To those affected by a heart defect:

New Pictures

May 3, 2007 at 8:12 pm by Mom & Dad

Haven had a good day today.  She’s doing well with the antibiotics fighting those infections, and thankfully there doesn’t yet appear to be an infection associated with her dialysis.  Her dialysis tube has not leaked either.  A few more days of that, and we may be able to begin a bit more aggressive treatment.  We continue to increase the feeds very slowly:  a little bit each day. 

We also discussed with the doctor today what our goals should be for her feedings.  You may recall the post a couple of days ago discussing the “normal” amount of formula versus how much Haven is getting.  (“Normal” would be about 27 mLs/hr; Haven currently is getting 8 mLs/hr).  Well, after discussing the situation with the doctor, we found that once we reach 16 mLs/hr, we do not have to increase the volume, but rather can fortify the 16 mLs with the calories and other nutrients to make up for the difference.  This should prove to be very beneficial for Haven because her body won’t be required to handle all that volume, but will still be getting the proper nutrition for a little one her age.  We were happy to hear that.

Please check out the pictures page.  It’s been a while, but we were finally able to get some more pictures up for you to see.  The first three were taken the last couple of days.  Then we have included some bonus shots for you to enjoy.  These were taken several months back when Haven was off of the ventilator. 

We continue to thank God and praise Him for the eternal salvation he has freely given to us through the faith of Jesus Christ.  We are also so grateful for great doctors & nurses, friends, family, and our beautiful little girl. 

Posted in Recovery #1 | 7 Comments »

7 Responses

  1. Laurie Says:

    Oh my goodness! Those pictures are precious. What an absolutely adorable little girl. Thank you so much for the new pictures. And yes, thank you to God for giving the doctors the medical knowledge that Haven is benefiting from. We are glad things are going so well the last few days.
    As always,
    Love & prayers, Laurie

  2. Michelle Halcomb Says:

    How marvelous to see those beautiful little peepers!! I can’t get over how much she favors you, Alison, (sorry Jeremy!!) I am so grateful for your family and our loving Savior who listens and answers our prayers!! Thank you both for being a daily encouragement to me. Hope to see you all again soon! Michelle

  3. Sierra Says:

    Praise God for another good day! Way to go Haven! Haven, your strength never ceases to amaze me. Neither does your mommy and daddy’s. Praise God for the Johnson family and what your lives have taught me.

  4. The Myers Gang Says:

    FANTASTIC updates, Way to go Haven Leigh!!! Keep up the great work Baby Girl. The most recent pictures are soo precious, what a baby doll.
    We will continue to keep you in our thoughts and prayers as always. Thanks for the latest. Love you all soo much!! 🙂

  5. Marcia Says:

    Hey Guys,

    Those pictures are soooo adorable. She is such a sweetie. Tell her to keep up the good work and she’ll be able to have my cheese potatoes and zucchini bread in no time!!
    God continues to see you through each and everyday showing His power and grace.
    Keep you mind stayed on Him and He WILL direct your paths.
    Have A Great and Blessed Day!!

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

    Hi, We’re glad Haven had a good day yesterday. She sure deserves some good ones. Thank you so much for sharing more pictures of your daughter. Her little pink hat is cute. I’m sure those big eyes are taking in all she can of her daddy ‘n mommy. We wish you a restful weekend. Don’t forget to take time for yourselves. It’s always our prayer that God will continue to give you the strength to meet each new day. Sending Love, Bonnie ‘n Virgil

  7. Aunt Sally Says:

    Hey guys, Sorry it’s been a few since I sent any thoughts to you all. I just want you to know that you are always in my thoughts and prayers though. May God bless you and keep you. Love you. Miss you and love you! Aunt Sally

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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.

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