To those affected by a heart defect:

Manic Monday

May 7, 2007 at 8:41 pm by Mom & Dad

So Haven continues to get rid of unneeded fluid and is looking smaller everyday.  We are very thankful for that.  This morning when we came in, she was bright-eyed and looking all around and was even playful.  It was fun.

However, when we pulled down her blanket to take a look we noticed that her former G-tube site (where we used to have a tube in her stomach, but is now free draining into a little baggie) had a considerable amount of blood being drained out.  In fact, over the course of the next four hours, she drained over 300 mL’s.  That’s a LOT of blood for a baby to lose.  It was so much that her blood pressure dropped immensely.  So, as quickly as possible (which isn’t very quick) we tried to replace the lost blood with new blood and other products to stop stomach bleeding.  By late afternoon, the bleeding stopped, thank goodness.

We’re not sure what the bleeding was from, but probably an ulcer in her stomach (could be caused by a number of factors).  If the bleeding starts up again, then they will want to take Haven back to the operating room to scope her stomach (look around her stomach with a tiny camera) to see what the problem really is.  So far, it appears that we have been able to control the bleed with medications.  We hope we won’t have to try to fix anything surgically as it is uncertain how well Haven will do with yet another invasive surgical procedure. 

Amazingly through all of the hullaballoo today, Haven wasn’t phased a bit (except for her blood pressure).  She napped here and there, but was mostly awake and alert (not in pain).  Now that it’s nighttime, she’s sleeping like a baby. 

Posted in Recovery #1 | 3 Comments »

3 Responses

  1. Randy and Lori Says:

    We have been out of computer range for a few days to attend Aaron’s graduation. We are back and catching up on the last few days. Sounds like Haven has had several adventures. We pray she continues to improve in all areas. You are prayed for, that is for sure.

    Love Randy and Lori

  2. Cora Says:

    Haven continues to be prayed for by many people in the northwest Chicago area. We are pulling for her! God is infinate and able to do things we cannot fathom or see, keep trusting in Him. God Bless you three. Cora

  3. Jenny Stange Says:

    Hello Haven! I read up on your history to date, and I must say that you are already stronger than I am! You’re a survivor and I know God is pulling for you. You’re so lucky to have J&A as your parents and to have some many people praying for you daily. One day you’re going to be reading this blog all about you and the love and faith that your mommy and daddy have for you is going to touch you like it has touched me. Thank you Alison and Jeremy for reminding me how important faith in God is.
    Love, Jenny

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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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