Week Eleven
 
Sunday, February 9, 2003
 
Weight:      5 lbs. (2267 grams)
Feedings:  37 cc of Breast Milk (30 cal)
Head:        32 cm
 
Bailey now weighs in at five pounds!  She is getting to be one of the bigger kids in the NICU.  We hope that she will make some rapid progress soon.  She has been showing us her age by crying and fussing a lot more.  She tends to get bored staring at the ceiling and lying on her back all day.  The nurses put her in the bouncy chair today and she loved sitting up.  She fell asleep in her chair and stayed there for three hours.  We weren't there, so we don't have any pictures.  Maybe we'll get some pictures tomorrow.
 
The ophthalmologist didn't come tonight.  I guess we were confused because he said that he was going to come back on Monday to check on her, not Sunday.  We should know more tomorrow.
 
The little girl two beds down from Bailey died last night.  We are grateful that Bailey is still with us.
 
Monday, February 10, 2003
 
Weight:      4 lbs. 14.5 oz. (2229 grams)
Feedings:  39 cc of Breast Milk (30 cal)
 
Bailey extubated herself again today at 7:00 AM.  She was once again put on nasal CPAP.  She lasted three times longer this time.  She was able to stay on nasal CPAP for 30 minutes instead of just 10.  She went back on the vent without any change in her settings.
 
Bailey's respiratory therapist started giving her inhalation aerosols today.  She is receiving a combination of two inhalants.  The first is called Combivent.  Combivent is a bronchial dilator aimed at helping to open up her airways and help her process more oxygen.  Combivent is a combination of ipratropium bromide and albuterol sulfate.  Both of these drugs are given to full grown children and adults to treat asthma.  The second inhalant is called Flovent.  She is receiving Flovent to help with the inflammation of her airways.  Flovent is a steroid called fluticasone propianate.  Both the Combivent and the Flovent are supposed to help her wean more quickly from the ventilator.  It will take a few days to see any results.
 
Bailey's hematocrit was 24 today.  It should be about 40.  To fix this, she was given blood.  This meant that Bailey had to have an IV put in her for the first time in weeks.
 
Bailey's ophthalmologist still hasn't made an appearance.  We started to get nervous that she may have been overlooked.  I even had the NICU page him to make sure she hadn't been forgotten, but he didn't return his page.  If he doesn't come by first thing tomorrow I think I'm going to go crazy!
 
Bailey was given another tub bath tonight.  She really likes to hold onto a cotton ball while we bath her.  You can see a short video clip by clicking here.  Also, when Stacey was holding here after here bath something happened.  As you can see in the first picture below there is something on Stacey's shirt right under Bailey's bum.  As can be seen in the second picture, Bailey tinkled on Stacey.  I thought it was very funny.
 
 
 
Tuesday, February 11, 2003
 
Weight:      No weight taken
Feedings:  IV feeding and lipids
 
Bailey extubated herself again this morning at about 3:30 AM.  This is becoming an every day occurrence and doesn't worry us as much as it used to.  The people in the NICU respond very quickly to the extubation alarm on the vent.
 
Bailey's ophthalmologist finally came by today at about 1:00 in the afternoon.  Stacey happened to be there visiting on her lunch break when she go the news that Bailey would need surgery within a matter of hours.  Bailey's eyes had progressed to stage 3+ with her left eye being the worse of the two.  She called me at home and I rushed right over to the hospital.
 
At 1:45 PM, Bailey moved from bed 526 in the NICU to the West Procedure Room #519 (the first picture) where she will reside for a few days.  Bailey's eyes were dilated and she was started on a morphine drip, given a double dose of Pavulan, and a single dose of Fentanyl to get her ready for surgery.  The Pavulan cripples all the skeletal muscles so that Bailey is more or less paralyzed.  The other two drugs are to help with the pain.  This surgery is very painful.  By the time it is completed each of Bailey's eyes will have been burned close to 3000 times with a tiny laser.  Bailey was given another blessing at 3:00 PM while mom was holding (second picture) and then she was put in her bed to await surgery (third picture).  Surgery began at 3:15 PM with dad assisting.  Basically I squirted Bailey's eye with saline whenever the doctor told me to.
 
Despite the fact that Bailey was given two more double doses of Pavulan and two more doses of Fentanyl during surgery, she continued to initiate her own breaths.  The respiratory therapist kept telling us that the Pavulan should be inhibiting her from initiating any breaths, but that she didn't seam to want to relinquish control to the vent.  This is just another example of how much stronger she is than we give her credit for.
 
Surgery went very well.  The side effects of surgery are a loss of about 30 degrees of vision on each side of the head and an 80% chance of being nearsighted. The doctor said that the surgery went excellent.  Bailey also handled it very well.  Her oxygen needs were the lowest ever (27%) throughout the entire surgery.
 
The goal now is to help her sleep for the next three days so that she will experience as little discomfort as possible.  This means no holding, limited touching, and IV feedings.  Her IV feedings will be fortified with infusions of lipids (fats).  Not holding her will be hard since she was just starting to interact more with her surroundings, but we look forward to her recovery and good vision (and the annihilation of the threat of blindness).  The doctor will be back in a week to check up on her.
 
 
 
Wednesday, February 12, 2003
 
Weight:      No weight taken
Feedings:  IV feeding and lipids
 
It is strange to see her with so many IV's again.  She has one in each hand and the PIC line in her left foot.  The PIC goes in her ankle, up her leg and up to her heart.  I'm glad they will all come out as soon she has fully recovered from surgery.
 
Bailey is recovering remarkably well from surgery.  She is being kept heavily sedated so that she will experience as little pain as possible.  Regardless of her heavy medication, she still opens her eyes a tiny bit and looks for mom and dad when she hears our voices.  Her oxygen needs have stayed right around 30% with her saturation at a steady 96%.  Her CO2 also looks better than ever, and her breath rate was weaned to 18 BPM.
 
We can hardly wait until she is well enough to hold again.  They haven't even moved her to weigh her for the past two days.  The only forced movement she receives is an occasional adjustment to her heads position so that it stays round (although she favors looking toward her right shoulder).  Her heads is still fairly soft.
 
 
Thursday,  February 13, 2003
 
Weight:      5 lbs. 5 oz. (2415 grams)
Feedings:  IV feeding and lipids
 
Bailey is doing very well!  This morning, her set breath rate was weaned to 5 BPM.  The vent was switched from pressure support to volume support (a mode that only mature lungs can handle).  Volume support ensures that Bailey gets a specific volume of air instead of a specific pressure of air with each breath.  By mid day they turned her back up to 10 BPM.  When we left the hospital it was 0 BPM.  Zero BPM means that she is initiating every breath that she takes.  It also means that she is getting no help from the vent except for pressure support.  Pressure support gives her a positive pressure of air with each breath to make breathing easier.  Her pressure support is currently at 13.  Once this number is lowered, Bailey will be able to handle a nasal CPAP.  Her respiratory therapist said that this could happen as early as next week.  This was very exciting to myself and to Stacey.
 
Bailey's nurse gave her a cotton ball bath this morning because she had a bit of an leaky diaper.  Also, both IV's were removed form each arm and a new one was started in her head.
 
Bailey was awake for about 20 minutes tonight.  It was fun to see her alert again, but we wanted her to go back to sleep to save her energy.  While she was awake, I got to pick her up to weigh her (this brought back memories of when she was really tiny and we would have to do the same thing).  After weighing her, the nurse gave her some Versed and she went back to sleep.
 
Bailey's progress since the surgery ahs been very promising!  She is getting so big.
 
 
Friday, February 14, 2003
 
Weight:      No weight taken
Feedings:  IV feeding and lipids + 6 cc of Breast Milk (20 cal)
 
Bailey continued to make a good recovery today.  She is still receiving the same amount of Morphine (0.8 ml/hour) that she has been receiving since surgery.  This helps her to stay sleepy and not feel any pain.
 
Her CPAP was lowered from 8 to 7 today, and her breath rate was lowered to 6 BPM.  Bailey's pressure support stayed at 13.  The respiratory therapist told us that when her CPAP hits 6 and her pressure support hits 11 that they will try her on nasal CPAP.  We hope that all goes well and that she continues to progress.
 
Bailey started receiving a small amount of breast milk today along with her IV feeding.
 
 
 
Saturday, February 15, 2003
 
Weight:      5 lbs. (2261 grams)
Feedings:  IV feeding and lipids + 9 cc of Breast Milk (20 cal)
 
Bailey's breath rate was turned all the way down to 0 BPM again last night.  She did very well, but her CO2's started to climb and they had to turn her breath rate back up.  At about noon, her CPAP was turned down to 6 and her pressure support was lowered to 12.  Her feeding was increased to 9 cc and will be steadily increased until she gets back to the amount of fortified milk she was receiving before surgery.
 
Stacey got to hold her today in the early afternoon for the first time since surgery (the picture below).  I held her later that night.
 
As we were leaving the hospital Bailey's breath rate was turned down to 0 BPM again and the respiratory therapist setup a nasal CPAP machine for her just incase she extubated or they decided to put Bailey on it.  Our spirits were high as we left.  We hope she will be on nasal CPAP soon.  This would bring her one step closer to coming home.