November...really?

Sheesh. It's November. I have not seen home since September 8th. Wow. Such a long 2 months. Amazing yes. Hard, definitely. Worth it, absolutely.
The latest....
Well, I talked to one of the picu doctors today and Noah is doing well. He is SLOW at getting better, but he is getting better. The Cath on Tuesday showed that his heart and the repair done to it are functioning well. His body has gone under so much trauma that it is trying to heal as best as it can but it is just taking a long time. Due to the cardiac arrest, I believe that is why we are having a slow time. None the less, he said that Noah's kidneys have gone through the ringer and are very damaged. Due to slow blood flow, which is normal in hypo plastic left heart babies, and all the medicines pumped through his little body, his kidneys have just taken a beating. They have taken him off of the lasix and backed off the diuretic, and tried to lessen other meds as well. Hopefully they will see some improvement in his kidneys soon. He is getting rid of fluids ok, but still needs to get rid of fluids in order to get weaned off the vent in a timely fashion and in general he needs the fluids off of him. He needs to really pee and get rid of excess fluid. They readjusted his right chest drain and got some more fluid out of it today, so that is good. He has some clotting, even on Heprin (blood thinner) and that can be normal in a hypo plastic heart baby as well. Not a good thing, but normal. His Oxygen saturation was real low the other day when I was up there, but seemed to normalize later in the day.
He has been off of the pacemaker since last weekend. That is very important and good! The Ventilator. He has been on a ventilator since the day he was born. :( This can be a big deal to get him off of. Please pray they can continue to wean him off of it. I don't want to rush or push that sweet boy before his time, but please pray that comes quickly. He needs to be off of that thing. It is a huge step to recovery. I think a lot of the things slowing him down over all will correct when he is able to be held and picked up. This can only be done when the ventilator is out and other tubes/drains taken out.Other than that he seems to be doing well. He loves his passy. He is so sweet and has great hair, a handsome face and precious eyes. (when they're open)Feedings have gone up, so hopefully that will help his systems. We'll see.

So, how to pray:
pray for total restoration of Noah's kidneys RESTORATION is the word of the night. both for momma and noah
pray for fluids to drain and drain, for PEE
Pray for gas to be released. yes, pray for Noah to toot his little heart out.
Pray for clots to be no more! For the heprin to work and then be able to be weaned off the heprin.
Pray for his chest drains to be taken out.
Pray for him to be weaned off the ventilator and for all stats to remain consistent.  (HUGE)
Pray to stay off the pacemaker
Pray for him to be able to be picked up and HELD.(this is for mommy too)
Pray for Noah to not have damage to other functions in his body due to all the trauma.
Pray for him to get relief from his bed sores he has on various parts of his body
Pray for him to continue to recognize myself and nick as we are not able to be nearly as close as we would like (holding him and playing with him)
Pray for him to not need as much pain and sedation meds as often
Pray for him to have all the immune support he can get.

So, most of you know that Ava has been running a moderate to high fever for 2 days now. I suppose it was a good practice fun for me to be reminded that when Ava has the slightest fever, she has to be taken to the dr and looked at. slightest of fevers could mean trouble for Noah when we're home. So, it was good practice. They ruled everything out and sent us home to treat the fever and see how things go. I think teeth, exhaustion and travel have caught up to her. :( I so long to be home again with her during the days. She does so well on a routine.  (as do i )
Pray for her to have full health restored
pray for her transition back to home this coming week
pray for her to be able to rest
pray for the next 2 weeks of me not seeing her again. :(

I can't even begin to think of all the ways I need prayer. I could post a whole new blog about that. maybe tomorrow. haha. just pray as you feel led. I'm tired, weary, holding on to every little bit of hope I can muster but trying not to feel let down when things don't happen the way I think they could. Pray for Nick as he endures and works. I miss him terribly. I cannot fathom life without him. I would just collapse from sheer exhaustion. He is just so wonderful and I miss him. a lot. all the thoughts and lessons on marriage through this time..that's a whole other blog as well.
Love you all. thank you for the prayers and for holding my arms up.
blessings,
shaina

The trusty ol dishcloth....

I feel like the old dishcloth that lays beside the sink or over the middle part of a 2 section sink. You know what I'm talking about. The ol rag that gets used to wipe up spills, cleans up the counters, gets dropped on the floor, rinsed and rung out and every once in awhile it gets forgotten in the bottom of the sink and gets smelly. You know exactly what I'm talking about. I'm the smelly rag in the bottom of the sink.
I know, it sounds weird and I'm not sure I can explain this without sounding really crazy. I just feel that I "do my job" well, I'm dependable, decently useful, I try not to whine or complain to much about and if I do complain I try to then find the good in things. I am loyal, hard working, stubborn at times, committed and love deeply.
This season in my life though, I feel like the forgotten rag in the bottom of the sink. Stinky, dried out, useless for it's purpose, and needy. Needy for a washing. Useless for cleaning. Dried out from the lack of usage and stinky from all the grime and yuck it has endured.
Am I making any sense at all? I'll continue for those of you still reading.

I long for the time when I get picked up out of the sink, thrown in the wash and hung to dry in the bright sunshine. Then I will be refreshed, renewed, useful again, clean, warmed and brightened by the Son and ready for the next season. I so desire for that to happen. I'm trying my best to stay calm and try to endure this season of the sink...it is hard. It stinks. For reals. It is not pleasant. It is not fun. I do not enjoy it one bit. I do however have to find ways to keep going until I get picked up out of it. So, as I sit in the sink of trial, pain, frustration, loneliness, struggle, separation from Nick and Ava, disconnect from Noah, longing to be in my own home again, missing my church family, away from friends, family and even just the familiarities of home, etc I can try to look up.

Psalm 51:12 Restore to me the joy of your salvation and grant me a willing spirit, to sustain me.
 
Deuteronomy 30:3
then the LORD your God will restore your fortunes and have compassion on you and gather you again from all the nations where he scattered you.
Job 8:6
if you are pure and upright, even now he will rouse himself on your behalf and restore you to your prosperous state. 






 So, here I am in the bottom of the sink.... I guess since I enjoy and desire to be in my home, be about the things of my home and serve the people who live in my home, my mind just goes to things of the home to describe this season of life.

In times like these, where I don't know what my purpose is, everything seems dark and I feel forgotten by the one who "uses" me most (uses=loves, adores and cares for), I tend to just function as best I can, try not to over think anything, put big hopes and goals ahead of myself, knowing Noah is taking his time and needs this time to really heal properly, and I try to give myself space to hurt and struggle as well as have joyful days of purpose and hope.

There will come a day when I will realize that I have been picked up out of the sink. Then down the road I will be washed clean of this sorrow and bitterness, even anger and hurt. Later on then, I will be hung out to dry in the warmth of the Son and I will radiate and glow with gladness, and feel ready and useful for service again. What a glorious time that will be.

from the sink,
Shaina

God of Our Days

God of My Days
Gateway Worship

You awaken my heart
From slumbering
Meet me in mourning
And you speak to my grief

You're the light in my darkness
The delight of my eyes
The hope of the daybreak
When the sun's slow to rise

(Chorus)
I trust that every moment's in your hands
You're the God of my days
The King of my nights
Lord of my laughter
Sovereign in sorrow
You're the Prince of my praise
The love of my life
You never leave me
You are faithful
God of my days

You unveil my eyes
Help me to see
The arms of my Father
Encircling me
You're a constant companion
I am never alone
Your love is the banner
That's leading me home

(Chorus)

My eyes are on You
My hope is in You
My faith is in You
My eyes are on You
My hope is in You
My faith is in You

PLAY SONG 

 

I'm tired. I'm so very tired. I'm trying my hardest to see things with thankfulness at the forefront. It gets tiresome when everything seems to be dragging, no progress in sight, no answers, no news, nothing to measure success by. I'm just so weary of the waiting and the sadness that comes with it. Tomorrow is the heart cath. I'm supposed to be at the hospital no later than 9am and I haven't even gotten out of bed before 8:30 in awhile. eek! I shouldn't be posting right now, but my mind is wandering. I might not sleep at all tonight, honestly. So much on my mind. I'm trying to focus my heart and my heart's cries to the Lord and for his favor to be over us tomorrow. I am just longing for a clear cath so that we can move forward and see how noah progresses by weaning off the ventilator, going down on meds, increasing feedings, to be held once he's free of drains, the vent and a few other tubes. Lord I am just sure that if he gets held he will start to progress. Yet, I know that this time thing is all up to God and I have no say in it. I have not had a say in any of this and I'm just waiting for that to be honored. I feel that my attitude has not been honorable though. But, it is sooo hard to keep from going through the ups and many downs of this journey. Surely he extends his grace to me during the times I am not pleasant. This song just says all I want my heart to say but is too weak to. 

I pray that I can update with glorious joy very soon. For now, I am leaning on y'all and the prayers you're sending up. I will not give up on the Lord. He has not given up on me. 

hoping to post a great big wonderful update soon!

blessings

shaina

Martha's Mary Moment

I'm a Martha. Hands down. I want to being doing, serving, baking, cooking, being hospitable, taking a meal, taking on another project, etc etc. I am wired that way and in this journey we've been on that has ceased to happen. I can't DO anything, for anyone. I have lots of downtime, lots of time to think, to over think, to be anxious, stressed, alone, frustrated and hopeless. I have truly tried to spend most of my time in fellowship with the Lord, but I have been trying so hard to "learn something", "grow from this", "share with others", "glorify him", that I forgot to let him love me, heal me, hold me, minister to me, calm my fears, wipe the streams and streams of tears from my face, to rock me into a peaceful slumber. I had gotten to where my quiet time with him in Noah's little cubicle was to fill the time as I waited in his room for the next update. It was a great "doodle time" as I found inspirational sayings and scriptures to write in my journal and make pretty in between sections of the same ol prayers and pleads. I'm not saying my quiet time with the Lord was in vain, it has served quite the purpose, it has kept me in the Word, it has kept me calm and yet it has kept me BUSY about the Lord, not just WITH the Lord. Sunday through Tuesday feel like one long day to me. It was quite the process of up and downs, struggling, wrestling, yelling and screaming at God and questioning him as to why this is still happening, why isn't he healing my boy, why is he standing back watching all of this and not intervening, does he care, does he really care? Doesn't feel like it. The last few days were like one long reenactment of the day we found out about Noah's condition. I was feeble, wanting to curl up and die with agony and physical pain due to the circumstances. It all rushed back and the emotion barrelled out of me like Niagara falls, the nightmare was all around, the doubt, fear and turmoil in my mind. Scary. There was a moment when I had to literally scream for Satan to leave me, my family and my sweet son alone. To be in such warfare has taken a toll on my body. I've felt sick and have seen the effects of this warfare on my mind and heart as well. My mind, my heart, my struggling and fighting the Lord were not in vain, for  yet again he proves his faithfulness and love. I've always looked at the story of Mary and Martha as one of works/faith. Martha was full of works and being busy for the Lord and Mary had the faith to stop and just be with him. That is true. But, I think it goes deeper. The lesson God is teaching me in this moment is that in my relationship and walk with him, I am a Martha and to be a Mary is what he is calling me to be. In my walk with him, i am busy looking up the Word, reading a devotional, trying to figure out what I should be learning, what I should say next to people who ask, journal all my prayers, thoughts and needs, read a good inspirational book, give everyone the answers I think I should give, etc etc and ALL God is asking me to do right now is to just be his. (to allow Noah to be his). He desires me to just be with him. I don't have to try to figure anything out, be someone I'm not, pretend to be strong or whatever. I can just soak him up, even when I'm angry, even when I doubt him, his purpose or even his existence in my situation. God doesn't desire to give me answers or the play by play plan for  Noah's recovery, as much as that would thrill me to have. He just wants me to be....his.
I've become the awkward person with the earbuds in all the time now. I walk around the hospital, the parking garage, target, the gas station, etc  with my earbud in. It takes everything in me not to burst out singing sometimes because I am streaming hillsong on pandora. It truly has kept me focused on the Word through song, then as I open the Word or my journal, I am just refreshing and rejuvenating my sould and not tiring myself out by trying so hard. Right now in this place of my life, he is just asking me to hold his hand, and follow, without reservation like Ava does with her daddy. She doesn't question Nick, she just follows and trusts him with all she knows.
So, in the midst of my martha life if feels like, Mary moments are still available. This journey doesn't have to always be such a fight. There is a time and a place for struggle, but I truly can rest in him and still be diligent in faith and prayer. Having faith in Him through everything doesn't mean figuring it all out as I go. It actually means letting go of knowing, getting rid of the need to know and being ok with not having a clue. scary.
So, as Mary did, I want to just be with Him. As scary as it is. (i know, scary is a bad adjective, but that's all I can come up with)

As I soak up his presence and strength, I am able to go to Noah's bedside and not quiver with fear or doubt, but I can come up to his bedside as his Mommy who has a Word to pour over and into him, his mommy who doesn't look at him and struggle to connect, but his mommy who reminds him of his worth, his purpose and that he has thousands of believers lifting him up in sweet prayer. I get to tell him his story as he grows up and not only how it formed  him but how it transformed me.

Please continue to lift up my sweet boy. Pray for MIRACULOUS progress, for his complete person to be on the mend, to progress and being to thrive. My big prayer is that he will progress enough to not need a heart cath next week. Pray for him to get to the point where he can get off of the ventilator. Once he is off the ventilator and has his chest drains out I think I will be able to hold him and boy will we have some cuddle worship time, cuddle prayer time, cuddle nap time, etc. I cannot wait to have that connection and communion with my precious inspiration. He truly is such a testimony of God's handiwork, mystery and purpose all rolled into a chunky ball of cute. :) hehe. I'm proud. I'm truly honored to be his mommy.

blessings
martha
I mean shaina

Deep Calls to Deep

I have never been able to wrap my mind around that statement. I have really never been able to "get it".
Psalm 42
 As a deer pants for flowing streams,
  so pants my soul for you, O God.
 My soul thirsts for God,
  for the living God.
 When shall I come and appear before God?
 My tears have been my food
  day and night,
 while they say to me all the day long,
  “Where is your God?”
 These things I remember,
  as I pour out my soul:
 how I would go with the throng
  and lead them in procession to the house of God
 with glad shouts and songs of praise,
  a multitude keeping festival.
 Why are you cast down, O my soul,
  and why are you in turmoil within me?
 Hope in God; for I shall again praise him,
  my salvation and my God.
 My soul is cast down within me;
  therefore I remember you
 from the land of Jordan and of Hermon,
  from Mount Mizar.
 Deep calls to deep
  at the roar of your waterfalls;
 all your breakers and your waves
  have gone over me.
 By day the LORD commands his steadfast love,
  and at night his song is with me,
  a prayer to the God of my life.
 I say to God, my rock:
  “Why have you forgotten me?
 Why do I go mourning
  because of the oppression of the enemy?”
 As with a deadly wound in my bones,
  my adversaries taunt me,
 while they say to me all the day long,
  “Where is your God?”
 Why are you cast down, O my soul,
  and why are you in turmoil within me?
 Hope in God; for I shall again praise him,
  my salvation and my God.
(Psalm 42 ESV)

I don't have some deep explination for this scripture, I'm just soaking it in and claiming that I shall again praise him.

shaina

update on noah

They found a pocket of air in noah's chest. This can be normal and it is from being on the ventilator for 28 days. everyday since he was born. :( They will be placing a drain to get rid of this air/fluid. they will give him paralytic meds to keep him from being squirmy. They will give him sedation meds to keep him calm. They have stopped his feedings for now to give him a break from using so much of his cardio muscles to digest. They are putting him back on some blood pressure meds. The infection they discovered is being treated with antibiotics and hopefully they have that under control.
I am so tired of seeing him suffer and go through so much in his little life. PLEASE pray for him to find relief with getting this air drained out of his chest, for his vitals and stats to level out, for him to be able to be off the pacemaker and not need one permanently. please pray for him to progress. To heal. to get a break from all the crazy.
pray for Ava right now, she is about to have to go through a VCUG test. They basically cath her and shoot some dye up into her bladder to see if it will leak up into the kidneys. So, it is not a fun test. They will see if her right kidney is still having reflux.
I don't know how to ask anymore. for prayer, for healing, for anything. just pray as you feel lead, when you feel lead. I'm just raw right now.
thanks.
love
I'll try to update facebook later.
shaina

So I Yelled at God

Ya, you read the title right. I yelled at God. Loudly. I dropped off Nick at the airport last night and sat in the parking garage for awhile and then left to get back to the hospital. I wasn't going to tell anyone about this, but I feel like it's part of this journey and it's part of what I'm trying to learn. So, I'm telling you. I yelled at God. Madly. Loudly. Possibly even rudely. I questioned him, asked him why, told him I am angry that MY child was born "broken", that he's been on a ventilator for every day of his life, that he's been sedated for most of his 4 weeks, that he at some point has had none of his own blood in his body due to surgery, that his whole existence is surrounded by tubes, medical staff, florescent lights and hand sanitizer. He hasn't felt his mommy or daddy hold him, I think he knows my voice, but sometimes its hard to tell. Why is this the road you chose for us? I don't like this hand that's been dealt to us and I'm done being "positive". I'm sick of being the "strong" one. "Y'all are so strong, y'all are so faithful, y'all amaze me, y'all are so strong and He only gives those strong enough the hard stuff. blah blah blah. If we weren't so strong would we have a healthy baby? If we didn't trust the Lord like we do, would we be home with him our little girl and each other? Our precious boy and the gift he is, is from the same God that I yelled at yesterday.  All of this is His doing. He is in control. Here's the kicker.... that ol Chris Tomlin song we all just love and sing loudly, "all of you is more than enough for all of me"

All of You is more than enough for all of me
For every thirst and every need
You satisfy me with Your love
And all I have in You is more than enough

You are my supply
My breath of life
And still more awesome than I know
You are my reward
worth living for
And still more awesome than I know

All of You is more than enough for all of me
For every thirst and every need
You satisfy me with Your love
And all I have in You is more than enough

You’re my sacrifice
Of greatest price
And still more awesome than I know
You’re the coming King
You are everything
And still more awesome than I know

More than all I want
More than all I need
You are more than enough for me
More than all I know
More than all I can say
You are more than enough for me


Have you ever sang that song and meant it? I mean it's easy to sing it when we are all healthy, happy, home, in love, kids are well, we live in a happy warm home with all the pretty fall decorations up, pumpkin bread baking in the oven, family dinner planned for the weekend, job is good, church was full filling that morning, nothing  major is dampening our good mood, etc. It's so easy to sing it then. Oh, you're more than enough God. la la la. It's not so easy to sing it when your 6 hours from home, you have a 4 week old in the hospital and has had open heart surgery, your husband is having to go back and forth every weekend, to work, and keep the little girl who somehow hasn't gotten lost in the craziness of all of this, when that sweet boy is progressing and all of a sudden there's an infection present, a pocket of fluid in his chest that needs to be drained and all his stats are up and down, the pacemaker is back on and the feedings turned off. Try singing it then. Try saying "you're more than enough for me" at that place. It sucks. It's hard. It's oh so very lonely. For every thirst and every need. "YOU'RE MY SACRIFICE OF GREATEST PRICE". oh. oh ya.
I suppose in all of this, God would understand the most. He gave up his son for me. Christ understands because he has felt abandoned by God and he even yelled at him too. "you satisfy me with your love". Is his love enough for me in this moment?  I have not an ounce of control in this situation. It is terrifying to be so vulnerable, helpless and lonely. My daughter is growing up before my eyes without me there, my baby boy is almost a month old and has never been held by me, my husband is so strong and keeps trucking along working and keeping our home together in amarillo. Am I satisfied in your love? Can I somehow be satisfied at this place in life, right now , today, amongst the hard stuff?
I suppose so. What else is there? All of this "stuff" is a gift.
So, here I am. weary. tired. overwhelmed and done. Just help me function Lord. I know you're here. I know you already knew I'd be mad. Kinda comforting really. Somehow, someday I'll have a smile and will be rejoicing. Today I don't have a smile, but I choose to find joy. So, here's why I choose joy

I'm alive.
I have a relationship with Christ
I have a husband
He loves the Lord
He loves me
He serves us
I have a daughter
She's precious and sweet to everyone she meets
She's relatively healthy and VERY happy
I have a son
He's alive
He's precious
He is a testimony and miracle
He is a strong strong boy
He is at the Father's mercy and in His hands
We have excellent care at Cook's.
They take care of my baby boy like their own
sweet, smart, thorough nurses
I have a family
I have a selfless, serving, loving, godly family
I have friends. loving, caring, friends.
There is a home waiting for our return
the Body of Christ has been on their knees for our boy. day and night


I will choose to hold on tight. I will find a way to grab his hem. Somehow my faith will heal this hurt. I pray that my faith is enough to heal my boy.
Guess that's all....for now.

shaina