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A Little Deeper in the Woods: July 23, 2012

July 24, 2012

I can’t get over the messages I’ve gotten in the last three weeks. From people I know, people I don’t know, people I’ll never meet. I’ve heard from so many people with so many kind and powerful words to keep us buoyed through this storm. When friends of friends, or acquaintances, or complete strangers, or people I haven’t seen in a decade take the time to reach out and send me encouragement, tell me their story, or send prayers for my little man, I am inevitably moved to tears. I wish I had the time and energy to respond to every single one. Because every one of them makes my heart sing. Such goodness when we’re surrounded by such adversity is really comforting. Thank you.

It turns out the fluid in Oliver’s chest is called chyle. It is lymphatic fluid. It could be caused by a clot in his neck, which is possible because he’s had a line in his neck for 3 weeks (happy birthday Ollie!). They will ultrasound it tomorrow. Hopefully that is the problem. It can be treated with heparin and he’ll be better. It could also be caused by trauma (remember the massive surgery from Friday?) and then it will be more wait and see. There are options, including repairing the leak surgically, but that’s a last resort. Because of the chyle, he won’t be able to eat for a while longer, and he will probably need to be fed a special formula, which means all my hours locked in the pumping closet will have been for nothing, at least until the leak is resolved. Which could be six months. They do daily X-rays already so they will monitor the fluid, there is also a pocket of it on the right side. They will drain it if they need to but for now they’re hoping to control it with lasix. My poor baby just can’t catch a break. Luckily he’s got the smartest, kindest people on the planet working hard to give him one. And the kindest people in the world begging God to let them.

Corinne (Dr Oz) talked to me about his ventilation tonight. She explained that his next big hurdle is going to be that he needs to get himself extubated. He is still on very high settings on the ventilator. She said she’d like to see him moving towards breathing on his own by the end of the week, but that we’d trouble shoot problems as they arose. If I know my Ollie, there’s going to have to be a lot of trouble shooting. But I’m still praying for an easy week that moves in the right direction! He is not out of the woods yet, and with the chyle and the staph, he is in fact slightly deeper in the woods than he was on Saturday. But I love him too much not to remain hopeful. Xo

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Recovering from a tough day

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His dad’s ear

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Love this smooshy face

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18 Comments
  1. Susan Kwolek permalink

    Remember this… after a scary walk through deep forest there is often a beautiful and peaceful clearing Here’s to finding that place soon From there its a walk to the park!

  2. I love that sweet picture of his ear! Super cute. I don’t know if this will make you feel any better, but Bonnie had a chylothorax as well. They put in a chest tube to drain it, and it drained a *ton* (I think one day it was like, 200 ccs). The drainage would seem to ease up, and then it would start back again. Finally after three weeks or so it quit draining and they were able to pull the chest tube. I’ll be praying that Oliver’s resolves quickly and doesn’t cause any more problems!

  3. Michelle Tanney permalink

    What a life little Oliver has had so far! He has had so much happen so early on – more than most of us have happen in our lifetime. But, as you guys have seen first hand, babies are resilient little things. I see no reason why you shouldn’t be hopeful, despite all of his hurdles. I hope one day I will be a nurse to your little guy when all he needs is some help caring for his own children πŸ™‚

    Chin up! Here’s to a good week of Ollie peeing out all that extra fluid.

  4. Deborah permalink

    Rejeanne told us all about Oliver when they came to the states for a visit. We are praying for him and so is my bible study group. Your blog is amazing and so inspiring to others to pray for him. I love all the pictures. My daughter and I looked through them tonight and he is just too cute!! We will pray for the doctors and your family also. We know that God can answer prayers.
    Deborah Boothe (Rejeanne’s sister)

  5. Kareth permalink

    Hi Alex, I continue to pray for Oliver and your family. Nine years ago my son son was not suppose to be but I know that prayer changes everything. Today he runs around the house as if he owns it. Keep believing and holding on to your faith. Weeping endures for a night but joy comes in the morning.

  6. Poor baby, we will continue to pray for him! I know of another CDH baby who developed a chyle after surgery: Carter (https://www.facebook.com/beth.mcbrayer)

  7. Audrey permalink

    I’m praying for your little man Alex! At such a wee age he already has proved to be a fighter! Keep pushing Oliver, we all believe in you!!

  8. melissa lewkowicz permalink

    Alex, I wanted you to know that I read your posts each day, and that mark and I are always thinking about you guys and hoping that we will get to meet Oliver some time soon. You and Tim are two of the strongest and positive people i know, which means that Oliver has those same qualities in him.

  9. Jennifer permalink

    Loving thoughts for you and your sweet boy and amazing family.. Sending you strength and courage Mama, though you clearly have more than I can comprehend. I hope you get to snuggle and cuddle your baby soon. You are so amazing, cherishing each moment you have with him.. Thank you for sharing the deepest place in your heart with us. What a beautiful gift this is. Thank you and best wishes xo He is wonderful and amazing

  10. Anne permalink

    This little boy that I will never meet has touched my heart. I found his story on a friends page and have now followed his fight since. I pray every day for your family and for Oliver to get better! May your strength carry you on through this journey. God Bless xo

  11. Hi Alex, still sending Samuel-fighter energy to Oliver and CDH-mama strength to you. Samuel was a good 5 weeks post-op before he could be extubated because he got a blood clot and 2 staph infections in there. He did the 3 months of twice daily heparin injections and a whack of antibiotics and … now a rockstar! πŸ™‚ I was also thinking of Bonnie and the chylothorax but I see Leslie already posted too.

    This is so hard when you are in it. It’s really “one day at a time” material. Hang in there. And go Oliver go! I’m so glad to know that you are feeling all the love around you.
    Corinne
    Mama to Samuel, lcdh, Feb1/11
    http://www.samuelslight.blogspot.com

  12. Jen Alsop-Lee permalink

    HI Alex – I have been hearing about your family and little Oliver through a friend and although I don’t know you, I’ve kept you all in my thoughts and have channeled everything I can to Oliver’s fight. Your strenght is amazing and I know that no matter what – it is making a difference for your little boy as well as your little girl. You are not alone.

  13. Rejeanne permalink

    Alex, you are such a champion and so is Oliver…he will fight the infections, he will get to breathe on his own…he will have your breast milk again soon….

  14. Joanne Good permalink

    Hello Alex, I just was sent this link to you and Oliver through a friend. I will do long distance Reiki on him. Hopefully that will help him with his energy. Hang in there, and believe that he knows he is safe and loved by so many who don’t know him.

  15. Rachael Morhall permalink

    What a handsome little man. Such an inspiration. You’re doing amazing Oliver, keep fighting it buddy. ❀

  16. All the above message convey more than what I can say. Hang in there Ollie and fight!

    http://ourcdhherolittlea.wordpress.com/

  17. Alex, I am a very old schoolmate of Susan W. Through her FB page, I have been following Ollie’s battle, and I have become a huge fan and supporter. His face is so precious that one cannot help but be moved by his Herculean efforts. I am confident that he will prevail and thrive. Best of luck to you and your entire family.

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