to meet most of her neighbors and even Little neighbor girl Megan. More later...

HOME SWEET HOME!!!!

What a crazy 48hrs. Where do I start. We learned that Harley would not have to come home on oxygen or a monitor Wednesday but still had one more test to do. Well that test was a car seat test, in which they place the infant in their car seat and monitor there oxygen saturation levels. Miss Harley's levels fell below the allowable level. Probably because of a couple of different reasons 1 She still has a little Pulmonary VSD (hole between ventricles in heart) and 2 She is not strong enough yet to expand her chest when in a compact position(car seat).

So we had to run up yesterday with no warning to take a class on how to care for someone with oxygen and monitors. We then had to stay the night last night in her room so that we could get used to the equipment with someone around. Happy to say that she did not alarm at all through the entire night.(alarm means low heart rate or high heart rate or low respiratory rate)

Harley got released from the hospital a little before noon. Emily and I kind of had to laugh it felt kind of like we were steeling her from her adopted family. (NICU DOCTORS AND NURSES) After reading some of the success story's that have come out of the NICU over the years it makes you realize how lucky we are to have this wonderful hospital in our back yard just in case.

Although Harley was not premature and no where near the health problems that most
babies have when they come through their doors. Harley's 19 Day visit was enough to consider all the Nurses and Doctors our extended FAMILY!!! We are forever in you debt. THE LUBBENS EMILY, DAVE, and HARLEY :-)

I CAN HEAR YOU

Today we passed our hearing exam. Tomorrow we are scheduled for another echo exam to see if the heart is progressing. After that I can't tell you when we will get to come home but I think it is getting close. Thanks to cousin ANGIE for the nice headband.

NO OXYGEN

Today we showed up at the NICU and were amazed to see that the night nurse had removed her oxygen tube, and her line going into her umbilical cord. We gave her a bath today. She is now able to drink 59cc at a time. We are now just waiting to see if she can maintain her oxygen levels through the next couple of days. Here are some pics of her bath today.

BIG GIRLS BED

Today Harley moved into a crib. She is now getting 45 cc of milk every 3 hours. She seems to spit up more in the morning feedings more. They lowered her vapor therm to 1 ml which is basically no pressure at all and continues to be on room air of 21%. All the doctors are really impressed with the progress she has made the last few days. We hoped to have her home by mothers day, but does not look like that will happen. The doctors seem very confident that she will be home by Emily's birthday (May 20th).

GOOD DAY

Good afternoon from the NICU. Today is a good day, it may have rained last night keeping us out of the field but it also kept me here most of the day. Harley had another ecogram done today. The medicine that she has been receiving the last 72 hours has helped her heart in its ability to strengthen. Her feedings have been increased to 26cc every 3 hours and this morning she took 30cc. Her IV got taken out of her head this morning also. Things are looking up but trying to stay grounded. Here are some pics of grandma Sherman holding Harley and Mom feeding. Later The Lubbens.

ATTITUDE

Yesterday was a pretty uneventfully day in the NICU, except for the fact that Harley ripped her IV out of her hand. (she has her moms attitude!!!) So they had to put it in her head. She continues to get stronger every day. We are now treating some heart problems. Her heart beats fine. But she is lacking some muscle on the bottom side of both ventricle's that prevents her from expelling all of the blood pooled in the heart. That would explain her not being able to keep her oxygen levels up. We are treating it now with medicine and just found out that the left side has gotten better in the last 24 hrs. That's all I know now. Lube

BATH TIME

We gave Harley her second bath "sponge bath". Today she pooped again and was able to drink milk out of a bottle somewhat, all very big hurdles for her at this time. She is still on the nasal drip candle of oxygen, still having some problems maintaining her oxygen levels. May be a little slow with updates the next week as my laptop crashed while in the hospital. Until later THE LUBBENS

POOP IS GOOD

Harley is now off of the C-Pap and on a Low flow oxygen. She pooped for the first time this morning. Today she will get milk every three hours and we will give her a bath at 5:00. We talked to her doctor this morning. She gave us a explanation of what they think might have caused the whole problem. Something happened 12 to 24 hours before she was born. A wrapped cord or was laying on the cord or something that caused a decreased flow of oxygen. This stressed her to the point that caused the liver and the lungs to be stressed.

Emily will go home tonight. Harley will have to wait till we see some more signs of improvement. (guessing a week) I would ask anyone that wants to come over to the house and visit to please call first. 848-2241 Thanks Dave Emily Harley

Latest News

Today was a little slower, not much improvement today. After spending some time early this morning without any oxygen they decided to put the C pap back on at 9:00am, because she was not keeping her lungs as full as they would have liked. We just weighed her and she weighs 7 lbs 6oz just what they wanted her to weigh due to the fact that she was retaining fluid yesterday. More tomorrow