Today has been a troubling and frustrating day for us. Andrew seems comfortable which is good. He still has his awake periods where he is very alert and focuses on us. Gene mentioned that after the trial off ECMO did not go well yesterday, the plan would be to take off more fluid. His doctor wants him to have 500 cc (or ml) more fluid coming out than going in during a 24 hour period in hopes that getting the extra fluid to go away will make it easier for Andrew to breathe and help him to come off ECMO. He has always responded very well to the medication they give to increase his urine output. Starting last night and continuing into today, Andrew's blood pressure has remained fairly low despite starting him on epinephrine and his urine output has decreased and is no longer responding to the medication. In fact, his urine output is usually around 16-20 cc/hr- today he has only had 11cc out total for the last 9 hours. Rather than having more fluid out than in as hoped, he is still positive by 6 cc.
Needless to say, Gene and I are devastated, but are trying to remain positive. His doctors and nurses are just as perplexed as we are. Hopefully, this is just a bump in the road that will resolve sooner rather than later. Thanks for all the prayers and support.
Praise God that Andrew is comfortable and able to see all the love his mom & dad have for him as he focuses on you both. This is a precious time. We are lifting our eyes off the circumstances to the One who can change these circumstances, and praying for divine intervention on Andrew's behalf, for strength, love and peace of mind and heart for you and Gene and wisdom for the medical team.
ReplyDeleteKeep looking up - remember Isaiah 41:10 "Fear not, for I am with you, be not dismayed, for I am your God,I will strengthen you, Yes, I will help you, I will UPHOLD YOU with My righteous right hand."
Love and prayers continually,
Mom & Tom
Hang in there! From personal experience (and several "bumps in the road"-- There were several days on ECMO where M was positive 100cc or 150cc. There were also times the Lasix would make him produce lots of urine, and days where he did better without. The surgeons went constantly back and forth with the neonatologists about what made his output better-he'd get Lasix some days, and then they would hold it other days. It was a mystery to them! The "I and O's" great debate happened many, many times, so don't be discouraged. Enjoy every second where he is awake and alert- I am so glad he is comfortable! Also, remember to cherish every second where he's resting peacefully and you can just sit and stare at your little miracle! :) I will send lots of "pee prayers" your way! Hopefully he will suprise everyone and lots will show up ALL AT ONCE! (Again, I'm speaking from personal experience!) M was famous for that! :)
ReplyDeleteHugs, L
You are in my prayers without ceasing. LuAnne
ReplyDeleteI am so thankful for the other CDH parents who post about their experiences. For those of us who are new to learning about CDH it really helps. Continuing to pray for your little miracle at every chance I get. You can see in his eyes that he really loves his mommy and daddy!
ReplyDeleteLove,
Robin
Praying for you all.
ReplyDeleteLove Aunt Sandy
Prayers still coming...Love, Lynn
ReplyDeleteMore & even more prayers.
ReplyDeleteLove you all,
mom & dad
Praying right now.
ReplyDeleteBillie B
I know that it will not surprise you one bit, but doctors don't know everything - they just think they do. I know that they are doing what they think in the best for Andrew, but we know the real Great Physician who has Andrew on His treatment plan. I have added Andrew to the prayer chain at one of my best friend's church and as always, we pray for him without ceasing. We are also praying for you and Gene. I know you must be exhausted so take care of yourselves as well. Keep us posted...I check this site at least 6-8 times a day. Love you, Marian
ReplyDeleteAndrew, Andrew, precious you be
ReplyDeleteAndrew, Andrew, you must pee
Keeping you each in our prayers,
Elizabeth and Larry
Andrew is a little sweetheart! Glad that he is comfortable, and very aware that his mommy and daddy are right beside him. We are praying that the fluid output will increase.
ReplyDeleteWith love and continued prayers, Alan & Jeri
You are such a strong family! We remain impressed with how well you are handling these unbelievably trying days. Sending love and prayers. Andrew is SOOO cute...love seeing all the pix.
ReplyDeleteUrine output- makes me wonder. K had that issue twice while in the NICU .. and she had the catheter put in both times. It helped and she had it out within the same day. However, we don't have that luxury here at home.. and some mornings, she will wake up with a completely dry diaper. Worries me for sure, but makes up for it during the day... don't know if it is the same though seeing how she is not full of fluids. So that may be completely useless to you. :)
ReplyDeleteIt is sometimes very hard to stay positive when they hit a little bump. But it is necessary for your sanity! He will pull through this! He is strong just like his parents- at least he has proven to be! :)
Love the pictures!! He has a TON more hair than K has!! :)
We're praying at this very moment, and I am sending around the country right now to those I know to pray at this time also - hang in there Andrew - you're a fighter!! Pee, baby pee!!!
ReplyDeleteIsaiah 41:10 "Fear not, for I am with you, be not dismayed, for I am your God,I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand."
Trust in God!
Tim, Donna, Alex, and Lawren
I am praying for your beautiful baby boy. My son was also LCDH and on ECMO. It certainly is a wild ride. I will keep your family in my thoughts and prayers. Stay strong and make sure to take good care of yourselves too (get sleep and food when you can!).
ReplyDeleteVicki
mom to Jack (a happy 26 month old)
www.babyjackjensen.blogspot.com
Keeping you in our prayers. Andrew keep fighting. Praying that you pee
ReplyDeleteContinuing to pray for Andrew daily. Many people that do not know you or Gene are praying for Andrew everyday. Take care of yourselves because Andrew is going to need his mommy & daddy to be strong for him.
ReplyDeletePee Andrew pee!!!
ReplyDeleteContinued prayers for Andrew. Hopefully his body will start riding itself of the extra fluid and his blood pressure will rise to a normal level. He is too cute!!
ReplyDeleteCarePages:Emilyishere
Continuing to pray for Andrew, that all the bumps in the road, will resolve themselves, and he will be able to come off the ECMO, very soon. Even with all the tubes and wires, he is a beautiful baby boy, and you can see that determined look in his eyes. May God stay by his side, and help him overcome his fluid problem, as well as give you both strength.
ReplyDeleteDale from NJ
Hoping Andrew will still producing more urine and get to the level where he should be and come off ECMO as soon as possible. Thinking of you and your family.
ReplyDeleteThe Moore Family, Australia.
He is so beautiful. I love the new picture. He has quite a determined look. It is so good to hear that he is comfortable and that he has his awake moments. Take the bumps one at a time and hopefully soon the road you are now traveling will become easier. Hug and kisses.
ReplyDeleteLove,
Paula
Andrew is in our thoughts and prayers. I will post a prayer request on Wyatt's blog. Wyatt was on ECMO for 13 days and failed his trail a few times. You are wonderful parents!
ReplyDeleteGina
www.wyattjameskoger.blogspot.com
We are continuing to pray for Andrew. Hang in there guys!
ReplyDeleteJust love his beautiful little face!!
ReplyDeleteI am sure that Andrew is just wondering what is going on.
We ask "God" for many things, and we can certainly ask that Andrew be able to push that
water out!!! Our family is thinking of you all this day, please take a breath and know that
many continue to hold you close.
Have a peaceful day sweet Andrew!!
Hoping and praying that little Andrew is having a better day today. Pee kidneys, pee! Hang in there, we love you guys!
ReplyDeleteCathy and Chris
Just caught eye on your blog. My son was born Oct 14th. He went on ecmo after about 13 hours on the vent. Its been real tough but our CDH babies are little warriors. I hope the best for Andrew and will be keeping an eye on your blog. Many prayers. God bless!
ReplyDeleteHaven't posted in a while, but please know that we pray for you at least daily. I know that today was an extra hard day for you with Harley's passing. It is hard to know why God lets things like this happen, but remember that while his plan is often hard for us to understand on this Earth now, God is good, and the beauty in everything he does will someday be revealed for all of those who believe. Keep your faith and stay positive. Be strong, but also know when to be weak. I know that we all struggle not being able to do more for you, but please know that we are here for you and we are praying for you. Steve and Lisa
ReplyDeleteP.S. He is such a handsome little guy.
ReplyDeleteGosh, even under all that....he is SOOOO CUTE. OH MY GOODNESS. :)
ReplyDelete