To those affected by a heart defect:

Still puffy…

April 3, 2007 at 5:24 pm by Mom & Dad

Haven had a restful day today.  They increased her feeding amount.  She’s now up to 3 mL per hour.  Still a long way to go, obviously, but she seems to be tolerating them well.  Unfortunately, she continues to retain fluid in her tissues and the cause remains unknown.  Since she is not putting out as much as she is getting in, she is getting bigger and bigger, again.  This plays a direct role in her ability to breathe successfully on her own.  Since our last post, she has had to go back up on ventilator support in order to compensate for the breathing ability she has lost due to how puffy she is.  It appears that we are in another waiting game as we were with the chest fluid.  We’re hoping some new ideas will come to fruition over the next couple of days.  Thanks for your prayers and encouragement.

Posted in Uncategorized | 3 Comments »

3 Responses

  1. G.G.Uncle Virgil 'n Aunt Bonnie Says:

    We’re sorry Haven continues being so puffy. We pray God will give the Drs. more insight as to the cause. Glad to hear she is taking some food. We appreciate the time you take for updates. We’re waiting to hear she can get in the little bouncy seat again. Give Little Miss Haven a kiss from us and our Love.

  2. Sierra Says:

    Two steps forward and one step back…I think it is time Haven learned to Tango instead of the two-step. 🙂 I am definately praying for you baby girl. Jeremey and Alison, your faith and spirit continue to grow and it is amazing. I will pray that God continues to give you strength, patience, and comfort. God’s word tells us that He gives strength to the weary. I am hoping and praying with you that the doctors can figure out what is going on with all the fluid retention. I hope today is a wonderful day for all of you!

  3. Laurie Says:

    Glad to hear Haven is able to take a little food. It will be interesting to see what the heart cath shows. We will be watching for anything you have to tell about that. Our prayers are with your family as you continue waiting and also the doctors, that they may find an answer to Haven’s mysterious fluid retention. Haven is on our mind every day and in our prayers. I’m so glad for you that you could hold her so much the other day. There is nothing like snuggling up with Mom & Dad. Love & Hugs, Laurie

Leave a Comment

Please note: Comment moderation is enabled and may delay your comment. There is no need to resubmit your comment.

This site contains the story of Haven Leigh and serves as a source of hope and encouragement to anyone who has or knows a child born with HLHS, a congenital heart defect, or other terminal illness. Here, we show the rewards of nurturing and supporting a special child while celebrating her memory by sharing her story with others.

Site Under Construction

Please come back soon for the new version of Haven's Heart.net!!!