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