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. 

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. 

Monday, July 15, 2013

Wednesday July 10, 2013....the whole story!

First let me thank all of you wonderful ladies for you kind words of encouragement and support during this time!!! It has meant the world to me. 

So y'all want to hear the whole story of what actually happened on Wednesday and not just the PG version posted on our other blog?

I slept in til about 11:00 on Wednesday morning because DP and I felt like I was exhausted and really needed to rest while I could.  He does not work on Wednesdays so he got up about 8:30 and went to golf course and to get a hair cut.  I laid in bed for probably 20 minutes after I woke up then drank an ensure (which has been really common for me since I am trying to put on the pounds). I then got my computer and was doing school work in bed.  Around 12 I started to feel something weird in my belly.  I thought it was one of a couple things: I was hungry, I needed to have a bowel movement, or the ligament pain I have had previously back.  So I ate my leftovers from the night before (a wonderful salad by the way) and was able to have a bowel movement.  Now this maybe TMI but it is important, my bowel movement was more like diarrhea but I really did not think anything of it because I had eaten the salad the night before and it was a Mexican salad with some kick I figured little man just didn't like it.  I went back to working on the computer.  About 1:15 DP comes home he eats lunch, we chat and he says he is going to take a shower because we have an OB appointment at 3:30.  While he is taking a shower the pains are back.  I am frustrated thinking the stupid ligament pain is back, so I try to get comfortable and keep working.  About 1:40 he offers to clean the shower, I had ask him to probably 2 weeks ago and he still hadn't done it!  I tell him I want to take a shower first.  I get in the shower and the pressure of standing is insane!  I keep leaning against the wall of the shower letting the warm water run over my back.  Finally I manage to wash my hair and put conditioner in it and get out.  I sit down on our bed and tell DP to get ready we are going to head to the OB's office as soon as I get ready cause something is weird.  I brush my hair sort of put on running shorts and a t-shirt have just DP to hand me a hat to wear and am tying my shoes while sitting on the bed when I feel the most unusually feeling ever!!!! I feel like a water balloon is in my underwear and when I stand up it pops!  Water is going everywhere and I tell DP I think my water just broke.  He ask if I was sure or was I peeing!  Typical guy response right.  I tell him I have never had my water break but I sure wasn't peeing!  I drip to the bathroom where the water just keeps coming.  Sitting on the toilet I start calling one of our doctors while DP is calling another.  I ask him for a change of clothes and I love that he handed me a Polo Ralph Lauren dress out of the closet! Needless to say I ask him to just grab another pair of running shorts.  We rush out the door within 3-5 minutes of my water breaking at the 2:45 at the very most.

The hospital, Shands, is not that far away normally 15 minutes or so, but I can tell you we were there by 3:05 for sure! I kept telling myself not to yell at DP to drive faster or anything even though I really wanted to.  He did a great job of getting us here fast and safe.  We dropped the car off in valet and went to get on the elevators.  Now this one the time I started to panic. These elevators are the slowest ever!!!!! We literally waited for the elevators for about 10 minutes.  Once we got on we only had to go to the 3rd floor and they knew we were coming.  Within 2 minutes of getting to the 3rd floor we were in a triage room and being examined.  The room was flooded with doctors and nurses but I can clearly remember who the doctor was that found our little guys heart beat and said he was still alive! The best sound you can ever hear.  They checked me and I was 1 cm dilated and they began pushing medications. I really don't know what all they pushed except magnesium and steroids.  I got the steroid shot at 4:00 and had already been on the magnesium before that.  Every doctor I ask for was not in the hospital!  My OB did call my cell as we were in the triage room and assured me she was involved and would find out what was happening.  This was a huge relief. 

We were moved pretty fast to a room where the doctors continued to flood the room.  When we told them about his CDH, the situation became so much more serious.  We knew it would but I am not sure we knew how much more serious.  They began to prep me for a c-section because they could not get my contractions to stop or him from having de-cells.  I was scared beyond belief but also in shock.  I could not believe this was all happening to us.  Every time a doctor came in the news got worse.  We were about 9:00 that night he would probably be born and he would only have at most a 2% chance of making it.  They made us make decisions regarding his care that no parent should ever have to make.  The entire time I had done fairly well, no tears, until they told us this and needed our decisions.  It was honestly one of the worst moments of my life ever and I pray I never have to experience a moment like that again.  We began asking a ton of questions and quickly said no to them doing a c-section unless my life was in immediate danger.  We felt that if we did a c-section it would simply be a death sentence for our little man and we were not willing to do that not when he still had a chance.  Everyone seemed surprised at first that we said we were just going to wait it out and see if I went into full labor. 

DP and I sat and just prayed without ceasing for hours!  We prayed for our little man.  We prayed for us and our decisions.  We prayed for the doctors working on us.  We prayed for anything and everything in that moment.  DP's mom and sister were here as were my brother and his wife.  They all 4 knew how serious the situation was and were just as worried as we were.  My parents were in Maine on vacation and the nurse told us we needed to call them and have them come home asap.  Dad was able to get a private jet through his company to pick them up and bring them because all of the flights out of the area were booked for over 24 hours!  They made it to town about 2:30 in the morning.  Our pastor and his wife came to pray with us and help us about 9:30 and it was such a blessing to have them around. 

Everyone left and things calmed down sort of around 1:00 on Thursday morning.  I however did not sleep! I mean how could I??? About 8:00 on Thursday morning doctors and family started to show back up and assess the situation.  They believed that everything was beginning to stabilize but it was too early to tell.  The goal was to make it til Friday at 4 as this would be 48 hours past the first steroid shot meaning it would be in his system and have worked.  Thursday is pretty much a blur to me, I know we changed rooms and that I was more stable and so was he. 

Friday came around and our team of doctors began to show up! I was finally able to breath.  Dr. David Kays who would fix the CDH was back in town and we were able to meet with him.  A plan was made that DP and I are comfortable with and our team.  The ultimate goal is keep little man in place until 34 weeks for sure.  One doctor today said he is pushing for 36-38 weeks which works for me!  We are taking it one day at a time and just praying for God's strength and love and to make all of the right decisions.  We are trusting our team of doctors and praying for 34 weeks.  The key to 34 weeks is that if he should need ECMO for the CDH (it is a ventilation technique a lot of CDH babies need) he can't have it until 34 weeks or 4.4 lbs.  There is a chance he will not need the ECMO ever but that is not a chance we are willing to take.  Anything after 34 weeks will help him to be stronger and more developed. 

I plan to keep using this blog and will post more personal things that we don't want to share with everyone else who is reading our other blog.  Feel free to read both blogs as I love to hear from all of you. Now that I am stuck in bed maybe I will be better at commenting on all of the blogs I read! 

Saturday, July 13, 2013

Wednesday, July 10, 2013

Wednesday, July 10, 2013 is a day I will never forget.  I will come back on this to talk about it in more detail within a few days but the basics are this: my water broke at 24 weeks and 2 days while pregnant with a baby with CDH!  We have started a blog to keep family and friends updated and I would love each of you to follow me there as well.  That blog is www.babyjacksondean.blogspot.com.  Please note that most people who are reading that blog know nothing about our infertility struggles or how we used IVF to conceive.  In that blog we are not private, I use our names and may even post pictures as time progresses.  I plan to continue to blog here and use this blog as my escape.  I know that I will need this blog probably now more than ever and I really hope that each of you will continue on this journey with me by following both blogs! 

Once I am not on magnesium (it is not fun!) or when I am on it but it is not 11:00 at night I will post an in-depth update on exactly what happened on Wednesday July, 10 until please read the other blog and feel free to comment! 

Thank you all!