While Everybody Is Watching

This journey has been a very public one. Sometimes that has been by our choice and others time it has not. We decided when we first knew of Noah and his heart condition that we wanted and needed support. We called upon everyone we know to begin praying for him. We have been overwhelmed by love and prayers of support for us since then. We continue to get prayers, we are on so many prayer chains I couldn't even tell you how many. We are thankful, truly. We have amazing family and friends who cover us daily. We have a church that is beyond supportive. There are people in other countries who are lifting us up to God. The body of Christ has come together in a very beautiful way. Here is what hurts though.... When we utilize facebook as a means to communicate updates about our son so that our fellow Christians and prayer warriors can continue to lift him up in the details and rejoice in the praises...that means we are "friends" with most of them. It has come to my attention that there are some people who will pray along side us and support our son and then have some very negative and rude, very un-Christ like things to say on there later. I am thankful for any prayers we get for our son, but I am sad that some of the same mouths that pray for our boy also speak hateful words and gripe about things.

I have been very vulnerable and open to everyone as I have traveled this road. My husband is very private and reserved and is not near as vocal nor as social. We make a great team. He keeps me grounded and I keep him busy. So, I have gone through this journey in a very public way, by choice. There are some days that I regret that, but other days I am thankful because the load is lifted and I can breathe. There is a line in a song that I have been listening to that says, "it's hard to grow while everybody's watching". This time in my life has been the hardest, to say the least, and it has been the most growing time as well. I always said I had a boring testimony....I accepted Christ at age 7, didn't get into any/much trouble growing up, just nothing really to tell people. This has changed that forever. All of this has changed me. I feel like I am on display for all to see and if I have a bad day or mess up or say the wrong thing that I have failed in some way. The bad days are reallly bad. The good days aren't my best, but they aren't the dark ones. Does that make sense? There have been times in the last few months that I have almost thrown in the towel, turned my back and ran as fast as I could the other direction. Why would God allow this to happen to my son, or any child for that matter? When he said he knit and formed noah in my womb, why did he mess up? Why is noah's heart not whole? Why does my daughter have to be away from her parents, who aren't divorced and didn't choose to be a part? Why do two people, who have become one, who function better together, who when one cries the other tastes salt, have to be separated for months, seeing each other for little bits at a time, here and there, with the stress of a critically ill child, a developing toddler and trying to nurture and protect their marriage at the same time. How is this God's will? How is this good? How is this of God's hand? The age old question, "why do bad things happen to good people?" Well, first of all, the Word clearly states that no man is good. We have all fallen short of the glory of God. So, "good people" are irrelevant in bad situations. Bad things happen. period. God never said following him or trusting him would be easy. The thing that God is asking us to do, is to trust His character, even when we do not understand his ways. Today, I didn't show that in my faith. I, honestly almost gave up on faith. I am so dang stubborn though, that I cannot turn away from what I know, what I have always  known and the only form of hope I see. Without faith, what hope is there? It's the gospel. We have no hope but Christ. There is no hope, but in Him who died to give me hope. It's beautiful. It's merciful. It's unfailing. It's pure. It's love. I have struggled with feeling punished lately. This whole ordeal with Noah makes me feel as if I have done something wrong and God is punishing me by making my child go through this ordeal. I was freed from that lie Sunday in worship when we sang a line in a song I have sung a million times, but never heard the verse like I did Sunday.

Til on that cross as Jesus died
The wrath of God was satisfied
For every sin on Him was laid
Here in the death of Christ I live, I live

The wrath of God was satisfied. This trial is not God's wrath, even though it can feel like it at times. God's wrath was satisfied in Christ's death. My son is not enduring punishment, God's son did. Wow. 

So, Noah. I know you are all really reading this to hear about him. Noah is precious. He's adorable. He's handsome. He is sweet, he is strong, he is so far above me in courage and he doesn't even know what courage is. He is helpless, needy, and still very sick. Let me try to make it clear. He has been on a ventilator since the day he was born. He has gone through 2 surgeries and a heart cath within and month and a half. He has had more iv's, drains and tubes coming out of him than I have ever seen or could count on my hands. He went into and survived cardiac arrest. He has endured a nasty infection. He has gone on and off feedings multiple times. He has never been held. (i take it back, his daddy held him in the OR when he was born.

Since that moment, he has not been held. He has never been able to wear clothes. He is swollen. He is so terribly swollen it is so sad. I hate it for him. His skin is so tight in his abdomen, chest and face. He has gone through more in the first month and a half of his life than many people go through in their entire life. So...how is noah tonight?

Noah is stable. His numbers are good. His heart rate is steady due to the pacemaker. We are thankful for that. His oxygen saturation is good, for where he is in this process of fixing his heart. With every surgery it will get better. His blood pressure is decent as well. Until the fluid comes off of his body though, he can't get better. That is why I was so urgent in my posting this afternoon. The miracle we ask and need for Noah is for fluid to rush out of him and off of his body immediately. He needs to be relieved of the edema in his body now. He had gone down real well until dealing with the surgery yesterday. He is back to being really puffed up. He needs to pee and pee and pee to get the fluid off of him. He also needs to have gas, a lot. His abdomen is very swollen and full of air. He really needs that air to be released. Yes, he needs to fart a lot. 

Ava. Sweet, silly, lovely, precious, beautiful and smart Ava. She has been tossed around, pawned off, in limbo between places for months and it is finally taking it's toll on her. My sweet girl has been teething for awhile with molars and that has been terrible lately. She has kidney reflux and has had it since she was born, but she had to go through a vcug test to check up on it, a few weeks ago. She goes to the dr tomorrow to find out if she will need a procedure to correct it or if it correcting on its own. She also has an issue with her arm, exactly like her daddy's left arm, where her bones are not growing properly and she has lack of radial motion in her right arm. We will have to have it looked at by an orthopedic dr. She has been clingy, sad, tired, with a suppressed appetite lately. She misses me, then she misses nick. She gets pawned off on family all the time, especially the weekends so nick can come down here. She has been amazing, resilient, cooperative, sweet, silly and happy through it all, but right now she is feeling the effects of it all. She has been under the attack today along with her daddy, mommy and brother. She is weary and tired. I know my children will not remember this time in our life, but we will and you can bet that they will know how amazing they were/are and how much they did to encourage their mommy and daddy to keep trusting the Lord, keep pushing ourselves along and not give up. 

Prayer Specifics:

(this is going to sound cliche and cheesy, but it's my heart's longing) For God to be honored, glorified and exalted in our life. 

That Noah would feel the prayers, peace and healing touch of Christ. 

For God to help my unbelief

For Nick as leader of our home. 

For myself as the one, alone on the frontline 24/7

For Ava as she endures

Noah to release fluid. To get rid of fluid and come down in swelling in an enormous way. A miraculous and amazing way. 

For him to release air from his abdomen. 

To not retain fluid in his chest. 

To GET OFF THE VENTILATOR!!!

to adjust to that change when it happens.

to get back on feeds, preferably my milk, not formula, but either way.

to remain consistent in his heart stats. 

that he will get rid of tubes, less meds, to transition to a more "normal" baby.

to BE HELD BY HIS MOMMY AND DADDY

for ava to be well

for her arm to be healed

for her to have endurance to get through this with us

for her to be cared for in my/our absence. 

her kidney reflux stuff to be dealt with/healed 

For nick to get rest and to get through work each day

for myself to take care of myself

for my milk supply

to remain immersed in Christ and his truth, to not dwell on the bad or the difficult so much and try to refresh my heart and mind in him every day so I can be strong for my son and daughter. 

for people to come to Christ and for those that know him to draw nearer to him through our story. 

Thank y'all. Love y'all.

learning still, 

shaina