Saturday, July 28, 2012

the latest

What a week. I mean, this time last week I was home from a day of saying goodbye to my mimi as she entered heaven that morning. The next few days were a whirlwind of family, plans, meals, arrangements, services, etc. A day of partial rest and then the next day I left for Ft. Worth. I made it to Wichita Falls on Thursday evening and Staci and I ate at Genghis Grill. :) be jealous. so yummy! We rested and got up early for Ft Worth on Friday. We made it in great time and even had no trouble with parking, finding our way around and getting where we needed to be. We're a good team. :) We were even early. We got to the Echo appt and things went fine. Dr. Roten, our cardiologist confirmed the HPLH diagnosis, which I expected. She said that everything looks routine at this point. She was able to give me a decent outlook on the process we will go through from birth through the second surgery. She expained just how serious this surgery will be and all the recovery, etc. She didn't sugar coat any of it, but she was go gentle in the way she explained it all. I was so thankful for such detail and for, as hard as it was to hear, all the difficult details as well. No parent wants to hear that their baby will have open heart surgery, no parent wants to have to watch their little one suffer, fight for their life as they recover from that surgery and not be able to "do" anything. I won't go through the whole list of details and process that will occur, because you will live it with us as it happens. For now, I can tell you that the first month of his life is going to be a WILD ride. Lots of things happen in the first month, from birth, surgery, recovery, feedings, etc. We will come home at some point after that month and we will have a whole new lifestyle that includes daily O2 saturation checks, weight check, feedings with most likely a button for at least the first 6 months of life, possibly a year, depending on how he does learning a bottle. There are lots of little details that we will just come to at that point in his life.  We will most likely deliver at 39 weeks, he will end up having his surgery within 3-4 days of his birth. Recovery in the hospital will be at a minimum a month. My recovery, I believe will be much easier than with Ava. So far I have had great blood pressure, little to no swelling and little weight gain at all. so happy! I think my recovery will be remarkably easier and for that I am thankful. I can be all I can be for my baby boy.

Nick, Ava and I are going to be going down to Ft. Worth together for the next appt. We will meet the surgeon, Dr. Tam and see Dr. Roten again as well as my doctor, Dr. Howard.  We will get a tour of the hospitals, have more questions answered and discuss when I will be staying in ft. worth for good before delivery. Most likely, I will be going down to stay at around 36 weeks. He'll be delivered at 39 weeks, so not too much of a stay before he's born. Dr. Roten's office is calling the Ronald McDonald house for us to get us on the waiting list so that we will have a "home" away from home for awhile. We will be staying with some sweet family before he is born and I know some of our family from here will stay with them as well, when we get a place at the RMcD House. I can stay at the NICU as much as I want, but they suggest, for obvious reasons, to be close by but at a place where I can get away and not be at the hospital sometimes.

So many new details, information and things to anticipate. I have been able to go through things in my head and digest most of the information we were given this last visit. I struggle sometimes with the "why us", "why my child" "why me", why why why Lord. What is it that we did that would allowus to have to deal with this and yet in the same breath, I praise Him for finding Nick and myself worthy of parenting such an amazing little boy, who has already touched many lives. I struggle with doubt and wondering if I will be strong enough to make it through all of this, will I be able to be a good mommy to both of these precious babies with all the technical stuff we will have to take care of? I could go on and on about all the doubts and questions, but I keep finding that God doesn't have answers for all my questions right now, but he has lessons to be learned in all of them. I WILL learn from this. Noah will not remember a thing about this, but he will have a mommy throughout his life who will be better and empowered through this experience. Nothing about this road we are on will be easy, but it will all be worth it. At some point in our life, each of the hurdles we are facing will be proven worth it, by the knowledge, experience and lessons we will have gained. I know I am scared at times and constantly nervous about all the little things I can't control, but I am finding comfort in the fact that I have never been in a better place with Lord in my life. No doubt. I am relying on him, seeking him and asking for all I can get from him to learn and gain His peace in all of this. I know he loves me to seek him and I love to be close to him and feel his comfort.

Here are some things I ask for prayers for.

continued health for myself and noah.
nick to be able to get off work when needed at various times.
for Ava to continue to develope and grow wonderfully- even through all the craziness.

travel and time spent in ft worth before Noah's birth, for Ava and I. For nick as he is back here at home during that time.

For Dr. Tam (surgeon) and Dr. Roten (cardiologist) Dr. Howard (OBgyn) staff of both hospitals.

That noah's body will be devinely prepared and ready for all the turmoil of surgery and recovery.

continued wisdom and peace.

finances, obviously. haha

For all the people who have and will be touched by our son Noah and his testimony. May God be glorified and honored through Noah and our family. May people come to know Christ through our son's journey. Noah means "peace" and even when things get tough and hard to swallow, God has covered my mind and heart with peace. I know his name is no accident.

Thank you all for continuing on this journey with us. Your prayers and support make this bearable. I still can't believe this is happening to us, it all still seems surreal in many ways, but I know that it will all become very real very soon.

love you all. Thank you so much again.


Thursday, July 19, 2012

Thank You

Well, it has been a few days. See, I told you I would do this. I would write and get it all out and a few days later I would have more to say. :) At least this time no one has to hear me whine or complain. :)

I just wanted to thank you guys for loving me through this and for all the prayers. I can't find the words to say besides thank you for all the encouraging comments and messages, texts etc. and we haven't even really got to the hard part of the journey. I am thankful for the prayers and I know that is how we are functioning so well at this point and will continue to function well into the road ahead. However things go, whatever happens, I know we have a family of believers that love us, support us, pray for us and will do just about anything for us.

thank you thank you! I have had such a confidence and peace today and I'm looking forward to a wonderful weekend with my sweet little family and lots of church family and friends. :) soaking up as much time with both, before things get crazy.

Before I close, please send prayers for my Mimi (judy woodall) tonight. She was moved back up to hopsice here in amarillo. She is really at a turning point. Please pray for Jesus to relieve her of pain, suffering due to labored breathing, lack of ability to swallow and things. She just wants to go home she told my mom the other day. Please lift her to Jesus and ask that her time of suffering be short and that her mansion and crown be readily awaiting her arrival. She is a precious woman to me and I hate to see her in such turmoil. thank you all.

love you each dearly.

Tuesday, July 17, 2012

Another one...

I've been posting a lot more often because I have been thinking, way more often. I just can't help but think constantly about how long we will be in ft worth, how will Noah do during/after even before surgery? What does his recovery look like? What kind of struggles will he have and what victories will he surpise us with daily? My mind is way too small to hold all these questions and I suppose one way I try to release my mind of them all is to write it down. Seems to help for a few days. Then I'll write more.

I read some more about the 3 surgeries Noah will have and how they have become quite routine and perfected in the last 20+ years, but they are still open heart surgeries and have such risks. I know my God is bigger than heart surgery. He has formed Noah, completely the way he wants him and will continue to form his heart before he's born, into a wonderfully working heart, or he will use surgeons to correct it. I trust that. I just get weary of knowing that my tiny little one will have to endure more in the first week of life than I have in 27 years. Yikes. God sure does have plans for him.

I try to be positive and be honest about all of this, yet there are just days when all I can say is....this sucks.

Guess prayers are needed today more than some. I just want him to be healthy and whole. I want my mind to stop replaying all the hows, what ifs and whens.

thanks all,

Sunday, July 15, 2012

Deep Cries Out to Deep

What a weekend! We had a wonderful family weekend, the three (four) of us! Friday night we had a "lovely" dinner at Taco Bell (a group favorite) with James, Katrina and the kiddos before going to the movie night at the church. They played "The Grace Card" and it was wonderful. Such a message! It was a fun night and Ava got to play hard with her friends in the nursery while we had a kid free couple of hours watching the movie. :) Great time! Saturday was wonderful as well! We three got up fairly early, thank you Ava, and began the day with a Donut Stop breakfast, followed by a trip to the farmer's market where we bought some fresh zucchini and a bouquet of flowers! So fun. :) (i miss flowers, since I don't work with them daily) We had a little down time before going to a Kairos meeting and then I ventured to church for practice and service after that. We had a nice evening together at home and it was nice. Today has been full as well. Church all morning for run through and two services (which were all awesome)! Lunch with the Pratt-Mullins/Baker crew and then with it being so cloudy today Ava went down for a great nap and Nick and I had some time to get things done around the house. Mom and Dad came over for dinner, which was great! Ava had a GREAT time with her mimi and tpaw! Lots of laughing and playing, snuggling and kisses! :) Such a full and great day. I have that "good tired" feeling and I love it.

So, to the real reason I need to write this evening. My mind is reallllllly full. It's overflowing with what ifs and whens. I am concerned with so many things right now and I know that I can't change or do anything about any of them, but it doesn't stop me from thinking about them. Here is my list of issues I'm going through in my mind. Maybe a few of you that read these will pray through them with me.
How long will I have to be in Ft. Worth before we deliver Noah?
How long will we be in ft. worth for Noah's recovery time?
What will Ava and I do while waiting in ft worth before noah comes? Will we sit around Kevin and Stacey's house for 2 or 3 weeks or will we be able to get around FW enough to enjoy some time doing things? Will I feel like doing anything anyway being that pregnant?
How will Ava and Nick do by themselves in Amarillo while Noah and I are in Ft. Worth for his recovery period? Will they eat ok and sleep ok and will Ava be taken care of those weeks I'm gone and he goes to work during the day? (things are in place for that, but as a mommy I still get nervous about it all)
Will Nick be able to get off work for a week or so when Noah's born? Will we have people in FW while noah is born that will be able to keep up with Ava? (mom, mom in law, etc.)
What does Noah's recovery time/journey look like?
When will his 2nd surgery be and what kind of recovery is that like? Will be in ft worth more in the next 6-8 months than we will be at home?

I could go on and on and on with questions and concerns, but I just drown in them and I know that I cannot keep going there in my mind if I am going to trust the Father.

We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ. 2 Corinthians 10:5

So, I take all these thoughts and release them to God in order for me to sleep tonight, function as a wife and mommy tomorrow and to live out my faith that I have publicly made known to others. I don't have a choice, but to live in an honest manner. A manner in which I live by faith, that doesn't mean I don't struggle, I'm not super woman, I still worry and feel and don't know how any of this will work out, but I don't mock God by going on and on about how bad things are, how worrisome I am and how I just don't know how things will work out. I feel as though I've done tooo much of that in my life and I have to stop. Mocking the Father by my living in a lack of faith and trust is, honestly, lazy. I just want to be honest and open with Him and allow him to be the merciful God he is and love me, teach me and guide me through it. I might have just rambled through that entire thought, but hopefully it came across to someone.

I am thankful that I have a place in a ministry that I get to do what I love and I've been gifted to do, but I also am ministered to at the same time. This week we introduced a new song and there is a bridge in it that truly made me dig deep and think.

"We're falling into deeper water, calling out to you.
We're walking into deeper water, going after you."

The first line seems so desperate and needy, but the second line shows a decision has been made to go deeper and to follow him. I feel that those two lines encompass so much of this journey I've been on so far. The day we found out about Noah's heart condition I broke into a million pieces, felt buried under a pile of bricks and knew I was just drowning in an ocean of doubt that I couldn't swim out of, but since calling out to him, I've made the choice to walk deeper, to think deeper, to be deeper with him as I go after Him, because I've never been closer to Christ than I am right now, in the middle of this deep water. Sometimes it's scary, but it's where I'm supposed to be. What is it in your life that you are drowning in that once you actually call out to the Lord, you stop there. You don't make the choice to move deeper in Him in order to go to a better place of depth and intimacy with him? It is our choice to go deeper. Are we ankle deep still? After all these years of "being saved", "following Christ", etc. Are will still just wading around in the kiddy pool or are we going deeper and deeper as we go after him? just a thought.

I have been pleased to know that there are a few people who actually read this blog and have been blessed by it in one way or the other. I'm thankful for the feedback. It helps me to know that this is not just a whining journal or a place for me to ramble into thin air. :) Thank you to those who read and keep up with us. Your love and prayers are felt.

There is another bridge to a song we did this weekend that I could share, but that's a whole new post. So, I'll refrain and wait until next time.

For now, a technical update;

I will be traveling to FW for the rescheduled appointment on Thursday the 26th and the appt is the 27th. I will return to Amarillo on the 28th. I am thankful for my sister, yet again, as she will be my travel buddy. I'm thankful for her sweet friend, who is offering her home for us to stay in the two nights I'm away. It will be good to hang out with Staci and just have some down time, before and after my appts, since she is moving so far away, very soon. :)
At the first appt, it is at 11:00am on Friday the 27th. It is an echocardiogram. We will meet Dr.Roten , the pediatric cardiologist and she will let us know what all we are looking at on the condition and hopefully answer some questions that I have. The second appt is with my new dr in FW (Dr. Howard) and it is for a regular OB appt at 1:00pm. We will discuss delivery dates I believe and probably get some info on when I will need to head to ft worth. I hope that I will return with more information for you all, as y'all have been so sweet to ask me so often how we are doing. Thank you thank you!

Prayers are always appreciated. I want to thank my former employer Glass Doctor of Amarillo. They have put together a raffle for tickets to a Ranger game, a 2 night hotel stay and a Visa Gift card. Tickets are 10 dollars a piece and they are sold at Glass Doctor and at the United on Gem Lake Rd. I say this, all because I am humbled beyond words at their generosity, their love they still show to my family and I, even after being gone from the company for over a year now. I am just beyond grateful for their support and love. PLEASE support this business. They are the best glass company in town and have the best Christian service you will find. Please please go visit them for anything from rock chips to full glass work in your home. I just have to plug them in here tonight because I am just soooo thankful for all they are doing to provide some funds for all of our travel, etc. Love you guys!

Ok ok, enough for tonight. I think my mind is finall cleared enough to begin to get sleepy. :)
thank you again for all the love and support. I could not make it through these crazy days without it.


Thursday, July 12, 2012

Big sister & little brother news

So, I've used this blog lately to let everyone know about Noah and all that is going on with the pregnancy and journey we're on with him, but I need to update you on the other happenings in our little life. Remember, we have a daughter too! haha!! Ava has been busy getting bigger and more grown up every day it seems. By the time she turned 1 she didn't have a pacifier anymore and she was off the bottle. Oh, and she was walking!!! Now it seems as though she is running more! haha. She keeps Noah and I busy chasing her around all day. :) Ava is tall, smart, silly, sweet and learning so much! She has a good array of words and likes to dance to music. Right now, she is learning to go to sleep in her bed. She's uesd to being rocked to sleep and then laid down, so now she is learning how to get to sleep without the rocking. bittersweet for sure. :) She brings joy and brightness to our life! I will miss her so much when we're apart for the time after Noah is born. :( She is a little ray of sunshine and I can't imagine life without her!!!
Please, when you pray for us, pray for Ava and all the transition she will have to go through in the next few months, as we will be seperated at times, she'll be in a different routine for a time, and then learning to adapt to a new baby as well. :)

We had a dr appt here in Amarillo yesterday and everything looks wonderful!!!! (minus what we already know about his heart) He is growing perfectly, he's the right size, he even smiled and was silly for us in the sonogram. :) sweet boy. I'm so thankful that everything else thus far, is great! My
blood pressure was perfect and I have no swelling. Thank you Lord for wonderful news and progress! I am so so thankful for every new day that things are still just fine. :) Here is Noah and his grin. LOVE him. Thank you for your prayers for him and all the support. We feel the prayers, even on the hard days of going through all the techinical paperwork stuff, etc. We're thankful for you all and love you all so much.
Photo: My smiley boy Noah!!
I'm looking forward to this weekend! Family, fellowship, free movie night at church, downtime with my nicholas and ava....can't get better. :) Blessings to all!

Monday, July 9, 2012

Mustard Seeds

So, today has been rough. Ava did not sleep much at all, therefore I did not sleep much at all. I have trouble sleeping now, at 28 weeks anyway, but dealing with a hot tempered 13 month old at 1am, 3am, and 5am for an hour at a time is more than uncomfortable. It is draining. I got myself out of bed this mornng and tried so hard to "start the day new", not be upset or too draggy, but in my efforts alone, I was cranky, short tempered, impatient, and frustrated. I know that as I began to seek the Lord through my frustration, God was faithful to send the right Word at the right times, as well as a quiet moment (before another storm of anti-sleep ava came about). It was a cleansing moment of tears and giving my anxieties to the Father. I have gotten to where I have a good "spill" that I can tell people that I don't exactly know but they know about our situation and want to ask and pray. I am thankful for the prayers, but I just don't let go of all my emotions in front of them. I have gotten good enough at it that I have fooled myself into thinking "I'm ok" a few times, when really I was as broken as ever. So, I think that is when God brings me to these days. I get back to that rock bottom place of "ok, Lord, I'm here again, what is it now?" He's gentle and every time I whine and question and cry out why, he just says, "because you're seeking me". I wonder why He chose us to walk this road. Sometimes I call it bearing this burden, but I correct myself quickly because He has been teaching and reminding me that this IS HIS PLAN. It is not a detour or a problem we are trying to fix. This whole road of having a baby we didn't plan on having so soon, him needing surgery immediately after birth, the road of recovery after that, the next surgery he will need and the recovery after that, the fact that all of this takes place 6 hours from home....etc. ALL of this is no surprise to Him. So, why do I keep questioning Him and this plan? Why do I keep coming back to this place of "why me". I don't think God minds. In fact, I think that he keeps reminding me of his plan and goodness, even in my weak moments. As I cling with all my might, to the tiniest mustard seed of faith in my hand, I just have to learn to take each of these bad days for what they are. A means to know Him more, love Him more and experience His character to its fullness. For when I am the one that is  humbled and not thinking I am doing it all perfectly, He has much more room to work in me and calm me.

I am thankful for family, for friends and for the body of Christ who support me by praying. They are felt more than they know. Somehow, all things are working for HIS good and HIS purpose and when God has me lead his people in worship to the song "He is Faithful", I have to live that I believe those words.


If I claim to believe that and lead God's people into proclaiming that to Him, than I have to live that, believe that in my core and hold fast to those words and not just pretend to be ok, but to truly live in the peace that comes with planting that mustard seed in my heart and letting it take root in it's deepest place.

my dr appointments have been rescheduled to July 27th at 10:30am-for the echocardiogram and 1:00pm for the appt with my new dr. My sweet sister is accompaning me for this and I'm thankful.
I have a doctor appt here in Amarillo, Wednesday at Dr. Chandler's for a regular appt and a sonogram as well to check Noah's growth. Please be in prayer with us as we ask the Lord for amazing healing in his heart and praise the Lord regardless, because He is good and He is forming Noah how he pleases.
Thank you family, friends and church family.
we love you.


Thursday, July 5, 2012

For I Know the Plans I Have For You

Today would have been our appt day in Ft. Worth, but I got a call on Tuesday afternoon around 3:00 from Cook's Childrens Hospital informing me that some things in the insurance trail hadn't been approved yet and they were cancelling the echo until they got it all figured out. Therefore, I talked to my dr and they cancelled that appt so I could make it all in one day in one trip. I was able to cancel the hotel in time to get refunded! Praise the Lord. :) So, after struggling Tuesday morning with leaving my baby and not being able to be with the family on the 4th of July, God allowed me to do just that. I was thankful for that change in plans. I didn't want to reschedule the whole trip, but I know that there is a reason that God wanted me home this week. I have decided to soak up time with my baby and REST. Jeremiah 29:11, one of the most overly used verses of all time, still speaks to me....I think we look at that verse with our "life plans" in context. That, God has planned our life out, which he does, but sometimes I think we need to remember that God has today planned out, first. He has today covered and that is enough. So, as I was relieved and frustrated all at the same time Tuesday, He knew my heart's desires, he also knows that whenever the next trip will be, will be better than if it were today. I was able to be with my family, enjoy Nick's family's annual cook-out and now get some time at home today to kick back and just chill out. I had done lots of chores and things thinking I was leaving, so I am able to really just rest, play with Ava, we'll go see my mimi later today, and then spend some time with out of town family that is  here this weekend, this evening.

So, I mention seeing my Mimi today....she is hanging in there, but needs prayers for peace and even mercy from the Lord during this time in her life. She has been moved back to Canyon Healthcare, under hospice care, but she is not as close to "the end" as we might have thought. She is under the title of "failure to thrive", so she can't really get better at this point, but she is not declining, even off of medication she has needed her whole life. We are confused by this and just have to trust that Jesus knows what he is doing with her. She doesn't remember having back surgery or why she cannot walk at this point  though and so she gets distraught at why she can't just get up and walk, get up and go eat somewhere, go to the fireworks last night, etc etc. It was very difficult on my mom yesterday trying to explain to her, but not get to detailed or crush her spirit, etc. It is all wearing my pops and mom out and they are holding on to just taking it a moment at a time.

On a lighter note all together, Ava is as silly as ever and is starting to make even more words and noises lately. She says, "buh boh" and has the silliest goofy laugh (sounds like her dad). She walks like crazy, loves milk, enjoys having her cousin jada over everyday this summer, has lots of friends at church and loves her nursery teachers. She could eat bananas all day long and loves nutrigrain bars of all flavors. She dances to all music it seems! :) She is getting good about going down for her naps at regular times. She sleeps through the night and loves baths. Ava is just one big ball of activity and joy and we love her so much. She makes me strive to be better, stay focused, trust the Lord and want to make her home a place where she can thrive and learn and grow. Nick goes beyond the call of duty as a daddy and loves Ava beyond words. I'm blessed to have a hubby who is an inredible daddy. :)

so, for now we wait to hear back from ft worth and we'll go from there. When I have an update I will let our prayer warriors know. :) Noah isn't as active today, so maybe he is resting too, but I sure do love when he kicks me all day.... maybe he'll wake up and let me know he's still a goober. :)

blessings and thanks,