Week Fourteen
 
Sunday, March 2, 2003
 
Weight:      6 lbs. 2 oz. (2781 grams)
Feedings:  56 cc of Breast Milk (24 cal)
 
Bailey had a very quiet day today.  Not much to report.  She didn't take as well to feeding today as she did yesterday.  The first time she kept falling asleep.  The second time she was distracted by her gas.
 
Some blood samples were taken today that showed Bailey has a viral infection.  It isn't affecting her much although it is kind of hard for her to get the oxygen supplied to her by her nasal cannula when she is all stuffed up.  Her nose is suctioned periodically to help clear any blockage.
 
Bailey's cannula was changed to a setup that better resembles the type of setup she will most likely be on when she comes home.  Her oxygen will no longer be controlled by mixing it with room air.  In other words, her oxygen was turned up to 100%.  The oxygen she receives will now be controlled by turning the flow up and down.  If she needs more oxygen the flow will be increased.  If she needs less, the flow will be decreased.  She is currently at 0.5 liters/minute.  All she needs to do is learn how to feed and we can bring her home.
 
 
Monday, March 3, 2003
 
Weight:      6 lbs. 5.5 oz. (2874 grams)
Feedings:  57 cc of Breast Milk (24 cal) + Breast Feeding
 
Bailey had a great day today.  Because she continues to be stuffy, Bailey's cannula was  traded out for a head box (first picture).  The head box is a clear plastic dome that holds oxygen rich air around Bailey's mouth and nose.  This way, if her nose is too plugged up to allow any air to pass through, Bailey can still get the oxygen she needs through her mouth.  When we hold her, we remove the head box and do what is called blow by (second picture).  This means that we hold the oxygen supply tube close to her mouth and nose so that she still get oxygen rich air with every breath.  The oxygen is supplied by the nasal CPAP machine.  It was set at 50% oxygen for most of the day.  An improvement of 10% over the cannula.
 
Bailey did really well with her feedings today.  At lunch she latched on and got quite a bit of milk from mom.  Although it was supposed to be nonnutritive, we suspect that she got a some milk.  When the nurse checked to see how much milk was still in Bailey's stomach an hour after feeding (this is done by attaching a syringe to her feeding tube and pulling on the plunger) she had a 10 cc residual.  This is quite out of character for Bailey.  We all blamed it on the fact that she got more milk than she was supposed to.
 
For her nighttime attempt at breast feeding it was decided to try nutritive feeding.  In other words, once Bailey was done breast feeding, the nurse would estimate how much milk she got and then give her he remaining portion through the feeding tube.  Bailey latched on for 13 minutes on one breast, was burped for three minutes, and then latched on for 13 more minutes on the other.  The lactation specialist working with Stacey and Bailey gave Bailey a latch score of 9 (on a scale of  1 to 10).  Everyone has been really impressed at how well Bailey has taken to breastfeeding.  Bailey will now breast feed three times a day instead of two.
 
We get the impression that some of our new friends (nurses, respiratory therapist, doctors, staff, etc.) at the hospital have started to say their goodbyes.  Everyone keeps telling us that Bailey will be going home soon and that we won't see them anymore.  While we will miss our new friends that have helped us through this time in our lives, we will be excited to have Bailey home.  She should be home within the next two weeks.
 
 
 
Tuesday, March 4, 2003
 
Weight:      6 lbs. 5.5 oz. (2868 grams)
Feedings:  Tube and Breast Feeding (full feeding is 57cc)
BM:           Are no longer weighed, but the number of movements are still counted.
 
Not much to report today.  Bailey did alright with feedings.  Despite the fact that we continually tickled her foot, she fell asleep instead of feeding.  She did a little better with her night feedings than she did with her day feedings.
 
Because breast feeding is harder than bottle feeding, bottle feeding will come after Bailey learns to breast feed.  According to the doctor, as soon as Bailey learns to bottle feed she can come home.  This means that she has to take all of her feedings by bottle or breast and continue to gain weight.  It also means that Bailey's oxygen levels are currently at acceptable levels to send her home.
 
She is looking so much like a real baby now that we are somewhat shocked that "we have a baby."  I'm sure this shock will be even greater when she comes home, but we will be happy to have her home anyway.
 
 
Wednesday, March 5, 2003
 
Weight:      6 lbs. 4 oz. (2831 grams)
Feedings:  Tube and Breast Feeding (full feeding is 57cc)
 
Bailey's hematocrit was low so she was given some blood today.  A normal hematocrit should be about 47.  Her hematocrit was 28.  The increased number of red blood cells that Bailey got with her infusion will help to lower her oxygen needs.  The fact that she still needs infusions is a sign that Bailey night not be as close to coming home as we previously thought. *sigh*
 
Bailey has been loosing weight for the past few days.  This is a bit of a concern and an indication that she might not be getting enough breast milk.  Bailey's breast feeding will be supplemented with larger amounts of milk through her NG (nasal feeding) tube.
 
The nurses took this picture for us this morning.
 
 
 
Thursday, March 6, 2003
 
Weight:      6 lbs. 6.5 oz. (2911 grams)
Feedings:  Tube and Breast Feeding (full feeding is 57cc)
 
Bailey gained some weight today.  This is a good sign and we pray that the it turns into a trend.
 
Bailey left the NICU for the first time today since December 1st of last year.  Her nurse and respiratory therapist took her down to the fourth floor (the NICU is on the fifth floor) to have a catheter study done.  They inserted a urinary catheter into Bailey, colored her urine a distinctive color and tested for reflux of the left ureter.  The results of this test will help the doctor determine the severity of Bailey's hydronephrosis. 
 
Today it was also discovered that Bailey has a hernia.  It is right under her bellybutton and causes her bellybutton to stick out.  The hernia probably developed while Bailey had the umbilical lines in right after birth.
 
Both of these conditions, the hydronephrosis and the hernia, will have to be fixed by surgery some day.  However, these surgeries will wait until Bailey is much older.
 
I know that the website has been lacking pictures lately.  Below are all the pictures that the nurses surprised us with a couple of days ago, but just gave me electronic versions of today.  Some of the pictures are a little blurry, but the are cute just the same.
 
 
 
Friday, March 7, 2003
 
Weight:      6 lbs. 8.5 oz. (2964 grams)
Feedings:  Gavage and Breast Feeding (full feeding is 57cc)
 
Bailey had a bit of a rough day today, but took a big step forward.  Although she wanted to be held constantly or she would get really cranky, Bailey was moved from nursery "A" to bed number 547 in nursery "B."  Nursery "B", although still part of the NICU, is the equivalent of the medium care unit.  This nursery is for babies that are getting ready to go home.  We are excited about the move because it means that Bailey is getting close to going home, but at the same time we are sad because we will miss interacting with all of our friends (nurses, doctors, respiratory therapists, etc.) in nursery "A."
 
Bailey did very well with her feedings today so she will be breast fed 3-4 times a day this weekend in preparation for bottle feeding.  I am excited to give Bailey her first bottle on Monday.
 
Today I discovered why Bailey's feeding tubes are called an OG and an NG tube.  OG stands for Oral Gavage and NG stands for Nasal Gavage.  There is also a G tube that stands for just Gavage that Bailey will hopefully never have.  A g tube is surgically inserted through the belly into the stomach.  Gavage is the term used for force feeding a baby that cannot yet suck or swallow.  I have these terms used quite often, but they never registered until today.
 
 
Saturday, March 8, 2003
 
Weight:      No weight taken
Feedings:  Gavage and Breast Feeding (full feeding is 57cc)
 
The results of Bailey's urinary reflux test came back today.  They showed no reflux.  This means that although Bailey still has hydronephrosis, she is not currently passing any urine from the bladder back into the kidneys.  This means that for the time being she will not develop any infections from her condition.
 
Bailey did very well with all of her breast feeding today.  She will be given her first bottle by me at 7:30 PM on Monday.