Disappointment
May 26, 2011 I’m not sure quite exactly how I would describe the frustration that we felt when we received a phone call from the nurse to update us a few nights ago. I’m not mad at anyone, I don’t feel bitterness towards any of the doctors or other medical professionals…I’m simply disappointed. Imagine one night, the doctors claim that the most major problem facing you week old son has vanished. The lymphatic duct leakage (chylothorax) has ceased and they will be removing the tube in the morning. The next day you get a call saying that they’ve found more drainage in his chest cavity and that it looks like the chest tube had simply clogged up and was not draining properly. That very same night you head home as they poke another hole in your little boy to make room for another chest tube. Disappointed.
I feel down but not out. The good news and the other areas of recovery have certainly outweighed this setback. God still gets the credit for a miracle because according to the doctors Holden shouldn’t have made it out of the womb alive. In the past week (Holden’s two week birthday was today) we’ve found out that his brain ventricles that were enlarged are now normal, he’s been taken off of blood pressure medication, they’ve taken him off of the morphine drip, he’s gone from an oscillator to a ventilator to now breathing on his own (with just a little oxygen in the nose), he’s starting on formula and of course we just got to hear him cry for the first time today. For each one of these “victories” we’re very grateful.
Today was the first day that Cheryl actually got to hold Holden. With all of the tubes and lines that are hooked up to him, it isn’t easy to maneuver the little guy around very much but I’m so glad they allowed her to do this. It was surreal. I could see Holden immediately feel at such a peace in his mother’s arms. When several months ago, and even two weeks ago, you didn’t know if this would be possible, it really meant something to special to us.
I wish this was more of a “positive” post and that I was rejoicing in the miraculous like last time. We realize that Holden still has some work to do and there some things that still need to happen in his little body, mainly the lymphatic duct healing. The doctors have remained positive and say that there is a good chance that his body will heal the duct itself, but it takes time. We’re trying to be patient and count the blessings.
If this fight was for me, I don’t know if I would still be in it. The emotional, physical and spiritual toll it has taken is immense. There is just something in me that has to keep going for little Holden. Every time I see him, I’m renewed. Every time I think of how much he is depending on us right now, I feel restored.
I’ve been thinking quite a bit about the Scriptures lately and I’m thankful for the strength they bring to us in this time. There is one passage that has struck me and I feel like I should share it, especially for anyone struggling with anything right now. Psalm 121:1-2 “I lift my eyes up to the hills, where does my help come from? My help comes from the Lord, the maker of heaven and earth.” If you look at the original Hebrew of this scripture, you’ll see that the psalmist actually posed a question: “do I look to the hills for my help to come?” I believe the writer was trying to pen a statement that says something to the extent that: when men fail us, when we look all around and even to the highest points around us, even to the places we trust…we’re sure to be disappointed. Instead, we look to God, we look beyond things which can be seen and we look to a God who made those things. Herein, I find my peace and my comfort.
Once again, thank you to everyone who has been so supportive during this time. We truly wish that there was some way to communicate our appreciation to everyone. Thank you. Keep praying for Holden. Enjoy.
Albert Villanueva: He's beautiful. Keep the faith. I'm looking forward to holding your miracle. One love.
Allison @ Engaged & Inspired: Those are definitely some great accomplishments, and some is better than none. I wish you, your family and Holden the best for an incredible recovery and hopefully a "take home" soon! He's amazing and such a fighter :)
Bethany Belle: What a precious gift he is and glory to God for everything he is doing. Little Holden and your family will be in my prayers. The photos of him in her arms are absolutely stunning, you can see how peaceful he is in her arms, it is so clear on his face that he feels secure and loved :)
Jennifer Skog: Oh Scott I'm so sorry you and your family have to go through this, but he is worth it all! Hang in there little sweetie! You have a family that loves you very much!
Lara rios: I'll keep praying for you all, keep that faith that your baby is gonna be a happy healthy and loved baby :)
Jen Harris: Praying for you all. Big hugs to everyone.
Summer Schexnayder: Scott, thanks for keeping us updated...we are praying everyday for you, Cheryl and your sweet baby boy...we love you :)
Trent: scott....many prayers for holden
Heather Brooks: He is so cute! The picture where cheryl is holding him u can see his big smile he's a little fighter n everything will b ok! Luv u all!
Adrienne: Happy 2 week Birthday Holden. Tears of joy for Cheryl being about to hold your baby boy. My continued prayers and support from the east coast. You and your family have not left my mind and heart. Much love.
Jill Johnson: There are never the right words at times like this but know that your son and your family are being lifted in prayer. May you feel his comfort and keep leaning on the mighty one.
Bobby Earle: I teared up when I got to the photos after reading the blog post (that's my version of balling). Cheryl looks absolutely beautiful holding Holden. I hate that you guys are going through this but I thank God that he has built you into a man that is seeing it the way you are. Blessings and prayers for your family, Scott. Holden is going to love looking back at these stories :)
Arren: Oh Scott, my heart goes out to you and the family.I must say though, it is so beautiful to read how you express your faith in the Lord. I will continue to pray for Holden and you guys. The pictures of Cheryl and Holden are simply magical. He just looks so peaceful laying there in his mommas arms. Look at how much love all these people have for your angel. :) He is already so very loved and I just know he can feel it. Keep fighting Holden, there are too many people that want to meet you and hold a true miracle of the Lord. Hang in there Scott.
Jamie Robinson: Thoughts and prayers are with your family!
Chris Stewart: Hey Scott I just finished this post about Holden and my heart goes out to your family still. You guys have been on my mind and a part of my prayer journal each day. Its so amazing to see what God is doing within your family even though its still a battle right now. Jen and I went through something similar with Regan when he was born so when I see the photos you post i am brought back to that moment. We will continue to pray for your family and know that God will bring you all through this and make you all stronger.
Aron Goss: In our prayers my friend.
Tena: Your photos are beautiful. Your writing is beautiful. Your family is beautiful. God is the only One who makes anything beautiful. ~Daily thoughts, prayers and love from me, Tena.
Tim Sarquis: My heart aches for holden and your family Scott. Those last two images of Cheryl and Holden are really beautiful. There's something so amazing about seeing a mother and her child together. Au and I are still here for your family, whatever you need!
Tanja Lippert: Praying for little Holden, he is so sweet. Hang in there and trust that God has a majestic plan that he is working and Holden and your whole family are all part of the miraculousness of it. Keep us posted and meanwhile, we will wait on God's miracles at work. Love to you and your family, Tanja
Tracy: Your family is always in our thoughts and prayers. You have been a rock for your family and continue to impress us all as you help make it possible for Holden to get through this. He is a fighter and WILL carry so that he can go home soon;)
Lori Paladino: Just read your update, and continuing to send you all prayers of love and strength and healing for Holden. He's just beautiful.
Shirley Buxton: Scott, you are an amazing artist, both with words and with your camera. I am distressed for all of you, and especially for Baby Holden. You impress me though with your expression of faith in God, and your pointing to Scripture that is so apt for this time in your life. Bless you. All of you. Much love from the Buxtons here in Crestline.
Cathy (and David): Keeping you guys in our thoughts and prayers. He's such a handsome little guy, and I'm hoping he'll be going home in your arms soon!
Bettina madsen: We're praying for you guys!! God is helping you through this! Holden is adorable!!
brianna phelan: I just found your blog tonight for the first time - this spoke to my heart. Wishing you and family many blessings.
Sheila: I came across your blog. I don't know you but my heart goes out to you and your family. I said a prayer for Holden. He will get better very soon. God Bless.