Friday, December 28, 2012

Memories in the Making

Memories in the making has been my theme this Christmas. It keeps me thankful and reminds me that this whole experience will be a distant memory someday that we will laugh about some, tell both our our children about and always hold dear. Spending Christmas in a hospital might seem dreary and sad, but not in a children's hospital!! I tell you, Cook Children's Hospital does it right. They are so wonderful and thoughtful in all of it and try to make each patient and their family feel at home and loved on. Noah got to make an ornament with his footprint, he got a stocking that has Cook Children NICU 2012 on it and pictures with Santa. (ava still hasn't had a picture made with santa,totally our fault) On top of that the hospital had us pick out some toys and books, etc for each of our children (ava included) and they were sent up to noah's room on Christmas Eve. So sweet. They have had beautiful decorations up all season and Ava likes to say TCHEE at each Christmas tree we come across and they are everywhere! haha. They have beautiful lights up outside with a big tree out front that plays Christmas music. It truly has been a magical time. If you are going to spend time, anytime, especially Christmas, in a hospital, make it a children's one. haha! My family has been here since Friday. A whole week already. Time does fly when you're having fun. It drags when I'm by myself. None the less, they have been here and have been a blessing to have. I have been able to take a break from being at the hospital all day, everyday. I have had lots and lots of Ava time. (she and I both needed that desperately...mainly me) Hubby has been close by the whole time, sister and I have been able to cook, laugh, visit, catch up, etc. Dad and Mom have been able to hide up in Noah's room and hang out with him lots, which they love of course. I'm just thankful. We made cheeseball and had shrimp (two traditional Christmas eve foods at mimi and pawpaw's house) We started a new thing for Christmas day lunch of chicken strips and the works. fun! Staci and I made the whole meal (not all from scratch, but the mashed potatoes for sure) haha. We've been to the mall, played in the Pirate Cove here at the hospital a lot. We've had fun.
Noah has had a good holiday and has made some progress we feel. He is hovering around 1 liter of oxygen right now. His saturations still plummet sometimes when he gets mad, but not as bad as they had been. He is still on pain meds, but just 1 dose a day. We'll see how they lessen the dose on him and maybe he will do better weaning this time. He is doing well on feedings. He is getting around 80 mls in 30 mins every 3 hours. sometimes a bit more. I am so so so so thankful for his gut to be working well and tolerating feeds. I know that we might still go home on a g-tube, but we are still practicing with a bottle and in the mean time he is keeping a regular amount of food down at a normal pace, just not through a bottle. He has speech come in and work with him daily on this right now, so maybe we will make some headway with it. What, the clot. What a weird thing. They did a doppler on the clot and it is still there. It has not gotten bigger. There are two jugular veins in the neck...inner and outer. The inner one has the clot and it is pretty bad, but the outer jugular vein has gotten bigger and has taken on the blood flow of both inner and outer. The clot is being nursed with blood thinners and it still might be able to break up and be gone, but it is a SLOW process for that to happen. The big concern around the clot issue is when they could do surgery #2 which is a very necessary surgery for Noah to continue to improve his cardiac function. So, we wait on the surgeon to get back from vacation (fresh and ready to go, thank you Lord) and see what he wants to do and when. So...I think that is all for now. We feel your prayers. We see God working. Thank you for continuing down this journey with us. We are beginning to feel the length of it now more than ever, but we are holding on and doing our best to keep a functioning schedule and normal pace for Ava, and a consistent support and presence here for Noah.  I am hoping to possibly have another partial week at home in the next month or so, as well as have my wisdom teeth taken out. :( :( My daddy is coming down here to nurse me and hang out with noah up here during that time. My father in law might be able to come down and spend some time with Noah while I go home for a long weekend perhaps. So, hopefully that will happen. We also would just like to get surgery 2 out of the way and decide on the g-tube stuff and get home as well. I mean, to be quite honest... but we take things a day, sometimes just moments at a time.
again, we love you all. thank you for the constant support and love.

Thursday, December 20, 2012

The Trenches

These last couple of days have been terrible for me and for Noah too. You see, Noah is basically a drug addict. He has been on morphine and other narcotics since he was born due to his surgery and post op. He has been on methadone and adovan as substitutes for the "hard drugs". They have finally gotten him off of the substitute drugs. Sort of. He is having terrible with drawl symptoms. Heroin addicts get methadone to help them come down. He is irritable, sweaty, frustrated, jittery (like the littlest things startle him), he doesn't get into a real deep sleep, so they decided to put him back on the methadone and adovan for another round of weaning. This way he can at least be a bit more settled and he NEEDS real rest. Anyway he can get it at this point. So, he is back on the pain meds and he is more calm. He is also on a patch that they use in cardiac babies sometimes, to help keep their bodies calm, in order for their oxygen saturation to keep higher. It is like a pain patch, but it delivers a small amount of sedation meds, constantly in order for his body to be relaxed. His heart rate has been a constant 120 for days because of this. It is a calm, but ok rate for him. In fact, his pacemaker is keeping it at 120, not lower.
I'm not particularly sure why I am sharing all these details. It is not easy to be vulnerable like this, to put out all of the hard details, the raw reality.  I mean it doesn't really make a difference for anyone to know every little detail, but maybe it gives someone a little bit of a detailed way to pray for him.
Want some more detailed ways to pray?
For his heart to be whole. I'm not being general. I'm being specific. May God truly make his left side of his heart there. Like, if God has to make it grow, the so be it. Whole. Working. Functioning. There. I know God is able. Pray with me.
For the blood vessels to his lungs to grow larger. They are quite small and it is a problem. He needs those larger to get more blood to his lungs.
For the clot in his top left part of his collar bone area (layman's terms) to be gone. Completely gone and that vessel to be healed and cleared of any other clotting areas.
For his oxygen saturation to continue to maintain above 70 on lower oxygen. (they did lower him to 2 liters oxygen today) praise God. He is so far, staying steady.
For his oxygen levels to his brain to be steady.
For him to be able to try out feedings at certain times, not continuous feeds. It is a step closer to him being more on track to bottle feedings. A semi-permanent feeding tube is still a big possibility, but I know my God is greater and bigger and mightier than feeding tubes. He can and is able to heal all needs and make the road rise up to meet Noah in this need. I keep praying for complete healing from all needs. I will not stop praying for it for the rest of mine or Noah's life. God is able.

I'm not really at a place where I have some lesson I'm learning or some sweet something to say about how God is so "gracious and gentle" with me...even though he is. I am just at a place where God is God and I am not. He will have his way with myself, my son, my little family that is strung apart all the time now. He will have his way. His ways are above mine. I have to trust him even when it is hard, even when it hurts and even when I have no strength left to trust him. That is when I have to just be limp in his arms and somehow let him do this, without me. Isn't that what he wants anyway? For me to let go of the reigns and let him drive.... I'm not sure I have even the slightest clue of what will happen next in our life. I don't even know what is next tomorrow. I have no use for a calendar or date planner. I know that at home Ava has dr appts coming up, there are lots of things going on at church that I wish I could put on my calendar, help with and be a part of. There are things that I wish I could do like make a meal plan for the week, go to the grocery store, vacuum, make the beds, play with my girl, have pillow talk with my husband. Those things are deep calling to deep, that is my calling and my purpose. wife and motherhood. Call me old fashioned or plain. Tell me I'm wasting a bachelor's degree, but I will tell you that there is nothing in life better than doing your God given calling and doing it with all your might. I suppose in this season of wife and motherhood, I am called to be uncomfortable, out of the ordinary, tired, strung out and completely spent in sacrifice and prayer over my children. See, every time the bad dreams creep in, the thoughts of "what if" and "please Lord, no" start to seep into my mind, I immediately call upon my Jesus and I know that's where he wants me. Constantly in communication with him. That is something that I will always take away from this experience, is constant communication with the Father. I cannot try to do things outside of who He is or His power. I am of no power or use if I am not doing the things He called me to do in His might. Whatever he has called you to do, do it with all His might. This road is far far far far far from over. This road is longer than I ever dreamed. This road doesn't end after we leave the hospital or after his second surgery or when he's three and done with the surgeries. This road could end at any moment though. Life is fragile. Noah's life is extremely fragile in this place and in this moment. Yet, if you really look at it, each of us, healthy or not, is unaware of our mortality. We, at any moment, might not be here. Savor every moment. Please do not feel sorry for us. Please don't ask when we will go home. Please don't ask if the doctors give us any timelines. Just pray, in the deepest faith you can muster, that God will heal our son and that we can all rejoice beyond any measurable means and worship God for hearing our cry and answering our prayer.
I am deeply thankful for every single person praying for us, for Noah. I am beyond words in gratitude for all the support, in its various forms. We are forever grateful and touched. We pray we can spread Christ in this place, in this season. We know that God can use this trial and time of deep need and sorrow (even), for His good, His purpose and His namesake. God will prevail. Always. He will save the day. Always. We have to be surrendered to what His ways look like, not how we wish they looked.

Noah is fragile, but God's not through with him yet. I am holding tight to the One who promises, because, He is faithful.

love y'all.

Tuesday, December 11, 2012

Find You In The Place I'm In...

Disclaimer: I started writing this last night and could not finish due to my eyes closing in tiredness. So I am finishing this up tonight. I am not changing any of it even though some things have passed, because it is now a day later. :) hope this isn't confusing.

Troubles chasing me again,
Breaking down my best defence,
I'm looking, God, I'm looking for you
Weary just won't let me rest and fear is filling up my head.
I'm longing, God I'm longing for you

But I will find you in the place I'm in, find you when I'm at my end,
Find you when there's nothing left of me to offer you except for brokenness.
You lift me up, you'll never leave me thirsty,
When I am weak, when I am lost and searching
I'll find you on my knees.

So what if sorrow shakes my faith,
What if heartache still remains,
I'll trust you, my god I'll trust you.
'Cause You are faithful and

I will find you in the place I'm in, find you when I'm at my end,
Find you when there's nothing left of me to offer you except for brokenness.
You lift me up, you'll never leave me thirsty,
When I am weak, when I am lost and searching
I'll find you on my knees, my knees.

When my hope is gone, when the fear is strong
When the pain is real, when it's hard to heal
When my faith is shaken and my heart is broken and my joy is stolen, God I know that

You lift me up, you'll never leave me thirsty,

Find you in the place I'm in, find you when I'm at my end,
Find you when there's nothing left of me to offer you except for brokenness.
You lift me up, you'll never leave me thirsty,
When I am weak, when I am lost and searching
I'll find you on my knees.

This song has been very instrumental in part my growth over the last few weeks. I am so thankful for the entire album it is on, but as Noah was getting his pacemaker put in over a month ago, I was praying and journaling and a song from the album came on pandora and so I bought the album and found this one. It is incredible and it has been an amazing song for me to cling to in many ways on many days. 

I haven't been able to get Mavah off of my mind or heart. I know that is for a reason. I have been able to lift up her family to the Lord often and I know they are clinging to him now in these moments that are so raw. I have also just been in a place of constant communication with Christ today...I have been "chatting" with him lots. We've talked about Noah, Mavah, Mavah's mom and family, Jeffrey Kelley and his wife and kids, William Taylor and his family, Kyle Henderson and his momma Chanci, Olivia and her parents, Tabor and his parents. All these families have illness and ailments that are frustrating, tiring, depressing, overwhelming and even sorrowful. Mavah is with Jesus now and her mom is still worshiping the Lord, now more than ever, even in her sorrow and hurt. Jeffrey's wife Noelle is a beautiful example of submissive and Godly wife as she finds her security in the Father even when it has to be the scariest time ever as her husband goes into brain surgery tomorrow. Tabor has HLHS and underwent his 2nd heart surgery. We met him and his parents at Cook's on our tour. They are a sweet family. Olivia was just born last week and has had her first surgery for HLHS. She and her parents are sweet and she is a fighter as well. William, our sweet William and his parents. My how they have helped keep us looking up and forward in this journey. We have watched them take up their cross and keep fighting each day as they trust the Lord with their sweet William and all that continues to go on with his brain and the aneurisms he has suffered from. He is going to have surgery on Wednesday for some corrective measures on the shunt he has placed. Kyle has suffered from a brain bleed and is needing a similar shunt and his mom and him are here at Cook's now but are from Canyon. She has endured the NICU with her first baby and is now enduring again with her second. All these people, in my world, who are enduring, trusting, pushing forward through it all. My heart has just been heavy for them, and for my own son as we are still looking at issues that we don't have answers for. 

God is working. He is so capable. He is able. Most important to me is that he is willing. It might not seem like he is working in any of these situations from a worldly point of view. In fact it might seem as though he doesn't care at all. He messed up. He made multiple mistakes with each of these children and in a Godly man. Why would he take a sweet 8 month old girl from her mommy's arms? Why would he allow a Godly man, age 30, with a precious wife and 3 sweet kids go through a long long battle with a brain tumor and now a 10 hour surgery tomorrow. Our friends with babies that have HLHS like Noah. Why do our babies have heart troubles? Why would Kyle have to have a shunt placed? God just fix our loved ones. Our babies. Someone's husband and dad. Lord, are you there? I'll get back to this... but first..

God has been using Philippians 4:4-7 to teach me some very important lessons. Here is the word...
"Rejoice in the Lord always, again I will say, Rejoice. Let your reasonableness be known to everyone. The Lord is at hand, do not be anxious about anything, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."

This scripture seems to get chopped up more often than not. I have always been comfortable quoting and claiming the part about not being anxious about anything but in everything by prayer and supplication present your requests to feels right and is encouraging. It truly is. BUT, God has been really pushing me to look at the verses surrounding those. 

First, he says to Rejoice. In some study I have found that rejoice is not an activity for a single person, in fact, it says "to share in one's joy". I think that God is trying to first tell us to worship him. First and foremost, come together and share in my joy. He tells us to do so, twice. He repeats himself like he knew we wouldn't believe him. We must worship him first before anything. 

Second, he says, "let your reasonableness be known to everyone". Weird. Reasonableness? The ESV version uses reasonableness. I have also seen, gentleness, moderation, humility. Basically, I feel as though God has been teaching me to be careful what I say, how I say it and to be considerate of all of that as I live life. In any situation, at any time in life. When we rejoice and worship him first, we can't help but have our perspective shifted and put in the right place so that we don't get caught whining, complaining and being ungrateful. There are times for those feelings and frustrations to come out and that is ok, but it says let your reasonableness be known to everyone. That is testimony, witness, living life in front of people as they watch. We must live what we believe. When we come forward in reasonableness and in worship, we can then trust when it says, "the Lord is at hand, do not be anxious about anything but in everything by prayer and supplication present your requests to God" I can come to the Lord confident in my requests and needs because I have worshiped him first, allowed my mind and heart to be reasonable and gentle, and then I can be aware of his presence, I can come to Him without whining and complaining, but with a sincere and humbled heart, pleading in confidence, the desires of my heart. He says, to let your requests me made known to God. When are heart is aligned with his, and we let them be made known to Him he is pleased because our hearts have melded into his and his desires are ours now. When we are in line with God and his will, our requests become so evident that Christ is leading us and in that communion and intimacy with Him we find, Peace of God, which surpasses all understanding". True peace. Peace that no one can know unless they know Christ. Peace that sustains a sweet wife as she sends her husband off to surgery tomorrow morning. Peace that carries a mommy into the next day after day without one of her babies. Peace that allows her to claim victory in Him, to continue to share Christ through her daughter's journey and now her legacy. Peace that keeps myself taking each new step, every day in faith that God has a plan. Peace that allows the darkest of situations to not destroy us. BUT, one of the best parts of this passage of scripture is at the end where it says that peace, "will guard your heart and your minds in Christ Jesus" Important. The peace that we receive from Christ, through our faith actually guards our hearts and minds in him. So, some people don't have a clue how people get through times like losing a child, sending a child into brain surgery, sending your spouse into major surgery, etc. It is in times like those that we are guarded from the negative that so easily seeps in. We can be guarded from that when we are saturated by God's peace, due to our reasonable minds and hearts that are caused by worship and rejoicing. 
This has been revolutionary to me lately. This has allowed me to not be bogged down or depressed by illness or death or surgeries because God's using all of it for his kingdom and his glory. It sounds cliche, but this is life. Hardships will come and it is just a matter of when and we have the opportunity to share Christ through it all. So many people look at Mavah's mom and they are shocked by her attitude and she will be the first to tell you that she is an emotional basketcase but she can be honest with Christ about her baby girl and just hurt and be sad, but in her worship and praise, she finds strength and in turn that helps her to cope. I know Noelle has been through the trenches, but I believe she would tell you that seeing the Body of Christ work lately on behalf of her and Jeffrey has been a tremendous blessing. I know that each of these families are trusting Christ and are thankful for that peace that transcends all understanding. 

I am finishing this a day after I started it. Jeffrey has come through surgery well and they received some wonderfully encouraging news. I know that William is stable right now but still needs prayers for tomorrow. Noah had a great day and is awaiting his heart cath for Friday to see why he is not getting weaned off the oxygen as quickly as we would like. Mavah's celebration of life service is Thursday. I have talked with Kyle's mom and they are doing full work ups on him in every area to make sure they don't miss anything. I'm thankful they are being taken care of and we continue to pray for answers and healing over that sweet boy. 

Today has been a heavy day of intercessory and I am beyond thankful that I am in a place that I can drop everything and just pray for a day. Even as I played with Noah today and held him, I was able to just focus my heart and mind on prayer. I spent a couple of different times today journal praying and reading. I have been reading a new book and it has truly been an inspiration to my prayer life. God is reminding me to pray big prayers. Pray beyond what I comprehend and truly believe that God is able. GOD IS ABLE. GOD IS CAPABLE. GOD IS BEYOND WHAT I KNOW. 
Thank you to all of you for blessing my heart. Especially, Noelle, Jenny, Missy, and Chanci. Yall are amazing women and I thank you for your examples. I know God has big plans ahead for all of us. 

I am resting in Him as I continue to lift up the needs of those close to me. God is able. He is so good, even when we don't understand Him. 

love and blessings,


Sunday, December 9, 2012


So, I leave town and Noah does "all the good" as my mom says. :) haha. Noah has made so much progress this week and  I am just so excited to get to see him tomorrow. I am pretty positive that ALL the love and spoiling Noah got this week from his mimi and tpaw was the trick. I am going to have to step up my game this week to even come close to that! :) haha. Here is some of the progress I can think of to share:
no more TPN or lipids :)
up on feeds
lower on oxygen
lowered some pain meds
lowered the steroid dose
photo shoot
lots of holding
no picc line
1 IV
working on bottle feeding (slowly)
a bath tonight
santa hat :) hehe

I'm just so thankful for all the progress. I am fully aware that God's timing his perfect and we might still have a ways to go, but we are seeing, before our eyes, God working in our son. Thankful and humbled.

So, going home this last week was hard, yet it was really really good too. I was so thankful to be in my home, with my Nick and Ava. We missed our baby, but we know we will get him home soon enough. It was great to cook in my kitchen, have friends over, go to family's house, enjoy and soak up the love of our church family and sleep in my own bed. hehe :)
I am thankful that I can come back here fresh and ready to keep going on this journey here. Thank you to each of you for your prayers and support through all of this. Love you all.


Our sweet friend Mavah is with Jesus tonight. We met Missy and her husband Seth and their 5 kids, including Mavah, at Cook Children's hospital. Missy was the first mom I have really connected with since we started this journey, here. She and I began to visit when we were neighbors in the PICU. Her daughter Mavah was born with Downs Syndrome (we call it Ups in our house) hehe. She was a beautiful little girl and along with her ups syndrome, she had multiple heart problems. That is why we met her in the D Wing of the PICU. She was 8 months old and precious. From the first time I met Missy I knew she was filled with the Holy Spirit and a desire for ALL people to know Christ. Her soul purpose in life is to make sure everyone knows Christ. Mavah was proof of that. Since Mavah's birth, 3 people (I'm sure more than that) have come to know Jesus as savior. Missy has been Mavah's biggest cheerleader, strongest advocate and a warrior momma. She was not too busy in all of that though, to visit and be interested in how Noah was doing and how I was doing. She is the one momma that understands what it means to be a "heart" momma. I'm thankful God put her in my life. Mavah, without trying, was an inspiration to many and it is mainly because of her mom and dad. I'm thankful to have had the privilege to pray over Mavah and Missy. To be in her precious room and around all the scripture on the walls, the Word set out on the table, the comfort in her room, was all because her Mom desired her to be surrounded by Christ at all times. I am thankful for the example Missy has been to me and I pray that in some way I was able to be a small bright place for her as well. Mavah will always be special to me and will continue to inspire me to be a mother that does not hold back in my faith, my prayer life, in my studying of the Word and love for my kiddos. She has a special place in our story and I pray that in honor of her and the friendship I have with her momma, I can raise Noah to know about Mavah and the influence she had on many people. I know that there will be hard hard times ahead for her family. I ask God's complete and perfect peace over Missy. My heart cries out to Christ for his arms to cover her. I praise God for Mavah's life and I ask that her life continue to shape people and draw them nearer to the King.

Love to you sweet girl and may Jesus wrap your family in his strong and loving arms,

Friday, December 7, 2012

for now...

Wow. What a week.

So, backstory...I've been gone from home since September 8th and when I got home Monday evening it was really hard to feel at home. I just felt like I didn't belong, but I don't belong in Ft. Worth was a rough night, but as the week as gone by, Amarillo (and it's tiny bit of charm) have hooked me and reeled me in. I have missed my sweet boy so much, but leaving home again is going to be really hard. This week has just been wonderful in so many ways. I have been able to sleep in my own bed, love on my baby girl, enjoy time with my husband, be in my kitchen, cook in my kitchen, work on my house, clean my kids' room, do laundry for all four of us, see friends, family, and just breathe a bit. I am   feeling refreshed in many ways and yet I am still really nervous and will never be completely ready for all the change that will happen when we do get home. Yet, we WILL come home and we will be blessed beyond measure to have our little family of four together. I have so much I need to share and unload from my heart and all God is teaching me...but I just can't seem to get it out. So, maybe as I get back to Ft. Worth next week I can rummage through all my thoughts and get them out.

Update that all want:
Noah has had a wonderful week with his Mimi and Tpaw. I mean, he is getting spoiled rotten right and left. haha. :) Lots of holding, singing to sleep, great long talks with his Tpaw and wearing a santa hat for Mimi. I'm so blessed to be able to have my parents there to keep us updated, and love on Noah all week. He has had a great week. Lots of weaning off of certain meds such as pain meds and steroids. He has gone up on feeds through his feeding tube. He has gone down on his oxygen quite a bit. He has had physical therapy come in and work with him and speech therapy even started using a bottle to see how he does with it. So far he has done well! GREAT first steps. I'm very proud and excited to see him and hold him. He is making lots of progress and we are so thankful. God has blessed us so much. I wish I could get my brain to sort through all the things going on, but for now hopefully this will work. :)

Here are some prayer needs and praises:

Praise Him for progress, bottles, clothes and lowered oxygen and increased feeds.
Thankful for my parents and their sacrifices and love for us.
thankful for our home and my sweet little family.
thankful for a loving church family, friends, and support system
Thankful for an amazing medical staff at cook's
Thankful for new friends we have met there

Pray for continued success for noah on the bottle with feeds.
For more oxygen weaning
For more medicine weaning
For rest for Noah

for safe travel going back
for safety as I begin a new season back at the ronald mcdonald house
for the holiday time to not be so heartbreaking as we are not all together or home together yet.
For ava as she continues to endure this whole ordeal. for her to stay healthy

Thank you all so much. we are forever and ever grateful to each of you for your prayers and love, support in every way.