Week Twelve
Sunday, February 16, 2003
(Click here to go to Father's thoughts)
Weight:     4 lbs. 14.5 oz. (2230 grams)
Feedings:  36 cc of Breast Milk (20 cal) and lipids
Head:        32 cm
Bailey is off the ventilator!  She was put on nasal CPAP (first picture) at 10:30 this morning and has been doing well ever since.  Her oxygen needs were at 27% for a saturation of 98% until about 4:00 PM then they climbed to 40% for a saturation of 93%.  The general consensus as to why her oxygen needs increased was due to the fact that she was more awake and more active in the evening than she was during the day.  Her Morphine has been lowered to 0.6 ml/hour.  As a result she is more aware of her surroundings and able to stay awake for longer periods of time.  Regardless of her oxygen needs, Bailey will stay on nasal CPAP as long as the partial pressure of CO2 in her blood stay in check and her saturation stays above 87%.  Currently these numbers look better than they ever have.  Her CO2 is 49 and her saturation stay 94%.  Her CO2 needs to stay below 65.
It is fun to hear Bailey grunt and make noise when she moves.  At first we kept asking the nurse what was wrong with her.  We wanted to know why she kept making noise.  Then it dawned on us that all babies make noises when they move.  We are just too used to Bailey not being able to make any noise.  It is strange to say it, but I love to hear her cry.  And cry she does!  She already throws little tantrums when we put her down in bed.  She really likes to be held.  The NICU might be creating a monster that will only sleep if she is held (or sedated).
Because the nasal CPAP pushes air down Bailey's throat and not directly into the lungs, Bailey swallows a lot of air.  To help her fix this problem, the nurses keep her OG tube (the one that goes down her throat and into her tummy that they use for feedings) open so that Bailey can get rid of air by burping through the tube.  She burps a lot!
Bailey's nasal CPAP pressure is set to 6.  This the same as the CPAP on the vent.  There are two ways to attach the nasal CPAP to Bailey.  The second picture below shows a mask that fits over Bailey's nose.  The third picture shows a small two prong attachment that slips inside of Bailey's nose.  Both are a uncomfortable and the respiratory therapist will switch back and forth between the two so that she doesn't develop any pressure sores.  The last two pictures are to show you how cute Bailey is.  The white stuff on the right side of her upper lip is some adhesive left over form the tape that help her vent tube in.  It should be gone in a couple of days.
We are trying not to get too excited, but we were told as we were leaving that Bailey would be tried on a simple nasal cannula tomorrow.  A nasal cannula does nothing but provide Bailey with a higher concentration of oxygen than is found in room air (room air is 21% oxygen).  This would mean that all she has to do is learn to feed and she could come home (and her parents need to get on the ball and take the required infant CPR class).  Our spirits are high and we are very excited.
Monday, February 17, 2003
Weight:     5 lbs. (2269 grams)
Feedings:  36 cc of Breast Milk (30 cal) + Dextrose
Ab. Girth: 29 cm
Bailey no longer resides in her private room.  She is now at bed 530 in the NICU.
Bailey was taken off of nasal CPAP this morning at 11:00 AM and was placed on a nasal cannula!  She has done very well all day with this change and we are very excited.  We can finally see her face (all at once).  We can finally pick her up and move her without the help of a nurse and a respiratory therapist.  We can finally standup, sit down and reposition her while we are holding her without the risk of pulling her breathing tub out.  It is a welcome change.
There is only one setting on the nasal cannula machine (first picture).  This setting controls the mixture of oxygen (green tube) and air (yellow tube) that Bailey receives (clear tube).  The mixed air is passed through saline (clear container) to give it some humidity before it reaches Bailey.  Bailey's oxygen needs have stayed right around 40% all day and her respiratory rate has stayed around 40 breaths per minute.  Her breath rate should stay between 40 and 60 in order for her to stay on nasal cannula.
The second picture below shows Bailey a little while after being placed on a cannula.  She was glad to get rid of the nasal CPAP and sleeps much better now.  She likes being able to move her head freely for the first time since birth.  The third picture is of mom holding Bailey later in the evening.  She loves being held, and loves to keep her hands up by her face.
If you haven't noticed from her pictures, Bailey has no tubes in her mouth.  Her oral feeding tube (called an OG tube) has been moved to her nose (called an NG tube).  Her Morphine was also lowered to 0.5 ml/hour.
Assuming that Bailey stays on a cannula, the only hurdle left for her to come home is to learn how to feed.  This takes some babies days to learn and others take months.  They will try to get her to feed through her mouth in 2-3 days.  We will have a better idea of how quickly she will take to this once we have tried it a few times.  It sure would be nice for me to have a job right now so that we would know where we will be for the next few years.  It would make us feel better prepared to have our daughter home.
Tuesday, February 18, 2003
Weight:     5 lbs. 2.5 oz. (2335 grams)
Feedings:  36 cc of Breast Milk (30 cal) + Dextrose
Bailey had an eventful day and suffered a setback.  At 7:30 AM Bailey got really upset.  As a result her breathing slowed and her heart rate dropped.  In other words she was suffering from apnea.  Her color changed.  The nurse described her as being dusky.  The nurse explained to me that this meant she was turning grey.  Bailey's CO2 also started to rise above the safe point.  The episode lasted long enough that the respiratory therapist ran to get a tracheotomy (breathing) tube so that she could be reintubated and put back on the ventilator.  Just  as they were about to intubate, Bailey finally took a breath.  As a result, her heart rate increased and her color returned.  Unfortunately, her CO2 did not drop back into the safe range.  To combat this, Bailey was put back on nasal CPAP.
Bailey's nasal CPAP settings were set to a flow of 7.5 l/min with 40% oxygen.  This resulted in a constant pressure of 5 cm of water.  Bailey's oxygen was lowered later in the evening to 30%.  We will try the cannula again in a few days.
Bailey's Morphine was lowered to 0.3 ml/hour.
Wednesday, February 19, 2003
Weight:      5 lbs. 2.5 oz. (2340 grams)
Feedings:  36 cc of Breast Milk (30 cal) + Dextrose
There wasn't much of a change today.  I hope this isn't a sign that Bailey is going to get comfortable on the nasal CPAP.  For so long it seamed like Bailey got comfortable on her vent and had no intentions of getting off.  We, as parents, are tired of the trips to the hospital.  We just want to bring her home.  To have our family at home... together.
Bailey's Morphine was weaned to 0.2 ml/hour.  She is getting 40% oxygen with a saturation of 93%, CO2 of 55, and a respiratory rate of 50.
Thursday, February 20, 2003
Weight:      5 lbs. 3 oz. (2360 grams)
Feedings:  36 cc of Breast Milk (30 cal) + Dextrose
Not much change in Bailey today.  Her Morphine was stopped which means the nurses will take her PIC line out tomorrow and she will once again be line free.
The respiratory therapist tried to but Bailey back on a cannula today but it didn't go well.  Bailey was really congested so none of the oxygen from the cannula could get through her nose.  The doctor was worried that she might have RSV, so they did some labs.  Fortunately, they came back negative.  Bailey has a simple cold.
The ophthalmologist came by today to do a checkup on Bailey's eyes.  Although Bailey was not impressed to have someone pock around at her still sore eyes, the doctor was really impressed with how well she has recovered.
You can see a little video how active Bailey is when she is awake by clicking here.  Sometimes we call Bailey our little rhinoceros because the Nasal CPAP goes back over her head the way a horn would on a rhino.
Friday, February 21, 2003
Weight:      5 lbs. 5 oz. (2402 grams)
Feedings:  46 cc of Breast Milk (27 cal) + Dextrose
Bailey had a rough night last night and rough day today.  She has been getting Reglan and Prevacid for quite some time to help her with reflux.  Reflux is a condition where there is too much acid in the stomach.  When this occurs, the extra acid will come up and burn the throat.  Unfortunately, despite the drugs she has been receiving, Bailey had a really hard time sleeping last night and all day today because of reflux.
Bailey had been given Valium, Versed, and a dose of Morphine to try and get her to calm down when the doctor ordered her Morphine drip started again at 0.3 ml/hour.  There were two reasons for starting the drip.  One reason was to help Bailey with her eyes.  When the ophthalmologist visited yesterday, he mentioned that Bailey's eyes still looked very sore.  The doctor thought she might have been disconnected from the drip a little early.  The second reason was to help her deal with her reflux.
The nurse put Bailey in a swing today (her first time in a swing) and noticed that Bailey was able to sleep better in the swing than she had slept all day.  She stayed in the swing for 3 hours.  The nurse thought that because she was sitting up the reflux wasn't bothering her as much.  When Bailey was placed back in bed, she was put in a "C" pillow so that she could remain in a slightly inclined position while sleeping (the picture below).
Bailey's oxygen was at 47% for most of the day.  This is a little higher than normal.  It makes me wonder why.  I think it is due to her congested sinuses.
Because the concern for Bailey to retain fluids has lessened, the volume of her feedings has been increased.  Because she is getting more milk, the calorie level has been reduced.
Saturday, February 22, 2003
Weight:      5 lbs. 6.5 oz. (2449 grams)
Feedings:  46 cc of Breast Milk (27 cal) + Dextrose
There wasn't much of a change in Bailey today.  The respiratory therapist tried to put her back on a cannula today at 10:00 AM.  The cannula lasted for 2 hours, when she was placed back on the nasal CPAP.  She was working too hard to try and breath and as a result her CO2 climbed to an unacceptable level.
Bailey didn't have any trouble sleeping in her "C" pillow today and her Morphine was lowered to 0.2 ml/hour.