A day in the Life of Claire

This spot is dedicated to the preparation and life of Claire Cox. Claire has been diagnosed with Trisomy 18, which is a genetic disease caused by an extra chromosome at the 18th spot. We know that God can cure Claire at any time, and continue to pray for this; however we also know that His Will, will be done!

Wednesday, November 15, 2006

For any of you paying attention, yesterday (Tuesday) was Claire's 6 week birthday (42 days). You may remember, the cardiologist told us that she would probably start having more severe problems starting around 6-8 weeks, due to her bad heart pumping most of her blood to her lungs, and not to the rest of her body. They said the lung pressure of newborns is much higher at birth, and this pressure starts to decrease to normal pressures around this time (6-8 weeks). This increased lung pressure has been helping push her blood toward the rest of her body. Well, I have to tell you, it seems they are pretty accurate. We "think" we can tell a difference not only in her appearance, but also in her alertness (both seem to be deteriorating). She still has some good days, however, it seems it is more like "good hours" instead of days now. Her breathing seems more difficult most of the time too.

On a lighter note, she appears to have her days and nights mixed up, sleeping a lot of the day, and awake (and crying) almost all night. This has been going on now for 5 days, and yesterday (Tuesday), I thought I had figured out why. You see, we keep her in our arms or her bassinet for the whole day, and at night, we put her back in her incubator (we call it her "house"). The only reason for the incubator was to help her maintain body temperature, which she can do by herself now. So anyway, I decided we were "cooking" her by night (her house stays at 85 degrees). I too would stay up all night and cry if the bedroom stayed that hot (remember after the hurricanes and NO power for weeks). Anyway, we could not wait to go to sleep last night, thinking we would finally get a good nights sleep (for us now, that means feeding her for 1 hour, then sleeping for 2, and then getting back up to feed her for another hour-sleeping 2 out of every 3). Well, needless to say, we must not have been "cooking" her after all, because she still stayed up from the 11pm feeding until the 5am feeding. So when people ask us how we're sleeping, we say, "we're sleeping just like a baby" (you can interpret that many different ways).

Please don't misunderstand us, Claire is a very easy baby to care for most of the time. The only difficult thing about dealing with her is the "stress" level of not knowing. We never know if whatever she is doing at that particular moment, is a Trisomy affect, or just a normal infant cry, or if it may be her last cry. Occasionally, she appears to be crying out (ever so softly) as if in pain, but even normal infants cry out this way (colic, gas, BM, etc). So we just treat her as we did Camille, or any other infant, and just try to treat any symptoms we detect, and if we can't detect any, then we try to perceive something like colic or gas and treat that. If she were older, we could blame teething, isn't that kind of a catch all for toddlers crying for about 3 or 4 years?

When you see Claire, please don't hesitate to tell us if you think she looks better or worse than the last time you saw her. We really would like your HONEST opinion. We see her all day every day, and that makes it hard for us to notice changes over time.

With all this said, understand why we might look as if we have bags under our eyes, or look like we're in our 40's, instead of our 20's :-) .After all, our child is now older than we are (if you count her days as years).

10 Comments:

  • At 6:09 AM, November 16, 2006, Anonymous april said…

    Your beautiful family continues to be in my prayers.

     
  • At 10:01 AM, November 16, 2006, Anonymous Anonymous said…

    Billy and Tammy,
    Both of you are our inspiration to continue to be thankful for the joy and honor of life.
    You are all in ours prayers everyday!
    William Murphree and family

     
  • At 7:59 PM, November 16, 2006, Anonymous Anonymous said…

    I think she looks beautiful and happy and so do both of you .What a lucky little baby to have such loving and patient parents .I know this is the hardest thing any parent could ever live . The Lord smiles at you ,and I know he wants us all to be more like you .
    You both make me want to be a better person ,and I will remember Claire all of my life .
    Kim J.

     
  • At 12:12 AM, November 17, 2006, Anonymous Anonymous said…

    You're doing a fantastic job! Please don't let yourselves stress into ill health. You do what you can. She (and Camille too) needs you to stay strong and healthy. Enjoy her. Really enjoy her. It is all in God's hands. Continued prayers your way...

     
  • At 12:14 AM, November 17, 2006, Anonymous Anonymous said…

    Yes Billy I have been paying attention and I can tell that you and Tammy are keeping a positive attitude . I told you that the love you both have for one another will bring you both through this and more . Stay just the way you are now and keep the positive attitude up . If there is ever anything I can do for yopu fell free to call upon me .

    Henry Barnes

     
  • At 1:47 AM, November 17, 2006, Blogger gracie said…

    Found your blog via Eliot's a while ago.... praise God for Claire and Eliot! My whole attitude to parenting has changed, and just in time for me. My son (10) was diagnosed with diabetes two weeks ago. He will now live with 4xdaily injections for the rest of his life or until there is a cure. The whole week in hospital, I thought of how you daily face the impending loss of a child with such an attitude of love and celebration of life. Each minute is a gift! Thank you for making that so real here on your blog.
    btw, a night where you live, is a day here. So if you're awake tonight and things are dark.... there is someone in Australia where the Spring sun is shining, praying for you.

     
  • At 7:48 AM, November 17, 2006, Anonymous Kim said…

    Happy 6th week birthday Claire! I began reading your blog the day Claire was born,where has the time gone?...I have seen nothing but courage,hope,and perserverance coming from you guys....just keep it up. Do not grow weary doing good. God is with you,if your trust is in Him. He will give you the grace to get through this. Thank you for your attitude that is obviously an example to many!

    Kim (Lifesong)...my sign in has not been working right.

     
  • At 8:07 PM, November 17, 2006, Anonymous Anonymous said…

    Your family hae shown all of us that life is short and very day is meant to be lived. You in my thoughts and prayers often

     
  • At 8:12 PM, October 02, 2007, Anonymous sydney and holden!!! said…

    hey mammy love ya and miss clair sooooooooo much tomorros her b-day i miss her sooo much

     
  • At 8:13 PM, October 02, 2007, Anonymous Anonymous said…

    mammy i really really miss clair!!






    p.s. love yall!!

     

Post a Comment

<< Home

 

what is this?

Tell me when this blog is updated. . .