Week Eight
 
Sunday, January 19, 2003
 
Weight:     3 lbs. 8 oz. (1588 grams)
Feedings:  24 cc of Breast Milk (27 cal)
BM:           Green
 
There isn't much to tell today.  Although she did have another whopper of a diaper. Bailey has been doing so well the past few days!  Her doctor gave her a follow up heart echo to check the fluids in her heart and he said that the heart looked good.  He mentioned that he thought the heart was a little cramped for space in Bailey's tiny chest, but not to worry.  He said that her heart had formed normally and that as soon as she grew a little more the heart would expand to it's full size and shape.  This is a picture of the ultrasound machine used to give Bailey her echocardiogram.
 

Like I have mentioned before.  Bailey loves her pacifier.  The one she loves the most is hollow in the middle.  This means you can either look down the middle and see her little tongue at work, or you can put your finger inside and feel her tongue working.  In the first picture I am holding the pacifier with my finger inside.  It is still very comforting to Bailey to have her arms and legs held close to her body.  In the second picture, I fell asleep while holding Bailey still.  She fell asleep too.

 
 
Monday, January 20, 2003
(Click here to go to Father's thoughts)
 
Weight:     3 lbs. 9 oz. (1620 grams)
Feedings:  24 cc of Breast Milk (27 cal)
BM:           Green
 
Bailey's last line was taken out today.  Bailey has no IV's!
 
One of Bailey's doctors called this morning to give me an update on Bailey.  Once again, when I saw Utah Valley come up on the caller ID my heart sank.  I was glad to hear that the reason for calling was just a routine update.  He told me that Bailey's x-rays still look better than they did a week ago, but that she wasn't progressing very quickly.  He also told me that her x-rays showed chronic lung disease.  This is just a fancy way of saying she has scar tissue in her lungs.  The scar tissue was caused by the ventilators, but this is a small price to pay for her life.  I asked what the long term affects of the lung disease would be and the doctor told me that there is really no way to tell at this point.  The lungs are unique in that they continue to produce new lung tissue for the first few years of a persons' life.  As such, there is a good chance Bailey's body will compensate for the damaged tissue and she will never be affected by the lung disease.  On the other hand, there could be more severe outcomes.  I guess the answers to many of our questions won't come for many years.  We will continue to pray for the best.
 
The doctor did tell me that Bailey would be more susceptible to diseases like RSV and conditions such as asthma.
 
Bailey no longer receives Aldactazide, Sodium Chloride, and Potassium Chloride.  She no longer needs any of these medications.
 
Bailey's oxygen has been at 35% all day today.  The nurses and doctors continue to turn down the oxygen and ventilator pressures.  She has stopped swinging so much and can recover on her own when her oxygen saturation drops.  For a couple of hours in the evening Bailey's oxygen actually stayed at 28%.
 
Bailey is so much more alert now.  She looks at people.  She responds to environmental stimulus. And unfortunately, she is more aware of all the sensors, tubes, and her condition.  She became quite agitated a couple of times today.  As a result she was given Valium twice today.
 
 
Tuesday, January 21, 2003
 
Weight:     3 lbs. 85 oz. (1600 grams)
Feedings:  26 cc of Breast Milk (30 cal)
BM:           Yellow
 
Bailey had a good day today.  According to her respiratory therapist her x-ray looked good.  Her lungs looked clearer and better inflated, but she did have quite a bit of gas in her gut.  Unfortunately, Bailey extubated (pulled her breathing tube out) herself this afternoon at 3:00.  This happened just minutes after mom had left from her afternoon visit.  It's good thing mom wasn't there to experience the extubation.
 
Although no one likes it when babies extubate themselves, it was a god test of how Bailey would fair without the ventilator.  The verdict... she still needs the vent.  This is the second time she has done this.
 
As we were leaving for the night, Bailey's nurse told us that she would probably be moved back to the VIP ventilator sometime during the night.  This was good news because it meant that Bailey was progressing and that we would be able to hold her again.
 
Bailey's poop is yellow again.  This is a good sign that she has worked all the infection out of her body.
 
 
 
Wednesday, January 22, 2003
 
Weight:     3 lbs. 9 oz. (1626 grams)
Feedings:  26 cc of Breast Milk (30 cal)
BM:           Yellow
Ab. Girth: 29 cm
 
Bailey's poop continues to be yellow.  I will not mention her BMs again unless there is a change.
 
Bailey was moved back to a VIP vent today.  As can be seen in the first picture below, the VIP has flexible tubing allowing us to hold our daughter.  There wasn't a VIP Gold available to put her on so she will be moved to one as soon as it becomes available.  The Gold has a few extra options that will help Bailey's lungs.
 
Bailey's CO2 was a little higher today than it has been, and her percentage of O2 needed has also been a little higher than it was on the HFOV.  However, Bailey's pressure settings on the VIP were much lower than they were the first time she was on this vent.  The lower the pressure means that Bailey's lungs are getting strong enough to do more work on their own.
 
The second picture shown below shows how Bailey really likes to sleep with her hands up by her face.  The nurse explained to me that this is how babies comfort themselves.
 
 
 
Thursday, January 23, 2003
 
Weight:     3 lbs. 9.5 oz. (1637 grams)
Feedings:  26 cc of Breast Milk (30 cal)
 
As you can see from the picture below, I got to hold Bailey today.  I love giving her her bink.  She really likes sucking on it.
 
The respiratory therapist tried switching some settings on the VIP today.  He changed the settings so that instead of giving Bailey a set pressure ever time she breaths, it gives here a set volume of air.  This allows her lungs to do a little more work.  Unfortunately, Bailey's CO2 climbed and they had to switch her back.  They hoped that by the end of the day they would have a VIP Gold available that would allow them to give a set volume with pressure support (as combination of the two settings discussed above).
 
Stacey held her today and also gave her her second bath in a tub.  I missed the tub bath because I was painting Bailey's room in our condo (we are trying to get the house already for her to come home).  This is why there are no pictures of the bath.  Mom always forgets tot take the camera to the hospital.
 
When Stacey held her today, Bailey sucked on her finger for the first time.
 
 
 
Friday, January 24, 2003
 
Weight:     ????
Feedings:  26 cc of Breast Milk (30 cal)
Ab. Girth: 29 cm
 
Bailey is now on a VIP Gold ventilator.
 
They weighed Bailey on a different scale today and it showed that she weighed 1735 grams.  No one believed the scale so the nurses said they would resume using the mobile scale tomorrow that they had been using for the past week.
 
Bailey didn't have the greatest day today.  Her chest x-ray didn't look good and they had to go up on her pressure settings.  They also gave her a blood infusion.  Hopefully we will have better news tomorrow.
 
 
Saturday, January 25, 2003
 
Weight:     3 lbs. 9 oz. (1624 grams)
Feedings:  26 cc of Breast Milk (30 cal)
Head:       29.5 cm
 
Bailey had a great day today!  Her pressure settings look good.  Her x-ray looks good. And she has been getting 35% oxygen and only slightly swinging on her saturation.
 
As you can see from the pictures below, I was finally there for a tub bath.  Bailey loved it.  She just sat there as if she were being pampered at her own personal day spa.  She also decided to get rid of some of that gas in her gut.  In other words, she provided a constant little stream of bubbles from her southern end.
 
After her bath I clipped her finger nails for the first time (the third picture below).  I felt bad because I cut her left index fingernail a little too close and she started to bleed. The nurses are not allowed to cut the babies nails for this very reason.  I wouldn't have cut them if it wasn't necessary.  For the past week she has taken up the hobby of scratching her eyes.
 
After cutting her nails, I got to hold her for a long time.  She even sucked on my finger for a little while.