Week Nineteen
Sunday, April 6, 2003
Weight:      8 lbs. 12.5 oz. (3987 grams)
Feedings:  Gavage & Bottle feedings (65-85 cc formula)
Bailey was really cute today and even laughed out loud for the first time.  When she laughed, I was smiling at her and she was smiling back.  Then she started making little giggling noises.  I thought I was going to melt.  It was very special.  I'm glad that I was there to experience that.
Bailey was visited today by her Grandma Strong who is here in Utah helping her Aunt Beth with her new daughter Brooklyn.  Grandma even got to give Bailey a bottle today.
Bailey's cannula was turned down to .5 liters per minute for part of the day delivering  75% oxygen.  At about 7:00 PM that was turned up to .75 liters per minute delivering 75% oxygen because her oxygen saturation began to drop.
I'm not exactly sure what to report in regard to Bailey's feedings.  Bailey's nurse during the day got Bailey's feedings reduced in an attempt to try and keep her from spitting up.  Now she gets 65 cc if it is a three hour feeding, and 85 cc if it is a four hour feeding.  The day nurse also switched her formula back to the old stuff to help her not spit up.  Stacey and I are frustrated with what seems like a not very well thought out plan for getting Bailey to on demand feedings (the last step before going home).  Before we left this evening we spoke with Bailey's night nurse and voiced our concerns.  We feel like instead of tiptoeing around this issue of getting her to on demand feedings that we should simply try it for a few days.  If she looses weight, we can always go back and take the slow approach.  A little weight loss is not going to hurt her and can be easily fixed.  We just feel that Bailey is more or less being force fed leading to spitting up and not drinking "full" feedings with out the need for gavage.  A baby who needs supplemental gavage and that is spitting up can not move to on demand feedings (as per hospital procedures), which brings us right back to the initial problem of force feeding.  It is vicious circle that we feel will never end unless something changes.  As such, we suggested a trial run of on demand to break the cycle.  Hopefully the doctors will feel comfortable trying it.
All of Bailey's feedings were started by bottle today.
This first picture of Bailey is of her with crossed-eyes during her bath this evening.  The second picture is of her trying to get a smile out.  The third picture is my newest favorite because of the cute little grin on her face.  She smiles a lot lately.
Monday, April 7, 2003
Weight:      No weight taken
Feedings:  Gavage & Bottle feedings (65-85 cc formula)
Today Bailey was turned over to her pediatrician.  It is standard procedure to do this so that the doctor that will be taking care of Bailey once she leaves the NICU can become familiar with her history.  In addition, because he is the one that will be giving medical care to Bailey once she leaves, he is also the one that should make the decision about letting her leave the NICU.  He came by the hospital today and looked at her.  Although we were not there to pitch our idea about a trial on demand feeding run, the nurse proposed the for us.  He explained that it sounded good, except that it's Bailey's blood sugar that is important not her weight.  While it is true that it would be OK for her to loose a little weight she can't stand to have her blood sugar drop.  I guess we will have to wait until she decides to feed on her own.
However, Bailey's pediatrician did say that she might go home with gavage feedings.  While we would like to take her home on bottle feedings, we are will be happy to take her home any way we can (as long as she is stable).
All of Bailey's feedings were started by bottle today except for one.  The most she drank from any one bottle was 45 cc.
Bailey's cannula was at .75 liters per minute delivering 60% oxygen for most of the day.
Tuesday, April 8, 2003
Weight:      8 lbs. 12.5 oz. (3987 grams)
Feedings:  Gavage & Bottle feedings (65-85 cc formula)
Bailey didn't gain any weight in the past two days.  While I am OK with this, I hope the doctors don't freak out about it.  I know they are acting in Bailey's best interest, but it would be nice if they could overlook this one thing (unless it becomes a trend).  I think that increasing her feedings or calories is only going to cause her to spit up more.
Bailey drank two complete feedings today.  She averaged 35 cc from all of the other bottles she drank.  This is the best she has ever done.  Maybe she will learn this feeding thing after all and she won't have to come home on gavage.
Bailey's cannula was set at .75 liters per minute delivering 50% oxygen for most of the day.
Wednesday, April 9, 2003
Weight:      No weight taken
Feedings:  Gavage & Bottle feedings (65-85 cc formula)
Bailey is doing better with her feedings.  Also, we have noticed that she tends to eat better at night than she does during the day.  Today she started all of her feedings by bottle taking 65 cc and 57 cc from two of them.  The other feedings were in the in the high twenties to mid thirties.
Bailey's occupational therapist, the one we have been working with trying to teach Bailey to eat, talked to Bailey's pediatrician tonight and proposed two options to help Bailey get out of this feeding rut.  The first option was to put Bailey on a 24 hour minimum feeding volume instead of an every three to four hour minimum feeding volume.  This would help Bailey to realize that she needs to regulate how much she eats from each bottle.  The second option was to take out Bailey's NG tube and try her on demand feedings for a period of 72 - 120 hours.  We are in favor of the second option and hope that Bailey's doctor changes to these orders in the morning.
Unfortunately, Bailey's pediatrician will be gone all weekend.  One of his associates will be taking care of Bailey this weekend.  In other words, I wouldn't expect any big changes over the weekend.  I'm sure that the substitute doctor will be purely in a maintenance mode all weekend.  Again, we hope the orders are changed tomorrow morning before Bailey's real pediatrician leaves.
On a more exciting note, Bailey's pediatrician did say that it looks like Bailey will go home next week.  We aren't getting our hopes up, but the is the first time any doctors have talked to us about Bailey going home and used the term "next week." Yeah!!!
Bailey's cannula was set at .75 liters per minute delivering 50% oxygen for most of the day.
Thursday, April 10, 2003
Weight:      8 lbs. 14 oz. (4031 grams)
Feedings:  On demand bottle feedings of 24 cal formula
Good news!  For the first time in Bailey's life she is without a tube down her throat.  Bailey's NG tube was taken out today and she is now on a 72 hour trial run of on demand feeding.  For the next 72 hours she will not receive any gavaged feedings.  This also means that she has to swallow her medications.  If she can do this for 72 hours, then all we have to do is room in with Bailey at the hospital and they will send her home (if all goes well).  If she doesn't handle this well, then her NG tube will be put back and she will stay in the hospital until she can go without the gavage.  At this point I am really hopeful that she will be home in the first half of next week.
Bailey took seven bottles today.  She drank 45 cc, 60 cc, and 85 cc from three of her bottles and averaged 30 cc from the other 4.  Bailey was in a great mood today and wanted to play all the time.  I think she was in a good mood today because she is no longer being force fed.
Grandma Strong got to help with Bailey's bath tonight and then rocked her to sleep.  During Bailey's bath we noticed that Bailey's hernia is all but gone.  The first picture below shows her belly button that no longer protrudes from her stomach.  In this picture, you can also see how round Bailey's stomach is.  The second picture is of our beautiful sleeping baby girl with one less tube on her face.
Bailey's cannula was set at .75 liters per minute delivering 50% oxygen for most of the day.
Friday, April 11, 2003
Weight:      No weight taken
Feedings:  On demand bottle feedings of 24 cal formula
Bailey had a good day today.  Bailey took seven bottles between the hours of 8:00 AM and 11:30 PM.  The amount she drank from each were 40 cc, 50 cc, 55 cc, 55 cc, 58 cc, 35 cc, and 59 cc.  As can be seen from these amounts, Bailey took her feedings much better today than she has in past.  Although she is not yet efficient at eating (feedings can take up to an hour), she is consuming almost all of her daily required formula volume.  Today she drank 94% of the target amount of 520 cc.
Bailey's cannula has been at .75 liters per minute delivering 36% oxygen.
Saturday, April 12, 2003
Weight:      8 lbs. 15.5 oz. (4067 grams)
Feedings:  On demand bottle feedings of 24 cal formula
BAILEY MIGHT COME HOME NEXT WEEK!!!  If everything goes well, Bailey's doctor will get back on Monday and tell us that she can come home on Wednesday or Thursday.  Regardless of what happens, it sure feels good to talk about Bailey coming home in the context of days.  It seems like for so long we talked about her coming home in the context of months.  Then we spent a long time talking about her coming home in the context of weeks.  It feels great to now talk about her coming home in the context of days.
Bailey had another good day today.  She drank all her feedings form bottles again and is handling her oral medicines well.  She doesn't care for the taste of her vitamins (which is unfortunate because the stain her clothes horribly) but she does get them down.  She didn't do as well with feedings today as she did yesterday.  She only drank 85% of her required daily volume.
I feel like I need to point out that Bailey has been doing much better with her oxygen needs the past few days.  Lately I have been focusing on Bailey's progress with feeding, but she has been making great progress with her oxygen needs too.  Bailey's oxygen needs have dropped down to the 40% level.  We hope that her flow will soon be lowered to .5 liters per minute and that her oxygen needs will continue to drop.  Bailey's cannula was at .75 liters per minute delivering 40% oxygen.
The first three pictures below are of Bailey smiling in her bouncy chair.  the second two pictures were taken while I was asleep holding my sleeping daughter.