"When I am afraid, I will trust in you. In God, whose word I praise, in God I trust: I will not be afraid. What can mortal man do to me?" Psalm 56: 3-4
I am afraid. I am trying desperately not to be. I can't help it. The fear just takes over me. I pray to God to take the fear out of me; take the anxiety; take the jealousy; take the 'this is not fair' out of me. On Coy's good days, I am blissful, full of hope, full of peace; on his bad ones, it is just the opposite. I have been angry with myself lately; I have been "skipping" ahead in time, thinking about when Coy comes home, thinking about his nursery, painting it, decorating it, thinking about life after the NICU....then a bad day comes and just knocks me off my feet. I am suddenly reminded that although we've come a long way, we have a LONG way to go. I love my child more than words can express and am so thankful for him, but this is not what I had in mind when I found out I was pregnant. 84 days in the NICU. I am still coming to terms with this; trusting in Him is all I have, and I know it's all I need. He has given me so much; I have no reason to not trust in Him always. I am still struggling with trying to find "human" powered peace and comfort; I know it does not exist; I want one of the doctors, nurses, other preemie parents to give me answers, to take away my fear; I know they can't. You see Coy's bad days (and good ones...okay, all his days) take me off my feet and bring me to my knees....Isn't this where God wants us? To look to Him always, to look to Him for everything? I know it is. He is working on me; a work in progress I am....
So Coy had an overall good weekend. We had a big scare on Friday--his belly was very large, full of gas, pushing his bowel into his lungs, compressing his lungs, making it hard for him to breathe. His oxygen requirement was increasing and he was having frequent desats. This was all being caused due to the fact that he didn't have a bowel movement for a few days, poor baby was uncomfortable and clogged up. So, he went back to the CPAP to re-expand his lungs and his feedings were halted until he had a bowel movement. He had bloodwork done to check for infection (a slow moving gut is an indicator of infection.) Thank God that his bloodwork came back normal and he was his normal active self. He wasn't "constipated" as his doctor told me; it wasn't something in my breastmilk; it was just that he has an "immature" gut like all other things because of his extreme prematurity; things don't always work like they should. Please pray for Coy's gut to mature and function properly!
So after receiving a suppository, Coy began having bowel movements on Friday night; his feedings were resumed (6cc) and his XRAY looked much bettter on Saturday, his lungs re-expanded. So, he was taken off the CPAP and placed back on the cannula; his oxygen requirement has been 21-28% since and he has been breathing well.
He is still "throwing" arrhythmias despite being on propranolol. Pedi cardiology came by again on Saturday; they are all-in-all not too concerned about it; they say it's fairly benign unless he goes into SVT or something with a HR greater than 200. The problem is, every time his heart is out of rhythm, his blood oxygen level drops. Here comes my human fear again--We can't take him home doing this. He will wear another holter tomorrow to check things out again...
Please continue to pray for Coy, for his total and complete healing. We are so appreciative of all the love and support...
Unspeakable Joy - 11 months old
14 years ago
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19 comments:
I don't understand your fear because I've never been where you are. But if I just try to imagine where you and what you are dealing with I get a glimpse of the fear, the this is NOT fair feeling, asking WHY, etc. I don't have any answers or even "comforting" words since I am not God. But, I do pray that God will heal little Coy and that your family will be able to go home soon and without worry. Coy is a very blessed little boy to have YOU as his Mama. He is so precious and I DO pray that his little body will be healed, that he will beat all medical odds (which it seems like he has), and that you will be able to relax and enjoy him without worry and stress!
So what's wrong with a little hope in the way things can be after NICU? Isn't hope before faith? If you have even a mustard seed of hope then it will build into faith and then knowlegde in God that all things are possible. (even those things that seem impossible) Chin up! Even though Coy's parents watch his ups and downs everyday, Coy is bringing light and building faith in so many of those who read about his life. Thank you for sharing him and letting Christ light shine through him to us. :)
AnnMarie,
I was finally able to view your HomeshadePhotography video today on AOL...& of course I cried. I asked the Lord continue to strengthen & supply you, Chris & especially your sweet little Coy. I was also reminded of this beautiful hymn that always encourages me. May it be grace to you.
1)He giveth more grace when the burdens grow greater,
He sendeth more strength when the labors increase,
To added affliction, He addeth His mercy,
To multiplied trials, His multiplied peace.
2)When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources,
Our Father's full giving is only begun.
(chorus)His love has no limit
His grace has no measure
His power, no boundary known unto man
For out of His infinite riches in Jesus
He giveth and giveth, and giveth again.
much love, Bethel (RN)
Dear Anne Marie,
I cannot begin to imagine everything that is going through your mind. I'm sure it is very hard to find a "peaceful place" to go to with everything that is going on. Since Coy was born, I have marveled at your unbelievable strength and faith. But, you are human with human fears and doubts. And, even more than human, you are a mom. And that, I can relate to. A mother's love is something that has to be experienced to be understood. I know you would do anything in the world for your son - that you are doing everything in your power for him. The mix of feelings and emotions that you are experiencing come from that mothers love. Just remember, when we are weak, God is there. God is always there - He is your peaceful place. Trust in Him.
Love, Reyne
Anne Marie, It takes a special person to be able to bear one's every thought and one's soul to the world. You are one special person, as are Chris and Coy. It is only natural for you to be afraid and worry about the future. I'm sure if I was in your shoes I wouldn't have nearly the faith that you have shown. I will continue to lift you all up in prayer so that God will give you peace and strength and that he will give Coy total healing. In love and prayer, Vicki
Girl...as a mother myself I can not imagine how hard is everything for you... I can not tell you how much we all admire you... I have no other words for you girl but just to let you know that we are here praying.. praying a lot... be patience and continue trusting God as you always do... I guess God knows that you are trying hard... and I know that should be enough for him... we are praying girl... prayers are always on Coy's way. Please try to talk to the angels too... they are after all closer to us humans... maybe you can feel and see God throu the angel's presence near Coy... and in that way, when you feel down and weak, they can make you stronger increasing your faith in God's will.
We all feel for you girl...hang in there...we are all counting on you...
Esperanza Orlando & Liam Penaloza
I'm trying to find just the right words, so if I fumble...forgive me. I truly believe that God WANTS you to dream of, and plan for, the future. The dreaming and planning begins when we find out we are expecting. Often, in one way or another, our dreams need to change in ways we could not have anticipated. For example, when we were expecting our first child I had SO hoped that the birth of the first grandchild would mend my broken relationship with my mother (my father had already passed away). But she died suddenly and we buried her 5 days before my son was born. Although I was heartbroken, I eventually (and this took a while) was able to find joy in the fact that she knew the baby was coming. It still makes me sad that my children missed out on knowing my parents, and it always will, but I can still find joy sharing stories about them - and I know that my children are where my family, past and future, meet.
God has hopes and dreams for us, His children, that don't always go the way He has hoped. That doesn't mean He stops dreaming - and neither should you.
I hope this doesn't sound "preach-y" - it's not meant to be. God has brought us here, together, to witness to Coy's miracles for a reason. We may not know what that is today, but one day it will all be made clear.
Praying for Coy to have a fully functioning tummy, a strong and steady heart, clear and healthy eyes and total healing! Praying, too, for Ann Marie and Chris - for strength, renewal, and may they feel God's loving arms encircling them each and every day. God Bless!
Your love is deep
Your love is high
Your love is long
Your love is wide
Deeper than my view of grace
Higher than this worldly place
Longer than this road I travel
Wider than the gap You filled
Who shall separate us
Who shall separate us from Your love
Nothing can separate us
Nothing can separate us from Your love
We have been there with the swollen gut and collapsing lungs. God got us through it 8 years ago and He will get you through it now. It is a hard road that you are on right now. Is there a preemie parents support group you can call? My husband and I have mentored several families through the NICU since our Wyatt came home. Perhaps your hospital has something similar. We found it to be a tremendous help.
God bless your whole family.
the Mom
I came upon your blog and I want you to know that I am praying for Coy and your family. My son was a 29 week premie born in August of 2006 so I understand what you are going through. God does work miracles and is evident through what He has done in Coy's life. I know this is a really trying time for you and if you would like to talk to someone who has been through the NICU life and trying times of having a preemie I would love to talk to you. My email is ashockley79@netscape.net.
Amy
Nashville,TN
I wrestled with some of the same questions after our daughter was born and found myself telling God one night that she shouldn't have to have 3 surgeries before she was 4 months old. He gently reminded me of Psalm 139:16 in which He states that all of her days had been written in His book before one of them came to be. I had unwittingly written my own "script" for her life and had to surrender it, trusting that He knew what He was doing and that this wasn't His "Plan B" for her life.
Three years later, I can't say that I understand the reasons behind all that she's gone through and I still have to surrender her and some of my dreams over to Him again on a regular basis. But I have seen His faithfulness to see us through things that were unimaginable to me and trust that He will somehow use them for His glory.
I pray that you find comfort in knowing that your feelings are not uncommon and that He is using Coy and your family for His glory.
Blessings on all of you,
Lori Baldridge
"Don't worry because I am with you. Don't be afraid, because I am your God. I will make you strong and will help you; I will support you with my right hand that saves you...I am the Lord your God, who holds your right hand, and I tell you, "Don't be afraid, I will help you." "
I won't try to understand what you are going through since no one can unless they have been in your shoes but I am a Mom and I know a mothers love for our children. Thank you for your honesty and letting us go through this with you. My heart aches for Coy, you and Chris. I can't help but to feel so at peace for how far he has come from where he started. God's hand is on you, you are not alone and you aren't going through this alone. I will pray for God to give you stregnth, endurance and hope. I really admire the faith you have kept while going through the toughest time of your life. I just pray I could be like you if I had to go through something like this.
God Bless you!
Megan
I don't think I understood what "fear" was until I became a mother - it's an instinct that is hard to fight. I know we are called in scripture to not have fear of anything that is of man, but being human this is a tall order - especially in your situation. Please don't be angry with yourself, I think it is part of the devil's way to try to defeat you when he sees the glory being given to God through Coy and you and Chris. You are an inspiration and a strong woman of faith and most importantly an excellent mother. More prayers for total healing for Coy - especially his heart and gut. Prayers for you and Chris to stay strong and find peace to sustain you in this journey.
Trust me it is ok to feel the way you are feeling. My twins were in the NICU for a long time, my son a total of 109 days, and I can totally relate to the ups and downs.
I pray for your family and Coy daily. From my prespective, the fears, being angry and being mad is just part of our process on understanding and processing everything that is happening in your life and your babies life. Sort of a greiving process for being cheated out of the perfect delivery and being able to bring home your child.
I know that it is hard now, but you will be so happy soon, when Coy gets to come home from the hospital and sleep in that nursery.
God Bless your family. Hugs to you!
i don't know you. i got little coy's website from a friend of mine. i had a 30-weeker in the NICU for 33 days. i can't imagine the 84 you have endured and the untold number you have yet to go. but i've read your story and i want you to know that i am praying for you and your family. these days are INCREDIBLY hard and even though i went through my NICU experience, no two are the same so i still don't know exactly what you are going through. but i have an idea. i know about the ups and downs. i know about the "when (s)he comes home, i'll...." i know about the scares you get when the phone rings and it's THAT number. i know the joys of just one more cc per feed! i know all these things and the MANY MANY more than make up this unique experience.
please know that you are bathed in prayer - you, your husband, and little coy. please know that the lord IS with you! the thing that got me through was "For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline." (2 tim 1:7) i was so afraid, not only for my daughter but for myself as well! and my family. but the lord was faithful and got us through the roughest waters we've ever been through. i know he'll do the same for you. i CLAIM that for you right now!!
i know you have a HUGE support group around you, but if you need to talk, vent or whatever, i'm here. i understand.
we understand all these emotions all too well Ann Marie. There is no cliche alive that helps us as we deal with each new path that seems to appear out of nowhere on this journey called "micropreemie"...
BUT... I will say, we are not alone,... other than God creating us because he desired to,... we have each other, and we are here praying, waiting and knowing God is here among us all. Including and Especially Coy.
Love you guys! Thinking of you always.
John and Kelly
Thanks for being soooo honest. It is un-imaginable to me..all the fears and "new" life you have taken on. Not a road of choice, just one given to you. I'm praying for trust in the one who calms all our fears and freedom to dream and hope.
praying in KY
I check this blog systimatically when I check my email now and love to hear about his progress even though I dont even know you. He has already touched so many lives! You are so strong to express everything you are feeling. I think you will never know true fear untill you become a mother. Your family is an inspiration! And your son a living miracle.
No two experiences in the NICU are the same but I feel your fear...your pain....your worries. You are only human for having these fears but rest assure that God has a plan for you...for all of us. You are doing so awesome with handling what you have been dealt thus far...Coy has already proved that he is a fighter and loves his mommy and daddy! Stay Strong and just know that there's many lives that you have touched by expressing all your thoughts and feelings as well as allowing us to follow Coy's life! Continued prayers coming from Washington! Always Tracey
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