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Chloe Elizabeth Lewis:  Week 14
(December 16 - 22, 2001)

 

 


 

  
  Day 92 (December 16, 2001)  Cheryl and I visited Chloe after a much needed break.  We came to see Chloe just before her feeding and like clock work she woke up 15 minutes before her feeding and the diaper was changed and her temperature was taken by mommy.  She gobbled down 47 ml of formula (1.5 oz) in about 10 minutes and was alert and enjoying  the visit.

Chloe is growing fast, she is now 5  1/2 lbs and getting bigger.  Unfortunately, we noticed that her oxygen flow was increased to 3/4 of a liter and at 30%.  Cheryl will ask the doctor tomorrow and hopefully it is just a nurse fiddling with the oxygen gauges.

When will Chloe come home is the biggest question we have.  Unfortunately it looks like sometime in the first quarter of 2002. The main issue is her oxygen.  Three out of four doctors want her off the oxygen before she comes home.  The three doctors vary greatly what to do after Chloe gets off her oxygen.  One doctor wants her to get rid of all the drugs she can why the other wants to just get Chloe off the oxygen.  Who knows who is right.

Chloe had her first Diaper Rash today which I suppose is part of Chloe being a normal child.

Chloe is doing great, there are no life threatening issues.  All physical problems that she currently have will over time disappear. Today she was diagnosed with Diaper Rash, which if you are going to have a new condition, this is the top of the list of all possible choices.

 

  
  Day 93 (December 17, 2001) Today was the first day we learned about a possible conflict with our insurance company in regards to Chloe.  It seems that Chloe is not making enough progress and that she should be in "Sick Children's Hospital" in D.C.  Hopefully (Prayerfully) Chloe could make considerable progress before any decision can be made.  Cheryl and I do not want Chloe at another hospital, so the only alternative is that we learn everything that we need to do to take care of Chloe.  It looks like we are on a tight schedule to get smart.

At this point I must mention that Chloe is three months old and the hospital is no place to raise a child.

 

  
  Day 94 (December 18, 2001) Cheryl spent most of the day at the hospital learning how to give Chloe her medicine and how to care for her. 
 		  
  Day 96 (December 20, 2001)  Chloe is still on the oxygen, which is now the biggest challenge Chloe has to overcome.  Chloe has Chronic Lung Disease which means that she has less lungs than her body needs.  It sounds awful but it is something that she will overcome hopefully soon.

Cheryl is spending many of hours with Chloe and she is being rewarded greatly.  Chloe is enjoying all of the time with her mom and time with dad as well.  Unfortunately Chloe is now over three months old and raising her in the hospital is not a good thing.

Chloe now weighs 5 lbs 10.5 oz and is gaining.  It appears that Chloe is going through another growth spurt which is very exciting, and it could mean that her lungs could grow with her spurt.

Still no clue when Chloe will come home. 

 

  
Day 97 (December 21, 2001) The doctors are now experimenting with Chloe's oxygen.  They cut if off and then they see how long she can go without it.  The good news is that she can go for many hours without oxygen (all day except during feedings).  This is one of the big things that Chloe needs to over come before most of the doctors feel comfortable about sending Chloe home with us.

The doctors have also cut off one of the two nebulizer treatments which means that her lungs are getting better.

Our spirits are high, even though she  will not be celebrating Christmas with us at home.

 Chloe now weighs 5 lbs 12.7 oz. 

Chloe likes to be rocked and put in  a swing, but most of all she likes to be the center of attention.