Thursday, January 13, 2011

One Step at a Time

First of all, thanks to my sister, and to Kate, and all others who helped to keep everyone updated yesterday. It is so encouraging and comforting to see all of the support and loving words everyone has shared.

A QUICK RECAP OF RAMSEY'S CURRENT STATUS:
They are waiting to see what his condition is today and tomorrow as what they call the "honeymoon phase" ends . (Usually CDH babies have a day or two when their condition looks really promising known as the honeymoon phase). Then, I believe they will try either surgery for the hernia repair, or ECMO. Based on what I've learned, I think it would be great news if they feel he is up for the surgery. ECMO is more of a last resort option which has saved a lot of babies, but can also have negative results such as clotting, or brain damage. Ramsey is highly sedated and on oxygen and other types of support to give him a rest. They are adjusting these measures to see how much he can comfortably handle on his own.

MY LONG RECAP OF YESTERDAY'S EVENTS:
If you've been following the blog, you know that I have, with the help of God and everyone's support, been surprisingly strong and hopeful for the best for Ramsey. Even when I wasn't feeling so strong, I never really expressed it; I wanted to keep my postings optimistic because that's just who I am. I am still strong and optimistic, but bear with me if this time, I share more of the emotions that I am feeling now.

As you know, they started to induce me Wednesday around midnight. Things progressed slowly. They said I could have an epidural at any time, and I was surprised that I didn't need it. By early morning, they stopped the Pitocin because the baby's heart rate was decreasing. They tried the Pitocin two more times, breaking my water after the second time. Because they felt that each contraction was putting too much pressure on the baby, (possibly caused by the cord), they gave me an epidural prior to the third Pitocin attempt. That way, I was ready for a C-section if needed. They turned off the third Pitocin quickly and at that point, even I was ready for the cesarean.  It went quickly as expected and they showed us Ramsey before taking him straight to West Penn's NICU.

Dennis and my mother were the first to visit little Ramsey while I was in recovery. Next they brought Dennis and I to the nursery to see him before he was transferred to Children's.  Before seeing him, we were approached by a fellow (doctor in training to be a specialist at Children's). Unfortunately, her attitude did not match my optimistic nature. She said things were much worse than we thought, that he only had a small sliver of lung on the right side and no lung on the left (based on XRAYS) . She basically said that there was nothing we could do..that ECMO would not benefit him....that it would only extend his life. She wanted us to decide whether to transfer him to Children's (CHP) as planned, or " let him die" with us here at West Penn.  She felt he wouldn't survive the transfer to CHP and gave us all the impression that no matter what he would die. It seemed implied that we were merely choosing if he should die alone at Children's or die with us at West Penn. Initially, we took her word for it thinking it was just the facts when actually it was her opinion.
One of Ramsey's first photos, taken at West Penn Hospital

Dennis (Daddy) and Ramsey


Since the moment we learned about Ramsey's CDH at 19 weeks, life has felt like a bad dream. Believing it was all going to end that quickly was a nightmare. I tearfully met Ramsey for the first time, with Dennis by my side and a room fool of other's who joined us in tears. We weren't allowed to hold him, just gently touch him. I sat and talked to him, trying to find all the right words to say...that I love him and want him to fight, but that it was OK to go Heaven if he had to....that there are so many people who love and are praying for him. That his big brother Reed loves him and can't wait to meet him.....

We baptized him along with the help of one of West Penn's wonderful nurses and placed a few special trinkets alongside him. We decided that we owed it to him to try and save him by sending him to Children's. Thank God we made that decision.  Once Ramsey and the team from Children's left the room, we were approached by a West Penn employee who said that the opinion of the fellow we spoke to from Children's was just that...an opinion (from someone who is still in training). She stressed that we made the right decision to let the surgeons determine what Ramsey's condition was. As you can see from the above update on Ramsey, things are still going to be a challenge, but they are not nearly as grim as she made them seem. He made it to Children's, he may even make it to surgery and someday, I hope he can make it home!

We'll keep taking it one day at a time, following Ramsey's lead. He's a fighter and with all of us on his side I don't think he'll give up too easily!!

19 comments:

  1. Shane, Kylie and ChaseJanuary 13, 2011 at 2:13 PM

    Lisa, I don't know what to say. Our hearts all break for you and Dennis. God has blessed Ramsey with the most amazing family. You have examplified God's grace and love through the last several weeks. I am honored that you have chosen to share such intimate feelings and experiences with us. We will not cease in our prayers for Ramsey and your family. God is in Control.

    ReplyDelete
  2. Jim, Heather, Brodey, Zachrey, and LexeeJanuary 13, 2011 at 2:31 PM

    Stay strong...We continue to pray for strength and comfort for Ramsey and your family!

    ReplyDelete
  3. You are a beautiful and loving family and I know you love little Ramsey with every fibre of your being. I know too that God is in the midst of all of this and He will provide what you need one day, one hour, one minute, one moment at a time. I have been blessed to have been included in your postings and thank God for "FaithBook" a place where we share our hopes and our dreams . .. and of ocurse, our faith. You all remain in our prayers. We simply have to let God be God. AMEN

    ReplyDelete
  4. I too wish I knew what to say. Just sending prayers for Ramsey and for you and Dennis and the rest of the family.

    ReplyDelete
  5. I've been following your story via Tricia Thomas and am just praying that little Ramsey fights his hardest with the help of God. I'm also praying for your family in this hard time. I can't imagine what you're going through. Just know you're all in good hands (God's hands)!

    ReplyDelete
  6. Hi,

    I followed the link from Olivia's page. My Ruby is a LCDH and ECMO (26 days) baby. You all are in our thoughts.

    Love,
    Holly, Chris, and Ruby
    www.rubyhope.com

    ReplyDelete
  7. Oh I am so glad to hear that Ramsey is even doing better than I thought! I thought he was already on ECMO, which my Dakota was at this point, and she survived beautifully. But it is even better that he is stabile not on ECMO and they are working on lowering his settings! Way to go Ramsey!
    I am so angry at that Fellow on your behalf!!! I never had to face a single person on my journey who told me that my baby would not survive, and that was even with Dakota being born at the wrong hospital more than 7 weeks early and needing to be transported by plane to a hospital 5 hours from where she was born. I know that is not the norm, but I am so grateful for that. I pray that no other doctor you meet will ever believe that Ramsey can't make it! Keep your hope and spirits up as much as possible! I know it is so hard! Many prayers for as smooth a journey as possible for Mr. Ramsey!
    Hugs,
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH survivor

    ReplyDelete
  8. Lisa,
    You and Ramsey have been on the forefront of my thoughts for many days. There are no intelligent words that I can offer - only encouragement in telling you again and again that I am praying and feeling very connected to this great big soul living inside little baby Ramsey. So many people from the prayer chain have asked me about him today, people you will most likely never meet, but they too feel connected to him and pray for his sweet and precious life.

    Jeremiah 29:11-14 "I know the plans I have for you," declares the Lord. "plans to prosper you and not to harm you, plans to give you hope and a future." Remember that God owns time. Though we rarely understand His reasons, He knows why He allows pain and suffering to continue. And He knows the day, the hour, and the precise minute - when our lives will change and the moment by moment fear you live in will cease. He knows what He has in store for you at that time. As difficult as it is to imagine now, this is true. God has plans for you, Dennis, Reed and for Ramsey. And because He is God, His plans are always good. Hang in there....Hugs, Tracy Vrban

    ReplyDelete
  9. Lisa...been praying so hard my head hurts. You and Ramsey are in my thoughts constantly and I will continue to pray for his recovery. As far as the resident doctor in training....I would have had two words for her and they would have not been "Merry Christmas"!!! I love you....rox

    ReplyDelete
  10. Ah - you know the old addage of "good cop/bad cop"? Well there are good doctor/bad doctor and nurses too. Though a majority of those in ICUs are good - you occasionally run into "one". I'm sorry you got that "opinion" - but when Ramsey is two and screaming - look her up and hand him the phone ;)!

    Keeping you all in my thoughts, prayers and Lung Function chants - go with that gut/heart combo - it is always right!
    Elizabeth

    ReplyDelete
  11. Lisa, Dennis & our strong little Ramsey--- just wanted to let you know that we are praying so hard for you guys. I admire your courage and strength at a time like this. I'm sure that your beautiful baby boy feels all that strength and love that you guys have and with that,he can hopefully continue to get stronger everyday.please know that we are here for you guys and we will do anything we can to help. God Bless you and keep you in his everlasting love. We love you. Take care. Aunt Ro.

    ReplyDelete
  12. We continue to send love your way! Just keep those positive thoughts going. Go Ramsey go!
    xo
    Megan, Jason and Olivia Cheek

    ReplyDelete
  13. I have been following your journey and praying for Ramsey. One of the many things I learned on our CDH journey was that you just keep fighting for what you think your baby needs. I wish I could have a "word" with your fellow, my nurses usually steered me straight so get all the info. you can from them, they are with your baby round the clock and always know how to get things done in the NICU.
    I will pray for you as you now ride "the CDH roller coaster". We had so many up's then down's with the most excellent outcome! My little RCDH Warrior will be 1 next month and is the picture of health, even after being told he had very underdeveloped lungs (wait for the surgeon to tell you what his lungs look like).

    Praying for you,

    Jennifer Holmes
    Mom to Charlie RCDH Warrior!!!

    ReplyDelete
  14. You are all in our thoughts and prayers...good luck with the surgery and everything. We all cant wait to see little Ramsey. Wont be long he will be running around the yard with Reed!
    -love the Hudson Family! :)

    ReplyDelete
  15. Thank you so much for the update! We will have our part of Southern California covering you in prayer!!! Little Ramsey, you and your family will be in our thoughts and prayers daily. I can not even imagine what y'all are going thru. And, I just pray that God gives you strength, and comfort that it is in his hands. And, that in reality he is in total control... and no matter what the out come is your lil' man will be well taken care of!! I pray that he is home with you soon!

    ReplyDelete
  16. May God's incredible love be with you and upon you. Perfect love casts out fear and Christ's love for you is perfect. His love for Ramsey is perfect.

    Marie and I pray for each you everyday. We pray for you to be encouraged and strengthened. You have been an encouragement to us. Your faith has made you strong and it will not fail you.

    Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

    ReplyDelete
  17. Thanks to everyone for their beautiful comments...we appreciate your support and we are strengthened knowing each of you are Rooting for Ramsey!

    ReplyDelete
  18. God bless you and Dennis and little Ramsey. Thank you to my cousin Dana O'Barto for sharing this with me so I can put your family on my daily prayer list. Keep strong, Mommy and Daddy, but don't be afraid to let us see your sadness, those who pray for you have room to embrace you whether you are strong or sad.

    ReplyDelete
  19. I have been following your blog through the working moms's group and am praying for you and Ramsey.

    ReplyDelete