Monday, October 29, 2012

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

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


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
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!


Wednesday, October 24, 2012

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.

I mean shaina

Tuesday, October 23, 2012

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.


Monday, October 22, 2012

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.
I'll try to update facebook later.

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.


Tuesday, October 16, 2012

I might let you bend, but I won't let you break...

Well, today has been rough on this momma. As a person, I have had a decent day. I got to sleep in, lay in bed and watch endless episodes of one of my favorite shows and then eat at Chipotle by myself, talk away the afternoon with Nick's aunt up here at the hospital and then have chic fil a for dinner. For any ol person, not a bad day. As a mommy...that's been a different story. Wow. Lord, really? There are moments when as a mommy I have reached the ultimate level of stretching and adjusting, bending and feeling like the clay on a wheel of a beginner pottery student. ugh. I truly wanted to throw in the towel and say, "you know what, find someone stronger, find someone with more stamina, less emotion and more drive...I'm done." Yet, I come up to Noah's room and take one glance and realize, I'm in too deep. I can't get out now, even if I truly wanted to. So back to sleeping in. I haven't slept past 8:30am in years. It was weird. Granted, I did get up and pump twice last night, I still slept in. Just plain weird. There were no kids to change, feed, play with, snuggle with, chase around...I just laid in bed, watched tv and vegged out. It was disgusting just about. I'm used to having a schedule, chores, kids, etc and that was all void this morning. It was me, myself and I. I am not sure I like myself that much...haha. But, seriously, I felt useless and almost guilty for others taking care of my babies, my home being left unattended, my husband being a single daddy for the next however many weeks, etc etc. I finally got up and got going. I decided to get lunch somewhere other than the hospital, so I splurged on Chipotle. hehehe. Right as I got into the parking lot I got a text from Mrs. Mac who is keeping Ava a few days this week. Such a Godly and precious woman who we trust so much to watch our baby girl. She sent me a text with multiple pictures of Ava in it. They went to the pumpkin patch. So cool!! At the same time I bawled. Not because they went, but because I couldn't take her. I am supposed to be there with her, taking her places and experiencing fall things with her. Yet, I'm not. My place is here right now. I just couldn't help but weep because I miss her so desperately.  I know she is being taken care of completely. She is not needy for anything and I am beyond thankful for that. My heart just has a hole in it when she's gone from me. It aches truly. So I pull it together and have my lunch. yummy. I get to the hospital and begin to have a peace because I am at least with 1 of my babies. Even if I can't do anything for him, except make milk. ha. I hung out for awhile and then got an update from one of the drs. (I will update on him I promise, just later in the blog) Anyway, part of his update to me included letting me know that  Noah cannot use my milk right now because the natural fats in my milk are causing some fluid buildup. So, they have him on a kind of formula and that should help keep the fluid build up down.  But, that was another blow to my mother's heart. The one thing I can give my baby boy right now. Tangibly. (not spiritually, I know I pray and cover him endlessly) I mean, physicaly the one thing i can do and he can't even use it. He will probably be able to drink it at some point, just when all his fluids come down all the way. Still. Just hurt my already cracked heart. I went and pumped right after that anyway...even though it seemed useless and actually made me feel stupid for a minute. It did give me a chance to have a private place to cry for a bit and not act like I have it all together.
Nick's aunt Janis came by and we had a nice visit. Got me through part of the afternoon. I got chic fil a for dinner and now I'm up here trying to unload my mind and heart a bit before some deep bible study/journal time. The lyrics to a song that has been sort of popular lately in the christian music realm has been on my mind all afternoon...

So your life feels like it don't make sense
And you think to yourself, 'I'm a good person'
So why do these things keep happening?
Why you gotta deal with them?

You may be knocked down now
but don't forget what He said, He said

I won't give you more, more then you can take
and I might let you bend, but I won't let you break
and No-o-o-o-o, I'll never ever let you go-o-o-o-o
Don't you forget what He said

Who you are ain't what your going through
So don't let it get the best of you
Cause God knows everything you need,
so you ain't gotta worry

You may be knocked down now
but just believe what He said, He said

I won't give you more, more then you can take
and I might let you bend, but I won't let you break
and No-o-o-o-o, I'll never ever let you go-o-o-o-o
Don't you forget what He said

Don't fear when you go through the fire
Hang on when it's down to the wire
Stand tall and remember what He said

I won't give you more, more then you can take
and I might let you bend, but I won't let you break...

I won't give you more, more then you can take
and I might let you bend, but I won't let you break
and No-o-o-o-o, I'll never ever let you go-o-o-o-o
Don't you forget what He said
So, he might let me bend, but he won't let me break. Ok. I suppose I can handle that. It is not exactly how scripture puts it, but it sums it up well enough to understand simply. :) Today was a bending day and I am not conditioned to be THAT flexible yet, but I'm working on it. I miss my husband deeply, but I do get a chance to see him this weekend and that will be sufficient for now. I can't stand being away from my baby girl, but she is in GOOD hands and ultimately God's hands and that has to be enough. We can skype and talk on the phone and that will be sufficient. I want so desperately to take care of my baby boy and that part has been taken away a bit. I can pray for  him, over him, hold his hand (most of the time when one is free of monitors)I can sit in his room and look at him and that is ok. I have to trust that my presence and my voice is enough right now. I have to remember that God is holding him in the palm of his hand and that is sufficient. See, Shaina, his grace is sufficient. Somehow, someway, beyond your ways and thoughts, He is sufficient. He is not convenient, he is not fair, he is not easy nor is he always clear. BUT, he is sufficient. His GRACE is sufficient for me, His power is made perfect in weakness. (2 Corn 12:9) So, Lord, this day of weakness perfects your power? My horrible day makes you glad? sort of. Shaina, your weakness pulls you from anything you think you can handle on your own, any power you think you have and any responsibility you think you're entitled to and allows me to be Lord. Then, in the power I have as your Lord you can be more than enough of a mommy from a distance, from a bedside, from a breastpump, etc. You can be an exceptional mother from WHERE I WANT YOU and that is under his wings, in his will and within his power. not my own. So even when he is bending me, he is in control. I can find security in the fact that I am not bending by myself nor will he let me break from any of the pressure. He is allowing me to bend so that I will realize I'm not as breakable as I thought and in his presence and by his power, I am stronger than I'll ever be on my own. Somehow these rough days are making sense. Someday I'll see even more why I'm at this place in my life. Ya ya, I know that when we get home and I have a toddler and a new born in the house and we can't go anywhere because we are  homebound so we don't bring in too many germs for his fragile immune system, etc etc I will wish I was lazy, bum girl who didn't have any responsibilites. I know, everyone tells me to soak it up and enjoy it. I am. Yet, at the same time, I was made to be a wife and mother. That is my calling and not being able to "do it all" the way I think I should is hard for me. I guess that is part of the lesson right now...I am not supposed to "do it all" the way I think I should, but the way he has laid out for me. That way is within his grace, with others' help, within his Word and his Spirit.
If I could tell people one thing that is most important about any life circumstance..don't get comfortable. That's when we rely on ourselves the most and we quit "needing" Christ and we really just cut ourselves off from His voice. Then all of a sudden we have a crisis and NEEED his so much. "bad times" can be good times if we let them. I would never ask this on anyone. Congenital heart defects, month hospital stays, open heart surgeries etc. BUT, I desire everyone to be able to know God on a deeper level everyday. This is how God is choosing to draw us closer and I am grateful. Not always happy about it, but always thankful.
So that's today. whew. Glad it's winding down.
To the update y'all want:
Noah is doing well. Sometimes I don't realize just how far he has come in a matter of a couple of weeks. My son went into cardiac arrest a little over two weeks ago. The scare we had was more than a scare. He almost died. They had to do compressions on his little chest for 15 minutes to get him to have his own rhythm. I haven't been able to blog or talk about it much since then because it is still so fresh, but I want to be thankful for ALL progress, slow or not and one way I can truly be thankful is to realize and remember how close we were to losing him. Gosh, I'm just amazed at how far he has come in this amount of time. He has been off the pacemaker since saturday morning. SO amazing. That is such a huge deal. So thankful. His poor kidneys have been hammered by meds daily but they are holding on. They were able to go down on some medicines today, so that is a plus. They have been struggling to get fluid off of him since the cardiac arrest because of all the meds they had to give him, blood, etc. But, slowly we are making progress. he is "outputting" more than he had been. That is good. With heart patients they need lots of fluid for many different reasons, yet, they need to not be too swollen at the same time. It is a game really. So, he has been "playing the game" well the last few days. There needs to be more swelling come down before they can start getting him off the ventilator. The milk thing. So, my milk has natural fats in it that were causing fluid build up in the lung/chest area and so they put him on a formula to help him get nutrition, but until he retaining less fluid, should help with that. crushed me, but whatever is BEST for my baby boy, is what we'll do. Hopefully he will be able to use my milk again soon. The drain they put in yesterday has drained out most of that fluid build up so that is good as well. He got is PICC line cleaned today, so that is happy for him. He peeked at me a lot and listened to me and his great aunt janis chat it up. ha. I think it put him to sleep honestly. haha. He is just adorable and I can't wait to hold him someday...
Prayer requests for noah:
lowering of meds
kidneys to be healthy and functioning at 100%
continued rhythm on his own without pace
no infections
getting off the ventilator
nutrition from formula with no extra build up of fluid
to get back on my milk
continued rest without sedation
pain managment
continuing to take a pacifier and work on sucking motion
for comfort and love even when I'm not here.(hard day on mommy remember) :)
Thank you all for walking this road with us. For picking me up when i've gotten to tired to go on. For your words of encouragement and love. the PRAYERS. wow. It's global really. amazing and blows my mind every time I think about it.
Thank you so very much, to all of you.
A quick request for myself....please pray that I can continue to press on, pray for safe travel for nick this weekend, for Ava as we are a part. my heart to not hurt so much so often.
thank you.


Monday, October 15, 2012

monday monday...

Well, it's monday. A new day, a new week, a new adjustment to the "schedule" haha. what schedule? :)
I am sitting in Noah's cubicle, cozy on the couch, his tv has Finding Nemo playing, I have pandora playing my hillsong station, a big glass of ice water next to me and the rest of the afternoon to just sit and soak up all the day has for me. I like to do my quiet time/bible study back in noah's "room" because it is quiet, calm, and I have no real distractions...I can really just soak Him up and listen to the Lord. I'm certain that is the main reason I have stayed focused on the Lord and his hand in all of this.
Ava is home, with our friend Mrs.Mac. She has been so sweet to send me pics and let me know how their day is going. :) She slept all night in her big girl bed. She LOVES it. I'm hoping and praying for Nick's sake that she does well all week. :)
Speaking of Nick, he gets to come by himself this weekend. It has been over a month since him and I have had any true alone time for longer than a couple of hours. Thanks to a sweet sweet selfless man we know, he gets to come down here without us paying 350 dollars as well. We are beyond thankful and excited to get him down here for a whole weekend of spending time together, and with noah without distraction. Looks like we will be eating at some places, going to a movie, hitting a mall and of course spending time with our baby boy. yay!

So, noah is doing pretty good. He had a decent night and is resting today. He has had help with the resting due to some good meds, mainly because they put in a new drain to get some fluid out from his chest area. He got a chest xray to make sure the placement of the drain is right. He is on more blood pressure meds trying to help get some fluid off of him, as well as lasix. I'm still praying that the Lord take care of the swelling so he won't be on so much medicine. the waiting these days is getting harder, but i'm thankful and just resting in the Lord while he heals my boy.

I am going to go back to nick's cousin's house for dinner and to get all the milk I forgot to bring to the hospital this morning. sheesh. then i'll come up here and watch monday night football with my boy. :)
guess that's all for now...
kinda lonely, but enjoying the alone time as well.
blessings to all,

Saturday, October 13, 2012

Let It Rain

It's 1:00am. I had to get up to pump. Bleh. Yet, I'm so glad I can do this for Noah, so I press on. :) I couldn't go back to sleep though, so I'm downstairs at the computer desk at the Ronald McDonald House, updating y'all on where we are at and what's been going on...this might be long and hard to follow. Bear with me.

It's raining. Hard. Like, a big thunderstorm with thunder and lightening. Wind too, like at home. It's nice. Thankful for rain to cool things down and refresh them. Of course in Ft. Worth this might just mean lots of humidity tomorrow, no refreshment about that. haha. O well, I'm thankful anyway. The jeep needed a good power wash.

Poor Nick, the first time we have slept in the same room, much less the same bed, in about a week and I wake him up snoring, then I didn't wake up to hear my alarm going off to pump. Ugh. I feel bad. Someday, we'll be back in a routine and I won't be so bothersome at night. He's so sweet about it all though. I'm thankful for a husband who is gracious and patient with me. (with everything) Truly. He has been so amazing through this entire process. He has let me be mad, upset, confused, angry, sad, happy and excited about the smallest things. He calls me beautiful, he misses me being at home. He takes care of Ava so much and so willingly. He's so excited to have her back at home with him starting tomorrow evening. We make a team and that is what marriage is. Honoring the Lord, worshiping him, through our union. Being a team for him is the highest goal of marriage. I think we do a decent job of it. I truly believe that God has so many things in store, not only for our family of 4, but for the two of us. We have gotten to a level of depth lately, by force and by choice, that it is a comfortable settled in feeling. It feels right, it isn't always easy, but it is worth it. We sacrifice when needed and give when it's hard. We go without and we endure large loads as well. I'm thankful to be on team W and to be submitted underneath Nick in all the things God takes us through. I love being Nick's wife.

I also love being Ava's mommy. I dread tomorrow as they drive off. :( I cannot imagine the next few weeks without my silly Ava smiles, her goofy laughs, her saying "hi" to everyone in the hospital. I just cry every time I think about her not being near me. I have not been apart from Ava for longer than overnight since she was born and I am truly needing prayer to stay strong and get through tomorrow without a total breakdown. I feel like such a whimp and yet at the same time, I feel like I've become stronger than ever the last month through all we've been through, why can I not get a grip? Ava will be more than taken care of. Her daddy adores her and will take wonderful care of her each morning and night and during the day she will have wonderful care at home mon-wed with our family friend coming over to watch her and thursday-friday she will get to go play with and be taken care of by another family friend. She will be ok. She will not forget who I am. She will thrive and even grow during the next few weeks that we are apart. God loves my baby and I trust that he has her best interests in mind and she is more than a sparrow to him. She is precious and she will be ok. I have to believe that for myself as well. He loves me, he has my best interests in mind, I will be ok and taken care of and I am not abandoned. I have a lot to learn and grow through this week. I can feel it.

So, the logistics update...
Obviously nick and ava are leaving tomorrow. They are going back with Katrina and James, who came down with nick friday night. My parents are going home as well. Staci went back to N Carolina yesterday. This is our last night at the Ronald McDonald house. I feel that since I will be by myself, we should let a family who needs the space have the room we have been using and I can go back to staying with Stacey and Kevin, (nick's cousin and her husband). It is not too bad of a drive from their house to the hospital, so I think it will work fine. I can go back and forth as I please. I can stay at the hospital if I want, go to their house if I want, etc. I'm so thankful for a place to call "home". God's provision is always steady.

Noah James has had some good days lately. :) We're thankful! He is tolerating my milk well.YAY! He get 2 cc's an hour. He has been off the pacemaker since 7 am and that is great! yay! They continue to go down on certain meds. Some he still needs. He only has one drain left from having 3 post surgery to help drain fluid from his chest. He does not have a central line anymore. His picc line is still doing well in his hand and the other IV changes from foot to hand, depending on the time of day it seems. He got clean bedsheets and a bath after we left tonight. He keeps peeing and pooping well. ha. :) He opened his eyes and had a good time with his daddy tonight. They enjoyed catching up I think. He is getting better with his pacifier each day. I think that is a huge step and will help him to adapt to a bottle later. :) yay!
My concerns today were his swelling. They are pumping a lot of fluid into him by necessity. He has quite a few meds still, the regular iv fluids, fats, calories, etc. They increased his diuretics some to help get the fluid down, time just also helps that. I just ask for extra prayers in this dept because the more he de swells, the easier it will be for him to have the wound vac taken off, the vent to come out, etc. Things will just be better when he can stay less swollen. I love his cheeks, but they have been a little too chubby.

I suppose that is all for now. I might be updating again after the family leaves. Probably need an outlet for all my emotions. :( then again, I might just be crawled up with my blankee in Noah's room, soaking up the quiet and aloneness....I'll play it by ear.

Again, thank you for your love, for keeping up with us, your prayers. My how we have felt the millions of prayers being said for Noah. We are truly humbled, blessed and loved. Praise Him, for he is so good.

much love,

Tuesday, October 9, 2012

Time Gone By...

Yesterday marked a month that Ava and I have been gone from home. Sheesh. It seems like less than that and it also seems longer than that. I miss my bed, I miss my kitchen, I miss Ava having her own room, her own space to run around, gosh I even miss my own bathroom. I miss my United and all my people I know there (partially from working there and partially it's just my grocery store and pharmacy), I miss my CHURCH, I miss just running into people I know. Many people hate Amarillo/Canyon and get far away, and I understand that, but it is home and I miss it. I truly miss it and its flatness, its stink, the way I know where everything is, the fact that it is mine. I just miss it. I think at some point I'll actually miss some of what's down here too. A few of the nurses, such easy access to chick-fil-a (there is one in the cafeteria here), the way that I am getting sleep while I'm down here, the quiet time that I get when I sit in Noah's "room" with him for hours. I will miss that at some point when we get home. But, I can say right now that I have never missed home like I do now. All that to say....home isn't ever going to be the same, once we do get back and settled in. Not because we will have 2 children now, that is change enough, but because one of our children will forever have a heart defect. The surgeries he has and will undergo correct the heart so he can live and thrive, but he will live with the effects his entire life. He will most likely always be on some kind of heart medication, he will go to routine appts through out life for maintaining healthy heart function, he will live with different needs and different struggles. Our home life, our life in general will never be the same. But, it doesn't mean that it will be bad. Hard, yes at times. Blessed, always. I think of all the changes we will need to make in our daily life. I can't just pack the kids up and go to the store one afternoon or run to see a friend or have a play date for Ava with someone. We will be very secluded in our home for quite awhile, taking turns going to church, my time alone and out of the house will be to the grocery store most likely. haha. We will have to strictly limit visitors and the length of time they can stay over. If you want to meet Noah at all in the first year of his life, you will need a flu shot and a whooping cough vaccine. There will be constant hand washing and antibacterial gel all over the house. I've never had to check O2 saturation before, daily and to be monitoring his coloring, his overall demeanor along with O2 sats etc. blah blah blah... so overwhelming to me, when it is all laid out like this. Sheesh. How will we ever adjust and adapt? Then, I go up to see Noah, look at him, touch his head, hold his hand and realize...I don't care what it takes, he's coming home with us, we will get through whatever lies ahead for our family, we will make the adjustments necessary for him to thrive at home and we will be thankful for ALL the hardships and craziness because we have our Noah with us and we could not be more proud of him or thankful for him.

Doesn't God feel the same way about us? I know he does. He doesn't give up, he doesn't quit, he doesn't get overwhelmed at all it takes to get us to come home. He delights in us, in our struggle, in our needy-ness, he wants to do everything to make sure we are well taken care of and thriving. He deeply cares. He knows that we are completely helpless without him and that doesn't scare him away from taking us in, making us his own and never giving up on us.

I am thankful that He never gives up on us. I am grateful that we are never left alone, to figure it all out for ourselves with no direction. We don't realize the support and help we have in our savior until we actually seek it out. It never run outs, runs dry or fails us. Yet, as Christians, sometimes, a lot of the time, I feel like we don't even ASK for help from our Father. We complain, we gripe, we go tell our best friend, we worry and we waste away, while the Spirit is there waiting to cover us and help us. We HAVE to ask though. I have caught myself complaining to God, but never asking for His hand in my life. I have had such a shift in my faith the last few months(since we found out about noah's condition), but the last 2 weeks have thrown me deeper into the waters of His character and when the saying, "Deep cries out to deep" is thrown around in worship songs here and there, it has become a reality to me, because each time I don't think I can get any deeper into his Word, his love, his covering, his grace, I go another level deeper. I'm addicted. I would NEVER want my child or any others to have to go through what we are going through. Ever. It is hard, it is more than hard, it is absolutely terrifying at times, but I know that it has brought me to a level in my relationship with Christ, that I would never go back either. I truly treasure the time spent, in the Word and in prayer, in the quiet as he sits with me. I am thankful for it and I need it so much.

If there is any reason that we are going through this, it is simply for the fact that we are walking closer than ever to the Lord. That is enough of an answer for me, now. It has taken awhile, but I am coming to terms with the fact that there is not a solid black and white answer for why we were dealt this hand, but if the only reason is because it as drawn us to the Father......well, ok then Lord. Thank you. Truly thank you. As hard as it is to be thankful for this struggle and hardship....thank you Lord. I am certain that you are being glorified and honored through my son. He's yours anyway.


p.s. an update: Noah has had some good days the last couple of days. He is making some strides in his recovery and is resting well, healing slowly and just being so sweet. He has had a couple of things taken off, like his central line and an iv. He is no longer cathed, so he gets diaper changes and they weigh the diapers. He is on the pacemaker for stability. He has an underlying rhythm but it is not as stable as they would like yet. He has gone down on some of his meds over the last few days and they are slowly tryingn to wean him off of the ventilator. all good things. all thanks to the Father, the prayers he has answered from all the people lifting Noah up and such amazing medical care. we are blessed. thank you to everyone who is praying. We will never be able to thank each of you enough. Y'all bless us daily. thank you so much!

Friday, October 5, 2012

Scars of Hope

 I think about Noah getting sewn up today. I am thrilled we have come to this place in his recovery. I am so thankful that he will not have a patch covering his chest, right where his heart is. There is comfort in having him closed up and on the mend. I also know there are risks that can come up with this small yet serious procedure today. So, I lift him up yet again, in every little detail to the Lord so I can know He is covered and in His hands.

 I think about the scar little Noah will have. We met a little boy named Tabor during our tour and we got to see his scar. It was a sweet little scar, pretty big for a small baby, but it wasn't gross, it wasn't a big deal to any someone's eyes...but it will be a big deal the rest of his life to his parents and to himself because it means he is alive, he is here. I look at my scar from both babies and I am thankful. It isn't pretty, it isn't attractive, but it is mine. It means I have babies, it means I'm blessed with a family. I'll take this scar over a "pretty tummy" anyday. That leads me to this... Christ has scars. Those scars mean healing and freedom for me. By his wounds I am healed. By his wounds, Noah is healed. By His turmoil, torture and beating, by his ultimate death, I am alive, I am here. I am blessed. Why is it that we get so discouraged by scars, by wounds, by tough times? Because they hurt. IT's not easy, it's tough, it hurts, it stings, it is confusing, it is hard to understand, make sense of and certainly hard to see your child suffer through it all. Yet, by Noah's wound, he will be healed. That scar means he had heart surgery (2 more to come at that) and through this hard time, he will be able to function. Through all the hard times he is going through and will go through, he will have testimony to share and Christ to be thankful for. Scars aren't meant to be looked at for what they are, but for what they stand for. Christ's nail pierced hands are not pretty at first glance, but they are gleaming with hope and beauty when you look at what they mean.
I hope that somehow all that I am learning through Noah will bless him someday. I hope that he will not struggle deeply with his scar, his life story, his trials as he gets older, as other kids/teens/adults his age can "do more" than he can or run longer, play more sports, etc. I hope he takes his testimony, his scar, his life and will let Christ continue to use it as he already has (at 10 days old) for his glory.
There are times when I get real still and quiet and satan tries to fill me with doubts, questioning God on why my child? why children at all? Why would you make him this way? why would you want us to go through this? I have to combat that with the TRUTH that God does not make mistakes, there is no plan b. He was not surprised by Noah's heart condition, he formed him and made him in his image, whether I understand that or not. I am thankful that I can have hope in him even when it is so hard. I know someone reading this is struggling with why God seems so far off, why he does not seem to care, why did he give me this issue or this trial? As my Jesus Calling book stated a few days ago, "Don't evaluate my ways with you, simply accept them thankfully" I dare you to thank God for your illness, your child who is driving you crazy, for your struggle whatever it may be, job search, financial trials, family problems...thank him first for them, yes you read correctly....thank him... and then seek him. really. just be honest with him.  There is no need to reveal yourself to God, when he already knows your inmost thoughts. Just be with him. Be real with him. If I had not questioned and wrestled with the Lord over the last few weeks (well, months since this whole thing started) I would not be able to write this, function, continue to trust and seek him at all.
I also know that without the body of Christ, his people, rallying around us to pray, support and love, I would not have the strength I do as well. I would be in shambles. The power of prayer is beyond real. It is the fuel that we need to fight this fight of faith. Bless others by your prayers. Encourage them with your words. Be sensitive to the Spirit and pray when he asks. Someone is leaning on and resting in those prayers. I have been one of those and I am thankul beyond words. I truly cannot ever thank any of you enough for the prayers you have spoken over my family, myself, nick, ava, mom, dad, and especially Noah James.
Blessings always,