Saturday, October 10, 2009

The Good, The Bad And The Truly Frustrating!

We started off yesterday with some pretty bad pulmonary hypertension. This is pretty typical for CDH babies but one of the most frustrating aspects from a parent's point of view. Andrew was placed on minimal stimulation which means we could briefly touch him or give him a quick kiss when we entered or left the room and that was it. He had Bose headphones placed over his ears to decrease the amount of noise stimulation as well. Any parent would just want to hold their baby and try to make it all better. I know from a medical standpoint, the decreased stimulation is what he needs, but it doesn't make it any easier. Watching and waiting is all that can help.

Andrew also was having trouble keeping up his oxygen levels in his blood. He had a lot of fluid build up (pleural effusion) in his right chest that was preventing his right lung (his good lung) from expanding. His surgeon placed another tube in his chest to drain off this fluid. The scary part about this is patients are on a lot of blood thinners while on ECMO which can make this very bloody. His surgeon wanted to stop the blood thinners for several hours before placing this tube which is also risky because he then has a greater chance of developing a blood clot. Thank God we have a fantastic surgeon and there were no problems!

Andrew has two incisions (one sternal or chest and one laparotomy or abdominal) three chest tubes, one pulmonary artery catheter, one umbilical arterial line, one peripheral i.v., one tube to drain fluid from his abdomen, the ECMO tubes, the breathing tube, the nasogastric tube that drains stomach contents and a tube to drain urine. He is being kept comfortable with Morphine and Versed and is still opening his eyes but does not appear to be in distress or discomfort.

I include some of these details because I want other parents who are facing these obstacles to not lose hope! This journey is not for the weak. It is a long, painful, uncertain and scary road, but worth every part of it when we get to bring Andrew home with us!

Besides the frustration of pulmonary hypertension, another aspect equally painful is going home for the first time without your baby. That is what I did yesterday. I cried as I think any mother would, but then I picked myself back up and actually pumped every 3 hours while sitting in the glider in Andrew's nursery. I found it reassuring and hopeful and it felt like the right thing to do. I know we will bring him home, it is just a matter of time. I was also able to help with one of his dressing changes and it felt amazing to be able to do something for him.

Now for the good! Andrew had a fantastic night last night! His oxygen level in his blood which was only 60's the day before is now over 200, his pulmonary hypertension was at a minimal and they actually weaned some of his vent settings. His chest x-ray looked better this morning- his right lung filled almost the entire side of his right chest, there were no changes with his left lung. The drainage out of his tubes has slowed down and his urine output has picked up! Pumping is going very well- in fact every time we have been completely stressed out by a situation (hearing that he may not qualify for the heart surgery, when they took him to have open heart surgery, when they found the blood clot in his heart that spontaneously disappeared) I have gone immediately to pump over 4 ounces in one sitting! I am hoping that Andrew has inherited my ability to rise to the occasion when under stress and so far it seems that he has! Maybe this has been God's reassuring promise to me that when things look bleak, he knows the final outcome and is still preparing my body for that! The best news yet is that if he keeps up this pace, they will trial him off ECMO on Tuesday!!!!!!! Keep the prayers coming- they are working!

We want to thank you all for the tremendous support you have been for us! We want to thank all the medical staff that has taken such great care of Andrew!!!! We wouldn't be here without each and every one of you and will be forever greatful for your loving and impeccable care!


  1. Bec, I so wish I could be there to help you through this! It's so hard watching you deal with these things and not being there to help. I have been thinking about how God has been preparing you for so long to be Andrew's mom. All that awesome experience in picu in Orlando and I will never forget the day you walked into our apartment and said you wanted to go to grad school at Duke. Little did we know that was the BEST decision you have ever made! I'm in awe of your strength and am so looking forward to the day you get to take Andrew home!!! I'm praying for you, Gene, and Andrew at every available opportunity. All will see how great is our GOD!

    I love you!

  2. Becky, I am SO glad to hear that you are pumping! I was hoping you were. I did when my girl was in PCICU, I felt like it was the one and only thing I could to do eventually help her!! It gave me a purpose. And it was amazing when she was ready for something other than TPN to know that it was my milk she was getting!! In retrospect, pumping every 3 hours was what helped keep me grounded and focused during such a scary time. Keep up the good work!! Andrew will benefit from your efforts in days to come! I hope your supply keeps building, even through all the stress... that's amazing!! The stress eventually got the better of my supply and it tapered off... Take good care of yourself, eat well, stay hydrated and get plenty of sleep. I know it's hard to focus on anything else but Andrew, but he needs his mommy to be in tip top shape too!! I'll be praying that everything keeps moving in the direction of him getting off ECMO Tuesday. My whole family is thinking of your little guy, and wishing the best for him!! God bless!

  3. It's amazing how these tiny cdh babies are so strong. They keep on fighting and fighting. I pray for your baby boy through out the day and continue to do so until he gets to go home.

    Much love,

  4. Thank You God and the heavens above! Lil guy is breaking new ground evey minute! Keep up the fantastic work Andrew!!! We are still in awe of Mommy and Daddy - your strength inspires all. See you tomorrow!!! Mom & Dad

  5. So glad to hear that you had a good night-he sure is a tough little cookie! You all amaze me, I don't know how you are doing so much-Andrew is very blessed to have such wonderful parents! Great job with pumping-it is something that you CAN do for him right now, I know it is tough, but keep it up! I am here if you all need ANYTHING! You are in our prayers . . .


  6. Miracles do happen and Andrew is indeed a miracle. Andrew is so strong-just like his Mom and Dad. You look like the natural you are standing there helping change Andrew's dressing. I'm sure that little Andrew knew his Mom's loving touch. I pray for you guys every day. Much love to you, Gene and Andrew.

  7. We have been praying for you guys and following step by step. We are praying for the good news to continue to come your way.
    Love, Geoff, Caryn and Laura Gardner

  8. I'm so glad Andrew had a good day! We are continuing to pray. Some friends called me for an update,and when I told them how good he was doing you could hear a bunch of cheers in the back ground. We are continuing to pray that God will show everyone his glory....He is just a wonderful baby! Aunt Katie

  9. You three are amazing! From the photograph, it appears Andrew is developing and growing, too. Such a handsome little guy. What a wonderful feeling "holding hands"--those first connections with your baby. Even sedated, his eyes are open! He not only feels you, but you can now look right into eachother's souls. You have prayer partners around the world, concerned and praying. You three are so strong and inspiringly resilient!
    Love, Elizabeth and Larry

  10. Yay!!!! I'm so glad he is doing well! i am also glad to hear that pumping is going well. We will continue to pray for more lung development and less hypertension. you all are amazing parents.

  11. I have been following Andrew for awhile now and eagerly awaited his birth. We will continue to pray for healing for him and strength for you all. We are set to deliver our own CDH baby any day in Dallas. I so much appreciated this post and the reminder not to lose hope and that the journey is not for the weak. Bless you!

  12. This great news about Andrew's progress brings such joy to our hearts! Andrew, Becky and Gene - you folks are amazing. The grace and courage you display on this rough road is downright inspiring. We thank God for the continued miracles in your lives.

    Love and Prayers, Alan & Jeri

  13. Hey Becky& Gene have to tell you little Andrew is as handsome as me now how lucky is that .Keep the faith as this will turn out to be the best time of your life when you can finally take him home to his own room. Love Uncle Ken..

  14. Continuing to keep Andrew, and his Mommy and Daddy in my prayers. May he continue to improve, each and every day. I know in my heart, that Andrew feels your love around him, even if you can't touch him as you would like to. He is such a beautiful baby, and is proving just how strong he is also. Stay strong, and know there are many, many folks praying and sending positive energy your way.

    God Bless you all!
    Dale, from NJ

  15. I'm so grateful for the good news! Thank you God! But I will say that it's so hard to sit back and hear about everything from a distance. I'm always wishing I could be there for you, Gene, and Andrew. But I know that what I'm needed most for right now is praying for you all...and that I am. Love you!

  16. Good Evening:

    Hope all of you get some much needed rest!!
    How about that lung opening up!!

    Look how beautiful he is. Will continue to
    embrace all of you and may each day bring small

    Love to all of you!

  17. You have an amazing strength. God has blessed you with Andrew as he knows the strength you have. I look forward to hearing about the day you get to hold and stimulate the day you bring him home. We're continuing to keep you all in our prayers.

  18. Gene & Becky,

    As strong as you two are, you have given that gift to Andrew. Thank you for posting and letting everyone keep up - that's a very generous gift you are giving others (yet again). God has chosen very wonderful parents for Andrew! Our prayers are with you!

    Vanessa, Gary & Lindsey Southerland

  19. Thank God!! he is doing awesome and he is so cute! we are praying for you ! hugs from LaGrange IN

  20. We're so glad to hear about his expanded R lung and possibly going off ECMO Tues....yay!! Congrats on the pumping...Andrew will have a nice supply waiting for him! Hoping & praying the good news continues to outweigh the scary times.

  21. Your post made me so happy! I can hear the hope and positive "smile" in your words!

    Keep it up little, Andrew! You've got SO many people cheering you on!

    These kiddos are so tough and certainly keep you on your toes-the lows can be so emotionally draining, but remember, there wouldn't be highs, if it weren't for those lows! Not for the weak...that's an understatement! :)

    Cannot wait to hear how he's doing tomorrow! His little body is catching up to all those tough demands and it sounds like that your medical team has a wonderful handle on what EXACTLY needs to be done!

    We're sending LOTS of prayers your way! Love the pictures...he is so cute!!
    Love, L

  22. I pumped like a mad-woman, every 3 hours, because it was the only thing I felt like I could do to help him. I'm happy that you are continuing to do it and hope you will ask to do so bedside once you get back to the ICN.

    I love the picture of Andrew clutching your finger. So sweet!!!!

    We will be praying really hard for Andrew on Tuesday and also stalking you to find out news. Go back to my email about coming off ECMO and you'll see what I mean when he's off of it. :)

  23. You are all amazing and we love you all. Love the pictures!!!! Vern called and I told him about Andrew and asked him to pray for him. He responded " Little Andy I sure will do that".Love Aunt Sandy

  24. We can hear the excitement in your "voice" as you share the good news with us. Our entire community continues to pray for Andrew and for you two as well. God's still in the miracle business ~ proven again, and again. How great is our God!!
    Your friends in Western Maryland