Life is not measured by the number of breaths we take, but by the moments that take our breath away.

Thursday, June 30, 2011

Through a child......

Several weeks ago, Anastacia came in one morning and said "mom, when I have a baby brother I want to name him Isaac." I asked her what she wanted to name the baby if we had a girl, the response, "I don't know." This from the little girl who had insisted for months that someday when we had a baby she was having a baby sister. We would explain that God may send us a boy. Her response...."He wouldn't do that we have enough boys in our life." (Have to love children and their honesty:) At this point I was maybe 13-14 weeks along and we had just told her she was going to be a big sister. I remember that morning Amos and I talking about we really liked the name Isaac, but we still had several weeks before we had to think seriously about a name. Later it occurred to me that that was my nephew's middle name as well, and we should probably look at other idea's and talk to my sister about it too.

A couple of week's passed and her teacher stopped me one day after school and asked me if we were having a boy, she thought it seemed kind of early to already know the gender. I told her we didn't know, she smiled and told me that Anastacia had been telling all of her friends she was having a baby brother and his name was Isaac. Kids are so funny.....little did I know how much God works through them.

Right at the beginning of this journey of the test's/specialist's/doctor's, somehow finding the gender out got lost in the shuffle of all the other craziness. I remember thinking it would be nice to know, but it somehow also seemed so trivial when they were spending 2 hours alone looking at our baby's heart. Until one ultrasound tech said "well, he is enjoying displaying himself this morning, did you know you were having a boy?" Later that day we told Anastacia she was having a brother. She said "and his name is Isaac, right mom?" I quickly said we needed to talk about it, remember that is Erik's middle name too. I had mentioned the name to my sister and she was so sweet about it I knew it wasn't an issue with them, but still we wanted to talk about other names. Anastacia looked at me so indignantly and said "no mom, his name is Isaac, just like the story you read me in the bible, that is going to be his name, not anything else." We read nightly from her bible and I knew I had read her the story of Abraham and Isaac,but I hadn't thought much about it at the time in terms of connecting it with our baby. I texted Amos and told him Anastacia really wouldn't let go of the idea of naming him Isaac, maybe we needed to talk about it some more. I went back myself and read the story from her bible, it is the story of Genesis 22........

The story spoke to me, to the point of giving me chills, here is a small part from Anastacia's bible......

"STOP!" God said. "Don't hurt the boy. I want him to live and not die. I know now that you love me because you would have given me your only son." Abraham felt his heart leap with joy. He unbound Isaac and folded him in his arms. Great sobs shook the old man's whole body. Scalding tears filled his eyes. And for a long time, they stayed there like that, in each other's arms, the boy and his dad. Suddenly, Abraham saw a ram caught in some brambles-the sacrifice. God had given them what they needed just in time. The ram would die so Isaac didn't have to. And so Abraham sacrificed the ram, instead of his son.

And as they sat there on the mountaintop, watching the embers of the fire die in the cool night air, the stars above them sparkling in the velvet sky, God helped Abraham and Isaac understand something. God wanted his people to live, not die. God wanted to rescue his people, not punish them. But they must trust Him.

I think we all struggle with the idea of God asking us to trust in His love enough to obey the test of sacrificing our own child for Him. Honestly, I remember reading this story before and not even relating to Abraham, thinking God you are nuts if you think I would tie my child to an altar, even if it is a test of my love for you. But when I have a hard time comprehending even the idea of obeying God with this request I remember that is exactly what He did for us with His son. That is how much He loves us. He loves me, loves all of us, more that I can ever imagine loving our baby Isaac. So once again we have to have the courage to trust.....

"Trust in the Lord with ALL your heart; do not depend on your own understanding" Proverbs 3: 5

Since reading the story of Abraham and Isaac over again, I often wonder if Abraham's prayer as he walked up that mountain to sacrifice his only son, was at all similar to mine. The prayer for God to give me the courage to trust Him, and to continue to not be afraid to ask for a miracle, to heal our sweet Isaac, but at the same time to have the strength to accept God's will. Even if His will is to not say "stop". And working through Anastacia to help us name our baby boy is His gentle reminder to trust Him, even when we don't always understand our journey up the mountain.

Tuesday, June 28, 2011

The little "big" things....

We love our doctor. I mean love her! I was telling a friend all she has done for us and haphazardly made the comment "I know it isn't a big deal," and she said "no that is huge".
So maybe it is.
"The Lord directs the steps of the godly. He delights in every detail of their lives." Psalm 37:23. He continues to direct each and every step we take down to what may seem to many just the small details. It only becomes more evident to me further we go on this journey. I have read this Psalm many times before, but never seen it more than the last few weeks. He continues to arrange so many details from doctors and technician's with amazing compassion, dear friends and family praying constantly for us, and wisdom and guidance with Anastacia.
Our ultrasound went really well, considering. I was nervous going in, but had peace through the whole appointment. Have I said before how amazing Amos is? The peace and strength God continues to carry him with....... At one point he said to me, "If we have a hour, day, 100 days, or the miracle of a lifetime, whatever God gives us is a blessing."
Nothing has changed in terms of what the doctors are seeing with our sweet little boy. It is amazing when I look at him, he seems so normal to me. I can't tell anything is even wrong. I pray for God to help us to trust in Him, there are so many times I am afraid my own tiny seed of faith will be insufficient for the journey we are on. I know when I look all around me and see all that He has created and given purpose to, that surely I can trust Him to give purpose to our lives, to our little boy's life-the hard part is the "trust" and not needing to know "why".

Monday, June 20, 2011

Just breathe....

I am learning when God carries us, He allows us to catch our breath, to rest with Him. One word that comes to mind that carried us through those first crazy days is "breathe". Our pastor texted us that exact word several times, and I learned when I did breathe and focused on God, I found peace. Amos and I have often said that the strength we both have felt that last few weeks just doesn't make sense. Believe me, we both still have our moments, me probably more than my amazing husband. However,
every. single. prayer. is being felt. So more than words could ever say, thank you. Thank you for your prayers, calls, meals, texts, cards, cleaning our house, mowing our yard, help with Anastacia, the list seems to go on and on. We read every note, email, card and feel amazing peace.

Amos and I just returned from a business trip in Atlanta. I am continually amazed to see how God continues to reveal His perfect timing for us. We are so blessed to be part of such an incredible company that God has had His hand on, and we have so many wonderful friends and mentors through. I was able to spend some time with a dear friend over the weekend. She has been an amazing mentor to me in so many ways over the years, spiritually, as a mother, a leader and wife. And she has been through more than her share of trials and challenges. The truth she spoke to me was exactly what I needed to hear at the right moment. This is tough, sucks, will change us forever, and will take time to heal from, but we will make it through it. So thank you for the reminder that we will make it, and to continue to lean on Him daily!

One quick request. We have a doctor appointment and ultrasound Wednesday afternoon. If you could please pray for peace that surpasses all understanding, strength, and the miracle of healing for our precious little boy we would appreciate it. We love you all!

Monday, June 13, 2011

Waiting....

"We aren't necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be." C.S. Lewis

The last few days have been a struggle. Honestly I have been okay most days
(probably in a fog, but can function), but for some reason this weekend was tough. Like getting out of bed tough. I was trying to put words to it when talking to a friend, the best I could come up with at the time was "stuck". I feel like I can't grieve because that would be giving up hope, and yet the reality of what the doctors have said still hangs over our heads. Logically I know I can grieve, that God hears and knows all of my thoughts, maybe to me grieving admits the reality we are facing? I am still trying to find that balance, the balance between grief and hope. I am sure there are people who think we are delusional in our faith. We simply have chosen to allow room for a miracle.

Over the weekend a friend sent me this as encouragement....


Oh, how it spoke to me. The first verse may become my mantra the next few months.......

"If faith can move the mountains
let the mountains move
We come with expectation
Waiting here for you"

Thank you so much for all of your prayers! We love you all and each prayer, note, kind word, meal, gesture means the world to us.



Wednesday, June 8, 2011

What is normal?

"If you are a human being, you are most likely going into, in, or coming out of crisis most of the time." -Og Mandino

Trust in the Lord with all you heart, soul and mind!

Jennette and I are in a good place. The numbness that settled over us this last weekend has pretty well worn off. For me personally, the fog lifted yesterday afternoon. It literally felt like 3 anvils were removed off me. I had one on each shoulder and one on my head and then every now and then somebody would hit the one on my head with a sledge hammer.

I want to say thank you for your love, support and PRAYERS! They mean the world to us and without you and our savior this would be utterly impossible!

Some of you have asked how you can help....

Please help us find normal again. This will never be a normal situation, but if we can find some resemblance of normal then you are not only helping us, but you are helping to heal us. Jennette and I long for close, personal companionship that is safe, positive and normal. That is how we are wired. Please don't think you have to say "something" or listen or anything. We just want to love and be loved.

We love you all....
Amos


Monday, June 6, 2011

The call...

I suppose it could be compared to the same feeling that you would have when the phone rings in the middle of the night with news of a hurt loved one......

Late Friday afternoon we received a phone call from our high risk Dr. in St. Louis, the minute I saw the number on caller id my heart flipped. Instinct told me it couldn't be great news, we weren't supposed to hear until Tuesday morning at the earliest. I answered and at the same time texted Amos from my cell phone to come home if he could, I was on the phone with the doctor. Bless his heart, in hind sight I am sure I scared him to death. He told me he drove about 100 on the way home. The doctor once again went over the severity of the heart defect and the significance of that alone. And then said he had preliminary results back and they "overwhelming pointed to Trisomy 18". This means our sweet baby boy has an extra 18th chromosome. Initially one thinks, what is one more gene, but unfortunately this one extra gene sets off a tornado of consequences. The doctor was very compassionate and said he would support whatever decision we made at this point. Decision, we had to make a decision? We both felt like we were just walking in a fog..... the decision he was eluding to was to continue with the pregnancy. I asked what do you see other women do at this point, and was told that 90% do not continue with the pregnancy since Trisomy 18 is considered a "fatal fetal anomaly."

We have told the doctors, all of them, over and over, no matter what is found, terminating the pregnancy was just not an option for us. But to really have to cross that path? I have thought often the last few days of our marriage vows-you remember that part of the vows "for better or worse, till death do us part", and how we have watched couples struggle with pain and work through the difficulties and stick with the marriage. You make a vow, but to really have to cross the path and that vow be tested? If I am gut wrenchingly honest, the thought did cross my mind, that " if there was some way to erase, start over, run, maybe we should think about it." And then I got so nauseous I wanted to throw up. This life, our baby, is a miracle, he is God's creation, he was given to us for a reason. I thought of a Psalm I have read often the last couple of weeks...

Psalm 139:13-16 "You made all the delicate inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous-how well I know it. You watched me as I was being formed in utter seclusion as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed."

How could I read that, have faith in God's word, and then think what, He just forgot about our baby? Didn't know or lay out all of our child's moments? As Amos said to me today- God will show us with time, the good to come from this. I laughed, my response was "He must have more confidence in us than I do." A sweet friend said to me, thank goodness God made you his parents. For some reason He gave us this responsibility. Not that I want it. I wouldn't wish the last few weeks on anyone. We prayed for so long to have another child, a sibling for Anastacia, all we ever wanted was a healthy child. But for some reason we are on this journey. The last thing I want anyone to think is that we haven't struggled with our faith or with walking this path. We by no means have it all figured out. Giving up control is a constant struggle for me, Amos is the one who always says "it is out of our hands, He is in control," and then he has complete peace with the decision. Amos asked me today to consider telling our story, if for no other reason maybe it could help someone else in the future. If you are ever faced with something of this magnitude, pray, pray and pray some more. Ask trusted friends and family to pray. And then take time and trust that He will lead and guide all of your steps and the path that you are walking. I hesitated writing and telling any of this, for a couple of reasons, one being I have a lot of moments I just want to stick my head in the sand and hide for the next several months. The other part of me that hesitated is because we want to protect our little family, we want the prayers to be purposeful, and intentional, we don't want worry or the pity. Each moment, each day we both feel a little stronger. We know both the strength and peace we have started to feel are only a result of so many praying for us.

Today we met with our OB in Tulsa, I can't begin to tell you how much peace I felt leaving her office. We couldn't be more blessed to have a more compassionate and loving doctor. She answered all of our questions, and took the time to reassure Amos of my safety over the next few months. I told her the statistics the Dr. in St. Louis gave us, and she seemed surprised and said she honestly hadn't even considered that as an option for us. Oh, the peace we felt at that point. She is going to personally arrange and take care of all our our visits and care from this point forward. I can't tell you the relief I felt of not having to go to another specialist. She is going to monitor the pregnancy and our baby with ultrasounds every 2 weeks and I was instructed if I am worried about the amount the baby is moving to just come, don't worry about calling, just come by and she will check for his heartbeat. His heartbeat today was amazingly strong, 155bpm and is bouncing around kicking as I write this! We aren't sure what to expect from here on, and just ask for prayers to continue to have peace and strength for this journey. Anastacia has been amazing, as I just told someone she is good for both of us, she has the ability to touch our souls it seems right now. We get lots of "lovin's and snuggles" and God continues to speak to us daily through her. Please pray for wisdom and guidance for us as parents. Pray that we don't over indulge or spoil her out of guilt. Pray for our marriage, that we would both communicate and also respect each other's differences in "coping", and above all that we hold tight to our love for each other. Most of all pray, pray, pray for healing for our sweet little boy.
We continue to focus on Mark 11:22-24 "Have faith in God. I tell you the truth, you can say to this mountain, 'May you be lifted up and thrown into the sea,' and it will happen. But you must really believe it will happen and have no doubt in your heart. I tell you, you can pray for anything, and if you believe that you've received it, it will be yours."
We aren't naive, and know what the doctors say but also know that this is a mountain, a big mountain at that and if faith were easy there would be no mountains! Thank you all so much for the calls, emails, texts, meals, support. As we have said before we couldn't get through this without our faith, family and friends. Love you all!

Saturday, June 4, 2011

Perspective.....

As I listened to a good friend fill me in on some of the challenges she has been facing with her own family, she ended with "it's nothing compared to what you are facing". The first words out of my mouth were, "it's all relative". I remind myself daily how incredibly blessed we are, and that "yes, this is beyond difficult", but our situation could be much, much worse. As we have poured over scripture the last few days, many times in a feeble attempt to gain understanding, I am led back to Isaiah 55: 8-9 "My thoughts are nothing like your thoughts," says the Lord. "And my ways are far beyond anything you could imagine." For just as the heavens are higher than the earth, so my ways are higher than your ways, and my thoughts higher than your thoughts.
He continues to give us both strength and peace.

Friday, June 3, 2011

Baby Update

We started this blog a couple of years ago with the intention of using it to keep a "journal" of sorts of our family, and also to keep our extended family updated with pictures. Amos thought this would be a good way to keep all of our friends and family updated on the progress and changes with our baby. I haven't been very good about updating it in the past, but am going to try to be better this time around:) First thank you so much for all the text's, call's and email's. If I haven't returned your call, it isn't because I don't want to, it is simply because I hit a point where I am mentally "toast" as Amos says. We love you all and can't begin to express our appreciation for all of the prayers. So please don't hesitate to contact us! And to whoever mowed our yard-you made my husband's day/week/month/year! I don't know how anyone would get through something like this without first their faith, and then the support and love of their friends and family! We truly don't mind updating all of you and need the prayers! Also, for those who have asked, at this point we aren't too worried about privacy so if someone asks you what is going on feel free to share. Hopefully this blog is an easy way for them to stay up to date. We would ask you to remember that Anastacia has not been told anything at all about any of this, and please if you are around us "keep it positive":)

A quick update to bring everyone up to speed. Last week at our "big" ultrasound, where they scan and measure all of the organs and body parts a cogential heart defect was detected. We weren't sure what this meant-how big, how small, was it fixable? Our high risk doctor referred us to a local pediatric cardiologist here in Tulsa. On Thursday we had a fetal echo cardiogram and met with her. We found out that what they believe they are seeing is a pretty significant heart defect. At some point I will update more on that. But the just of it was it was significant, there are surgical options but also could be a very long road. Immediately we went down the road with her (in as nice as way as possible), was Tulsa the best place for us to be. Logic told us that when looking at just the numbers, yes they may see these type of case's here, but how many? The conclusion we came to, was if things were even more complicated at birth they would end up sending us out of state. One of the options was St. Louis Children's hospital. We immediately focused in on it-the biggest reason being we are blessed to have a support system of friends and family in St. Louis after living there for several years. After some research as well we learned they were also one of the "top" pediatric cardiology hospitals in the nation. We read case after case that had positive outcomes. Late Thursday we contacted Children's and were immediately impressed. We were put in touch with a nurse coordinator who took our history, asked us to fax records and she would get back with us on Friday. Friday she called and had four appointments set up for us on that following Wednesday. Huge praise! So we were off to St. Louis for a few day's. We ended up taking Anastacia with us and used some extra time to escape for a few days as a family. We stayed with a dear friend who is like family to us, Anastacia calls her "my" mimi:) It was wonderful to have a break from the chaos and be able to focus and regroup as a family. To our friends/family in St. Louis-please don't be offended if we didn't contact you while we were there. We desperately needed time together with just the three of us to focus on our family. We were blessed to have some of our dearest family friends from Owasso in St. Louis visiting family who offered to help with Anastacia. Their daughter is one of Anastacia's best friends and also the only family she has spent the night with other than grandparents. So we met them early Wednesday and Anastacia spent the day and headed back home to Oklahoma with them. She was such a trooper. Even though we haven't told her anything about what is going on, we have had a few meltdowns that are completely not "her". So I know she can sense something is going on. But Wednesday morning, not one tear about leaving Momma and Daddy:) It has been so amazing to watch how God keeps arranging the smallest details for us, from appointments to help from friends.


We started our day with a very detailed and long ultrasound and then a consultation with Dr. Longman. Immediately again we were impressed. They had a high risk doctor who just read the ultrasounds all day. At this ultrasound a few other concerns were brought up outside of just the heart. The biggest being the baby is measuring small for his age. Oh, he is a He:) We had lots of questions but knew that next we were meeting with the maternal and fetal medicine doctor and would be able to get into more detail then.

The next appointment was with the maternal and fetal medicine doctor. First we met with Dr Harper a fellow on staff and she walked us through everything. Once again we kept hearing "baby is very small" and that this could be an indicator that something else is going on. It also could just be he is measuring small. Amos interrupted her at one point to say "thank you", because she was the first doctor to really slow down and take the time to fully explain all of our options and why we should consider certain things. After meeting with her we then met with the attending Dr. Shanks. He was very good also and we connected with him very well. He again went over all of questions. After meeting with Dr. Harper and Dr. Shanks we decided to have the amniocentesis done to rule out or rule in a chromosome or genetic defect. We had talked about getting the amnio done in the past, but it had always been presented in a way that there wasn't much advantage to us other than "knowing" and then "terminating" the pregnancy was brought up-that is just not an option for us. So having someone walk us through why it was important to have the knowledge of the chromosomes so we could plan after birth was huge. They were able to rearrange things to get us in right then for the amnio.

Our next appointment was to have a fetal echo cardiogram done. The technology was amazing. We were also impressed with the Dr. because he specialized in fetal echo's and had a very thorough knowledge of what we were looking at. The echo took a couple of hour's and then we met with Dr. Johnson one of the pediatric cardiologist's on staff at Children's and the same doctor who had been looking at and studying the echo as it was being done. He was able to get pretty detailed as to what they think is going on with the heart. IF it is just a cogential heart defect we would have surgical options starting immediately after birth. We would deliver in St. Louis and start the process there. There is also a chance things could improve some between now and birth. However it was made very clear if one of the chromosome or genetic defects comes into play this could change things drastically.

After a very exhausting day and some time to decompress we are basically at a crossroads. On Tuesday we will find out if any of the major gene deletions are present and if our baby has a missing 13, 18 or 21 chromosome. Which if any of them are missing then it would not be a good prognosis and we would have some very tough decisions to make about care of the baby after birth. If all are present and we are just looking at the heart defect, then it still will be a long road, but the prognosis is a lot higher. At this point Amos and I are trying each day to put it all in His hands. As my sweet husband says it is completely out of our control at this point. God has the ability to heal our baby any time and we have to trust He knows what is best. We are taking it day by day and focusing on our family. As I put it, trying to have some "normalcy" after the roller coaster ride we have been on. Please keep praying, we can feel your prayers every moment of every day and they have given us both such peace. We love you all!