To those affected by a heart defect:

In Haven’s Time…

January 22, 2007 at 6:57 pm by Mom & Dad

Putting Haven back on the ventilator seems to have been a good decision. She has been holding pretty steady today and has been comfortable and restful. Today the doctors started focusing on some of her other health issues realizing that her digestive issues are having an effect on her ability to be strong enough to breathe on her own. She took a big trip down to the first floor for a GI test where they took pictures of how well food moves through her stomach. The results of the test: food is taking a long time to move through her stomach and some is being refluxed back out.

For us, these results were far from earth shattering, but they have started the process of getting a Gastro-Intestinal doctor to study her problems. She may also be seeing pulmonary specialist to make sure her lungs and everything are working okay. While moving quickly through the recovery process reduces many risks associated with prolonged dependence on the ventilator and medications, Haven is letting us know her body has a timing of its own. In the past six weeks she has dug her heels down on several occassions to say “Hold up, I’m not ready yet.” The doctors are trying to pay attention to what her body is telling us and get some of her “smaller” problems under control before taking more big steps. We are thankful for each precious day we have with her, however slow the pace may be. Thank you for helping us to press on through your prayers and encouraging words!

Posted in Recovery #1 | 3 Comments »

3 Responses

  1. Randy and Lori Says:

    I love this verse and pray you like it too. Habakkuk 3:18 & 19 “Yet I will rejoice in the Lord. I will be joyful in God my savior. The sovereign Lord is my strength. He makes my feet like the feet of a deer, he enables me to go on the heights.” Jeremey & Alison, I rejoice in the Lord for you and your steadfast faith in God. I pray that you will remain joyful in God as he is your savior. I pray God will continue to strengthen and heal Haven and daily give you the strength you need. I pray that God will give you a sure footed confidence.

    We love you lots and pray for you constantly.

    Randy and Lori

  2. Sierra Says:

    Good morning Johnsons! I was reading the comment above and I am amazed. That is a part of my favorite passage. The verse before it, verse 17 says “though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stall,18 yet I will rejoice in the Lord…
    You both have been such a wonderful example of rejoicing even though things are tough. I know it has forever changed my life. Haven has too. She is such a good little fighter and I know that soon she will be ready to go home. I am praying for you as always. Thank you for the updates. It sure does help me in knowing how to pray.

    Lord, be with beautiful baby Haven today. Be her comforter and her healer. We love you Lord. Amen.

    Have a restful day today Johnsons! I look forward to hearing about the test results.

  3. The Myers Gang Says:

    Jeremey, Alison and Little Haven, may God be with you today and continue to comfort and strengthen you all. That is our prayer today as a family, to your precious little family, as it is always. We love and miss you all three.

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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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