To those affected by a heart defect:

To pick up where we left off last time…

January 24, 2007 at 12:37 pm by Mom & Dad

Yesterday’s procedure to put in a drainage line into the left side of Haven’s chest cavity was successful. Everyone was surprised to find just how much fluid they were able to pull out of her chest. They initially pulled out three ounces and since have drained out twice as much!

To put that in perspective: 3 ounces of fluid on a 9-pound baby’s lung would be like a 120-pound adult having 40 ounces of fluid on their lung. That’s more than a large drink from McDonald’s!!! No wonder her lung was collapsed. Her numbers improved almost instantly when that fluid initially came off. So that side is continuing to drain. However, chest x-rays from this morning indicate that the upper lobe of her other lung is partially collapsed as well. They don’t believe there is as much fluid there as was on her left side, so they are attempting to treat that without putting in another drainage tube. We’ll see.

Preliminary results from the “tummy tests” indicate that there doesn’t appear to be any structural abmormalities in her digestive system. However, they also show that her body does digest food VERY slowly. What normally would take 20 to 30 minutes to digest takes hours. Unfortunately, since she is currently having issues with more vital functions (collapsed lungs, breathing, blood pressure, oxygen levels), further examinations have been put on hold until those other issues are resolved. In the meantime, they are replacing her NG feeding tube (which delivers milk and medicines directly to her stomach) with an NJ tube (which bypasses the stomach and delivers straight to the small intestine). This should allow her to have more proper nutrition (mommy’s milk) without fear of it coming back up. The specialists in this area will be consulted about more detailed diagnosis once Haven is more stable.

The plan for the next 24 hours is to try backing off the ventilator settings slowly. The goal here isn’t necessarily to take her completely off the ventilator, but rather to make sure she is not dependent on the ventilator being on maximum support. If this is successful, they will also begin to wean the paralytic and sedation medicines. Haven still has much unneeded fluid on board and is very puffy, so she is receiving extra medication to help get that fluid moving.

As always, thank you so much for your encouragement and support. Don’t forget to check out the new page on the site (see the links at the top of the page). Here’s one of the many passages that gets us through these times:

“Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us. For when we were yet without strength, in due time Christ died for the ungodly.” Romans 5:1-6

Sometimes when we tell ourselves the importance of putting on patience and longsuffering (see the end of Galatians 5), we realize through the above passage that patience is not the end goal. Patience is just a beginning step that eventually, through experience,hope, and confidence, leads us back to remebering God’s gift of eternal salvation through the death, burial, and resurrection of His Son, Jesus Christ–apart from any works of our own (see Eph 2:8-9, Rom 5:6, Rom 3:23, and Titus 3:5).

Posted in Recovery #1 | 4 Comments »

4 Responses

  1. Laurie Says:

    Wow…what a busy couple of days for everyone. I’m glad Haven is doing better with the fluid off of her lungs. The way you explained it sure puts it in perspective. As they slowly wean her off of the ventilator and some of those meds you mentioned we will be praying as always for all to go well for Haven and that she can stay comfortable and get stronger every day. Remember to take care of yourselves during this time. It’s easy to forget to do things like eat when you are so busy.
    As always..Jeremy and Alison, you and Haven are in our thoughts and prayers.

  2. Aunt Sally Says:

    I am continually praying for you.and asking God’s blessing on you both and Haven. Havens picture is laying on the alter at my church. The Church is also praying for her. God Bless. Love, Aunt Sally

  3. Ann Says:

    Oh my gosh! I can’t believe that all of this has happened since I left you on Sunday night. Haven has touched a lot of lives, mine included! A few years ago my mother fell and broke her hip. She became very ill. My pastor told me to pray and have God speak to me through His Word. I prayed and opened my Bible to John 11:4. It reads..Jesus said “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.” My jaw dropped to know that God would speak to me like that. I praise God for my Mom’s healing, He gets all the glory, and I now pass on this scripture to you. We have to be praising God for what He is going to do in Haven’s body, and how is healing it right now. She has a lot of people praying for her, fighting for her, and she is tough as she continues to fight daily. She has come a long way! I have enjoyed working with you, getting to know you, and now I, as well as my Bible study group will be praying for Haven and you two, more diligently. I’ll see you on Friday!
    Ann RN

  4. Lori Jo Says:

    Wow, it’s been awhile since I have been able to check on you guys, looks like you’ve been busy! We continue to pray daily for your little one and the kids can’t wait to meet her. We are liiking forward to seeing you at the shower in Allendale. Take care and we love you!

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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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