Week Twenty-Nine
 
SPECIAL EDITION
Sunday, June 15, 2003
 
Bailey was blessed today by me at 10:45 AM in the BYU 82nd Ward of the BYU 11th Stake.  Those that stood in the circle with me were Ralph Strong (my dad), Chris Johnson (brother-in-law), Fudge Lindbloom (brother-in-law), William Ward (brother-in-law), Phil Graham (Stacey's uncle), Mark Strong (my uncle), Dave Russell (family friend), Jonas Staker (brother-in-law), Bishop Jex (our bishop), Russell Graham (Stacey's grandpa), Andy Strong (my cousin), and Ken Messmer (brother-in-law's father).  Stacey's father really wanted to be there but was not able to travel for health reasons.  It was a wonderful experience in which Bailey was promised continual health and where it was explained that Bailey was sent to earth early to touch the hearts of many people and that she will be an example to many throughout her life.  Especially her brothers and sisters.
 
After the blessing the entire family met in the park (our condo was too small for everyone) for a Sunday afternoon lunch.  We were joined there by more family that were not able to make it to the blessing.  We had a fun time together.  It was a very special day.
 
Thank you to everyone who traveled to be with us on this special day.  Thank you to everyone who brought food for the lunch.  And a special thank you to my mom for making Bailey's blessing gown.
 
The first picture below is of my dad holding Bailey in her blessing dress.  The second picture is of Stacey and me holding Bailey after her blessing.  The third picture is of me and Bailey.  The fourth picture is of Stacey and Bailey.  The fifth picture is of my parents with Stacey, Bailey and me.  The sixth and seventh pictures are of Bailey in her dress (Bailey's Grandma Strong made the dress).  The last picture is of Bailey on her mat, in the park during the family lunch after the blessing.
 
 
 
Monday, June 16, 2003 through Saturday, June 21, 2003
 
Weight:      10 pounds 12 ounces
Oxygen:     1/32 of a liter per minute
Feedings:  Bottle feeding 20 calorie formula
Length:     22.5 inches
 
We were a little disappointed this last Thursday when the nurse came to see Bailey.  She gained weight fine and continued to grow, but her oxygen saturation was in the mid 80's while she wasn't on oxygen.  This was much worse than the previous week.  We hope this won't be the case next week, but we are starting to loose hope of her coming off oxygen by the time we fly to California, Oregon and back to Utah at the beginning of August.  As such, we will begin the process of getting FAA approval for taking oxygen on an airplane at the end of this week.
 
Bailey's occupational therapist came to visit again on Thursday.  She said that Bailey is doing great!  She said that Bailey is still right on for her adjusted age of 3.5 months developmentally and the that she acts more like a 5 month old socially.  Bailey will talk to her toys, watch people from across the room, notices when strangers are holding her, and smiles at herself in the mirror.  Her favorite new trick is to pull her cannula out of her nose with her fist and stick it in her mouth.  She enjoys sucking and chewing on it.
 
Bailey now eats 3-4 ounces at a time.  She still sleeps through he night regularly and lately has taken to having very vocal dreams.  She cries, laughs, giggles and sighs in her sleep when she is dreaming.  It is very cute.
 
We didn't take many pictures this last week.  The only two we took,  other than the ones we took on her blessing day, are shown below.  I was holding bailey after I had just gone for a run.  I think she has beautiful round eyes!
 
 
 
Week Thirty
 
Sunday, June 22, 2003 through Saturday, June 28, 2003
 
Weight:      10 pounds 12 ounces
Oxygen:     1/32 of a liter per minute
Feedings:  Bottle feeding 20 calorie formula
Length:     22.75 inches
 
Once again, Bailey did not come off of oxygen this week.  She was much closer than last week, but still not close enough.  It has hard not to get discouraged over this.  We have heard so many stories of preemies that stay on the lowest setting of oxygen for a year or more.  Bailey's saturation bounced around from 88 to 95 when .  I think she is ready for the 24 hour study that will tell us if she can come off of oxygen all together but our home nurse doesn't.  She's the professional so I'll do what she thinks is right, but its hard to not become frustrated over this issue because I was just told by United that we would not be able to travel with Bailey on oxygen.  This means that I would miss my 10 year high school reunion which I planned and our family vacation on Lake Shasta.  The stink of it all is that it is United's fault because they booked us on airplanes that don't do oxygen.  Hopefully she will come off oxygen soon.
 
Bailey didn't gain any weight this last week, but she did grow a 1/4 of an inch.  When we weighed her on Thursday, she hadn't had a bowl movement in 36 hours (she usually has one very 24 hours) and she had just eaten.  This makes me a little nervous because if she hadn't been carrying all that extra weight from just eating and from not having a BM, she might have actually lost weight.  I'm trying not to be overly concerned about this right now.  I'll just have to wait until we weigh her again this Thursday and she if she has gained or lost weight.
 
On Tuesday we met my sister Rebecca and her family at my other sister's (Beth's) house.  Rebecca had just had a baby a month ago and so we put all three babies together and took pictures.  In the first four pictures Brooklyn is on the left (Beth's baby), Ethan (Rebecca's baby) is in the middle and Bailey is on the right.  Brooklyn was born April 1st and is already bigger than Bailey.  Bailey is going to need some time to catch up.  Ethan was born May 29th and spent about a week in the hospital because he was jaundice.  He is still little.  He weighed 7 pounds 7 ounces when he was born.  I'm sure it won't be long before Ethan is bigger than Bailey too.  For the last two pictures the babies were joined by Andrew and Michael (Ethan's brothers).  These five children are all the grandchildren that my parents currently have.  I'm sure that will change as the years go by.
 
 
 
Week Thirty-One
 
Sunday, June 29, 2003 through Saturday, July 5, 2003
 
Weight:      11 pounds
Oxygen:     1/32 of a liter per minute
Feedings:  Bottle feeding 20 calorie formula
Length:     23.5 inches
 
Bailey is not off oxygen yet.  This last week I called Bailey's doctor and discussed the possibility of doing the 24 hour study ASAP.  I told him that we needed to know if Bailey was going to be off oxygen when it comes time to take our trip at the beginning of August.  He told me that we would do a 24 hour study within the next two weeks.  Bailey's nurse also said that if she is still border line this next week that she will go ahead and order the study.  I also spent an hour on the phone with United airlines who apologized for not booking us on flights that can handle oxygen (even though I told them we needed it) but offered to do little more.  I let them know that I was not happy but rather than go the rounds with them now I decided to wait until I had all the information regarding Bailey.
 
Bailey gained 4 ounces this week and grew half an inch.  She has been sleeping a lot this week so we were suspicious that she might be growing.  We have felt much better the past few weeks about Bailey's health.  As a result we are getting out more as a family to go shopping, eat out, and run errands.  We don't bother to bring her heart monitor with us anymore.  In fact, we haven't been putting it on her for the past couple of weeks except when she goes down to sleep at night.  This week we even left it off her two nights while she slept.  We are so excited for the day when she no longer is attached to any sort of device.
 
Bailey has discovered her lungs and has learned to yell.  She often yells just to yell.  She is rarely mad when she yells.  In fact, she is usually yelling at her toys as she plays.  She still won't support her own weight on her legs, but almost rolled from her back to her stomach this lat week.  She has become very good at grabbing things and everything goes right into her mouth (including her oxygen tube if she gets a hold of it).
 
On the 4th of July we went to downtown Provo to all the carnival booths and I learned why parents of small children avoid those types of places.  Strollers and packed crowds do not mix!  The first few pictures below are of Bailey in her stroller ready to go downtown.  We spent the afternoon on the lake wakeboarding and jet-skiing.  Bailey even got in the lake (see pictures below).  It was a fun day and I was glad that we had Saturday to recover (last picture below).
 
 
 
 
Week Thirty-Two
 
Sunday, July 6, 2003 through Saturday, July 12, 2003
 
Weight:      11 pounds 4 ounces
Oxygen:     1/8 of a liter per minute
Feedings:  Bottle feeding 20 calorie formula
Length:     23.5 inches
 
We went to church for the first time as family this past Sunday where we were able to stay for all of our meetings.  It was really nice to be together at church as a family.  Bailey was very quite and enjoyed the many new things to look at.
 
Bailey had a rough week this week.  On Monday night we did the overnight saturation study.  I was under the impression that it was a 24 hour study, but it was just over night.  We hooked her up to the monitor while she was still on oxygen only to find the machine reading her saturation at 86% - 87%.  We spent about half an hour making sure that the machine was hooked to her correctly and were disappointed to see no change in the output of the monitor.  Just to see what would happen we turned off Bailey's oxygen only to see her saturation drop quickly to the low 80's.  At this point we turned her oxygen back on.  In order to get her to stay at an acceptable level of saturation we had to turn her oxygen up to 1/16th of a liter per minute.  We left her at a 1/16th and went to bed.  I didn't sleep well that night.  In the morning we called the doctor who told us to leave Bailey at a 1/16th.  When Bailey's nurse came on Thursday we had to turn Bailey up to 1/8th in order to get her to saturate to an acceptable level.  Again the doctor told us to leave her at an 1/8th.  We were very disappointed to take two giant steps backwards.  I was used to the idea of Bailey taking two steps forward and one step back while Bailey was still in the NICU.  I guess I shouldn't have expected that to go away simply because she came home from the hospital.
 
Bailey gained 4 ounces but didn't grow any this week.  Bailey can easily polish of a 4 ounce bottle.  It won't be long before we will need to start buying 8 ounce bottles.
 
Bailey's occupational therapist came by the house on Thursday as well.  She commented on how well Bailey is doing and said that she is her star pupil.  Bailey exhibits no signs of mental retardation and is progressing just fine socially and mentally.  She is still a little behind the curve on her physical development but this is to be expected.  Bailey's occupational therapist  told us of another baby that was born a little bigger than Bailey that we knew in the NICU that is showing some signs of mental retardation.  I guess I shouldn't complain about the fact that Bailey is still on oxygen.  I should spend more time counting my blessings.  Bailey is very close to rolling from her back to her stomach and can roll from her stomach to her back without any trouble.  She has even started to try and scoot along the floor (without much success) to get to things that are out of reach.  She still won't support her own weight with her legs and doesn't have the strength to even attempt to sit up.  Bailey's occupational therapist gave us some exercises to do with Bailey to help her with these skills.
 
One of Bailey's favorite things to do is to watch her dad play video games.  She really likes the bright colors on the screen.  Her game of choice is Zelda: The Wind Waker.  She also likes to watch Rolie Polie Olie.
 
United Airlines finally refunded one of our tickets.  Because they goofed and booked us on flights that do not handle oxygen.  I am now flying by myself.  I will be flying to California where I will attend my 10 year High School reunion by myself.  Then I will fly to Oregon for a week long family vacation.  Stacey and Bailey will drive from Utah to Oregon with Stacey's sister and her sister's daughter.  I will fly home (alone) and Stacey will drive back with her sister.  It isn't exactly what we had in mind, but at least we will be together as a family for our vacation in Oregon.  However, I am quite sad that Bailey's Great Grandma Crane (maiden name, Bailey) will not get to meet Bailey in California like we had planned.
 
Last night (Saturday night, July 12th), Bailey started making sounds like she was having a hard time breathing.  She sounded congested and her nose was draining into her throat causing her to breath through her mouth and cough.  We suctioned her nose (which she hated) and put her back to sleep.  I hope she isn't getting sick.  Maybe she has allergies.  Regardless, I didn't sleep well last night.
 
The first picture below is of Bailey's saturation and heart monitors.  The second picture is of Bailey just after her bath.  She loves being wrapped up in her warm towel after a bath.  The third picture is of a major blowout that Bailey had this past week.  I had the privilege of changing her diaper.  I guess those prunes we are mixing into her formula are doing the trick.  The last picture is of Bailey trying to roll from her back to stomach.  Either that or it is her impression of a crescent moon.