Week Seven
Sunday, January 12, 2003
Weight:     3 lbs. 4 oz. (1470 grams)
Feedings: 30 cc of Breast Milk (24 cal)
Head:       28.5 cm
BM:          Green
Bailey had a horrible day today.
We visited with Bailey a number of times today.  During our first visit I held Bailey.  While I was holding her we were told that Bailey would receive deep tracheal suction within an hour.  This is where they remove her breathing tube so that they can do a deep suction of her lungs.  Bailey's chest x-rays showed that her lungs were not well inflated and the respiratory therapist hoped that this procedure would help fix the problem.  This wasn't the first time Bailey has needed this procedure so we weren't too concerned.  In fact I was excited.  I was excited that they would be doing something to help Bailey with her oxygen needs, and that I would get to see her with no tape on her face.
I held her for about 45 minutes when the nurse took her from me to get her ready for the procedure.  She was given some morphine to help with the discomfort of having a new tube placed in her throat.  A few minutes later they began the procedure.  I took a few pictures.  The first picture shows the new tube being inserted in Bailey's throat, and the second shows her cute little face without any tape.
They didn't get as many secretions from her lungs as they would have liked, but the procedure went smoothly.  Unfortunately, Bailey spent the next two hours at 100% pure oxygen and only 84% saturation.  When her saturation got a little better and her oxygen needs dropped, Stacey and I went home for dinner.
When we got back to the hospital Stacey held Bailey.  She did a little better, but you could tell that Bailey was still struggling.  The partial pressure of CO2 in her blood was a little too high for comfort.  Everyone kept a close eye on her to make sure that she would be OK.  At about 11:00 pm Stacey and I went home.  At 11:30 pm the phone rang.  When I saw Utah Valley Medical come up on the caller ID my heart sank.  Bailey's nurse was calling us to let us know that the doctor had just made rounds on Bailey.  They decided to go up on her ventilator settings (this increases that risk of lung disease) to help bring her CO2 down.  She also told us that if this didn't help they would move Bailey back to the High Frequency Oscillatory Ventilator (HFOV) that she was on when she was first born.
Stacey called her brother who met me at the hospital to give Bailey a blessing.  After the blessing (that stated she would live a long life), I visited with her briefly, gave her a kiss good night, and left.  Before I left I asked the nurse to call us any time of the night if her condition changed.  I wish I could have stayed the night with Bailey.
Monday, January 13, 2003
(Click here to go to Father's thoughts)
Weight:     3 lbs. 4.5 oz. (1492 grams)
Feedings: 30 cc of Breast Milk (24 cal)
BM:          2 large green
Length:    14 inches
The phone rang at 7:30 am this morning.  Bailey's nurse was calling to inform us that she had just been placed back on the HFOV.
The phone rang again at 11:50 am.  It was one of Bailey's doctors.  He explained to me that when comparing x-rays, Bailey's lungs looked better inflated on the HFOV than they did on the VIP Gold.  However, he also said that Bailey's oxygen needs are still very high.  They will continue to watch her closely and there is a chance that will need to run some tests for diseases like cystic fibrosis.  They are also concerned that her lungs might be a little small for her body.  He said that this had been a concern since she was born, but this was the first time I had heard anything about it.
I spent the afternoon with Bailey and her mom and I spent the evening with her.  She has been much more stable on the HFOV and her oxygen needs have really dropped.  In addition, the partial pressure of CO2 in Bailey's blood has also dropped.  In a nutshell she is doing much better, even though the move to the HFOV is a step backwards.  She seemed to be happier and she even smiled several times in her sleep.
As a side note.  I measured Bailey today and she is 14 inches long!  She is really growing.  Some of those clothes we bought and that were given as gifts might actually fit her soon.
This is a picture of Bailey back in her open air bed.  There is also a picture of her HFOV.  Because of the stiff tubing used on the HFOV we will not be able to hold Bailey until she is taken off of the HFOV.
Tuesday, January 14, 2003
Weight:     ????
Feedings: 24 cc of Breast Milk (27 cal)
BM:          Yellow-green
The scale wasn't working right today.  It said that she weighed 1704 grams.  No one believed that this was right, but it had to be recorded anyway.  Hopefully they will fix the scale soon.  Another follow up ultrasound of Bailey's kidneys showed no change in either kidney.
Bailey had another rough day today.  They performed many tests on Bailey today.  Most of the tests were performed not because the doctor is concerned that Bailey might have one of the diseases, but more as a precaution and to rule them out entirely.  They performed an EKG that everyone said looked good, but was sent to Primary Children's Hospital in Salt Lake City for the official word.  I'm not sure when we will hear back on this test.  Bailey was also given a test for cystic fibrosis.  It will be two weeks before we hear back on this.  A third test called an alpha 1-antitrypson test was also performed.  This test checks to see if Bailey's body is producing certain needed enzymes.  An echo of her chest and stomach was also done.  The echo showed that her stomach was in good order, but that her heart had a lot of excess fluid.
To help with the fluids Bailey was given two diuretics.  One is called Lasix and the other is called Aldactazide.  Lasix helps the body to get rid of excess fluids that accumulates in between the cells in the body.  Aldactazide will help to remove the excess fluid from Bailey's heart.  In addition, Bailey's feedings were changed to 24 cc of breast milk at 27 cal.  This basically means that she will be get less volume per feeding but with the same calorie content.
Wednesday, January 15, 2003
Weight:     3 lbs. 1 oz. (1394 grams)
Feedings: 24 cc of Breast Milk (27 cal)
Ab. Girth: 27 cm
BM:          Green
Bailey's x-rays looked really bad today.  The nurses and doctors hoped to see more improvement by now, but they look about the same.  To try and remedy this, Bailey was given another deep tracheal suction.  This didn't help.
Today the nurse also noticed that Bailey's heart rate was up around 200 (it is normally between 140 and 170).  To help calm her down she was given Valium.  The Valium didn't help so Bailey was switched back to Versed which must be given through an IV.
The Ophthalmologist came in at about 9:00 pm and look at Bailey's eyes.  He said that while they are still immature, they look good so far.  He said he would be back regularly to check on her eye development.  It sure was nice to get some good news for a change.
We gave Bailey a cotton ball bath and changed her linens.  We but special linens on her bed that her Grandma Strong made just for her.
Thursday, January 16, 2003
Weight:     3 lbs. 5 oz. (1495 grams)
Feedings: 24 cc of Breast Milk (27 cal)
BM:          Green
The scale is working again.
I'm happy to say that Bailey had a much better day today.  She seemed happier and much more active than normal.  In fact, today was the first time I really felt like Bailey would react to me when I spoke to her.  In the past she would look the general direction of my voice (sometimes) but today she would follow my voice as it moved around her, and she would look right at me.  I was so excited I made two videos.  Video 1 can be seen by clicking here.  Video 2 can be seen by clicking here.  Once again, if these links don't work, right click on the link, select save target as, save it to your computer and then open it form your computer.
While we visited with Bailey today she had her biggest BM ever.  She hadn't pooped in a while so the nurse gave her a suppository.  At about 4:00 pm today it worked.  Bailey's diapers usually weigh about 15 grams when full.  This diaper weighed 48 grams!!!  I know it sounds kind of silly, but this is good news.  Her intestines have been looking really full on her echoes and x-rays the past few days.
They started giving Bailey Potassium Chloride today with each feeding to help bring her natural potassium levels up.
Friday, January 17, 2003
Weight:     3 lbs. 7 oz. (1560 grams)
Feedings: 24 cc of Breast Milk (27 cal)
BM:          Green
Ab. Girth: 27.5 cm
Bailey had a good day today.  Her chest x-ray looked good today.  Her lungs looked much better inflated than they have in a long time.  Her oxygen needs have been around 44% and her saturation has been more stable (although she still swings) at 95%.
The Meropenem was discontinued today so Bailey is no longer receiving any antibiotics.  She is currently infection free and completely over her pneumonia.  As soon as they switch her back to Valium (instead of Versed) she will finally be line free.
Bailey's new favorite thing to do is suck on her bink.  Because of her breathing tube she needs a little help keeping it in her mouth, but she loves to suck on it if we hold it there for her.  I know it may seem like a small step, but it makes us feel good to see her do normal baby things.
Saturday, January 18, 2003
Weight:     3 lbs. 8 oz. (1585 grams)
Feedings:  24 cc of Breast Milk (27 cal)
Head:       28.5 cm
BM:           Green
Ab. Girth: 26.5 cm
Bailey had a good day today.  Although she was still on the HFOV, Stacey was able to hold her... kind of.  The respiratory therapist allowed Stacey to sit up close to the bed, and hold Bailey in her arms.  See the picture below.
Bailey had another whopper of a diaper today.  It weighed 41 grams!  We could tell that Bailey felt much better all day long.  She spent most of the day sucking on her binky.