Thoughts from our children.....

Since we found out about Josiah, about 20 weeks ago now, we have tried to be as honest with the kids as possible.  We were advised to be simple, and real with the kids.  

Luke ( age 4 ) talks about Josiah as his brother, and he even included him in a picture that he drew of his family for a pre-school project.  However, I don't think that he comprehends much of what is happening.    He will kiss my tummy and say good morning to his brother, but his level of understanding seems pretty simple.    The deepest thing that I have heard him say is that the good thing is that if Josiah lives, we will be happy, but if doesn’t he will be with Jesus.  

Ashley on the other hand,  ( age 6 ) has been asking questions and processing for months now.    The sweetest thing to me is her prayers.  She prays that God will help him to grow up to be at least a big kid, like at least 10 years old.  We told her that he has a “boo-boo” on his lip and that his heart has a small hole in it.  She also knows that one of his eyes may not work well.   I love the way that 6 year olds think... she said that she is not worried at all about his lip, because she saw on t.v. where doctors can do surgery on this.   I think she saw a commercial about the missionaries that donate their time/skills to fix cleft lips overseas. 

She has said several times that she feels sad about Josiah.  She told me the other day that she felt like she wanted to cry.  She also said that she wished that Josiah was a twin, because if he doesn’t live, she would at least have new little brother.  She really wants to have a new baby, she is definitely the nurturing type.    The good news about her sadness is that it doesn’t seem to last for days on end, she will say things like this, and then a few hours later be super silly and laughing hysterically.  This is refreshing to me, my kids laughter is so refreshing.  

In an effort to prepare her for what may happen,  I told her that the sad news is that he may not be alive when he is born, and that he may not be able to come home from the hospital.  She thought for a few minutes and said, I know mommy.  But, she insisted, that even if he doesn’t make it, she wants to hold him.   We will do our best to make this happen for our sweet little girl.   I plan to try to take her to pick out some things for her new brother that she can give him.  Ashley has the gift of giving.  She loves to share her things!  I am so proud of the way that she gives to others and thinks of others needs.  She will often pick out one of her toys to give friends that come to visit her.  We gave her $15 dollars the other day at the pool store to pick out some new toys.  She was in such deep thought about what to get, and when I questioned her about it, she said that she was hoping to find two things that she could buy, because she wanted to give one thing to her cousins and one thing for herself.  She decided on a pack of diving sticks and wrote names of her cousins on each stick to give them.... I love this about her.  

She also came downstairs the other morning with her pink, satin blankie all wrapped up and said that she wanted me to get Josiah’s box down so that she could put the blanket in it.  We have a special box for Josiah, and are keeping keepsakes in it.  She wanted to give him her special blankie!  She is really a tender heart.  

In an effort to stay positive, I wrote down all the blessings that this pregnancy brought to our family.  One of the greatest, is a new appreciation of the three healthy and beautiful kids that we have.  Now, I am not saying that there are “those days”, but overall.... I just have to say that I am amazed by their uniqueness and so appreciative of these three little gifts.  Just as I am thankful for the unique gift of baby Josiah...as I write this, I am 36 weeks along.  Just a little more time before we meet!  One of our biggest hopes is that we will be able to meet him while he is living.  There are so many concerns about him not making it through birth, so please keep this in mind as you pray for our family.  We all hope for that opportunity.  

consult with neonatologist

On the last post, I mentioned a meeting that we were scheduled to have with the neonatologist.  I want to update you on that meeting. 

 First of all, I want to say how appreciative we are of the Perinatal Loss Office at NorthSide Hospital.   The Loss office has coordinated so many of our meetings and doctors appointments for us.   They are the ones who arranged the meeting for us, to discuss the results of the MRI that I had several weeks ago.  The loss office also has put a birthing plan into place, and has circulated it to those who may need it in the hospital.  Their goal is to make this process as “easy” as possible.  They have been a huge support to our family, and I am glad that the hospital has invested in this service for their patients.  Hopefully none of those reading this will ever need their services, but we are truly thankful for their help.

The doctor that Chad and I met with was extremely helpful and kind, although, it wasn’t all good news.  One thing that I have learned through this process, is that care and concern can be heard in the WAY that things are said.  Even if the news is the same, having someone communicate with empathy is so much easier to accept than one who communicates with only facts.  Does this make any sense?  This neonatologist seemed to know a lot AND care a lot.  Another thing that I like about him, was that he was humble.  I really do not like the arrogance of those who want to predict the future.  Only God knows what the future holds, and all things are possible with Him.  This doctor was careful to give us the facts, and all of the statistics, but steered clear of predicting the future.  He said that every case is unique, and we are uncertain of what will happen with Josiah.  I really appreciated this....

The big take away from the meeting, was that although the anatomy of Josiah’s brain looks much better than expected, the MRI is not designed to detect the neural activity and functioning of the brain.  He said that if Josiah is a full Trisomy 13, even if the brain anatomy looks normal, it may not function as it should to allow him to have a long life.  

The main cause of death, from my understanding is apnea.  The child simply stops breathing, because the brain doesn’t tell the lungs to breath.  This could happen at within hours of his birth, or it could be days, weeks, or months.  We just don’t know how long he will be with us.  

Obviously, this is an overwhelming thought.  I am wondering how I will ever stop looking at him, wondering if this breath will be his last.  He said that sometimes the child is sent home with a monitor, that will alert parents of this type of episode.    I really can’s spend too much time thinking about this, because it is just too much.  

This Friday the 21st, I am scheduled for the amnio.  The quick results will be back within 2 days, if it is unclear, the extended results will take 2-3 weeks to be returned.  So for now, we focus on keeping our minds in the present, and trusting God for today.  

34 weeks/MRI testing

34 weeks

A couple of weeks ago, I had a fetal MRI.  I wasn’t too concerned about the test, because I didn’t consider myself “claustrophobic”.    The testing would take about an hour, after an hour of the registration process at Children’s Healthcare at Emory.    Because I was so confident in my ability to complete this test without moral support, I asked Chad to meet me afterward for the consultation with the radiologist.   

They covered me in warm blankets and put earplugs in my ears.  They then asked me to remain completely still for the duration of the test, which would be around 45 minutes to an hour.  They gave me a panic button, and then put me into the large, dark, tube.  I made the mistake of keeping my eyes open the first time, and I had a mild panic attack!  It is really felt like I was trapped inside this small space, and the loud noises were really frightening.  I didn’t last 30 seconds before I pushed the button.  

They removed all the warm blankets, put a cold rag on my head and then we tried it again.  This time, I closed my eyes before I went in and left them closed the entire time.  I prayed a lot!  I also had to talk to myself the entire time to remain calm and still.  It was a real growing experience!  I told myself that I was doing this for Josiah, and the results would be worth it in the end.  

I hope that I never need another one of these tests!  If so, perhaps an open option would be better.... or at least a sedative! 

Chad and I were really surprised to hear some of the results that the radiologist gave us.  We were told initially that he had a Dandy Walker Sign, which is a problem in the back of the brain that effects his cerebellum.  According to the MRI, he actually does not have this problem.  This was good news!  Also, we were told that he had an underdeveloped jaw, but according to the MRI there was no evidence of this.  This news was very encouraging to us.  

The bad news was that he has one eye that is very small, and is past the time period of development to grow.  The doctor did not feel like this eye would be functional.  Also, he confirmed a large cleft lip and palate.  

We have a visit with the neonatologist , who is also a geneticist, in a couple of days to help us discern what all of this new information means for Josiah.  According to our perinatal specialists,  if Josiah is a “full” Trisomy 13, his prognosis remains poor, despite the good results of the MRI.  The Harmony Test that I took early in my pregnancy can not discern if the Trisomy is partial, mosaic, or complete.  If he is partial or mosaic, his chances of survival are much greater.  

I have been hesitant to complete the amniocentesis  test for many reasons, but we have  decided to schedule it soon.  I am not a big fan of any needles, especially really long needles!  Please pray for my peace that day, and for Chad for the following 2 days.  I am supposed to take it easy, and not do any lifting afterward.  This will mean that Chad will carry the weight around here, there is a lot of physical activity in this household, especially with our 21 month old.  The full results will take about 2 weeks to be returned.    The purpose of the results, will help us decide what type of care to provide for Josiah after birth.  

Every time I go, I am always reminded of the chance of “fetal demise”, or preterm labor, and all of the other things that can go wrong.  We know this, but we are trying to just make the best decisions that we can make along the way.  It is very sad.... I feel very sad as I write this post.  It is a heavy season for us, but we are constantly encouraged by the support that you all have provided.  Thank you again for your encouragement and all of the things that you do..... it does not go without notice!  It is times like these that we are reminded of the highest quality of people are around us.  We have such sacrificial support, and we are SO grateful.  

31 weeks

31 weeks

Well, it has been a while since I posted anything.  I sit down to write, and I just haven’t had a clear idea of what I should say.   Chad and I would like to thank you all for checking on us.  It is really nice to hear from you and to know that you care!  

There are really too many things to mention each one, but just know that we appreciate you and that we are so thankful to have such wonderful friends and family.  

Josiah is growing, moving, and kicking.  We were told at the last US that he weighs 4 pounds.  I am feeling very large, heavy, and tired, but at the same time I feel blessed that I have the privilege of carrying this precious boy.  

About a month ago, we had an appt. with the specialist that was pretty upsetting to me.  the doctor wasn’t sure that Josiah was developing eyes or eyelids.  It took me several weeks for this news to settle.  It is not that I love him any more or less with eyes or without, but I would love to be able to connect with him through looking into his eyes.  We went to the specialist again last week, and a we are happy to report that he definitely has at least one fully developed eye, and that he was actually moving it during the US session!  I know that this is a small thing, but it felt like a huge blessing from God.  It was a very special moment for me.  I am learning to celebrate the little things, that mean so much. 

I am officially 40 weeks on July 17th.  As the weeks progress, I have such mixed emotions about this date approaching.  In past pregnancies, I couldn’t wait to get the baby out of my belly and into my arms!  Josiah is different.  I know that my body is helping him stay alive, and the fact that his birth will be difficult for him and that he will not be as safe out of my body, it brings a whole new dimension to this.  

I am trying to enjoy every kick, to embrace every movement that I experience, as it is my special time to “snuggle” with him.  All of our kids love to snuggle, and this is my time with Josiah.  I am honored to have all of this time with him, and I am trying not to miss it.  

Emotionally, I would say that there is a steady peace that passes all understanding that is the foundation of our day to day.  I feel incredible waves of sadness, unlike any other that I have ever experienced; however, we continue to have hope.  The moments of tears are coming more frequently, and the thought of what may happen after he is born, can at times feel like more than I can handle.  It is in those moments that I have to back myself up and stay “in the now”.  Just as God has graciously carried us to this point, we have faith that He will provide us the shelter that we need in the future.  

I have began to read a lot of blogs from other parents that has experienced infant loss.  Wow, what incredibly STRONG women!  It is a “club” that I do not hope to join, but I am really amazed at the depth of character that is developed through fierce adversity.  I am trying to remind myself that Josiah is God’s baby.  He is letting me carry him, to love him, and to cherish him for a time.  I don’t know how long I will have with him, but how many of us do know for sure how long we have with any of our children or loved ones?  This life is so uncertain.  In the depth of my sadness, I remember that God understands our pain.  He actually experienced the death of his son, Jesus.  He is acquainted with our grief.  I feel surrounded by His love.  

Chad and I were incredibly blessed this morning to have the Elders of our church pray over us.  We were surrounded, anointed with oil, and prayed over.  It was such a beautiful memory, and we will cherish it.  As one of my dear friends had her hand on my belly during the prayer , Josiah was moving and kicking!  He was an active part of the prayer time!  We go to a very large church, but to be cared for in this way was really special.  Even in a “mega-church”, the love of Christ was so real and personal.  We are grateful for North Point Community Church and the leadership there, what an amazing body of believers.  

I will try to post more often... please pray that God will give us wisdom in the coming weeks as we plan for His arrival.  There are so many decisions to be made, and we want to choose wisely.  

Thanks for walking with us!

What am I learning?

What am I learning?  How is my faith being stretched?  

I am not one of those people who boldly ask God to, “ Break me”.... or “shape me, even if it hurts”. I am fully aware that God is capable of doing anything that He wants or desires for the best.  I am just not a person who seeks suffering.  

I would rather spend time with friends, go on vacations, have happy family gatherings, and all of those pleasant things in life.  Why would I want to look for trouble, or ask for trouble?  I like things to be smooth and easy sailing.  

When I first realized the diagnosis of Josiah, a dear friend and mentor said that even this news, is for my good.  How could this be?  How could God allow so many of the pregnant people around me to have healthy babies that they will grow up and grow old and will likely die, far after their parents.  The Bible says, that “all things work together for the good of those who trust God and are called according to his purposes”. ( Rom 8:28 ) All things.... even disease, sickenss, and in this congenital deformities?  

I am no scholar.  Most of my historical testimony is based on my experience with God.  Who God has been to me, and how I have experienced God.  Throughout college, I added to this faith with some study of apologetics and evidence that supported my beliefs, but at the core of my faith is the personal relationship that I have with Christ.  The sense of His presence as I pray, and recognizing his providential arrangements of my life circumstances.  

The first few weeks after the news from the doctors about our baby, I was very numb.  I still am, to some extent.  We were not planning on Number 4, in fact, we were actively planning against it.  :)  When we spoke with the geneticist, he said that it is very possible that this particular egg or sperm had an extra set of the chromosome #13 since we were babies in our mother’s belly.  The chances of this baby forming in this way, is very unlikely.  The odd’s are 1 in 10,000... some say 1 in 15,000.  So I am left with some great questions, that will likely never be answered on this side of eternity.  

I know that grief is a process, and maybe I am not at the “anger” stage yet.  I hope that I don’t go through that, because I am experiencing great peace in knowing that for some reasons that are beyond me, this is in fact providential.  I am settling in on some ideas:

all life is precious, even life that is considered “deformed” or “abnormal”.

who decides what is beautiful?  

the easy road, is not always the best road.

“In this life, you will have trouble”.... we were never promised a life of ease and comfort.  

Even life that is brief, can have great significance and meaning.

These are just a few of the ideas that have been swimming around in my head.  It has been a challenging few weeks.  The mornings are generally filled with lots of activity and a reasonable amount of hope.  When fatigue settles in the evenings, the sadness catches up with me.  Most nights, there are tears.  As my stomach grows and I feel his little feet kicking me stomach and stretching out, as he is safe in the womb for now.... the attachment grows.  This is our child and we love him!  

If often feels like the world is continuing around me at the same pace, but I just can not keep up.   I am at peace with this, in knowing that for a season my life will different.  Our family will be different.  Different is not necessarily bad, it is just something that we have been called to walk through.  We are trying to do it with as much grace as possible, knowing that no person really knows what the future holds, and we are no different.  

Since Ashley was born 6 years ago, I have been very possessive with my children.  What I mean by this, is that I felt like God made them, and now they are ours.  I remember reading a blog of a family that went through a similar situation about a year ago.   The story was my WORST fear.... having a child sick, and then the child dying.  I had never met this couple, but remember saying to God, “please never take one of my children”.  Even my prayer was possessive!  The truth is, that we have been entrusted with them, but they are really not “ours”.  They are gifts that we care for for, but they were created by God and they belong to God.  

I would say that we are very sad, but not without Hope.  Hope that God is strong and powerful enough to heal Josiah if He chooses.  He is also strong and powerful enough to hold us in our grief, if his life is brief.  No matter what the outcome,  we will never be the same..........

DISNEY

DISNEY !

You may ask, why would I want to take the kids to Disney World, with all that we have on our plates now.  I asked myself that question a few times while we were there.  Disney is fun, but exhausting!  

We went for 2 days to the Magic Kingdom, and traveled for 2 days.  My friend Amy  was kind enough to go with me and help me with Ashley & Luke, and Jacob stayed home with Chad.  Since we don’t know how much time Chad will take of when Joey is born, we decided it wouldn’t be wise for him to go on this trip.  Both Nana’s helped Chad during the day,  while he was working and they took good care of Jacob.  I am a little sad to say that it not appear that Jacob missed me very much!  This was the longest that I have been away from him.  I guess he is a big boy now at 18 months!

We went for two reasons... the first was to celebrate our Ashley Naomi.  She turned 6 on March 8th.  I didn’t feel up to doing a big party this year, and I know that she has been wanting to go to Disney for a while.  

The second reason is that I wanted Josiah to go.  I know this may sound strange, but he is alive and with me now, and we don’t know for how long.  I want to give him as many experiences as possible.  I hope you enjoy the pictures!  

23 Weeks , Cardiologist Appt.

We had a visit with a pediatric cardiologist this week.  They used the ultrasound to look at Josiah’s precious little heart.  I am attaching a little video that they allowed me to capture.  The doctor was very kind and took a lot of time to go over the results with us.  He said that the four chambers of his heart have formed and that it appears that the major vessels are in place and functioning.  He did diagnose a VSD, which is an abbreviation for a ventricular septal defect.  Josiah has a moderate sized hole between the lower two chambers of his heart.  From our understanding, it is not something that will be immediately life threatening.  Sometimes the hole can close in the weeks after birth.  In children with a different diagnosis, the hole can be surgically repaired.  There is some question if a surgeon would complete the surgery on a child with Trisomy 13 because of the complexity of other medical conditions.  

As with other visits, we have to face the fact that so many things will not be known ahead of time.  We have the reality that we just don’t know how severe his health will be until he is born.   Our plan is to make him as comfortable as possible and to love him as much as possible!  We will celebrate the time that we have with him, no matter how long it will last.  

We are well aware of the statistics surrounding Trisomy 13, but we also know that anything is possible.  We are in a strange place.... trying to not live in denial, but also preserving hope.  

Once again, Chad and I want to thank you all for your care, concern and support.  We really feel it!  We will keep you all posted as we know more.  

I am attaching a devotion that I read today from Proverb 31 Ministries.  Because of all of the unknowns, we are forced to discipline our minds to think about the things that are true, and have our Hope in God.  I hope you find it as encouraging as I did.  :)

Daily Devotion for March 14, 2013

The Cussing Thoughts

By Lysa TerKeurst

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"Let us hold unswervingly to the hope we profess, for He who promised is faithful." Hebrews 10:23 (NIV)

The sky was blue. The snow crisp white. The mountain slopes full of choices to be made. Which run will we take?

We decided to tackle a "blue run" first.

The ski officials label the slopes by color. The same officials whose job it is to inform skiers exactly what they're about to get into. Yes, those of us crazy enough to strap glorified popsicle sticks to our feet and careen down a mountain need to be informed.

Green for beginners. Blue for intermediates. Black for advanced and those who think they're advanced until they get too far to turn back. Bummer.

We decided we would be smart. We wouldn't overestimate our skiing abilities by tackling the black runs. But blue? Yes, please.

The perfect skiing adventure.

Until.

The moguls.

We'd been on several lovely runs down the same slope when my husband Art suggested we try a different slope. Huh? I am emotionally allergic to different. I like to discover something that's good and stick with it. Why mess with what's working? With what feels good?

"It will be great," he insisted and headed over to the new lift.

Either I was going to follow him or be left behind. That's when I had my first not-so-nice thought. I call them cussing thoughts. It's not that I was actually saying cuss words. No, more like really negative thoughts that I wouldn't want to broadcast out loud.

So, a new slope it would be.

Things started out well. And then the slope got a little interesting. Have you ever heard, "Everything was going fine until we hit a bump in the road"? Yes, well, try a steep mountain full of nothing but bumps. Like the kind that could catapult you off the side of the mountain. Or snap your legs in half.

As fear coursed through every fiber of my body, my mind filled with all things negative and derogatory. Things that were not going to make that trip down the slope an easy one.

What I really needed was to resist the cussing thoughts so I could choose the corrected thoughts. Because dark thoughts are like a black run down the mountain. Once you get on the black slope of cussing thoughts they'll take you down to places you don't want to go.

But in that moment, I didn't choose the corrected thoughts. I made that run so much more difficult by letting the cussing thoughts come in and bring me down.

How like life.

Every day we're going to hit bumpy spots.

Someone will do something that rubs you wrong. Cussing thoughts or corrected thoughts?

You don't get that opportunity you felt you deserved. Cussing thoughts or corrected thoughts?

A cussing thought can become a corrected thought by asking three questions:

* Is this thought in line with truth?

* Is this thought in line with who I am?

* Is this thought in line with who I want to be?

God has taught me how to think using His truth but I have to make the choice to apply what I've learned.

God has challenged me to live out Hebrews 10:23, "Let us hold unswervingly to the hope we profess, for He who promised is faithful."

"Hold unswervingly. Hold. Unswervingly." What does this mean?

God has challenged me to grow in my knowledge of Him but I have to choose whether or not to display this growth through my thoughts and actions.

Think according to truth. Live according to truth. Then His hope will be displayed in my life.

Just like mountain slopes have options for which run to take... so do I with the thoughts I think. Cussing thoughts or corrected thoughts. My choice.

Dear Lord, I am so grateful for Your truth. Give me strength today as I hit some bumpy spots. Make my thoughts pure and in alignment with Your Word. In Jesus' Name, Amen.

Related Resources:
Do You Know Him?

If you missed Lysa TerKeurst's webcast on how to combat negative inside chatter, click here to watch the replay!

Feel like your thoughts are making you want to come unglued? In her New York Times best-selling book, Lysa teaches how to take control of your feelings in order to have godly reactions. Click here to purchase your copy of Unglued.

When you purchase resources through Proverbs 31 Ministries, you touch eternity because your purchase supports the many areas of hope-giving ministry we provide at no cost. We wish we could, but we simply can't compete with prices offered by huge online warehouses. Therefore, we are extremely grateful for each and every purchase you make with us. Thank you!

Reflect and Respond:
What cussing thoughts are you having today?

Write down one you're struggling with. Then, write down a corrected, truth-based thought to replace it with.

Power Verses:
Philippians 4:8, "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." (NIV)