Letter to Baby Josiah

I wanted to share a letter that a friend of ours wrote to Josiah, it is very special....... written a few weeks ago.....

Dear Josiah,

Today I was honored to stand among some grown -ups who love Jesus, your mom and dad and their kids, including you to pray.  I wanted to take a moment to write this short note of what is on my heart when I pray and think about you.  God is the source of all life.  All that He does is motivated by love.  All that He does, whether it makes much sense to us or not, will result in glorifying Him.  This is the highest and most noble purpose anything can have, so that is a great thing!

God has planted a seed of life in your Mommy again and that life is you, already named Josiah Caldwell.  Your named after a man who was named king of Judah when he was just a boy.  He did what was right in the eyes of God , his heart was responsive and humble before the Lord.  God used him and kept His promise that he be buried in peace.  

God is already using you.  You are already glorifying Him from the safety of your mom’s belly.  We’ve been told that God is making you different in ways that may cause your time with us to be short.  Today, we asked God to enable you to live with them like Ashley, Luke and Jacob.  Your mom and dad love you and want to see you grow up to be a man after God’s own heart.  So do we.  We know that God can do this.  He has done so many amazing things!

This time of not knowing what will happen to you is really hard for your family.  Bud God loves you so much , He is carrying them through this in His loving arms, just like your mom is carrying you right now.  He has them and you.  He will never let go for even a moment.  His love son’t even let Him sleep because He won’t stop carrying them and watching over them.  When they remember this, they have peace and rest, just like you do now, all safe and warm.  

Little 4 lb. seed, Josiah, I don’t know how it will look but I do know you will grow to be the exact expression of God’s love He designed you to be.  I love you and praise God for you!,  

In Christ,  

Amy 

Fluids were up!

Hi everyone,
Just wanted to send a quick note to let you know that my AFI levels were up from 6 cm to 10 on Tuesday, so this will give us some more time with Josiah before he is born.  If they dropped below a 5 cm, they would want him to deliver.

The quick results of the amnio did return, confirming the Trisomy 13.  The next profile will let us know if he is partial or mosaic Trisomy 13, which would be very good news.  We hopefully know next week.  I am 37 weeks on Thursday of this week, so hopefully I can make it to at least 39.   My specialist said that I should expect sooner than later, since my fluid levels are not great, just stable.

One very good thing about being pregnant has been that I have had very few headaches, but I have a really strong one today.

Thankful.....for so many things, but mostly today that I am not in the hospital yet!

Amnio

Thanks for all your thoughts and prayers on Friday.... we could definitely feel them.  The procedure was hard for me, frankly, because I am a wimp when it comes to needles!  It was a very strange sensation.  I think it is because as a mother, we have this overwhelming sense that we are to protect our babies.  Even though in my mind I knew that I was doing this FOR Josiah, there is a protectiveness when a large gage needle is moving toward his safe little cocoon.  You could feel the entry with lots of pressure, and then it sort of felt like a suction from within.   I felt very dizzy and sick, but the good news is that it really didn’t take very long.  

The difficult news, was that they were only able to get a very small amount of amniotic fluid.  It was also mixed with some of my blood, so they will not be able to do the quick results test, that I would have had on Monday.  They will send the fluid to the lab and try to grow  it, but it will likely take 10-14 days.  This is assuming that they will be able to get the results.  Also, because my blood is in the mix, it could be a little more challenging.  

The harder news was that my amniotic fluid is pretty low.  If I understood her correctly, it should be around 14, and mine is 6.  If it gets below 5, the specialist said that they would probably induce labor, because the baby is not getting what it needs from the fluid at that point.  I really don’t fully understand why it is low, and how quickly it can change.  She said to monitor his movement and drink lots of water.  She also said to rest for at least 2 days, with mostly staying on the couch.  Sitting still is very challenging for me, but Chad’s parent’s helped out with the kids this weekend and Chad has been running around and trying to get ready for things if he comes sooner than later.  

I am now thinking that my hope is that I can at least make it through this week.  I will be 37 weeks on Thursday, and babies that can make it to 38 wks or longer statistically do much better, although he is pretty mature at this point.  Since we don’t have all of the information that we had hoped to have before delivery, we will try to do the best we can with what we have.  We need wisdom..... in the best way to care for Josiah.  

We will keep you posted!  Thanks for your support........

This is a short clip of his heart beat... they were monitoring it after the procedure to make sure that he was ok..... I just love to hear his heartbeat!  

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.