Week Fifteen
 
Sunday, March 9, 2003
(Click here to go to Father's thoughts)
 
Weight:      No weight taken
Feedings:  Gavage feedings (59 cc Breast milk at 24 cal)
 
Bailey had a terrible day today and suffered a major setback.  This morning, it was discovered that Bailey's CO2 level was very high.  Because the monitor is sometimes incorrect, blood was taken and tested.  It came back startlingly high (78) so the nurses drew another sample directly from an artery.  Although not as high (68), it was still too high.
 
To try and remedy the situation Bailey's inhalers were started again (they were discontinued on the 6th), and she was placed back under her head box with a high oxygen concentration.  She was also reattached to a TCM to constantly monitor her CO2 levels.  As we left the hospital at 2:15 PM Bailey was scheduled to have a chest x-ray taken (the last one was done on February 26th) to examine the condition of her lungs.  There was talk of putting Bailey back on nasal CPAP and even having to re-intubate her and place her back on a ventilator if things got much worse.  When we asked why she was having such a turn for the worse, everyone blame it on the fact that her inhalers were discontinued too soon.  I would like to know why they were discontinued in the first place!  We went home depressed and needing some rest.
 
We were woken up by a phone call from the hospital at 4:45 PM.  The phone call informed us that Bailey's chest x-ray showed that her lungs were collapsing.  She had been moved back to her same bed in nursery "A" and had been placed back on nasal CPAP.  Although we were disheartened by this setback, we were grateful that she wasn't back on a ventilator.  We spent the evening with trying to calm Bailey, who hates the CPAP machine, so that she could get some sleep.  Perhaps tomorrow will be a better day.
 
 
Monday, March 10, 2003
 
Weight:      6 lbs. 10.5 oz. (3017 grams)
Feedings:  Gavage feedings (59 cc Breast milk at 24 cal)
 
Today was worse than yesterday.  Bailey was re-intubated and placed back on the VIP ventilator at 11:00 AM this morning.  While they were intubating her, they noticed what they thought might be scar tissue constricting her throat.  They are current talking about the possibility of a tracheotomy if Bailey's throat was to get any worse.  A tracheotomy is where a hole is created in Bailey's throat and a tube is passed through the hole, down the throat, and into the lungs to provide an unblocked airway.  If this is done, the trach must stay in for a minimum of one year.  No decisions will be made on this until Bailey is visited by the ear, nose and throat doctor.
 
We gave Bailey a bath today for the first time in days.  The picture below is to remind everyone of what the ventilator tube looks like.
 
We, the parents, are hanging in there.  Other than the fact that we feel like we have just gone backwards two months, we are doing fine.  Please continue to pray for Bailey.
 
 
 
Tuesday, March 11, 2003
 
Weight:      No weight taken
Feedings:  Gavage feedings (60 cc Breast milk at 24 cal mixed half with formula)
 
Bailey is now weighed ever other day.
 
Bailey had a slightly better day today, but we aren't even close to being out of the woods.  Yesterday, Bailey rode the vent all day.  In other words, Bailey let the machine initiate every breath her body took.  She was set to a breath rate of 42 BPM which helped bring her bicarb (I'll explain what  a bicarb is in a moment) down from 37.6 (taken yesterday at 3:30 PM) to 31 (taken today at 11:00 AM).  As a result of her bicarb dropping, and for want of weaning Bailey off the ventilator as soon as possible, Baileys breath rate was dropped to zero.  Bailey did fine with these settings (which are essentially CPAP settings using a tube down her throat and not a mask on her nose), but her bicarb jumped back up to 33.6 (taken today at about 4:00 PM).  Again, to try and help Bailey's bicarb drop but continue to wean her off the vent, Bailey's set breath rate was raised to 12 BPM.
 
Bicarb is short for bicarbonate and affects a persons ph (the balance between acids and bases in the body)  A bicarb that is too high indicates that the acids and bases in a persons body are out of balance.  It means that the acids levels are too high.  A normal bicarb is between 18 and 24.
 
There are several components that can affect a persons ph balance.  Two of these components are the respiratory (or CO2 level) and the metabolic (or the bicarb).  The respiratory will change the ph level of a person very quickly.  Because a person can change the partial pressure of CO2 in their blood stream by simply holding their breath, hyperventilating, etc., it is only a good indicator of short term ph imbalance.  When a persons CO2 level is on the high side (event just slightly on the high side) for a long period of time, the body will increase the bicarb to compensate.  In other words, while Bailey's CO2 levels were only slightly high for the past week, the prolonged high CO2 levels caused Bailey's bicarb to rise.  A high bicarb can cause serious problems if left unchecked (especially to the kidneys), but immediate problems include discomfort and headaches.  You would get a headache too if your body's fluids were turning to acid!
 
When we asked why Bailey's CO2 levels had climbed the doctor told us that he thought it was due to the fact that her inhalers had been stopped.  When we asked why her inhalers had been stopped, he explained that she cannot be on them forever, and the only way to see if she was ready to come off them was to try it and see.  I know that they are doing their best, but I wish they would hold off on any more "wait and see" actions until Bailey is much older.
 
Bailey also had an EKG today that was sent to Primary Children's hospital for evaluation.  This will not be mentioned again unless it comes back abnormal.
 
 
Wednesday, March 12, 2003
 
Weight:      6 lbs. 15.5 oz. (3167 grams)
Feedings:  Gavage feedings (60 cc Breast milk at 24 cal mixed half with formula)
 
Another blood gas was taken this morning at 5:28 AM.  It showed that Bailey's bicarb was still too high (31.4) but that her CO2 levels (56.9) were acceptable.  Her oxygen has been at 40% for most of the day and her breath rate is still set at 12 BPM.  This is a small step forward, and we pray that it continues.
 
Bailey's ophthalmologist stopped by today and checked her eyes.  He said that Bailey's eyes looked great that she would not need any more checkups.  In other words, there is no longer any need to worry about Bailey's eyes.  This is a welcome relief in a time when it seems like everything is going wrong.
 
Despite her situation, Bailey really enjoyed her bath today.
 
 
Thursday, March 13, 2003
 
Weight:      No weight taken
Feedings:  Gavage feedings (60 cc Breast milk at 24 cal mixed half with formula)
 
Today hasn't been a good day for anyone.  All of Bailey's vent settings have gone up.  I didn't pay any attention to specific numbers today because they were simply too depressing.  Bailey slept for much of the day, while her lungs continued to worsen.  We hope there will be a change for the better tomorrow.
 
I separated my shoulder this evening ate Karate.  I was doing a dive roll on the floor that had a little too much dive and not enough roll.  The two pictures below are of my good shoulder (first picture) and my bad shoulder (second picture).  If you can't tell the difference between the two pictures, follow the profile of my shoulder in each.  As you can see, my collarbone is much more pronounced in the second picture.  A separated shoulder happens when enough pressure is applied to the shoulder that the ligaments that holds the upper arm in place tear.  This leaves the shoulder hanging about an inch lower than it should be.  Besides being horribly painful, it shouldn't cause any long term damage.  I have an appointment with an orthopedic surgeon on Monday.  We hope that surgery will not be needed.
 
Stacey didn't have anything happen to her, but she was forced to spend the night with me in the ER (as if we didn't already spend enough time at the hospital).
 
When it rains it pours!!!
 
 
 
Friday, March 14, 2003
(Click here to go to Father's thoughts)
 
Weight:      7 lbs. 2 oz. (3230 grams)
Feedings:  Gavage feedings (60 cc Breast milk at 24 cal mixed half with formula)
 
Bailey is now a 7 pound baby but is sill only 17 inches long.
 
Bailey had another blood gas taken today at 8:30 PM.  It showed that while her CO2 levels are continuing to get better (34.2), her Ph (7.612) is still too high.  As you might recall, the acceptable range for CO2 levels is between 30 and 42, and the acceptable range for Ph is between 7.35 and 7.43.  I learned yesterday that the bicarb number that I have been posting on the website for the past few days is calculated from the CO2 and Ph values.  As such, I will no longer mentioned bicarb.  I will only talk about CO2 and Ph.  Just be aware that the higher these two numbers are, the higher Baileys bicarb is.
 
At 9:00 PM, blood samples were taken to be cultured.  The doctors suspect that Bailey might have pneumonia again.  Until the cultures come back and inform the doctors of the specific type of pneumonia that Bailey has they have started her on two antibiotics (Vancomycin and Gentmicin).
 
Bailey's breath rate was turned up to 20 BPM.  Her CPAP on the vent is set at 7 and her pressure support is at 16.  These settings are down slightly from yesterday and are similar to the settings she had when she first came of the vent.  Although this is a good sign, the doctors still continue to discuss the possibility of putting her on a ventilator called "the jet."  The jet is known as the last resort ventilator.  We hope that she will have a turn for the better soon and not have to go on the jet.  We are optimistic that she might come off the ventilator some time during the next week.
 
 
Saturday, March 15, 2003
 
Weight:      No weight taken
Feedings:  Gavage feedings (65 cc Breast milk at 24 cal mixed half with formula)
 
Bailey's 5:43 AM blood gas showed some improvement.  Although her CO2 level was a little high, her Ph (7.399) is finally in check.  We were excited to hear this news and the doctors have stopped talking about putting Bailey on the jet.  When we asked why her CO2 levels were so low yesterday, they told us that Bailey was very upset when they drew the sample of blood for the blood gas.  When a baby is upset, they have a tendency to blow off a lot of extra CO2 which results in a lower CO2 level.  Bailey's pressure support was turned up to 17 today.
 
The 24 hour result of Bailey's blood cultures came back negative today.  We hope that the 48 and 72 hour results are the same.  Regardless, she continues to receive the Vancomycin and Gentmicin among other vitamins and diuretics.
 
Bailey's breathing tube continually gags her and causes her to spit up.  There isn't much we can do for to help her with this.  It is just an example of how miserable she is on the vent.  Despite this fact, Bailey appeared more content today.
 
I took the picture below to show the world where Bailey hides all 7 pounds in that 17 inch body.  Although she has little legs and arms, she is very thick!