Week Sixteen
 
Sunday, March 16, 2003
 
Weight:      7 lbs. 3 oz. (3260 grams)
Feedings:  Gavage feedings (65 cc Breast milk at 24 cal mixed half with formula)
 
Today was a much better day.  Bailey extubated herself at 10:30 AM this morning.  Instead of putting her back on the vent they put her on the nasal CPAP.  This change resulted in smiles and a much happier Bailey.
 
Bailey's past experiences with the nasal CPAP taught us that Bailey hates the CPAP so I don't know how long this change will last.  Hopefully she will progress far enough so that she will be able to move to a cannula, and not back to the vent, when she becomes fed up with the CPAP.
 
Bailey's TCM (the machine that monitors her CO2 level) was disconnected today.  The respiratory therapists have tried several different monitors on Bailey and none have been very accurate.  She will now only be spot checked with the TCM and/or a blood gas.
 
 
 
Monday, March 17, 2003
 
Weight:      7 lbs. 1.5 oz. (3217 grams)
Feedings:  Gavage feedings (65 cc Breast milk at 24 cal mixed half with formula)
 
Bailey was really fussy last night.  Because the nurse suspected she was unhappy due to the nasal CPAP, the doctor was consulted and Bailey was put on nasal cannula at 2:00 AM.  A blood gas was taken at 4:00 AM to make sure the Bailey was doing OK.  The blood gas showed a Ph of 7.338 and a CO2 level of 62.0.  Although the CO2 was high, we were glad to see Bailey's Ph on the low side instead of on the high side.  Her body should figure things out soon and get everything back in balance.  Another blood gas was taken at 5:50 PM that showed a Ph of 7.323 and a CO2 level of 64.0.  We are praying that the CO2 level does not continue to increase.  The TCM was reattached to Bailey's leg due to the increasing CO2 levels.
 
Bailey's 48 hour blood culture results came back negative.  Her antibiotics have been discontinued and her IV was removed.  This meant that we were able to give Bailey a bath in the tub.
 
Bailey has been a much happier baby the past few days.  We are so glad to see her smile more often.  She also has a very intense side.  She loves to sit and stare at things.  Makes us wonder what she is thinking about.  The first picture below shows her staring intently at mom.
 
 
My appointment with the Orthopedic Surgeon went alright this morning.  I am suffering from a Grade 3 shoulder separation.  Of course, this is the worst possible kind, the most painful, and the only type to sometimes need surgery.  I am consulting other doctors and reading on the internet about my injury to decide if surgery is really necessary.  From what I understand, the surgery would be only for cosmetic reasons.  My arm should heal fully without surgery, but I will be left with a deformed shoulder.  We will need to decide soon about surgery.
 
 
Tuesday, March 18, 2003
 
Weight:      No weight taken
Feedings:  Gavage feedings (65 cc 1/4 Breast milk 3/4 formula)
 
Bailey had another good day today.  It feels good to say that after such a bad past few weeks.  She is still on the cannula which is set at a little less than 1 liter per minute providing 60% oxygen.  From time to time she is placed under a head box because of the nasal congestion that a cannula on flows above .25 liters per minute can cause.
 
The ear, nose and throat (ENT) doctor came by to see Bailey today.  She passed with flying colors.  The ENT said that her throat and vocal cords looked great and that there was no need to worry about her airway collapsing.  This was welcome news that has helped to alleviate much of the worry of Bailey returning to the vent.  It felt wonderful to get such good news.  We no longer have to worry about a tracheotomy.
 
Bailey will begin receiving regular baby shots tomorrow (Hepatitis B, Polio, etc.).  She is so used to being stuck all the time that we don't anticipate much crying from our daughter with each shot.
 
 
Wednesday, March 19, 2003
 
Weight:      7 lbs. 2 oz. (3234 grams)
Feedings:  Gavage feedings (65 cc 1/4 Breast milk 3/4 formula)
 
Please remember to pray for those people affected by the war that officially began today.  While my wife and I support President Bush's actions, war can bring a great amount of suffering.
 
Bailey smiled a lot today!
 
Bailey is still on the cannula!  Her settings have not changed at all from yesterday, although she does require slightly higher levels of O2 periodically.
 
Bailey received a shot today for RSV.  She will receive the same shot every month until the end of RSV season.  This shot does not prevent Bailey from getting RSV, but it does make the symptoms much less severe.  We are glad that she qualifies to receive this shot at no cost to us.  The nurse told us that it costs about $1000 an injection.  She woke from sleep when she was stuck, cried for a about 10 seconds as she was getting the shot and then fell right back asleep, waking every minute to whimper slightly so we she could tell us she felt "picked on."  In the coming weeks, she will get the rest of her shots such as polio, hepatitis, tetanus, etc.
 
We gave Bailey a bath today and took some short videos.  I hope you enjoy them.  This is a short video of Bailey yawning (4.3 MB).  She has such cute little lips.  This is an even shorter video of Bailey sneezing (1.3 MB).  This is a video of Bailey in the tub (5.1MB).  And this is a video of mom trying her hardest to rub Bailey's head off (6.2 MB)!  Watch her expressions.
 
 
Thursday, March 20, 2003
 
Weight:      No weight taken
Feedings:  Gavage feedings (65 cc 1/4 Breast milk 3/4 formula)
 
Bailey had another really good today.  She smiled a lot and was content to be held and look around the room.  She was given her first series of vaccinations today.  The shot that she was given was called Prevnar.  This shot includes Haemophilus conjugate vaccine and the Pneumococcal conjugate vaccine.  She will get another shot on Saturday.
 
Bailey's cannula flow is at .75 liters per minute and her oxygen has been at 50% for much of the day.
 
I get to give Bailey her first bottle tonight at 7:30 PM.  Stacey is excited, but I am thrilled..
 
 
Friday, March 21, 2003
 
Weight:      7 lbs. 5 oz. (3311 grams)
Feedings:  Gavage & Bottle feedings (65 cc 1/4 Breast milk 3/4 formula)
Ab. Girth: 37 cm
 
Although I was almost not permitted to give Bailey her first bottle, I gave her a bottle at 7:30 PM today.  Some of the staff wanted Bailey's occupational therapist to give Bailey her bottle to make sure it was done right and that Bailey did not aspirate any milk.  Milk aspiration can sometimes cause babies to have to go back on the ventilator.  The occupational therapist felt comfortable with me giving Bailey her bottle so I did.  It was fun and an experience that I will cherish for a long time.  She did very well and drank 28 cc of her 65 cc feeding from the bottle without any drop in respiratory and heart rate.  She will be given a bottle once a day until Monday at which time her progress will be assessed.
 
Bailey was given a bath tonight and I gave her her first zerbert.  I'm sure every family has their own name for this, but it is when you place your lips on a child's belly and blow to make a raspberry noise.  Bailey didn't laugh, she just sort of squirmed.  I can hardly wait until she laughs at that kind of stuff.
 
Bailey's cannula flow was 1 liter per minutes supplying 50% oxygen for most of the day.
 
 
 
Saturday, March 22, 2003
 
Weight:      No weight taken
Feedings:  Gavage & Bottle feedings (66 cc 1/4 Breast milk 3/4 formula)
 
A capillary blood gas (CBG) was taken today at 10:34 AM.  It showed that Bailey's CO2 levels were on the climb again, but that her Ph level (7.341) was still in check.  Because of Bailey's increasing CO2 level an arterial blood gas (ABG) was taken at 2:35 PM.  This test showed that Bailey's Ph level (7.327) was still acceptable but that her CO2 levels are still on the rise (70.1).  We are a little nervous because this is the same thing that happened the last time Bailey was placed back on the ventilator.
 
When we arrived at 3:30 PM Bailey was on a head box and sleeping contently.  The nurse told us that Bailey's red blood cell count was a little low.  After I reviewed the blood gasses that I mentioned above, I asked if the low red blood cell count had anything to do with Bailey's rising CO2.  She said that they might be related and that the doctor was monitoring Bailey closely so that he could give her blood as soon as she needed it.  I then asked why they were waiting, and she told me that they are waiting to see if Bailey's body would pick up the slack and begin producing red blood cells on its own.
 
Bailey was given another vaccination today.  The one she was given today is called the Pediarix Vaccine.  This shot contains Diphtheria/Tetanus Toxoids, Acellular Pertussis, Recombinant Hepatitis B, and Inactived Poliovirus Vaccine.
 
Stacey gave Bailey her second bottle tonight at 10:30 PM and she drank 55 cc.  It gave us hope to see her do so well with her bottle feeding.  This is a short video of Bailey bottle feeding.
 
Bailey had a lot of trouble sleeping today.  She cried and squirmed from 10:00 PM until midnight as she tried to fall asleep.  The nurse thought that the shot Bailey was given was making her feel uncomfortable and so she gave her some Tylenol at 11:30 PM.  Because Bailey was still awake and unhappy at midnight, she was given some Valium.  She finally fell asleep at about 1:00 AM for a total awake time of 9 hours.  According to Bailey's occupational therapist, this is not healthy.  She needs to have awake periods, but they shouldn't be more than a couple of hours in length.