The Valley

Wow, yesterday was rough. Joey and I barely made it out alive. Finn, however, remained strong post-op: even temperature, no breathing tubes, steady heart rate, soft whimpers, small sticky bowel movements and pain medicine-induced stupors.

The day began early with visits by my doctor, the nurse’s assistant (who checks my temperature every three hours…it’s really fun), the all-too-chipper nurse, someone wanting me to fill out a hospital survey, the overzealous lactation consultant, the housekeeper, room service, friends and two visits by the urologists who insisted we should not maintain hope that Finn will pee on his own…”All SB children need cathing or surgery. Yours will be no exception.” All this before 11:00am. Our parents said their goodbyes and we were on our own.

A little respite came as I got to enjoy “skin time” with Finn. In a recliner next to his NICU crib, they laid him on my bare chest, covered us in blankets and we reveled in an hour of human contact. Although I had to stroke his back amidst all the tubes and bandages, his skin was soft and warm and I felt a little like a mommy. Joey’s turn for skin time came later that night…and Finn didn’t even complain about all daddy’s chest hair.

This beautiful experience with Finn was quickly interrupted as the neonatologist requested our presence in a conference room. We expected a debriefing on Finn’s progress, but instead were drilled with questions about family history and our lifestyle habits. The purpose of the meeting soon became clear: “After reviewing Finn’s CAT scan and analyzing his severe case of hydrocephalus (fluid on the brain), you should expect some degree of mental retardation. It may be mild. It may be quite severe, but it will be present. After watching you visit him, I got the impression that you had no idea of his mental challenges and felt you needed to know the truth.” He showed us the CAT scan to “prove” Finn’s demise.

What?!

Joey wheeled me to our room in silence. The all-too-familiar sobs began. For five months we have been preparing ourselves for Spina Bifida, a neural tube defect that affects everything below the lesion in the spine and sometimes implies developmental delays or learning disabilities due to hydrocephalus. We were prepared for the possibility of math tutors, speech pathologists…not severe mental retardation. We felt like we were starting at the beginning. Like this was a whole new prognosis. Not only will Finn be unable to walk, pee, poop or stand on his own, he may not be able to engage in relationship with us? He may not be coherent enough to communicate? He won’t be capable of making friends?

Too much. Too overwhelming. More than we could handle (Yes, I believe God often gives us more than we can handle…not more than He can handle, but friends, this is MORE than we can handle.)

We were numb; in shock. We were in the valley and there was no way out.

We called our doctor, the neurosurgeons and the nurses for a second opinion, but could reach no one. A sleepless, hopeless night ensued. I’m glad Feb. 29th only comes around every four years.

This morning, we awoke at 5:00am for some more “skin time” with Finn. Somehow things are better in his presence. We met with the neurosurgeons when they came by for their rounds and told them about yesterday’s interaction with the neonatologist. They were more hopeful, as they perform these surgeries for a living and see all kinds of cases and miracles (whether they acknowledge them as such or not). They reassured us that though there may be some developmental delays or learning disabilities for Finn due to the amount of pressure on his brain, there is no guarantee of any brain damage. They warned us not to look so far down the road, to take it a day at a time and not to worry about the mental challenges that may lie ahead. Our specialist came by later to check my incision and he said basically the same thing: that everything is unpredictable at this point and that Finn’s shunt surgery tomorrow will help release the pressure and drain the fluid on his brain. Only 10-15% of SB children experience some form of mental issues. Things aren’t so grim. They could be, but it isn’t guaranteed. Especially when The Healer is involved.

Please pray these things with us:

-Finn’s brain drains properly and completely tomorrow as a result of the brain shunt surgery

-The shunt is placed correctly and a revision is not necessary

-Finn’s brain matter expands, giving him all he needs for communication, comprehension and critical thinking

-Finn’s head compresses back to normal size

-Finn’s legs begin to move

-The doctors are coherent and precise during surgery

-Peace comes “like a river” for Joey and I. Though we are trying to remain hopeful, our faith is fragile.

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34 thoughts on “The Valley

  1. Oh what a crap day. I am so sorry. You have shared so well your thoughts and emotions. We don’t deserve to get a peek in on what you are feeling, but guys…as the body of Christ I believe being able to read your honest thoughts is so helpful so that we know how to pray and how to walk through this with you. And quite honestly it makes me want to poke someone’s eyes out!! I hate that what that Dr saw as the “truth” was delivered in such a horrible manner and as if it was without doubt going to happen. So thankful you all asked for more information from others you trusted. I love how much peace comes thru that little man. Love you guys….and this incredible Finn.

  2. thank you for giving us specifics to pray for. we will. your family has been on my heart constantly. we will continue to pray for complete miraculous healing, knowing that finn can be the “exception”. we will also continue to trust that God will give you, Joey and Finn, everything you need to get through this valley.

  3. Your precious baby and your beautiful family are bathed in SO much prayer right now that it only seems fitting that the enemy would come to steal, kill and destroy. And good grief – did he try! God is going to do Big things in Finn’s little body. Big Big Things.

  4. You do a tremendous job explaining Finn’s status. Your love and concern is radiated throughout your updates. It’s tough to do, but taking one step at a time in a journey is much less stressful than to look ahead at the whole trip – that’s overwhelming. And nobody but God knows where the journey will go or end. Enjoying your time with Finn, loving him, taking one day at a time and doing what you need to do with his best interests in mind is about all you can do. Never give up hope – because miracles DO happen. This gives a vivid reality to the phrase “lean on the Lord”. My heart is sad knowing how diffucult this all must be for you. Know that you have friends and family loving you, supporting and praying for Finn, his Mommy and Daddy.

  5. “Skin time” what a difference life makes when you get skin time with Finn. The expression on y’alls faces just melts my heart. I agree with Molly’s comment above, makes me want to scratch out somebody’s eyes. Thanks for the ways to pray.

  6. Joey and Ash- I’ve printed out your specific requests and will be praying them throughout the day. Cried as I read about the discouraging day you had yesterday. I’ve become so attached to sweet Finn through the pictures you’ve shown…he is breathtakingly beautiful. I can’t even begin to imagine the love that God has for him. Praying that just as you experience the overwhelming amount of love and desire to protect your baby boy that you’ll also be reminded of the even greater love that our Heavenly Father has for Finn and for you both. Love you three.

  7. Ashley, I so appreciate your updates on your family. What a treasure we have to know how, when, and what to pray. Your ability to guve us a glimpse into your family’s life amazes me.
    I am shaking those bad bedside manner doctors in my head. So proud of you guys willingness to get a second opinion and not settle for what they say as truth. Finn has already given me reassurance in miracles!! Praise that he was a trooper in surgery and even post. Your boy is strong just like his mama.

  8. Praying for big miracles and overwhelming peace and understanding for your little family. Thanks for keeping us updated via your blog. Also, glad to see Joey’s reading The Hunger Games 🙂

    “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. ” Eph. 3:20-21

  9. Love you three so much, and am constantly praying. Please know this. We think of you all often and you are so close to our hearts and all of our prayers. Love, love, love.

  10. The Cherry Family is praying for Finn, his loving parents, and all of his doctors. He is beautiful!
    Just wanted to let you know that I am at Children’s every work day. I don’t want to intrude or drop by at an inopportune time, but want to let you know that I am here close and if you need anything at all (non-cafeteria food, something brought up from home, someone to talk to while the other runs an errand, whatever) just ask. You can reach me at 229-9346 if I don’t answer, it’s because I am with a patient, leave a message and I will get back to you.

  11. I TOTALLY echo everything Molly said! Thank you so much for sharing these intimate thoughts and feelings as they’re happening. You are being bathed in prayer and as these days go by rest in those when you can’t rest in anything else. Love you guys and I’m praying for you guys often!

  12. God is there with you guys throught all of this I know deep in my heart he will never leave you. He is going to heal baby Finn hundread precent I believe in that, You guys have prayers heading your way you guys can fight this and don’t give up. I know how you guys feeI I been throught this everyone is behind you guys all the way. God is mighty and powerful. Just keep on fighting

  13. I share your concern and yes, hope, for the future. I know you and Joey are so close to our Father and He is definitely watching over you three. He knows your every concern, hears your every prayers, and sees your every shed tear…..but you both know this as well as I.

    God bless you and your family as those who also are praying for the very best for you and your little man!

  14. Oh Ashley, thank you so much for letting us in on your day and everything that you and Joey are feeling and going through, Finn is so perfect! I will be praying specifically for Finn’s surgery tomorrow and that God would do miracles that even the doctors can not explain. You three are so so loved.

  15. Finn is a beautiful baby. Holding him, smelling him, those are the best moments. We love the whole Armstrong family!

    Steve, Shelley & Graeme Wilson

  16. Praying so much for you guys over these past few days! Finn is so beautiful, and you both are going to be such amazing parents to him. Praying that our Healer will wrap him in His arms and do things in and through Finn that bring so much glory to Him!!!

  17. What a beautiful family God has made. Finn is so cute! You both are going to be the best parents this little one could possibly have, and you have such a great Father holding you all in His hands, who truly knows and understands everything you are going through and the road ahead.

    We love you guys and are praying with and for you.

    The McCalebs

  18. My heart goes out to you all. Some doctors just plain make me mad with their lack of reasonable sensitivity. So thankful some others came a long to give a take one day at a time attitude. Praying for peace like a river, steady, careful surgeon hands, proper placement and good drainage got the shunt.
    Love,
    Linda

  19. Ashley,
    My heart hurts for you and your family for having to endure so many obstacles. You have always been so beautiful, inside and out, and so is Finn. He is a blessing to this Earth, no matter the difficulties he might face. I am praying hard for you all and keeping you close to my heart! Congratulations on your handsome little man!

    xoxo for Finn and mommy!

  20. Thank you so much for the updates and for sharing your heart as Finn’s parents. We are contending for Finn, for everything on your list and we are claiming it in the mighty name of Jesus! What a blessed little one he is for having such incredible parents like you and Joey! I feel like Finn is already a man after God’s heart, that he has the heart of David. A warrior. A fighter. Strong and steady. We are contending he will slay the giant and be victorious! What an amazing little guy he is! Love you Ashley, praying you rest well tonight.

  21. Ashley and Joey, know that you are not alone in questioning and doubting and fearing the future and even God’s grace and goodness. Good friends of mine had a similar experience with a special needs son a couple of years ago. They too had high expectations and hopes for their first born, and their reality was very different. They blogged their experience and it is a testament to the hard times of faith and finding hope and great joy in God’s provision. You can find it at http://www.sweetbabyjames.info/. I know that we barely know each other, so this recommendation may seem unusual or untoward, but it is heartfelt. I don’t know if knowing of their experience will give you hope or not, but perhaps you will find a bit of encouragement in God’s love.
    Praying,
    Ginger Elliott-Teague

  22. Continuing to pray for you three, specifically for peace and hope. Nothing about the NICU is easy, that I know from plenty of experience, so I can’t imagine the NICU with your other complications. Praying you’re surrounded by a sea of peace today and in the days to come.

  23. Know we are praying! I’m so sorry that you had to listen to doctors who were so insensitive to all God can do AND felt the need to paint such a picture! Thankful for your doctors who gave clarity and hope for each day! We continue to pray for each of you… We so look forward to seeing Finn!!

  24. We are praying for you and Joey. We are praying that you get to experience more of those moments when you get to just be Finn’s mom. We are praying for the doctors as they do his surgery today. We will also pray that they are bearers of hope for you. We will also pray for that good-looking little boy, Finn. We will pray that he continues to fight with a strength greater than most newborns have and that he will be able to rest on your chests or in his bed.

  25. Dear Joey and Ashley,
    Leah and Tyler, friends of mine in MA, have shared your blog with me. As I read your story, my heart hurts for you and your dear, sweet boy so vulnerable and yet full of hope and life (an invincible summer!), and though it may not mean much coming from someone you don’t know, you are such a brave family, all three of you. Finn’s name is on our fridge and we are praying.

  26. I am a coworker of Ritchie Beason he told me about little Finn, my heart goes to you and your husband. My husband and I were in the same situation with our first child Nolan he is now 27, was born with L4 L5 SB, so I know what you are going through. If you ever need information or to talk about the experience. Just contact Ritchie or you can contact me with my email.

  27. Ashley & Joey, we are praying prayers of complete healing for sweet Finn and peace for the two of you. What an absolutely beautiful little boy you have :). We love you all! Thank you for sharing your journey with us.

  28. I have been in the valley several times. I will pray with you as you walk through it. Please let me encourage you…you will not stay in the valley forever. Just keep walking. Your doctors were right to tell you to take it one day at a time. Worry robs you of today, it doesn’t change the future. Lean on your friends and our God and just keep walking.

  29. I hope to never write anything that sounds remotely “tidy” on your blog. For sure, I will never have anything “tidy” to say, so if something looks that way in my responses, just know that it’s an accident.

    Having said that, you two are our heroes. We don’t say that because you’re standing above the valley, looking down smugly after conquering it…we say that because you’re IN it now, and you’re real enough to turn back and tell us that it’s dark there where you’re walking, and you don’t know the way out just yet.

    We love you two, and thank you for being that real.

    Like Molly said, it’s probably more in our instinct to stay inside ourselves and not write about it, but you break the mold. So many prayers are lifted up for the three of you every day.

  30. We are praying all the time — for you three individually and together, and also for Finn’s doctors and nurses.

  31. Pingback: Living the Adventure | our invincible summers

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