Wednesday, October 23, 2013

A new year and a new blog

This past Saturday was my 28th birthday (ahh) and it was really a great day.  We were in Missouri for the Gator football game, no need to talk about that one.  We got to spend the weekend with some of our closest friends and just enjoy life! 

Since I am starting a new year I really want to start a new blog.  This blog really feels like it belongs to Jackson.  In addition there are several other reasons for the blog change which I will share on the new blog.  I plan to still blog on here some, mainly regarding Jackson, but I really want to start a new chapter in my life.  That does not mean I will ever forget this past year, but I need to move forward some. 

I really hope each and everyone of you will follow me on the new blog!  If you want to please email me at carolinempurvis@gmail.com.

Hope to talk with you all soon!
Caroline

Wednesday, October 9, 2013

Capture Your Grief: Day 9. Music

Capture Your Grief: Day 9. Music
He Said by Group 1 Crew

If you have never heard this song I strongly recommend you stop and listen to it.  I mean really listen to the words.  When we started the treatment process, on my very first trip to the RE's office to meet DeWayne this song was on.  I turned it up and really felt this song was one I needed to hear and really listen to.  After that visit every single time I went to the RE's office for any appointment I played this song.  I played it on the way to retrieval, I played it on the way to transfer.  Every ultrasound appointment, nurses appointment, I played this song on my way in. The day we found out Jackson had CDH I listened to this song.  On the day my water broke, I did not play it (in a little bit of pain!), but I sang it over and over in my head.  I listened to it often in the hospital that week.  This song is God's promise to me.  It is His promise that He will never give me more than I can take, He may let me bend, but He will never let me break, and most of all He will never let me go! 

This song has been my rock for the past year and I know without a doubt that as many times as Jackson heard this song play and heard his mother try and sing, horribly granted, along with it that he knows every word to this song! This song will forever remind me of our journey this past year.  

There are several more songs that helped me get through this past year and hopefully one day soon I will post them as well. 

Here are the lyrics:
"He Said"
(feat. Chris August)
So your life feels like it don't make sense
And you think to yourself, "I'm a good person"
So why do these things keep happening?
Why you gotta deal with them?

You may be knocked down now
But don't forget what He said, He said:

"I won't give you more, more than you can take
And I might let you bend, but I won't let you break
And No-o-o-o-o, I'll never ever let you go-o-o-o-o"
Don't you forget what He said

Who you are ain't what you're going through
So don't let it get the best of you
'Cause God knows everything you need,
So you ain't gotta worry

You may be knocked down now
But just believe what He said, He said:

"I won't give you more, more than you can take
And I might let you bend, but I won't let you break
And No-o-o-o-o, I'll never ever let you go-o-o-o-o"
Don't you forget what He said

Don't fear when you go through the fire
Hang on when it's down to the wire
Stand tall and remember what He said:

"I won't give you more, more than you can take
And I might let you bend, but I won't let you break..."

"I won't give you more, more than you can take
And I might let you bend, but I won't let you break
And No-o-o-o-o, I'll never ever let you go-o-o-o-o"
Don't you forget what He said
Don't you forget what He said
Don't you forget what He said (I want give you more)
I want give you more
What He said


Tuesday, October 8, 2013

Capture Your Grief: Day 8. Color

Capture Your Grief: Day 8. Color
 
Fabric selected for Jackson's Bedding
 
I have had colors picked out for a baby boy or girl for years! For a boy I have always loved blue and brown.  I just think it is so simple, but classy.  My mom and I had picked out this fabric for his cradle bedding.  She had made the sheet, but that was all.  I don't know what I will do with the sheet now, but I will always think of blue and brown with Jackson.  My parents bought blue flowers for the top of his casket as well.  Blue is my favorite color for sure, so I like to think it would have been his as well.  


Monday, October 7, 2013

Capture Your Grief: Day 7. You Now

Capture Your Grief: Day 7. You Now
 

 
Right now I am really focusing on getting myself in a good place physically, emotionally, and spiritually. I love the gym and I have always felt more like myself when I am working out. I really struggled with not being able to work out while I was pregnant and I loved being back at the gym. One of my good friends has been amazing and is working out with me. I love our time at the gym together and I love the support she shows me. When I am at the gym I feel like myself again.

Capture Your Grief: Day 6. Ritual

 
Capture Your Grief: Day 6. Ritual
 


 Before we tried to got pregnant with Jackson, my faith was strong so I thought. Today, I strongly believe that my faith is stronger than it has ever been. I am reading so many great books about faith, pregnancy, loss, and finding God's purpose. Of course one of these great books is the Bible. I am thankful for Jackson that he made my faith so much stronger.

Capture Your Grief: Day 5. Memory

 
Capture Your Grief: Day 5. Memory
 

Jackson Loved Thin Mints!!!!
 
Ok so this is one of my favorite memories of Jackson!  I had ordered girl scout cookies from my cousins and had decided that maybe I could keep them down.  I love thin mints, so I started there.  Well I kept them down and Jackson loved them!  He was never more activity than when I ate thin mints.  DeWayne would get so irritated at me for eating them to just make him move, but I loved to do it.  Now I am so thankful that I ate probably 4-5 boxes of thin mints, because I got to feel Jackson move so much more.  I will always think about my little boy anytime I eat thin mints now and smile. 

Capture Your Grief: Day 4. Legacy

 
Capture Your Grief: Day 4. Legacy
 
(I am a little behind, but I am going to try and catch up now.)
 
 

 Jackson's Memorial Foundation at UF
After Jackson was born it was really important to us that he be remembered and that he have a legacy. We started the CDH Memorial Foundation at UF in his memory. I love this foundation and pray it continues to raise money for CDH research at UF. We have been overwhelmed so far with the number of contributions. Jackson will really help other babies with CDH which is an amazing legacy!

Thursday, October 3, 2013

Capture Your Grief-Day 3. Myth

But you knew he was sick...


We have been told this so many times, but you knew he was sick.  While it may have helped some, it does not make it easier really.  We knew he might never come home, but knowing it might happen and it actually happening are two completely different things.  There are so many other myths about our situation, so maybe one day I will find time to write about all of those myths. 

Wednesday, October 2, 2013

Capture Your Grief-Day 2. Identity

 
Day 2: Identity
 
This was a hard one for me, because I really wanted to use a picture that I have and we don't have a picture of his name, Jackson Dean.  Once I realized that it made me really sad.  We never got anything made with his name on it before he was born.  We are still waiting for his headstone, so we don't have that yet.  These are his little feet.  They look so much bigger in then picture to me than they really were (hard to imagine I know).  I love the fact that he was born after 24 weeks and therefore has a birth certificate and we have things like his foot prints.  These are things I will forever value. They help him to have an identity in this world. 

Tuesday, October 1, 2013

Capture Your Grief- Day 1. Sunrise

I really want to thank Life is Hard for notifying me of the Capture Your Grief Photo Challenge for the month of October through her blog. 
 
Day 1: Sunrise in Sanibel, Florida July 2011 

              
This photo was taken during vacation with DeWayne's family in the summer of 2011.  This was the summer before I went of birth control and we started to "try".  I am not a morning person so to be honest this was the only sunrise photo I could find that  took. 
 
My grief for Jackson has really changed over the past 2.5 months.  While I miss him dearly and wish things had been different, I know he is in such a better place.  I do not cry for him very often anymore.  I can talk about him and smile with no tears.  I can and do look at his pictures often.  I have a peace about his passing and that is really what I see in this picture.  It is a peaceful picture, as we were headed out on the boat before dawn to fish, just DeWayne and I.  The water was calm, there was a breeze, and the world was still sleeping.  All was peaceful.  I know the sun will come up and that with it may come a stormy day full of emotions, but right now it is dawn, beautiful, and peaceful and I am enjoying it.                
 
I have not really posted a lot publicly about Jackson.  All of our close friends of course know and we had posted an announcement on Facebook, but I have not mentioned anything on there since he was born.  Today for the first time, I posted this exact picture on Instagram.  I captioned it and used the #captureyourgrief.  It felt good to be more open and more public about it.  Maybe over this month I can open up even more. 
 

Monday, September 30, 2013

What is the worst case?

Sorry have been MIA, I am trying to apply for jobs, finish my dissertation, and write as many journal articles as possible between now and November 1!!!

I had a great conversation with a friend today and I just had to write it down.  We are still waiting for our test results. The results that will indicate if it is medically recommended for us to conceive biological children.  As we were talking I told her about our plans if the tests come back that we should not.  She indicated that she did not want to think that way for us, but pray for a positive outcome. That is when it hit me: what is the worst case situation? Some would say it is if we can't have biological children, but really is that bad?  It would mean that we would adopt a child whose biological parents are not able to be parents at the moment.  That is not a bad thing! That is a miracle in of up it's self!  That is God working for the good of those who love Him.  There is nothing greater than that in this world.  The Bible talks about adoption more often than I ever realized. 

Jame 1:27 says "Pure and genuine religion in the sight of God the Father means caring for orphans and widows in their distress and refusing to let the world corrupt you".

Matthew 18:5 says "And anyone who welcomes a little child like this on my behalf is welcoming me."

We all love the story of baby Moses in the basket, but we often ignore the fact that Moses himself was adopted: Later, when the boy was older, his mother brought him back to Pharaoh's daughter, who adopted him as her own son. The princess named him Moses, for she explained, "I lifted him out of the water." (Exodus 2:10).

Another example of a famous Biblical individual who was adopted: "This man had a very beautiful and lovely young cousin, Hadassah, who was also called Esther. When her father and mother died, Mordecai adopted her into his family and raised her as his own daughter." (Esther 2:7).

To have the opportunity to adopt would be a blessing and is in no way a negative outcome from the tests.  Keeping this in mind, we will wait for the results and pray accordingly for God to lead us according to His plan for our lives. 

Wednesday, September 18, 2013

One step forward, two steps back

I honestly feel that we are taking one step forward and two steps back all the time. We met with Dr. Gregg today and let me tell you my prayer from earlier today was spot on.  Patience is not something I am great at, but it is something I am/have been working on.  Well I am going to need it. 

Without going into a ton of detail (mainly because it is boring and I don't think I could explain it very well) we need to do more genetic testing on the two of us before we proceed.  The results from Jackson indicate that this is best decision before we proceed with trying to have biological children.  I know without a doubt that this is the best decision, but I am frustrated that there is even a need for us to do this. I want to know with as much certainty as possible that we are genetically compatible.  Right now we do not know this. 

Of course to do this there is a nice price tag attached.  The genetic counselor we work with during our last pregnancy is so great and is working with the lab to try and work out a financial deal for us given the situation.  So pray for this as finances are really starting to become an issue. 

Based on the results of the genetic testing we will either proceed with a FET or move towards adoption.  We are open to both and if infertility was off the table we have always considered adoption.  Adoption is such a great blessing and we have always felt called to adopt, so this maybe God's way of showing us this is His plan for us.

Right now we are praying for us to be still and listen.  We know that God has a plan for us and for our family, and when we are still and patient and listen we will know what His plan is.  We really would like to be able to do FET, but if that is not what God has planned for our lives we will move forward with adoption.

Dear God,

Dear Heavenly Father,

Thank you so much for the amazing gift we received yesterday with our next FET cycle being covered.  Lord, this opportunity has been our prayer for many weeks now and we thank you for being so faithful. 

We pray Lord this week that we will be still and listen to your plans Lord and not to our desires.  We are leaving shortly Lord to visit with Dr. Gregg and review Jackson's autopsy report and to hear how he would proceed with another pregnancy.  We know Lord that he is a man of faith and we praise you for this.  We pray for him as he guides us towards our future that he will listen to you and follow your plan for our lives.  We pray for our full understanding of the results, they will be bring us additional comfort during this time.

Lord as the week continues we will meet with Dr. Williams to discuss doing FET.  You have been so great to us with providing us amazing doctors who all believe in you and we thank you for this.  We pray Lord that we are open to his suggestions and are willingly to listen to you.  We pray that we listen with our hearts, our heads, and our souls. 

We thank you for all that you have provided us with and we pray that we are able to continue to listen to your plan for our lives. 

Amen.

Tuesday, September 10, 2013

But I don't like that one

I maybe about to sound like I have completely lost it but I am going to share anyways.

When you are getting ready in the morning and really want to wear an outfit to work, do you ever not wear it because of the bra you have to wear with it?  We all have favorite bras right (again I maybe sounding crazy!), but we all have some we prefer not to wear.  I have these two great maxi dresses that I got at Ann Taylor Loft Outlet, but I have to wear either a strapless bra or a criss-cross bra with them.  I just want to be able to wear a regular bra with them.  As a result I end of not wearing them as often as I would like.  I have several shirts and dresses that this happens with. 

Guess I just need to go bra shopping....  

Girl problems that really compared to everything else in the world are no big deal, but if we aren't careful we allow them to take over our lives. We must remain focused on what's important in life, which in most cases is not what bra we are wearing, unless of course we aren't wearing one. 

Saturday, September 7, 2013

Two more join the trenches

My friend, AG, who I mentioned a few weeks ago was pregnant had a miscarriage.  We were pretty sure she was about two weeks ago, but she found out for sure this week that she did.  I really hate this for her and her husband.  While they got pregnant the first month they even "tried" which I am pretty sure consisted of let's have sex, I still hurt for them. Fortunately she did not need any medications or D&C and has been cleared to try again whenever they would like. 

Another family friend and his wife experienced a miscarriage about a week ago as well.  She was about 9 weeks along with their first and had to have a D&C.  My mom is close to his mom and is just do devastated as this would have been their first grandchild.  I have emailed with him a little bit and they seem to be doing well. 

Both couples are amazingly strong Christians and have spoken about how they know God has a plan even bigger than ours.  I hate that two more couples have had to join the trenches and know the pain of losing a child, but I am so thankful for their faith.  God is truly using all of us through these experiences.  We may not know how or why, but that is why we must have faith.  As Hebrews 11:1 reminds us "Now faith is the substance of things hoped for, the evidence of things not seen." With time we will begin to understand God's plan for our lives, but until we must have faith that His plan is greater than ours. 

One thing I have learned through their loss is that people are afraid to talk to DeWayne and I about their losses, when they have early miscarriages.  They feel their loss is so insignificant compared to ours.  Initially I thought, "yes it is you are right", but I have realized that it is not really all that different.  We have all lost children who we had prayed for and were already in love with. We have all lost the dream of becoming parents in the near future.  In many ways I feel like it would be harder to lose a child during an early miscarriage, because it is harder to find a purpose in the loss.  I spoke with a friend, who has experienced the loss from an early miscarriage and the loss at 25 weeks.  He said in so many ways the early miscarriage was harder for him and his wife to understand, but they have realized that both losses had amazing purposes.  He said had it not been for their losses their marriage would not be as strong as it is today.  They would not be the same parents they are today to their 1 year old little boy.  He is an assistant professor and says that before the losses he worked way too much, but now he realizes that spending time with his wife and son is the most important thing in the world.  His wife is actually the one I have blogged about before (regarding the loss of their little girl), and they are an amazing example of a great Christian couple for AG and I (she works with him as well). 

I am so thankful for all the individuals we have been able to talk with and share with during this experience.  I wish we did not have so many friends who were going through losses, but I am thankful for the opportunity to talk and pray with them.  For me I have to believe this is part of God's purpose in Jackson's life and part of His plan for my life.

Outer Banks Vacation

I love the state of North Carolina.  It has mountains where I can ski and the beach where DeWayne can fish. And the best basketball around!  What more could a southern girl want?? (Ok the football isn't great, but I can't have it all). I lived in Wake Forest, NC for several years growing up and just fell hard for the state. DeWayne has been to the mountains several times with me and to watch Carolina basketball, but we had not been to what would probably be his favorite part of the state: the beach. 

We decided after Jackson's birth we really needed to get away and just enjoy time together. We left the Wednesday night before Labor Day after I got off teaching at 8pm and headed north. We made it to about Savannah that night which left us with almost 10 hours for Thursday.

We drove through some really beautiful farm land and finally made it to the Outer Banks where we stayed in Hatteras. It is so beautiful and peaceful. We stayed on the beach and were able to spend time laying out and fishing. We had an excellent dinner on Thursday complete with a beach drink overlooking the sunset.  DeWayne loves to golf, so we went to Nags Head on Friday for him to golf. It was probably the most beautiful course I have ever seen.  Afterwards we ate some really good eastern North Carolina BBQ (another reason I love the state!).  Saturday was spent on the beach and watching the Gator football game. Sunday we drove to Greenville, NC to visit friends and to check out ECU. We loved the town and are very open to moving to this area if the opportunity arises. 

On our way home we were able to see my sister dinner which was a great way to finish the trip. It was a lot of driving, but that turned out to be a blessing. We were able to spend time just the two of in the car talking and enjoying the quiet.  Here are a few pictures from our trip. 


The sound by the golf course.

Another one of the sound.
 


Dinner view the first night


DeWayne throwing the casting net, while I lay out and watch the pole
 
I realized when we got back that we never took pictures of us on the trip!  DeWayne hates to take pictures so it can be a challenge to get any of us. 

~Caroline

Friday, September 6, 2013

More personal

One thing I have really been thinking about for a while is being more personal on this blog. For a long time I wanted to stay anonymous. I didn't want my name out there or really any identifying information. This was mainly because I was worried that as people search for me based on my career they would come across this blog. I was worried what they would think about us doing IVF and everything because of how it might impact my career path. But I a, not worried anymore. This is all part of my story and God has called me to share my story to anyone and everyone. Academia can be harsh on women in general without having infertility as a factor. However, I don't want a job under false pretenses. I want to be a professional and I want to have children. And guess what I can and I will have both!!!! I will find a place where the administration is supportive of who I am including the infertility part. 

So let me introduce myself officially to you: my name is Caroline and I am married to the love of my life DeWayne. I am 27 and he is 28 and we live in Florida where I am finishing my PhD at UF and DeWayne is a physical therapist. We love to travel and watch Gator sporting events. We are involved with the youth group at our church and love the time we get to spend with them. 

I will work to be more open with you all as you have all opened your hearts to me during these past few weeks. Thank you all and words cannot express how much you all mean to me. 

~Caroline 

So many thoughts so little time

I have so any blogs I want to write.  I have a tendency to think of all these things I want to say while I am driving and clearly can't post.  I have been working my butt of trying to get some of my research articles published (way easier said than done). This is my last year in my PhD program and job applications are starting to be due for next August so I really want to make my vita as robust as possible. 

With all the school stuff going on, trying to finish my dissertation, writing journal articles, teaching almost 400 students this semester, and working on a grant I have been feeling a little overwhelmed.  All of that has really helped me to feel more like myself.  I love what I do at school. I love doing research and teaching. Spending time with students makes my day! I am looking forward to getting a tenure track position (sometime in the next few years for sure).

With everything going on I haven't really been focusing on Jackson. Of course this makes me feel bad. I of course still miss him, but I am really feeling this peace about it all. I don't cry very often anymore. I can talk about him, what he looked like, what I know about him, all about his conditions without shedding a tear. I think I will always miss him, but I know this was God's plan for him and for us.  

So now what?  I am conflicted but honestly it's not because of why you think. I am conflicted because of my career. I know there is no perfect time to become a mom and I know that there is no guarantee that I can get pregnant again, but is this next year a good time???  I mean I am suppose to be graduating with my PhD and beginning my career that I have worked for since I graduated high school 9 years ago. Well we have a plan: there will be no planning. DP has says we are not making an plans based on what ifs. We are meeting with our RE on Sept 20 (2 weeks from today eekkk!!!) and whatever he suggest we are going to do. We are completely open to doing an FET in the next few months or if he thinks we should wait we will wait.  

We have realized that while we are planners by nature, God is the ultimate planner and the only one who's plans matter. If I happen to be pregnant and due at the beginning of the next school year we will deal with that when it happens. If I am not then we will deal with that when it happens. This is a huge deal for me! I plan everything and have a what if plan for absolutely everything. Well I am really trying to allow God to be the planner and me to simply follow His lead. I can't wait for our appointment in two weeks and am trusting God in the decision we will make. 

Monday, August 26, 2013

Church

We went back to church yesterday for the first time since Jackson was born.  A  lot of people may wonder why we haven't been back before yesterday.  It has absolutely nothing to do with us being angry with God.  I know that anger is a normal part of grief, and while we experienced it a little bit we were never angry at God.  We truly believe that God had an amazing purpose for Jackson's life and everyday we are being shown just how special our little guy was and how his purpose is long from over.  So we did not miss church because we were mad or angry. 

We attend First Baptist Church, which is the church I grew up in for the most part and the church where we were married.  There are so many things about our church that I love, and of course plenty of things I don't like.  One of the things I love is that so many members of the church have been in my life since I was in elementary school.  Some of them are like grandparents to me, others parents, and even others siblings.  The support they have shown for me for over 20 years has been amazing.  They have supported DP and I during our marriage and through infertility (those who knew of course).  We had so many visitors from the church to the hospital before Jackson was born.  After he was born they made so  much food for us and our families and it was an amazing blessing.  The number of cards they have sent exceeds 50 for sure. 

So why have we not been back to church until yesterday?  For that exact reason: they are like family.  It is so hard to hear I am sorry.  It is so hard to have people hug us and express their sympathy.  I love them all and love that they care, but I am honestly exhausted.  I am exhausted from the caring, which sounds horrible I know.  Those closest to me that I see every week have found a way to return to normal around me, but still be understanding that I have bad days still.  I felt that going to church and seeing people for the first time was something I would rather just skip over. 

Well yesterday one of girlfriends from church was preaching.  I really wanted to support her, so we decided to go. Let me preface by saying she and her husband lost their 3rd child at about 14 weeks so she does understand loss of a child.   We would get there late and sit in the back and leave early.  Sounds easy enough right? Wrong!  We got there right at the greeting.  We did manage to sit in the back and leave early, but not without being notice by far too many people.  Oh and guess what I forgot to do?  Look to see what my friend was preaching on!   Well the scripture was Jeremiah 1: 4-10. If you are like me you don't know that verse off the top of your head (I do now!)

The word of the Lord came to me, saying,
5 “Before I formed you in the womb I knew[a] you,
before you were born I set you apart;
I appointed you as a prophet to the nations.

6 “Alas, Sovereign Lord,” I said, “I do not know how to speak; I am too young.”

7 But the Lord said to me, “Do not say, ‘I am too young.’ You must go to everyone I send you to and say whatever I command you. 8 Do not be afraid of them, for I am with you and will rescue you,” declares the Lord.

9 Then the Lord reached out his hand and touched my mouth and said to me, “I have put my words in your mouth. 10 See, today I appoint you over nations and kingdoms to uproot and tear down, to destroy and overthrow, to build and to plant.”

Yep that was the scripture that was used for the first sermon that I hear after Jackson's short time on earth!  Let's just say I lost it during the children's sermon when the scripture was first read. I ended up having to walk out and regroup and then come back in.  I did recover nicely and did not cry at all during the sermon (crying is ok don't get me wrong, but I hate crying in public and it really irritates me when I do).  At first I was irritated that God would put me in this position. That He would bring me to church on this day to hear this scripture.  But then I realized that He did it on purpose (as always!).  He wanted me to hear Melissa preach and to hear what she had to say.  She talked about how each child has a specific purpose from God.  That this verse tells us that not only does God have a plan for each child, but that He has His plan long before we even think about that child.  God has been planning each child's future and their path long before we were.  He knows every hair on their heads and He knows everything there is to possibly know about them.  He knows this about each and everyone of us.  As she said He knows this about every child who lives and who dies.  How amazing is it to think that God has this huge plan and knows each of us and other children before they are even formed in our wombs? I have of course read this scripture plenty of times, but I heard it, I mean really heard it for the first time yesterday.  As always God continues to have a purpose in everything that happens.  He had such an amazing purpose in having Melissa preach yesterday and for me sitting in the back to hear it. 

Even when I want to get annoyed at God, He makes it so I can't because He continues to show me that He has an amazing plan for DP, me, and our children who have not even been formed in a womb (mine or a birth mothers) yet.  Praise God for this!  I know so many of you are still in the trenches of infertility, but please take heart in knowing that God has it all under control.  That God knows your child/children already.  He knows the number of hairs on their heads.  He is just waiting for His perfect timing to introduce us.  When His timing is perfect it will happen and it will be the most amazing moment ever. 

Saturday, August 24, 2013

Jackson's condition

I am a researcher.  It is what I do and what I love.  So when we got Jackson's autopsy results I of course had to research it and read journal articles that exist on the condition.  I found this absolute Godsend article! It is written by doctors at Mass Gen in Boston, which is actually the doctors we are working with.  We are apart of their study and for this I am so grateful.  This article shows that even if Jackson had made it 40 weeks, his chances of surviving would be way less than 20%.  If he had survived more than likely his quality of life would have been very low.  It also shows that of all babies diagnosed with CDH since 2000 and apart of the registry, approximately 4,888 babies, only 23 (.05%) had the exact same condition as Jackson!  Wow! Our little man really was special.  I pray that because of this he will truly be able to help over babies as this opportunity is oh so very rare.  We love our little man so much and know that God has an amazing plan for him and He continues to show this to me everyday.  We have had so much support for Jackson's memorial and we are so blessed by this opportunity.

Here is a link to the article if you are interested in reading it CDH Article

Monday, August 19, 2013

Roller Coaster Day

Today has been such a roller coaster day that I don't even know where to start.  I guess the beginning is as good of a place as any. Woke up this morning and I was bleeding more than I had been the last few days. I started spotting on Friday, but I wasn't positive it was my period since I also have a yeast infection (yuck!). I got ready because I had to go to my OB appointment.  I love my OB, she is beyond amazing, but I really hate going now.  DP could not go today, so I was on my own.  When I got there, several pregnant women were in front of me whining about feeling miserable etc.  It took every bit strength I had not to yell at them and tell them that if they thought they were miserable they should try my life!  Only through the grace of God did I not say anything to them.  Finally it was my turn, and I was checking in when I saw my ultrasound tech.  Now we had so many ultrasounds and I always requested the same lady, who I love to death.  Well she ask me if I was here to see her today.  I almost lost it.  I knew she did not know and simply meant nothing by it.  I told her what happened and she came around the counter and gave me a huge hug and said she was so sorry.  I was not mad at her at all, she would have had no way of knowing. 

Finally I went back with the nurse we have had the whole pregnancy and had 3 weeks ago at my last appointment.  When we got to the room she was asking normal questions: vaginal delivery or c-section, blood pressure, temperature, etc. Then she ask if I was breast feeding!!! I almost bust out into tears.  I told her he did not make it.  She felt horrible, said sorry and quickly left. At this point I just wanted to leave. I wanted to run as far a way as possible from this stupid office.  I started texting my best friend and that really helped and she reminded me that I love my OB and she would in soon.  My OB came in and could tell something was wrong. My ultrasound tech had talked to her and felt so bad. When I told her about her nurse I seriously thought she was going to loose it! Now my OB is not even 5' but I could be scared of her mad!  She assured me that would not happen again.  I am sure it will not happen to me ask or another lady with that nurse. 

We went through the normal post-paradom check-up things and everything is good.  Then I ask her to check on the autopsy and genetic reports.  They were in! My heart was racing as she was opening them.  Inside these reports would lie the truth about my little man.  First thing we read was the genetic report.  Now I have to say I almost have a PhD and she has an MD and both of us had no idea what some of the words were on this report! Needless to say we are going to see Dr. Gregg to have him explain everything to us in a few weeks, but the overall results indicate that he had not genetic abnormalities!  This is a huge blessing!  The only thing they showed was something on chromosome 7, which as it turns out is the cancer gene.  So that has nothing to do with anything really.

Next was the autopsy report.  This would tell if he really had CDH and if he had anything else major.  Well he not only had CDH, but he had a very serious case of CDH.  His left diaphragm was basically nonexistent and his liver was involved.  His case of CDH was very serious and even at full-term might have been fatal.  He would have needed a lot of life saving procedures, which could not have been performed until at least 34 weeks.  The report also found that his trachea and esophagus were fused.  We did not know this prior to today.  I still don't know a lot about it, but the kind he had could have been fatal as well and even at full-term would have been a very serious medical condition.  The combination of these two abnormalities even at full-term would have probably been fatal. 

In a weird way these makes me feel better.  As my OB said she feels like God knew if Jackson lived until we could meet him and learn everything about him in order to help others that we would do what was best for everyone, but that He did not want to put me through 40 weeks of pregnancy just for this outcome.  I think she is right. It is easy to say sometimes and not mean it but God really does have it all planned out and does know what is best for us.  Trusting Him can be hard, but when we do amazing things happen!

My OB released me back to my RE and we will go see him in 7 weeks!  I just need to set up the appointment.  I can't wait to see what he has to say and move forward with bring home a baby. 

After I left my appointment I headed to campus.  I met up with one of my best friends to head to Starbucks before our long never-ending orientation!  We talked about Jackson and the results and it was great sharing with her.  Then she dropped a bomb on me: She is pregnant!!! Now I knew she was trying so it was not a huge shock, but she has only been trying 2 months!  She was by my side the entire IVF process and the last 5 weeks.  I was and still am so excited for her.  I would never wish anything I have been through on anyone.  I had made her promise a few weeks ago that she would still tell me, so I am so glad she did.  Today I am happy for her and am planning to make her a care package full of stuff she will need.  I pray I will continue to be happy for her as the weeks continue. 

Saturday, August 17, 2013

New Normal

I am trying to find my new normal.  I am not exactly sure what it is or what it looks like but I am trying.  I am back at work on campus 2 days a week (like before) and am working on my dissertation the other 3 days a week at home/Starbucks.  We are going to the gym fairly regularly.  We have been going to dinner with friends often and out for drink on the weekends.  My life from the outside looks like it is back to normal, but the inside I feel like I am just going through the motions.  I don't want my life to go back to normal.  I want my life to change.  I want to be pregnant still.  I don't want to be able to drink or workout.  But apparently this is my life for now. 

It has been just over a month since Jackson was born and passed away.  I don't cry as often as I did which at times makes me sad.  I feel like I am moving on which I know is importantly but I don't want to in someways.  I don't want to forget Jackson, I know I will not ever really forget him. 

All of that being said I want to try again.  I really truely do.  I want a second child. I have always wanted more than one child and I still do.  I have always wanted to bring a child home and I still want to.  We talked to my OB about trying again a couple of weeks ago and she feel likes we can probably try again in about 3 months.  We are going back to my RE in October to see what he has to say.  One positive thing is that we have 4 frozen embries so we would not have to go through a fresh cycle (praise God!).  There are about a hundred steps we need to get through between now and trying again, but it is my focus right now.  I am just focusing on October and the possiblity of being pregnant again sometime this year.  Yes I did not love being pregnant (probably because I was so sick everyday!), but I want to be pregnant again soon.  My friend who lost her little girl at 24 weeks, was able to get pregant 3 months after and said it really was the biggest blessing ever.  Her little boy is amazing and as she points out she would not have him if their little girl had lived.  I want to meet our rainbow baby who would not otherwise be here.

Thursday, August 8, 2013

Crossroads

I had the wonderful opportunity to talk with the wife of a guy from work with this week, as they had also lost their first child at 24 weeks.  They are a great couple that we have hung out with them a couple times, but she and I had never sat down and really talked just the two of us before. It was so great and helpful.  She made me feel like everything I am feeling and experiencing is normal and not to worry about what other people think.   We had so much in common about how we felt in the weeks following our losses. 

She said a ton of really great things, but one thing that really stuck with me.  She mentioned that right now I am at a crossroad in life.  My life course has changed from the path I was on 4 weeks ago.  But I now have two options of a path to take.  I can either choose path A: this path is one in which I let this moment define me in a negative manner. I can sit back and feel bad for us about what happened.  I can be angry and just upset about everything.  Or I can take path B: where I take this experience and learn from it. I allow God to use this opportunity for the better and grow as a result of this.  She said that either way my life as I know it has changed, its just up to me how I allow God to use this experience.  She said to think about when I am 60 years old and I look back at the year I was 27, how do I want to remember that year?  Do I want it to be a year of regrets or a year full of positivity and a year I really grew for the better from? 

This really struck a cord with me.  I feel like I know so many women who have either miscarriages or infant losses who allow themselves to be defined by these experiences.  While this experience can still define me in a way, I want it to define me for the better.  I want to look back on this year and be proud of who I was this year and who I became as a result of this year.  I want Jackson to be proud of who he made me become.  Not only did he make me a mom (for which I will forever be grateful) but I want him to make me a stronger women and a better person in general.  I choose to make this a positive experience in my life.  I choose to not allow this experience to get me down or make me a negative person.

Fertility problems by themselves can change us.  So what do you choose?  How will you allow this experience to change you?  It is up to you if you want it be a positive change or a negative change, either way it is going to change you. 

Tuesday, August 6, 2013

I wish...

I wish a lot of things lately, but given the current situation I wish I didn't want anymore kids.  I know that probably sounds horrible, but it's true.  I wish I know longer desired to have more kids.  I wish my heart did not long for a child at home.  I wish my arms did not physically ache for a child to hold.  I wish I could just be satisfied having my little boy in heaven and with my amazing, loving husband.  I wish my job was enough to keep me busy so I would not want to have another child.

But I do!  I want to bring home a baby so much worse than I ever imagined possible.  This time last year I had never been pregnant.  I was getting frustrated that we had been trying for almost a year and while I knew it was very likely that we would need IVF (due to the endometriosis) I still was frustrated that I could not get pregnant.  I thought I really wanted to have a baby. I thought I really wanted our lives to change.  I thought I longed for child.  But I had no idea! 

Now I physically ache.  Now I am a mom, just as I have always wanted to be.  Now I have held my dream only to have it taken away from me 2 hours later.  I just want to be a mom to a child at home.  Right now I am a mom with no child at home to love, to care for, to nature.  I thought not being a mom was the worst feeling ever, but boy was I wrong.  The worst feeling ever is to be a mom with empty arms. 

So what do I do now?  Do I try again to make my dream come true with a FET?  Do I adopt one of the million of children who need a home?  Do I try to push this feeling away and pray it goes away?  Do I continue to physically ache for a child? 

I wish so many things...

Tuesday, July 30, 2013

Good days

I know I have been MIA for the past few days but its actually a good thing.  One of my very good friends MR came on Wednesday for the afternoon which was great timing because DP had to go to a work meeting that afternoon, leaving me for the first time. My best friend LH then came on Thursday which worked out even better because DP went back to work full time that day.  It was so great to have her here.  She lives in Athens, so we don't get to hang out as often as we use to for sure.  It made me so happy that she was able to come and we got to spend so much girl time.  She is one of the only people besides DP that I really feel comfortable talking to about Jackson and really being able to be honest about how I feel.  I hate crying period.  I really hate crying in front of people and rarely do it to be honest.  I will cry around DP some but only if it is really something serious, like the past few weeks.  LH is one of the only other people I will cry around so it was great that she was here and I was able to cry and talk with her.  We stayed up way to late several nights and worked a 1500 puzzle in like 12 hours! It was crazy and awesome:-)  We went to Payne's Prairie in town  with my mom. Neither one had ever been to this amazing place where there are literally hundreds of alligators and wild horses.  I love it so much.  Here are pictures of it from a different trip, I didn't take my camera this time. 



It is such a beautiful relaxing place and I love to go and just walk around.  Afterwards we went to Bentos because I really wanted sushi!  This was the first time I had been out really in public to eat.  We had gone the day before in the middle of the afternoon to get pedicures (awesome of course!) but let's be honest I was not worried about seeing people I knew then.  I was kind of nervous about being out and seeing people so we sat in the corner and it was great.  Overall Saturday was a great day. 
 
Sunday my in-laws come into town and DP helped his sister start to move out of her apartment. I spent the afternoon with my parents, brother and sister-in-law.  DP also planted a rose bush his parents had bought for the funeral.  It is nice that we can have an additional reminder of Jax.  After leaving my parents, DP suggested we stop by the cemetery.  My parent's house is only about a mile away from it so I figured this was a good time. I knew it was going to be hard to back there for the first time and it may be hard to go back always but I wanted to.  It was hard, and I cried when we got there and walking over, but once we were there I felt better.  I was glad to actually get to look around at those who are laid to rest near him. At his funeral I was not for that, so it was good.  He got to talk about him and to him a little bit.  We of course promised to come back and said see ya later little boy when we left.  I love saying that to him! 
 
Monday we had our doctor's appointment with my OB whom I love!  DP has talked to her and text with her but I have not since before Jax was born.  The visit was great.  She said she feels that we are really doing great and that she is really happy about where we are emotionally and where I am physically.  She even cleared me to return to the gym!!! I plan to write an entire post of this alone but let me just say the #1 thing I missed during pregnancy was the gym! I love the gym so to be able to go back makes me feel like myself again more than anything else.  We talked about what now some.  She said she feels really strongly as do our other 2 high-risk OB's that the only reason my water broke and he was born so early was because of his conditions not that my body could not carry him.  We are still waiting for some of the genetic testing to come back, but all the blood test they ran on me indicate that I did not have an infection or an incompetent cervix, or anything else to cause this.  We pray all of this is true as it would be the biggest blessing we could imagine given the situation.  We know and have known that little Jackson was a sick little boy who fought so hard to stay here on earth with us.  She feels like with the blood clot, 2 threaten miscarriages, and the CDH that my body was trying to say for months that something was wrong and really was trying to miscarry him for a long time.  We are thankful that my body and him held on as long as it did.  By him making it to 25 weeks we feel he has so much more of an identity and a purpose that had I miscarried him at 5 weeks, 10 weeks or 14 weeks (like my body tried to do) that we would never have been able to know him and Dr. Kays would not have been able to learn more about CDH from us and from him.  My OB agrees completely!  She loves that we are doing the memorial fund.  She knows how much I love research ( I am a huge research dork!) and feels we are doing a great job of combing our/my love for research with our love for our son.  Speaking of the memorial fund we are already amazed at people who are donating!  It is such a blessing and words can not express our gratitude.  Anyways back to what now:  given that she does not feel my body was the cause of all of this she encourages us to think about having biological children still.  We have not been sure about this since we got the CDH diagnosis months ago.  Depending on the rest of the results, it maybe a possibility for us.  We do have 4 frozens which is a blessing at this point because I can not even think about doing a fresh cycle right now.  This is where we left it: we go back to her in 3 weeks and go back to my RE who treats me for the endometriosis after 3 months which should be in October.  I like this plan, I feel like it gives us time to decide what we want to do.  I know what I want, a take-home baby, but I am not sure how I want to get to that point, adoption or FET. We will pray about it between now and October and use the results as a guide as well.  Please pray for us as we think about this decision and for the results. 
 
 


Wednesday, July 24, 2013

So why???

So why did this happen to us?  Why did this happen to little Jax?  These are all questions that we ask are beg God to answer for us.  While I may not know all of these answer and they may just be answers that sound good in my head I have some answers.  (Please do not give me a theology lecture as my dad tried to do several months ago regarding God's plan.  These are my answers for now that I need to believe are true).

Here is my number one answer as to why this happened to us:  Because God knew we would use this experience in a way that would benefit others in the future.  Here is what I mean.  Jackson had CDH, which is one of the most deadly birth defects among babies in the US.  CDH is not a birth defect that many people know about, and babies die of the defect without parents ever knowing the cause of death.  The biggest problem is that parents are not allowing doctors to understand the cause of the birth defect. One of two things is happening: either the baby survives and the parents say sweet that is over and behind us and move forward, never allowing doctors to conduct genetic testing on themselves or their child. Or the child passes and the parents just want to be done with the whole situation and do not allow an autopsy or other testing done to further the understanding of CDH.  This is where we believe we come in.  God knew that we would allow doctors to try and gain additional knowledge from the three of us regarding CDH.  J

Jackson, like all of us, has a purpose in this world.  His purpose we firmly believe is to increase the knowledge of CDH.  Wouldn't it be great if we were all so lucky as to be able to easily identify our purpose in this world??  I believe that Jackson has several other purposes in this world as well.  It is through him that I have truly been able to experience a love for my husband that I really never knew was possible.  Hard times, like this, can either drive a marriage apart or bring it closer together.  My husband has been my best friend for years, he has been my rock, but honestly until this last week I am not sure I ever knew how much I loved him.  I have been in love with him for almost 9 years, but this last week my love for him has been so extraordinary that the word love doesn't hardly seem like enough.  We have prayed together and cried together.  We have even laughed together this past week even went it felt impossible. 

Ok I got a little off track of what I was saying.  Jackson's purpose:  I think later in life if/when we have other children either of our own or through adoption it will be because of Jackson and what he has taught us that I will truly be able to appreciate them and love them and never take a moment with them for granted.  I will want to tell them about their big brother who is in heaven looking over them.  I will teach them about CDH and encourage them to support the continued research.  I will teach them to never taken anything in life for granted, because nothing in life is guaranteed. 

So why did God give us a child to simply take him away 2 hours later?  Why did He allow us to go through IVF and for it to work the first time to just take it away?  Because He knew our love for each other and for Him was strong enough and that we would make sure that through Jackson other children and families will be saved the suffering we have experienced.  God' plan for Jackson was never for him to come with us, but for him to go home to heaven.  Jackson's purpose on this earth was so great in 2 hours and served an amazing purpose that I honestly can only pray I am able to serve a purpose as great in my lifetime. 

Just take time to think about your purpose in life.  Are you working towards God's purpose in your life? I know my goal in life is to achieve God's purpose for me just as I know Jackson Dean has. 

Please do not mistake this as me not missing my little boy. I miss him with every fiber of my being, but I have peace knowing he had a purpose and we have allowed God's purpose to prevail. 

Tuesday, July 23, 2013

1 week ago

This time last week I was laying in bed holding my little boy.  His time was almost up here on earth, but I was loving every second of it.  It already been a week but I can still feel the weight of his body in my arms.  I can still smell the sweetness of his newborn skin.  I can still feel his little fingers wrapped around my finger.  It has only been a week, but now I can smile when I think of him.  I can talk about him without the flood gates opening.  It has only been a week and I have so many more to get through before I see him again.  Many of those weeks will be easier than this past one.  Some maybe harder or just as hard.  But after one week I know that no matter how many weeks, years, or decades pass before I see my little boy again it will all be worth it to spend eternity in heaven with him.

It has only been a week, but I still say little boy this is not goodbye, it's simply see you later. 
Love,
Mommy

Monday, July 22, 2013

What I know...

There are so many things I want to post.  I have all of these posts written in my head, but putting them on paper (or whatever this is) is harder than writing them in my head. 

This post maybe the hardest for me to write, but it is really the most important post I have ever written.  I want to record what I know about my son. I may not know a ton, but I know so much about my little boy that I want to remember forever.

I know that he looked a lot like his father.  He had blonde hair like me.  He had the longest fingers and toes.  He had the flatest little nose, I think it was like DP's moms (the only thing we can figure).  I know he loved sugar! Anytime I ate anything with sugar my little boy would go nuts.  He would move and kick and I loved it so I would eat sugar just to make him move.  DP told me several times that I shouldn't do it, but I am oh so glad I did.  I loved eating sugar and making him move.  I know he hated to be squished (spelling).  If I was leaning over to paint my toes or anything that gave him less room he hated it! He would start kicking and punching like "mommy please stop I need more room"!  I know that he was a not a morning person just like his mommy.  Any ultrasound in the morning he would not be very active, but if it was afternoon he would be going nuts! He hated to have to his picture taken just like his dad.  He would often hide his face during an ultrasound as if to say no you can't take my picture. His dad hides his face in most pictures as well.  He had a firey personality.  He even flicked off one of the doctors during an ultrasound one day (we laughed really hard that day).  We joked that he liked to push his limits but always responded to discipline.  In the hospital the nurses would joke that he was always trying to push the limits, but when we did something to settle him back down that he would respond.  He hated juice of any kind! Any time I drank juice I would get sick, no matter what! He had the hiccups often.  During our stay at the hospital I was able to listen to him all day every day for almost a week.  He would get the hiccups multiple times a day and it was the cutest sound I have ever heard.  He was so active.  All the doctors and nurses always commented on how active he was especially for how sick he really was.  He was a fighter.  He fought so hard to stay here on earth with us. 

There are so many things that I don't know about him, including his eye color, but instead of focusing on what I don't know and may never know I am choosing to focus on what I do know.  I know oh so much about my little boy and these are all things I will remember for the rest of my life. 

Sunday, July 21, 2013

Jackson Dean

How does I even write this blog?  No one should ever have to write these words.  Our son, Jackson Dean, was born on Tuesday July 16, 2013 and passed away in the early morning hours of Wednesday July 17, 2013.  He was absolutely perfect. Everything happened so fast that I am not even sure still what happened.  One minute I was being taken off the monitors in preparation to be moved because we were both so stable and the next minute my contractions were minutes apart.  I will probably write more of the details later as I do want to remember them.  As much as it hurts to remember them I want to.  I want to remember because they are a part of the time I got to spend with my oldest son. 

So many bad things have happened.  Yet I am trying, really trying to find some positives in light of the all the negative.  Please don't judge me for anything I say because I am trying.  So what is a positive: DP and I got to spend just over 2 hours with our little boy.  We got to hold him.  Kiss him.  Tell him all about God and heaven and who he would see there. He prayed for him.  Our pastor came in and prayed for him and baptized him.  We took pictures with him.  We laughed with him.  We cried with him.  We loved him. 

While 2 hours does not seem like a long time to get to spend with your son (and it really isn't) it was so much longer than we expected to get to spend with him.  When they brought him to me I figured we only had minutes.  To have 2 hours gave me so much time to be able to tell him everything we wanted to.  I am sure there will be things later I wish I had told him, but so far I really feel like I was able to tell him everything I wanted to tell him while he was in my arms. 

Another positive: I did not have to have a c section.  I am not against having a c section, I think they are wonderful and fully support them ( I need to post an article written by a friend about c sections at some point).  I was willing to have a c section for sure if it would make a difference in his life or if my life was in danger.  Fortunately my life was never in danger.  We had been told that if I had a c section so early it would have possibly complicated the chances of fertility for me in the future and as we all know there are enough complications in that area to begin with (no idea if I want to get pregnant again or not just saying) so it is nice to have avoided this possible complication.  My body did everything it was suppose to do in labor.  I did not need stitches because he was so little. My uterus contracted back and did whatever the heck it was suppose to do.  I never got an epidural, I did ask for me but he was born probably 10 minutes after I ask for me.  Since I did not have one and my body did what it needed to do they were able to leave me alone to spend the 2 hours with my little boy.  The only pain meds I ever got was one Ibuprofen right after he was born.  I was not in any pain physically, but I am thankful that I did not have any pain meds in my body to make me feel drugged.  I was able to completely focus on my little boy and husband and enjoy the time the three of us had.  Now I will say that if I am ever pregnant again (again this is a big if right now) I will probably get the epidural.  I had always been one of those crazy women who said I don't want one.  I always thought I would just want to fight through it and said how bad could it be!  Well my little boy was tiny and I can honestly say that I can't imagine what women go through when they have a natural delivery of a full-term baby!  More power to you women! 

Another positive: My milk is coming in.  Ok so right now this is not a positive because there is nothing worse than having milk but no baby to feed.  But here is why this is a positive.  I had my boobs done several years ago.  I did everything I could to make sure I could still breastfeed (under the muscle, incision below etc) but there is no guarantee that it would mean I could.  Well apparently it worked.  My milk has been coming in so again if I ever get pregnant again I should be able to breastfeed.  I always wanted to be able to breastfeed and almost didn't get the surgery because I was afraid it would make it impossible.  So for now, despite the pain and frustration that it is coming in now, I am taking it as a positive. 

Another positive: Our little guy was so sick, but he is not in any pain anymore.  He was so sick with the CDH and he was so little and early he would have been in so much pain here on earth.  While I want more than anything for him to be here on earth with me that is selfish.  It is selfish for me to want him to be in the NICU hooked up to monitors fighting for his life. He would be in so much pain.  He more than likely would have never been able to be a happy little boy who was able to run and jump and play with other kids.  Now he can be. He can be in heaven running, jumping, playing in the nursery our grandmothers decorated for him.  He can be happy and in peace.  Earth is so such a harsh world and he will never have to know physical pain here on earth.  He will only ever know the love our heavenly Father.  Isn't that what we all want as parents for children to never know pain and only know love?  Our little boy gets to know that love forever and always. 

I want to keep blogging and use this site as a way to express my feelings. I am not talking verbally very much right now. I only talk to DP and have text with my best friend a little bit, but for the most part I don't talk.  I don't have anything verbally to say.  I want to try and express myself through writing on this blog.  Please feel free to read along, I understand if it is too difficult to read.  Thank you all for your prayers through this time. 

This isn't goodbye little boy, it's only see you later.