Wednesday, October 14, 2009

What Doesn't Kill Us Makes Us Stronger --Friedrich Nietzsche

So today was a long day, but at the end of this long day, the three of us are still alive and for that we are grateful.

When I called at 3:30 this morning to check on Andrew, we were told that his chest tube drainage had picked up significantly to over 10cc/kg/hr. That was not something I felt comfortable keeping tabs on from home, so Gene and I made our way into the PCICU. A call was placed to Andrew's surgeon and his heparin was stopped. The possibility of re-exploring his chest at the bedside was mentioned as a possibility to us. This terrified me and made me realize how this whole journey is very much out of our control.

The good news is that stopping the heparin also dramatically slowed down the bleeding and we were able to avoid additional surgery!

I seem to have this love hate relationship with ECMO. This machine has kept my son alive since the day he was born, allowing his lungs to have the needed rest to heal and grow. Patient's that are on ECMO are given heparin which is a blood thinner used to prevent blood clots from forming in the circuit and then passed on to the patient. Andrew seems to bleed too much out of one chest tube in particular and holding the heparin for a while is what seems to slow down this bleeding. Then the fear changes from bleeding too much to developing a blood clot. While I love this machine for keeping my son alive, it has also been the cause of great anxiety. A necessary evil.

With that said, what does not kill us makes us stronger. Each day that Andrew is on ECMO is one more day his lungs are getting stronger.

I heard from many CDH moms that said it took 4-5 tries to successfully come off ECMO. Andrew's medical staff was very much encouraged by his trial off the other day and so we make time our friend and wait for the day that Andrew is strong enough to make his way through life without these necessary evils!


  1. Becky and Gene,

    I'm so happy and thankful that Andrew is doing much better. You 3 were in my prayers all day and will continue to be!

    Love you guys!

  2. Stay strong! Hang in there you guys. I am praying that Andrew's lungs are growing and they are able to take him off ECMO soon. Lucy and Charlie are great for the anxiety. Just hug them.
    thinking of you

  3. Continuing to keep you all in my prayers. Hoping for continued improvement for precious Andrew, so that he will soon be weaned off of ECMO. May God continue to watch over him, and keep him safe.
    Keep the faith, and take one day at a time. You are wonderful people!

    Many hugs from Dale in NJ!

  4. What a joyous day it will be when the trial is successful and every day is one day closer to that day. Praying for peace and strength for the three of you.Prayers are coming your way every minute of every day and Andrews picture is up at every desk in DHP.

  5. We are praying for the day Andrew can come off ECMO. Know that the kids ask about you several times a day, even Leah. I guess the distance between Florida and North Carolina isn't so far anymore.

  6. So we all pray and will continue to do so for however long it takes. Remember to cast all your fears and worries on God ~ He will carry this burden for you! Andrew has proven himself a strong little boy and will keep up the good fight. Each minute, hour, day brings you closer to the time when you will be taking Andrew home with you - again, we are lifting all 3 of you up in prayer each and every day and will keep that up until you tell us Andrew is home - however long it takes, we're with you!!
    Peace and love,
    Tim, Donna, Alex and Lawren
    Your friends from Western Maryland

  7. K was never on ECMO but I have read a lot that the machine can cause problems for baby... as well as save the babies life. This is just ONE reason why they need to do more research for CDH - they could de-flaw this machine.

    I love this post- you sound so positive and that is what Andrew needs.

    But calling in the a.m. was always a battle for me. I wanted to call to hear how she was doing, but I never knew if it was good news or bad. It was a mega stress builder for me. So I hope you guys are doing better with that than I did.

    Hang in there!! You guys are strong! (that may not mean a whole lot... but it's true!) :)

    and I feel like I didn't get any sleep- so if this doesn't make any sense- I'm so sorry! :)

  8. It was such good news to hear that surgery was not needed! Our prayers continue for Andrew's healing, and your strength and peace while he is recovering. Keep holding on to the hand that holds all of you.

    Our Love, Alan & Jeri

  9. Its so good to see you dealing with realities and with your feelings--Mom instincts and concerns far outpassing though modified by doctor training. Not having had your particular challenges, I focus on your daily needs in prayer, but eagerly await and find each of your kind messages very comforting. Thank God for today's life-saving devices, too. You, Gene and precious Andrew literally have thousands praying worlwide for your family and Andrew's healing. Preachers know preachers know preachers ... and dealing with the military, that means both U.S. and foreign. When a baby's life is involved, people worldwide have human concern and share, knowing that prayer is listened to. Andrew has more "extended family" than any baby I've known. Your blog connects him to so very many.
    Love, Elizabeth and Larry

  10. Praying for little Andrew. I can only imagine how stressful ECMO is. Thinking of you guys.


  11. Praise God that the bleeding slowed down. I believe we are all getting such a real lesson in praying without ceasing. I know I am. I thank God for His faithfulness each day in the midst of this storm, and I know He has to be carrying you and Gene through this. He definitely has a plan for Andrew for Andrew has captured the heart of not only everyone in our own family but everyone I work with and so many others all over the country. Andrew is a living testimony to so many that God hears and answers prayers. This blog has blessed so many - God bless you all as you continue this journey one day at a tme, with continued prayers for the 3 of you, Andrew's physicians and caregivers. Love, Mom & Tom

  12. Thank god for no surgery! We Pray for your family everyday and are hoping for a easy recovery for Andrew!! cant wait for the next report Hugs from LaGrange IN

  13. Continuing to pray for Andrew. Praise God for Andrew and praise God for two wonderful loving strong parents! Nicole Knowles

  14. I keep you guys in my thoughts and prayers! Andrew is getting the much need rest that he needs to heal! He will be off ECMO in no time and this will all just be a distant memory when you are holding him in your arms!

  15. Becky and Gene,
    We are continuing to pray! Sending lots of love and hugs over your way.
    So grateful that God protected him from more surgery and that the bleeding stopped.
    People from all over are lifting him up today!

  16. Keeping you all in my prayers! Sofie took several trial attempts to come off ECMO as well. Hang in there!

    Mommy to Sofie, LCDH

  17. Keeping Andrew and you guys in my thoughts. I hope that the next trial off EMCO is the last. Keep fighting Andrew!! You can do it little man!!

  18. I don't know you guys, but I have been praying for you since Andrew was born. I know another CDH mom, Kristen Veirig, and she posted your blog link on facebook the day Andrew arrived. I know some of the anxiety and fear of having a baby in ICU and being between life and death. I am praying for Andrew's full recovery and for God to sustain you two as you wait and pray and wait some more. May God grant you every thing you need in each day -- peace, rest, growing love for each other, and true joy in the time you have beside your precious son. May each moment with him be a moment you treasure and memories you can look back on with joy in the future -- joy in being beside your little gift. I know these days are days you'll never want to relive, but I do hope you can look back on them and see God's presence with you and Hid goodness even in the midst of fear and uncertainty. I am praying and praying for you three.

    Kathryn Apinis

  19. Keep your heads up! He is such a strong little man and God has big plans for him. I can imagine that the ecmo is frustrating. It won't be too much longer before he will be off the machine and able to breath on his own. He is growing stronger with each passing day. Hugs for you three!

  20. It's definitely an up and down roller coaster for the 3 of you. Hopefully his lungs will be developed enough soon to where they can successfully take him off ECMO.

  21. Many days of up and downs. Nothing unexpected. Just keep taking it a little at the time. That is all any of can do at this time. It will happen. Love to you-Becky, Gene and Andrew.

  22. Hello to all!

    Just thinking about all of you this evening!
    The relationship we have when we are faced with medical equipment making some of the decisions
    is thought provoking. Andrew is so loved and my family asks every day, how is that sweet baby doing and of course how you the parents are
    coursing through this journey!

    Will continue to hold all of you in close thought!
    Love and Prayers this evening!!