Another Update

March 8, 2010

Well, we keep hoping to come out of our doctor appointments for Joshua with good news.  I guess that just isn’t possible.  We went to our perinatal specialist today and received some more news.  First of all, the right sided CDH is, from what the MRI showed, pretty severe.  They were not able to take lung volume calculations because the images they got did not show lung tissue clearly enough.  From the review today, the specialist told us that both lungs are compressed and she was able to take a measurement of the left lung but she couldn’t even spot the right lung at all.  She said that it is most likely because of the liver and intestines compressing the lung severely.  The question she brought up was whether the right lung has stopped forming or if it is just severely compressed.  The lung being compressed is ok depending how much formation has occurred.  That we won’t know when or if they do the surgery.

That leads me to the second thing.  The fluid in his abdomen and chest is continuing to accumulate and she has now diagnosed him with mild Hydrops Fetalis.  The fluid levels themselves are not too severe but she noticed that one of his arms has edema (fluid accumulation).  Hydrops is a form of fetal heart failure in that the heart is not keeping up with the demand for blood to the rest of the body.  However, this can correct itself after birth with the body processing the fluid and flushing it out.  This is where the tricky part comes in.  The longer that the fluid accumulates, the more pressure it will put on the heart therefore increasing the chances of stillbirth.  We need Joshua to stay inside the womb for as long as he can because it will give more opportunity for his body (namely his lungs) to mature.  The more premature he is, the less his chances of survival are with all the defects that he has. The specialist stated that her best guess for the Hydrops is coming from the liver partially herniating into his chest.  Usually, there is a straight shot for the blood to go from Umbilical cord to liver to heart.  Well, since his liver is out of place, it is causing the blood to loop which causes a backup of blood, which in turn, causes the buildup of fluid.

It gets even trickier at this point.  Tomorrow we will find out the diagnosis from the Head UNM Pediatric Surgeon sometime in the afternoon.  Our specialist stated that this has been discussed preliminarily with them.  They stated that with his many birth defects, they are not optimistic about his outcome.  There is just too much going on for him to recover from.  The second thing she said was that if he does have Down Syndrome, then they will NOT be able to treat him at UNM.  They have had no survivors with his many birth defects in conjunction with Down Syndrome and that they do not think it will be worth it for the baby to go through all the pain and suffering only to meet a tragic end anyway.  This means that we may have to go out of state, particularly to UC San Francisco Children’s Hospital, for his treatment.  However, they may have the same policy and not be able to treat him due to the Down Syndrome.  We should have all this info by the end of the week so they say.

We will be doing an amniocentesis most likely on monday next week to find out for sure if he does have a chromosome abnormality.  This will spell out what type of treatment he will receive and where we will go to get it.

I’m sure I am forgetting some of the details but my mind is not in the best shape right now.

So to summarize,

1.  He has developed mild Hydrops Fetalis due to his liver being partially herniated into his chest.

2.  The combination of Hydrops, the AVSD heart defect, right-sided CDH and possibly Down Syndrome is untreatable successfully at UNM.  We might have to go to UCSF for treatment if they will even take him, which is a big if.

3.  We will be doing the amniocentesis on monday next week to find out the status of his possibly chromosome abnormality.  This can cause preterm labor which would obviously be very bad for him at this stage and is the reason that we have put it off until now.

I think that is it.  Please pray for God’s healing hand to touch Joshua first and foremost.  Pray also for God’s Will to take place.  Pray third for Kelli, myself and Matthew as we are trying to deal with this devastating news.  It is such a rollercoaster right now and it is so hard to focus on anything else.  Pray fourth for us to make decisions that we are going to be forced to make.  Thank you all for your support.

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9 Responses to “Another Update”

  1. Lisa Sylvester said

    Jeff,
    I am so sorry about the harsh news concerning Joshua. My prayers are with you and your family. I know that it affects everyone. I truly understand the roller coaster ride you are on. I know that our God will meet your needs, support you, and carry you through. Praying for you to have the wisdom needed to lead your family.
    with love, Lisa

  2. Linda Mages said

    Jeff n Kelli
    i’m so very sorry to hear the latest news.. all of this must surely be devastating to your very heart and souls.. But the truth of life is that we are all in God’s hands everyday.. and none of us are promised a tomorrow.. it is why we must hold and love each other every day..

    when someone is dying from cancer, they say he is “terminal” .. well we are all “terminal” ..everyone of us will someday be released from these bodies that are not made to live forever.. and we will be changed into bodies that will live forever.. for God will give us all new bodies when this happens.. and forever we will be with the LORD…

    and only God knows the day and the hour… and we with human bodies suffer such anguish when we lose our precious loved ones.. but we must KNOW that the moment we lose them, they get their new glorified bodies that allow them to live forever and that in a twinkling of an eye.. we will all be together forever… with a new heaven and a new earth… so we shall forever be with the Lord..

    Read 1 Cor. 15: 35-58 … i pray it gives you strength.. Your son will live, no matter what happens.. he will live forever with you now and in eternity.. we will all be there one day… we just don’t know when that day will be.. for any of us.. i’m sorry, i’m trying so hard to comfort you and give you strength and hope.. and i just hope something i said helps because i love you guys so much.. and i’m so very sad you are facing such news about your precious son Joshua Levi.. I have been praying for God to touch him with a miracle and to completely heal and re-create his little body so that he is made whole and perfect.. in Jesus’ name i pray.. Amen and amen.

  3. Linda Mages said

    Be merciful to me, O God, be merciful to me! For my soul trusts in You; And in the shadow of Your wings I will make my refuge, Until these calamities have passed by, I will cry out to God Most High, To God who performs all things for me. He shall send from heaven and save me… Psalm 57:1-3a

    In God I have put my trust; I will not be afraid… Ps. 56:11

    Hear my cry, O God; Attend to my prayer. From the end of the earth I will cry to You. When my heart is overwhelmed; Lead me to the rock that is higher than I. For you have been a shelter for me, And a strong tower from the enemy. I will abide in Your tabernacle forever; I will trust in the shelter of Your wings. Selah
    Psalm 61:1-4

    My soul, wait silently for God alone. For my expectation is from Him. He only is my rock and my salvation; He is my defense; I shall not be moved. In God is my salvation and my glory; The rock of my strength, And my refuge, is in God. Ps. 62:5-7

    My flesh and my heart fail; But God is the strength of my heart and my portion forever. Ps. 73:26

  4. Nicolle said

    Thinking of you and your sweet baby boy. Fight Joshua, fight!! Hoping that the amnio shows there are no chromosome abnormalities. Keeping you in my thoughts and prayers!

  5. Kristy said

    I am a friend of Katies ( Actually I am the sister in law of her good friend Keli) .
    There is nothing I can say to make any of this easier for you or your family. I have been through some of the same with my son , Ethan , in 2008. I won’t elaborate as I don’t feel you need that right now. I just wanted to stop by and tell you that I am thinking about you and wishing the very best for you all!

  6. Tracy Meats said

    Praying for your family during this very difficult time. Praying that you find peace with all decisions you have to make here on out with your son. (((HUGS)))

    Tracy Meats – Ian’s mom from CHERUBS

  7. Kathleen Hedman said

    Hi Jeff

    We continue to pray for you and your family. Thank you so much for the updates.

    Kathleen

  8. Kathryn said

    I don’t know you, but I went to school with your mother. I’ve been following your updates and just wanted to let you know I am praying for all of you. I hope he does not have Down’s Syndrome, so he has a good chance at fighting all his problems.

    I lost a baby I was carrying at 16-17 weeks, and found out at 17 weeks, but had to wait another week for definite confirmation of death, before we could do anything. So I can relate somewhat to you are going through on some level. It is one of the hardest challenges in life – when your children are not healthy.

    The serenity prayer helps me get through my life (currently battling colon cancer). It may be of some comfort to you – a reminder that some things are out of our hands. I hope it can help you.

    Serenity Prayer
    God grant me the serenity
    to accept the things I cannot change;
    courage to change the things I can;
    and wisdom to know the difference.

    Living one day at a time;
    Enjoying one moment at a time;
    Accepting hardships as the pathway to peace;
    Taking, as He did, this sinful world
    as it is, not as I would have it;
    Trusting that He will make all things right
    if I surrender to His Will;
    That I may be reasonably happy in this life
    and supremely happy with Him
    Forever in the next.
    Amen.

    Kathryn Blume

  9. Loretta Lamb said

    Praying for you. I talked with Hollis the other day and she’d love to talk to you. She remembers very clearly all the bad news she got with Hannah and would love to lift you up and support you and pray with you. I’ll text you her phone number. Joshua’s in my prayers daily and you are too for strength, comfort, and peace. Lots of love, Loretta

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