Week Twenty-One
 
Sunday, April 20, 2003 through Saturday, April 26, 2003
 
Weight:      9 lbs 8 oz. (4156 grams)
Oxygen:     .25 liters per minute
Feedings:  Bottle feeding 24 cal formula
 
Bailey was in the hospital for a grand total of 137 days.  It has been wonderful to have Bailey home.  I drive by the hospital now and think happily to myself that I don't have to go there anymore.  It is truly wonderful to have Bailey in our home.  One of my favorite things to do with Bailey, besides make her smile and laugh, is to take a nap with her asleep on my chest.
 
 
Bailey has a home health care nurse who comes to our house every Friday.  She came and saw Bailey on the 18th and again on the 25th.  I didn't write down any details from the 18th because we had just barely left the hospital, but I did make a few notes from her visit on the 25th.  Bailey now weighs 9 pounds 8 ounces.  An hour before the nurse arrived, I was instructed to turn Bailey's flow down from .5 liters per minute to .25 liters per minute.  When the nurse arrived she hooked Bailey up to a saturation monitor and monitored Bailey for a few minutes.  Bailey maintained an oxygen saturation of 97% so the nurse instructed me to leave Bailey at .25 liters per minute.  We will continue this process of cutting Bailey's flow in half each week as long as Bailey can handle it or until she gets to 1/32 of a liter per minute.  At that point they will do several tests to see if Bailey is ready to come completely off oxygen.  Although it is a small amount, some babies have been known to need 1/32 of a liter for up to two years.  We pray that Bailey will not need oxygen that long and hope that she will be off the oxygen within a couple of months.
 
Bailey's apnea monitor has not sounded even one time since she came home.  She will have the monitor as long as she is on oxygen and possibly longer.  Since the alarm on the monitor has never sounded, I don't think that she will need the monitor past the time she needs oxygen.
 
This past week on Wednesday, we took Bailey to see her pediatrician.  He said that she looked great and that we would need to come back in a few weeks to get an RSV shot for Bailey.
 
We took the following pictures so that we could always remember how much bigger Bailey was when she came home than when she was born.  When we saw the picture of her next to the dollar bill we laughed out loud.  She looked huge compared to the bill.
 
 
 
This is another picture of Bailey and me taking a nap on the couch.  I looked forward to this for so long, I don't think I will ever get enough.
 
 
When Bailey first came home she had a little trouble eating.  She was eating less and more frequently.  This not only worried us, but was taking its toll on us having to feed her every hour.  I gave her a blessing and her feeding immediately began improving.  She now eats every three to four hours during the day, and drinks about 2 to 3 ounces at each feeding.  Once in a while she surprises us and drinks 4 ounces.  Nights have been good.  Bailey goes to bed between 10:00 and 11:00 PM and sleeps until about 4:00AM.  She then eats a couple of ounces and goes back to sleep until 8:00 or 9:00 AM.  Stacey took these pictures to show some people at work how big Bailey had gotten.
 
 
On Friday we took Bailey for a walk in her stroller.  We went by Hollywood video (Bailey did not go inside).  We didn't find anything to rent so we went home.  The first picture below is of Bailey in her stroller for the first time.  The second picture is of Stacey sleeping with Bailey on the couch.
 
 
 
Week Twenty-Two
 
Sunday, April 27, 2003 through Saturday, May 3, 2003
 
Weight:      9 lbs. 4 oz. (Read below)
Oxygen:     1/8 of a liter per minute
Feedings:  Bottle feeding 24 cal formula
 
Bailey had a great week and, believe it or not, Bailey is now sleeping through the night.  No lie!  Monday night we put Bailey down for the night at midnight and she didn't wake up until 7:00 AM.  At that time she took a bottle and went back to sleep for another couple of hours.  Since that night Bailey has gone to bed between 10:00 PM and midnight and slept for 7 to 9 hours.  Then she always wakes to drink about 1.5 ounces of formula and goes right back to bed.  It's great.  I guess we will have to wait until our second child before we will know what it is like to not get any sleep for an extended period of time.
 
To get a good idea of how much bigger bailey is now than when she was born look at the pictures below.  Click on the pictures below to see a true life comparison of Bailey's hands and feet now to when she was born.
 
 
Bailey's regular nurse was gone this last week so we had a substitute.  Everything was fine except she didn't gain any weight.  In fact, the scale this week showed that she lost 4 ounces.  Her oxygen was again cut in half to an 1/8th of a liter per minute, her lungs and heart sounded great, and her oxygen saturation was great.  I don't know if I believe that Bailey didn't gain any weight because she has been a really good eater for us.  Because this was a different nurse, it was also a different scale.  Just like each of the scales in the NICU gave a different reading on Bailey, I suspect that this scale reads differently than the one her regular nurse brings.  Her regular nurse will be back this Friday and we will know then if Bailey isn't gaining any weight.  Some friends of ours that we met in the NICU that brought their baby home about the same time we did had to place an NG tube (nasal feeding tube) back in their son because he wasn't eating.  We pray that this won't happen to Bailey.
 
The following pictures are of our smiling, giggling daughter.  One of her favorite things to do is stare at her mom and dad and giggle.
 
 
 
Week Twenty-Three
 
Sunday, May 4, 2003 through Saturday, May 10, 2003
 
Weight:      9 lbs. 11 oz.
Oxygen:     1/16 of a liter per minute
Feedings:  Bottle feeding 24 calorie formula
Length:     20.5 inches
 
Bailey had another great week.  For starters, Bailey's oxygen was cut in half again on Thursday when her nurse visited our home.  If we continue with this trend, Bailey will only be on oxygen for another two weeks.  Hopefully the monitor would go at the same time.  We look forward to the day of having nothing connected to Bailey, where we would be able to freely walk around holding our daughter without having to drag anything with us.
 
Bailey's vision therapist visited our home on Wednesday.  She said that Bailey's vision was developing normally, and that she was processing well all that she sees.  Her vision development is at the very least the equivalent of a two and a half month old (Bailey's adjusted age) but some of the characteristics she displayed where equal to a four or five month old.  Bailey does well gazing at things and following things with her eyes.  She also loves watching TV.  The vision therapist said she didn't think she would have to come back, and gave us some suggestions of games to play with Bailey to help her vision to continue to develop normally.
 
On another note, Bailey did gain weight this last week confirming that the scale from the previous week was not accurate.  Bailey is eating well and still sleeping through the night.  The only time she wakes up at night is if she has a really wet or really messy diaper.
 
Bailey has started making spit bubbles and loves to lick and suck on her hands.  I know it sounds gross, but it is actually really cute.  She has also started making "I'm trying to talk" noises.  You know, the kind where you can tell she is trying to tell you something, but she is only making little baby noises.  She has also started grunting.  This isn't as cute as the talking noises but makes us laugh.  Sometimes we can make her grunt by grunting ourselves.  She continues to laugh a lot and likes being tickled on her cheeks.  She still doesn't laugh out loud.  She just sort of giggles and squirms a lot.
 
On Monday, Bailey was paid a visit by her cousin Brooklyn who was born on April first.  Brooklyn is already bigger than Bailey.  We used to think Bailey had a lot of hair.
 
 
The two pictures below are of our happy baby and sleeping with dad.  Bailey and I love taking naps together.
 
 
Stacey bought this shirt for Bailey as a surprise for me on Saturday.  It is already my favorite.
 
 
 
Week Twenty-Four
 
Sunday, May 11, 2003 through Saturday, May 17, 2003
 
Weight:      9 lbs 12.5 oz.
Oxygen:     1/16 of a liter per minute
Feedings:  Bottle feeding 24 calorie formula
Length:     21 inches
 
Bailey had another great week.  Everything went really well except that we didn't get to turn her oxygen down this week, and she only gained 1.5 ounces.  I'm not too worried about the weight issue in the short term.  Sometimes she is fed right before she is weighed and sometimes she isn't.  This can really affect Bailey's weight.  If she didn't gain weight in the long term I will start to worry.  As for now, I'm not worried.
 
While the fact that we didn't get to turn down her oxygen was disappointing it doesn't represent any major setback.  We are anxious to have a baby that we can carry around the house without dragging cords and monitors with us.  The fact that we didn't get to turn her down this week just means that she will be on oxygen for at least one extra week. We were hopping that she might come off oxygen the end of next week.  Now it will be two weeks at the earliest.  An hour before the nurse came on Thursday we turned Bailey's oxygen down to 1/32 of a liter per minute.  When the nurse got here and tested Bailey, Bailey's oxygen saturation was in the low 90's.  It could have been much  worse.  The low 90's is not bad by any means so we are hopeful that we will get to turn her down this week.  In fact, I am quite confident that Bailey will be turned down this week.  A few minutes before the nurse arrived, Stacey noticed that Bailey's oxygen tube was kinked and not allowing any flow.  In other words, the saturation in the low 90's represents a baby that was largely without any supplemental oxygen before being tested.
 
Bailey is still sleeping through the night!  She regularly sleeps for about 9 to 10 hours a night, wakes up and eats, and then goes back to sleep for a few hours.  She doesn't nap much during the day, but she sure does sleep well at night.  My mom says this is the exact same way I used to be as a baby.
 
Bailey has discovered her voice.  She regularly makes talking sounds to get our attention.  Her laugh is also coming along.  Instead of little baby giggles, she is laughing more loudly and maturely now.  She smiles a lot and really likes her baths.  The pictures below are of our beautiful baby girl in the bath tub with her mom (don't worry, all the pictures are G rated).
 
 
Last Saturday was the NICU reunion.  We checked with our doctor and he said it was okay to go if we kept her away from other children...so we went.  All of Bailey's nurses, respiratory therapists, and support staff said Bailey looked great.  They also said she is one of the most beautiful babies they have ever seen.  We have to agree.