4 Months of Noah....

I want to let you know that some of these pictures I have not posted online because there are some private things on here, but now that we have gotten through these parts of the journey, I feel that we can share with you, prayer warriors, some of Noah's milestones. You'll notice I put some of his pictures with his scar, also known in the cardiac world as his "zipper". This was very private to us at first and now it is his symbol of life and God's constant hand on him. Please know that we appreciate your prayers for Noah and us. We could not and cannot continue down this path without your prayers. Love to all! Enjoy!

Shaina

 Birthday and day after!

 post norwood surgery

                                                                    post pacemaker surgery

 no more ventilator!

 headed to the nicu!

 first smiles for mimi!

 First real outfit

 First bottle

 First Christmas

 My hero!

 Smiles for mommy!

 Talkin to sister on the phone

 Go Cowboys!

 sweet snuggles

 tummy time and bouncy fun

grins!

Family time

Sister love

post Glenn surgery

Starting to feel better each day!

Thank  you all for your support and love! Someday each of you will meet Noah and he will know just a tiny bit of how much he is truly loved. 

Thanks!

Sssshhhh

So, my Bible study I started recently out of the book called, Glory Revealed, by David Nasser discusses how God reveals himself in various situations in life, etc. It has been a great study so far. The lesson today was about God "quieting" us with his love.

The Lord your God is in your midst,
    a mighty one who will save;
he will rejoice over you with gladness;
    he will quiet you by his love;
he will exult over you with loud singing.

Zephaniah 3:17

"quiet you by his love". I always thought this meant, he would calm me by his love. He would silence me in a way that meant, "be quiet for once, hush child, you're fine, calm down" Part of me took comfort in that and then this study helped open my eyes to more than just that view. I want to share with you because I think there is someone out there that can relate. 

Have you ever had a moment in your life that took your breath away? I'm sure some of you can come up with that moment quickly. For me, the moment before I walked down the aisle, the moment Nick yelled out across the OR, she's here! The moment I heard Noah scream across the room and Nick say, "8lbs 2oz". Those moments took my breath away. They quieted me. I had no words (I know, a miracle) haha. Those moments were incredible. There have been smaller moments, like a sunset or a beautiful choir singing, a symphony or the smell of the mountain air. Those things make me speechless too, but there are moments in life when it's big. I've learned recently that those moments that God "quiets" you by his love, aren't always easy or pretty either. Sometimes he quiets you with his love by bringing in peace in the middle of a terrible situation. It was a Sunday, (lots of you know sundays are hard days for us) This one was particularly hard. Noah was hanging on by threads, waiting for surgery the next day. We didn't know if he would make it through the night. Nick and I sat in a booth in the cafeteria and asked each other the hard questions and tried to answer them, as best we could. We never thought we would be discussing the possibility of organ donation or other issues such as those, but we had to face them, in case. The dr's were clear with us that they would let us know when the time came where Noah couldn't handle anything else. That moment never came. Noah went through surgery just fine and today he smiled big. In those deep moments, God quieted me by his love, because even in the darkness of that hour, I had peace. I didn't have words to ask him, I was done begging and pleading, I just sat in the silence of trust. I sat in that booth today and was suddenly quieted again when I was reminded of where we have come in just a few weeks, since that day. Noah is still with us, he is progressing and making strides. He quieted me by reminding me of his goodness. In thankfulness I had to sit and just list the ways he has blessed us, even in the midst of all of this crazy. We have never needed anything during this time, all things have been provided for and for that I am grateful. I am thankful and I am humbled. I am quieted by the love he has showered upon us, even in our deepest time of hurt and need. Such grace. Such love. He lavishes us. Daily. Notice it. Take time to notice it. I realize I have an abundance of time to realize this, look for it and notice it. I know that once I get back home with 2 children, one who needs constant attention and the other a busy toddler who will need to adjust to having a new little one in the house as well as catching up for lost time with mommy, a house to clean, meals to make, laundry to wash, etc. etc. There will be days when it will be harder to notice the love, take time to soak it in and make the effort to dig deeper. I'm finding the more I dig, the more I want. 

Anyway, that's all for now. Just some thinking and sharing. Challenge yourself to think back on times when God has done something so lavish and lovely, beautiful and overwhelmingly amazing that it left you speechless and in awe....He quiets us with his love! :) 

update on Noah:

Noah had another good day. He was riding along at 2 liters of oxygen but needed a little more, so they bumped him up to 3 for a little while. they might go back down to 2 tonight. He is going up on feeds by 2 mls every 12 hours. Once he is at a full feed they will quit TPN and lipids. He is resuming his physical therapy, occupational therapy and speech therapy. Speech therapy is working with him on nippling with a bottle, for feedings. Here is the deal on that and where we need prayers. Noah has never had a the chance to really learn a bottle at all. He is 4 months old. I am not scared or nervous that he can't learn or won't learn. I know he can. It can just be frustrating and as a cardiac baby, he does not have the best cardiac output right now to eat out of a bottle, so it will take time. Here is the process. Right now, he is just simply uncomfortable with a paci in his mouth (he kinda gagged today when I tried to have it in his mouth), so the speech therapist is  just putting her gloved finger in his mouth to help stimulate his mouth, trying to get his tongue to cup her finger and try to suck. He wasn't thrilled about it and kinda gagged but he swallowed his secretions that he developed as he tried to chew on her finger. So, that is a good sign. I'm sure some of you speech therapy friends of mine (robbie, Breann, Amber, Krisite) can relate to this. Anyway, once he starts to accept her finger more and cup her finger with his tongue and try to suck, she will try putting formula on his paci and putting it in his mouth and see what he does. I will continue to be trying to work with him with his paci and using a gloved finger as well, when she is gone. Once he starts to suck again on a paci we will try small amounts of formula in a bottle. slowly. most likely we will have to add some cereal to it to thicken it up, but we just keep trying and adding things to the progress. So, please please please pray over noah and this next step. This is a huge thing. We can get a g button and go home on that, work on bottle feeding at home and do well with it, but it would be amazing if he went home without a g button. Anyway, that is a big deal for us as we begin this process again. He will hopefully get a swallow study done at some point to see how he is swallowing and making sure he is not aspirating. What else...he is doing well with physical therapy and as he gets some more tubes out, I will be able to hold him and work with him more on that as well. 

here are some detailed ways to pray:

for continued progress of the function of his heart

For his oxygen saturations to continue to stay steady as they wean oxygen

for him to need less and less pain medicine

for him to continue to do well on feedings- increasing until he gets to 28mls an hour, then they will adjust and start doing "bolis" feeds. More food in less time. 

for him to do well in therapy, begin to catch up with development

speech therapy- and all that comes with that. sucking, etc. 

thank you all. We are so grateful for all  your prayers and support. Always. 

much love,

Shaina

There's No Place Like Home

Home. The comfort, the familiar, the coziness and personal. Home is lovely. Home is ours. Home sweet home. So much about home is good and wonderful. So much about home right now is, I can't say wrong, I do not think that is the right word, but it isn't right. I feel slightly out of place, out of practice, like the girl who went far away for college and has come back for a break and the whole time is spent packed full of family visits, eating out, catching up, laundry and then packing to leave again. Home doesn't really feel like home. Neither does Ft. Worth. I suppose you could say, "home is where the heart is", and if that is true, that is why my heart feels torn in two. Parts of my heart are 6 hours away, two different places, no matter where I am, my heart is not whole. It hurts a lot. I love my home. I love cooking in my home, lounging around, playing with my daughter. I love knowing where I am going without looking it up first(which I am getting much better at in DFW by the way), but I like the smallness of this silly, flat, somewhat smelly town. I love running into people I know and "catching up". Especially now, since I am generally a stranger in DFW. Now, I can exchange conversation, a hug and a huge blessing by seeing someone I've known for so long and being able to just be known, be loved on, be encouraged....it's nice to know people. I know that if for some reason we ended up moving, we would adjust, meet people, get settled in, and make a life wherever God put us. I know we would, but he hasn't and this is still home and our life is still here and we have placed roots here, next to the ones that were placed here for us. So, as I sit here this morning, in the quiet (Ava is at her nana's, Nick is snoozing)I can't help but feel like there is a big void everywhere I go. I know this home has never met Noah, it's never heard his cry, it's never had him play on it's floors, take a bath in it's sink, watched me rock him in the wee hours of the morning and fall asleep in the chair with him. This house has a void and so when I'm in it, I feel it. Heavily. When we are out running errands and I find something for Ava, I automatically look for something for her Bubby, but it goes in a bag, to be packed up tomorrow. "maybe Bubby will wear this before it's too big, I tell Ava." "I'll be sure and bring it with me to the hospital and hopefully he'll get to wear clothes again soon." Ava just smiles and nods, assured by my words that she doesn't entirely understand yet. This house, the routine here, the daily life doesn't have Noah in it and so when I'm here I just feel awkward.
Yet, when I am in Ft. Worth with Noah, it's not home at all, it is lonely, it is a place I would like to just visit, not live. I could adjust to any place if I needed to, as I have while being there, but it's not mine. The sunsets aren't as pretty, the traffic is crazy (but Amarillo still has worse drivers haha), I don't get to cook, be creative, play with my daughter, do all I wish I could do for my family.... I won't lie, sometimes it is nice to just be responsible for only yourself and no one else. There are days I stay in my comfy clothes and journal, study and read all day in between times of holding Noah's hand and just staring at him when he sleeps. Hospital life has its pros and cons. It does.  I always try to find the pros. The cons are just obvious. Staying in the Ronald McDonald house is a blessing and my 45 days are up Monday, so I have to check out and I very thankful to have family to stay with so I don't have to get a hotel or anything expensive like that. The RMH is as close to home as I get when I'm down there. The space is personal and when Nick and Ava are down it is as close to alone family time that we get. Now that Noah is back in the picu Ava can go back and see him. She loves him so. The constant battle of packing, not being settled anywhere for very long, eating out all the time (except for meals at the rmh, which are sweet homemade meals most of the time, by groups and volunteers)that is a whole other blog in itself. Again, I am so thankful for family and even sweet friends in the dfw area who take such great care of us. But, there's no place like home and right now, home doesn't even feel home.

As I have struggled with this "home thing" for months now I was reminded in the gospels by how much Christ was homeless. He did not have a "home". He did not have a lawn to mow, a kitchen to keep clean, a washer/dryer to use, a bed to call his, where he made a dent in it because he had it for so long. He didn't have a closet full of clothes or a couch with his name on it. He didn't have a Sunday afternoon nap recliner or a big tv to watch the game. He did have The Father. He did not cling to all the stuff, He clung to the creator. He was ok with "not belonging". He knew he was passing through. So, I can find rest in the fact that Christ knows what I feel, but to an even more drastic place. He knows deeper than I, how it feels to be unsettled, wandering from place to place, alone and out of place. He knows. I can rely on that, trust that and feel better knowing that he had to say "see ya later" a lot, he knows how unsettled feels and what the long road between places feels like, yet his feet touched all 6 hours of that pavement....I only have to sit comfortably in my jeep as the rubber meets the road and does all the work. This is a season and Jesus was a wanderer for a season as well. He went home, and has settled in there nicely, as well as prepared a place for me there. (and you if you choose) I know that here on earth, this is a season for our family as well. I know God desires us to be together, in our home. In his time.
Jesus knows. Whatever you are dealing with.....he knows. I didn't think there was much to compare to my situation in the Bible, besides, a boy who needs healing....but, when you ask him to show you, he does. Be willing to listen and seek out his answers  yourself, in His word. They're there.

I realized as I was driving in to Amarillo Wednesday evening that, no matter how long I've been away, I don't need to look up where I am going when I hit I-40. (well, I don't need to look up any of the way, it's basically a straight line from here to the hospital) haha. My point is, I don't need to look up how to get home. I know it by heart. I know how to get there and I know which is the best way. I didn't forget just because I haven't been here but once in 5 months. If you've been away from "home" for any amount of time. If you've known Christ and wandered off....you already know your way back. It's just a matter of turning the right direction. You don't have to "find your way back", you can just turn around and go home. It, He is right where you left him.


update: Noah has been enjoying his Mimi and Tpop a lot this weekend. They are so good to us to go down there and stay with Noah while I come home for a few days. We are so blessed that Dad is retired and mom has an incredible amount of days she can use to do just this. So very very thankful. He has and is having a slow time with feedings again, post op. His body just takes a slow time to heal. I expected this as we went into surgery again, but it is hard, even when your mind knows it can happen a certain way. So, we are having to continue to be patient with that. He is doing all he can to heal and get better. He is such a fighter. He is being weaned on his oxygen today, his incision looks great and wound vac is off. He is resting well at night and awake and happy during the day. He has some coughing, normal. He has less spit ups so far today and we are thankful. He is doing well and I am so thankful for the progress he is making daily, even if it is slow. :) I am so thankful for the PICU and the staff in the Cardiac ICU wing. God is heavy there and I am so thankful for a handful of Christian doctors and nurses who love my baby boy.
thank you for praying. always. I cannot express enough how thankful we are. The prayers of  thousands are being heard and answered in God's timing.
I love you all, deeply.

Shaina

Did that just happen?

How does one even begin to write an "update" about that one time when their kid almost died? I'm not sure I really have a way of starting this particular update with anything other than, "here goes nothing".

I truly am at a place where I have been able to step back, take a slight breath and will now attempt to let y'all in on one of the darkest 4 days of my life. Please just know that I don't write any of these updates for sympathy, pity or to get attention. I do not wish to come across as one "bragging" of what we have been through or how much we have had to deal with etc. I write because it releases tension for me, it allows me to experience and learn from each step of this journey and I am able to rewind, see things from a new perspective and I am able to give God glory where it is due.

So, I realize I hadn't updated the blog in quite awhile anyway, but considering all the crazy lately, I am just now getting to a place where I can sit and unload. Bear with me, this particular post will most likely be quite lengthy.
Thursday the 10th, began the longest three days, ever. Thursday the 10th was supposed to be a routine heart cath day for Noah. They were hoping to get some data, possibly put a stint in his shunt and that would allow more bloodflow through it, etc. They got him prepped, they got down to the cath lab and they began. I got a call a couple hours later and she said that they were not able to find any access in order to do the cath so they would be sending him back up to his room and that was that. Dr. Quo came in and let me know that Noah's veins were just so "blown" that there was no access. The one vein they could go in and use they wanted to keep clean and clear so Dr. Tam (our surgeon) could use it for Noah's Glenn surgery. So, he came back on the ventilator from that and they decided to keep him on it because his saturations were running low and he was already on 6.5 liters of oxygen at 100% flow....he needed help. So, a couple hours after they got him settled back in he threw up (expected sometimes after a cath/anesthesia, etc) A little while later, the nurse was doing some evaluations and she went to get the charge nurse to look at him with her and they came back and looked at him but went in to emergency mode. He had become very discolored on one side and they were doing what they could to get him to regain color and saturations. They got the nicu dr over there and it was a good 30 minutes of tweaking settings and all sorts of things for them to get his color back and his saturations back up. I called nick and we got him a flight in on that night, instead of driving in the next night. So, Nick got there Thursday night and we got a little bit of rest at our RMH room and got up to the nicu for cardiac rounds the next morning. There was not a lot of talk about what they were going to do for Noah, but they new he needed surgery. It was just a matter of when. Dr. Tam was wanting to try to get to Tuesday to do it, but Noah became more and more critical as time went on. We decided to stay with Noah in the room overnight on Friday. We switched between the "bed" and the recliner. It was a long night to say the least.  He became more critical and basically they decided to give him as much sedation as they could to keep him comfortable. Pain meds as often as they could and they were able to place a picc line so he could receive all of his fluids, etc. By Saturday night they had him on a paralytic drip in order to keep his body from doing much of anything. His pace maker kept his heart from dipping below a certain level, the ventilator was breathing for him and he couldn't really do anything but lay there, slightly paralyzed and sedated, waiting for something to happen. The PICU cardiac intensivists came by and checked on him often and would make adjustments and just see how he was doing. Dr. Tam came by on Saturday and let us know our options were limited, but he felt that surgery to do the Glenn was our best bet. Transplant was out, (God closed that door for us without us having to make a decision), so we wait. If he could make it to Monday that was what Dr. Tam wanted so he would have his A team of anesthesia, nurses, staff, etc. If for some reason he had to do it more emergently he could. So, we waited. There were moments in that weekend where we thought we would be saying goodbye. We had the conversations with the Dr on call in the NICU (whom we grew to like very much), and our nurses about what happens if/when Noah were to go. What processes happen, what decisions have to be made, who handles it, organ donating, etc. All of those things came up periodically. We also had the conversation of when to stop treating and let Noah go peacefully or not. Nick and I prayed, we talked, we rode the waves of the weekend as they came and we decided on things. We had a peace with knowing that God knew what was going on and we wanted to give noah every possible chance we could as his parents and surgery was included in that. He made it to Monday. We kissed him like we might not ever get to again. They took him into surgery and then we waited. Some more. We found a booth with an outlet and parked it for the day. Lots of waiting and praying, facebooking and game playing happened as we waited.

Your heart goes to places you didn't realize it was allowed when your child is in the valley of the shadow of death. As he lay there helpless, we sat by helpless as well. There was absolutely nothing we could do for Noah, other than cling to our Lord. So, that's what we did. We began to cry out and plead. We begged the Father to spare our son. Yet, at the same time, we realized that if God desired Noah to be with him, we would have to be ok with that as well. Everyone has to realize that mortality is real. We are not promised tomorrow, healthy or not. Yet, in those moments, it seemed more real than ever. As your son holds on for dear life and you can only wait upon the Lord, it all becomes very clear....

life is fragile.

Noah came through surgery well. Dr. Tam even seemed pleased with it all. He was able to complete the glenn and he left Noah's existing shunt in. They got Noah settled in the picu and we were able to go back and be with him. He was alive. Noah made it through surgery. We went in our head both scenarios all weekend and the scenario of him making it through surgery had happened. Which meant, with all the joy of a successful surgery meant the long road of recovery was staring at us in the face. We know by now that Noah had never fully recovered from his initial surgery. He never came of oxygen all the way, he never got to really practice or get good at drinking a bottle, he didn't get to have any time at home before this surgery. "real life" hadn't happened for noah and then bam, he's in post op recovery mode again, on top of the lack of recovery he was dealing with before surgery. We didn't go into surgery with a semi-healthy kid needing his next step procedure. We barely made it to surgery just praying this would keep him alive. So, our post op saga would continue. We were relieved and thankful though. Truly. We have faced death twice with Noah and God has rescued him both times. I am not sure why, right now, maybe we will never know, but we are thankful and we are aware that Noah is beating odds every day. Obviously there are details of this story that I leave out on purpose. The darkest time of our life happened just a few days ago (hard to believe a week has passed) There were dark dark moments for Nick and I and we will always have that weekend as a time of hardship and fear, but not bad fear. We learned what fear of the Lord is, in a deeper way than we have ever known.

So, what now?

Well, recovery mode is in full swing. Noah is trying to continue to release fluid, get off the ventilator (that is never an easy thing for him), reduce medications, then get off oxygen, be weaned off of pain meds, possibly learn bottles (possibly get a g button) etc etc. I don't know what time scale we are looking at. Only God and Noah can determine that. So, again, please don't ask when we will come  home. We don't know. We do know that we are thankful for every day we have with Noah. Hospital or not. So, we thank the Lord for each day and pray for strength as we endure all the ups and downs of post op.

Right now, we are still critical. Noah is still on the ventilator. He needs to lose some more fluid and maintain better saturations before they extubate. They tried to resume small feedings, via his ng tube, but he threw up and some of the formula just stayed in his tummy undigested, so his gut needs to wake up as well. He is on lots of pain meds, constantly and is on 3 different heart medications right now. One for blood pressure, one for arrhythmia, and one for "function" or the squeeze of the heart. So....here we are again...praying for pee, praying for less meds, praying to get off the ventilator. O Lord, you have heard our cry and saved our son from death's claws, but now we are in a treacherous place that feels like being stuck in the mud.

We truly are grateful beyond words for your continued support through all of this. I was able to keep everyone posted as needed on FB and I am thankful that at the click of a mouse or the touch of a phone I have thousands of prayer warriors on their face for our son.
I was so thankful to have hundreds of scriptures sent our way for Noah. We read them over him and ourselves as we needed our heads lifted and our hearts strengthened. Thank you. Thank you.

I'm tired. I weary beyond words and I have yet to have the moment when it hits me that, my son is alive and I can rejoice and be glad....I am in a middle place where I am joyous and thankful (don't get me wrong) but I am cautious and tense as we wait each day and what it brings.

I'm quite finished for tonight. Maybe I can give you more insight to the teachings Christ has done in my heart through it all later. For now, much love to all and thank you to each of you for your constant prayer support. Take from this update and pray accordingly.
We love you all
Shaina

The latest...

Well. 3 hours and 45 minutes and this day can be over. Another day, another up and down roller coaster on this journey. Where do I even start to update y'all. A lot of it is stuff I've already posted and a lot of it is new. It is a big jumble, so bear with me as I try to weed through it in the best way, so that those of you who like to keep up, can.
I walked in this morning to Noah getting a chest xray. It came back clean and clear. Noah has been dealing with oxygen issues for the last few days, more seriously than usual. He has been trending low and today got serious. He was perfectly still, happy, and continued to stay in the low 60's, he even dipped into the 50's for a bit. I was just sitting in his room, watching, waiting, praying. There is absolutely nothing I can do when he does this. There were a few times he rubbed his face and pulled his canula out of his nose, so I can put that back and try to settle him. I try to rub his head (he likes that a lot) and help put his paci back in his mouth. The only things I can do are minimal, but somehow I know he knows its me. So, I muster up the strength and try to stay calm and positive for my little man. He pushed through and fought today. They gave him extra pain meds, and some mild sedative to help his body calm down. When he gets agitated and frustrated his sats plummit so they wanted to keep him as calm as possible. He has slept most of the day away because of that and I'm thankful. The neonatologist on call came by and was quite honest. He really didn't know why Noah was doing this. Sometimes I think they overthink in some situations, but none the less I'm thankful that he is honest and communicative with me. Noah's body is telling us one thing for sure. He needs the next surgery in the 3 stage process. The kicker is, he has some risks involved right now that aren't what we would want to have. The risks for surgery 2 right now are that he is not quite 4 months yet. He has a clot still. He has a small pulmonary artery and small vessels going into the lungs. Here is a diagram that is helpful to me to see kind of what Noah's heart looks like and what surgeries will help to do.
http://www.chop.edu/img/cardiac-center/hlhs-surgery-three-stages.html
So, there are risks with every surgery but he is vulnerable to a lot of things right now because of the clot etc. They have what they call "cath conference" tomorrow. They will present Noah's case to all the surgeons, dr's, cardiologists, cardiac anesthesiologists, PICU intensivists, etc. They will all try to come up with a plan for Noah for the next steps. PLEASE pray tomorrow, around 4, or all day, but especially around 4 as they start their meeting that they can share ideas, put all of their amazing knowledge and experience to work and make a plan for Noah. There are a lot of dr's on his team that are Christians. I know they are faith driven men and I ask that they allow the Spirit to flow freely in that place and that God has reign as they seek out the next steps.
So, we are at a waiting point again. We wait on Noah to see if he strengthens any or if we just try to keep him stable until stage 2 surgery. We wait on the team to come up with a plan. We wait on the Lord to show himself through all of this, each day, even in the little thing. Like today...
It has rained on and off today. Rain is a direct communication from God in our family. It is a sure sign that he is near. I'm thankful for that. It snowed crazy on my parent's wedding day, it rained the day I was born and the day Staci was born. It rained the day Nick and I knew we'd be together for the rest of our lives. Rain is a sweet promise. So, he sent me rain. Even if things don't turn out how I want them to, He still promises to never leave. Then, our sweet clinician, Janet, came by. Y'all, Janet Turner is an angel in disguise sometimes. She comes at odd moments, but today was a divine one. I was struggling. I canceled my appt to get my wisdom teeth xrayed (another blog entirely) because I could not stand to leave Noah's room. So, I was in here, frustrated a bit and shedding a tear on and off. She came in to see how  Noah was doing and then sat down and we began to visit. Janet is thorough. She doesn't forget. She is a data collector of sorts. She is borderline OCD with her job. She works long hours and fills her life with his job. She cares. She truly cares deeply about each baby and each family she works with. If we had gone home after surgery 1, she would be the one who would call every morning and check in on us. She would have taught us all we needed to know to go home etc. But, for today, she just came by to catch up. She was able to talk me through, medically, because she is an RN and has been doing this for years. She walked me through, talked me through some of my questions and fears and didn't make promises, but gave me some hope. Gave me some positive encouragement about where we are, that we are not the first baby to display these signs, have this struggle, stay here this long, be this sick, have risks for surgery 2, etc. Like I said, she didn't make promises, she knows better, but she walked me through some of the insecurity of it all. She is a woman of faith. You can tell because she tells you. She served me like Christ would. She came in, listened, talked, and then offered to get me a starbucks drink. Seriously, she is a saint. ;) She came back awhile later with a vanilla bean frappucino, because I don't like coffee and a cake pop. Truly, she went above and beyond her duty, to love on me and keep me going. She hugged me and reassured me that we are in the journey, but there are some glimmers of hope ahead. We can get through.
I mentioned to a friend of mine the other day that I tend to try so hard for God's approval of me. I tend to get into a works mode, Martha's long lost great great great great great great etc grand daughter or something. I try so hard to please God for results. If I pray enough, study enough, learn enough through this, bless enough people, stay positive enough that he will heal my boy. He doesn't work that way and he has gently reminded me of that in the last few days of this roller coaster. So, my goal in all the crazy today, was to not resort to making deals with God, try to pray more just to get results out of him, but to cling and hold tight to him, even when i was tempted to cry out and ask why. I got in the Word, I asked for prayer from my front line shield bearers and I waited. I waited for today's storm to pass, for this particular battle to be over as I hunkered down under the shields of those who God has so graciously put in my life. Thank you. So, there were times I felt like I should have been doing something. Times I felt like if I prayed more or studied more he would be pleased and miraculously heal my boy right there. He is able, but he knows what is best, when it is time and for who's glory it is for. So, in it all, he provided a helper to get me through, physically talk me through it and listen. He provided a means to get Noah calm and stable. He has provided the opportunity tomorrow for discussion to be had about Noah and possible plans be made. He is holding us all. He knows our concerns. He knows the risks that hover. We are sure that He has a plan and as scary as it is, whatever it is, He will lead us. He is not abandoning us. He IS. He truly IS the I AM. 

Thank y'all for walking this road with us. I know the last few days I have seemed grim and cynical, sometimes rude. I want to apologize for that. I know I get somewhat of an excuse in some ways for being a grump here and there, but there really isn't an excuse. I want to constantly be thankful, not hateful or rude, jealous or envious, even if it is hard to see all those out there with healthy families, together families, doing normal things and enjoying normal lives. It is hard to hear people complain about the petty things when I have a 3 and a half month old fighting for his life. I do not have room to whine though and God chose us for this life, this journey and blessed us beyond measure with Noah. Not a burden. So, please forgive me if I seem rude and ungrateful. I just struggle, as a crooked human, with the desire to have normalcy and health cover my family again. Bear with me and love me through it.
Since I have felt whiny and a bit selfish lately I wanted to try to express some of the things I am thankful for and all the good God is showering us with in the midst.

Noah is alive. Still. Thank you Lord.
Ava is alive and well. She is learning SO much. She makes us laugh every day. She is smart, beautiful and funny. I am not just saying this because I am her mother. I have outside references. Every nurse who sees her picture is drooling over her and saying, "awww you have to be missing her so much, what a doll". so ha! :) it's not just me. :)
Nick is my sweet, silly, hard working, dedicated and loving husband who is patient with me, strong to the end and is ROCKING the single dad bit like a boss. I mean, seriously. This dad has Ava fed, bathed, books read, prayers prayed every night. He dresses her up in the cutest outfits, does her hair, (makes her keep her bows in), plays with her, takes pics of her for me, and videos. He loves on her and each night tells her, these are kisses from mommy and proceeds to kiss her lots. He loves me endlessly. He listens when I whine. He is patient when I freak out. He is beyond strong. He is not afraid to be weak, but He rarely shows it because He knows I need him to be strong. He is selfless as he takes care of everything at home in my absence. Except keeping up with the budget and bill paying, he is incredible. I love him. I love him more everyday. Separation has been an interesting season of our marriage. Some choose it. We didn't. We have embraced it in our deepest valley though and have let God do amazing work in our marriage as we have been a part. communication has been worked on (obviously) and we have been able to miss each other and that makes time with each other even more sweet. Thank you Nicholas. You're my best friend and I'm thankful for you.
Our families are so amazing. My parents and sister are my strongest support. They love me through my issues and keep me in prayer constantly. I'm thankful. They sacrifice so much for us and I am beyond grateful. Nick's family has been a constant support on the home front, with keeping ava and keeping nick and Ava company when the weeks get long. We are blessed.
We are a part of a church body who endlessly pray and encourage us. Nick was at church this weekend and texted me to tell me he was going to take ava to her class and then go be social for us. haha! Thank you honey. Seriously though, we are blessed beyond measure by their presence in our life. With that, the entire body of Christ, not just the part we serve along side weekly. The body of Christ as a whole, in each nook and cranny, have come together for our son, across the world and for that, we are HUMBLED. There is not another word other than humbled. Thankful and grateful too. We cannot express enough how amazed and comforted we are by your love and prayers. Truly. Wow.
We are thankful for the Ronald McDonald House. They have provided a comfortable place for us to be close by Noah. Without having to live in the NICU. We are thankful for them and their support. If you ever desire a place to serve, there is one in most cities with a hospital that serves kids. I know Amarillo has one and of course, Ft Worth and Dallas. Just check and see. They are always looking for people to cook and serve a meal for the families, for supplies for their pantries, etc. I know as we get home, we will be a big supporter of the one in Amarillo. You can save coke tabs and take them to your RMH. They collect them and receive money for them to help support their needs. I have collection boxes that are cute for the office or you can keep a vase on the counter or even a ziploc bag. Give them to the local house or save them and I'll get them to the one here in ft worth. :)
We are thankful for local family here. Thanks for your support and love. we always have a place to stay and people to keep us company and loved on and for that we are so so thankful.
The nurses and staff here are wonderful and take such great care of our son.
My parent's are celebrating 30 years of marriage this month. On the 23rd. I WANT TO CELEBRATE WITH THEM with a PARTY or something, but I know its not happening this year, so we will celebrate 31 like no one's business. haha!
We are just blessed. Even in the midst of it all, we are thankful and blessed.
Thank you for everyone who prays, who has given support in various forms, who love us and check on us daily. We feel your love and support. We know you are walking this journey with us. Some in the middle of the night, some when they first wake up, some as they lay down and drift off to sleep. There are little kids who pray for our baby right after they thank God for their mommies and daddies, there are men and women who have seen me grow up who are on their face for my child, daily. There are people who have hurts of their own, life happenings that are tough, but still stop to pray for Noah. We notice it. We are thankful for it. Don't stop it. We have a LONG journey yet ahead. Hard days are promised, doing it alone is never going to happen though. Thank you thank you.
As we move forward....here is a list:

pray for noah's stability as we wait for stage 2 surgery.
pray for the clot to be gone in Jesus name.
pray for the surgical/cardiac team to be on the same page with the next steps.
pray for his pulmonary artery to strengthen and as he grows, grow too.
pray for his blood vessels to the lungs to strengthen and grow
pray for his blood flow to stay strong to get to stage 2 surgery
pray for stage 2 surgery to be part of the solution to his needs.
pray for his other systems to remain healthy
pray for him as he endures.
pray for us as we endure
pray for all the continuing logistics to work out
pray for stamina as we are still separated so much as a family
pray for his heart to be HEALED in Jesus name. For his glory. For many to come to know  Him. (i'm talking, that he has a whole heart, unexplainable whole heart)
Thank him for his power and all he has already done and is doing in Noah and our family.
Thank him for his sustaining grace over us and seek out ways he is sustaining you today too.
be thankful
I know we are thankful for him and his unending grace.

thanks for staying with us,
Shaina