Wednesday, October 7, 2009

Two in One



Andrew's day started out by making his way to the operating room around 8:45 a.m. It was quite a transport crew that required security blocking the halls to make room for all of the equipment required to transport our sweet little baby of less than 10 lbs to the operating room. He was wide awake and looking all around when they came to get him. Gene handled this much better than I did. I was in complete mother mode and every bit of medical knowledge I had was out the window. We received frequent updates and were so fortunate to have an incredible team of people who love us and Andrew working on him to save his life. We will be forever grateful for them! He returned to us around 3:30 pm with the same amount of equipment and support.

We knew Andrew was to have his aorta repaired and that if the diaphragmatic hernia looked mild, they would repair it then as well. We did have some surprises in this regard. It turns out that his hernia was so severe that they were not able to repair his aorta unless the hernia was repaired immediately to leave room for the aorta to heal and not cause too much scar tissue. His entire left diaphragm was missing and his spleen, small and large intestines and stomach were up in his chest. His liver was down in his abdomen. The left lung that was visible was very rudimentary and did not appear to have normal vasculature. He did not look at the right lung because the heart was pushed to far over to the right side. The good news is that his aorta was pretty straight forward to repair. He was anticipating a very difficult aortic repair, so we were thrilled to have this in Andrew's favor! They attempted to come off bypass, but his lungs were too underdeveloped so he placed Andrew on Venoarterial ECMO which will be able to bypass his heart as well as lungs should his heart have too much of an insult after surgery. The blood clot found the other day was also absent from the direct examination of the heart.

He has two chest tubes to drain fluid from his chest and a Tenckhoff catheter which will help drain fluid from his intestines and is available for temporary peritoneal dialysis should his kidneys suffer a temporary insult from the surgery. The plan from here is too wait and see how much lung development we can recruit- so that is where people can start their prayers! Please pray for lung development and expansion. People can continue to develop lung tissue until 8 years of age- so it is possible that he can make it through this now that his lungs have room to expand! While he is one of the most severe cases of CDH, his surgeon said he still has hope and that is a wonderful thing for a parent to hear!

Thank you for your continued prayers and support. We anticipate the next several days to be rough and hope to make big progress after that. Andrew, Gene and I all appreciate your encouragement and have been overwhelmed by the care and compassion of those around us!

40 comments:

  1. We are praying! Andrew is a fighter and with God's grace he will come through this! God bless both of you and keep the faith!

    ReplyDelete
  2. What an amazing boy you have! I will begin praying for lung development and expansion immediately! You and Gene are such wonderful parents. Go Andrew!!!!

    Love,
    Robin

    ReplyDelete
  3. Praying for lung development!!!!!! Thank you so much for the updates. We are praying for your little man. He is totally rocking the punk hair do. I love it.
    Emily

    ReplyDelete
  4. I am a friend of Susan's....and I first heard your story through her FaceBook page. Ever since, I've been following Andrew's story as if he were my own nephew and I'm sending you many prayers and positive thoughts your way. I know that God is keeping Andrew safe and secure to allow him the time to heal....and that he has your whole family surrounded by his arms.

    ReplyDelete
  5. I am sorry to hear about the severity of the hernia, but I am glad that they were able to repair everything at one time. I had worried about Andrew having to have his CDH repair separately. I said a prayer for you this morning at 8:30 and then several times during the day as I thought about him. We will continue to pray for his strength and lung development!
    ~Beth Cole

    ReplyDelete
  6. Thank God - 2 surgeries in 1 - and now everything is in order for proper lung development to take place, the surgeon is hopeful and best of all God is faithful. As the T shirt says "let the beginning be completed and let God get the glory". Love and prayers continue for our amazing grandson and his wonderful parents. Love, Mom & Tom

    ReplyDelete
  7. Andrew is an amazing boy! Two surgerys at one time..how wonderful! I'm so glad that the aortic repair was less severe than anticipated. As for the missing diaphragm and organ displacement, I can completely relate. I will pray for a speedy recovery from the repairs as well as lung growth and function development. You two have a strong, beautiful boy!

    ReplyDelete
  8. Good news!! We have been praying hard for you all today, and knew Andrew would come thru like a champ! It is probably better to get both the surgeries done at the same time--so now just praying for a quick recovery, and for him to continue to AMAZE everyone!!

    ReplyDelete
  9. Philippians 4:13
    "I am able to do all things through Him who gives me strength."

    Hooray!!! So thrilled God is preserving your precious family and guiding physicians to help heal beloved Andrew.
    Love, Elizabeth and Larry

    ReplyDelete
  10. Thank you so much for keeping us informed!!! I will continue to pray for you all and especially for Andrew's lung development. I am so excited that he was able to pull through the surgery like a champ!!! What a strong boy you two have.

    Thinking of you often,
    Rebecca Roper

    ReplyDelete
  11. What an unbelievable day for you guys!! God has been working miracle after miracle for Andrew and I know He will continue to do just just that until Andrew is completely well. I will continue to pray for your family. Please know that I am thinking of you every day.

    ReplyDelete
  12. Praying for strength for you both through these next couple of days. Andrew is such a fighter and is so amazing. Praise God that they were able to repair both and he only had to really have one surgery. Praying that Andrew continues to get stronger everyday. These CDH babies are amazing they are so strong.

    Jenny (Weston's Mommy CDH survivor 7-9-08)
    http://westonsjounery.blogspot.com/

    ReplyDelete
  13. I am so thrilled that the day was successful. Lung development will now move to the forefront of our prayers. Take a deep breath now and get some rest. God is good, LuAnne

    ReplyDelete
  14. So glad to hear surgeries went well and two procedures in one. Will continue to pray for baby Andrew and for both of you.

    Love,
    Dai
    San Jose, CA

    ReplyDelete
  15. Becky, Gene and Andrew.
    What a day for the three of you, but a day with many, many belssings! You must be mentally and phyically exhausted. Becky, there is nothing wrong with going to the total Mother mode. You are indeed a beautiful and very special family. A special request- Andrew has a fantastic team taking care of him; you and Gene must take care of yourselves also. That is a must so that you can be there at your best for Andrew. The prayers are still flowing.
    Love,
    Paula

    ReplyDelete
  16. We are always praying, Becky, Gene and Andrew! What a fighter he is!!! And an inspiration to all who read his story.

    ReplyDelete
  17. Good Evening:

    I was so hoping that when I came home this evening that an update would be saying that your sweet Andrew was able to have the surgery done.
    Will pray for his little lungs to stretch out.

    I thought it was most remarkable that he was awake for awhile. What a joy that must have been to see those beautiful eyes.

    My family and I are now and always will be holding you all in close thought.

    Close your eyes and let all the warmth and comfort from all carry you through the next
    few days. Good dreams Andrew and love to all of you!

    ReplyDelete
  18. We are praying for you and Baby Andrew every day!!

    Love, Melissa & Brad Rhodes

    ReplyDelete
  19. I must share with you that my daughter's right lung was a quarter of the size it should be, and she's now 3.5 years old, and it's almost the size it should be!! Amazing. She too was on dialisis and they said that she may need a transplant one day, well her kidneys now function just fine! Miracles happen everyday, and we witness them with these amazing babies!! Congrat's baby Andrew, you are so strong!

    ReplyDelete
  20. I am so happy to hear that the surgery went well. I will pray that his lungs develop well and he will make a full recovery. I'm also glad that all the doctors remain optimistic. God is so great!

    ReplyDelete
  21. I am so glad to hear that the surgery went well. Two for one? Now THAT was a surprise! Hoping for a quick and uneventful recovery.

    ReplyDelete
  22. OK, so this is definitely the scariest part of the CDH rollercoaster, but I read quite a few optimistic things in this update. Thank God the aortic repair was uneventful and that there is SOME lung tissue, even though it's small. Praying for an easy recovery for Andrew and his parents! Thanks for taking the time to update Andrew's fans!

    ReplyDelete
  23. praying for Andrew to recover well from the surgery and grow some good lung tissue! Praying for you two as well! ((hugs))

    ReplyDelete
  24. Yeaaa Andrew!!!
    Yeaaa Mom & Dad for a miraculous day!!!
    WE are praying for many more good days of healing. Thank you God for your miracles today!
    Love you all, Mom & Dad

    ReplyDelete
  25. Thank god!! Andrew came threw the surgery and hopefully he wont have to have anymore surgerys!!We are praying for his lungs to grow! and sending hugs for mom and dad! Praying from LaGrange In

    ReplyDelete
  26. Praying for you and your family.

    ReplyDelete
  27. you'll hear over & over that it's like a roller coaster.

    well, it isn't. you choose to go on a roller coaster & know the outcome. it's more like being in a car wreck, everything very slow mo and nothing really making sense though it's all really sharp and just totally out of your control and with many many possible outcomes spinning from how every second takes shape into the next.

    and that sucks. it just does. and i'm sorry that there's any reason for anybody ever to be traumatized about the baby they care for so fiercely being in so much danger. (can you tell i have some issues since my 25 weeker spent 7 1/2 months in nccc at carolina?)

    but i also know that comments like this even from online acquaintances or even strangers truly helped me - so know i'm praying for andrew, and y'all.

    sincerely,
    marci ('babyduck' on many boards. feel free to read the thread about jameson on scubaboard, 'jameson karst edwards'.)

    ReplyDelete
  28. We're so glad that the surgery went well & even more happy to hear that Andrew's surgeon is optimistic. Sorry to hear about the severity of the hernia, but glad it's repaired and praying for Andrew's little lungs to take off!!

    ReplyDelete
  29. We continue to pray for you all from way up here in Western Maryland. May you continue to find strength and peace in God's love for you. Cast all your cares and fears on Him ~ Keep up the good work and fight hard little man! God is with you!!

    ReplyDelete
  30. What a day the three of you had! We are so grateful for the miracles God continues to perform in Andrew's life. Our prayers are for Andrew's speedy recovery from surgery, and lung development. Becky and Gene, we are praying for your continued strength for the journey.

    Our love and ever constant prayers, Alan & Jeri

    ReplyDelete
  31. What a day for you. I hope that it's a smooth ride from here. You are in our prayers.

    ReplyDelete
  32. Reading this post made me feel so comforted about today's events...knowing he has the two major things out of the way that he needed done, to start his recovery! I was thrilled to hear about the "easy" (well, easier than expected... :) aortic repair. And in regards to the severe hernia, we know how that is...M's left lung still doesn't have too much vasculature, but it's expanded SO much since the intial repair, in a short three months. We will pray for lots of lung expansion starting NOW! I love your attitude about how lung tissue grows until they are 8 or so- Now those are the hopeful thoughts you need to keep in your heads! You have a great attitude and KEEP UP THIS HOPE! I am so glad that your surgeon has expressed the same... that is a great thing to have on your side. I even felt comforted that he went on VA ECMO. It's a lot of "stuff" that most people wouldn't be excited about, but going through what you've been through, it's ALL good news and things to be excited about in my eyes!
    Love and prayers! L

    ReplyDelete
  33. WOW! Lots of positive things happening today!! I am so glad that he was able to have both issues addressed in one surgery! That is fantastic! And praise God that the clot is gone!!! Hope exists even in the darkest of situations... and here it is for Andrew! So happy for you both and your little one.. who is absolutely gorgeous btw! I love the pic with his little eyes open. I know you can't wait until the day when you get to hold him, and I hope it comes soon for you. I think it was about 6 days after my little one's heart surgery before I got to hold her... very scary with chest tubes still in, but breathtakingly special! I'm praying for lung development, and praying for a quick and peaceful recovery from surgery. God bless you all!

    ReplyDelete
  34. Praying for your precious little son...
    and for all involved.

    Dawn
    Carter's friend

    ReplyDelete
  35. Andrew is a true miracle! We are praying for him and both of you. I have forwarded his blog to co workers and friends who are also praying for you and baby Andrew.
    Debbie

    ReplyDelete
  36. Hey Andrew: get some rest now and build up your strength little tiger.

    ReplyDelete
  37. Andrew will continue to be in my prayers!

    ReplyDelete
  38. Praying for Andrew...and you guys. He is a BEAUTIFUL baby!!!!

    ReplyDelete
  39. Becky and Gene, I don't know you personally, but came to you through another blog. I have been keeping up with you all, for quite some time now. Your son is absolutely beautiful, (love his hair!), and you are both wonderful people, and parents. Andrew is a very lucky little boy, to have so many people praying and loving him. Bless his heart, he is a strong little one,and quite a miracle, having two surgeries at one time. With his Mommy and Daddy's love and strength,(and gentle touch), along with all of us out here pulling and praying for him, Andrew should be getting better and stronger, in no time. Continued well wishes,and Hugs for you all.

    Dale from NJ

    ReplyDelete
  40. i heard about you good news today 10/8. you baby boy is just such miracle! you all have been in my thoughts for quite a few days now. i have been praying for you each time i think of you and was praying especially hard for baby andrew when he has in surgery yesterday. he is so beautiful! you have an amazing little boy who has an amazing Father looking out for him and answering prayer. i know your road is still long and will have more bumps but the Lord keeps giving you hope! we will keep praying:) jenny hokuf (from md)

    ReplyDelete