Week Twenty
Sunday, April 13, 2003
Weight:      9 lbs 3 oz. (4156 grams)
Feedings:  On demand bottle feedings of 24 cal formula
Bailey now weighs nine pounds!
Bailey had a great day today.  She is still handling her feedings very well.  She drank 94% of her daily required volume and didn't spit up at all.  Her oxygen was at .75 liters per minute delivering 35% oxygen for most of the day.
As can be seen in the pictures below, Bailey sat in her car seat for the first time today.  The hospital requires all NICU patients go through what is called a car seat trial before they can go home.  If you live outside of Utah Valley the baby must sit in a car seat for 1 hour without any problems in order to pass.  Because Bailey lives inside Utah Valley she only had to sit her car seat for 30 minutes in order to pass.  She passed with flying colors.  The last picture is of Bailey making "oh lips."  Bailey's occupational therapist told us that babies make this face when they want you to interact with them.
It was strange tonight as we started to say goodbyes to some of the people at the hospital that we thought we might not see again before Bailey goes home.  We have looked forward to this day for a long time, but we have also grown to know many of the hospital staff very well.  It will be fun to have Bailey home, but it is never easy to say goodbye to friends.  Sure, we might see them again, but in all actuality we won't be seeing anyone for a long time.  Soon we will be home with a baby that won't be allowed to have visitors and won't be allowed to go anywhere.
Monday, April 14, 2003
Weight:      9 lbs. 9 oz. (4332 grams)
Feedings:  On demand bottle feedings of 24 cal formula
Baileys weight gain seemed excessive today.  I wouldn't be surprised if something was wrong with Bailey's scale and that tomorrows weight was lower than 4332 grams.
Bailey continues to do very well.  In fact, we are scheduled to room in with Bailey at the hospital tomorrow night for a 24 hour period.  Then we will take her home Wednesday night.  I will take Thursday off work to be at home with my family for the first time.
Bailey was changed to 100% oxygen with a trace flow.  This is the last step before she can go home.  Tomorrow night someone from home health care will come by and teach us how to use the apnea monitor and portable oxygen tank that Bailey will go home on.  I can't believe that she comes home on Wednesday!!!
The pictures below were taken about a week ago, given as a surprise to us by the nurses a few days ago, and given to us on a computer disk today.  Now I am sharing them with all of you.  For those of you who are not STAR WARS fans, she is dressed up to look like Princess Leah.  Although I thought it was cool, this was not my idea.  This was totally a nurse idea.  I like the picture were she is asleep with her light saber.
Tuesday, April 15, 2003
Weight:      9 lbs. 3 oz. (4168 grams)
Feedings:  On demand bottle feedings of 24 cal formula
Today was the beginning of a new time in our lives.  Last night was the last time we will ever sleep without the responsibility of caring for a child through the night.  Everything that will happen in the next few days will be welcome changes in our lives.
At 7:30 PM this evening, we met with an individual from the home healthcare company at Bailey's bedside.  He explained to us how to use the apnea monitor and the portable oxygen tank that Bailey will be attached to 24 hours a day until her doctor decides she doesn't need them anymore.  I was a little surprised that her oxygen was set at a flow of .5 liters per minute, but I'm sure they are just playing it safe for the time being.  I'm sure that Bailey's' pediatrician will lower the flow soon.
After we signed our lives away for all the equipment, I gave Bailey a bath, fed her, and dressed her.  Then the nurse weighed her.  You can see from her weight today that there was a problem with the scale yesterday.  Next, we said some more goodbyes to our friends in the NICU, hooked Bailey up to all of her portable devices, and wheeled her out of the NICU, down the hall and into sleeping room #1.
The first picture below is of Bailey's last moments in the NICU.  The second picture is of us pushing Bailey down the hall away from the NICU never to return.  It is a little strange to think that after we go home tomorrow we can no longer go back into the NICU without getting permission from someone.  The third picture is of Stacey standing next to Bailey's crib in our "rooming in" room.  You can see Bailey's portable tank in the foreground of this picture.  The rooming in room is similar to a hotel room with a bed, bathroom, and refrigerator.  At first we were sad that there was no TV.  I even went home to get my laptop and some DVDs so that we could watch movies.  Little did we know that all we would want to do is sleep.
Bailey was very interested in her new surroundings.  As we pushed her down the hall, she didn't make a sound and her eyes slowly scanned everything around her.  The first picture below is of Stacey holding Bailey in front of Bailey's crib.  The second and third pictures are of me holding Bailey while lying on our bed in the rooming in room.  I waited twenty weeks to hold my daughter while laying down.  It felt great!  For twenty weeks I have sat in a chair and held my daughter.  I look forward to taking naps with Bailey on the couch as soon as we get home.
The night went well.  We took turns getting up with Bailey through the night and I left at 6:45 AM for 7:00 AM meeting at work.
Wednesday, April 16, 2003
Weight:      9 lbs. 1.5 oz.
Feedings:  Bottle feedings of 24 cal formula
It was hard to concentrate at work.  I wanted to be at the hospital with my wife and daughter but I had meetings all day that I needed to attend.  It became even harder to concentrate when Stacey called me at 10:00 AM and told me that Bailey's doctor said we could go home at any time.  Word got around at work that my daughter and wife were waiting for me at the hospital to go home, and I was told that I could skip my afternoon meetings.  I scrambled around for a couple of hours to finish up things I had to get done before I left, and left work not to return until Friday morning.  I stopped by school to briefly meet with a professor about publishing my thesis, ran home to clean up the car and change, and then hurried over to the hospital.
When I arrived at the hospital I hurried and started loading things into the car with the help of Stacey's brother.  I was anxious to get home.  Stacey got Bailey dressed and I took pictures of her "going home" outfit (the first two pictures below).  When the nurse arrived, I put Bailey in her car seat (picture three) and we left.
The first picture below is of Bailey in her car seat ready to go.  She has gotten really good at holding her bink in her mouth all by herself.  On our way out, we went by the front desk of the NICU to say our last goodbyes (second picture).  The third picture below is of the nurse carrying Bailey out of the hospital.  This was Bailey's first time outside.  For insurance reasons, parents aren't allowed to carry babies out of the hospital.  This was disappointing but we were so anxious to get her home it didn't really bother us.
The first picture below is of me putting Bailey in the car.  The second picture is of Bailey in the car ready to go.  I drove home and Stacey sat next to Bailey in the back set.  The drive home was emotional as we could hardly believe that we were taking her home.  It was such a relief to be out the hospital, that four months of frustration finally found an outlet.  I almost had to pull over because I couldn't see the road.  We were so happy.  When we got home, Bailey was asleep so we put her in her crib for the first time.  As you can see in the third picture below she didn't stay asleep for very long.
Stacey picked her up and sat in our glider with Bailey for the first time (first picture below).  While Stacey was holding Bailey, home health came and setup and huge oxygen tank in Bailey's room and dropped off another portable tank.  After feeding Bailey she went into her swing for the first time (second picture).  Bailey was paid a visit from her home health nurse who will come back once a week to weigh her and take all of her vital signs.  Sometime later in the evening I caught Stacey napping with Bailey on the couch (third picture).
The pictures below are of Bailey's new medical equipment.  The big tank in the first picture is about 3.5 feet tall and has a 50 foot tube that we can use while we are at home.  The smaller tank in the same picture is of her portable tank.  The second picture below is of Bailey's portable monitor.  It has to be plugged in when we are at home, but will last for about 8 hours between charging.  Her monitor hasn't made a single sound since we brought her home.
Thursday, April 17, 2003
Last night went well.  Bailey woke up every two to three hours to eat during the night.  We are a little concerned that that she isn't eating enough, but we will continue to do what we were told to do and see if she starts to eat more.
We slept lightly during the night.  I'm sure all parents do, but we have a very specific reason why.  Because Bailey is no longer on a saturation monitor, there is nothing that beeps to inform us that Bailey is not getting enough oxygen.  Because Bailey quite regularly knocks her cannula from her nose and we have no machines to inform us of this happening, we have to check it regularly.  It is a little unnerving, but I'm sure we will adjust.
This is the last daily update I will make.  From now on I will do weekly updates until Bailey is off her oxygen and monitors.  Look for these updates on Mondays.  Thanks you for everyone's love and support but please continue to pray for Bailey, she is not out of the woods yet.