Monday, April 11, 2011


I feel like I've glimpsed the future.

Yesterday, DQ had to be placed on oxygen because of the RSV. That is not surprising. What got me is that just before bed, they gave her steroids for the first time this hospitalization. She did great and probably didn't need the oxygen, but I made it clear I wanted her to sleep, so the nurses let her be. She slept great! Her heart rate was closer to an average 3 year olds heart rate. She slept comfortably. It was as if she wasn't running a marathon in her sleep like she normally does.

DQ obviously needs oxygen. It helps. For the first time, I really see why the docs made her wear oxygen to bed last year. Her special lungs need the extra help and the rest of her body likes it. With the help, she could rest like a healthy child.

Today, DQ is in the best condition she will ever be. In the future, she will only decline absent some miracle. She will need more aids.  I glimpsed the future and I believe my baby will need to go back on oxygen at night. Eventually, she will need oxygen during the day. I don't think we will hit this point any time real soon, but it is there. Since the docs can't fix her lungs, this is her future.


  1. M.O.L., I'm thinking about you right now and hoping for the best for the DQ. I wish there was an answer--a specific treatment for her. I hope that in the future there will be one. In the meantime, I can only imagine the heaviness of your heart. It's my hope that she will receive whatever she needs to be her happy little self doing what makes her happy. And, in that, lift some of the heaviness from your heart.


  2. Future glimpses are so hard sometimes. We know so much about what might (probably will) happen with our little ones and there are days it is crystal clear (these are my scary days). I will continue praying for more medical advances for all of our little ones. They have come so far and I pray that we still have 'pioneers' in the medical profession that will not only extend our babies lives, but a way to make them better.

  3. I am sure it is hard seeing that she needs the oxygen more. Praying for all of you each day! Also praying for the advancements desperately needed to happen so the DQ can be healed!

  4. I was about to say I know it must be scary for you... but of course, I have no idea...

    I am glad to hear she got some rest, and I hope it helps her little body kick this thing quickly.
    Thinking of her.

  5. Oh my gosh. Huge hugs to you all and lots of prayers.

  6. I am just catching up on what has been going on for you over the last week or so, and I am so sorry to hear about it.

    As always, there are warm thoughts and wishes coming your way from over here.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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