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.


Tuesday, November 27, 2012

Worship from Whining....

to grant to those who mourn in Zion— to give them a beautiful headdress instead of ashes, the oil of gladness instead of mourning, the garment of praise instead of a faint spirit; that they may be called oaks of righteousness, the planting of the LORD, that he may be glorified. Isaiah 61:3

Tuesdays are always like this. In fact, Sunday at 2pm through Tuesday afternoon (sometimes wednesday), I fight tooth and nail with Satan as he tries to get a foothold in my heart. Sunday at 2 is usually when my husband leaves for the week, sometimes taking with him my Ava, sometimes my parents, even friends that have come in usually go home around then too. Everyone leaves on Sunday afternoons. Thus begins the sadness, loneliness, frustration and the road to the next weekend. All the joy of family time, laughing, holding my baby girl, being held by my hubby, the companionship of family and friends, the hope and strength of my support system drives north on 287 as I go settle back into A-4 in the NICU. Noah's worth all the pain and struggle, the loneliness and heartache, the restless heart and constant question in the back of my mind.
Why Noah?
The nagging in my mind never quits, why Noah, why us, why hypoplastic heart, why is he still here, even. Why are these weeks dragging on and on and why are the months skipping by me like nothing. He's already 2 months old. Where is the time going? My heart and my mind go up and down, up and down until I finally just break. The whining then's ugly really. I can get truly annoying, I'm sure, especially to nick. I ask the same questions, complain about the same issues, wonder the same things, etc. Same struggle different day. The grieving never completely goes away as I slowly begin to understand just how big of a deal this all is.
I really do rejoice in ALL the accomplishments Noah has made. I rejoice in the littlest of victories and I try to not see the littlest issues as major setbacks. Sometimes it all becomes mush and the littlest thing like a blood draw seems like he is being tortured to me. A monitor going off until the nurse comes to check it can become a sharp pain in the head. An echocardiogram to check heart function can seem like a huge opening for a flood of problems to come rushing in. It all just gets tiresome and negative after awhile. So today, as I have been struggling with all of it, (yet again), I realized that surely there is a way to use all of this heartache, questioning and even grieving....

I listened to Pastor Matt's third sermon in his latest series, "When God Seems Like the Enemy". It was the perfect timing to hear the words, "God isn't fair". First of all, because I needed a slap in the face to get me out of my whining fest and second because it reminded me that Christ dying for me, for you, for Noah, etc was not fair. He didn't deserve to be crucified. I do. He didn't deserve to go through what he did, but he went through it in obedience and worship to the Father. Worship. So, does that mean, that everytime I hear my baby boy cry because he is getting his veins dug into to get a blood draw, that it is worship and that I can send up my frustration to God but in the form of worship? So each day we find ourselves still in the hospital, still in ft worth, still spread apart, that all of this enduring is worship? Please, let all of this have a purpose, Lord. If all of these long days, long weeks, hard nights, rough moments, surgeries, tests, iv's, blood draws, therapies, etc etc all be a means to worship you. May the rest of our lives, be worship. I think of all the trips we will have to ft worth, to the dr's, for surgeries, for check ups, for heart caths, for follow ups...all the struggles we will endure with having a child with HLHS, all the stuff we don't even know is coming in life in general, Lord....somehow I can face tomorrow, knowing all of this is worship. Worship makes my tears meaningful and my struggle worth it. Worship is finally, somehow, becoming more than music. I am finally learning what it means to have a heart of worship, not just a head full of "worship" songs.
It is one of the hardest things to do, leaving your baby in a hospital room as you drive back to the place you're staying. But, it is part of it right now. None of this is how I would ever want my life to look like or anyone else's for that matter, but it is where we are at. So, I will try to find ways to adapt and be thankful. I am grateful for a husband who is patient with me, who loves me at my worst and encourages me to be my best. I am thankful for him and I know that God made us a team for a reason. I am thankful for him and how he takes care of our baby girl, all these days we are apart. Wow. There will be a day when we are at home, the 4 of us and we can close the blinds, lock the doors, turn off our phones and hide away. We can soak each other up and make up for lost time. I long for that moment that I am sitting with both babies in my arms in the recliner, with a blankee and a big long nap is shared.
I can confidently say, that would be considered worship too, at this point. :) Both babies, in my arms...they are both His anyway, He just allows me the privilege to be their mommy.

Noah had a pretty good day. He received blood and that is most likely for volume and I think it ended up helping his oxygen saturation so they could turn down his oxygen some. He got an echo done and hopefully I will find out how that went, tomorrow. I am also waiting to find out how his sonogram went to look at the clot he has been having. I don't have much to update on him other than that and when I get new info I will pass along. Please just pray that his cardiac function continue to improve. Please pray that he continues to be able to be weaned off of the oxygen now. Speech therapy will be coming by to evaluate him to see about starting a bottle. They are looking at changing his formula and maybe adding some of my milk to it. He has the wound vac back on til next monday. Please pray that his incision closes completely and is healed well by then. Hopefully he will get a lot of rest.
Thanks for the love and prayers.

Sunday, November 25, 2012

Tis the Season...

Christmas. Usually it is such a magical and fun time of year. Thanksgiving really is my favorite but Christmas can take an easy second. With Thanksgiving, I feel like it lasts from September 1st to Thanksgiving Day as the grand finale. (halloween is in there just for grins)...You know? All the leaves, the weather change, baking and soups. For 3 whole months you get to celebrate the season of Autumn and thankfulness. I just love it. Pumpkin this, spice that. This Autumn Thankful season has been quite different for me this year. I started out September packing up for what I thought would be a 2 month stay in Ft. Worth area. (2 weeeks prior to Noah's birth and the a month and a half for surgery and recovery) Surely we would be home by Halloween. He even had a onesie for the occasion, knowing we wouldn't get out of the house. Well, Halloween came and went. Then I thought, surely we would be home by Thanksgiving. Nick, Ava, Noah and I would be snuggly in our house watching football and getting leftovers brought to us. Well, that was Thursday. We weren't home. No decorations went up, no pumpkins were bought or carved. Candy was bought of course, Nick bought it and ate it I'm sure. haha. I did take Ava trick or treating and she enjoyed it. Thanks to some friends, she even had a fun costume without me having to go out and buy one. There wasn't any thankful tree or leaf crafts for Ava. We didn't make pumpkin mousse or watch football in our jammies on Sunday afternoons on the couch. Nothing about this fall was or has been "normal" as I've known it and enjoyed it for so many years. I did get to make my Mimi's dressing and it turned out pretty good. Her crescent rolls that I tried to make this year ended up as crescent biscuits I guess you could say. It was stupid really, but they tasted ok. Maybe I'll try again next year. We were blessed to be with Nick's local family here and were thankful for the warmth and fun of the day. My mom and dad sat at the hospital with Noah and enjoyed themselves thoroughly. My sister stayed in North Carolina. No one was in their usual places. Yet, we are thankful. Thanksgiving isn't just the tangible. Thanksgiving is more than that and this year more than ever we realize it. I could go on and on about what I am thankful for right now. God has sustained us and is continuing to as we go down this road. This is the road he picked for us. I don't know why and I don't like it most of the time, but I am realizing more and more that the abnormal, unfair and sometimes terribly painful road is hard, but it's the road that leads us to Christ and not a false sense of security or pleasure in "the comfortable". You see, Christmas trees, the lights, sounds and smells of the season that is upon us now are all lovely and comfortable and I enjoy them so much. I so enjoy decorating my house, enjoying Christmas music and parties, making goodies for Nick's work crew, wrapping presents and making crafts, but none of that matters to me this year. Seeing everyone else enjoy it is hard for me, because I have an already 2 month old laying in his crib in A-4 of the NICU and all I can think about is how our new normal is going to look like, not if all my stockings are hung. I can't enjoy the sounds of Christmas music because my family might not be "home for Christmas", but spread apart. I can't bake in my home, wrap presents in my home, play with both of my kids in my home. Nothing is how it is "supposed" to be this time of year. Yet, here we are. God is working on me in this. I accept the hand I've been dealt and I know he has a plan for our family. I know that the struggle that is going on in my heart and mind might not exist at all next year. I might be enjoying all I love again with 2 babies and a hubby there to enjoy it with. But, right here and right now, it stings. It hurts to see all the pictures of sparkly trees and little family stockings, just like it hurt to see all the pumpkin carvings and thanksgiving family pictures. Everything just hurts right now. But, there is purpose. There is a plan. It is worth it.

There was a card on a little package that I found on the counter when I came back up from eating dinner and it said, "there will always be a beginning and an end, but what's important is the journey in between". It's true. I'm learning, Nick is learning, Ava is growing and Noah is healing. We are all on this journey together and we will get through the holidays together. Somehow, even with Ava not being able to be back here in the NICU, we'll find a way to make this holiday season bright, because, after all, it isn't about us. It is about Christ. Without Christ, none of us would be here, I would not be able to enjoy my family, my children, having a home. Without Christ coming to earth, I would not have a chance to go through this hard time, this journey that is leading me closer to Christ, making me a better wife, mother, person in general. Without Him, there wouldn't be any of this. So we will find Christ and his blessing, love, hope and plan in this coming holiday. We will cling to him and know that His plan is the best plan. His hand is the strongest. His ways are the highest. His thoughts are the loftiest and yet the most intimate. I know He will remain our home, even when our circumstances seem so foreign.
Thanks for your prayers and love as we continue to make it through this.

Noah has been back on his feeds since Friday. His blood cultures have come back clear since they got them earlier last week. He got a new pic line placed so they don't have to keep digging for new iv's all the time. Hopefully that will help his veins to have some time to heal, his bruises to go away and for him to not be so irritated. He will be on TPN and lipids until he is on full feeds again. He is still having to have blood thinner administered in shot form. I pray that will be over with before we go home, but we'll see. (pray for no more clots) He has been resting a lot since we got to the NICU. It is so much more quiet and easy to rest here. He loves to be swaddled and will be getting to wear more clothes and things now. (the things you take for granted until you don't get to put clothes on your newborn)He loves his passy and will be possibly trying out a bottle sometime this week. We'll see how things go. Our next big hurdle is eating. Here is how I can explain it simply....
It takes a LOT of cardiac output (heart function) to eat, for a baby. Think of it like running a marathon for you or I. It takes so much for a little one to eat "normally". Sometimes a heart patient baby just simply does not have the cardiac function to eat and not get too tired, causing the baby to not get enough to eat, burn calories while they eat, or put themselves in distress while eating, etc. So, they give the baby a shot at it, to see how their body and heart does. They also watch closely to make sure the baby does not aspirate any milk into his/her lungs. After being on a ventilator for 51 days, it can be a hard thing for a little one to swallow. So they will monitor that as well. If Noah cannot do well with eating with a bottle he will have a g-button placed for feedings (a feeding tube directly to his stomach) that we will be able to go home on. We'll see how he does. All in all, we are just slow and steady with healing. He truly has made progress. Much progress. Sometimes it seems slow and non existent, but he really is doing good. Please pray:
for no clotting
for his cardiac function to be enough to eat normally
for his bruises and veins to heal
for him to lose more tubes and monitors
for his heart to gain strength and function
for swallowing
to not aspirate as he begins to eat

for me as I adjust to december coming in a hospital.
for nick and I both as we are still apart a lot.
for ava in all things toddler. She is basically a 2 yr old these days. crazy how big she is acting and the things she is doing at just almost 18 months. She amazes us with her words, her silly character and sweet spirit.
guess that's it for now...
thanks and love

Wednesday, November 21, 2012


We are officially the new kids on the block in NICU A wing. I miss the PICU D wing. I mean, I don't miss the open floor, the in and out craziness, the noises and lack of privacy....I miss the people. I have never had to spend more than a few days in a hospital before, so I have never really understood the medical field in the way I do now. Nurses are special people. Their job takes special care, insurmountable amounts of energy, long long hours, deep knowledge of pharmaceutical matters, what meds mix or don't mix with each other, which meds are given at what time, chart this, chart that, add and subtract this and that, change this line, clean that diaper....etc etc. that is all for one patient. In the PICU each patient gets their own nurse. They are in that critical of a place that they need that special care. Sometimes though, nursing staff is low and some nurses get two patients, with high needs for attention and they gets swamped and it is amazing to see how much of a team they are up there, the way the help each other out, etc. It simply amazes me at how much they handle on any given day. Through every hurdle Noah faced and conquered (with God leading the way) they got us through it, loved on Noah, took care of him and even me sometimes. The long talks, the comforting words, "we've got this, no worries, go rest"...anytime I called to check on him they would not complain, but just let me know all was well, what the plan for the day was, and sometimes what was wrong and not going well. Most moms don't get to go home at night and sleep 8+ hours. Sometimes I feel guilty about that and then I remember the other sacrifices I'm making as a mom and getting sleep at night is actually not something to feel guilty about. I finally feel like maybe I've earned it just a bit. I'd gladly give up watching my child go through 2 open heart surgeries, numerous IV's, ventilator, feeding tube, wound vacs, no clothes, not holding him for a month and a half, etc in order to have sleepless nights with a healthy baby at home. So, I don't worry about getting sleep at night as much anymore, because I know I can't take care of him in the capacity that he needs, but he is in the care of nurses that can. I try to sleep and rest so that I can at least be functioning and aware during the day to take on the all the information and keep moving forward with him. I know I don't have to carry the load alone or at all, I know to lay my burdens down at the foot of the cross, but this whole journey IS my cross I'm to bear right now. When he says, "take up your cross and follow me"....he means it. Back to nurses. I miss Jill, Laurie, Floyd, Jennifer, Aly, Dr. Duncan, Dr. Meyer, even Dr. Gemeli. They do an outstanding job. From post op, through cardiac arrest, through multiple weeks of no progress, swelling, then the pacemaker, etc. They never gave up on my son. They never got too tired to care for him, cheer him on, help him in every way possible. They got us through the dark times and celebrated through the great times. The cardiac wing of the PICU at Cook Children's Hospital in Ft. Worth is hands down the best place our Noah could be. But, here we are, in a new part of this journey in the NICU and we have new nurses, new dr's (besides our cardiologists) new rules, new schedule, new rounding times, new everything. again. Lord knows we're weary of it all, but He continues to sustain us. So, I pray that the nurses in the NICU love their job as much as our other nurses do. I pray blessings over each of them here because it can be a hard job, full of long days, nights, little sleep, lots of orders, very little thank you's, poop, throw up, blood, etc. Thank a nurse if you know one, be gracious to them when you need them, don't complain, but use manners. Be thankful for them and be patient with them. I'm forever thankful for our nurses, especially in the PICU cardiac wing because in another couple of months we will see them again after surgery 2 and then again after surgery 3. So, we'll be back with them again and I'm just thankful that since we have to be back, we know we will be in good hands.
There is not much to update on Noah today, except that we are waiting on blood cultures to come back since he had that little bit of blood in his stool yesterday. The xray came back ok they said. They stopped feeds, have him on iv fluids, antibiotics and are now waiting. He is sleeping sweetly. I am not bothering him because yesterday was just terrible for him. They moved him over here and had to get him settled in, which took awhile, then they had to stab at him for an hour or more to get blood drawn. So, he NEEDS and has EARNED a day of sweet sleep. It is nice to just sit in his room, quietly and let him rest, allow myself to unwind and just enjoy the day together. Amidst the stresses and frustrations, God gives us both green pastures.

So, Nick, Ava, Dad and Mother are coming down tonight. Mom and Dad are going to hang out with Noah tomorrow for Thanksgiving (still can't believe it is tomorrow). Nick, Ava and I will be together with the Kings and other family from both of their sides. I'm making my mimi's dressing and crescent rolls and I'm thankful I get to carry that on. I need to make them, for her, (even though she has the best seat for thanksgiving ever, next to Jesus) for myself and just because. Remembering her over the last few months has been a big source of encouragement for me through this whole thing, but I do have my moments when I wish I would miss her call and she would leave me a long silly message. I'm thankful for her legacy in me and will be happy to share her food with this new side of the family that God has given us.
We're thankful that Bob(nick's dad) and his wife Carrie will be able to come to town for part of the weekend. We are glad Carrie will get to meet Noah and Bob will get to see him again. All sewn up, and much better than when he left the last time.

Please just keep praying for Noah:
this blood in stool issue to be resolved
for him to be able to start learning with a bottle next week
for his entire digestive system to function properly
for his cardiac output to be enough to sustain him in order to eat well off of a feeding tube.
for his oxygen saturation to remain in the 70's to low 80's.
for his bruises to go away (that one's for momma)
for his hair to grow back (that one's for momma too) seriously, he has patches of shaved hair...sheesh.

for travel safety for my family
for my pops, mom and aunt dawn as they go through this first big holiday without Mimi.

Thanks to ALL who participated in the fundraiser last weekend. WOW. We cannot put into words how much we appreciate and love each and every one of you. We are blown away by God goodness and his love through all of y'all. Amazing. thank you can't be said enough. I hope and pray that you can catch just a glimpse of how thankful we are.

I suppose that's all for now.
love you all.

Tuesday, November 20, 2012

update for now

I cannot believe it is THIS week. In fact, Noah turns 2 months old on Saturday. That is unbelievable too! Sometimes it's sad to think about the fact that Noah is almost 2 months old and he's still not home, but we are thankful that is is HERE and he is doing well now. He is making such huge strides since the pacemaker procedure. I feel like I have lagged on the posts lately, partially because I have been busy being up at the hospital with him, getting ready for this past weekend of family coming in and then thanksgiving coming up this week.
Gosh, I have so much to catch y'all up on. I have possibly already covered some of this, but I'll start back around Wednesday of last week. We were rocking along pretty well and Noah was getting lots of nice rest, with  no new changes. Friday came along and Noah got to be extubated from the ventilator! YAY!!! This was such an incredible milestone for Noah. We have now moved into the NICU. We have our own private room. It really is nice, crazy quiet and much more comfortable. He got to wear a Cook Chidren's tshirt today. He looked more like a normal baby. It was cute. We got settled in to the NICU finally and then they changed his diaper and there was a tiny bit of blood in his stool and so they took all the measures to make sure nothing is wrong with his stomach, intestines, etc. The xray came back ok, so they are waiting to make sure blood cultures come back clean etc. Frustrating, since we started the day so great. But, hopefully it is nothing. we'll see.
I am really tired of updating, keeping up with it all, truly, but I know we have awesome prayer warriors who keep up and I will continue to keep updating. I'm thankful for the prayers and the love from everyone. I can't say it enough. I don't know how to say it anymore than thank you.
Maybe I will find some time and mental energy soon to post a more detailed update. For now, please pray for my stamina to keep taking care of myself and keep positive. We are now in a new place, new nurses, new dr's (besides his cardiologists), new everything it seems. So, here we go again. :) gets tiring, but we are one step closer to home. Most of the time I am glad about that, sometimes I get scared, really. So much that will happen to get home, so much change when we get home, etc. Just lots to process, every day.
That's all for now. I'm just tired and out of updates for now.
thanks as always,

Monday, November 12, 2012

I Surrender All...

It's 6:30 on a Sunday night, probably around 1995 or 1996 and I'm sitting in the 3rd pew up from the front on the right section of the sanctuary at First Baptist Church Canyon...we seemed to always sing I Suurender All at "sunday night church". I liked singing it because it was one I knew and I could sing the alto part in the hymnal because I was learning to sight read in choir. More than that though, it was a simple time in life. What earrings to wear with my casual outfit for church that night, or which fast food place in town should we all go eat at after church? What homework did I need to finish before school the next day? That hymn just takes me back to a time in life that was easy, simple, lovely, sometimes obnoxious, but blessed. I didn't know what surrender meant then, but I'm thankful that I had the raising and stability in my life that has allowed me to learn about true surrender in this time in my life.
There have been a lot of things happen over the course of a few months that have truly made me surrender my control (or what I think is control), my wants and desires, my comfort, my plan, etc. Obviously the diagnosis of HLHS for Noah was something that I had no control over and I had to surrender my comfortable, simple, happy little life to begin to adjust to the adventure and road that was ahead. There have been times when this road has been smooth and there have been times on this road where I found myself weary, laying on the side of it with bloody feet and dried out eyes, thirsty and all alone. (so it seemed) This road has been one where I have had to daily put aside my ideas of what things should be and surrender to what things really are. Yes, your son is 6 weeks old and has never been in clothes, your son was 6 weeks old before he was ever held by his mommy, your son will always need special care for his heart, your son will have multiple more surgeries in his life, life as you knew it will not ever be the same. Nothing will be the same. When most kids go to the hospital they go home well and people move on with life. When Noah goes home from the hospital we move on with life, but in a completely new way. Reality can be tough. Surrendering what we know and what we are comfortable with is even tougher. BUT, when you truly begin to live in surrender, you begin to see just how particular God is about our lives, our needs, our dreams and our struggles. God truly does have all the details worked out, but we are so in the way of letting God work, seeing him move, and feeling his touch because we hold on so tight to our control and our ways. Sometimes the things in our life aren't such bad things, if we take the time to look at it as a means to grace. Noah has a heart condition that many babies have died from. He has a road ahead of him in life that is not going to be easy. There will be more dr visits and hospital stays ahead. I never wanted to take this road or to watch my baby struggle through the first 6+ weeks of his life and beyond, but if we hadn't been put on this road, I would not be the person I am now. It sounds so cliche, but it is truth. If he had not put us in this place, I would not know the grace that has been poured over me.

Jonah 2:8 "Those who cling to worthless idols forfeit the grace that could be theirs.

Surrender those idols. The idols of worry, doubt, control, busy-ness, over reacting, money, etc etc. To truly experience the grace and freedom that is available to you, you have to let go of all that is keeping you down. I'm thankful for those who have helped keep me supported. Your love has allowed me to continually come back to the Lord and learn to start letting go of things and rest in the Father's grace.

Noah is doing so well. This weekend was a restful one for him. I am not sure if I had mentioned that he was going to need a chest drain put in so finish draining some chest fluid post surgery. The drain they took out was no longer draining where it was. Well, over night Saturday to Sunday the fluid drained and they did not need to put in the additional drain. Praise God!!! He has just kept de swelling every day. He is looking more like a 6 week old baby now and it is wonderful. They increased his feedings. He is on a elemental formula and tolerating it well. Maybe he can be on my milk again at some point. We'll see. He lays awake more often, as a normal 6 week old and he has been held twice now. Looking forward to more of that this week. He is doing well and will have his wound vac on a little longer to help heal his incision. He is such a precious boy and I am so blessed to call him mine! :)
Thank you as always for your continued prayers. I am thrilled to be giving y'all praises and exciting news. Prayers have been answered in front of my eyes! thank you so much to all! We love you guys!!
Hopefully more news on the ventilator tomorrow.

Photo: Noah is getting used to having my camera all up in his business:) He is CUTE!

Sunday, November 11, 2012

Date Night, Nail Polish and Brownies.

This has been a great weekend of refreshment for me. I picked Nick up from the airport Friday, after having a nice holding session with Noah and then going to buy a new shirt because he leaked chest fluid on me since he got rid of a chest tube right before. haha. Nick and I had a nice afternoon and evening just hanging out and enjoying each other's company. We hadn't seen each other in 2 weeks, so it was wonderful to catch up on each of our kids and each other. We enjoyed a nice dinner before meeting Lauren up at the hospital. She had come in earlier in the day and just went to hang out with noah and have some quiet time to herself. Yesterday was such a good day. We all slept in, took our time getting ready and then went up to the hospital. We got to say hello to Noah for a minute. They decided to put in a new arterial line so they won't have to prick his heel every 4 hours for blood gas tests, heprin level tests, etc. So, they had to do that and so we left for awhile. We had lunch and then Lauren took the King's family pictures. So fun! They all had a great time and Nick and I had a fun time watching. :) Such a fun family and Lauren is always finding creative ways to capture families. Thank you Lauren!! I'll plug her business more in another blog. We love loo. :) Dinner was great, with the kings' and then we came back to the house and just enjoyed veggin out. Amber, Lauren and I painted our nails, Amber and Lauren made brownies and we watched football, looked up stupid youtube videos and skyped with Amber's new fella. I don't realize how much I miss and appreciate "down time". I have a lot of down time at the hospital, but it is alone time and that makes it really easy to get lonely and think a lot. With some girl time it was nice to just laugh and take it easy. My heart is full. Nick went up to the hospital while we goofed around. :) He said he was doing well and was crying when he got there(they must have changed his diaper or turned him on his side or something, he always cries then) haha, but Nick said he got him calmed right down and he was glad to spend some time with him. God is so faithful and good to us. He has allowed me to see Lauren more in the last 2 months than I ever imagined after they moved to Galveston. We have been able to connect with the Kings, Nick's cousin and family, since being down here and we are blessed forever for that. I am just so thankful for the community God has allowed me to have, even in such crazy time, especially in such a hard place in life for us. I am thankful and I recognize that God did not have to give me such a support system. He didn't have to allow us to be able to have a home and family to open themselves up for us. He could have had me stay at the Ronald McDonald house this entire time, alone. He could have had us be many more miles away from home than we are, and he didn't. He gave us support and love. He gave us so many detailed things to get us through. I will forever be thankful for the weird and crazy time in life.

For the real update:
Noah has had a great week. Started out by getting the pacemaker on Monday. He needed it to stabilize his heart rhythms and it has worked. His heart rate is staying normal and his blood oxygen levels are staying where they need to be too. He is still on the ventilator, but they are weaning him off of it slowly. He is doing well with that. I'm really hoping that he will get extubated this week, but God and him are in control of this whole deal, so we will see. He had gone to full feeds, but his tummy wasn't quite ready for that, so they backed off a bit. He is still on blood thinner and they are keeping his blood thin enough to flow freely and get to where it needs to go. He is still on lasix and another diearetic to help pull fluid off and it is working. His kidneys are doing well enough to push the lasix and stuff so that is good. Once the fluid is off real well, they'll see about taking him off of lasix and letting him keep fluid off himself. Give his kidneys a break. He has been laying there awake more often, for long periods of time. He has a little hanging toy that is a bright colored turkey. He likes to look at it and he has even grinned once or twice for me. He really has made progress. Thank you for praying. I really am weary of trying to thank everyone enough. I want y'all to realize how amazing it is to see prayers answered. For instance, I asked for a miracle for my baby on Tuesday. I got to HOLD Noah on Wednesday. It was such an amazing feeling to have him close and know that we are on the road to recovery enough that I could hold him, tubes and all. Now, granted, it will be easier to hold him without all the tubes. :) Nick has not been feeling well enough to hold him because we don't dare get close if we have a sniffle or a cough. Nick's had both. (the wind here has been like home the last couple of days, arg) haha.
So, overall, Noah is just doing well and I am praying that we get through this sunday with no big events. Things always seem to happen on the weekends, so I ask the Lord for a simple sunday of rest for my baby boy.
I suppose that is all for now. Thank you, as always, for your prayers and love.
I am also blown away by the fundraiser efforts of Brad Duggan. He has blown us away with his generosity to plan such a neat event coming up on saturday in Canyon. We are humbled beyond words. Truly. Check it out on facebook. Baby Noah Fundraiser. Incredibly blessed by him and all who are helping to put this together. WOW! We will be here in Ft Worth of course next weekend, so we won't be there, but we are hoping to skype or something to say hi to everyone! We love you all and are so grateful and thankful for the support.

Wednesday, November 7, 2012

My Little Turtle

Slow and steady wins the race... right? Well, Noah is my little turtle. He is just slowly and steadily winning this race. He had a good night last night and then had a great day today. Besides getting to snuggle with his mommy, he was able to go down on the vent some, he started feeds again, he maintained good heart numbers, peed a lot, even pooped. He really has gone down on swelling, even though I see him every day and it is hard to tell, I think he really has gone down some. He is still on lasix and another diarhetic, blood thinner, tpn and lipids, and strong pain medicines. He is not on as many sedation meds, so he was awake and aware this morning which was nice. :) he just looked around and was very busy trying to figure things out. His eyes are turning brown. :) :) :) He is SO my kid! Ava looks nothing like me, but my sweet boy does! :) hehe yay. He got to be held by mommy and his mommy was so so so very thankful and happy about that. Maybe if he is a good boy and mommy bribes the nurses, she'll get to do it again tomorrow. hehe

Truly, he had a good day. He made some progress and any progress is GOOD progress. The plan right now is to tweak meds off and on for getting rid of fluid, to wean him off the ventilator slowly but surely and to up his feeds again. Not sure I can think of anything else.

Ava has started to feel a bit better. She has been really tired and clingy. Her appt with the urologist was good. We got updated on her reflux and got the plan of action for her. All pretty good news. She is teething still, but it seems to have subsided some. She seems to be perking up a bit. I pray so hard that she will keep holding on with us as we get through this time.

Thank you all for praying. Thank you for lifting us up, praying for a miracle and not laughing at me for it. Thank you for the support. We are so very thankful.

Let's PRAISE the LORD for his mighty hand in our life and on our baby boy!! I am thankful for progress. It is such a blessing.

Thanks and love,

Yet, I will rejoice...

Habakkuk 3:18 – “yet I will rejoice in the LORD, I will take joy in the God of my salvation.”

Yesterday was terrible. I had not slept well, I woke up down, the nurse sounded negative, I fed off of that. I sat depressed in the big comfy chair and watched shows on Netflix for hours and hours. I did not feel like trying, I did not want to get up and go to the hospital. I did not enjoy getting a phone call from Ava’s dr’s office about having to get her arm looked at by an orthopedic dr (another blog all together), all the insurance stuff that goes with that, blah blah. I was frustrated with so much. I wanted to quit. I wanted to throw in the towel. Since May we have been learning what our new normal will look like. Since September 24th I have gazed upon my son and asked the Lord many time, why noah? Why a heart defect? Why no progress? Why a pacemaker? Why won’t his body heal? I truly was on the road to the pit again. By the afternoon hours I was holding on for dear life to the hem of his garment, begging for him to show up. (like he ever left) Each week has had its ups and downs. I go through different emotions each day and most of the time I am fierce with confidence and a big smile as I get to the picu D wing and into noah’s cubicle. I know Noah needs my strength and needs my voice. I know that is what I can give him right now. Yesterday I had no words, I had no confidence, I had nothing to give noah, not even my voice. I finally did try. I was just emptied out so much I had nothing to give my son, nothing to keep going on. My wandering heart, weary. My longing arms, tired. My mustard seed faith, almost dropped. My light at the end of the tunnel yesterday was knowing that I had some special visitors. These three people are some of the Godliest, genuine, humble people I know. They took time from their schedule, their trip here, to come by and love on myself and my Noah. I cannot tell you how satan wanted to get me to try to not have them come see me. I tried to warn them that noah didn’t look good yesterday and I was real low. I didn’t know if they really wanted to come up if we weren’t at our best…(its just how I process sometimes) I know satan was trying his best to not let me be rescued from the pit of despair I had found myself in all day. They came. I was never more happy to see people, than when I pick up my hubby from the airport each weekend and when I get to see Ava after weeks apart. Truly, it has been over 2 months since I have been in fellowship with these mentors and suddenly there they were. It was like a lifesaver had been thrown out into the waves. That ocean that always stops at the shore, as matt preached on last weekend, I’ve been drowning out in it lately and then that lighthouse light came on, the lifesaver was thrown and I could get pulled to shore, cough up the crud, lay there and breathe. They wrapped me up, fed me, and loved on me. They were Jesus to me and I was able to refocus, refresh and then move forward from that place. I’m really not sure how much they realize it meant to me to have their presence. Their prayers for our son fell over him like warm blanket on a cold day. Noah soaked them up, as did I and it gave us each the fuel to keep going in the right direction. That is the beauty of the body of Christ. It is the hope of the gospel. We have a rescuer. We do not have to drown in whatever pit we find ourselves. We can cry out and know that He himself will drag us out, wrap us up, feed us and love us through. Christ will pick you up, right where you are. You don’t have to get to shore yourself, clean yourself up and then come to him.

Our associate pastor at Family Life is Matt Johnson. He has started a 3 week series called, “When God Seems Like the Enemy”. I watched it online ( last night before I went to bed. I can tell you, I felt like he was sitting across from me at the table and preaching directly to my heart. I urge you to listen and then the next two weeks go back and hear  the messages either at Family Life or online. I went to bed at peace. I slept better than I had in awhile. I awoke a few times to random thoughts and negative thoughts about noah and rebuked them and went back to sleep. (he is ever with us, he truly never leaves us, especially in our rest) So I woke up for the day and went directly to Christ. I had been so convicted that no matter how much time I spend with him during the day, at the hospital or wherever, I had to start the day, not just fill the day with him. I meditated some more on the message Matt gave. I soaked up some amazing music, got in my journal and focused my mind and heart on God’s promises before I even thought about going to the hospital. I got ready and got to the hospital in time for rounds and noah was awake and looking around. I held his hand for awhile and then pulled up a chair and sat beside his bed. Yesterday I could not approach his bed without a fight. Today, comfortable and enjoying time with my baby. Thankful for that interaction. One of the hospital chaplains came by and we visited. I always feel weird when they come by because they don’t just come out and ask you, “are you a Christian?” but I am and I want them to know that without sounding defensive haha. Anyway, he was so pleasant and we had a wonderful visit. It was after he left that noah’s nurse came up and asked if I would be in favor of holding him… WHAT! Of course!! He is still on the ventilator, multiple tubes and drains, but YES! So, they got me set up and got him moved to my arms, tubes and all. It was the best 45 minutes I have had in the last month. Just peaceful warmth between the two of us. The special part of our holding time was that we got to cuddle underneath a very very special blanket that was given to us last night. More on that later. Just know for now that this mommy was given her miracle this morning. I had called upon our prayer warriors and asked for a miracle  yesterday. In my struggle and loneliness I asked them to pray for a miracle for us. For noah. It came. I held my baby boy for the first time. I do not believe it will be the last. But, if God chose otherwise, I’d be satisfied with his goodness to me in that very moment. So thankful. For I rejoice in the middle of hardship and trial, for God simply digs us out of the pit and rejoices over us. He sings over us with love and my how it fulfills every longing when he gives us the desire of our hearts.
I would like to hope that even if I didn’t hold my baby boy today that I would still be rejoicing. I have tried everyday, even in the hard times, to say, I trust your character God, even when I do not understand your ways.
Thank you Lord for your covering, for the prayers of everyone, for the love of the body of Christ, for the amazing amount of support and love from all.

It’s worth it. The nearness and the intimacy that I have with Christ is worth the fight. I don’t like this situation at all, but I know that He is being honored through our journey. I’m honored to be Noah’s mom now and will always be. He has brought me closer to Christ than I ever thought possible.