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. 

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. 

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. 

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.

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. 

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...